M20.324 Carers_Artwork.qxd - MS Society

M20.324 Carers_Artwork.qxd

4/7/11

12:36

Page 1

Second edition July 2009

Caring for someone with MS: a handbook for family and friends


4/7/11

12:36

Page 2

Written by Joanna Ridley, edited by James Bailey and Sarah Westlake. With thanks to all those working with and affected by MS who contributed to this publication. Also available free of charge from the MS Society: MS in your life – a guide for young carers MS carers – the man’s guide to caring for someone with multiple sclerosis www.mssociety.org.uk/publications Telephone 020 8438 0799 (weekdays 9am-4pm) Disclaimer: We have made every effort to ensure that information in this publication is correct. We do not accept liability for any errors or omissions, and policy and practice may change. Seek advice from the sources listed. Suggestions for improvement in future editions are welcomed. Please send them to [email protected] © Multiple Sclerosis Society, 2011 Second edition, July 2009 Reviewed and reprinted, June 2011 Designed by Crescent Lodge

This publication is available in large print (22 point). Call 020 8438 0799 or email [email protected]


4/7/11

12:36

Page 3

If you are reading this publication there’s a good chance that you already consider yourself to be a carer, or you may have been given it by someone who thinks that it could be of benefit to you. Although the term ‘carer’ is one that most of us understand, it is not one that we find easy to adopt for ourselves. For many of us, taking on the identity of ‘carer’ is by no means natural or even welcome. We are first and foremost husbands, wives, sons, daughters and so on. We do what any of us would do, providing care and support to someone close to us. It is when caring responsibilities begin to have too great an impact on our lives that taking on this ‘label’ can prove useful, as it is often the first step to getting the support that we may need. Legislation for health and social care services can differ between England, Wales, Scotland and Northern Ireland. This booklet was originally written to cover the situation in England. We have since tried to highlight wherever there are major differences and alternative sources of support or information in the four nations of the UK – for example, personal budgets for social care services are currently only being rolled out across England. Devolved government is not static, so things may change in the lifetime of this book. It’s always worth seeking local advice to be sure of the situation where you are. See the back cover for contact details of our national offices. © MS Society 06/11

3


4/7/11

12:36

Page 4

7 INTRODUCTION Who is a carer? How many carers are there? Maintaining relationships SECTION 1 9 ABOUT MS Professionals involved with MS SECTION 2 15 BECOMING A CARER Changing emotions Support groups Work and caring Maintaining balance in your life Finding it hard to cope SECTION 3 20 HELP AVAILABLE Assessing and identifying needs – and how to access services Services and support Short breaks Direct payments Charging for care services Continuing NHS care Making a complaint if you are not happy about services provided SECTION 4 34 CARING FOR SOMEONE WITH MS When the person you care for comes home from hospital Mobility and equipment General mobility Wheelchairs and scooters Moving and handling Principles of safe moving and handling Moving and handling aids Equipment that a person with MS might use without help Equipment that you might use to help move the person with MS Obtaining equipment Financial assistance for equipment and daily living aids

4


4/7/11

12:36

Page 5

Practical caring advice General care skills Helping someone with their general appearance General hair care Helping someone to dress MS related issues Medication Disease modifying drugs Taking disease modifying drugs Steroids Continence problems Pressure sores Coping with cognitive symptoms Mood changes Sexuality SECTION 5 76 YOUR OWN HEALTH Nutrition Looking after your back Dealing with emotions – anger and guilt Stress and depression Recognising depression and how to deal with it Coping with loneliness and isolation Training for Carers SECTION 6 84 FINANCIAL ISSUES Disability, income-related and carers benefits Employment and Support Allowance (ESA) Disability Living Allowance (DLA) Attendance Allowance Income Support Pension Credit Carer’s Allowance Your Pension and Carer’s Allowance Sources of information and help Other financial help Your future income

© MS Society 06/11

5


4/7/11

12:36

Page 6

SECTION 7 91 IF CARE NEEDS INCREASE Long-term residential care Palliative care End-of-life care Hospice care Planning ahead – the legal paperwork Writing a will SECTION 8 99 WHEN DEATH OCCURS Registering the death Arranging the funeral Paying for the funeral Bereavement Talking about it Younger family members SECTION 9 105 LIFE AFTER CARING Retraining and going back to work Building up your social life 108 Listing main legislation 110 Patient rights for hospital discharge (England) 111 Useful organisations

6


4/7/11

12:36

Page 7

Introduction Who is a carer? We use the term ‘carer’ to refer to anyone who looks after or supports someone else who needs help with their day-to-day life, in this case because of their multiple sclerosis (MS). Carers may be family members, including children and young people, who live with the person they care for, or family, friends or neighbours who live elsewhere. Being a carer can mean many things, from simply supporting and keeping a check on someone, to carrying out a complex range of tasks, sometimes day and night. With MS, someone’s caring role can change from one day to the next, with many varied and complex symptoms influencing the support they need.

How many carers are there? Research tells us that there are over six million carers in the UK; individuals caring for others with all manner of different disabilities and conditions. At the moment we simply don’t know the number of carers of people with MS, but it is estimated that around 100,000 people have the condition. If we consider that most will need care and support at some time from close family and friends, during relapses or maybe continually, we can only conclude that there are a great many carers of people with MS who have their own needs for information, advice and support.

© MS Society 06/11

7


4/7/11

12:36

Page 8

Maintaining relationships As the impact of caring increases, it can affect the relationships we have with those we care for. Even though many of us anticipate the possibility of caring for our parents when they become old and frail, the reality of caring for a parent with MS, often before they reach old age, can be quite a shock. For some younger people with MS, it becomes necessary to move back to the parental home, to be cared for by parents who may have been anticipating a carefree retirement. For those who are parents, caring for an adult child with MS can become very physically demanding, even without considering the emotional impact of seeing their once healthy child being affected by MS. However, the impact of MS on family relationships is often most acutely felt when a partner or spouse develops the condition, leading the other partner to take on the caring role. Whether sudden or gradual, changes within relationships brought about by caring can be difficult to cope with. Yet caring can also be extremely rewarding and fulfilling. The key to it remaining so is ensuring that the person with MS, and you as their carer, both receive the support that you need. We hope that this handbook goes some way to showing you how you can make sure this is the case. Further advice and information is also available from Carers Direct (part of NHS Direct), Carers UK and the Princess Royal Trust for Carers, or your local carers’ centre. i

8


4/7/11

12:36

Page 9

SECTION 1

About MS Having an understanding of MS and its many and varied symptoms can help you in your caring role. The MS Society produces a great deal of information about the condition (see the further reading suggestions at the end of this section). On the following pages there’s a brief summary of its main characteristics, including how the most common symptoms might affect someone’s care needs.

© MS Society 06/11

9


4/7/11

12:36

Page 10

In MS, the immune system attacks the covering that surrounds nerve fibres in the brain or spinal cord, called ‘myelin’. As a result, messages travelling along the nerves become disrupted. They can slow down, become distorted or not get through at all. It is this disruption to messages which leads to the symptoms of MS. Although each person’s experience of MS will be different, there are three main types of MS, each with its own broad characteristics: Relapsing remitting MS Most people have this type of MS, characterised by relapses (or attacks) followed by periods of remission (where symptoms disappear completely or almost completely). Secondary progressive MS Most people with relapsing remitting MS go on to develop secondary progressive MS. With this type of MS, people may still have relapses and remission, but recovery between relapses may not be as complete and there is also an increase in disability over time. Primary progressive MS Around 10 to 15 per cent of people with MS have primary progressive MS. From the outset, symptoms gradually develop, without periods of recovery. A small number of people who have no further symptoms for ten to fifteen years after one or two initial relapses are sometimes said to have ‘benign’ MS. MS is unpredictable and there is a wide range of symptoms, which may come and go without warning. Sometimes a symptom is present just for a few hours, sometimes it stays around for longer. Many people will only experience a few of the possible symptoms mentioned in the table overleaf, but it is very difficult to predict what symptoms will occur and how the condition will affect them in the future.

10


4/7/11

12:36

Page 11

MS symptoms and how they might impact on your caring role Symptom

Possible support needs

Fatigue – an overwhelming sense of tiredness making physical or mental activity difficult and, for some, impossible

General support with day to day living; you may need to take on many of the tasks previously carried out by the person with MS

Balance problems and vertigo – walking difficulties, problems with coordination

Help with mobility; some people use a wheelchair to get around at times

Visual problems – blurred or double vision, temporary loss of sight in one eye or both

General support with day to day living; help with reading and general mobility; the person with MS may not be able to drive when experiencing this symptom

Numbness or tingling – commonly in the hands or feet

General support with day to day living; help with mobility

Pain – sometimes mild, sometimes severe

Help with medication; emotional support if the pain becomes debilitating

Loss of muscle strength and dexterity.

General support with day to day living; many simple tasks such as dressing and washing will become very difficult; mobility may be affected

Stiffness and spasms – tightening or rigidity in particular muscle groups

General support with day to day living; help with mobility; help with medication

Anxiety, depression or mood swings

Emotional support; patience and understanding

Cognitive problems – difficulty with memory and concentration

Help with daily routines; patience and support when problems become frustrating

Speech problems – slurring, slowing of speech, or changes in pitch or tone

Assistance with communication; patience if communication becomes laboured

Incontinence – a lack of control over bladder or bowel functions

Help with toileting and personal care; possible assistance with catheter and stoma use if these options are chosen

Sexual problems – lack of libido, erectile difficulties

Support to explore solutions to sexual difficulties; patience and understanding © MS Society 06/11

11


4/7/11

12:36

Page 12

These symptoms can range from mild to severe. Some symptoms, such as walking difficulties, may be obvious to anyone. Some, such as pain or fatigue, are not and are often referred to as hidden, invisible or silent symptoms. These symptoms can be particularly frustrating for the person with MS as others often do not understand them or do not appreciate the impact they are having.

FURTHER READING Just Diagnosed, an introduction to MS What is MS? Information on diagnosis, symptoms, treatment, management and sources of support What is relapsing remitting MS? What is secondary progressive MS? What is primary progressive MS? MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am- 4pm)

Professionals involved with MS The often complex and variable nature of MS means that people may need the support and expertise of a range of different professionals, including a neurologist, an MS specialist nurse, a physiotherapist, an occupational therapist, a social worker, or a continence adviser. In many areas of the country, these professionals work closely together in multi-disciplinary teams. In other areas, support can be more fragmented and you may need to contact a number of different organisations to get what you need. Here, we focus on some of the key professionals involved with the care and treatment of someone with MS. Depending on where you live, some of these professionals may be MS specialists. 12


4/7/11

12:36

Page 13

To make contact with any of the professionals listed below, talk first to your GP who can provide contact details or make a referral if necessary. Neurologist Neurologists have expertise in conditions that affect the nervous system. Some specialise in MS. A neurologist will be involved with diagnosing and prescribing treatment. Unfortunately, there is a shortage of neurologists in the UK, so time with the neurologist may be very limited. MS specialist nurses MS nurses are often the first point of contact to discuss any MS-related concerns. They often work within the multi-disciplinary team and they provide much needed advice and support to help individuals manage their condition. The MS Society has a dedicated programme of support for MS nurses across the UK. Physiotherapists Physiotherapists provide advice and assessment in relation to movement and mobility. They can advise on suitable exercise and can help people manage MS-related pain. Some physiotherapists have specialist training to become neuro-physiotherapists, and as MS is so complex it can be helpful to see a physiotherapist with this sort of expertise if at all possible. Occupational therapists The role of the occupational therapist (OT) is to help individuals to regain independence after an illness or accident, exploring ways of making such everyday activities easier, either by suggesting how to do things differently or adapting the home environment. They are often involved after someone is discharged from hospital, exploring how they can best cope at home. They will advise on specialist equipment, and can often loan items of equipment to avoid you having to purchase them yourself. If you are contemplating major adaptations to your home,

© MS Society 06/11

13


4/7/11

12:36

Page 14

an OT will usually be involved in the assessment process. Unfortunately, funding restrictions and a national shortage of OTs mean that you may have to wait quite a while for an appointment. Continence nurse This is a nurse who specialises in bladder and bowel problems. Their role is to assess the nature of any problem and provide advice on appropriate medication or other management strategies. GP surgery Day-to-day care is often provided by your GP surgery. Along with one or more GPs, the surgery may include a practice manager, a practice nurse, district nurses and health visitors, all of whom should work together to ensure that patients receive a coordinated service.

14


4/7/11

12:36

Page 15

SECTION 2

Becoming a carer In this section we explore the sorts of issues that might arise when someone first becomes a carer, and as their caring role increases. Later sections in the handbook cover the practical aspects of caring for someone with MS.

© MS Society 06/11

15


4/7/11

12:36

Page 16

Changing emotions Even though caring can be rewarding, it can also bring great emotional and physical demands. Often of greatest concern for carers is feeling that they have no time for themselves – that all of their time is taken up with looking after the person they care for. The frustration this causes can lead to feelings of guilt. How can you have such negative feelings about someone you care about? Why aren’t you able to do more to help them? Ironically for many carers, even though they are often providing high levels of care, sometimes around the clock, they feel guilty about not doing even more. You may be under pressure to balance caring with other demands in life, and the very person you turned to in the past for support and guidance could be the person you are now caring for. You might feel guilty about expressing any negativity about the current situation, so you bottle up your feelings and hope they will go away. As a result, caring can feel like quite a solitary existence. But do remember that you are not alone. As we have seen, there are a great many carers in similar circumstances, feeling similar emotions to you. It is not uncommon to feel any or all of the following: frustration resentment guilt anger fear loneliness depression

Later in the handbook we explore in more detail the emotional impact of caring and what you can do to deal with the emotions you may experience (see Section 5).

16


4/7/11

12:36

Page 17

FURTHER READING Living with the effects of MS MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am- 4pm)

Support groups Just as it can be difficult to adopt the identity of ‘carer’, it can also be difficult relating to other carers. But sharing your feelings with others can be hugely beneficial. Carers who attend support groups, or who are in contact with other carers (online for instance), say that they gain a great deal by sharing experiences, learning from each other and simply having that extra bit of social contact with others who understand their day-to-day issues. MS Society branches sometimes have carers groups, or run social events for carers. If you are worried about leaving the person you care for alone, ask about alternative care provision. Many branches are able to cover the costs involved and often work in partnership with organisations such as Crossroads Care i , who have highly trained and experienced staff able to provide this kind of support. Another option might be your local carers’ centre – contact the Princess Royal Trust for Carers i or ask social care services (social work in Scotland) for details. Many have a wide range of activities and events for carers, including training opportunities and day care services. If you are not able to leave the home, or are not comfortable with attending a face-to-face event, an alternative might be to go online. The MS Society has its own carers’ discussion board, as do some carers’ centres and outreach services.

