Advanced MS Advanced handbook a carers
Advanced MS a carers handbook We’re the MS Society. Our community is here for you through the highs, lows and everything in between. We understand what life’s like with MS. Together, we are strong enough to stop MS.
We rely on the generosity of people like you to fund our vital work. If you would like to make a donation, you can do so by:
•• Calling us on: 0300 500 8084. Lines are open Monday to Friday, 9am – 5pm •• Visiting us at: mssociety.org.uk/donate •• Posting your donation to: MS Society, National Centre, 372 Edgware Road, London NW2 6ND. Please make cheques payable to the ‘MS Society.’
2 Advanced MS - a carers handbook Contents A word from Liz, whose husband has advanced MS 8
Five things to know 9
About this handbook 11
What do I need? 12
I want to know more about this stage of MS 13
• local groups 14
• updates on drugs and treatments for symptoms 16
How severe might MS get? And how fast? 18
How might our lives change? 22
• when relapsing MS becomes progressive MS 22
• the impact on our relationship 24
• intimacy and sex 26
• other ways MS can affect us 26
• why do we carry on? 28 The juggling act 31
• caring when you’re in work 32
Looking after myself 37
• feelings I might struggle with 38
• is it time for help? 39
• am I depressed? 40
• me and my GP 43
• my back 43
I need a break 47
Meet the medical team 53
• who’s who? 54
• being listened to 61
• at appointments 62
• access to medical records 62
• ‘Continuing Healthcare’ 63
• contact details for medical staff 66-71
4 Advanced MS - a carers handbook Managing three common symptoms 72
• bladder 72
• bowel 75
• pressure ulcers 77
Hospitals 80
• getting ready for hospital 81
• coming home 82
• information to give to hospital staff 86-89
• information for paid carers in the patient’s home 90-92
Equipment and technology 95
• getting equipment and paying for it 95
• pay no VAT 99
• equipment for moving someone 100
• bathing 102
• using the toilet 102
• alarms, telecare and other technology 104
Advanced MS - a carers handbook 5 Adaptations to the home 108
• Disabled Facilities Grants 110
Help with moving around 113
• wheelchairs 113
• public transport 119
• Motability 120
Social care – getting help from the council 121
• our social care package 124
• tips for self-funders 125
My carer’s assessment 127
I want to complain or appeal 130
• I’m not happy with the GP 133
• I want a second opinion 134 Money and benefits 135 • Carers Allowance 136 • other benefits and sources of money 139
6 Advanced MS - a carers handbook • grants from the MS Society and other places 141-143 • benefits and hospital stays 142 • prescription charges 144 • help with heating costs 144 • help with Council Tax 146 • personal budgets and direct payments 147 Thinking ahead 149 • planning for emergencies 149 • the tipping point 149 • going into a residential care home 150 • palliative care 153
• legal matters 153
• the end of life 160
• life after caring 163
Useful organisations 165
New words explained 175
Advanced MS - a carers handbook 7 A word from Liz, whose husband has advanced MS
One of the biggest challenges is Walk the dog, meet a friend for coffee, when to help my husband Neil go to the gym, have a long bath … keep his independence. It’s the physical demands as well He wants to do everything for as the emotional ones. You’re himself, but I have to be realistic exhausted from lifting. But then about when to step in and take you have to cook dinner, get kids over. He doesn’t always agree. It’s to bed and so on. And there’s no resulted in difficult conversations rest when you feel ill. to reach a compromise. But they were needed for his safety. Prioritise what’s important. Only do so much in one day. Who Another challenge is juggling cares if your house isn’t tidy everything. I’m Mum, wife, the today? It can wait. main worker, cook, cleaner, DIY and car maintenance specialist, Nothing comes to you. You have finance officer and homework to do things for yourself. Research club. Now add ‘carer’ and those into help you can get. You’ll find responsibilities! lots of ideas in this guide. Don’t be embarrassed to get help. My advice is: don’t feel bad if you have bad days. You’re human, Most importantly, talk to people. not super human! It gets to us Join MS and carers groups, all sometimes. Don’t bottle it in. including ones on social media. Realise you’re just as important. We shied away for years, but it was And never feel guilty. the best thing we did. A problem shared is a problem halved. Make time for yourself. It’s easier said than done, but important. 8 Advanced MS - a carers handbook Five things to know
You’re not Superman or Superwoman. Don’t feel you have to fix 1 everything yourself
Carers often get stressed or depressed because they don’t look for help - or accept it. Decide what your limits are and what you 2 need help with. Then ask for it
Over time things will get more of a challenge. You might not be able to count on friends and family for help. So finding other 3 sources of support is really important
Caring brings out strengths and abilities you never thought you had. Feel pride in what you do well. Don’t feel guilty about things 4 that go less well
Get help to have breaks before you ‘burn out’. This booklet has ideas on how to look after your own needs. Then you’ll be in a 5 better position to look after the person you care for and your family
Advanced MS - a carers handbook 9
About this handbook
This guide is for family, already, you can dip into this partners or friends caring for guide and get valuable tips. someone who has advanced If you’re new to this stage of MS, multiple sclerosis (MS). hopefully it can help you prepare for what the future might bring, They are ‘severely affected’ by their MS. This means: Being there for someone with MS is an incredibly valuable thing to •• they’re usually very restricted do, with its own rewards. But it in how much they can move can have a major impact on you around and your family. •• they rely a lot, or completely, on you and other people for We’ve talked to carers about how their everyday care they manage. This handbook •• they’ve got many symptoms, brings into one place what at the same time. These are they’ve learned. complicated to deal with and If the person with MS in your life aren’t going to go away isn’t this badly affected, we have another booklet called ‘Supporting ‘Advanced MS’ isn’t a separate someone with MS’. Page 178 has type of MS. It can happen when details of how to get a copy. someone’s had progressive MS a long time or if their MS is very active. One last thing. Where you see a word in bold in this booklet, turn When the advanced stage of MS to the back to find it explained. is reached, as a carer you’ll need much more support than before. There you’ll also find where you can get more help, such as from the MS If you’ve been caring for someone Helpline on 0808 800 8000. in this position for a few years
Advanced MS - a carers handbook 11 What do I need?
What you need to support the (such as breaks and things person in your life with MS is that ease the pressure and individual to you. There’s no isolation) ‘one size fits all’ answer. •• help when relationships become difficult MS is unpredictable, so what you •• to be listened to, for example, by need will change. You might think doctors that what you need is the same •• to have other people value the as what the person you care for support they give needs. But try to separate out your own needs and not lose sight Inside this handbook you should of them. find a ‘Carers assessment checklist’. That’ll help you work out in more Carers have told us they need*: detail what help you need. But the key is to build a network of people •• information and advice to help you. about advanced MS •• practical support, including “I’d like help coming to help with money and care terms with my wife’s •• emotional support, from condition, First Aid and friends, family or someone like how to pick her up a counsellor safely after a fall, •• ways of sharing experiences which is quite regular.” with people in the same boat Jerry
•• ways of solving problems, * From a 2016 MS Society survey and a coping better or seeing things 2017 study by Queen Margaret University differently (such as help to (‘Scoping the Needs of Families and Carers accept the situation they’re in) of People with Multiple Sclerosis’). Quotes in this guide come from these two studies •• help to look after themselves and carers who helped write this handbook. 12 Advanced MS - a carers handbook I want to know more about this stage of MS
Keeping informed can As MS becomes more advanced help you feel you’re doing or ‘progresses’, it becomes less something to support yourself about taking treatments like a disease modifying therapy (DMT) and the person you care for. that can slow it down. MS is unpredictable but having information about what’s Instead MS becomes more about: happening, or what might happen • medical care one day, can help you worry less. • •• managing long-term During the early stages of MS symptoms (and learning skills carers might avoid seeking out lots you need for this) of detailed information. They might •• getting social care services avoid calling themselves a ‘carer’. working together (including respite or residential care) This can help them feel life is carrying on as normal. They might •• mobility issues feel they’re protecting themselves •• getting support from a and the family from harsh facts. network of people who can help, including other carers But as MS gets more severe, doing •• and looking after your this becomes less of an option. own health (physical and Information can be especially emotional) good to have when relapsing Hands-on help from other people MS changes to secondary is probably most useful. But you’ll progressive MS. Read more probably also need more detailed about this on page 22.
Advanced MS - a carers handbook 13 information about symptoms and Local groups how to manage them. This guide You can get information and points you in that direction. support from your local carers group or MS Society group. “My wife has primary progressive MS. You’ll discover and share I’m only learning about valuable things that other the disease carers have already found out. as I go along. They’ll respect and value what I’d like more information you’re doing. about what to expect or an information Some groups meet during the day package explaining which is a problem if you work. the difference But many make sure they have it will make to events or meetings at times like both our lives.” weekends that people who work Grant can go to.
“It’s just listening “We joined this to how other people group and cope with that I think that was the and building up best thing a toolkit we could’ve done. to help you That was very helpful in the future.” because you talk Simon to people who’ve been going through the experience.” Lorna
14 Advanced MS - a carers handbook What a local carers group or MS Society group can offer you
•• benefit from years of other carers’ experience and knowledge •• learn from talks, discussions and share information in other ways •• get help filling in forms, having assessments and applying for support and grants •• pick up tips on getting a good care package •• find out what help is available locally •• meet people in the same boat so that you feel less on your own •• learn ways to relax and de-stress •• have the chance to let your feelings out to people who understand •• hear about activities that you and the person you care for can go to
Tips: •• call the MS Helpline on 0800 •• or search the Carers UK site at 800 8000 to find MS Society carersuk.org/help-and-advice/ and carers groups near you get-support/local-support •• find your nearest MS Society •• ask your GP surgery about group at mssociety.org.uk/ local support for carers near-me •• if you work, ask HR or people •• find your local carers group on you work with if there’s a the Carers Trust website. In the carers network search box for ‘Find local care and carer services’ put ‘carers’ followed by the name of your town or county
Advanced MS - a carers handbook 15 Updates on drugs and Tips: treatments for symptoms •• make sure the person you care New treatments for symptoms for has the once a year review come along, such as Botox for with an MS specialist that NICE muscle spasms and bladder guidelines say they should get problems. So it pays to keep in touch with what’s happening. •• for the latest news check out this part of our website The person you care for probably mssociety.org.uk/research no longer qualifies to take a •• read our magazine MS Matters disease modifying therapy (DMT). (and its Research Matters But research is looking into other insert) for treatment news and drugs that might help one day. tips on symptoms These include treatments that: •• we send it to our supporters •• protect nerves from more three times a year as part of damage (neuroprotective drugs) their membership. Join by •• repair damaged nerves calling 0300 500 8084 or email (neuro-regeneration drugs) [email protected] •• repair myelin (remyelination •• or join (and see back issues) here drugs) mssociety.org.uk/get-involved/ become-a-member/ms- “Advice about some real matters-magazine advances in treatment •• find back issues of Research would help. Matters here mssociety.org.uk/ My wife has never ms-research/Research-Matters- been offered any magazine drugs of any description •• or call the MS Helpline to talk to at any time. someone about symptoms or She’s had MS since she news about drug treatments was 21. She’s now 62!” Graham
16 Advanced MS - a carers handbook On pages 72-78 we look at You can find this list by putting key information about three ‘information resources list’ in the symptoms common in advanced search engine on our website. MS. These are bladder and bowel problems and pressure ulcers Order our free publications (bed sores). through the MS Helpline or online shop, or download them from our Find much more detailed website. Just put the symptom that information about these and interests you in the search box on other symptoms in our free our home page, followed by the booklets and factsheets. These word ‘booklet’. are listed in our resources list.
Advanced MS - a carers handbook 17 How severe might MS get? And how fast?
When you don’t know for Knowing what to expect can help sure what the future will lessen the shock as MS worsens. bring, it can leave you feeling The EDSS scale out of control, anxious, angry How MS gets worse over time is or even helpless. measured by a scoring system Some carers feel they might be called the Expanded Disability better prepared if they had an Status Scale (EDSS). But it’s only idea of what could be ahead. a rough guide.
The Expanded Disability Status Scale (EDSS)
Death EDSS EDSS EDSS EDSS EDSS EDSS EDSS EDSS EDSS EDSS EDSS 0.0 1.0 2.0 3.0 4.0 5.0 6.0 7.0 8.0 9.0 10.0
Normal No disability Moderate Able to walk Help needed Essentially examination but clear disability without aid to walk restricted to signs of 100 metres wheelchair impairment
Minimal disability Disability impacts Essentially Bedridden and daily activities restricted to unable to bed much communicate of the day ectively or eat/swallow
18 Advanced MS - a carers handbook For example, someone can have a Each person’s experience of MS high EDSS score but still be in a job. is unique to them but there are general trends that give some This scale focuses on how well idea of what could happen as people can use their legs (but not years go by. their arms). It also doesn’t take into account invisible symptoms On average, in the past it’s taken like fatigue, memory and thinking people 20 years to reach EDSS 6 problems or pain. (a stick or crutch needed to walk 100 metres). This has happened But you’ll read about EDSS scores on average by the age of 55. in news about drug trials and who might qualify for certain It’s taken a further 10 years after that medicines. MS specialists you for people to reach EDSS 7 (restricted deal with might talk about it, too. to a wheelchair). That’s happened on average by the age of 63. The Expanded Disability Status Scale (EDSS)
Death EDSS EDSS EDSS EDSS EDSS EDSS EDSS EDSS EDSS EDSS EDSS 0.0 1.0 2.0 3.0 4.0 5.0 6.0 7.0 8.0 9.0 10.0
Normal No disability Moderate Able to walk Help needed Essentially examination but clear disability without aid to walk restricted to signs of 100 metres wheelchair impairment
Minimal disability Disability impacts Essentially Bedridden and daily activities restricted to unable to bed much communicate of the day ectively or eat/swallow
Advanced MS - a carers handbook 19 It made no real difference whether These studies come from the time someone started out with relapsing before we had DMTs. People who’ve remitting MS or whether their MS taken these drugs often see a was progressive from the start. slowing down in how fast their MS gets worse. In the future MS isn’t A study of people with secondary likely to progress this quickly in progressive MS found on average people who were treated with DMTs. they reached EDSS 8 around 15 years after their MS became A 2015 American study* looked at progressive MS. how MS developed over the years. The graph below shows the results. EDSS 8 means restricted to bed, But remember: DMTs weren’t chair, or wheelchair. They may be around for the people in this study out of bed much of the day, with who’d had MS for decades. their arms generally working OK. * Fox et al, ‘Prevalence of multiple sclerosis symptoms across lifespan’
5 28% 26% 18% 20% 3% 4% 1%
10 19% 22% 19% 25% 6% 8% 1%
15 13% 22% 17% 28% 9% 10% 1%
20 10% 17% 17% 30% 9% 16% 1%
25 7% 16% 16% 31% 10% 19% 1%
30 6% 14% 13% 32% 12% 21% 2%
35 6% 14% 12% 31% 13% 22% 2%
40 5% 12% 11% 30% 13% 27% 2% years since being diagnosed with MS being diagnosed since years
45 4% 10% 10% 24% 17% 32% 3% 0 10 20 30 40 50 60 70 80 90 100 percentage of people affected this way
No disability Mild to moderate Walking problems Need a stick disability but no stick
Need a walker Need a wheelchair In bed all or 2 sticks or scooter the time
20 Advanced MS - a carers handbook
How might our lives change?
With advanced MS your focus The person you care for might will be more on helping the struggle at times to hold on to person you care for with basic their sense of who and what they are. This is a risk when they can’t day to day living and their stay in work or do their hobbies. bodily functions. Emotional support from outside In the past, when their MS was can help, from family, friends and less advanced, you might’ve professionals (you’ll find ideas on focused on what it stopped them pages 165-166). doing. You might’ve worried you were doing too much for them. When relapsing MS becomes Or you worried you’d make them progressive MS frustrated and less independent. As MS gets more severe, the focus will switch from slowing it down Now that MS affects them more with DMTs. severely, you both realise that there’s no option but for you to Hope tends to fade that MS can get do certain things for them (while better or even stabilise. Plans and helping them stay as independent hopes for the future might seem as possible). over. The person you care for might give up work. Their ability to move You’ll find yourself dealing more about is likely to get worse. with symptoms. You’re on a learning curve, growing in the This change to secondary experience, skills and confidence progressive MS can be frightening. you need. You’ll surprise yourself Many people say it’s like being by managing to do things you diagnosed all over again. You thought you’d never be able to do. might even feel doctors and MS nurses lose interest.
22 Advanced MS - a carers handbook The person with MS is often what kind of MS they have, should taken off the DMT they were on get a review with an MS specialist as the drug won’t have any effect at least once a year. now. Visits to the neurologist and contact with MS nurses can Don’t accept being told that from drop off or stop. It’s easy to feel now on a GP can deal with things ‘nothing more can be done’. and it’s no longer necessary to see a specialist. Specilaists include But lots can still be done. When rehabilitation services such as someone is taken off a DMT, physiotherapy, speech therapy or they’ll need more medical continence services. attention, not less. GPs usually won’t know much For help with symptoms, there about managing MS symptoms. are drugs and treatments like There may be new treatments for physiotherapy to help them symptoms that only a neurologist keep their independence. There or MS nurse will know about. are devices, too, like functional electrical stimulation (FES). MS specialists like these will also know about services that Getting emotional support is might help. If you haven’t seen important. Building this support a specialist in a long time, there won’t be easy and you’ll need to might be new services since then. drive it. To get a referral to a specialist or Most UK neurologists do, in fact, service, you’ll usually need to go stay with their MS patients for through the doctor, MS nurse or the whole of their MS. But many other healthcare staff treating the people severely affected by MS person you care for. stop seeing a neurologist regularly. Someone with MS might be put Don’t let the person you care for off going to appointments by their be lost to medical care. Guidelines fatigue, problems getting around from NICE say everyone, no matter or other symptoms. If so, home
Advanced MS - a carers handbook 23 visits or open appointments might they get on with practical stuff, be possible, especially from a such as washing, dressing and community-based service or MS other personal things. The person nurses. Ask them when you visit, with MS might prefer their carer to or phone them to discuss this. do this, rather than a stranger.