Work and caring It can be stressful trying to balance work and caring, particularly if your caring responsibilities are unpredictable © MS Society 06/11

17


4/7/11

12:36

Page 18

from one week to the next, as is so often the case with MS. As much as it is tempting to try to carry on with your current work arrangements as your caring responsibilities increase, it often helps to talk to your employer about your home commitments. It is in your employer’s best interest to explore how changes to your work arrangements can help you continue work and caring. It is worth thinking about what arrangement would be best for you before you meet with your employer. For instance: Could you work from home or have flexible starting or finishing times? Could you compress your hours into fewer days, by fitting five days’ working time into four? Would your employer consider ‘annualised working hours’, where the amount of hours you work per month or year are worked in a flexible way over that period of time? Can your role be job-shared or reduced to part-time hours? Is your employer able to offer flexible holidays to accommodate alternative care arrangements? You are entitled to take a reasonable amount of time off if you have worked for your employer for at least a year and there is an emergency at home, for instance if the person you care for becomes ill or has an accident, or if there is a breakdown in care arrangements. Consider talking to your employer about other forms of leave, including: carer’s leave (paid or unpaid) compassionate leave borrowing or buying leave career breaks

18


4/7/11

12:36

Page 19

Since 6 April 2007, you have a legal right to ask your employer for flexible working if you are caring for an adult who is a relative or lives at the same address as you. Carers UK has further details. i

Maintaining balance in your life Caring takes time and energy. It is often difficult to balance caring responsibilities with everything else you need to do, such as working, parenting or taking care of the home, and it is this feeling of not being able to cope that can be most stressful for many carers. Even though it sometimes feels that no one understands what you are going through, health and social care services do appreciate that unless they support carers, the caring role may come to an end – either because the carer becomes ill or because they simply refuse to carry on. Current legislation seeks to ensure that carers’ needs are taken into account and addressed. The Carers Equal Opportunities Act, for instance, requires social care services in England and Wales to assess carers’ needs in relation to access to employment, education and leisure – the sorts of things other people take for granted. The appendix on page 108 lists this and other legislation that has been put in place to support disabled people and carers.

Finding it hard to cope It is often extremely difficult to acknowledge to ourselves or admit to others that things are getting ‘too much’. Sometimes it’s the physical strain of caring that takes its toll. Other times it’s the emotional impact of dealing with often complex symptoms, such as cognitive difficulties. Even though you may feel overwhelmed at times, often a little help with just one or two aspects of your caring role can make all the difference. Knowing how to access that help is essential. The following sections of this book talk about many of the options.

© MS Society 06/11

19


4/7/11

12:36

Page 20

SECTION 3

Help available In this section we explore the sort of help that is available for you and the person you care for, and how you can access these services. The exact services available vary across the UK, so it is worth seeking information from your local carers’ organisations, MS Society branch or Citizens Advice Bureau.

20


4/7/11

12:36

Page 21

Assessing and identifying needs – and how to access services In many instances, if a disabled person is provided with appropriate health and social care services, the level of care that family and friends need to provide can be much reduced. Services are coordinated by the social care services department of your local authority (social work in Scotland). In order for someone to be given support they must first have an assessment of their needs, often referred to as a ‘community care assessment’ or ‘care needs assessment’. There is also help available to you as a carer – the key to accessing this support is the ‘carer’s assessment’. Each of the four nations of the UK has a different system for determining whether someone is eligible for social care or social work services. However, the general principle is the same. Wherever you are in the UK, there are four eligibility bands – critical, substantial, moderate and low. Most local authorities are restricting services to those individuals who fall within the ‘substantial’ and ‘critical’ categories due to financial constraints, meaning that many disabled people are not eligible for services at all. If this is the case for the person you care for, they might be provided with information about local services, but then have to arrange and pay for the services privately. Whether the person you care for receives services or not, it is important that your needs as a carer are considered separately. Helping you now with the care you give can prevent problems arising in the future. A carer’s assessment is usually carried out by one or more social care staff, often at the same time as the community care assessment, but you can ask to have your assessment carried out separately. You can ask to have a carer’s assessment even if the person you care for does not want or need their own assessment. The aim of the carer’s assessment is to explore how you can best be supported in your role as a carer, with a written ‘plan’ stating what support and services can be put in place to do this. It is in the best interests of social care services that you are supported as well as can be, so that you feel able to continue caring. © MS Society 06/11

21


4/7/11

12:36

Page 22

It is a good idea to prepare well for the assessment. Things to think about include: How MS affects the person you are caring for. How their symptoms vary from day to day – it is important to focus on the support needs you might have on a ‘bad’ day, not necessarily those on the day you are having your assessment. What specific caring tasks do you carry out and how could you be helped with these? Do you need help or advice about moving and handling the person you care for, personal care, or administering medication? Are you finding it difficult to keep the house clean alongside your caring responsibilities? Are there any pieces of equipment, ‘daily living aids’ or adaptations to your home that would make a difference to the independence of the person with MS and to your caring role? Are you finding it difficult to balance other competing priorities with your caring role? In Scotland and Wales, local NHS boards (and local councils in Wales) are required to publish strategies to ensure that carers are given the advice and support they need. In Scotland these are known as Carers Information Strategies, and as Carers Strategies in Wales.

FURTHER READING Getting the best from social care services Getting the best from social work in Scotland Getting the best from social care services in Wales MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am- 4pm) If you live in Scotland, further information is also available from Care Information Scotland i 22


4/7/11

12:36

Page 23

Services and support Home care Home care services offer practical help and support to people at home with essential tasks they are unable to manage safely for themselves. For example, this help may be in the form of assisting someone to get up or go to bed, to get washed or to get dressed, or to do the shopping or laundry. The aim of home care services should always be to help someone live as independently as possible and to encourage them to regain skills they may have lost as a result of their illness or disability. You may be tempted to take on many or all of these tasks yourself, but you have to be aware of your own limitations. Also, remember that, with some adjustments, the person you care for may be able and willing to safely do the task themselves. Make sure that their community care assessment, as well as your own carer’s assessment, takes into account the sort of home care support you both need. Home adaptations Many people naturally try to adapt how they carry out everyday tasks when illness or disability limit what they can do. Sometimes they struggle on, when a few minor adaptations to the home (the installation of hand rails or a bath hoist for instance) could make life much easier. As well as enabling the person you care for to be as independent as possible, adaptations to the home can make your role as a carer much easier too. Some small adaptations are relatively simple and may be available free of charge through the local authority. Sometimes, if a person’s disability progresses, it may become necessary to have major adaptations made to the home, such as an extension, the installation of an accessible bathroom, or a lift. You can get advice from your local social care services department and, in some cases, receive financial assistance to alter your home.

© MS Society 06/11

23


4/7/11

12:36

Page 24

Common adaptations that could help include: widening doors and installing ramps providing or improving access to rooms and facilities – for example, by installing a stair lift or providing a downstairs bathroom providing or improving a heating system adapting heating or lighting controls to make them easier to use improving access to and movement around the home An assessment will be carried out, usually by an occupational therapist, who will make recommendations for any work required. In England, Wales and Northern Ireland your local council (or Housing Executive NI) can often help towards the cost of adapting your home through the Disabled Facilities Grants (DFG) system. These are means tested, so, alongside the assessment to consider the work required, there will be a financial assessment. This means test will take into account savings above a certain limit, but some benefits – including Disability Living Allowance and Income Support – are ignored. The means test calculations are quite complicated and depending on the outcome of the assessment, the amount of financial assistance offered can vary from zero to 100 per cent of the cost of the adaptations. In Scotland you can get financial support through the Scheme of Assistance. Your local council must offer you a grant of at least 80 per cent of the total cost of any adaptations it has assessed you as needing. If you, or anyone else in your household, receives certain income-based benefits then this would rise to 100 per cent of the costs. The MS Society can give grants towards home adaptations, but applications can only be submitted once the outcome of the DFG or Scheme of Assistance application is known. You can contact your branch or the grants team at the MS Society National Centre to find out about making an application in England, Wales or Northern Ireland. In Scotland call 0131 335 4050 and ask for the grants officer.

24


4/7/11

12:36

Page 25

FURTHER READING Adaptations and your home Financial assistance from the MS Society MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

Short breaks If you are in need of a break from caring, there are a number of options to consider. Sitting services Sitting services provide a short break for carers in their own home, giving them time to themselves and a break from their caring responsibilities. They can also offer companionship and basic care services for the cared for person. Your local authority will have details of providers of sitting services. Day centres If the person you care for is unable to spend time out of the house unaccompanied, attending a day centre may be an option. Many are run by social care services, others by organisations such Leonard Cheshire Disability i . As well as activities throughout the day, services such as hairdressing or chiropody are often available at a small charge. Transport to and from the centre can usually be arranged. As well as benefiting by having a break, if the person you care for attends a day centre on a regular basis, you might also get to know other carers in similar circumstances. Respite care (sometimes called ‘short breaks’) The aim of respite care is to give you and the person you care for a break from the usual routine of caring and being cared for. In many instances, regular short breaks can help carers continue to provide ongoing care and support at © MS Society 06/11

25


4/7/11

12:36

Page 26

home, avoiding the possible need for long-term residential care. Planned respite can take place in the home, with care staff enabling the carer to take a break, or in a residential setting. If the support provided in the home does not include personal care it may be referred to as a sitting service. Emergency respite can be put in place if a carer is unable to provide support at short notice, perhaps due to a family emergency or accident. When a person’s support needs are assessed, or you have a carer’s assessment (see page 21) your views about what should happen in an emergency should form part of the care plan. This is sometimes referred to as ‘contingency planning’. It is also possible to have a respite break together with the person you care for, maybe with a holiday provider such as Vitalise offering care assistance for you. i For more information about short breaks, contact the MS Society UK Information team on 020 8438 0799 or go to www.mssociety.org.uk. The Information team at MS Society Scotland has information about breaks in Scotland. Contact them on 0131 335 4050 or email [email protected] You may also be able to get funding towards the cost of short breaks or respite care through the MS Society’s Short Breaks and Activities Fund. This is for people with MS and their carers, to help them access respite care or other short breaks. For more information, contact the Grants team on 020 8438 0700. If you live in Scotland, contact 0131 335 4050. Your local carers’ centre will also have information about short breaks as well as other grants that are available to help you fund them. To find your nearest carers’ centre, contact the Princess Royal Trust for Carers i . If you live in Scotland, information about respite care and short breaks is available from Shared Care Scotland. i

Direct payments Sometimes, despite the best intentions of social care staff, services may not be flexible enough to meet individuals’ needs – for instance having care staff coming 26


4/7/11

12:36

Page 27

to the home at inconvenient times. An alternative option is for the local authority to provide the money to pay for a service in the form of a ‘direct payment’. Local authorities can also make direct payments to carers to cover the cost of services you may need. Direct payments give you the opportunity to have more control over the nature, timing and type of services you receive. You or the person you care for can have a direct payment to cover the costs of all the services you need, or for just one or two services. The local authority will arrange for the remaining services you require in the normal way. There are limitations to the use of direct payments. For instance they can’t be used to pay for health care services, services provided by the local authority itself or to employ someone living in the same household as the person receiving the direct payment. As MS is a variable condition, one approach is to agree an ‘average week’ based upon the differing levels of support required. If someone finds that they need fewer hours of support for a while, the ‘lost hours’ can be used later, when their needs have increased. In each local authority area there will be help available for managing direct payments. If you are contemplating going down this route, it is often useful to talk to others who are paying for their services in this way. Someone receiving direct payments will be expected to keep basic records, but the local authority will provide guidance on the sorts of records to keep. Many disabled people use direct payments to employ ‘personal assistants’. The idea of employing someone can seem daunting at first but there will be advice and support available locally. Some people prefer to employ staff through an agency, which retains all employer responsibilities. Agencies do charge a premium however, and this approach may be more expensive as a result. It is a good idea to have a back-up plan in case problems arise, for instance arrangements to cover for sick leave of any care assistants employed directly. Your local authority can provide advice about the sorts of safeguards to consider. © MS Society 06/11

27


4/7/11

12:36

Page 28

Some situations cannot be planned for in advance and if you are left without services at any point, the local authority must arrange replacement services. You should contact the local authority as soon as you know that a problem may arise. Although they are a solution for many, direct payments are not suitable for everyone. Some people do not want the work involved in making the practical arrangements or handling the paperwork. If the person you care for has second thoughts about using direct payments they can change their mind at any time. They should contact the local authority straight away if this is the case, to request that services be reinstated. Personalisation and self-directed support Personalisation, or self-directed support, refers to a new focus in social care policy in England and Scotland. This emphasises supporting people to have choice and control over the care services they use. In England, anyone who is eligible for social care support from their local authority should be offered a personal budget – although they don’t have to have one if they don’t want one. Personal budgets put the person receiving support at the centre of the planning process. They are organised around outcomes – what the person wants to achieve – rather than simply focusing on what the money is spent on. For example, the money could be used to pay for someone to accompany them to the football, provided it is helping them achieve the outcomes agreed with their social worker in their support plan. With a personal budget, the person you care for can choose to receive all of their support from the local authority or buy all of their support using direct payments, or a combination of both. As with direct payments, there is additional responsibility that comes with the freedom of personal budgets. However, there should be a support service in your area that can help with managing the arrangements. In Scotland, people can ask to have their social work support needs met through self-directed support. This means they would arrange some or all of their support themselves, rather than having it provided by the local authority. Self-directed support is different from direct payments in that it’s possible to use money from different funding streams, including health care, to meet a wider range of needs than just social care, 28


4/7/11

12:36

Page 29

and promote social inclusion. As with personal budgets in England, support services are available to help people to arrange their own support.

FURTHER READING Getting the best from social care services Getting the best from social work in Scotland Getting the best from social care services in Wales MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

More information about self-directed support is available from www.selfdirectedsupportscotland.org.uk.

Charging for care services Unlike health care, you may be expected to pay for social care services. If the person you care for is assessed as needing services, they are likely to be asked about their income, benefits and savings. You can also be charged for services offered to you as a result of your carer’s assessment. Charging levels vary from one area to another, although there is government guidance to ensure: charges are ‘reasonable’ social care services only charge what people can afford no one is denied a service they need because they cannot afford to pay for it or face hardship if they do pay the extra costs a person faces as a result of disability or ill health are taken into account As a carer, you cannot be charged for the services the person you care for receives. However, if you have joint income, savings or other assets, the council may require details to work out how much belongs to the person © MS Society 06/11

29


4/7/11

12:36

Page 30

needing services. If the person you care for cannot afford to pay the assessed charge, they should ask to have the charge reviewed, particularly if they have additional disability-related costs that have not been taken into account. Councils have quite a bit of discretion to reduce or waive charges, so it is well worth opening discussions if you are worried about affording the services needed. In some respects, the guidance around charging is different in Scotland, Wales and Northern Ireland. For example in Scotland, personal care (such as help with washing, dressing, or taking medication) is free for people over 65 who are assessed as needing services. And there is an allowance for personal care for people in care homes aged over 65 and for nursing care for anyone in a care home. In Wales, local authorities are not allowed to charge more than £50 a week for any combination of care services, regardless of how many hours of care are needed. Social care services cannot legally withdraw or refuse a service if a person decides not to pay for it. They can however, place a charge on the person’s house, so that if it is ever sold, the outstanding money can be reclaimed by the council. They can also pursue payment through the courts, so do seek guidance if you or the person you care for are contemplating refusing payment. The law says that a service user should not give up or refuse a service they need just because they cannot afford to pay for it. They should continue to receive and use the service while they are disputing the charge. If the person you care for is in this position, they may be able to get help to dispute their charges from their local disability or advice agency.