If you can’t use public transport Your relationship was once and don’t have your own, some about intimacy and friendship. areas have free non-emergency Now you’ve become their legal patient transport organised by representative, the person who your local ambulance service. looks after their finances, gives them medication and helps them The impact on our relationship with their bladder or bowel. Changes tend to happen slowly, from day to day. But look back On days when symptoms ease over the months and years, and off, the balance might shift back to you may see how things between how things used to be for a while. you changed quite quickly. You’ll become a sort of ‘care Perhaps there was a time when manager’, filing documents, keeping you resisted calling yourself a medical notes and getting treatment ‘carer’. You just wanted to be at home to avoid trips to hospital. known as their husband, wife, You have to plan each day so friend, son or daughter. things go smoothly. You need But as their needs get greater, to co-ordinate visits from care you’re more likely to see yourself assistants, nurses, social care as their carer. services and so on. All this planning and chasing people can’t You might find some parts of help but put you under pressure caring easier than others. For and take the spontaneity out of life. example, not all people find giving emotional support easy. Instead Losing the balance in your relationship can cause tensions
24 Advanced MS - a carers handbook and put pressure on your relationship. So can the challenge “You become ever of being with them for long more enmeshed in periods. It can be difficult if you the medical side clash with them over things. It’s of the person’s hard, too, when you lose the treatment. intimacy you both once had. And you become a ‘lay’ medical “MS is not going professional to beat us. yourself.” We’re going to live a life Nigel as normal as MS allows it to be.” Ted Advanced MS - a carers handbook 25 Intimacy and sex When the person you care for is your partner, MS symptoms can affect your sex life, or mean it stops. Fatigue, muscle spasms or weakness, bladder problems or pain can all get between you.
Maybe you or they lose interest in sex. Perhaps it’s still there but you worry they’re too tired or affected by their symptoms. It can feel too awkward to bring sex up. Perhaps they’re no longer able to have sex.
But sex can be one of life’s pleasures. It doesn’t have to stop. The type of sex might change. Pain, bladder issues, muscle spasms or weakness, and fatigue can have an impact on the physical and emotional aspects of sex. It may need more negotiating and planning but you might still be able to be intimate.
Perhaps the person you care for isn’t able to have sex anymore. Some couples find that, instead of penetration, they get a lot of intimacy from kissing, cuddling, stroking and touching each other.
Closeness, affection, sensuality and excitement are other ways of being intimate. They can help keep the physical side of your relationship alive. There are places that can help you talk to each other about sex. Pages 170-171 have some suggestions.
Our booklet ‘Sex, intimacy and Tips: relationships’ looks at this issue in more details. Page 178 tells •• contact the MS Helpline in you how to get this. If you put ‘sex confidence. It can be easier and relationships problems’ in to talk with someone who the search box of our home page, understands MS and how it you’ll find it there to download. can affect someone sexually
26 Advanced MS - a carers handbook •• ask for help on our online forum your own health (mental health, (see page 165) or just read too), your work and social life. You’ll what’s helped other people find tips in this booklet. Caring can •• contact the Sex and Disability affect your feelings towards the Helpline. It has qualified sex person with MS too. therapists with experience Your own quality of life might around disability (see page 171) suffer as their MS symptoms •• mention sexual problems get worse and moving around as part of a wider chat about gets harder for them. You may bowel or bladder issues with, both feel sadness, a kind of grief, for example, an MS nurse because you can’t do some things •• download booklets for men together anymore. You can learn and women about sex from to deal with these feelings. the MS Trust at mstrust.org. uk/a-z/talking-about-sexual- If the person with MS is your problems partner, you may feel you’re no •• the organisation Relate offers longer equals. It can be especially advice or counselling, face to tough to cope with if MS affects face, by phone or through its someone’s mind, such as website (see page 170) mood changes and depression. Sometimes MS causes behaviour •• sexual and relationship that’s very hard to deal with. counsellors often offer counselling using Skype (see Caring is more stressful if the person pages 170-171). Ask your GP or with MS can’t accept or adjust to an MS nurse what’s available being severely affected by it. on the NHS or privately It’s tougher, too, if their attitude is Other ways MS can affect us uncooperative. For example, they Caring can bring you closer might refuse to let other people together. It can also take its toll. It take care of them. This can stop can affect your money situation, you having a break.
Advanced MS - a carers handbook 27 Keep communicating Communication breakdowns are another challenge. How your roles are changing can trigger these. Difficulties communicating can stem from how MS affects someone’s memory and thinking, or how it can cause depression or a change in their personality.
One idea that’s helped a lot of people is to schedule a regular weekly time for this conversation. During this ‘family time’ everyone’s encouraged to ask questions. That way they understand better what’s going on.
It might feel strange at first and you might worry people’s feelings will get hurt. But over time confidence often grows until you can talk about even very sensitive things.
Why do we carry on? manager of other people. You might Whether you’re caring for a have to take on all the responsibility partner, parent or friend, you’ll for bringing up the kids. have your own reasons why you do it. As your role as a carer takes over more of your life, you might feel Being an unpaid carer doesn’t this threatens your own identity. have the status other jobs have. It This can be especially true if you won’t boost your social life, self- have to give up your job or work esteem or bank account like a fewer hours. regular job does. You might be happy to take all this Instead, you can find yourself in a on. Or you might feel it’s being brand new role that you weren’t forced on you, and this isn’t who expecting. You might find yourself you want to be. the sole breadwinner, or the
28 Advanced MS - a carers handbook You may be caring for someone to decide that being their carer is show your love and commitment, something you don’t want to do. or to honour your marriage vows. Whatever your reasons, and It could be because you feel they however you’re feeling, you would’ve done the same for you if should feel no guilt or shame. you had got ill instead. Maybe you do it out of a sense of duty. Finding someone you can talk freely with about how you’re Perhaps you feel: ‘If I don’t do feeling can be a big relief. Read this, who will?’ Or maybe you’re more about this in ‘Feelings I determined that they don’t have might struggle with’ (page 38). to go into a care home.
You might be doing it for your family’s sake, to keep a sense of “Even the most normality in their lives, especially mild-mannered, if you have children. cheery person will get ground down If you’re caring for your mother or by the relentlessness of father, you may feel it’s expected the condition eventually. of you – especially if you’re their Good news is: only child or the child who’s life just goes on. unmarried or without children. So you go through these patches … and you move Becoming a carer can be easier to to another day.” accept if you don’t feel everyone Mark expects you to do it. But if you care for a partner or parent, other people tend to expect this of you.
This pressure can be hard to live with. It can be even harder if you
Advanced MS - a carers handbook 29 The rewards Here are some of the positives that carers say help keep them going: •• pride in doing a job that needs doing •• a feeling of achievement and satisfaction in overcoming difficulties •• growing as a person and becoming stronger •• learning new skills •• feeling more confident in what you can do •• a bigger appreciation of life when you see how someone with MS lives •• inspiration you get from being involved with the MS community •• and if the person you care for can keep a positive attitude, you can both still have quality time, fun together and support each other
30 Advanced MS - a carers handbook The juggling act
At the same time as you’re run by people trained in giving caring for someone, emotional support. you’ll have lots of other Tips: responsibilities. •• find carers groups near to you Holding down a job and running a on the Carers UK and Carers home add to the strain. There’ll be Trust’s websites (see back of hospital appointments and, from this guide) time to time, a crisis or two. You •• the council (or, in Northern might also have your own health Ireland, your trust) might give issues, especially as you get older. a small monthly grant to help with tasks like cleaning Caring for someone takes up • you might decide to pay for a much of your time and energy. If • cleaner yourself you have children, looking after them and making sure they don’t •• don’t think you must manage get neglected can be a worry. without outside help •• asking for help is a sign of Juggling all this can be hard. At strength, not weakness times it can leave you exhausted, stressed and maybe even feeling “Don’t try and do a failure. everything yourself. Find new ways to It can help to talk to people in split responsibilities online forums or carers support and jobs. You want groups who’ve been through this to help, but not and found solutions. by making them If you need to let off steam or vent helpless.” your feelings, the MS Helpline is Claire
Advanced MS - a carers handbook 31 Caring when you’re in work Annualised hours, for example, Being there for someone when means you work a certain number you’re holding down a paid job is of hours over the year. But you get a tricky balancing act. But going to flexibility about when you work work gives you a break from caring. them. You work a period of regular hours and the remaining time left There’s help you can call on. In is used on an ‘as needed’ basis. England, Scotland and Wales the law (Equality Act 2010) can protect You also have a right to take off you from an employer harassing a reasonable amount of time to you or discriminating against you deal with an emergency or when because you’re a carer.* something unexpected happens. This will be without pay unless There might be a time when your employer agrees to pay you. you need to change your work patterns. By law you have the This time off could cover medical right to ask your employer for emergencies and accidents. It flexible working. But only if you’ve could cover you if your normal been in that job for six months care arrangements fall through and haven’t already formally or you need time to set up a new asked for this in the previous year. arrangement.
Flexible working could cover You may have extra rights things like flexible hours, working written into your contract, such from home, going part time or job as compassionate leave. Check sharing. Could you negotiate your this and your work’s HR policies to hours so that you fit your usual see if you can get more than the hours into a shorter week? basics guaranteed by law. Some workplaces have * In Northern Ireland carers are protected carer’s leave but this is rare at under the Human Rights Act, Section 75 of the Northern Ireland Act and under the moment until the day a disability and sex discrimination legislation. government makes this the law.
32 Advanced MS - a carers handbook Support at work “My workplace have been excellent in Could you do with more help supporting me. while you’re out at work? Most importantly A carer’s assessment could with flexibility, to identify how you might get extra be able to deal with support from the council of the whatever MS throws person you care for (or trust in at us next” Northern Ireland) - see p127. Mark An assessment for the person you Should I tell work I‘m a carer? support would look at their care That’s up to you. If you don’t want and support needs. This could lead to say anything right now, at least to them getting help to live more find out what extra support your independently (see p121 for what workplace might have for carers. kind of support). That way it’s easier You might need this one day. for you to hold down your job.
Some employers have a carer’s Being in work might mean you policy that offers (paid or unpaid) earn too much to qualify for free carers leave or time off to go to help. This is different from place appointments with someone. to place and will depend on how much you get paid. Your workplace might have a carers support group or someone Private care to contact about carers issues. If you have the money, you could Letting people at work know you arrange privately for care and have extra responsibilities at home support while you’re at work. Your will hopefully mean you get more local council (or trust in Northern support and understanding. But Ireland) has details of local providers often it’s down to your manager to of care that they’ve approved. Under give you the flexibility you need to ‘useful organisations’ (page 168) balance work and caring. you’ll find places that list registered care services. Advanced MS - a carers handbook 33 Should I cut my hours? Or you instead have a career break? leave my job? Taking early retirement or voluntary redundancy may be a If you work fewer hours or give better move money-wise than up your job, you might be able to just giving up a job. claim Carer’s Allowance and other benefits or tax credits. This will If you get Carer’s Allowance, you’ll depend on your circumstances. get National Insurance credits towards your State Pension. If you Before doing anything, find out can’t claim Carer’s Allowance, ask how it would impact on your about claiming Carer’s Credit. This money situation. For example, won’t pay you any money but can how much State Pension you get fill the National Insurance gaps in later in life depends on how much your pension record. This lets you you’ve paid in National Insurance take on looking after someone contributions. If you stop work and still protect your rights to a and don’t pay these, it’ll affect this State Pension. pension. Stopping work will affect any private pension you have, too. Our booklet ‘Benefits and MS’ has more on Carer’s Allowance and Think long and hard before giving Carer’s Credits. up work. Not only does work bring in money (and, later, a bigger Tips: pension) that makes you more independent, it brings you other •• read more about Carer’s Credit benefits. Work is good for your at gov.uk/carers-credit self-esteem. A job can be a big •• for useful advice put ‘Help with part of your identity. It gives you a your pension’ in the search break from caring and brings you engine on the home page of into contact with other people. the Carers UK website
There might be alternatives to •• Carers UK also have info on handing in your notice. Could their web page carersuk.org/ help-and-advice/work-and- career/ 34 Advanced MS - a carers handbook •• and a booklet about asking for Service (England and Wales flexible working carersuk.org/ only: details on page 172) help-and-advice/work-and- •• encourage your workplace to career/other-rights-at-work/ put a carers policy in place your-right-to-flexible-working •• ask your manager to look at •• get help with discrimination at the ‘Employers for Carers’ work from the MS legal advice network run by Carers UK service at the Disability Law
“My manager and team help keep me stress-free in work when my partner’s MS is raging. I can work from home and can request special leave too. Friends have been a great help. I just have to remember to ask and accept help.” Jo
“Stay in work if you can. This is the only financially safe option. Reducing hours or stopping work all together could involve enormous stress and hardship. Stop work and you’re at the mercy of the benefits system.” Mark
Advanced MS - a carers handbook 35
Looking after myself
You deserve to feel good in the long run, for the person you and be healthy. Try not to care for. let MS totally take over your The impact on you can build life. It’s not selfish to look slowly so that you don’t really see after your own needs too. it. Or it can hit you without any warning, for example, if the MS Be proud that, in difficult suddenly gets worse. circumstances, you’re doing all you can for the person you care Your quality of life can really suffer for. So, it’s OK to do things for if you don’t look after your own yourself as well if you can. needs and health. You risk getting ill. Then you can’t be the good You need to take care of yourself, carer you want to be. eat, sleep and exercise as well as you can. You’ll need help from You also risk losing your sense other people so you can have of who you are. You can get rests from caring. Make sure you isolated: you become a carer don’t miss your own medical and nothing else. Try to keep a appointments and check-ups. balance if that’s possible. That said, lots of carers find it hard “I don’t really look to get enough practical support. If after myself you have to pay for help, that’s a in the way I should. major problem, too. I’m aware of that, because I’m at the end Some people might even tell you of the priority list, in my to put your own needs second. head, anyway.” But that’s not helpful for you or, Andrew
Advanced MS - a carers handbook 37 Feelings I might struggle with to think about leaving the person You’re not alone if you you care for. This can be especially sometimes feel: true if MS is badly affecting their thinking and memory or causing •• guilt (for example, that you’re changes to their personality. not doing enough or not doing it right) If the person you care for has •• burn-out problems with their moods, memory or thinking (‘cognition’), •• fear and anxiety (especially or if their behaviour is difficult, over money) this can be very stressful. •• loneliness •• depression Ask to see a neuro-psychiatrist so that the person with MS gets •• a feeling of being trapped, a neuro-psychiatric assessment angry, frustrated or resentful and the treatment they need. Page 59 has more on these. It’s common to feel helpless or a sort of grief. This is often triggered by reminders of the Feeling trapped often happens days before MS came into your when: lives, or when you see people living ‘normal’ lives. •• you don’t have time for yourself Are you putting your own needs •• you don’t enjoy a good and plans on hold? Maybe even relationship with the person neglecting your own health? you care for Being with the other person all the •• you don’t have enough contact time can be really stressful. Reach with other people out to others for help with this.
You might feel less guilty Ease the tension by not bottling knowing that, when things get up your feelings. If you can’t share really tough, it’s not uncommon how you’re feeling with the person
38 Advanced MS - a carers handbook you care for or a family member, help in the past, don’t feel you then talk to an outsider. can’t ask again.
Can you speak to your GP, an Recognise signs you’re under MS nurse, a friend or another physical or mental stress. These carer? Is there someone totally include: unconnected to your home life who you could open up to, like •• being irritable a counsellor? •• getting angry •• sleeping too little or too much You can always talk to someone at the MS Helpline. They’re qualified •• muscle stiffness in giving emotional support. •• stomach problems •• feeling anxious, down or Is it time for help? overwhelmed Do you turn down support when it’s •• a racing heartbeat offered or available? Are you trying •• thinking the worst will always to be Superwoman or Superman, happen needing no outside help?
It might help to know a common “You soon realise… pattern with carers is at first they if I’m no good, reject and resist support. Then I’m no good for her.” they eventually look for it and, Iain finally, welcome it. “I use my friends for Don’t wait until you reach a crisis mental support. point before you get to that last stage. I phone them. Family and friends won’t I would’ve gone mad magically know you need support. without my friends.” Don’t be afraid to ask them for Marion help. If you turned down their
Advanced MS - a carers handbook 39 Am I depressed? It’s part of caring to sometimes feel sad, frustrated, angry, tearful, maybe even hopeless. Speak to other carers, a counsellor or helpline so that these feelings don’t overwhelm you. Symptoms of stress are similar to those of depression – sleeping poorly (or too much), feeling down, irritable, and so on.
But if you’re feeling this way for weeks or months, this is a symptom of depression. This is serious and needs to be diagnosed and treated by your GP before it gets worse.
Read more about signs of depression and take a test to see if you have it at nhs.uk/conditions/clinical-depression/
Tips: •• create some time in the day or week for things that make •• set limits of what you can do you feel good – a hobby, a and are willing to do. Know walk, reading or music when it’s time to call in help •• don’t bottle up fears and •• learn to delegate. Share the worries. It makes stress worse care. Don’t try to do everything on your own •• dealing with stress with alcohol, smoking, •• make plans for what you and prescription drugs or comfort the person you care for both eating does you no good in need (now and in the future). the long run Not having a plan often causes more stress and anxiety •• many people take comfort from their faith. Places •• listen to what your body is telling of worship can also offer you about your stress levels practical support
40 Advanced MS - a carers handbook •• many councils have Carers “I go for counselling Support Teams or Carers myself once a Support Services. Check your fortnight because I local council’s website to see find it really helpful what’s available to help you to go and •• learn relaxation techniques just let it all go.” like meditation, muscle Debbie relaxation, yoga, mindfulness, visualisation/guided imagery “It’s somebody or good old-fashioned exercise I can talk to and offload, somebody who understands my Our booklet ‘Complementary and viewpoint. alternative medicine’ covers these That’s very helpful relaxation techniques. to me.” “My son suggested a Ralf meditation group. I went along, “I think it is important feeling sceptical, to find things that but I left feeling you can immerse a bit better. yourself in – hobbies A year and a half and interests, later, I’m still going even if only for fairly regularly. brief amounts of time. Because I almost ‘Me time’ is always leave feeling important and better than must be regular. It can be flexible but when I arrived.” must still happen at Roger some point.” Nigel
Advanced MS - a carers handbook 41 Looking out for each other If you don’t do something about feelings of anger, frustration or “Don’t waste time or resentment, you might end up effort on stuff taking it out on the person you you can’t change. care for. Decide what it is you can do, do it and then knock Maybe you become rough when it off your list and stop doing something for them. Or worrying. You’ve done you lash out with your tongue. what you can. No-one Find an outlet before this can ask more. escalates. If this goes unchecked, I can’t have an impact on you might find the situation the progression of my coming to the attention of the wife’s illness. authorities, putting you under But I can do something even more stress. about her quality of life. That’s where Get help if the person you care my effort goes.” for becomes emotionally or Nigel physically abusive towards you. Or maybe you feel something’s not right about how they’re treated by “Make ‘time for me’ – you paid carers or medical staff. need to make it happen, Confide in someone on the MS even if it doesn’t win Helpline on 0808 800 8000 approval from your other or email them at helpline@ half! And make it regular, mssociety.org.uk. You could get not a one-off.” help from a counsellor - contact Paul the adult services department of your local council (or trust in Northern Ireland).
42 Advanced MS - a carers handbook Me and my GP before their MS gets so advanced Tell your GP you’re a carer. You that you need to be regularly can get free flu jabs, quicker moving them. appointments and be seen at A bad back (or a hernia) will stop more convenient times. you being able to look after them You’ll be told about events for for a long time. You could also badly carers and pointed towards hurt them if there’s an accident. other services. Letters from your You can ask a GP, MS nurse or GP to hospitals will tell them district nurse or occupational you’re the carer. therapist for tips. For health and When seeing your GP, don’t hide safety reasons their advice might how you’re really feeling. So that be restrictive (they might be you don’t forget, make a list of reluctant in case you injure yourself what you want to bring up (the following their advice). But at least important stuff first). you’ve tried to be informed. Tips: Your local social care services might know of training you can have. •• make a list or keep a diary about how you and the person If you have a carer’s assessment, you care for have been or if an earlier assessment is reviewed, be sure to mention you •• keep a medical file of all the need help with moving and lifting. doctors letters, plus details of There’s equipment they might be medical events as the MS has able to give you like hoists, slings or got worse stair lifts. There might be training. My back You can also arrange for paid carers Knowing how best to lift or move to come to your home to lift the the person you care for is very person out of bed in the morning important. You need to know this
Advanced MS - a carers handbook 43 and back into bed in the evening. More tips:
You can tell them what times to •• prepare the area so there’s come. But there might be some enough space around you restrictions over the exact time of •• wear shoes with a good grip day they do this. and clothes that aren’t too tight •• move according to your
Tips: abilities on the day •• before helping someone to move, •• make sure you both know the ask them if they feel up to it planned movement so you work as a team. Count in the •• think about where you’re start of the movement: ‘ready, going to place your hands steady, go’ •• try not to pull the arms as •• keep your back straight, bend the shoulders can be very at the knees and avoid twisting sensitive to injury •• use your body weight to •• if it’s a bad day or time, think provide power to avoid strain about doing something on your back different or avoid moving them altogether •• keep your head up when carrying out a manoeuvre - •• use things like a handling belt this promotes good posture or hoist when you need to •• try not to give more help than •• use your biceps, not your back the person needs, and move at “I’ve had one problem a speed that lets them join in actually from caring ... •• position your hands I had a hernia operation carefully to avoid damage or in February discomfort to the skin and I would say that was Read about equipment to help from lifting her.” move someone on page 100. Ben
44 Advanced MS - a carers handbook The organisation Backcare has a Disclaimer: this information on lifting booklet for carers. Your council may is not meant to take the place of give you a copy or you can buy it from: professional training or guidance. All backcare.org.uk/new-backcare- moving and handling carries risk, to carers-guide/ you and the person you care for. Download our factsheet ‘Posture “I did the pilot course and movement 1’ with its advice on handling, moving for carers on lifting. Put ‘posture and lifting and I would and movement’ in the search box recommend that for on our web site. everyone. Because if people have got that, The NHS also has information: they can deal with things nhs.uk/Conditions/social-care- a lot better.” and-support-guide/Pages/ Mike mobility-problems-carers.aspx
Advanced MS - a carers handbook 45
I need a break
Having regular breaks When you get respite, a paid care can help you hold things worker provides the help to the together, both mentally person with MS. They’re arranged by the council (or Health and Social and physically. Care Trust in Northern Ireland) or A break can be with or without another care organisation. the person you care for. It doesn’t Respite can happen at home or in have to be a holiday. It could a special centre. In some centres, just be time out from your usual carers can stay too. It can last a routine or the chance to learn week or two, or just be a day or half something new. a day each week. If you see the phrase ‘short break’, Some carers find it hard to get this usually means a holiday respite or residential care that for you or the person with MS. will take the person they care for. It might be for the two of you Maybe they need a lot of medical together or separate holidays. care or have a disability the ‘Respite care’, on the other hand, respite centre won’t handle. Or the gives you and the person with MS centre expects the carer to still go a break from the demands of your in and do certain things for them. usual routine. Sometimes it’s hard to get the Respite lets you recharge your replacement carers trained up batteries, relax and think about enough to give care that’s as good other things than caring. The as what you give. person with MS can go for a while Your local MS group or carers to a care home, nursing home or group will know of respite centres, a specialist centre. including ones that can take
Advanced MS - a carers handbook 47 someone with a disability or who But try to let go of guilt you might needs specific types of care. feel - or prepare more beforehand. If you don’t have some kind “Having a break from the of break, you could end up so world of MS has been exhausted or ill that you can no really important for me. longer give the care you want to. To be able to do things where I can switch off A one-off break won’t be enough. and forget about MS and Breaks need to be regular. Don’t the effect it has.” wait until you’re ‘burnt out’ or at Sunita a crisis point before you agree to a break. By that stage a rest on Feeling guilty its own may not be enough to let you recover. It’s not unusual to feel bad about taking a break. Perhaps you feel Be realistic about what one you can’t enjoy one because you person can be expected to do. worry about the standard of care You’re not being ‘selfish’ if you the person would get while you’re have a break. You deserve to away. Maybe you tried respite feel good and be healthy. Not care before and found it wasn’t as everything you do has to be for good as the care you give. the person you care for. It’s OK to sometimes do things for you. “I felt bad… If he’d been at home, he wouldn’t ‘Me time’ have had that [bed sore If you can’t get away, try to create and urine infection] moments at home where you can and no form of respite grab ‘me time’ away from caring will make me feel right and you can do things to relax you. again. So I’d rather not have it, even though The key is to make time. It might I need it.” just mean staying up a bit later Karen after the person you care for is
48 Advanced MS - a carers handbook asleep so that you can watch a Do you or the person you care DVD, for example. for qualify for social care services from your local council (or trust in These mental breaks can involve Northern Ireland)? reading, listening to music, yoga, meditation, walking the dog, If you do, then you may be able to gardening and other hobbies. use your care package to help pay Did you know that some GPs can for short breaks and respite care. prescribe you exercise, yoga or dance classes? Tell the council (or trust) when you have your carer’s assessment Our booklet ‘Complementary (see page 127) that you need and alternative medicine’ has respite care on a regular basis - or information about ways of whenever you need it. de-stressing. These include mindfulness, yoga, massage and If you need respite but you’ve other relaxation techniques. already had your assessment, get back in touch with them and say “The key is to enjoy you need respite care. those five minutes here and there. Rest, catch If, after you’ve had a carer’s your breath and refresh. assessment, your support plan Again, a mental exercise says you need a break, you might you can train yourself get money to spend on a break to get good at.” for yourself. Mark Does the person you care for get a personal budget as part of their Paying for a break social care? If they do, they could use As the carer, you might qualify this to pay for a break for themselves for financial support towards the - if that’s in their care plan. cost of a short break, holiday or If they pay to have a personal respite care. assistant (PA), they could use
Advanced MS - a carers handbook 49 their funding package to pay for Our booklet ‘Short Breaks – a them to go on a break with their guide to holidays, short breaks PA. That would give you a rest. and respite’ has details of how we might help you pay for a holiday. Charities might be able to help with the cost. For example, the It also lists accessible travel MS Society may be able to help agencies and respite companies, with paying for: together with other charities that might help with holiday costs. •• a specialist break that includes respite care at a respite centre Finally, there are ‘sitting services’. or care/nursing home Someone comes to spend time with a person who normally has a •• or costs for paid care workers, specialised accommodation family carer. and equipment that add to the They can’t give medical or cost of a holiday personal care but can let a carer A local MS Society group or carers have a few hours’ break. group may help with funding These services are run by local respite care. They’ll know about councils (trusts in Northern other charities that help with the Ireland), health authorities or cost of breaks, too. Find your private companies. nearest carers group here carers. org/search/network-partners Many carers struggle to get respite. It can be hard to get but You can apply for a grant through it’s essential you find a way, to your local MS Society group. avoid overload and burn out. Call 020 8438 0700 or email [email protected] or visit More tips: mssociety.org.uk/grants •• find ideas for breaks and how to pay for them on our short
50 Advanced MS - a carers handbook breaks page at mssociety.org. uk/care-and-support/ “The local MS therapy everyday-living/breaks-and- centre lets my mum holidays go and exercise •• ‘Tourism for all’ is a charity and socialise with dedicated to making tourism people with MS. welcoming to all its members: Centres like this really tourismforall.org.uk improve mental and physical health, •• The Respite Association offers help paying for care and give me so you can have a break a half day off, too.” respiteassociation.org Caroline •• Revitalise is a charity providing “I’ve not had much short breaks at three centres support as a carer. But in England (and sometimes I now have six hours a funding) for carers and the week sitting service. people they care for This has been revitalise.org.uk (search for a godsend.” ‘support fund’ for help with Terry paying) •• wheelchairworld.org has travel “My most important resources and reviews of thing is to get a break. destinations in the UK and all Because without that, over the world I would not be able •• to help you enjoy a day out to cope. If I don’t get with the person you support, respite, I don’t think I’d the Carers Trust have some survive long. You can practical tips on things like feel the weight parking, transport, toilets, free coming off you.” entry for carers, and so on at Mike carers.org/article/days-out
Advanced MS - a carers handbook 51
Meet the medical team
Someone with advanced It’s not a ‘must’ that someone MS might see a wide range severely affected by MS sees a of medical staff. So who’s neurologist but most do. If they don’t, they should at least have an who, and what do they do? MS specialist nurse or someone Official guidelines from NICE say with experience of MS looking the person you care for should after their care. get medical care from a ‘multi- The MS multi-disciplinary team disciplinary team’ (MDT). That’s is based at a hospital or in your a collection of staff who are each community. Pages 54 to 61 show experts in different types of who’s usually in it and other medicine or care. medical staff involved in the care Guidelines say this team should of people severely affected by involve an MS specialist. And their MS. This helps you have there should be one person in a clearer picture of what sort of the team who coordinates all the services might be available. care. You might find that, as the You shouldn’t buy into the idea carer, it’s more likely you who that ‘nothing more can be done’ takes on the coordination role. when someone’s MS becomes Guidelines also say the person progressive or advanced, or when with MS should get support to they no longer take a DMT. stay active if they have problems There’s no reason to lose with fatigue or getting around. touch with MS services. Having They say the person should get a advanced MS means more needs review of their MS at least once a to be done and the care team year by an MS specialist. should be bigger.
Advanced MS - a carers handbook 53 You shouldn’t try to manage MS note in pencil of names and symptoms on your own or rely contact details on pages 66-71, you only on a GP. can update this when staff change.
It can be easy to give up on services because the person you 1 neurologist care for is no longer very mobile. A hospital-based doctor who If so, ask if it’s possible to be specialises in nerve-related visited at home, or be seen in a conditions. Some are specialists community outreach clinic. in MS, others treat a range of things, of which MS is one. They An MS specialist might offer prescribe drugs, order tests and ‘open appointments’. This is when refer to other specialist services. you aren’t given a date but have a specific period (say, six months) to You don’t have to wait for your book an appointment in, without next scheduled appointment needing to be referred by a GP. if there’s a sudden change in someone’s MS. To make an Unfortunately, there’s a shortage appointment ask your GP, MS of neurologists, MS nurses and nurse (if you have one) or contact other services across the UK. So the neurologist’s secretary. what’s available might be patchy MS nurses depending on where you live. And 2 if they do exist locally, they may They give advice about be dealing with a lot of people. symptoms and treatment and can be the link between hospital Who’s who? and specialist services, including On the next few pages you’ll find social care. They do home visits a rundown of medical staff people and answer questions by email with MS might see and what they or phone. do. Often it’ll be left to you to co- GP (‘general practitioner’) ordinate them all. They’re often 3 not as good at working together Your family doctor looks after as you might expect. If you make a your general health. They may
54 Advanced MS - a carers handbook have just one or two patients with They also help with fatigue, MS, so don’t usually know much balance and tremor and do about it. They can’t prescribe assessments if you apply to DMTs but can give some meds have your home adapted. for MS symptoms (preferably Ask a GP, nurse or other heath after talking to an MS nurse or professional for a referral. neurologist). They’ll refer you on physiotherapist to specialist MS services. 6 They use exercises and 4 district/community nurse movements of the body so that They tend to work away from someone can move around hospitals, often linked to GPs. better, with better balance and They visit clinics, care homes or less fatigue, pain and muscle where patients live. spasms. Those trained in They can provide quite conditions affecting the nerves complicated care to do with (like MS) have ‘neuro’ before things like catheters, wounds, ‘physiotherapist’. Home visits and bowel and bladder issues. may be possible. Referral They give advice on symptoms, comes via a GP or MS nurse. equipment and taking drugs 7 pharmacist (but they don’t usually He or she gives drugs prescribe them). (sometimes equipment) occupational therapist (OT) prescribed by your doctor or 5 specialist and offers expert They offer practical suggestions advice on them. They can on how a person does everyday discuss issues you or the things, from eating, dressing or person you care for are having washing to work-related tasks with meds. NHS community and hobbies. They advise on pharmacists are based in equipment and alterations to hospitals, health centres or the home or workplace that pharmacies but may visit make life easier. patients at home or in
Advanced MS - a carers handbook 55 Meet the medical team
12. neuro 5. occupational 3. GP 1. neurologist rehabilitation team therapist
14. dietitian 8. spasticity 7. pharmacist specialist carer and person with MS
18. mental 17. neuro- 16. neuro- health nurse psychiatrist psychologist 13. wheelchair services Meet the medical team
1. neurologist 2. MS nurses 6. physiotherapist 4. district/community nurse
9. continence 10. urologist 11. speech & advisor language carer and person therapist with MS
13. wheelchair services 15. orthoptist 19. orthotics 20. palliatative care residential homes. Some work They work with continence in high street chemists and advisors and can give Botox supermarkets. for the bladder and other treatments. They give advice 8 spasticity specialist on different types of catheters, This is often a consultant and how to manage them. in rehabilitation medicine. Referral is through a GP. They work in a clinic inside speech and language a hospital and treat severe 11 therapist (SLT) muscle stiffness. Spasticity clinics prescribe treatments, Someone who treats including drugs (such as Botox), communication and and may include assessments swallowing difficulties and by an OT and sessions with a assesses people’s swallowing physiotherapist. Self-referral problems. They can help may be possible or come via an when someone struggles to MS nurse, neurologist or GP. find the right word or follow a conversation. 9 continence advisor An SLT might see a patient in This is a bladder and bowel a hospital, community centre specialist nurse based in a or clinic or at home. Referral hospital or clinic, with home is usually by a GP, MS nurse visits possible. They can or neurologist but it’s possible prescribe exercises, medicines, to self-refer. equipment and incontinence neuro-rehabilitation team products. You can contact these 12 services directly or be referred They help people get back their by an MS nurse or GP. independence after a nerve- related injury such as a stroke 10 urologist or the effects of MS. They might A hospital-based specialist do visits to homes or day whose work includes MS- centres and are usually based related bladder problems. in a hospital or clinic.