FURTHER READING Fairer charging policies for home care and other non-residential social services Department of Health (www.dh.gov.uk) Fairer charging policies for home care and other non-residential social services (Wales) Department of Health and Social Services (www.wales.gov.uk/health) Charging guidance for non-residential social care services Convention of Scottish Local Authorities (www.cosla.gov.uk) 30


4/7/11

12:36

Page 31

Continuing NHS care Continuing NHS care is the care given to people who do not need care in hospital but nevertheless have an ongoing need for health care, specialist care, regular treatment or other support. It is funded by the NHS and provided free of charge. If you feel that the person you care for may be eligible for continuing care, an assessment will need to be carried out by health and social care services staff involved in their care. The type of care the person will receive, following the assessment, will fall into one of three categories: Continuing NHS care For people who need the most intensive or specialist health care. The care can be provided in any setting, but it is most often provided in a care home, a specialist hospital or a hospice – or sometimes in the person’s own home. Jointly provided care by the NHS and social services Health care would be provided free of charge by the NHS. The care provided by social care services may be subject to a charge and a financial assessment will be carried out to assess whether a contribution towards the costs is required. (For information about the costs of care provided in care homes, see the MS Society publication Residential care and your options.) Social care only This is for people whose support needs can be met by staff who are not medically qualified or supervised. Social care is provided by social care services departments and is usually subject to a charge (though see page 30 regarding over-65s in Scotland).

© MS Society 06/11

31


4/7/11

12:36

Page 32

If you are unhappy with the results of an assessment you can ask for the case to be looked at again. The first step will be to talk through your concerns with a professional who was involved in the assessment. If you are still unhappy after this discussion, you can ask your Primary Care Trust, Health Board or Health and Social Services Trust to review their decision. As these discussions can often be quite complicated and stressful, you can ask to be referred to an advocate who can speak on your behalf. Ask for details of local advocacy services or contact Action for Advocacy. i If you are still unhappy with the decision, you can seek a formal review by an independent review panel. You will need to do this in writing to the designated officer – they have the job of presenting the case to the independent review panel, which will hear the case and make a recommendation to the health care provider. The assessment of eligibility for continuing NHS care is very complicated. It is well worth seeking independent advice if you are unsure or have concerns.

FURTHER READING Getting the best from social care services Getting the best from social work in Scotland Getting the best from social care services in Wales Residential care and your options MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm) Continuing Healthcare – should the NHS be paying for your care? Continuing Healthcare – understanding the assessment process Both free to download from Counsel and Care i

32


4/7/11

12:36

Page 33

Making a complaint if you are not happy about services provided Every local council must, by law, have a formal complaints procedure, and must publish information about how it works. If you are not happy with the service you receive or a decision that has been made, first raise it with the staff involved. However, if you are not happy with their response, use the council’s complaints procedure. If you remain unhappy at the end of the internal process, your complaint can be reviewed by the independent body that covers your area. i England Contact the Care Quality Commission. Wales Contact the Care and Social Services Inspectorate. Scotland Contact Social Care and Social Work Improvement Scotland. Northern Ireland Contact the Regulation and Quality Improvement Authority. It helps if you have a detailed record of dates, copies of letters and emails as well as details of phone calls. If you or the person you care for is concerned about not being able to express their wishes about the care they receive, they are entitled to have an ‘advocate’ to support them. More information is available from Action for Advocacy. i

© MS Society 06/11

33


4/7/11

12:36

Page 34

SECTION 4

Caring for someone with MS This section looks at some of the particular aspects of care for someone with MS. It includes arrangements for someone coming home from a hospital stay, mobility and adaptations around the home, drug treatments, and coping with emotional and cognitive symptoms.

34


4/7/11

12:36

Page 35

When the person you care for comes home from hospital For some people with MS, particularly those who have relapses, stays in hospital can be frequent. With each admission it is important to ensure that when the time for discharge comes around, there will be adequate support services at home and that the needs of anyone providing care are also considered. Patients can sometimes end up back in hospital if they are sent home before they are well enough and without the proper support in place. As a carer, you may feel worried about coping when the person with MS comes home from hospital, particularly if their care needs have increased. Hospital staff are expected to work closely with staff from social care services, the local authority housing department and other service providers, to come up with a ‘discharge plan’ which considers the health and social care needs each patient may have once they leave hospital. If the person you are caring for is going into hospital as a planned admission, it should be possible to start planning for discharge right at the outset. This will ensure that there is as much time as possible to make preparations for their return home. Even if the hospital stay isn’t planned, soon after admission they should be assessed for any additional health, social or housing needs to be put in place before they leave hospital. You should be given a copy of the discharge plan, outlining all the arrangements that need to be in place prior to them coming out of hospital. It should include: the name of the lead person responsible for making sure that the discharge goes safely and according to plan details of any necessary medication and treatment details of any support and equipment that needs to be provided the transport arrangements that will need to be in place to get them home © MS Society 06/11

35


4/7/11

12:36

Page 36

how your training needs will be met if you will need to provide increased care or administer medications As their carer, you should be involved in the development of the discharge plan. This may involve hospital staff seeking the permission of the person with MS to disclose information about their treatment and care needs. If they are not willing for you to be given this information, it becomes all the more important for your personal needs to be considered, particularly if these conflict with their needs and expectations. You should not feel pressurised to agree to discharge before you are ready, or before any agreed services have been put into place. Hospital and social care staff must take your needs as a carer into account when discharge is being planned, and this might involve you having your own assessment. When discussing discharge, think about: How you are going to manage with your other commitments, such as work and parenting. Ask about support that might be available to help you to balance these commitments. Do you understand the ongoing health and care needs of the person you care for, and do you feel able to manage these? You may feel you need professional home care built into their ongoing care plan. If their condition has deteriorated, do you feel willing and able to take on the increased caring responsibilities? Will these affect your relationship in a negative way? You are within your rights to refuse to take on these extra responsibilities if you are worried about your relationship in this way. Is a home visit by an occupational therapist, for example, required to consider any necessary equipment or adaptations to the home? This should be completed and all agreed equipment or adaptations put in place before discharge from hospital.

36


4/7/11

12:36

Page 37

If there is a charge for social care services, has their ability to meet the cost been assessed and do you agree with the decisions that have been made? When it’s time to come home it is important to make sure that arrangements for leaving hospital have been sorted. For instance: Has transport home been organised if you need it? Some MS Society branches are able to help with this. Has the GP of the person you care for been informed about the discharge? Have you been provided with any necessary medicines to last until an appointment with the GP can be made? Have you been provided with information and, if necessary, training to cope with any new symptoms? If any necessary arrangements have not been put in place, do raise your concerns, even if it means that you have to refuse for the discharge to go ahead. If your concerns are not being addressed by the staff closely involved with the treatment of the person you care for, ask to talk to the consultant. If this does not achieve what you hope, you can raise a complaint with the hospital. There are different procedures for making complaints in the different nations of the UK. The Patients Association has information about the NHS complaints procedure for all parts of the UK. i A person cannot stay in hospital indefinitely and the hospital staff may suggest that they move to a residential or nursing home instead. If you have concerns about the ability of the proposed home to meet the ongoing care needs of the person you care for, you can ask your health authority to review the decision not to provide care in hospital. The health authority should give an explanation within two weeks.

© MS Society 06/11

37


4/7/11

12:36

Page 38

If you are still not satisfied with the outcome, you can contact the relevant ombudsman for your area. i See page 110 for patient rights for hospital discharge in England. Remember, you can refuse to provide care and the team who are planning the discharge will need to consider alternatives. It is often very difficult to refuse to provide care, but it may be the only way of getting staff (who are working with limited budgets) to agree to provide the services that you need.

General mobility If someone is diagnosed with MS and has a driving licence, they need to inform the DVLA and their insurers i . This doesn’t necessarily mean that they will no longer be able to drive. A great many people with MS continue to drive, sometimes after having adaptations made to their vehicle. Provided a doctor’s report confirms that the person is fit to drive, their driving licence will either stay as it is or be renewable – every year or every three years. This is in common with many medical conditions where situations may change over time. Many disabled drivers are entitled to a Blue Badge parking permit. Each local authority is responsible for issuing Blue Badges and it is often possible to apply online. Contact your local authority for more information. If you plan to use the Blue Badge in another local authority area, it can be wise to check the parking restrictions there, as the Blue Badge scheme is not identical across the country. Many people use their Disability Living Allowance (higher rate mobility component) to hire or purchase a car from the Motability Scheme. Further information on how the scheme is managed, information on the range of cars available and an application form are available from Motability. i

38


4/7/11

12:36

Page 39

FURTHER READING Motoring with Multiple Sclerosis i Published by Ricability (available free from the MS Society)

Wheelchairs and scooters For some people with MS, it becomes necessary to use a wheelchair or scooter. Sometimes people avoid this for as long as possible, but then find that once they do start using one, it provides them with a new lease of life, giving them much greater independence. Many people first start using a manual wheelchair. If they have sufficient strength in their arms, they may be able to propel the wheelchair independently, but in many instances, they will be pushed by another person. People tend to think about purchasing a powered wheelchair if they can no longer manage their standard manual wheelchair. An alternative option is to go for a lightweight wheelchair, many of which are much easier to self propel and manoeuvre than standard manual wheelchairs. Their relative lightness also means that they can be easily lifted in and out of a car. Wheelchairs and accessories are provided through a number of different routes. In England, the NHS Wheelchair Service is responsible for assessing and providing wheelchairs to individuals who have permanent difficulties with walking. In Scotland it is the NHS Wheelchair and Special Seating Service, in Wales, it is the Artificial Limb and Appliance Service, and in Northern Ireland it is the DHSSPS Wheelchair Service. Exactly what they will provide varies from place to place.

© MS Society 06/11

39


Lightweight wheelchair

Powered wheelchair 40

4/7/11

12:36

Page 40


4/7/11

12:36

Page 41

Manual wheelchairs are the most common wheelchairs provided but other options include: Indoor powered wheelchairs for users unable to manually propel indoors Attendant controlled powered wheelchairs for when carers have difficulty pushing a manual wheelchair outside Indoor/outdoor powered wheelchairs controlled by the disabled person You can find the details of your local wheelchair service by contacting NHS Direct on 0845 4647 in England and Wales, and in Scotland by contacting NHS Inform on 0800 22 44 88. In most cases, referral to the wheelchair service is usually via a health care professional, but it is sometimes possible to contact them direct yourself – a self referral. Each wheelchair service sets its own eligibility criteria within broad national guidelines. If the person you care for does not meet the eligibility criteria of the wheelchair service, you may need to consider private purchase. Many people use their Disability Living Allowance (higher rate mobility component) to hire or purchase a powered wheelchair or scooter from the Motability Scheme. For this, they will have to surrender part or all of their weekly Disability Living Allowance instalments for an agreed length of time. Further information on how the scheme is managed, information on the range of wheelchairs and scooters available through the scheme and an application form are available from Motability. i If the person you care for is not eligible for the Motability Scheme and cannot afford to purchase a wheelchair or scooter privately, it might be worth considering applying to a charity, benevolent or occupational fund for financial help. The MS Society, for instance, can give grants toward the costs of wheelchairs and scooters.

© MS Society 06/11

41


4/7/11

12:36

Page 42

FURTHER READING A guide to grants for individuals in need: Directory of Social Change i

Buying second-hand is sometimes an option but it is very important that you make sure the equipment is suitable and safe for the intended user, and that it is in good working order. Some commercial suppliers of wheelchairs also buy unwanted vehicles, recondition them, and then offer them for sale. This route may be more expensive but the equipment is likely to have been serviced and should be in good working order. If the person you care for is considering purchasing a wheelchair they will need to think about any necessary adaptations such as level or ramped access into the home, possible widening of doorways to accommodate the wheelchair width, and altering of room layouts to facilitate wheelchair movement. Powered wheelchairs require a secure and waterproof place for storage and charging batteries. Wheelchairs, particularly powered models, are expensive, so it is essential that you do not rush into making a purchase. If at all possible, try out a range of different models. There may be a Disabled Living Centre near you where you can see and try out different equipment, or a Mobility Centre which focuses on vehicle adaptations and wheelchairs. To find out the address of your nearest Mobility Centre, contact the Forum of Mobility Centres. i Many suppliers of powered wheelchairs provide a home demonstration service, which allows users to try out the vehicle at home. If you go down this route, take your time over making any decision to buy, and don’t feel pressured into making a purchase there and then.You are perfectly at liberty to think things through in your own time.

42


4/7/11

12:36

Page 43

Some vehicles allow the wheelchair user to drive straight in © MS Society 06/11

43


4/7/11

12:36

Page 44

People with MS may need specialist wheelchair seating and it is vital that the user is accurately assessed for the correct seat size and style as this has a direct impact on posture and comfort. Inappropriate seating can lead to serious back problems and may worsen existing MS symptoms. If the person you care for uses an electric wheelchair, you might need to adapt or even change your car, so think carefully before making a purchase. Solutions include powered lifting units that raise the user and the complete wheelchair into the car, into the space previously occupied by the seats of the front passenger or driver. Alternatively, some vehicles are designed so the wheelchair user can drive straight in while remaining in the wheelchair. Although not legally required, it is good practice to obtain insurance if you use a scooter or wheelchair – at least public liability insurance, covering accidental damage to other people and property.

FURTHER READING Insurance and MS MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm) The Disabled Living Foundation produces free factsheets on many subjects including: i Wheelchairs and scooters Choosing pressure relief equipment Clothing for wheelchair users

44


4/7/11

12:36

Page 45

Moving and handling If you have to help the person with MS to change position or move around, it is very important that you are provided with guidance and training in moving and handling. If you do not understand how best to assist the person you care for in this way, you could be risking your own health, and theirs. This sort of training is often provided by the occupational therapy service or by district nurses. Some carers centres run training sessions too. Your MS Society branch may know of local courses or even commission training itself. One of the problems with accessing training is that there are strict health and safety rules for paid care staff who help people to move. In all but a few cases, paid care staff must work in pairs and if a person needs lifting, then appropriate equipment such as a hoist should be used. Many professionals worry about giving advice or training to family carers who will need to do similar tasks on their own, often without equipment. Some refuse to provide training at all, stating that to do so would leave them open to litigation if a problem then occurred. If a piece of equipment is provided by a professional they have a duty to provide training to use that piece of equipment. There will also be a trainer in the community you can access for moving and handling but they will only advise on safe practice. There is also information in the MS Society factsheets Posture and movement 1 – an introduction and Posture and movement 2 – moving well with MS about safe moving and handling techniques if you have to help the person you care for to move. If you need to move the person you care for, think carefully about whether you can safely move them yourself. Remember, the next lift could be the one that seriously hurts your back! If you decide to carry on, Is there anyone who can help you? Are you appropriately dressed? Is the environment safe?

© MS Society 06/11

45


4/7/11

12:36

Page 46

Principles of safe moving and handling Always explain what you are about to do to the person you care for, providing reassurance if necessary. Always seek guidance and training from a suitably qualified health or social care professional. Use handling equipment that has been provided. Equipment itself can be dangerous. Only use it if you have had instruction. Wear appropriate clothing and footwear. Maintain a good posture – keep your back straight, bend at your knees and avoid twisting. Use your legs and body weight to provide power and so avoid strain on your back. Keep your head up when carrying out a manoeuvre – this promotes good posture. If you are helping someone manoeuvre from a wheelchair, ensure the brakes are on. Make sure you have enough room to carry out the task safely. If you are holding on to the person you care for, make sure that you are not causing them any discomfort or are not at risk of damaging any fragile areas of skin. Take your time. Know your own personal limitations and do not exceed them. The information provided above is not intended to replace more structured and personalised training or guidance. With a complex condition such as MS, guidance and training must be tailored to each person’s needs. All moving and handling operations carry risk, both to you as a carer and to the person you care for.

46


4/7/11

12:36

Page 47

Moving and handling aids If the person you care for needs quite a high level of assistance, you may benefit from the use of specialist equipment. Although it can feel quite strange having medical equipment around you, these sorts of aids can benefit you and the person you care for, making your tasks safer and easier, and allowing them to regain some of their independence. This is not a comprehensive list of moving and handling aids. Do make sure that you seek professional advice about the sorts of equipment that would be best for your situation, as well as training on how it should be used. The MS Society factsheets Posture and movement 1 – an introduction and Posture and movement 2 – moving well with MS include advice on safe moving and handling techniques.

© MS Society 06/11

47


4/7/11

12:36

Page 48

Equipment that a person with MS might use without help Bedblocks These are heavy blocks with handles that a person can use to help them manoeuvre in bed. The user does need to have sufficient strength in their arms and legs in order to use them effectively.

Bed lever/grab handle These can help the user to move when in bed, and also to sit up and transfer to and from the bed. Part of the structure fits under the bed or mattress to hold it in place.

48

Bed pole hoist This device has a frame that fits under the bed base for stability. It can help a user to sit up, change position and get into and out of bed. It shouldn’t be used to lift the entire weight of the person from the bed.


4/7/11

12:36

Page 49

Equipment that you might use to help move the person with MS Sliding sheet Sliding sheets are made from ultra low friction material that feels slippery to the touch. They can help you move someone in bed without the need to lift and can be useful if you need to turn the person over, change their position in bed, or slide them to the edge of the bed if they need to transfer. Once in place, depending on the mobility of the person you care for, a sliding sheet may mean they can move up or down the bed independently – which can save your strength. They can also help avoid pain and damage to delicate skin.

Mattress elevators These can help the person to sit up in bed. They can be used with knee breaks or grab handles if the person tends to slide down the bed. A simpler option is a pillow rest, which is an ‘A’ framed, fabric covered item that fits behind the pillows. © MS Society 06/11

49


4/7/11

12:36

Page 50

Transfer boards Transfer boards enable you to transfer the person you care for, or for them to transfer themselves, from one level surface to another: for instance, from bed to chair or wheelchair, wheelchair to car seat. They come in a range of different designs for use in different situations.

Leg lifters A person’s leg can be quite heavy, accounting for up to a third of their body weight, so if you are required to help adjust someone’s legs, whether they are in bed or in a chair, leg lifters may be of help. Most are manual but there are some powered versions. Depending upon the strength of the disabled person, they may be able to use this equipment unaided. 50


4/7/11

12:36

Page 51

Obtaining equipment Disability-related equipment can be very expensive. However, the needs assessment for the person you care for, as well as your own carer’s assessment (see page 21), should identify any equipment that would help you on a day-to-day basis. In many instances, social care services should be able to provide this equipment for you. There can be delays however, sometimes caused by the fact that other agencies may be in charge of supplying the equipment you need. It is always worth discussing what equipment the person you are caring for needs with their GP, as not all equipment is supplied through social care services. Sometimes, equipment is seen as helping with home nursing and will be supplied via the community nursing team. Examples might be: bed backrests; bed rails; pressure relief beds or mattresses; and hoists. Other equipment may be viewed as daily living aids, including bed blocks and grab handles. This type of equipment will usually be supplied by social care services. Equipment must be provided in a reasonable period of time if you are assessed as eligible for social care services assistance. If your needs fall outside of their eligibility criteria, they may not be able to help you directly. If this is the case, they should be able to direct you to other local sources of equipment. Be aware that if you visit a commercial equipment provider, their advice may not be impartial. It is in their interests to sell you the equipment within their range, and it may not be the best solution to your needs. There may be an independent living centre in your area – ask your local MS Society branch if there’s a centre near you, or contact the MS Society Information Team. The Disabled Living Foundation publishes a range of factsheets about equipment and daily living aids. i There are also many online suppliers of equipment where you can get ideas of what’s available. But do always check that the equipment you wish to obtain is suitable for your circumstances.

© MS Society 06/11

51


4/7/11

12:36

Page 52

Financial assistance for equipment and daily living aids If you find that the equipment you need is not available from health or social care services, you may be able to get help from your local MS Society branch, or from the MS Society national grants fund. Contact the Grants Team at MS Society National Centre for further information. In Scotland contact the grants coordinator on 0131 335 4050.

FURTHER READING Adaptations and your home Financial assistance from the MS Society MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

General care skills Caring tasks very often involve providing personal care, from help with washing and dressing to more intimate tasks such as assistance with using the toilet. Using the appropriate daily living aids can help maintain independence for the person with MS, and so reduce your own caring responsibilities. Helping someone to wash If the person you care for is experiencing difficulties with washing, think first about how minor aids or adaptations can help to maintain their independence. Using the shower can be easier than getting in and out of the bath, but if they can’t stand for a long time, a shower seat may be a relatively cost-effective solution. Handrails are also a good idea, whether using the bath or shower. If the person you care for wishes to use the bath but needs your help, do avoid trying to lift them in or out of the bath. Seek advice from a health care professional about possible aids (such as a bath seat, bath board or mobile hoist). 52


4/7/11

12:36

Page 53

1

2

3

Giving someone a bed bath © MS Society 06/11

53


4/7/11

12:36

Page 54

Even simple solutions such as long-handled brushes and flannels with straps that fit over the hand can make a huge difference to someone’s ability to wash unaided. For some, the best option is a bed bath, and below are some suggestions that may help if this is what you want to do: Make sure you have all the necessary equipment around you: a bowl of warm water, two or three towels, soap and two flannels or sponges. Use separate ones for their face and intimate area. Keep covered the parts of their body not being washed to avoid them getting cold. Start with their face, shoulders, arms and hands, washing and then thoroughly drying them before moving on (image 1). Then move onto their chest and stomach area. It is important that you dry these areas thoroughly to avoid any dampness remaining, which can lead to soreness (image 2). Cover the top half of their body before moving on to the legs and feet (image 3). If they are able to do so, allow them to wash their intimate area with the sponge or flannel, again drying thoroughly. If you are able to do so safely (see page 45), turn them onto their side to enable you to wash their back and bottom area. If this is not possible without risk to you or the person you care for, find out about support available from social care services, via the assessment process (see page 21).

54


4/7/11

12:36

Page 55

Helping someone with their general appearance Looking presentable is very important to someone’s overall sense of self esteem. Being able to help the person you care for to apply make-up or shave can be invaluable. There are a number of ways you can make the process of applying make-up easier for the person you care for. Often, simple solutions will mean that they can continue doing this independently. A magnifying mirror can provide a clearer view for someone with sight difficulties. Foam grips can be attached to small items, such as lipstick, to make them easier to hold. Keep make-up in a bowl or a bag with Velcro fastening, or apply a large tie or ring to the zip to make it easier to hold. Find products that are sold in pots as alternatives to those in tubes. Tubes can be difficult to squeeze. If someone is unable to apply their own make-up, consider these basic tips if you decide to do it for them: Foundation is applied lightly across the facial area to cover blemishes and uneven skin tone, and is best applied over a light covering of moisturiser. You can buy foundations already combined with powder. It is important to use a shade very close to the person’s own skin tone, and you can ask an adviser in one of the larger chemists or cosmetic stores to help find the right shade. An alternative is to use tinted moisturiser. Often, just a little mascara, blusher and lip gloss is all that’s needed. Mascara should be applied lightly (with the brush or wand wiped relatively clean with a tissue before applying) to avoid clogging on the lashes. Having someone else apply mascara can feel very odd and it may take a few attempts for both of you to master this stage. © MS Society 06/11

55


4/7/11

12:36

Page 56

Powder blusher is often the easiest type of blusher to apply, but make sure that you use a large soft brush to avoid creating unnatural lines of colour. Blusher should be applied just under the ‘apple’ of the cheekbone. Unless you are confident about applying lip colour (which often needs to be re-applied when you are out) lip gloss may be an easier alternative. Blot freshly applied colour with a tissue to avoid it staining teeth.

Applying make-up

56


4/7/11

12:36

Page 57

If you need to help the person you care for to shave, an electric razor may be the simplest option. It might be possible to enable them to continue shaving simply by helping to pull the skin taut whilst they move the razor itself. But if you need to take over this task, you may find the following tips useful. With an electric shaver: Pull the skin gently with one hand, while moving the shaver across their face – against the direction of hair growth – with the other hand. If you are using a rotary-type shaver, make small circular motions of the shaver head on their face. Do not to press hard or go over the same spot repeatedly. If the person you care for has sensitive skin, it may help to shave the most tender areas of their face (the neck area below the jawbone) first, and then move up to the tougher areas of their face. Some shavers generate heat which can cause irritation. Shave the tender areas of their face first while the shaver head is coolest. Keep the shaver clean and lubricated, replacing the screen and cutter when necessary. If they prefer to have a wet shave: In order to soften the beard hair, it is best to warm the face with hot water and a flannel. This will also open the pores. Use a good quality shaving brush. Some people prefer to apply foam with their hands. Fill a bowl or sink with hot water – but not too hot to touch. Wet the shaving brush.

© MS Society 06/11

57


4/7/11

12:36

Page 58

Electric shave

Apply the shaving foam to their face using the brush, being careful to avoid splattering foam into their eyes. Shave from the top of their face downwards, in the direction of the hair. Shaving in the opposite direction can cause irritation. If you are using a disposable razor you can apply a little pressure to the skin. If you are using one of the more traditional wet shave blades you should not use any pressure but may need to go over the same area more than once. If this is the case, re-apply the foam. Don’t shave on unlubricated skin. Rinse their face with cold water, which will close the pores. If you are using a brush, rinse it with hot water and shake it thoroughly. The brush should dry completely between uses. 58


4/7/11

12:36

Page 59

General hair care Having well groomed hair is something that most of us value highly. However, once someone’s mobility is impaired, effective hair washing can become very difficult. If you are not able to help with hair washing yourself, you could raise this need during the assessment of their needs carried out by social care services. It is often possible for care staff to provide this sort of service on a regular basis. If you wish to do this yourself, and the person you care for cannot use the bathroom, talk to an occupational therapist or other professional about equipment or aids that can help. One option is a hair washing tray that allows someone to have their hair washed while lying on the bed. The tray has a hose leading from it to allow water to drain into a bowl placed on the floor.

Shower seat © MS Society 06/11

59


Hair washing tray 60

4/7/11

12:36

Page 60


4/7/11

12:36

Page 61

Helping someone to dress There are many dressing aids available that make getting dressed or undressed easier, helping to preserve a person’s independence and self-esteem. Most are inexpensive and easy to use, including dressing sticks, stocking aids and long-handled shoe horns. Many people with weakness in their limbs still prefer to dress themselves, even if it takes them a relatively long time. If your help is needed, you should try to keep this to a minimum, doing just that which is necessary to allow them to continue unaided. In terms of buying clothes, it is important that the person you care for has the ultimate choice about what they wear, but helpful features might include: slip-on shoes velcro fasteners rather than laces press studs instead of buttons drawstring waists larger tags attached to zip pulls, hidden once fastened sweatshirts or t-shirts clip-on ties larger buttons on clothes non-slip soles to avoid falls or slipping off foot-rests if using a wheelchair There are a number of national and local clothing manufactures and retailers, specialising in clothing options for disabled people. The Disabled Living Foundation has a factsheet which lists some of these. i

Medication As with many other long-term conditions, life with MS often involves the use of a range of different medications and drug therapies. As a carer you may need to help with administering such treatments, and at least have an understanding of what they do, how they are taken correctly and what the potential © MS Society 06/11

61


4/7/11

12:36

Page 62

side effects may be. You can ask the GP of the person you care for to add the reason for the medication on to the label. If agency care staff need to administer medication, there may be paperwork to do before they can do this (such as a ‘MARRS’ sheet completed by the GP).

Disease modifying drugs As you learn more about MS you may hear the phrase ‘disease modifying drugs’ or ‘disease modifying therapies’. These treatments aim to affect the course of MS, by reducing the number and severity of relapses, and reducing the number of new lesions or scars on the brain and spinal cord. The four most commonly used disease modifying drugs are available on the NHS. These are: Beta interferon 1a (trade names Avonex and Rebif) Beta interferon 1b (trade name Betaferon) Glatiramer acetate (trade name Copaxone) They are prescribed for the treatment of relapsing remitting MS and also for secondary progressive MS if someone is still experiencing relapses, although any person with MS will need to meet strict criteria agreed by the Association of British Neurologists before being eligible on the NHS. i A fifth drug, natalizumab (Tysabri) is also available on the NHS for people with ‘highly active relapsing remitting MS’. Unfortunately, research has not shown any benefit of these drugs for people with primary progressive MS. It’s important to remember that they are not a cure for MS and it is not yet known whether they slow down the rate of progression of MS in the long term. Disease modifying drugs can only be prescribed by a neurologist at an MS prescribing centre – found in many major towns around the UK.

62


4/7/11

12:36

Page 63

The GP or MS nurse of the person you care for can advise about being referred to a neurologist at one of the centres. There are lots of issues to bear in mind when someone is considering using one of the disease modifying drugs and it is a good idea to discuss all the factors involved with an MS nurse or neurologist. Another source of information is the website www.msdecisions.org.uk

Using an ‘auto-inject’ pen

Taking disease modifying drugs Avonex, Rebif, Betaferon and Copaxone are injected – three under the skin and one, Avonex, into the muscle. Users often experience reactions at the site of the injection such as reddening or bruising. Many people use an ‘autoinject’ device to make injecting easier. All four drugs can cause side effects, occasionally severe enough to stop someone taking the drug prescribed. Side effects can include flu-like symptoms, such as muscle © MS Society 06/11

63


4/7/11

12:36

Page 64

ache, fever, chills or headache. They tend to be worse when drug treatment starts and lessen over time. Ibuprofen or paracetamol can help reduce the severity of these symptoms. Other side effects can include chest pain or tightness, anxiety, flushing, sweating, palpitations or a perceived difficulty in breathing. If the person you care for is taking one of these disease modifying drugs and experiences any of these or other side effects, do seek advice from their MS nurse or neurologist. Tysabri is a newer drug for people with relapsing remitting MS. It is given once a month as an intravenous infusion (a drip) in hospital, as an outpatient. Side effects could be infections, headaches, dizziness, vomiting, nausea, liver damage and infusion reactions. In clinical trials there have been several cases of progressive multifocal leukoencephalopathy (PML), a usually fatal viral disease. Because of this, regular monitoring is carried out. There are a number of other drugs being developed and you can find out about them on the MS Society’s website, or by contacting the UK Information Team on 020 8438 0799.