58 Advanced MS - a carers handbook They offer physiotherapy, movement issues, such occupational therapy or as MS-related double speech and language therapy, vision. They work in the eye and might include a dietitian, department of a hospital psychologist or social worker, or community clinic, or in a too. A GP or MS specialist will hospital or community clinic, make referrals to them. or in a MDT. 13 wheelchair services 16 neuro-(clinical) psychologist Often part of a hospital, they Someone who treats problems give manual and electric with behaviour, emotions, wheelchairs free of charge on a memory and thinking long-term loan (and do repairs). (‘cognition’). This can include Each centre has its own rules on depression or anxiety. They who qualifies for wheelchairs. don’t prescribe drugs but teach Assessments by an OT or counselling techniques (such as physiotherapist can take place at CBT), including ways of coping a clinic, your home, day centre mentally as MS gets worse. or care home. Referral is via a If trained in conditions affecting GP, neurologist, district or MS the nerves (like MS), they’ll have nurse, physiotherapist or OT. ‘neuro’ before ‘psychologist’. dietitian Referral is through your GP or 14 MS specialist. Someone who helps with eating healthily, losing or 17 neuro-psychiatrist gaining weight and preparing A medical doctor who treats food when a person has more serious mental health problems swallowing. A GP problems and uses a more makes the referral. medical approach than a orthoptist psychologist. This usually 15 involves prescribing drugs, They help test for and treat but sometimes counselling sight problems and eye techniques. If trained in
Advanced MS - a carers handbook 59 conditions affecting the nerves 20 palliative care team (like MS), they’ll have ‘neuro’ They help with hard to control before ‘psychiatrist’. Referral is symptoms, especially pain. through your GP or MS specialist. They can plan end of life care, but palliative care with MS is mental health nurse 18 often about helping people and They support people with carers have a better quality of mental health problems. These life, not getting ready for dying. include anxiety, depression and A typical team has a palliative stress-related illness. medicine consultant, palliative They work with psychiatrists care nurse specialist, OT, social and psychologists. They work in worker and physiotherapist. a hospital, community clinic, in This care happens in a care patients’ homes, in residential home, hospice, hospital or homes or as part of a GP surgery. at home. The team works orthotics alongside the standard care the 19 person with MS is getting. working in a hospital, they help with some MS-related others: walking problems. They provide social worker equipment to support part of someone’s body, such as They help people live splints for foot-drop and devices independently and find that support the foot or go solutions to problems. They inside shoes. They might offer organise support and make Functional Electronic Stimulation referrals to other services. (FES) for foot-drop. They work in the community, often employed by the local Referral is via a physio-therapist council. Some work in a or MS specialist directly or be hospital, healthcare centre, referred by an MS nurse or GP. care home, and many do home visits.
60 Advanced MS - a carers handbook counsellor Being listened to Someone who helps people talk Carers often say they feel doctors about their feelings, deal with and other medical staff don’t emotional problems, including listen to them. As their carer, you family relationships, depression know more about the person with and anxiety, and gets them MS than the professionals do. through a difficult time. They can Health care staff should recognise be based in a hospital, community your knowledge and experience. If centre or GP surgery. they don’t, politely remind them! community matron You might get the feeling medical This is a senior nurse with a lot staff are interested only in the of experience who works with person with MS. It’s not unusual people at home with long- to feel that you, and what you do, term and complicated health get overlooked, especially when care needs. They carry out decisions are being made. regular nursing tasks but also manage someone’s care and “It’s important not refer them to other services, to be overawed by including home care and respite. health care providers… even up to consultant level. Contact details Don’t lose your rag, On pages 66 to 71 you can be polite but firm. make a note of the details of the Say if they use terms medical staff who look after the and you don’t know person you care for. what they mean, Either photocopy and use as a or if you disagree with blank form you can fill in - or fill their proposed actions.” in with pencil so that you can Paul alter it if details change later.
Advanced MS - a carers handbook 61 At appointments Access to medical records Meeting doctors and other medical You can see the medical records staff can be intimidating, especially of the person you care for if they if time with them is short. Here let their surgery know this is OK by are some tips on getting the most them (or if you have Lasting Power from appointments: of Attorney – see page 155).
•• make a short list of questions This is called their Online Patient (put the most important first) Record or Personal Health Record (PHR). All GP surgeries now •• take something to make notes with have these. It lets you book GP appointments and see test results •• take copies or printouts of and prescriptions. things you’ve seen and want to bring up Once you have access to these •• say if you don’t understand records you can get repeat something they say prescriptions faster and cut out •• be clear what you will and unnecessary trips to the surgery. won’t do in terms of medical If you set up a repeat prescription procedures and caring tasks service with a local pharmacy, you •• in the weeks or months before won’t need to see the GP. the visit keep a diary recording the symptoms of the person Speak to your surgery about how you care for to get this access. Read more about it at nhs.uk by putting in the If doctors or other medical experts search box ‘access someone else’s don’t have time, or aren’t good medical records’ at communicating, take your questions or worries to their support staff (for example, the MS nurse). Call the MS Helpline if there are still things you don’t understand.
62 Advanced MS - a carers handbook ‘Continuing healthcare’ assessment will be done in hospital In England, Wales or Northern before they leave. Page 82 has Ireland, ‘continuing healthcare’ more about leaving hospital. (CHC) is a package of free NHS care Next an assessor (usually a nurse) it’s possible to get at home (or in a organises a meeting with other care home or hospice). professionals. These will either know To qualify for CHC, the person you the person with MS, or they’ll be care for must have very major MS experts. This can include the and complicated health needs person’s GP or MS nurse. that aren’t going to go away. It can The patient (or their carer or also give support with things like advocate) should be at this bathing, dressing and laundry. It meeting, along with any medical can also pay towards a care home. professional the patient feels This isn’t part of social care, so it’s should be there. They go over the not dealt with by the council (or 12 needs on the checklist (plus Health and Social Care Trust in another two). The patient has their Northern Ireland). It’s paid for by say, too. If it’s decided that the the Health Service (NHS). person qualifies for CHC, a care plan is drawn up. There won’t be charges for any health care you get from the NHS. This plan is looked at again after And it doesn’t matter how much three months, then again once money or ‘assets’ you or the each year. If someone’s MS gets person you care for have. any better, they may find after their review their funding for this care To get this the person you care gets reduced. for must first have their needs assessed. They’ll score points on a Continuing healthcare isn’t easy checklist that looks at 12 needs. to get. A lot of people who try get turned down. If the decision is a If the person is being sent home ‘no’, the patient will be told how to after a stay in hospital, then the appeal. For those who do get it, it
Advanced MS - a carers handbook 63 makes more resources available than from Beacon and Care to be you can get from your local council Different and the websites listed (or trust in Northern Ireland). on pages 169-170
Do you feel social care services no Scotland longer cover what the person you In Scotland continuing health care for needs? Then ask their social care was replaced in 2015 by worker, GP or MS nurse about being Hospital Based Complex Clinical assessed for continuing healthcare. Care. Assessment for this is based around one question: Tips: can a person’s care needs be •• download the assessment properly met somewhere that’s forms and fill them in before the not a hospital? assessment, using the scoring If yes, they’ll be discharged you’d give. Search gov.uk for ‘NHS from NHS care to a suitable continuing healthcare checklist’ community setting – home •• if you can, share this with your social (with support), a care home or worker or person who referred supported accommodation. you. Refer to this in the meeting They’ll be assessed to see what where it’s worked out how many services they need . A financial points the person you care for will assessment will be carried out score. This way, you’ll feel under less to check whether they need to pressure during the assessment pay any of the costs.
•• in England the Beacon Any health care they need organisation can give you 90 will still be free on the NHS. minutes free advice on continuing Find more information healthcare. They have free by searching for ‘complex booklets. For a fee they can take clinical care’ at gov.scot or up a case or help with an appeal careinfoscotland.scot
•• find out more about CHC, If you were getting CHC before including how it’s paid for and June 2015, you’ll carry on getting how to appeal against a decision, it (if you still qualify for it). 64 Advanced MS - a carers handbook
Contact details for medical staff
GP (family doctor) Name: Based at: Phone number: Email:
Neurologist Name: Based at: Phone number: Email:
MS nurse Name: Based at: Phone number: Email:
District (or community) nurse Name: Based at: Phone number: Email:
Social worker Name: Based at: Phone number: Email:
66 Advanced MS - a carers handbook Neuro-rehabilitation team Names: Based at: Phone number: Email:
Occupational therapist (OT) Name: Based at: Phone number: Email:
Community matron Name: Based at: Phone number: Email:
Dietician Name: Based at: Phone number: Email:
Physiotherapist Name: Based at: Phone number: Email:
Advanced MS - a carers handbook 67 Speech and language therapist (SLT) Name: Based at: Phone number: Email:
Counsellor Name: Based at: Phone number: Email:
Continence adviser Name: Based at: Phone number: Email:
Urologist (bladder) Name: Based at: Phone number: Email:
Spasticity specialist Name: Based at: Phone number: Email:
68 Advanced MS - a carers handbook Wheelchair services Name: Based at: Phone number: Email:
Orthoptist (eye specialist) Name: Based at: Phone number: Email:
Pharmacist Name: Based at: Phone number: Email:
Orthotics service Name: Based at: Phone number: Email:
Psychologist Name: Based at: Phone number: Email:
Advanced MS - a carers handbook 69 Psychiatrist Name: Based at: Phone number: Email:
Mental health nurse Name: Based at: Phone number: Email:
Palliative care worker/team Names: Based at: Phone number: Email:
Other Name: Based at: Phone number: Email:
Other Name: Based at: Phone number: Email:
70 Advanced MS - a carers handbook Other Name: Based at: Phone number: Email:
Notes:
Advanced MS - a carers handbook 71 Managing three common symptoms
The person you care for Signs to look out for are: has their own symptoms •• the person has a burning individual to them. But three feeling when they pass urine are very common and often •• they feel the need to go more don’t go away: bladder often than usual and bowel problems, and •• they can’t go when they feel pressure ulcers. they need to • just a dribble comes out Bladder • •• there’s a bad, ’fishy’ smell MS can stop someone being able to control when they pass urine •• their urine is dark, cloudy or (‘wee’). This is ‘incontinence’. has blood in it •• the person has a fever, chills or MS can also stop their bladder feels pain or tired emptying properly. What you can do A urologist will do tests to check Act fast. If you empty a catheter how their bladder’s working. bag and there’s a fishy smell, take Urine that gets left in someone’s a sample to your GP surgery within bladder can lead to a bladder or an hour. Or call out the district urinary tract infection (UTI). nurse to do a test on it.
UTIs are very common in advanced That way, within a couple of hours MS. They can badly affect a person the person you care for could be in a number of ways. on the antibiotics that they need.
72 Advanced MS - a carers handbook
The sooner a UTI gets treated, the •• keep your stocks of bags up so less chance that they’ll need to go that you don’t run out into hospital. •• drinking more helps stop a catheter getting blocked Left untreated, the infection can be very dangerous. It can spread to the kidneys and infect the blood, causing sepsis - which can kill.
Check out our webpage on “Getting a catheter managing bladder issues at fitted and using it mssociety.org.uk/about-ms/ is just the start. signs-and-symptoms/bladder/ Blockages and managing-bladder-problems the whole management of catheters You’ll find there our booklet is a job in itself. ‘Managing bladder problems’. It also covers different types of District nurses catheters and Botox as a treatment are crucial. for an overactive bladder. You’ll get to know urine well: its colour, Tips: odour and opacity •• lower someone’s risk of an as you develop a nose, infection by getting them to drink literally, for more (1.5 to 2 litres each day) spotting UTIs.” Mark •• avoid caffeine as it can irritate the bladder •• be sure to keep the catheter clean •• replace bags regularly (the leg bag each week, the night bag each day)
74 Advanced MS - a carers handbook Bowel What you can do Advanced MS often causes Try to establish a regular and constipation. This can mean: comfortable routine for toilet breaks, such as after a hot meal or •• not being able to have a bowel half an hour after breakfast. movement (to ‘poo’) When monitoring toilet trips, •• having to strain a lot they’ll find it harder to ‘go’ if you •• bloating don’t give them privacy. Make the •• if someone can go, their stools toilet easy to get to - and to get (‘poo’) are hard on and off.
They can also lose control over Think about fitting a raised seat. Is their bowels (incontinence). the angle they’re sitting at right? It can help having knees higher Incontinence can be very than hips, with feet apart, with upsetting for the person with something to rest feet on. MS and a challenge for you, the person who cleans up afterwards. Keep a diary of their bowel movements, what they look like, if With constipation, certain actions there’s blood in them, and so on. can help with a bowel movement. These include stomach Download from the internet the (abdominal) massage or inserting ‘Bristol stools chart’. This helps a finger inside their bottom. you describe what you see in a way medical staff will understand. Inserting a finger is usually It’ll be useful when talking to something only a qualified nurse a GP, MS nurse or if there’s an (such as the district nurse) is assessment by a continence allowed to do. But carers might be service. A GP can refer someone taught this by someone qualified. to their local service or they can often refer themselves.
Advanced MS - a carers handbook 75 Food and drink Fibre helps keep people regular, If MS is causing bladder problems, so their diet should have enough it’s tempting to cut back on drinks. wholegrains (in some breads and But this can cause constipation or cereals), fruit (dried fruit is good) make stools too hard. A few glasses and vegetables, with maybe a of water a day can prevent this. fibre supplement, too. Enemas, suppositories, stool softeners, Some medication can cause laxatives or bulking agents (like constipation. Examples are some bran) can be used. anti-depressants or pain killers, and meds for the bladder, heartburn, Being as active as possible stops seizures or muscle spasms. the bowel getting sluggish. We have videos with exercises Antibiotics can also cause for people in wheelchairs constipation (but they might here mssociety.org.uk/ cause diarrhoea instead). msactivetogether Tips: Pressure ulcers •• caffeine, spicy food, chocolate, Pressure ulcers are also called alcohol, milk products and high pressure sores or bed sores. They fibre can make stools too loose happen after someone stays in •• check out your local one position too long. continence service. You can get The person you care for is at risk your GP or MS nurse to make a if they spend a lot of time in a referral or the person you care wheelchair or in bed. for can refer themselves •• a physiotherapist or Pressure on one part of the body, continence clinic can teach especially a bony part, stops strengthening exercises to enough blood getting to the skin increase bowel control tissue, so it dies. Friction from •• organisations that can help moving or being moved can with bladder and bowel cause pressure sores, too. problems are listed at the back The time to start thinking about of this booklet these sores is before they start. •• call 111 if you need medical advice This is once the person with MS from the NHS out of hours (see starts to find it hard to move page 167 for more details) about. If they lose weight (maybe •• visit our webpage at because of problems eating), that mssociety.org.uk/about-ms/ can put them more at risk. signs-and-symptoms/bowel/ causes-of-bowel-problems If they wet themselves, don’t •• you’ll find there our booklet let their skin stay damp. If this ‘Managing bowel problems’ happens regularly, wearing •• call or email the MS Helpline absorbent pads will keep them dry. for our ‘I need some help’ card. It’s important they (or you) change for people to carry. The person their position regularly. If they you care for carries it, and it can move themselves (in their explains they have a medical wheelchair, for example), get them to condition and urgently need to
use the toilet. Advanced MS - a carers handbook 77 change position every 15-20 minutes. from our website. Search for ‘pressure ulcers factsheet’. Or ask If they’re confined to bed, change the MS Helpline to send you a copy. their position every two hours or use an air-filled mattress. Put Other symptoms pillows, cushions or leg lifters We have booklets and factsheets under their legs to lessen the about lots of symptoms of MS. weight on them and to keep their heels off the bed. These are some things they cover:
Tips: •• pain •• check their skin each day when •• speech and swallowing washing them •• fatigue •• moisturiser stops skin drying out •• muscle spasms • tremor •• make sure they bathe when • they need to •• memory and thinking (‘cognition’) •• when moving them, lift, don’t drag •• balance •• cushion them with foam or air • eye problems cushions • •• tilt-in-space wheelchairs can Check the list of our booklets and help prevent sores by taking factsheets. It tells you how to pressure off the buttocks order, or call the MS helpline for copies. •• don’t blame yourself if they get a sore. They happen even with Find the list by putting the best care ‘information resources list’ in the •• read more at nhs.uk/ search engine on our website. conditions/pressure-sores/ We have a factsheet about pressure ulcers you can download
78 Advanced MS - a carers handbook
Hospitals
Stays in hospital are likely Many GP surgeries now have to be a fact of life with a Care Coordinator to make advanced MS. But some can hospital admissions less likely. be avoided. For example, they could send the district nurse each week to check If they can’t be avoided, how do up on the person you care for. you prepare for when the person MS nurses are trained to spot you care for goes into hospital (is people at risk of getting infections ‘admitted’)? And when they come or pressure ulcers and get the home (is ‘discharged’)? right help to them. Sudden, unexpected trips to If your MS nurse can’t pay a home hospital can be upsetting. They visit for a week or two, phone can also lead to infections which them for advice. Get medical might cause lasting disability. advice for any unexplained These infections might be symptoms you notice. avoided if action is taken sooner. Take advantage of any health A stay in hospital is less likely screening programmes offered if you do things that prevent to the person with MS, such as pressure ulcers, bladder or chest free annual flu jabs (you both infections and bowel problems qualify for this). Flu can lead to (like constipation). pneumonia and bronchitis - and a If you spot a problem, fast hospital stay. treatment can keep someone Encourage the person you care out of hospital. Tips on avoiding for to keep as fit and active as their bowel issues and bladder and MS allows. That could make them urinary tract infections (UTIs) are less prone to infections. We have on pages 72 to 78. exercise videos for people in
80 Advanced MS - a carers handbook wheelchairs at mssociety.org.uk/ to each new member of the msactivetogether hospital staff you deal with. And you might forget some things. Avoid smoking, including passive smoking (breathing in other Here’s a solution that other carers people’s smoke). Avoiding this find saves time and effort. makes both of you less likely to Have information about the get chest infections. person’s care in writing. It’s then ready to give people at the Keeping at a healthy weight, hospital (or at home when new taking meds as prescribed, and people come to care for them). not drinking to excess will help the person with MS avoid complications Photocopy the form on pages 86 that need hospital care. to 89. Fill it in using pencil so that you can change details. Or create Benefits and hospital stays your own version on a computer. If the person you care for goes into hospital (or a care home), “I spend the first three it can affect benefits like Carer’s hours in hospital Allowance or Cold Weather answering the same payments. questions over and over. I now have a sheet with Your Carer’s Allowance will stop all my wife’s relevant after four weeks. You must tell information on it. the benefits authorities when Staff say how useful they go into hospital (or a care they find this.” home), and when they come out. Nigel Read more on page 142.