FURTHER READING

St Re ca a us ve gl us It re th sy re of St do ho do M an st ar pr di an

Disease modifying drugs MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

FU M M by or

64


4/7/11

12:36

Page 65

Steroids Relapses are sometimes treated with steroids, which can shorten recovery time. They are most often used if a relapse is disabling, painful or distressing. The steroids used to treat MS relapses are corticosteroids: synthetic versions of hormones produced naturally by the adrenal glands – not to be confused with ‘anabolic steroids’ used by some athletes to build muscle. It is thought that steroids shorten the duration of the relapse by reducing the inflammation and by preventing the leakage of harmful blood cells into the central nervous system. Although they can speed up recovery after relapse, recovery isn’t instant and they do not affect the degree of recovery. Steroids can be given intravenously in a drip. As large doses are often needed, this may require admission to hospital. Steroids can also be taken as tablets, which doesn’t require being admitted to hospital. Most neurologists advise limiting the number of courses any one patient should receive. Just like other drugs, steroids can have unwelcome side effects, such as pain around the injection site, increased heart rate, or sleeping problems. More serious long-term problems may include diabetes and osteoporosis, but these should only be an issue if someone is taking steroids excessively.

FURTHER READING Managing a relapse MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

© MS Society 06/11

65


4/7/11

12:36

Page 66

Continence problems Many people with MS experience continence problems at one time or another. For information and advice about any continence issues, you can contact your local NHS continence advice service or you can ask to be referred by your GP or other health care professional. The Bladder and Bowel Foundation can provide you with details of your nearest service i . It can be particularly difficult to discuss bowel problems, but there are things that can help so it is worth getting advice if you can. As many as three-quarters of people with MS experience bladder problems as a result of their MS.1 There are two main types of bladder problems that can occur in MS: with storage and with emptying. These can both appear or worsen during a relapse. Most bladder problems can be managed effectively by practical changes, drugs or intermittent self-catheterisation, and advice is available from your local continence service. Bladder symptoms in MS tend to become more difficult to manage as the overall condition progresses, particularly as mobility worsens.2 Ways of managing severe bladder problems include indwelling catheters and surgery, though not everyone will need to take these steps. There are two main bowel problems that can occur with MS – most commonly constipation, but some people also experience bowel incontinence. Around half of all people with MS experience constipation at some point. Slightly fewer, approximately 30 to 50 per cent, experience bowel incontinence at some stage.3 There are a number of factors that can cause bowel problems with MS: The colon muscles can become weak and sluggish and processing of waste matter can take longer, with stools becoming harder and more difficult to pass as a result, ultimately leading to constipation. Nerve damage can inhibit the brain’s ability to interpret sensations in the rectum and upper anal canal. 66


4/7/11

12:36

Page 67

Catheter

Stoma © MS Society 06/11

67


4/7/11

12:36

Page 68

MS can affect a person’s control of their anal sphincter muscles which may not relax properly or squeeze tightly enough when needed. Medications can cause constipation and can ultimately contribute to bowel incontinence (for example, if medication taken to ease constipation causes stools to loosen too much). If a person also has bladder problems, they may limit their fluid intake, which can lead to constipation. These are just some of the factors that can lead to bowel problems with MS, and the person you care for may need to explore a number of different solutions. As their MS progresses over time, the way they deal with any bowel problems may need to change. There are a wide variety of aids available to help with bladder and bowel problems. Continence pads, for instance, come in a variety of sizes and are designed for male and female use. Specialist bedding might help reduce the amount of washing you have to do. And commodes, which are chairs with a removable seat concealing a built-in toilet pan, are useful if the person you care for has difficulty reaching the toilet in time. A continence adviser can tell you of other possible solutions and can help you consider which ones are best for your situation. For some people, it may become necessary to use a device that allows for the collection of urine or faeces: a catheter if they have urinary incontinence, or a stoma with a bag for collecting faeces. Whilst it can be a very difficult decision to opt for one or both of these options, their use can drastically improve quality of life, both for the person you care for and for you. For urinary incontinence, the catheter tube is inserted into the bladder and a collection bag is strapped to the user’s leg or waist. Most catheters are inserted and replaced at regular intervals by a GP or district nurse. The person using the catheter, or you, as their carer, will be shown how to empty the bag. 68


4/7/11

12:36

Page 69

However, as MS often leads to intermittent incontinence, an alternative option is for self-catheterisation. If the person you care for is unable to do this unaided, you may need to learn how to do it for them. Catheters, either intermittent or indwelling, can sometimes lead to urinary infection, the first sign of which is often a burning sensation when passing water, or cloudy urine. If the person you care for experiences either of these, do seek medical help. A stoma is where the large or small intestine is brought out onto the wall of the abdomen to form an opening. The person with the stoma wears a bag over it to collect faeces. Stoma bags are very discreet and are designed to fit unnoticed beneath every-day clothes. Medical support before and after the operation is often provided by a specialist stoma nurse, who will provide you with detailed advice about how to change the bag and care for the skin around the stoma. You can seek further advice from the Bladder and Bowel Foundation. i

FURTHER READING Managing Bladder Problems and Managing the Bowel in MS MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

Pressure sores If the person you care for spends most of their day lying or sitting down and they are unable to reposition themselves, do watch out for the early signs of pressure sores. Pressure sores (often referred to as ‘ulcers’) are areas of damage to the skin and underlying tissue. They are caused when skin and tissue are directly compressed between bone and a support surface such as a bed or wheelchair. Blood is unable to circulate efficiently and this causes a decrease of oxygen and nutrients to the underlying cells. © MS Society 06/11

69


4/7/11

12:36

Page 70

They are also caused when a person’s skin and tissue are pulled in different directions, for example when they slip down a bed, are dragged slightly when being repositioned, or when sections of skin rub against a surface, such as when their heels rub against a bed sheet. The greatest areas at risk are under the bones in the buttocks because they are weight bearing and are near to the surface of the skin, but pressure sores can occur in many other parts of the body too. They can be painful, difficult to treat and even life threatening in extreme cases. If you are helping someone to move or reposition themselves you should make sure that you have been shown correct techniques to avoid causing friction to already fragile skin areas. If the person you care for has continence problems it is important to ensure that they keep the buttock and thigh areas very dry, as dampness can make skin more prone to this type of damage. There are also substances within urine and faeces that increase skin deterioration. If you have concerns, you can seek advice from a continence nurse or from the Bladder and Bowel Foundation. i Whatever a person’s body shape, they can be at risk from pressure sores. People with low body fat may have little padding over bony areas, and even though people with very high body fat have such padding, large areas of fat often have insufficient oxygen levels so they may be more prone to shear forces. Good nutrition is important for tissue maintenance and repair and can help prevent sores occurring. Good hydration is also required to maintain the resistance and elasticity of the tissues, so try to make sure that the person you care for drinks plenty of fluids. You can guard against the development of pressure sores in a number of ways. An MS nurse or district nurse can advise you on this. Make sure you know how to correctly position the person you care for when they are in bed, in order to minimise pressure on bony areas. Using an aid called a ‘knee break’ can avoid them sliding down the bed. 70


4/7/11

12:36

Page 71

When they are sitting in a chair, make sure that it supports the full length of their thighs and keep the hips, knees and ankles at right angles. Regularly help reposition the person you care for so that in areas that have been under pressure for a while, the blood flow and oxygen levels in the skin are able to return to normal. Do seek advice from district nursing staff about how often you should be doing this. You may find a turning chart or clock useful to help you establish an effective turning routine. Check their skin regularly and if you are worried about new areas of redness or deterioration seek advice from the district nursing staff. In some cases, barrier creams can prove useful, but do seek medical advice before using them. Such creams can help prevent sores from arising and they can also aid the healing of sores that already exist. Make sure that the needs assessment of the person you care for considers their need for pressure relief equipment. If their needs have changed since being assessed, ask for a re-assessment. Pressure relief equipment is designed to distribute pressure in a variety of ways and to deal with other factors that might lead to pressure sores, such as the build-up of moisture or heat. As each person’s needs are so individual, it is very important to have an assessment from a suitably qualified professional. This would usually be an occupational therapist. Pressure relief equipment such as mattresses and cushions vary widely in price, and the most expensive options may be unavailable from health or social care services. However, they may prove more cost effective in the long run, and better for the well-being of the person you care for if they prevent sores from forming. © MS Society 06/11

71


4/7/11

12:36

Page 72

The provision of wheelchair cushions is usually through the service providing the wheelchair itself. If the person you care for is being assessed for a wheelchair, you should make sure that their need for a pressure relief cushion is considered at the same time. You can ask to be referred to the wheelchair service by your GP or social worker. (For more about wheelchairs, see page 39.)

Coping with cognitive symptoms Cognitive problems in MS are very difficult to predict – and may occur even in someone newly diagnosed as well as those who have had MS for some time. It is often difficult to recognise cognitive problems, and their impact can be particularly difficult for carers and family members. It can be helpful to be aware of even mild symptoms and try to find ways to cope with and compensate for them. On the other hand, the knowledge that MS can cause problems with memory and thinking, as well as the associated fear, may result in being too aware of, for example, minor memory lapses. Everyone forgets things from time to time. It’s only a problem when the forgetfulness becomes more frequent than usual and has an impact on what an individual would like to do. Cognitive problems can worsen over time, although the rate of progression is usually fairly slow.4 This means that it is often possible for people with MS and those around them to develop compensatory strategies. A small percentage of people do develop severe cognitive problems. If the person you care for has repeated difficulties with memory, forgetting names and places, or struggling to remember familiar words, a first step may be to discuss this with their doctor, to rule out a cause other than MS. It’s often possible for someone to develop their own strategies for coping with cognitive problems, but an assessment by a professional may help them understand the areas that are causing problems and make managing them easier. 72


4/7/11

12:36

Page 73

If the person you care for decides to have an assessment, it is likely to include an interview to find out more about past and current functioning, and a number of verbal and written tests. There is a specific type of rehabilitation, called neuropsychological rehabilitation, which seeks to build on the results of the assessment, and minimise the effects of cognitive problems. This sort of rehabilitation can include learning alternative ways to perform tasks, practising and improving the weakened skills, and learning to manage with the abilities someone has. It can sometimes take place in a group setting, enabling participants to explore together their experiences and coping strategies. It is important to remember that other factors can affect someone’s cognitive abilities, including depression, stress, pain, tiredness, excessive alcohol consumption, poor nutrition and general illness.4 Medication such as tranquillisers, sleeping pills and painkillers can also affect cognition. Many people find that cognitive problems seem to be worse when they are tired. When they are very tired, or ‘fatigued’ it becomes difficult to concentrate or take in new information. However, when this fatigue is over, their cognitive functions often return to normal. If the person you care for is experiencing cognitive difficulties, you may sometimes feel angry and frustrated as well as worried and afraid, particularly if you are finding it difficult to understand what is happening. It is important to discuss these difficulties with the person you care for. Sometimes you can over-compensate for someone’s problems, maybe by taking over tasks or answering questions for them too readily. Although easier said than done, having a little more patience when they are struggling to complete a task or a sentence can be more beneficial. Younger family members can find cognitive problems especially difficult to understand. It is important that people with MS, carers and family members work together to develop coping strategies, as cognitive difficulties can impact upon the whole family. © MS Society 06/11

73


4/7/11

12:36

Page 74

FURTHER READING Living with the effects of MS Memory and thinking MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

Mood changes For some people, MS can cause changes in their moods and emotions. As well as the effects of living with the condition, nerve damage can directly affect emotions.5 People with MS may experience depression, anxiety or mood swings that seem out of character. Many people find these kinds of symptoms particularly difficult, because of the way they can impact on relationships and everyday life. Getting professional support can help everyone to understand and deal with emotional symptoms. You shouldn’t assume that they are due to the MS, but there are treatments and therapies to help with many of these symptoms, whatever their cause. These might include drug treatments and ‘talking therapies’. Of course, it is quite normal for everyone affected by MS to experience emotional reactions to the diagnosis, and if symptoms change. The MS Society publication Living with the effects of MS suggests strategies to help manage the emotional effects that people with MS, their friends, families and carers commonly experience.

FURTHER READING Living with the effects of MS Mood, depression and emotions MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm) 74


4/7/11

12:36

Page 75

Sexuality Many couples who are in contact with the MS Society express the worry that taking on the roles of ‘carer’ and ‘care recipient’ may damage the physical and emotional relationship they have with each other, making a sex-life difficult or even impossible. As a carer, it is very important that you consider how your caring responsibilities are impacting on your relationship. If you feel that they are having a damaging effect – perhaps on your mutual ability to communicate, show affection or have a full sexual relationship – you should explore with social care services the possibility of having some additional support for you, particularly for any tasks that you may find distressing such as help with toileting. MS itself can affect someone’s ability to enjoy sex, both in terms of specific difficulties caused by nerve damage, but also because of psychological factors such as low self-esteem and mood. Understanding of MS-related sexual problems has improved greatly in recent years, and there are a number of treatment approaches now available. As the saying goes, ‘it’s good to talk’ – with each other, but also with trained professionals. Research has shown that counselling sessions can be very beneficial.6 Many couples have managed to maintain successful and satisfying relationships despite experiencing sexual difficulties. Relationship counselling is available through Relate, or Relationships Scotland. i

FURTHER READING Sex, intimacy and relationships MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

© MS Society 06/11

75


4/7/11

12:36

Page 76

SECTION 5

Your own health If you spend a great deal of your time caring for someone else, it can be all too easy to neglect your own health. However, it’s crucial that you pay adequate attention to your health needs, as keeping healthy will maintain your ability to continue caring. It’s easier said than done of course, with so many other priorities in the day. There’s no magic wand, but there are a number of ways you can help to maintain your health.

76


4/7/11

12:36

Page 77

Nutrition A poor appetite can result in weight loss, a lack of energy, a reduced ability to fight infections and impaired concentration. Too much of the wrong sorts of food can of course lead to weight gain and the development of obesity-related illnesses. It is generally considered that a healthy diet for most people should contain 7: Starchy foods such as bread, rice, pasta, breakfast cereals and potatoes. Try to use high fibre versions where possible such as wholemeal bread or pasta. At least five portions of fruit and vegetables a day. A moderate amount of dairy products. Try to go for low fat versions if you can. A moderate amount of meat, fish or other proteins such as eggs, beans, peas and lentils. Try not to eat too much red meat. A small amount of salt. Many processed foods have high salt levels, so always read the labelling. … and because we all need them, the occasional treat – but only in moderation. As we all know, drinking too much alcohol can be harmful. The Department of Health advises that men should not regularly drink more than three to four units of alcohol per day; for women, this limit is two to three units. One pint of beer is usually equal to two to three units and one small glass of wine is equal to around 1.5 units.