Getting ready for hospital Use pages 90 to 92 to let paid No-one knows the person you carers know what they should care for as well as you. It’s a pain know when they come to care for to keep repeating what you know the person with MS in their home.
Advanced MS - a carers handbook 81 Tips: Coming home It can be a worrying time when the •• back up the form on pages 86- 89 with a well-ordered medical person you care for is sent home file. Put in it all the information from hospital. How will you cope? on their medical history and Have you got all you need? What previous stays in hospital help can you expect?
•• at the front put contact details First of all, make sure the hospital for the health and care teams knows you’re the carer. Some hospitals are better than others at •• at the hospital let them know recognising this. All the same, you you’re the carer (wear a carer’s should be consulted. You know lanyard or whatever the the patient better than most and hospital uses) what care they need. •• make sure your knowledge and skills are used as part of If they have complicated health the hospital care team care needs, you should see a ‘discharge coordinator’. Their job •• ask to help with things like is to make sure the patient can feeding if you’d like to carry on getting better after they •• if you’re the main carer, you leave hospital. shouldn’t be restricted to normal visiting hours The discharge coordinator should make sure the person leaving •• build a good relationship with hospital has a ‘discharge plan’ for the Ward Nurse in charge and their health and social care. be proactive This plan should cover the services, •• make sure the person you equipment, drugs and information care for isn’t left in bed too you need (a ‘care package’). It’ll much. If there for a long cover things like medication, time, make sure that they get dealing with symptoms, dressing physiotherapy so that they wounds and coordinating the don’t lose muscle strength different care services.
82 Advanced MS - a carers handbook You should be involved in drawing or to give them medication when up this plan and be given a copy. they’re back at home. Say if you’re worried about parts of the plan, It should have in it the name of or you think you might have the person responsible for making problems with it. This includes sure this plan is followed. how the cost of any social care services in the plan will be paid for. It should cover how to get the person home. Some areas have Speak to the consultant or the free non-emergency patient hospital general manager if you transport organised by the local feel no-one’s listening to your ambulance service. worries. You don’t have to accept a discharge plan if you feel you The plan should mention what can’t manage. training you need to care for them The discharge coordinator can Their job is to help people learn to make sure the hospital contacts become safer, more independent your GP. If one’s needed, the and more confident when they hospital can contact the district leave hospital. nurse, and other specialists such as a physiotherapist or This can include things like occupational therapist. cooking or bathing and getting basic equipment like commodes If the person you care for will or alarms. This help will last for up need significant and complicated to six weeks. care at home, read the section on Continuing Healthcare on page 63. Contact your social care services department for more details or Discharging them will be talk to the staff at the hospital. slow. It can take hours for the doctor to sign them off and for To get this help the council (or nurses to make the necessary trust) will do an assessment of the arrangements, including perhaps needs of the person you care for. If an ambulance home. they qualify, this service is free.
Hospitals aren’t fully staffed at Tips: weekends. So if you’re looking to •• read more about leaving get a discharge on a Friday, make hospital by searching ‘discharge sure delays don’t mean you end from hospital’ at nhs.uk up staying until Monday. •• check reablement is working. Reablement If not, make sure social care A ‘reablement team’ might be services are there to pick up as available from the local council soon as reablement ends (or Health and Social Care Trust in Northern Ireland). The local health service sometimes provides it.
84 Advanced MS - a carers handbook
Information for hospital staff
Patient’s name: Date of birth: Special considerations when communicating with this patient:
Is their memory or thinking affected? No Yes Details:
Pressure sores: No Yes Details:
Routine for physio or movement:
Allergies:
First diagnosed with MS in:
86 Advanced MS - a carers handbook Other health problems?
MS specialists treating this patient: Name: Based at: Phone number: Email:
Name: Based at: Phone number: Email:
Daily drug prescriptions and doses:
Normal body temperature _____ blood pressure _____ pulse _____
Feeding instructions, such as PEG feeding tubes: No Yes Details of system:
Advanced MS - a carers handbook 87 Special feeding instructions or prescriptions:
Feeding specialist: Name: Based at: Phone number: Email:
Daily fluid requirements:
Catheter advice:
Other medical needs/procedures:
Carer: Name: Address: Phone number: Email:
88 Advanced MS - a carers handbook If carer can’t be contacted, details of other family or friends: Name: Address: Phone number: Email:
Name: Address: Phone number: Email:
GP: Name: Based at: Phone number: Email:
Care agency details: Name: Based at: Phone number: Email:
Care package details (including how funded):
Prescription Exemption Certificate number: Patient’s religion:
Advanced MS - a carers handbook 89 Information for paid carers in the patient’s home
Daily routine:
Morning:
Afternoon:
Evening:
90 Advanced MS - a carers handbook Weekly routine:
Monday Tuesday Wednesday
Thursday Friday Saturday
Sunday
Advanced MS - a carers handbook 91 Things the patient likes Ideal room temperature: to eat:
Things they like to do: Normal body temperature/ blood pressure/pulse:
What upsets the patient: Transfer method:
What calms them: Pet care information:
Details of personal items (such as false teeth, glasses, hearing aids):
92 Advanced MS - a carers handbook
Equipment and technology
A huge range of equipment Health and Social Care Trust). can make life easier for you Some basic items can be prescribed and the person you care for. by an occupational therapist, MS There’s a growing choice of nurse, physiotherapist or GP, and technology, too. be loaned out.
You’re likely to need more and Some things the NHS must more equipment as time goes on. provide. That includes The equipment you need is likely wheelchairs, environmental to change as the MS gets worse. control units, prosthetics and orthotics services, and some Before you buy or choose computer-based devices (such equipment, get professional (and as tablets with apps) that help independent) advice, especially if people with major problems it’ll cost a lot. And don’t pay VAT communicating. on it (see page 99). Referrals are usually via a GP or If you or the person with MS have other health professional. There’ll a social care assessment, be sure be a local equipment store near to mention what you need help you run by the Health Service and with. Ask if there’s equipment that local authority. could make things easier. When the person you care for Getting equipment and has a social care assessment, paying for it this might decide they should get Before buying equipment, check free equipment and technology to see if you can get it from the from their council (or trust). See Health Service (NHS) or local page 121 for more on social care council (or, in Northern Ireland, assessments.
Advanced MS - a carers handbook 95 If the person you care for gets direct than what’s seen as ‘reasonable’ payments or a personal budget (12 weeks according to the Local (see page 147) from their council (or Government Ombudsman). trust), they can use this money to pay for equipment if their care plan If someone’s condition has got says they need it. worse since their assessment, ask for them to be assessed again. If you have a carer’s assessment, you might qualify for help getting The person you care for may get equipment or technology if it some welfare benefits that can makes your caring easier. Page 127 help cover extra costs of living with a disability. These include has more on carer’s assessments. Attendance Allowance, Disability It might take a long time to get Living Allowance or Personal an assessment or to receive Independence Payment. equipment you need. You can challenge delays that are longer The person with MS (or you on they might get a grant from the their behalf) could also apply for a Access to Work programme (see grant to cover the cost. page 173).
Charities, including the MS Society, The Equality Act of 2010 says and benevolent societies might employers must pay for help you get or pay for equipment. ‘reasonable adjustments’ so Check out page 143 for ideas of who that disabled people aren’t at a to apply to. Ask an occupational disadvantage in the work place. therapist if they can help you apply This covers equipment and for help from charities. technology.
If the equipment helps the person Local Rotary Clubs, Round Tables, with MS start a job or stay in work, Lions and Inner Wheels may also
Disabled Living Foundation and Living Made Easy The Disabled Living Foundation (DLF) has over 20 factsheets to help you choose equipment. The full list is here: dlf.org.uk/content/full-list-factsheets They have centres where you can see things demonstrated. Find where they are at livingmadeeasy.org.uk/contacts_edc.php
Their specialist website Living Made Easy covers in depth equipment and technology. This includes things to help with the home, communicating, walking and mobility, and personal care, as well as alarm systems.
livingmadeeasy.org.uk/
The Research Institute for Disabled People (previously RICA) have reviews of lots of equipment on their website, too.
ridc.org.uk/
Advanced MS - a carers handbook 97 give grants. If you’re a member of •• across the UK are Equipment a local place of worship, they could Demonstration Centres where help get you what you need, too. people try disability equipment and get professional advice Failing all else, and if you can afford before they buy. Find them to, you can buy equipment yourself. at livingmadeeasy.org.uk/ contacts_edc.php Tips: •• the assistive technology •• sites that help people department of your local buy and sell new and hospital might help with used equipment include equipment. If there isn’t one, disabilityequipmentservice. try their Speech and Language co.uk, themobilitymarket.co.uk or Occupational Therapy and disabledgear.com Departments, or your GP •• independentliving.co.uk is a •• other organisations that website featuring things that help disabled people with support daily living, mobility technology are Abilitynet, and independence Everyone Can and Disabled Living. Details are on page 169. Pay no VAT •• computer equipment only for Disabled people don’t have to disabled people, such as things to pay Value Added Tax (VAT) on help you see or hear better. This equipment designed or adapted to won’t include laptops and tablets help them with their day to day lives. You must get the VAT taken off This means a price cut of 20%. the bill before you pay it. Any They shouldn’t pay VAT on bills to VAT you’ve already paid can’t be have this equipment serviced or claimed back directly from the maintained either. VAT authorities. But you can ask who charged you the VAT to pay it Ask whether you can be exempt back to you. Read more on this at from VAT before ordering or paying gov.uk/financial-help-disabled/ for equipment. vat-relief
The seller must be registered for For a full list of equipment exempt VAT. The disabled person just has from VAT go to gov.uk and put to sign a form saying they have a ‘VAT relief disabled’ in the search chronic illness or disability. box and look for the help sheets.
These are just some of the things AskSARA you can save VAT on: The Disabled Living Foundation •• building work, such as having has a free self-help guide grab rails, a toilet, stair lift or website called AskSARA. alarms fitted, or widening doors Just choose what the person •• medical and surgical you care for needs help with appliances (including (the home, their daily activities incontinence products) or health). Answer a set of •• wheelchairs or mobility scooters questions and it’ll give an •• specialist beds instant customised report with •• hoists suggestions for equipment. •• commodes Find it at asksara.dlf.org.uk
Advanced MS - a carers handbook 99 Equipment for moving someone Hoist – sometimes mobile and There’s equipment to help lift or placed on the floor but often fitted move the person you care for. An to a wall or on tracks in the ceiling. occupational therapist, MS nurse Several rooms can be fitted with or district nurse will show you how their own hoist. to get and use it. They’re mechanised and help get Transfer boards – wooden or plastic someone dressed or to move them boards of different shapes. A from the bed to a commode or person with MS (or their carer) can wheelchair. They can be used to let use them to slide from one place to someone do exercises standing up. another, such as from bed to chair A gantry hoist is a free standing or wheelchair to car seat. frame with hoist rail between two Bed hand (or handling) blocks legs. Gantry and ceiling hoists are – blocks with handles that the much easier for a carer to use on person with MS uses to help move their own than a mobile hoist. themselves into bed. Sling – often used by attaching it Bed pole hoist – the frame fits to a hoist. A ‘toileting sling’ is less under the base of the bed. It lets than a full sling and gets someone someone sit up in bed, change on and off the toilet. Examine it position or get in and out of bed. regularly for signs of wear and tear Not to be used to lift the whole Transfer or handling belt – wide, weight of someone from the bed. padded canvas belt with handle Sliding sheet – made from a low grips. It helps protect your back by friction material that feels slippery. making it easier to help the person Essential for moving or turning wearing it to stand or move short someone over in bed without lifting distances, such as between a bed them. Avoids damaging their skin or and a wheelchair or between seats. causing pain or pressure sores.
100 Advanced MS - a carers handbook Leg lifter – the foot goes into a in beds or chairs, stopping them stirrup loop connected to a long sliding forward. strap. It lets you or the person you Other ways of helping people care for raise their leg when getting move around the home include in and out of a wheelchair and stair lifts and lifts that go through putting on clothes and shoes. one floor of the house to another. Positioning aids – supports that The DLF has a factsheet on these: help someone sit comfortably dlf.org.uk/factsheets/stairs Bathing A shower seat means the person “We had two shower with MS can shower without heads installed, needing to stand. Some commodes one at standing height, can double as a shower chair. one at sitting height. Each is controlled The shower can also be adjusted separately by a battery so it can be held by hand or have powered unit. two settings: a higher one for you and one lower down for them. My wife only needs to push a single button The Disabled Living Foundation for her (sitting height) has factsheets to help you choose shower to come on, which equipment for bathing and at a pre-programmed showering is right for you and the temperature ... person you care for: I push a different button dlf.org.uk/factsheets/showering and the standing-height shower comes on, at my dlf.org.uk/factsheets/bathing preferred temperature.” A wet room can be a great help, Peter giving you more space for easy nurse. They ‘ll assess you and suggest access and flexibility. things to meet what you need.
You might be able to get a grant Among things available are: to help convert a downstairs room into a wet room - see pages 110 •• raised toilet seats that fit onto (Disabled Facilities Grant). the bowl to make it higher. This makes it easier to use for Using the toilet people who struggle getting Before choosing equipment get up and down advice from a continence service, •• commodes. They come with or your GP, occupational therapist or MS without wheels. Some can be
102 Advanced MS - a carers handbook used in a shower or fit over the •• knob turners to fit over toilet with the bucket removed controls on cookers and other for increased support equipment •• toilet frames (fixed to the floor •• non-slip chopping boards or free standing) •• ‘perching stools’ so that a •• support rails to fix to the wall person can sit while they wash by the toilet. Like toilet frames, up, cook or iron these give something secure to put a lot of weight on (unlike Find these and other ideas at wash basins or radiators) livingmadeeasy.org.uk (go to •• transfer equipment (such as ‘House and home’ section on the boards) to help someone on front page, then click on ‘Kitchen and off the toilet and household’) •• specially designed hoists and The bedroom slings to help someone on to For the bedroom there are: and off the toilet
The DLF have a factsheet about •• mattress elevators and bed equipment, with tips for using the raisers to move someone from toilet dlf.org.uk/factsheets/toileting lying flat to sitting up •• rails at the side of the bed to Kitchen, bedroom and other help someone get on and off it equipment •• leg raisers (shaped pieces of Special kitchen utensils to help foam that support the leg and with preparing food and eating ease pain) include: •• slide sheets to help you move •• easy grip knives and forks someone across the bed and •• jar and ring pull openers move legs over the side of it •• ‘speaking scales’ •• electronic adjustable and raising beds for the comfort of •• two-handed cups the user and the carer •• large handles to fit over taps
Advanced MS - a carers handbook 103 For seats and wheelchairs to leave them for a while. You might need: They wear the alarm (see next •• pressure relieving cushions page) or pull a cord or press •• riser/recliner chair and chair raisers a button, for example, on the •• portable wheelchair ramp phone. In an emergency it activates the home phone line. An •• head and side supports operator speaks to them and calls General moving you, the emergency services or someone nearby with keys. These could be helpful: •• mobile electric hoists with slings These services are often loaned, •• reachers and grabbers let either for free or for a charge, someone, especially with from your council (or, in Northern a weak grip, pick up things Ireland, your Health and Social without bending or straining. Care Trust). Contact their social Some have magnetic ends to care services department. The pick up metal things. person you care for might qualify to get one of these systems Our booklet ‘Adaptations and your as part of a wider social care home’ has ideas for equipment and assessment (see page 121). advice room by room and in the garden. Find it at mssociety.org. You can also pay a private uk/care-and-support/everyday- company. The Living Made Easy living/home-adaptations website lists some. Your council (or trust) will also know of local Alarms, telecare and other ones. You might get one for free technology if it’s been agreed as part of a Community alarms Continuing Healthcare package A community alarm is worth from the NHS. thinking about if the person you Whether private or from the care for is at risk of falling. It can council, it costs around £5 a week. make you worry less if you need
104 Advanced MS - a carers handbook These alarms are part of The Disabled Living Foundation something called ‘telecare’. This also has a factsheet on this: also covers systems that detect dlf.org.uk/factsheets/factsheet_ smoke, gases, a fall, an epileptic telecare.pdf seizure, and much more. Carers UK have a booklet called ‘Telehealth’, on the other hand, ‘What can tech do for you?’ It is using technology to monitor covers technology, including someone’s health long distance, telecare, alarm systems and such as blood pressure. It can also telehealth. Download it here pre-set doses of medication that carersuk.org/help-and-advice/ need taking. technology-and-equipment/tech- for-you For NHS information on telecare alarms check out nhs.uk/ Conditions/social-care-and- support-guide/Pages/telecare- alarms.aspx Advanced MS - a carers handbook 105 Environmental control Examples of an ECU are Google units (ECU) Home or ‘Alexa’, the voice- These are useful if the person activated device from Amazon you care for loses much of their (using their Echo speaker). mobility or use of their hands. They’re controlled by an app to They control things like the TV, operate devices such as central lights, fans, music, the heating, heating, lights, and the TV, choose the phone, an emergency call music, create to-do lists, and help system and other devices. someone shop. It can read virtual books, and the person you care for These units use a single switch can send messages to you through that can be operated by hand, it or call for emergency help. head or chin. This means more independence and safety. It should Some people buy or rent an ECU. mean you get called on less often You might get help getting or to do things a unit can do.