FURTHER READING Diet and nutrition MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm) © MS Society 06/11

77


4/7/11

12:36

Page 78

Looking after your back Just over half of all carers who took part in research carried out by Carers UK reported that they had sustained a back injury as a result of their caring responsibilities. (Ignored and Invisible, Carers UK, 2001) The biggest risk factor for many carers is the need to help the person they care for to change position and move around the home. Earlier in this handbook we mentioned the value of ‘moving and handling’ training (see page 45). Without the right guidance and support, it is more likely that you will experience back pain or even serious injury. If you are experiencing back pain and it lasts for more than 48 hours, or gets progressively worse, you should consult your GP. He or she may prescribe anti-inflammatory medication to relax your muscles, or may suggest that you see a physiotherapist, osteopath or chiropractor. The lowest region of the back (the lumbar region) is where people experience pain most often. This is because it bears the entire weight of the upper body, and is flexed, twisted and bent more than any other part of the spine. If you need to help the person you care for move around it is important that you do what you can to strengthen your back muscles and keep fit. The charity Backcare produces a number of helpful publications, including The Carer’s Guide to Safer Moving and Handling of People. i

Dealing with emotions – anger and guilt As a carer, you’ll know that although caring can be very rewarding, it can also be hard work and very stressful. Remember that some of the negativity you may experience from time to time is a normal response to challenging circumstances. But if negative emotions build up too much they can become destructive. There are ways to manage your emotions before they get to this stage.

78


4/7/11

12:36

Page 79

Carers quite often feel guilty about not doing enough for the person they care for, or for having negative thoughts about their situation. If you experience feelings of guilt, try to analyse why exactly this is. Are you feeling guilty because you think you should be managing better? Think about whether the goals or tasks you are setting yourself are realistic. Do you need help with your caring? Consider talking to other carers, online or at a carers group meeting. You’ll soon realise that many others feel just the same as you. You may feel guilty about thinking horrible things about the person you care for, or treating them less well than you should. It’s not uncommon for carers, at times of stress, to have the urge to walk away from it all. It often helps to talk about your feelings with the person you care for. You may be surprised at how much they understand already. If this is too difficult, talk to other carers or telephone the MS Society Helpline. It’s important not to judge yourself. Talking through your feelings with another person is often the first step towards reducing their impact upon you.8 If you feel angry and frustrated, you might occasionally have angry outbursts against the person you are caring for. If you are regularly feeling angry and frustrated about your situation, maybe it’s time to talk to someone about getting more support. Are you having enough breaks from caring? Just a short break, relaxing or simply having ‘me time’ can be really beneficial. Look for ways of expressing your irritation away from the person you care for. Many carers let off steam on online discussion boards. The MS Society website has a discussion forum for carers: go to www.mssociety.org.uk/forums. Carers UK and the Princess Royal Trust for Carers also have discussion forums on their websites i . If there are particular situations or times of day that tend to spark your feelings of anger or frustration, think about how you can change your routine or find techniques for diffusing the tension. You may be feeling guilty about not being able to manage without help. Many carers struggle on for years before they accept the fact that they may need help. A little help now and then will enable you to recharge your batteries and give you more energy to continue caring. © MS Society 06/11

79


4/7/11

12:36

Page 80

Stress and depression We all experience stress from time to time. It’s part of modern life. However, your caring role can bring more than your fair share, and it’s important to know how to recognise stress and how to deal with it. Some people experience physical reactions to stress, such as shaking or hyperventilating (breathing faster and deeper than usual). If you are under a great deal of stress, over a period of time you may also experience: irritability or anger apathy, depression or anxiety lack of concentration loss of appetite or comfort eating loss of sex-drive excessive tiredness skin problems tense muscles and tension headaches heart palpitations

You should consider seeing your GP if stress is causing you any of these or other physical or emotional symptoms. In the longer term, if you do not deal with your stress it could lead to more serious conditions such as high blood pressure and heart disease. Your GP will be able to identify how your stress is affecting you, and will be in a position to offer you a range of options to help deal with it. In exceptional circumstances your doctor may prescribe medication, although it is usually better to explore how you can deal with the things that are causing you stress in the first place. Some practical things you might try include: taking regular exercise eating a healthy, balanced diet, rich in fruit and vegetables talking to friends, family, or other carers listening to music or relaxation CDs 80


4/7/11

12:36

Page 81

Other stress management techniques include counselling, psychotherapy and hypnotherapy. Complementary approaches include aromatherapy and reflexology and these may, if nothing else, provide a quiet, relaxed environment in which to wind down.

Recognising depression and how to deal with it For some people, continued stress and negative emotions can develop into full-blown depression. Many people feel scared and embarrassed when they first experience depression but remember – about one in five women and one in ten men get depression serious enough to need treatment at some point in their lives.8 If you are worried that you might have depression, ask yourself whether the negative feelings you are experiencing are interfering with your day-to-day life, and whether they are with you for long periods of time. If the answer to either of these questions is ‘yes’ it’s worth talking to your GP. Some of the symptoms of depression listed below are similar to those for general stress. Your GP or suitably qualified specialist will be able to make a definite diagnosis. low mood – often in the morning or last thing at night irritability, quick temper loss a loss of interest in activities that you might normally enjoy loss of self-confidence and ability to socialise with others lack of energy, tiredness and poor concentration difficulty in making decisions trouble sleeping loss of sex drive disturbed eating patterns – either loss of appetite or eating too much © MS Society 06/11

81


4/7/11

12:36

Page 82

a restless or agitated feeling a feeling of worthlessness or guilt thoughts about suicide The two main approaches to treating depression are medication such as antidepressants and counselling. Cognitive behavioural therapy can also help with managing depression. A person’s treatment will depend on the severity of their symptoms. If you feel you would benefit from talking to someone about your feelings, but don’t feel able to talk to those close to you, it may be helpful for you to talk to a counsellor, psychologist or psychotherapist. Your GP may be able to arrange this for you, particularly if you are experiencing depression. Some counsellors are based in GP surgeries, others will be independent. You can also find details of counsellors in your area through the British Association for Counselling and Psychotherapy i . The Samaritans offer a 24 hour telephone helpline for anyone experiencing feelings of depression or despair. i

Coping with loneliness and isolation Caring can be particularly isolating. As the condition of the person you care for develops and your caring responsibilities increase, other friends and family may find it difficult to cope themselves. They may withdraw, assuming that you will contact them if you need help. We all know how difficult it can be to contact someone we haven’t heard from for a while, so in many cases, contact can be lost altogether. If the person you are caring for has high care needs, it may be difficult for you to leave the home and to socialise as you did in the past. Giving up work can mean that you lose your work-based friendships, or have less in common with ex-colleagues when you do manage to meet. It can feel strange at first, but attending a support group (such as an MS Society branch or a carers group) can be a great help. It’s often difficult to talk about your life to people who are unconnected to the world of MS or caring. By joining a support group you may find that you can express your feelings 82


4/7/11

12:36

Page 83

and that you will be understood by others in similar circumstances. If you find it difficult to leave the house, consider one of the many online options for keeping in contact with others. The MS Society’s online discussion boards allow people with MS and carers to share experiences and feelings. There are many other examples of such forums, both within the UK and internationally. You may find you develop a network of friends from around the globe!

FURTHER READING Living with the effects of MS MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

Training for carers Some carers find it helpful to undertake some general training around being a carer. The ‘Caring with Confidence’ learning programme aims to give carers a better understanding of the issues they face and helps them to find new ways to tackle them. Free interactive online learning and self-study workbooks are available at www.caringwithconfidenceonline.co.uk. Group study sessions are also available in some areas – check with your local carers’ centre for more information. In England, the Expert Patients Programme also runs ‘Looking after ME!’ self-management courses for carers. To find out more, visit www.expertpatients.co.uk or call them on 020 7922 7860. The Expert Patients Programme also runs carers’ courses in Wales. For details, visit www.eppwales.org In Scotland the MS Society runs self-management courses for people with long-term conditions. Call 0131 335 4050 or visit www.mssocietyscotland.org.uk for details. We are not aware of any such courses at present in Northern Ireland, but Carers NI (part of Carers UK) are well placed to know about developments in this area. i © MS Society 06/11

83


4/7/11

12:36

Page 84

SECTION 6

Financial issues A frustrating fact for many carers is that the additional responsibilities that caring brings are accompanied by a much reduced income, often from having to give up work, reduce working hours, or cope with the increased costs of long-term disability or illness. A change in circumstances may mean that you have to claim benefits for the first time, and it is only when you start this process that you realise how complicated it can be.

84


4/7/11

12:36

Page 85

Disability, income-related and carers benefits Few of us know enough about the intricacies of the benefits system to be able to understand how it might apply to our own situation. There is help available however, and the best thing to do is seek advice. Below is a brief summary of the main benefits that are available. Some of these may apply to the person you care for, while others you may be eligible for.

Employment and Support Allowance (ESA) Employment and Support Allowance (ESA) is paid if someone’s ability to work is limited by ill health or disability. It came into effect on 27 October 2008. For new claimants after this time, it replaces both Incapacity Benefit and Income Support paid on the grounds of incapacity. ESA has much in common with these earlier benefits. It is composed of two allowances: contributory ESA (which is similar to Incapacity Benefit) and income-related ESA (which is similar to Income Support). The person you care for may be entitled to either one, or both, of these allowances. If someone already receives Incapacity Benefit or Income Support If the person you care for was already receiving Incapacity Benefit or Income Support paid on the grounds of incapacity when ESA was introduced, they will be reassessed for ESA. This is known as the ‘work capability assessment’. If they are found to have ‘limited capability for work’ they will be moved onto ESA. If not, they will need to consider claiming another benefit, such as Jobseeker’s Allowance, or appealing against the decision. The reassessment process started in April 2011, and it is expected that everyone will have been reassessed by 2014. Until the person you care for has been reassessed, they will continue to receive Incapacity Benefit or Income Support, rather than ESA. They will also continue to come under the rules and conditions which applied to these benefits. Though the majority of Incapacity Benefit and Income Support claimants should not be worse off on ESA, some groups of © MS Society 06/11

85


4/7/11

12:36

Page 86

claimants may be. If someone is in this position, once they have been moved onto ESA, they should receive ‘transitional protection’. This will bring their ESA up to the same level as their existing rate of Incapacity Benefit or Income Support. You can read more on ESA in the MS Society publication Benefits and MS available from the Information Team or to download from the website.

Disability Living Allowance (DLA) Disability Living Allowance (DLA) is for people under 65 who need help to look after themselves and/or to get around because of a long-term illness or disability. There are two components to this benefit: The care component – paid to people who need help to look after themselves with, for example, washing and dressing. It can be paid at one of three different rates: lower, middle or higher. If the person you care for receives the middle or higher rate of the care component, you may qualify for Carer’s Allowance. The mobility component – paid to people who, because of their illness or disability, have difficulties walking. It is paid at one of two rates: lower or higher. Getting the higher rate of the mobility component can mean that the person you look after can get a Blue Badge for their car from the local authority, exemption from road tax and possible access to the Motability Scheme (see pages 38 and 41).The income and savings of the person you care for will not affect their claim for DLA.

Attendance Allowance Attendance Allowance is for people aged 65 or over, who find it difficult to care for themselves because of a disability or long-term condition. The benefit is paid at one of two rates: The lower rate for people who have difficulties either during the day or at night 86


4/7/11

12:36

Page 87

The higher rate for people who have difficulties both during the day and at night As with DLA, the income and savings of the person you care for will not affect their claim for Attendance Allowance. Getting Attendance Allowance can also mean they receive extra Pension Credit, Housing Benefit, and Council Tax Benefit. If the person you care for receives Attendance Allowance, you may qualify for Carer’s Allowance.

Income Support Income Support is a means-tested benefit that works in the same way as income-related Employment and Support Allowance (ESA). To claim Income Support you will need to ring the Jobcentre Plus claim-line 0800 055 6688. You can also use the form available from your local Jobcentre Plus office.

Pension Credit Pension Credit is currently for people over 60, although the qualifying age is gradually being raised in line with changes to women’s state pension age. This comprises a Guarantee Credit, calculated in a similar way to Income Support, and it includes an extra element called the Savings Credit.

Carer’s Allowance If you are caring for someone who gets either Attendance Allowance or Disability Living Allowance care component at the middle or highest rate, you may be able to claim Carer’s Allowance. The person you care for does not have to live with you. To be eligible, you must: be aged at least 16 (there is no upper age limit) spend at least 35 hours a week providing care have net earnings of £100 a week or less not be in full-time education © MS Society 06/11

87


4/7/11

12:36

Page 88

Before you claim Carer’s Allowance always check to see if the person you care for receives the severe disability premium or addition as part of their Income Support, Housing Benefit, Council Tax Benefit, Pension Credit or Employment and Support Allowance (ESA). If they do, they may lose the premium or addition if you are awarded Carer’s Allowance. The rules are complicated, and it is advisable to seek further advice from a Citizens Advice Bureau i . Your local MS Society branch support officer may also be able to help. To claim Carer’s Allowance, you need form DS700, available from the Disability and Carers Service Benefit Enquiry Line (0800 88 22 00) or your local Jobcentre Plus office. You can also download a form from www.direct.gov.uk and search ‘carers’. If you are claiming Carer’s Allowance, you may be able to get this topped up by Income Support.

Your pension and Carer's Allowance You can still claim Carer's Allowance if you are over 65. However Carer's Allowance is reduced by the amount of the State Pension that you get and if your State Pension is worth more than the Carer's Allowance you may not receive any payment of the latter.

Sources of information and help As you can see from the brief details given above, the benefits system is very complicated indeed, with your entitlement to some benefits dependent upon your entitlement to others, your income, your age and your contribution records. Do seek advice to make sure you don’t miss out on much needed income. Carers UK produces a range of benefits factsheets. i The MS Society publications Benefits and MS and Claiming Disability Living Allowance are available free of charge by post or 88


4/7/11

12:36

Page 89

to download (www.mssociety.org.uk/ publications or call 020 8438 0799 weekdays 9am-4pm). The Government’s Benefit Enquiry Line – 0800 88 22 00 – provides general advice on benefits. Your local carers’ centre or carers’ outreach service should also be able to help you with detailed enquiries and can often help you to complete forms. You can find a useful overview of the benefits system on www.direct.gov.uk Your local Citizens Advice Bureau will be able to give you advice and help with the completion of forms.The Citizens Advice website ‘Advice guide’ provides information on your rights. i

Other financial help As well as making sure you are maximising your income with benefits, you may be able to reduce your outgoings by applying for: a reduction in your Council Tax bill help with health costs such as dental treatment financial help to adapt your home help with heating costs Talk to someone at your local advice centre or carers’ centre to explore these and other options for managing your income and outgoings. The MS Society can also provide grants to people with MS for essential items and services needed as a direct result of their MS, for which there is no health or social services funding available.

© MS Society 06/11

89


4/7/11

12:36

Page 90

Your future income Being a carer often means taking a break from paid employment and this can impact upon your future income – in terms of savings but also pension entitlement. For instance, do you know if you are keeping up your National Insurance contributions towards your State Pension? Does your current income allow you to pay into a personal or occupational pension? If you are receiving Carer’s Allowance and are of working age, you should also be receiving Class 1 National Insurance credits each week. These help with later claims for contributory ESA or State Pension. If you are not entitled to Carer’s Allowance, your pension rights can be protected by Carer’s Credit. More information is available on www.direct.gov.uk – search for ‘caring and pension’.

Managing on a reduced income If you are worried about getting into debt, or have built up some debts already, it is very important that you seek impartial advice as soon as you can. Be wary of the many companies out there offering what seems to be free and impartial advice about how to manage your current debts. They may have a financial incentive to make you take up certain products. There is a useful guide to debt and money issues on the www.direct.gov.uk website.