106 Advanced MS - a carers handbook paying for one from the local controlling computers and smart social services department. phones by voice: abilitynet.org.uk/ factsheets/controlling-computer- This might be in the shape of tablet-or-smartphone-your-voice a Home Adaptation Grant or Disabled Facilities Grant. Or in an The Equality Act of 2010 recognises ‘Access to Work’ equipment grant these kinds of assistive technology if it helps someone with MS work as a ‘reasonable adjustment’ that (see page 173). should be made available (for example, by employers) to stop In some places you might get discrimination. one from the NHS. It can loan electronic assistive technology Alternative and Augmentative equipment to very severely Communication (AAC) disabled people so they can live technology more independently at home. These devices help people with A referral is needed through serious speech problems to a local health or social care communicate. Some use computer professional. Someone like an software to turn someone’s written occupational therapist (OT) will words into electronic speech for visit and do an assessment. them. Or they can recognise their slurred speech. Contact the Assistive Technology Team or Disablement Services at If the person you care for is this the local hospital for more details. badly affected, a speech and Your local OT department can also language therapist can suggest advise you how to get this service. technology that would suit them.
For people severely affected by Other devices are manual, with no MS, smartphones and tablets with electronic parts, such as boards low-cost assistive technology with pictures, letters or words for apps can help with their daily lives. the person to make sentences from. Abilitynet have a factsheet about
Advanced MS - a carers handbook 107 Adaptations to the home
As MS gets more severe you An assessment by an might need to make changes occupational therapist can identify to your home. These might what might make life easier for not be needed right now, but you both. They can suggest ways you could pay for the changes. think what you might both need further down the line. The local council (or Health or Social Care Trust in Northern A move to a more suitable place Ireland) can arrange a visit as part to live in might be on the cards of a social care assessment (see one day. Or the solution could page 121). Or you might get help be staying where you are and from charities, such as an MS making alterations. Society health and wellbeing grant. These changes, or ‘adaptations’, You don’t have to own your can be minor ones, such as own home to get adaptations attaching a grab rail to a wall. The made. If you rent from a private equipment chapter on page 95 landlord, they must by law make covers what might be used for ‘reasonable adjustments’. They these smaller changes. can get financial help to do this Adaptations also include bigger (see ‘Disabled Facilities Grant’ on alterations to the building. This the next page). could be fitting a lift, making doorways wider to fit a wheelchair, “I’ve had to have a replacing a traditional bathroom hoist put up in the with a wet room, converting a lounge … a hoist put garage or building an extension. up in the bedroom … a shower room built.” Lana
108 Advanced MS - a carers handbook If you rent from the council or a •• moving a bathroom or toilet housing association, they should downstairs pay for adaptations. Among •• extensions or conversions to things that could be changed are: the building (such as turning •• building ramps or making a garage into a bedroom or doors wider for easier bathroom) wheelchair access •• making external doors Paying for adaptations accessible with flat access or Pages 95 to 97 have more on automatic opening systems how smaller changes involving that use a press pad or key fob equipment can be paid for.
•• fitting a level-access (wheel-in) If you live in England, Wales or shower Northern Ireland, you might •• taking out the bath and turning qualify for a means-tested a bathroom into a wet room Disabled Facilities Grant for bigger, structural alterations. You get •• fitting lifting equipment like a these from the local council (or hoist to walls or ceilings trust in Northern Ireland). You’ll •• fitting stair/chair lifts find more details on the next page. •• installing lifts that get a person Scotland from one floor to another Scotland has a separate system. Find information on the Scottish “Mum’s condition is Government website. Go to slowly deteriorating, gov.scot and put ‘equipment so we have to plan for and adaptations’ in the search possible future events, box. There you’ll find more on such as equipment and adaptations different housing, including funding guides for different furniture home owners, council tenants and support aids.” and private renters. Lou
Advanced MS - a carers handbook 109 Wales a disability. You can be renting As well as Disabled Facilities Grants, or home owners, but you must Wales also has the Rapid Response intend to live in the property for Adaptations Programme. five years. A Disabled Facilities Grant is usually This helps pay for minor alterations means-tested. By law you should like ramps and rails for people get a decision on an application leaving hospital, or to keep them within six months and, if successful, out of hospital or residential care. you should get the money within 12 Northern Ireland months of applying. Here help with adaptations is If you don’t get a decision within arranged between the local six months of applying, write Housing Executive and Health and and ask why and ask them to Social Care Trust. make a decision. Get legal advice nidirect.gov.uk/articles/disabled- if you still don’t get a decision, facilities-grants-0 or if you’ve been stopped from applying for the grant. Go to the Disabled Facilities Grants Local Government and Social Care These are available in England, Wales Ombudsman. and Northern Ireland (Scotland has its own scheme - see prevous page). Scotland The Scottish Government They may be given by councils has information on help with to people with a disability so adaptations for all types of they can make changes to their housing. Go to gov.scot and home. In Northern Ireland these put ‘funding adaptations’ in the grants are arranged between local search box Housing Executive Grants Offices and Health and Social Care Trusts. We have a booklet ‘Adaptations To get this grant, you or someone and your home’ that has more else living with you must have information about these grants.
110 Advanced MS - a carers handbook Tips: What if we don’t qualify for a DFG? •• your local council (or trust in You could think about taking out Northern Ireland) can give you a loan, selling your home to buy advice about the scheme in something smaller or look into your area and how to apply ‘equity release’. •• if you’re in Northern Ireland read more about these grants This means borrowing money at nidirect.gov.uk/articles/ against the value of your house, disabled-facilities-grants-0 or selling it (or part of it) for a lump sum or regular income but •• as of July 2018 the highest a without having to leave it. DFG grant can be is £30,000 in England, £25,000 in Northern Get independent financial advice Ireland and £36,000 in Wales before doing this. Read more at •• Disability Rights UK moneyadviceservice.org.uk/en/ have a factsheet about articles/equity-release grants available to pay for adaptations disabilityrightsuk. Home improvement agencies, like org/housing-grants Local Care and Repair or Staying Put organisations, are run by •• they also have a factsheet housing associations, councils or on complaining if you’re charities. They help people adapt turned down for a DFG their homes. disabilityrightsuk.org/ complaining-about-local- More tips: authority-decisions •• ask your council’s housing •• this web site has more info department for local home about adaptations, including improvement agencies or DFGs: foundations.uk.com find them here (England only) findmyhia.org.uk
Advanced MS - a carers handbook 111 •• in Scotland there’s •• agree with your builder that careandrepairscotland.co.uk you won’t be charged VAT before you accept any tenders •• if you live in Wales check out careandrepair.org.uk/en/ •• don’t start any work and then apply for grants. If you do, you’ll •• Northern Ireland has nihe.gov. uk/index/advice/disability/ be turned down. Apply first agencies.htm Our booklet ‘Adaptations and your home’ looks at alterations room •• you shouldn’t pay VAT on building work to adapt a home. by room, how to fund these, and Read more on page 99 practical things to think about when altering a home. Help with moving around
There’s a lot of help available a fall. It also covers ‘transferring’ if the person you care for has (moving someone from one seat problems getting around to another or to a bed). the house or being mobile Wheelchairs outside the home. Wheelchairs are provided on Inside the home a free long-term loan from ‘wheelchair services’. This is Contact your local social services often part of a hospital but is department if the person you sometimes run by an outside care for needs help to move company on behalf of the NHS. more safely and easily around the home. Ask for a needs Who can have a wheelchair is assessment for them. different from area to area. No matter where the person lives, they’ll The kind of help they might get need to be referred to the service. includes grab rails and portable wheelchair ramps. Check out page This is usually done by a GP, an 121 about social care for more on occupational therapist (OT), or their this assessment. hospital doctor. They’ll then have an assessment, usually by an OT. Download our factsheet ‘Posture and movement 2’ from our Wheelchairs can be manual or website. Put ‘posture and powered. Powered wheelchairs movement moving well with MS’ in are also known as electric the search box on our home page. wheelchairs or powerchairs.
It has advice on helping someone Which wheelchair someone gets with walking, getting in and out of will depend on the service’s chairs or cars, and getting up after
Advanced MS - a carers handbook 113 criteria. You can only get a scheme. They can use their budget powered chair if you can’t use a to pick a wheelchair from the NHS manual one. The wheelchair must range or add their own money to be for use indoors and outdoors. buy something different. Ones made only for outdoors Most people wait over three aren’t provided. months for a wheelchair. The The person you care for might get rest wait even longer. Remember an NHS voucher. It covers the cost of adaptations or replacement chairs a standard wheelchair from the NHS can also take a long time to get. range of chairs that’s been judged Some people buy a wheelchair if as meeting their needs. It might not they don’t qualify to get the type be possible to use the voucher to of chair they want on the NHS get a powered wheelchair. (or they want a special one not If the person wants a higher available on the NHS). Examples standard one from a slightly wider are ultra-lightweight wheelchairs NHS range of chairs, they can get or powered ones. that using the voucher. They then For people who are very severely make up the difference with their affected by their MS, there are own money. This is called the electric wheelchairs that don’t ‘partnership’ option. Repairs are free. need a joystick control. The ‘independent option’ is to own These wheelchairs have a touch the wheelchair, using the voucher pad instead. Or they’re controlled to pay towards it, with the owner by breathing (called ‘sip’n’puff’) or making up the difference. The owner by movement of head, voice or is responsible for repairs, although their tongue. the voucher covers some of that. When choosing something like a To give people more choice, wheelchair, also get input from an vouchers are slowly being occupational therapist, the family replaced by a personal budget and the carer.
114 Advanced MS - a carers handbook Advanced MS - a carers handbook 115 A wheelchair needs to be tailored Scotland to the individual and situations The wheelchair voucher where it’ll be used. They need to scheme doesn’t operate in take account of how the MS is Scotland. A GP or healthcare likely to develop in the future. professional will refer someone A wheelchair must provide proper to one of five Wheelchair support and pressure relief. It may and Seating Services (WSS) need carer controls or be a ‘tilt-in- centres. An assessment may space’ chair so the person using it be needed if someone’s needs can change position if they can’t are complicated. The centres move their body weight. provide manual and powered wheelchairs, together with repair and maintenance. Insurance Read more about wheelchairs and Wheelchairs from the NHS other mobility aids by going to nhs. voucher scheme are insured uk and putting ‘choosing mobility against damage but not if its equipment’ in the search box. owner choses the ‘independent RiDC (Research Institute for option’. Then they must insure it. Disabled Consumers, before To protect against it being stolen or 2018 known as Rica) is a charity damaged in a fire, the chair can be that gives advice and reports on added to your household insurance. things like: Or it can be insured separately •• making a car wheelchair through a range of companies. The accessible MS Helpline has details. •• wheelchair accessories It’s recommended that a •• getting wheelchairs in and out wheelchair has public liability of cars insurance that covers accidental •• powered wheelchairs, scooters damage to property and to other and buggies people. The wheelchair service •• using wheelchairs on public can advise you on insurance. If the transport and when flying person with MS gets a powered wheelchair or scooter from Tips: Motability, they can advise on •• ridc.org.uk has lots of useful insurance, too. info on mobility, travel and If your wheelchair is ‘class 3’, it technology for use in the home has a maximum speed of 4 miles •• read more about rules for per hour off the road, and 8 miles scooters and wheelchairs, per hour on the road. You must including tax and insurance, at register it with the Driver & Vehicle gov.uk/mobility-scooters-and- Licensing Agency (DVLA). Slower powered-wheelchairs-rules ‘class 2’ wheelchairs don’t need to •• this site themobilitymarket. be registered. co.uk is for people buying or
Advanced MS - a carers handbook 117 selling used mobility and Other walking aids disability products For information on crutches, •• the Disabled Living Foundation walking sticks, and wheeled has factsheets to help you walking frames (rollators), check choose which mobility aid out the RIDC webpage ridc.org.uk/ is right for you. These cover content/walking-aids wheelchairs: On that link you can download dlf.org.uk/factsheets/manual- their guide to wheeled walking wheelchairs aids. The Disabled Living dlf.org.uk/factsheets/powered- Foundation has a factsheet on wheelchairs choosing walking aids at: dlf.org.uk/factsheets/walking Public transport Buses Using public transport is getting RIDC have tips on bus travel easier but include extra time for travel. with someone in a wheelchair at ridc.org.uk/content/buses Check ahead for disabled access and toilets. Have an alternative back-up Disabled people in England who plan in case things fall through. qualify can get free off-peak travel on all local buses. Someone who The RIDC website has lots of advice travels with them might get a if you need to use public transport, discount too. Contact your local broken down by how you’re council for details or visit: travelling. gov.uk/apply-for-disabled-bus-pass ridc.org.uk/content/accessible- public-transport
Advanced MS - a carers handbook 119 Similar schemes operate in Wales. Motability Find details at beta.gov.wales/ This charity works with people public-transport with disabilities to use the parts of their benefits that help with In Scotland the person you care for getting about. can claim a National Entitlement card that gives them (and you) free If the person you care for needs an travel on most bus services. outdoor electric wheelchair, scooter or a car, they can use the Motability These are applied for and scheme to pay for it if they get: renewed at your local council. For more about who qualifies, visit •• the higher rate mobility mygov.scot/disabled-bus-pass component of Disability Living Get half fare bus and train Allowance (DLA) travel in Northern Ireland with a •• the enhanced rate mobility Smartpass. Learn more at: component of Personal nidirect.gov.uk/articles/free-and- Independence Payment (PIP) concessionary-bus-and-rail-travel •• or War Pensioner’s Mobility Supplement Trains If the person you care for has a They can hire a car (including Disabled Person’s Railcard this specially adapted ones), powered allows someone (a carer or not) wheelchair or mobility scooter. The to get a third off the price of their PIP or DLA mobility component ticket when they travel with them. will be paid directly to Motability. Call 0345 605 0525 or visit Contact Motability for details on disabledpersons-railcard.co.uk 0300 456 4566 or visit Find helpful tips on train travel with motability.co.uk someone using a wheelchair at ridc.org.uk/content/trains
120 Advanced MS - a carers handbook Social care – getting help from the council
Social care covers a range of To arrange one, contact the social services you and the person services department of their local you care for might be able to council. Someone will be sent to talk to them about what they need get from the council. help with. Social care services help people Afterwards, if they qualify for help, with an illness or disability to live they’ll get a care and support plan. an independent life. They include: This will say what services the council is willing to offer and how •• specialist equipment, technology and changes to much they’ll pay towards this. your home to make life easier Social care often isn’t free. (ramps, grab rails, wider doors, Most people pay something and so on) themselves towards these •• someone who comes to your services, depending on their home to help the person with money situation. To decide MS do things like getting whether they pay, and, if they do, dressed and washed how much, the council will look at •• day centres their finances. •• residential care If their ‘capital’ or ‘assets’ are worth •• support for family and carers, more than a certain amount, they’ll such as respite care and breaks have to pay all the costs. •• information This amount in July 2018 was The person with MS you care for £23,250 in England, £24,000 in can ask to have an assessment to Wales and £26,500 in Scotland. see what services they need.
Advanced MS - a carers handbook 121 If someone has assets under these amounts they may have to Northern Ireland pay some, but not all, of the costs. If you live in Northern Ireland, your local Health and Social When social care services make Care Trust arranges social care things easier for the person you services. Where we mention care for, they make your life the council in these pages, for easier, too. you this means your local trust. He or she might go to a day centre, or have a short break or Help for carers is part of social some respite care. This gives you care, too. Read more on what a much needed break (see ‘I need help you might get on page 127 a break’ for more on page 47). (‘Carer’s assessment’)
The person you care for might Whether you get what you need also qualify for a sitting service or also depends on what part of the for someone to come and provide country you live in and how your care in their home. That means local council (Health and Social someone can do jobs that you Care Trust in Northern Ireland) were doing on your own. manage their finances.
Personal care in Scotland Personal care is free in Scotland to people 65 and over no matter how many assets they have. But first their local council will assess them and decide if they need it. The Scottish Government has said that from April 2019 personal care will be free for people under 65 too. Page 177 explains what personal care covers. People of any age can get free nursing care if they’ve been assessed as needing it.
122 Advanced MS - a carers handbook Advanced MS - a carers handbook 123 Carers often say they need to be They have tips for someone with ‘pushy’ to get what they want. MS on preparing for an assessment. They often find they need to go Find them on our website by looking for services because searching ‘social care booklet’ or get they’re not promoted enough. one from the MS Helpline.
Many carers think social care will Tips: be closely linked to NHS medical care but find the two don’t work •• to save time, the person you care together like they expect. for can have their assessment at the same time you have your You may find yourself falling carer’s assessment through gaps between parts of •• you can have your these two systems. Carers say assessments separately if that, with experience, you’ll learn it’s difficult to talk when the to avoid this and spot pitfalls person you care for is there before you hit them. •• keep a list of all the care You’ll probably be surprised to services you get (plus letters find how medical and health care and emails) to share with staff professionals don’t work together in the hospital like you’d expect. •• try and get a named social They often do their bit, then move worker if you can. That’ll help on to the next person. It’s left with long‐term care. A duty to you to connect the different social worker won’t know your services, coordinate it all and keep situation well the show together across the Our social care package health and care teams. It’s important you get the right We have booklets about social package of care (the mix of social care, one for each of the four care services). This is especially countries of the UK. true if you’re a carer who goes out to work.
124 Advanced MS - a carers handbook Speaking to people in a local You have the right to appeal carers support group or MS against a decision not to give Society group can point you you help. You’ll find more about towards what’s worked for other challenging a decision on page 130. people. They’ll know what your local council is willing to offer. If you have no choice but to pay towards care services, here are Other carers will have suggestions ways of raising money: on ways of organising the filing and documents that come with •• using income from pensions, having a care package. They’ll renting out property, have tips on coordinating the care investments or by carrying services you end up choosing. on working •• claiming Attendance Allowance Carers can share their ideas on (it’s not means-tested) how to get treatment at home so •• asking family or friends for you avoid the person you care for financial help going to hospital (see page 80 for more on this). •• moving to a smaller home to free up cash And if you have a complaint about •• renting out a room in your a service, they’ll have ideas of home what you can do. •• equity release (this lets Tips for self-funders someone get a lump sum or regular cash against the value Do you or the person you care of their property) for may have more assets than the limits allow and need to pay •• deferred payment agreements for care yourselves (‘self-fund’)? (for an explanation see page 176) Or the council decides you don’t •• seeing if you qualify for NHS need help. What then? Continuing Healthcare (see page 63) or NHS-funded nursing care
Advanced MS - a carers handbook 125 Before making any decisions, nhs.uk/Conditions/social-care- get advice from an independent and-support-guide/Pages/ financial advisor who knows funding-your-own-care-self- about paying for care costs. funder.aspx and You’ll find more advice for self- funders at these two websites: moneyadviceservice.org.uk/en/ articles/self-funding-your-long- term-care-your-options
126 Advanced MS - a carers handbook My carer’s assessment
The law says carers now •• driving lessons (to get the have the right to a ‘carer’s person you support from A to B) assessment’. This is when •• gym membership (so you can the council of the person you keep fit) support looks at what help Or it could arrange for the person you need to care for them. you care for to get support, which would then make your life easier. To have a carer’s assessment, get in touch with the social services The assessment could give you department of the council of money (called direct payments) to the person you care for, or the spend on things agreed on in your council’s contact centre. support plan. Or the local council Having an assessment could help might provide what you need. you out. If it decides you qualify Whether you pay for this depends for help, then a support plan is on your council (not all charge). If the made for you. It looks at ways person you care for gets services, of helping you with a range of their money situation will be looked social care services (social care is at as part of their assessment. explained on page 121).
Your assessment could help you Northern Ireland get things such as: If you live in Northern Ireland, your local Health and Social •• a break from looking after the Care Trust arranges carer’s person you care for assessments. Where we •• help with transport costs, mention the council on these housework or gardening pages, for you this means your local trust.
Advanced MS - a carers handbook 127 What happens during the You can have an assessment even assessment? if the person you support had an Someone from the council of the assessment themselves but they person you care for will ask you didn’t qualify for support. questions. These will cover: You can have one even if the •• your role as a carer and how person you care for decides not to it’s affecting you have their own assessment.
•• your health, including physical, If the council decides you don’t mental and emotional issues qualify for support, they must give you information and advice on •• how you feel about caring for other services that could help you. someone and what choices you want to make about this You can appeal against the decision. •• how being a carer affects your You can ask to be assessed again if work, study, training and leisure your caring role changes a lot, for example, if the MS of the person •• the impact of caring on your you care for gets worse. social life, relationships and what you want from life How long does this take? In 2016 Carers UK found that •• housing issues half of carers waiting for an •• planning for emergencies assessment got one within six months. But almost one in three People with MS can also have their waited longer than that. needs assessed by their council. If you and the person you support Will it make a difference? both agree, you can both be There’s no guarantee a carer’s assessed at the same time. Or be assessment will give you all you assessed separately if you don’t need. You’ll only find out if you ask want to talk about the person you for one. Some people have found care for in front of them. them very useful, others haven’t.
128 Advanced MS - a carers handbook Over 2,000 carers were asked Tips: about their assessments:* •• before your carer’s assessment •• over half got some level of make sure you’re prepared. support for themselves or the Inside this handbook you person they care for should find an insert (‘Carer’s assessment checklist’) that •• 1 in 4 got financial help for a break helps you to be ready •• 1 in 4 got practical help at home •• Carers UK has more •• 1 in 4 got more support for the information on carer’s person they cared for assessments at carersuk.org (click on ‘practical support’ in •• 1 in 3 found their assessment the Help and Advice section) helpful or really helpful •• if you’ve had an assessment, it •• 1 in 5 found it no help should be reviewed regularly because what the person you These carers were looking after care for needs, can change people with lots of conditions, not just MS or advanced MS. “My hubby was my sole The person you care for is severely carer for 11 years, before affected by MS. So it’s hoped you’d we got help in. He was qualify for more support than dead against the idea many of those carers got. of having in extra care at home. He felt it was “I’ve had a carer’s his job and his job alone assessment. I felt it was to care for me. But five a waste of time, to be years on and we’re both honest. It wasted a huge so glad we did.” amount of my time and Pauline absolutely nothing came out of it” * ‘Prepared to Care?’ by Carers Week, 2013 Andrew
Advanced MS - a carers handbook 129 I want to complain or appeal
You can complain about a •• you qualify for services but feel medical service from the not enough is being offered Health Service (NHS) or a Find information on appeals at social care service. Or you your local library or on some might wish to appeal against a council websites. decision you don’t agree with. Tips: Social care services •• your local MS Society group, You have a right to appeal if carers group or Citizens Advice you think your council (or trust could also help (get details in Northern Ireland) made the from the MS Helpline). Or use wrong decision about the care an advocate and support you or the person •• Disability Rights UK has a you care for get. factsheet about appealing You can also complain if you’re against decisions about social not happy with a service once you care here disabilityrightsuk. get it. org/complaining-about-local- authority-decisions Appeals •• the MS legal officer at the You can appeal if: Disability Law Service helps •• your council (or trust) decides people in England and Wales you don’t qualify for support with welfare benefit appeals but you feel you should and legal issues with services and community care (see •• you feel they didn’t look at all page 172) of your needs when they made their decision
130 Advanced MS - a carers handbook Complaints about making a complaint First take your complaint to healthwatch.co.uk/help- whoever gives you the service. making-complaint This could be your council (or trust •• in Northern Ireland complain in Northern Ireland) or a private to your local Health and company. You could also speak Social Care Trust. You’ll find to your social worker (if you have details on how to here: one) or local social services team. patientclientcouncil.hscni.net •• or you can contact the If that doesn’t work, and the organisation that regulates service comes from the council (or health and social care in the trust), ask to see their ‘complaints part of the UK you live in procedure’. This tells you how to (details on page 168) complain, how it’s handled and how fast they should reply. •• your local councillor or Member of Parliament (or member of Find the procedure on their website the devolved parliaments and or call them. You can also get it assemblies) might take up your from your library or social worker. complaint, too
Complaining doesn’t mean your If you don’t get a reply from the service will stop or be cut back. service your complaint is about, It’s important services learn from or you aren’t satisfied with their complaints so that they can be response, report it to the local made better. government and social care ombudsman. Find details on
More tips: pages 167-168. •• if you live in England, Healthwatch can also find someone to advise you
Advanced MS - a carers handbook 131 Medical care make your complaint, who to send it to, and how soon you can Unhappy about care from the expect an answer. The PALS or Health Service? The first step is PASS service can help you make to speak to someone from the an official complaint. service you used. When you go to meetings about You might be able to get things your complaint or have to deal sorted out without needing to with paperwork, you can get help make an official complaint. You from an independent advocate. can involve a social worker if you Your local council (or trust) can have one. find you one. If you want to make a complaint For more on complaining about about a hospital in England or a medical or health care service Wales, ask to speak to someone from the NHS, check their own from its Patient Advice and information at nhs.uk (put ‘make a Liaison Service (PALS). They’ll help complaint’ in the search box on the you try and settle your complaint front page) or take it further if you need to.
Scottish hospitals have a similar Tips for England and Wales: service - the Patient Advice and •• how to use the PALS system Support Service (PASS). Northern is explained at nhs.uk/ Ireland has the Patient and Client NHSEngland/complaints- Council patientclientcouncil.hscni.net and-feedback/Pages/nhs- complaints.aspx If you’re still not happy, ask for a copy of the service’s complaints •• if you’re not happy with the procedure. It tells you how to response from PALS and you live in England, POHWER gives
132 Advanced MS - a carers handbook free advice (details on page Tips for Northern Ireland 167) or gives you an advocate •• find full details on how to make •• Healthwatch can also find a complaint at nidirect.gov. someone to advise you uk/articles/make-complaint- about making a complaint against-health-service at healthwatch.co.uk/help- making-complaint More tips: Tips for Scotland: •• you normally must complain within 12 months of when an •• find information about event happened or when you complaining in Scotland at first became aware of a problem nhsinform.scot/care-support- and-rights/health-rights/ •• you can contact the feedback-and-complaints/ organisation that regulates nhs-scotland-complaints health and social care in the part of the UK you live in •• Patient Advice and Support (details on page 167 and 168) Service (PASS) offer advice and support to make a •• unhappy with how your complaint. This service is complaint has been handled available through your local locally? Contact your Citizens Advice ombudsman (see pages 167-168) •• if the NHS has investigated I’m not happy with a GP your complaint and you’re still You can make a complaint at the not satisfied, you can take it surgery. Ask for their complaints to the Scottish Public Services procedure. Keep a written record of Ombudsman (SPSO) (details any conversations you have with on page 168) staff there about your complaint.
Advanced MS - a carers handbook 133 You must usually make the how, visit nhs.uk and put in the complaint within 12 months of search box on the home page the thing happening that you’re ‘how do I change my GP?’ unhappy about.
Or you can complain to the local NHS (details on previous page). “There are things there You’ll find some useful information but you have to here, too: which.co.uk/consumer- work for them… rights/advice/how-to-complain-if- fight for them. youre-unhappy-with-your-gp-or- We don’t let things drop. gp-surgery We will look into all possibilities and If you’re not happy with the take our concerns to response, try the ombudsman. Their the highest possible details are on pages 167 to 168. authority You might be able to register with Rob another GP locally. For details on
I want a second opinion If you’re not happy with answers or treatment the person you care for gets in hospital or from a GP, you have a right to a second opinion. For details go to nhs.uk and put ‘second opinion’ in the search box. If you’re having problems getting MS drugs check out the ‘I’ve been denied an NHS treatment’ sections of this web page at mssociety.org. uk/about-ms/treatments-and-therapies/getting-treatment-for-ms
134 Advanced MS - a carers handbook Money and benefits
MS hits finances hard, with hard to find your way around but extra costs to deal with and help is available. maybe lost incomes. Benefits are changing. So it pays to check now and again if there The person with MS might have to have been changes to what you stop working. If you need to give might qualify for. This is especially up work to help care for them, true if the MS gets worse. that’s two incomes lost. You can find yourself raiding your savings These websites have ‘benefits or getting into debt. calculators’ that tell you what benefits and tax credits you Disabilities mean additional qualify for: expense, such as extra costs of getting around, special turn2us.org.uk entitledto.co.uk equipment, changes to the home, insurance costs, extra heating and Our booklet ‘Benefits and MS’ so on. goes into detail about benefits and tax credits that people with MS and Lots of carers earn too much their carers can claim. It covers to qualify for financial help with disability benefits, work-related things like adaptations, respite or benefits, pensions, loans, and help extra care at home. with fuel and transport costs. But you can get help from the benefits system. And the more In Scotland certain benefits, severely affected the person you including ones for carers, are care for, the more support there is. going to be run differently to other parts of the UK. This will You both could get benefits, even start to happen from mid-2018. if you still work. The system can be Advanced MS - a carers handbook 135 A Blue Badge will help with Carer’s Allowance parking if you drive someone with Carer’s Allowance is a benefit you MS around. might get if you look after someone for at least 35 hours a week You might also get reduced bus and train fares when you travel Who’s it for? with them. Your council or local To get it, you must: transport operators have details. •• be at least 16 (there’s no upper Tips: age limit)
•• Disability Rights UK have a •• spend at least 35 hours a web page that lists all the week caring for a person who benefits carers can claim gets one of the following: disabilityrightsuk.org/ Attendance Allowance, the daily benefits-checklist living component of Personal •• if you need help filling in Independence Payment or the benefit claims or having middle or highest rate of the assessments, people at a local care component of Disability Citizens Advice, carers group Living Allowance or MS Society group can help •• earn no more than £120 a •• the MS Helpline, Citizens week from employment Advice, charities, professional (correct in July 2018). This is benevolent funds and online taken into account after taking organisations can all help you away the tax you pay, National through the benefits system. Insurance contributions, half of any payment you make You might find the following benefits towards a pension and certain especially useful to know about. care costs
•• not be in full-time education (that’s 21 hours or more a week) You don’t need to be living with the person you care for. 136 Advanced MS - a carers handbook
What can I get? (0345 608 4321); textphone The Carer’s Allowance is a 0345 604 5312 set amount, you pay tax on •• in Northern Ireland call 0800 220 it and, depending on your 674; textphone 028 9031 1092 circumstances, it may be •• download a form from gov. affected by the benefit cap. uk/government/publications/ From November 2016 Carer’s carers-allowance-claim-form, Allowance became a benefit that or claim online at gov.uk/ exempts you from the cap. apply-carers-allowance If you’re claiming Carer’s Tips: Allowance, you may be able to get this topped up with Income •• read all about Carer’s Support (see page 139) or Allowance in our ‘Benefits Pension Credit. and MS’ booklet. Get one by calling the MS Helpline or find How is it paid? it under ‘further information‘ You can choose to be paid every at mssociety.org.uk/care-and- week in advance, or every four support/financial-help/brief- or 13 weeks in arrears (in other guide-to-benefits words, at the end of every four or 13 weeks). Payments go straight •• Carers UK have an advice line into your bank, building society or that tells you which benefits Post Office card account. you can claim 0808 808 7777 (Mon-Wed) How do I apply for it? •• information on Carer’s To claim Carer’s Allowance, you need Allowance (and other benefits) to fill out a claim form. To get one: when you’re of pension age can be found at carersuk.org/help- •• call the Carer’s Allowance Unit and-advice/financial-support/ help-with-benefits/other- pension-age-benefits
138 Advanced MS - a carers handbook Other benefits to more than one of these Before you claim Carer’s ‘overlapping benefits’, you’ll be Allowance, check to see if the paid the higher one. person you care for gets a severe Even when you can’t get Carer’s disability premium. Allowance, if you have what’s This is extra money paid with called an ‘underlying entitlement’ benefits such as Income Support, to it, you might be able to get extra income-related Employment payments in other benefits (like and Support Allowance (ESA) or the extra money in Pension Credit). Housing Benefit. If they do get So it’s worth applying for Carer’s this premium, they may lose Allowance, even if you can’t this extra money if you’re given actually be paid it. Carer’s Allowance. Income support If you’re claiming Carer’s You may be able to claim Income Allowance, you may be able to Support if you care for someone get this topped up with Income and don’t get enough to live on. Support or Pension Credit. It can top up Carer’s Allowance. ‘Overlapping benefits’ rule Income Support is means-tested. There’s no upper age limit for Income Support is one of the claiming Carer’s Allowance, but benefits that’s being replaced by you can’t get the full amount of Universal Credit. The benefit cap both Carer’s Allowance and your applies to Income Support. State Pension at the same time. •• to claim Income Support, You also can’t get Carer’s call the Jobcentre Plus claim Allowance at the same time line on 0800 055 6688 or as you get contributory textphone 0800 023 4888. Employment and Support Allowance. If you’re entitled
Advanced MS - a carers handbook 139 •• download a claim form at gov. such as furniture, clothing or uk/government/publications/ advance rent. income-support-claim-form They must be paid back within Pensions two years. You or the person with Thinking of working fewer hours MS you support may be able to or giving up your job to care for get one if you’ve been claiming for someone? This could affect your at least 26 weeks any of these: pension. Read more on page 34. •• Income-related Employment Other sources of money and Support Allowance Budgeting loans •• Income Support These short-term, interest-free •• Income-based Jobseeker’s loans are for people on a low Allowance income to spend on basic costs •• Pension Credit
140 Advanced MS - a carers handbook You can borrow from £100 to £348 Centre Plus office or download if you’re single, £464 if you have it from gov.uk/budgeting- a partner and £812 if you or your help-benefits/how-to-claim partner claim Child Benefit (limits •• in Northern Ireland some as of July 2018). details about budgeting loans are different. Find out more How much you can borrow at nidirect.gov.uk/articles/ depends on your circumstances, budgeting-loans such as whether you have savings or a family. If you claim Universal Grants Credit, you may be eligible to Help from the MS Society and apply for a similar ‘Budgeting other places Advance’ instead. The MS Society has two grant Tips: funds for people with MS and their carers: •• find more on these loans in our ‘Benefits and MS’ booklet •• our health and wellbeing grant •• if you’re a member of a credit •• our carer’s grant union and have saved a bit Health and wellbeing grants over a period of time, you can can help towards equipment, often get very low interest adaptations to the home, respite small loans breaks and other things that •• the website disability-grants. improve the health and wellbeing org can identify grants of someone with MS. available for people with MS and their carers (for things like Carer’s grants offer support for equipment, holidays, housing carers with leisure activities or and bills) personal development. •• apply for a loan by filling in the You don’t have to be a member of claim form from your local Job the MS Society to apply.
Advanced MS - a carers handbook 141 Benefits and hospital stays If the person you care for goes into hospital or residential care, it can affect benefits you or they claim.
Personal independence payment (PIP), Attendance Allowance and Disability Living Allowance (DLA) stop after a total of four weeks (either in one stay, or several stays, where the gaps between stays are no more than four weeks each time).
With the person with MS too ill, it’s usually the carer who tells the DWP about the hospital stay.
Hospital stays also affect benefits you claim like Carer’s Allowance or Cold Weather payments. Your Carer’s Allowance will stop after four weeks. This also applies to the carer’s amount of Universal Credit. You must tell the benefits authorities when the person you care for goes into hospital or residential care, and when they come out.