FURTHER READING Benefits and MS, Claiming Disability Allowance and Financial Assistance from the MS Society MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm) A series of guides to managing your money are available from the Money Advice Service i

90


4/7/11

12:36

Page 91

SECTION 7

If care needs increase This section explores what you can do if the person you care for becomes severely affected by MS. It covers a number of very sensitive and sometimes distressing topics, not all of which will apply to everyone affected by MS.

You can talk to the MS Helpline about any of these issues – call freephone 0808 800 8000, weekdays 9am-9pm or email [email protected] © MS Society 06/11

91


4/7/11

12:36

Page 92

Long-term residential care It can be difficult to focus on the possibility that long-term care may one day be required. Often the issue only arises when people are suddenly faced with the task of finding a suitable residential care home and perhaps also paying for it. In situations like this, many feel unprepared and find it very stressful. For most people, support to remain at home is the preferred option. Others find they are having trouble coping at home and want the security provided by residential care, where appropriate services and support are available. If a move into a care home becomes necessary, it is usual to have concerns and to find the prospect and process stressful and emotional. In fact, there can be many advantages to living in a residential community and many people find that they enjoy the social aspect of living with others in a similar situation. You may find it useful to talk to others about the many emotions that you will be feeling as you consider the option of residential care. It is not uncommon for carers to feel guilty and selfish for not ‘soldiering on’, but you have to think about what is best for you as well as the person you care for. It often helps to chat to families of other people with MS who are already in residential care, to find out how they coped early on. Do remember that just because the person you care for goes into residential care, you don’t stop caring for them. Many residential homes welcome daily support and contact between family carers and residents, with carers assisting paid care staff if they want to do so. The MS Society has published a useful guide to finding and paying for long-term residential care, which includes a pull-out checklist to help when you are choosing a care home.

FURTHER READING Residential care and your options MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

92


4/7/11

12:36

Page 93

Age UK and Counsel and Care both publish a range of factsheets about paying for care home fees i

Palliative care Palliative care supports people to have the best possible quality of life. It looks at all the needs that a person might have. This could be by managing any symptoms that cannot be cured, but also by taking into account psychological, spiritual and family needs. People used to only think of ‘palliative care’ as a part of cancer care, but increasingly, it’s also recognised that it can be helpful for people with other conditions, including MS.9, 10 Many people think it is only for someone near the end of their life. In fact, with a long-term condition such as MS, it can help at other times too. Palliative care can be provided in hospices, hospitals and at home. Many health and social care professionals take a palliative care approach to helping people with MS. Sometimes, specialist palliative care professionals might advise them on how best to manage overall care. Unfortunately, access to specialist palliative care depends on what services are available where you live. But wherever you are, you need a ‘specialist palliative care assessment’ to access these services. A GP, MS nurse of other health or social care professional should be able to make a referral for this. In some areas, you might be able to refer yourself for this assessment. Your Primary Care Trust (England), Health Board (Scotland and Wales) or Health and Social Care Trust (Northern Ireland) should have the contact details for a community palliative care team who can carry out the assessment. More information about palliative care is available from the National Council for Palliative Care. In Scotland, the Scottish Partnership for Palliative Care can help. i

© MS Society 06/11

93


4/7/11

12:36

Page 94

End-of-life care End-of-life care focuses on the care and treatment of people who are dying. It aims to be sensitive to personal, cultural and spiritual values, and to support carers, family and friends through the bereavement process. Professionals use three main documents to guide their work: Preferred Priorities of Care This is a document that the patient keeps with them if they are cared for in a number of different settings. It details their preferences about the care they would like to receive and their choices about where they would like to be when they die. Gold Standards Framework This tool is used by many health care professionals across the UK and aims to optimise the care for patients nearing the end of life, promoting effective joint working between primary care teams and specialist staff. Liverpool Care Pathway This tool is based upon best practice within the hospice movement and focuses on the care of patients in the last days or hours of life. It includes symptom control guidelines and information for relatives. Effective palliative and end-of-life care can remove the need for a move to a nursing home or hospital setting in the latter stages of someone’s life. Talking to someone about the care they want to receive at the end of their life can be difficult. Dying Matters has advice on how to talk about death and dying. i

Hospice care Within hospices you will find a range of palliative care services, such as pain control, symptom relief, skilled 94


4/7/11

12:36

Page 95

nursing care, counselling, complementary therapies and spiritual care, as well as ongoing support for family and friends. Staff and volunteers work in multi-professional teams to provide care based on individual need and personal choice. An alternative to residential hospice care may be to have hospice care at home. Specially trained nurses and doctors visit patients in their own home, providing the medical and nursing care that they would receive if they were an in-patient. This makes it possible for people to spend the last weeks or months of their illness in familiar surroundings, with their family and friends around them. To learn more about options for palliative and end-of-life care in your area, contact your GP or MS nurse. Appropriate specialised care can provide comfort in the last few days of life wherever someone wishes to be: a hospital, a hospice, residential care or at home.

Planning ahead – the legal paperwork Power of attorney A power of attorney is a way of planning ahead so that your wishes are respected, if at some time you cannot express those wishes. When you set up a power of attorney, you choose people you trust to look after your affairs and take decisions on your behalf. It is only used if you can no longer make those decisions yourself. It’s a sort of insurance – you might never need it, but if you do, it’s a vital way to get your wishes heard. In England and Wales, the documents you complete are called Lasting Power of Attorney (LPA). There are two types of LPA that you might want to make. In one, you write down your wishes for your ‘health and welfare’. The other covers ‘property and financial affairs’. In Scotland, documents called a Welfare Power of Attorney and a Continuing Power of Attorney work in a similar way. In Northern Ireland, you can set up an Enduring Power of Attorney. This only covers financial matters, not personal care arrangements. © MS Society 06/11

95


4/7/11

12:36

Page 96

A Power of Attorney becomes a legal document once it is registered with the Office of the Public Guardian (or the Office of Care and Protection, in Northern Ireland). i More about making a Power of Attorney i For England and Wales, the Office of the Public Guardian has a series of guides on Lasting Power of Attorney. For Scotland, the Office of the Public Guardian (Scotland) has a series of guides on Power of Attorney. For Northern Ireland, the Office of Care and Protection website has a leaflet on Enduring Power of Attorney. Citizens Advice also has information. If you don’t have access to a computer, call the UK Information Team on 020 8438 0799 or the MS Society Northern Ireland on 028 9080 2802. Advance decision to refuse treatment As the name suggests, an ‘advance decision to refuse treatment’ lets you record in advance your wish to refuse specific treatments in specific circumstances. Like a power of attorney, an advance decision to refuse treatment (ADRT) would only apply if there comes a time when you can’t make or communicate your decision. In England and Wales, a valid ADRT is legally binding on a health care professional. ADRTs are covered by the Mental Capacity Act, so health care professionals must act according to your wishes. However, the ADRT cannot direct anyone to do something illegal. It cannot, therefore, be an instruction to actively shorten life – euthanasia and assisted suicide are illegal in every nation in the UK. In Scotland and Northern Ireland, an ADRT does not have the same legal standing – ADRTs are not covered by the Adults with Incapacity (Scotland) Act 2000, and there is no equivalent law in Northern Ireland yet. However, your wishes in the ADRT should be taken into account by medical professionals. And if they are ignored, it might be considered illegal under existing law. 96


4/7/11

12:36

Page 97

Statement of wishes and preferences A statement of wishes and preferences can cover areas of life that are not included in a power of attorney or advance decision to refuse treatment. You might use one of these statements to explain your feelings, beliefs and values. If you can’t express these in future, this can help the people caring for you to make the right choices on your behalf. They are sometimes referred to as ‘personal statements’ or ‘advance statements of wishes and preferences’. (In Scotland, a ‘personal statement’ is not the same as an ‘advance statement’. An ‘advance statement’ in Scotland comes under the Mental Health Act and specifically applies to treatments for a mental health issue.) A statement of wishes and preferences is not legally binding, but care professionals must take into account what you say in the statement. It only applies if you can’t make these decisions at the time you need the care. You can write down the statement or make a sound recording of you speaking it. You could even simply tell your wishes to family and carers, but writing or recording it is a better way to be sure your views are heard.

FURTHER READING Support and planning ahead – for people severely affected by MS Living with the effects of MS MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

© MS Society 06/11

97


4/7/11

12:36

Page 98

Writing a will If someone dies without leaving a will it can cause problems for surviving relatives, sometimes leading to expensive legal costs if they need to be resolved. In most cases it is advisable to have a will drawn up with advice from a specialist solicitor who can explain the potential consequences of any bequest. Within a will, an individual can choose the people who they want to be responsible for managing the distribution of their assets when they die – the ‘executors’. If a will is not made, a person’s estate will be passed on according to a scheme laid down in law.

98


4/7/11

12:36

Page 99

SECTION 8

When death occurs The practical information in this section would apply to anyone dealing with the death of a loved one. When someone dies there are many decisions and arrangements to be made. Unfortunately these often have to be made at a time of personal distress. This section summarises what needs to be done when someone dies and assumes that you are their next of kin.

You can talk to the MS Helpline about any of these issues – call freephone 0808 800 8000, weekdays 9am-9pm or email [email protected] © MS Society 06/11

99


4/7/11

12:36

Page 100

If the person you care for dies in hospital, their body will be stored in the hospital mortuary and a member of staff will contact you to inform you of the death. The body will remain in the mortuary until you, or someone acting on your behalf, arranges for it to be taken away. Most funeral directors have a chapel of rest, where the deceased person can be placed until the funeral. If the person you care for dies at home and the death was expected, you should contact their GP who will need to certify the cause of death. If the person you care for dies in the middle of the night, you can call the out-of-hours GP service. It is not unusual for a doctor to wait until the following morning before visiting the home. They will provide you with a medical certificate stating the cause of death and a formal notice, recording that the medical certificate has been signed and giving instructions on how to register the death.

Registering the death You will need to register the death with the Registrar of Births, Marriages and Deaths for the sub-district in which it occurred (or, in Scotland, with any Registrar). You can find the Registrar in the phone book or on the www.direct.gov.uk website. In most cases this needs to be done within five days (eight, in Scotland). The registrar will give you a Certificate for Burial or Cremation (in Scotland, a Certificate of Registration of Death). The funeral director will need this before the funeral can take place. You will also be given a Certificate of Registration of Death (in Scotland, a form 334/S1) which is for social security purposes. If it applies, you should complete the certificate and hand it to your Jobcentre Plus or social security office. You can also buy one or more copies of the death certificate at this time. You will need these for sorting out the person’s affairs – such as pension claims, insurance policies, savings bank certificates and premium bonds. 100


4/7/11

12:36

Page 101

Arranging the funeral If the deceased person made a will, check to see whether they may have given specific requests about the funeral arrangements. If you arrange for a funeral, you are responsible for paying the bill so first check where the money will come from and if there will be enough. It is possible to organise a funeral without the aid of a funeral director, but it is advisable to contact your local Cemeteries and Crematorium Department (part of the local authority) for advice and guidance. However, most people use a funeral director and friends or family may be able to suggest a particular firm to go with. Alternatively, most local firms will be listed in the phone directory. Their charges can vary considerably and it is worth contacting more than one company. If there is to be a service or ceremony, contact the appropriate person for the religion or belief concerned. The funeral director should be able to advise you if you are not sure how to do this. You do not have to hold a religious service and you may prefer to hold your own non-religious alternative. Your funeral director will be able to advise you about the processes required for a cremation or a burial.

Paying for the funeral Funerals can be expensive so make sure that you know where the money for the funeral will come from before making any arrangements. If you are getting any benefits you may be able to get a payment from the Social Fund. If no one is able or willing to arrange and pay for the funeral, the local council or health authority may do so, but only where the funeral has not already been arranged. It may be possible to have part of the deceased person’s savings released to pay for the funeral, for example from a building society or National Savings account. You will be asked for appropriate documents, usually including the death certificate. The costs may be covered by a life © MS Society 06/11 101


4/7/11

12:36

Page 102

insurance policy or prepaid funeral. If the deceased person had paid into an occupational or personal pension, there may be a lump sum payable towards the costs of the funeral. Payment from life insurance policies are usually paid out after the estate has been settled, but it is possible for a limited sum to be paid on evidence of death, to help cover funeral costs.

FURTHER READING Department for Work and Pensions Leaflet D49 – What to do after a death in England and Wales www.dwp.gov.uk The Scottish Government publication – What To Do After a Death in Scotland: Practical Advice for Times of Bereavement www.scotland.gov.uk

Bereavement Feelings of grief and loss affect people in many different ways. Usual emotions include shock and disbelief (even if a death is anticipated), depression and apathy. When someone who has been ill for some time dies it is also not uncommon to feel a sense of relief. This can then lead to feelings of guilt. However, relief is a normal reaction. Many carers of people with MS experience ‘grieving’ throughout the illness, as each change in the person’s condition takes its toll. Most importantly, there is no ‘right’ way to feel when someone you have cared for has died. It is very important that you allow yourself adequate time to grieve. Only you will know how much time you will need. Do not feel pressurised by others to ‘move on’ sooner than you wish. Cruse Bereavement Care and Cruse Bereavement Care Scotland offer free and confidential help to bereaved people across the UK i . They produce a range of booklets on coping with grief. You may also find the information on the BBC website helpful: www.bbc.co.uk/health – click on ‘emotional health’. 102


4/7/11

12:36

Page 103

Talking about it Many people find that it helps to talk about these feelings with other people. You may want to talk to a friend or family member, or someone who has been in a similar position. You might benefit from finding a support group. Your MS Society branch may know of a local group. Alternatively, ask your GP for details. Professional counselling It might also be helpful to talk to a professional counsellor. There are a number of voluntary agencies and private practitioners that offer counselling, and your GP should be able to refer or point you in the right direction. You can also find details of counsellors in your area through the British Association for Counselling and Psychotherapy. i

FURTHER READING Past Caring by Audrey Jenkinson. A book on caring for those who have suffered bereavement. ISBN: 09544233-6-4. Available online at http://books.google.co.uk Living with the effects of MS MS Society publications are available free of charge by post or to download (www.mssociety.org.uk/publications or call 020 8438 0799 weekdays 9am-4pm)

© MS Society 06/11 103


4/7/11

12:36

Page 104

Younger family members Many adults exclude children and young people from conversations about death as a way of seeking to protect them. However, many children cope remarkably well and can in fact be a source of support for their parents at this emotional time. But they will have their own questions, and it is important to try to reassure them if you can and answer their questions. Each child will respond differently to the death of a loved one. Don’t be surprised if your child finds it difficult to express how they are feeling. There may be a childhood bereavement service in your area. If you have access to the internet, Winston’s Wish (www.winstonswish.org.uk) is a helpful site for children and young people. Also online, for teenagers there’s RD4U (www.rd4u.org.uk), which is part of Cruse Bereavement Care's Youth Involvement Project. Young Carers (www.youngcarers.net), part of the Princess Royal Trust for Carers, has advice and support for children and young people who have lost someone close. i

104


4/7/11

12:36

Page 105

SECTION 9

Life after caring Whether caring ends because of bereavement, a move into residential care or the breakdown in a relationship, individuals who have been caring have their own needs that can often be neglected. You may need help or advice around a number of issues, such as financial help if your benefits have stopped, employment advice if you have been out of the workplace for a while, or general support to help you to talk through your feelings and concerns. It’s not unusual to need some support to cope with, and adapt to, life after caring.

You can talk to the MS Helpline about any of these issues – call freephone 0808 800 8000, weekdays 9am-9pm or email [email protected] © MS Society 06/11 105


4/7/11

12:36

Page 106

Retraining and going back to work The idea of going back to work after a long break can seem very daunting indeed, but there are many sources of advice and support to help you consider your next steps. Contact your local carers’ centre, for example. They will know of local training opportunities. They may even provide training themselves. Or talk to an adviser at your local JobCentre Plus. The MS Society’s website includes useful information for carers contemplating training or going back to work. Carers Direct also has information about work and study. i One of the problems many carers face when it comes to retraining is paying for course costs. Carers on a low income may go to the National Extension College (NEC) to get onto the Equal Access to Open Learning (EATOL) scheme. This is a distance learning college offering a variety of courses. i You may also be able to get a Professional and Career Development Loan. For more information go to www.direct.gov.uk – search ‘career development loan’. Further advice on careers and funding is also available from: i In England Next Step In Wales Careers Wales In Scotland Careers Scotland In Northern Ireland Careers Service NI The MS Society’s Carers Opportunities Fund also offers grants for course fees and related costs in England, Wales and Northern Ireland. Contact the MS Society Scotland for details of support available there.

106


4/7/11

12:36

Page 107

City and Guilds has developed online learning opportunities for carers. ‘Learning for Living’ is an online learning programme designed to meet carers’ and recent former carers’ needs for training in personal development and confidence building. The programme builds on the wealth of experience informal carers have gained as a result of their caring role. i Another organisation, learndirect, has developed a large number of online courses, and has a network of centres with advisers who can give information on a huge range of courses across the UK. i

Building up your social life Even though some friendships may have faded away since you became a carer, there may be opportunities for developing new friendships. Local libraries as well as the internet are both good places to discover what’s going on in your local area, whether you are interested in restarting an old hobby, finding a new one or getting involved in a local voluntary group. Many carers’ centres offer opportunities to former carers to get together and to share experiences about how they are getting on since their caring came to an end. It’s easy to say that friendships and relationships often develop when you least expect them, but that is so often the case.



4/7/11

12:36

Page 108

Listing main legislation More detailed information on legislation can be found at the following sources: Carers (Equal Opportunities) Act (England and Wales) www.direct.gov.uk and search ‘carers rights’ Equality Act (England, Scotland and Wales) www.equalityhumanrights.com and search ‘equality act’ Flexible working legislation (UK wide) www.direct.gov.uk and search ‘flexible working’

English legislation www.dh.gov.uk Has links to: Direct payments Continuing care Social care eligibility criteria Fairer charging guidance Carers strategy NHS and social care complaints

Scottish legislation www.scotland.gov.uk/topics/health Has links to: Carers and Young Carers Strategy for Scotland 2010-2015 Community Care and Health (Scotland) Act 2002 National Care Standards Self-directed support www.scotland.gov.uk/topics/justice Has link to: Adults with Incapacity (Scotland) Act 2000

108


4/7/11

12:36

Page 109

www.sehd.scot.nhs.uk Has details of continuing health care policy – search ‘continuing health care’ NHS and social care complaints

Welsh legislation www.legislation.gov.uk/browse/wales Has links to: Social Care Charges (Wales) Measure 2010 Rights of Children and Young People (Wales) Measure 2011 Carers Strategies (Wales) Measure 2010 www.wales.gov.uk/health Has details of the social services strategy for Wales (Fulfilled Lives, Supportive Communities), Welsh guidance on direct payments, carers assessments and home care

Northern Ireland legislation www.nidirect.gov.uk Has links to: Carers Rights Money Matters and Carers Carers health and taking a break Caring and support services Carers and employment Caring for a disabled child www.equalityni.org Has links to: Disabillty Discrimination Act Employment Act 2002 Carers Act and Direct Payments Act NI 2002 www.dhsspsni.gov.uk Search ‘Carers and Direct payments Act NI2002’ © MS Society 06/11 109


4/7/11

12:36

Page 110

Patient rights for hospital discharge (England) The Department of Health’s Discharge from Hospital: pathway, process and practice (www.dh.gov.uk) includes a number of standards for discharge. Patients being discharged from hospital have the right:

· to full information on their diagnosis and the assessment of their health and social needs in preparation for discharge

· to be fully involved in planning their own discharge, together with a relative, carer or friend as appropriate

· for the discharge plan to start on or before admission where possible

· to full information on the services available in the community relevant to their care

· to full information on short or long-term nursing or residential care, including financial implications

· to be given an appropriate contact number where they can get help or advice on discharge

· to be given a clear, legible discharge letter detailing the support services provided for them (where appropriate)

· to full information on health authority eligibility criteria for continuing care

· the discharge planning team to be available as a point of contact to offer support and advice to patients, carers, statutory and voluntary agencies

· information on advocacy support · to have access to the trust complaints procedure and any complaint regarding their discharge arrangements investigated and a full explanation given

· if still not satisfied, to be given access to the health service commissioner

110


4/7/11

12:36

Page 111

Useful organisations Action for Advocacy Telephone 020 7921 4395 www.actionforadvocacy.org.uk Age UK Advice line 0800 169 6565 www.ageuk.org.uk Association of British Neurologists Telephone 020 7405 4060 www.theabn.org Backcare Helpline 0845 130 2704 www.backcare.org.uk Bladder and Bowel Foundation Nurse helpline: 0845 345 0165 Telephone: 01536 533 255 www.bladderandbowelfoundation.org British Association for Counselling and Psychotherapy Helpdesk 01455 883316 (to find a counsellor) Telephone 01455 883300 www.bacp.co.uk Care Information Scotland Helpline 0845 001 001 (Monday to Friday, 10am-8pm, Saturday, 10am-4pm) www.careinfoscotland.co.uk Care and Social Services Inspectorate Wales Telephone 01443 848450 www.cssiw.org.uk Care Quality Commission (England) Telephone 03000 616161 www.cqc.org.uk Careers Scotland Telephone 0845 8502502 www.careers-scotland.org.uk



4/7/11

12:36

Page 112

Careers Wales Telephone 0800 100 900 www.careerswales.com Careers Service Northern Ireland Telephone 028 9044 1781 www.careersserviceni.com Carers Direct Helpline 0808 802 0202 (Monday to Friday, 8am-9pm, Saturday to Sunday, 11am-4pm) www.nhs.uk/carersdirect Carers Northern Ireland Telephone 028 9043 9843 www.carersni.org Carers Scotland Telephone 0141 445 3070 www.carersscotland.org Carers UK Telephone 020 7378 4999 www.carersuk.org Carers Wales Telephone 029 2081 1370 www.carerswales.org Citizens Advice Telephone 020 7833 2181 (not an advice line) www.citizensadvice.org.uk www.adviceguide.org.uk Citizens Advice Scotland Telephone 0131 550 1000 (not an advice line) www.cas.org.uk City and Guilds Telephone 0844 543 0000 www.cityandguilds.com Counsel and Care Advice line 0845 300 7585 www.counselandcare.org.uk

112


4/7/11

12:36

Page 113

Crossroads Care Telephone 0845 450 0350 www.crossroads.org.uk Crossroads Northern Ireland Telephone 028 9181 4455 www.crossroadscare.co.uk Crossroads Scotland Telephone 0141 226 3793 www.crossroads-scotland.co.uk Cruse Bereavement Care Helpline 0844 477 9400 Telephone 020 8939 9530 www.cruse.org.uk Cruse Bereavement Care Scotland Telephone 0845 600 2227 www.crusescotland.org.uk Department of Health (England) Telephone 020 7210 4850 www.dh.gov.uk Department of Health and Social Services (Wales) Telephone 029 2037 0011 www.wales.gov.uk/health Department of Health, Social Services and Public Safety (Northern Ireland) Telephone 028 9052 0500 www.dhsspsni.gov.uk DIAL UK Telephone 01302 310123 www.dialuk.info Directory of Social Change Telephone 08450 777707 www.dsc.org.uk Disability Law Service Telephone 020 7791 9800 www.dls.org.uk



4/7/11

12:36

Page 114

Disabled Living Foundation Helpline 0845 130 9177 www.dlf.org.uk Dying Matters www.dyingmatters.org Equality Commission for Northern Ireland Telephone 028 9089 0890 www.equalityni.org Equality and Human Rights Commission Helpline 0845 604 6610 (England) Helpline 0845 604 5510 (Scotland) Helpline 0845 604 8810 (Wales) www.equalityhumanrights.com Forum of Mobility Centres Telephone 0800 559 3636 www.mobility-centres.org.uk learndirect Telephone 0800 101901 www.learndirect.co.uk learndirect Scotland Telephone 0800 100 9000 www.learndirectscotland.com Leonard Cheshire Disability Telephone 020 3242 0200 www.lcdisability.org Money Advice Service Telephone 0300 500 5000 www.moneyadviceservice.org.uk Motability Telephone 0845 456 4566 www.motability.co.uk National Centre for Independent Living Telephone 020 7587 1663 www.ncil.org.uk National Council for Palliative Care Telephone 020 7697 1520 www.ncpc.org.uk 114


4/7/11

12:36

Page 115

National Extension College Telephone 0800 389 2839 www.nec.ac.uk Next Step Telephone 0800 100 900 http://nextstep.direct.gov.uk Northern Ireland Ombudsman Telephone 0800 343424 www.ni-ombudsman.org.uk Nursing Homes Funding Agency Advice line 0800 998833 www.nhfa.co.uk Office of the Public Guardian Telephone 0300 456 0300 www.direct.gov.uk – search ‘Office of the Public Guardian’ Office of the Public Guardian Scotland Telephone 01324 678300 www.publicguardian-scotland.gov.uk Patients Association Helpline 0845 608 4455 www.patients-association.com Parliamentary and Health Service (England) Ombudsman Telephone 0345 015 4033 www.ombudsman.org.uk Princess Royal Trust for Carers Telephone 0844 800 4361 www.carers.org Public Services Ombudsman for Wales Telephone 01656 641150 www.ombudsman-wales.org.uk Regulation and Quality Improvement Authority (Northern Ireland) Telephone 028 9051 7500 www.rqia.org.uk



4/7/11

12:36

Page 116

Relate Telephone 0300 100 1234 www.relate.org.uk Relationships Scotland Telephone 0845 119 2020 www.relationships-scotland.org.uk Ricability Telephone 020 7427 2460 www.ricability.org.uk Royal College of Psychiatrists Telephone 020 7235 2351 www.rcpsych.ac.uk Samaritans Telephone 08457 909090 (24 hours, seven days a week) www.samaritans.org Scottish Government – Health and Social Care Telephone 08457 741741 www.scotland.gov.uk/topics/health Scottish Partnership for Palliative Care Telephone 0131 229 0538 www.palliativecarescotland.org.uk Scottish Public Services Ombudsman Telephone 0800 377 7330 www.spso.org.uk Shared Care Scotland Telephone 01383 622462 www.sharedcarescotland.org.uk Social Care and Social Work Improvement Scotland Telephone 0845 600 9527 www.scswis.com Update (Disability information for Scotland) Helpline 0131 669 1600 www.update.org.uk Vitalise Telephone 0845 345 1970 www.vitalise.org.uk 116


4/7/11

12:36

Page 117

References 1 Kalsi, V. and Fowler, C. J. (2005) Therapy insight: bladder dysfunction associated with multiple sclerosis. Nature Clinical Practice, 2(10), 492-501. 2 Hussein, I. and Fowler, C. J. (2000) The cause and management of bladder, sexual and bowel symptoms. In: C. P. Hawkins and J. S. Wolinsky (eds.) Principles of treatments in Multiple Sclerosis. Oxford, Butterworth-Heinemann. 3 Chia, Y. et al. (1995) Prevalence of bowel dysfunction in patients with multiple sclerosis and bladder dysfunction. Journal of Neuroimmunology, 242, 105-8. 4 Chiarvalloti, N. D. and DeLuca, J. (2003) Assessing the behavioral consequences of multiple sclerosis: an application of the frontal systems behaviour scale (Fr S BE). Cognitive and Behavioural Neurology. 2003. 16(1), 54-67. 5 Durazzo, T.C, et al. (2007) Chronic cigarette smoking and heavy drinking in human immunodeficiency virus consequences for neurocognition and brain morphology. Alcohol. Nov; 41(7): 489-501. Epub 2007 Oct 17. 6 Foley, F. W. et al. (2001) Rehabilitation of intimacy and sexual dysfunction in couples with multiple sclerosis, Multiple Sclerosis. 7, 417-21. 7 From the NHS Choices website www.nhs.uk/livewell/goodfood/pages/healthyeating.aspx (Accessed 20.04.11). 8 Minden, S. (1999) Treatment of mood and affective disorders. In: Rudick,K. and Goodkin, D. (eds.) Multiple Sclerosis Therapeutics. London and New York, Martin Dunitz Taylor & Francis Group, pp.517-41. 9 Edmonds, P. et al. (2010) Palliative care for people severely affected by multiples sclerosis: evaluation of a novel palliative care service. Multiple sclerosis, 16(5), 627-36. 10 European MS Platform (2006) Palliative care among people severely affected with multiple sclerosis. Brussels, EMSP. (www.ms-in-europe.com/w3p_dokumentarchiv/5palliativecare08.pdf)



Notes

118

4/7/11

12:36

Page 118


4/7/11

12:36

Page 119

MS Society Multiple sclerosis (MS) is the most common disabling neurological disorder affecting young adults and we estimate that around 100,000 people in the UK have MS. MS is the result of damage to myelin – the protective sheath surrounding nerve fibres of the central nervous system. This damage interferes with messages between the brain and other parts of the body. For some people, MS is characterised by periods of relapse and remission while, for others, it has a progressive pattern. For everyone, it makes life unpredictable. The MS Society is the UK’s largest charity dedicated to supporting everyone whose life is touched by MS. We provide a freephone MS Helpline, grants for home adaptations, respite care and mobility aids, education and training, support for specialist MS nurses and a wide range of information. Local branches cater for people of all ages and interests and are run by people with direct experience of MS. The MS Society also funds around 80 vital MS research projects in the UK. Membership is open to people with MS, their families, carers, friends and supporters. You can help the work of the MS Society by: – becoming a member – making a donation – offering your time as a volunteer

© MS Society 06/11


4/7/11

12:36

Page 120

MS National Centre 372 Edgware Road London NW2 6ND Telephone 020 8438 0700 [email protected] MS Society Scotland National Office Ratho Park 88 Glasgow Road Ratho Station Newbridge EH28 8PP Telephone 0131 335 4050 [email protected] MS Society Northern Ireland The Resource Centre 34 Annadale Avenue Belfast BT7 3JJ Telephone 028 9080 2802 [email protected] MS Society Cymru Temple Court Cathedral Road Cardiff CF11 9HA Telephone 029 2078 6676 [email protected] National MS Helpline Freephone 0808 800 8000 (weekdays 9am-9pm) www.mssociety.org.uk [email protected] Multiple Sclerosis Society. Registered charity nos 1139257 / SC041990. Registered as a limited company in England and Wales 07451571.

GI08/0611