Find more details about benefits and stays in hospital at disabilityrightsuk.org/benefits-hospital
Your local MS Society group may Tips: give grants from their own funds. •• find details of these grants, If there’s a group in your area, what they can and can’t be we’ll send your application on to used for, plus the form you fill them to consider first, or you can in, at mssociety.org.uk/grants contact them directly. If they can’t •• or contact the Supporter Care help, or can’t cover the whole cost, team on 0300 500 8084 or they’ll ask our grants team to email [email protected] consider a top up.
142 Advanced MS - a carers handbook Other grants and trusts for people who were in certain jobs Welfare schemes give grants to or industries, including the armed cover emergencies. Check your forces. Benevolent societies tend local council’s website to see what to get overlooked, so often have a their scheme provides and how to lot of money to give out. apply to it. Tips: If you have an urgent need for •• your local MS Society group or cash that you weren’t expecting, Citizens Advice might know of you might be able to get ‘local trusts or benevolent societies welfare assistance’. that help people with MS or In England, contact your local their carers council about what help you might •• Carers Trust also gives grants. get from them. Enter ‘grants available’ in the search box on their website In Wales search for ‘Discretionary carers.org Assistance’ on gov.wales •• Carers Trust has a factsheet In Northern Ireland check out with details of around 40 other nidirect.gov.uk/articles/finance- trusts, benevolent funds and support charities that give out grants carers.org/sites/default/files/ In Scotland the Scottish Welfare media/grants_and_other_ Fund gives vulnerable people sources_of_funding.pdf on low incomes emergency and crisis grants. Apply through your •• the Turn2Us site has a grants local council. More details are at checker on this link turn2us. beta.gov.scot (search for ‘Scottish org.uk/Your-Situation/Carers Welfare Fund’). •• this site could help you find money if you’re suffering Benevolent societies can offer hardship grantsforindividuals. financial help, too. These are often org.uk
Advanced MS - a carers handbook 143 •• Disability Rights UK have benefits, have a low income or details of benefits and have certain conditions (such as grants and other help you epilepsy). You get an exemption might be able to claim at card to show the pharmacist to disabilityrightsuk.org/ get your free prescriptions. benefits-checklist Tips: Disabled Facilities Grants •• find out more by searching These are available to help with ‘prescription costs’ at nhs.uk the cost of making changes to the home. Read more about them on •• the Pharmacy 2 U service page 110. delivers repeat prescriptions to your door for free Prescription charges •• this will save you endless trips Prescriptions are free in Northern and chasing prescriptions Ireland, Scotland and Wales. Help with heating costs If you’re in England, does the The person you care for might be person you support have to pay able to get help cutting down their for more than four items in three heating bills. This might be direct months or 14 items in 12 months? help paying a bill or help towards Then they may save money if they making the home use less energy. buy a prescription pre-payment certificate (PPC). There are trusts that help people pay gas, electricity and water bills. They can also get free Contact your local Citizens Advice or prescriptions if they can’t leave the company who sends the bills. home without help. You’ll need a FP92A form from your doctor, The Warm Homes Discount hospital or pharmacist. You or Scheme could cut £140 off the they might also qualify for free electricity bill if you or the person prescriptions if you get some with MS gets Pension Credit or are
144 Advanced MS - a carers handbook on a low income. Details of who can claim it separately. More details qualifies and how to claim are at gov.uk/winter-fuel-payment at gov.uk/the-warm-home- discount-scheme/what-youll-get The Cold Weather Payment is paid to people on certain welfare For people born before 5 August benefits. If the temperature drops 1953 the Winter Fuel Payment – or is forecast to drop – below might give from £100 to £300 zero degrees Celsius (freezing) for to help pay heating bills. This is seven days in a row, then £25 is paid automatically once a year to paid automatically along with people getting the State pension. any benefits.
But if you or the person you care A stay in hospital can affect for aren’t getting it this way, you this payment. Details of which benefits you need Help paying council tax to be claiming and what to do Are you or the person you care for about hospital stays are at gov.uk/ on benefits or have a low income, cold-weather-payment and have little or no savings? If Tips: so, you may be able to apply for a reduction in your Council Tax bill. •• find help with fuel bills and using less energy across Councils make the rules about the UK at gov.uk/energy- who qualifies for help, so check grants-calculator and with them. In Northern Ireland energysavingtrust.org.uk this is called ‘rate relief’. •• for help cutting heating bills in Scotland, call 0808 808 2282 You might qualify for other or visit energysavingtrust.org. discounts, reductions or uk/scotland/grants-loans exemptions. One of these is carer’s discount. You might get •• in Wales the Warm Nest this if you’re a carer and you pay scheme offers similar help. council tax for a place you live in. Call 0808 808 2244 or visit nestwales.org.uk If you live with the person you care for
•• in Northern Ireland the If you’re the only other person Affordable Warmth scheme who has to pay council tax that offers grants to make homes lives with the person you care for, use less energy. Call 0300 200 they may qualify for a discount on 7874 or visit nidirect.gov.uk/ their council tax. To get this you articles/affordable-warmth- need to meet these conditions: grant-scheme •• you live in the same home as •• most water companies also the person you care for offer help with their bills. Find details by searching •• you can’t be their husband, for ‘help with water bills’ at wife or partner (or parent if citizensadvice.org.uk they’re under 18)
146 Advanced MS - a carers handbook •• you provide at least 35 hours a Wales and Scotland. carersuk. week of care for them org/help-and-advice/get- resources/our-factsheets •• the person you care for must get either the highest rate •• for more on discounts in of the care component of Northern Ireland contact Disability Living Allowance or Carers Northern Ireland Advice the higher rate of Attendance Line – 028 9043 9843. Or Allowance or Constant email [email protected] or Attendance Allowance search for ‘rate relief’ on the Carers UK site. You don’t have to be getting Carer’s Allowance to claim a discount. Personal budgets and direct payments If you normally live somewhere else If the person you care for had Do you usually live elsewhere but a social care assessment (see need to move in with the person page 121), and was judged as you care for? Then you can be qualifying for help, they’ll be given made exempt from paying council a personal budget. tax on your own home. This is as long as no-one is living there who This is how much their council is should pay council tax. willing to spend on the social care services that their assessment said Tips: they need. In Northern Ireland it’s the local Health and Social Care •• for more on discounts and Trust that does this, but we’ll refer exemptions contact the to councils in this section. council’s Council Tax service or advice and benefits team The council can arrange and pay for these services itself. Or, if the person •• Carers UK have a factsheet with MS and the council agree, they about council tax in England, can pay for services themselves using their personal budget.
Advanced MS - a carers handbook 147 Then the council will arrange for payments for them, your council’s the service to be paid for using a social care services department direct payment. The person with can put you in touch with places to MS can manage this themselves help you with this. You could also or you can manage this budget for use a broker. them as their carer. Tips: A direct payment gives more control and flexibility over the •• read more about personal services they get. budgets and direct payments in our booklets about social You can only pay for something care. There are separate ones with this money if it’s been agreed for the four nations of the UK in the care and support plan of the person you care for. The money •• keep careful records and files must go into a separate bank so that the reporting doesn’t account. You or they must keep become an overwhelming job records of how it’s spent. (including tax returns as the ‘employer’) If you decide to take on the responsibility of managing direct
148 Advanced MS - a carers handbook Thinking ahead
With advanced MS you The tipping point might prefer not to think too This is when you reach the point much about the future. But where the needs of the person you it can store up problems for care for are more than you can later if you just ‘take each day cope with. This can be emotionally, as it comes’. physically or financially. Planning for emergencies Maybe you’ll get to this point while the person with MS is still at home or What if you’re suddenly taken ill after they’ve gone into a care home. or an emergency means you can’t But it doesn’t mean you have to look after the person you care for? completely give up being their carer.
In some areas free ‘carers You might get support that helps emergency card’ schemes quickly you delay reaching this stage or put backup care in place if you’re helps you avoid it ever happening. suddenly not there. You carry a card with a phone number for you For example, Continuing Health or others to call in an emergency. Care might be an option (see page 63). Your GP might be able Tips: to arrange what’s called a ‘best interests meeting’ for you to work •• contact your local council or with your multi-disciplinary team Carer’s Centre to see if there’s (MDT) to discuss the options. an emergency scheme locally •• Carers UK have a webpage You or the person with MS can also about emergencies, including get help if you ask for a social care card schemes carersuk. assessment from the local council org/search/planning-for- (or Health and Social Care Trust in emergencies Northern Ireland). More details are
Advanced MS - a carers handbook 149 on pages 121 and 127. If things have Going into a residential got more of a challenge since your care home last assessment, tell them you This may be a short-lived solution want to be assessed again. or it could be permanent. If it’s for keeps, then your role as a carer The chapter ‘Looking after myself’ doing practical things for them on page 37 suggests ways of will be largely over. But you might getting support that might boost still want to help with things like how you’re feeling and protect feeding at meal times. Ask the your health. This could delay the staff how you might stay involved tipping point. in their care. This tipping point can be Care homes can be expensive. something you’re afraid of or feel Most people are expected to pay guilty about. This period can be something towards the costs of especially tough if MS is causing their care home. mental health problems in the person you care for. If the person I care for moves into “Caring on my own for residential care, must we sell our my wife is physically and home to pay for it? mentally draining. I have If their council (or trust in Northern to put on slings, Ireland) is arranging for them to take off slings, move into residential care, the several times a day. first step is for them to work out Now that takes quite a how much this will cost. bit of physical strength. I’m over 70 years of age They’ll look at the financial and obviously that leads situation of the person with MS to a few worries about, (also known as a means test). That well, how long will I be looks at what assets they have. able to keep going?” This includes savings, income Andrew (from pensions or renting out
150 Advanced MS - a carers handbook property) and the value of their •• their partner (which could be you) home if they own it. •• a relative under 16 or over 60
In England and Northern Ireland •• a relative who’s disabled they’ll have to pay for all the cost of the care home if the value of Tips: what they have is over £23,250. In Wales the amount is over £40,000 •• get advice from an and in Scotland it’s over £26,500 independent financial adviser (figures correct as of July 2018). before making any decisions •• put ‘residential care’ in the If the value is less than this, they’ll search box on our website’s get help from their council to pay home page to find more on for the care home. finding a home and paying for it Many people do sell their home to •• check out our booklet pay for a care home but it doesn’t ‘Residential care and your automatically have to happen. options’. Find it on the web pages above If someone needs to sell up to pay care home costs, they can arrange with their council to delay paying Care homes and benefits for their care (‘deferred payment’). Going into a residential home will affect some benefits. How much The council can pay their costs and depends on whether the stay is a the person going into residential short one or permanent. care pays them back when they decide to sell their home or when If the stay is short, it will also it’s sold after they die. affect your Carer’s Allowance. If it’s permanent, you’re no longer The home won’t be part of this able to claim Carer’s Allowance. means test if the following people Either way, you need to tell the are living there: Carer’s Allowance Unit about the care home.
Advanced MS - a carers handbook 151 If you get other benefits, tell into a care home. They should do whoever pays those benefits if you this within 28 days of the move. no longer get Carer’s Allowance. They’ll then update your claims. Get expert advice. Turn2us has a factsheet with more details. Put You should make sure the person ‘care homes and benefits’ in the with MS has told the benefits search box on their home page at authorities that they’ve moved turn2us.org.uk
In Scotland No matter how many assets a person has, their council can pay towards their personal care if:
•• they’re 65 or over
•• they’ve been assessed as having personal or nursing care needs which need to be met in a care home
•• they’re funding their own care People of all ages can receive payments for nursing care if they have been assessed as needing this. They’ll be expected to cover the rest of the costs of the care home, which will be the accommodation fees. To work out whether they can afford to pay these, they’ll have a financial assessment carried out by their local council. More information can be found here: careinfoscotland.scot The Scottish Government has said that from April 2019 personal care will be free for people under 65 too.
152 Advanced MS - a carers handbook Palliative care A GP, MS nurse or other health or Most people think palliative care social care professional can refer is about helping someone who someone to palliative care services hasn’t long to live. to have their needs looked at.
But more and more it’s about Legal matters getting the best quality of life for Making wills can be a difficult people in the advanced stage of a thing to bring up. Another hard condition (like MS). It can be used thing to raise is: what do you do by people who aren’t close to when the person you care for death at all. can no longer make decisions or communicate their wishes? This kind of care can be used to manage pain or symptoms that That last point is especially are hard to deal with. But it’s also important when decisions need about helping them enjoy life as to be made about what medical best as they can and making them treatment to give them. as comfortable as possible. You need documents that record This care can involve their GP, MS what the person with MS wants to nurse or district nurse. It might happen. This could be things like be given at home, in a hospital, wills or clear instructions about hospice or residential care home. what medical care should be given in an emergency. Palliative care might be useful for you, too. It can offer you some Things can get very difficult if you respite from caring and the don’t sort out things like this in chance to take more care of your advance. own needs for a while. You might feel that talking about But, when it comes to respite, not the future, especially death, will all carers will feel palliative care, be too upsetting. But leaving such as in a hospice, is right for things unspoken could be more the person they care for. upsetting in the long run.
Advanced MS - a carers handbook 153 And what if something happens reassuring to know things will to you? Many carers worry about happen the way you both want. what would happen if their own health fails, or if they’re not There’s a special law (the Mental around any longer to be a carer. Capacity Act) that decides when a person is no longer able to make You might worry much less once important decisions for themselves. you have plans for a crisis in Examples could be to do with place - or plans for when the end money or medical treatment. finally comes. If there’s any doubt a person can no Getting this sorted out way in longer make these decisions, they’re advance means both of you have given an assessment to judge this. plenty of time to think things over. You have enough time to involve Here we look at important legal the rest of the family, too. documents you should know about. Decisions about care and It can take a lot of worry off the treatment should involve you, shoulders of you both once you others in the family, health and know wishes have been written social care staff and, of course, the down in a legal document. It’s person you care for. Lasting Power of Attorney England and Wales (LPA) Find out more, including In England and Wales this is when downloading the forms, at the person with MS chooses gov.uk/government/ someone to look after their health organisations/office-of-the- and welfare, and make decisions public-guardian when they no longer can. Scotland An LPA can cover medical treatment a person does or There are three different kinds of doesn’t want to have, but also Power of Attorney. how and where they’re cared •• a Continuing Power of Attorney for. Without one (or an Advance looks after money matters Decision) a doctor will make these decisions in the best interests of •• a Welfare Power of Attorney looks the patient. after health and personal welfare
One LPA is needed to cover health •• a Combined Power of Attorney and care (a Health and Welfare looks after both money LPA). A different one covers matters and welfare. Find money matters (a Finance and out more at publicguardian- Property LPA). scotland.gov.uk Northern Ireland The finance LPA used to be called an Enduring Power of Attorney. If If you’re in Northern Ireland, you you still have one of those, it’s valid can make an Enduring Power of (but it won’t cover health and care). Attorney. Find details at nidirect.gov.uk/ An LPA might never be needed articles/managing-your-affairs- but it’s good to have in place. and-enduring-power-attorney There are slightly different versions for each part of the UK. It needs to be registered before it comes into force. Advanced MS - a carers handbook 155 156 Advanced MS - a carers handbook An Advance Decision The Advance Decision is legally The full name of this is an ‘advance binding in England and Wales. In decision to refuse treatment’. In Scotland and Northern Ireland it’s Scotland it’s called an ‘advance not, but should be taken notice of directive’. You sometimes hear it by medical staff. called a Living Will. Without an Advance Decision This allows the person you care the doctor will ask what you and for to say in advance that they the family think. But at the end of don’t want certain treatments in the day the doctor has to, by law, specific circumstances. It’s only do what they think is best for the used if the person can no longer patient, unless the patient made make a decision or communicate one of these documents. what they want to happen. Compassion in Dying has free forms that meet all the criteria to The kind of treatments it can cover: make an Advance Decision legally •• artificial feeding (through a tube) binding. compassionindying.org. uk/choose-a-way-to-make-an- •• artificial ventilation (when advance-decision-living-will/ breathing is taken over by a machine, also known as being An Advance Statement on ‘life support’) An Advance Statement can be •• CPR (when someone’s heart made if you live in England or is restarted by repeatedly Wales. It’s sometimes called a pressing on their chest and Statement of Wishes. It’s about giving the ‘kiss of life’) what a person wants and what’s •• antibiotics important to them.
An Advance Decision can’t ask for It covers things not covered by euthanasia or assisted suicide. a Lasting Power of Attorney or These are against the law. an Advance Decision, like food, religious wishes or daily routines.
Advanced MS - a carers handbook 157 It’s not legally binding. But if the It should mention if a person person can no longer make their also has an Advance Decision, own decisions, the people looking Advance Statement or Lasting after their care must take into Power of Attorney. account what’s in the document. Read more about it in the It can be written, recorded or told Compassion in Dying booklet verbally to family and carers. ‘Planning Ahead’. Having it written or recorded is a better way to make sure it’s taken Court Appointed Deputies notice of. If the person you care for never made a Lasting Power of Attorney Tip: and can no longer make decisions, you can apply to the Court of •• Compassion in Dying has a Protection to be made a Deputy. factsheet explaining more about the difference between Being a Deputy lets you legally Advance Decision and make decisions in their best Advance Statements and interests about some parts of whether someone needs both their care (the court decides which these are). •• to find it put ‘advance statement’ in the search This costs £400, with many more box on their homepage at costs after that. It comes with compassionindying.org.uk much stricter regulation than An Advance Care Plan with a Power of Attorney. This includes the need to provide exact This is only made with a person’s accounts and an annual report. healthcare team near the end of their life. It covers their care and Read more in the Compassion in treatment wishes and should be Dying booklet ‘Planning Ahead’ or at attached to their medical notes. gov.uk/become-deputy
158 Advanced MS - a carers handbook In Scotland if a person is no longer able to look after their own affairs, an intervention or guardianship order can be applied for. The Sheriff will decide on the period of the order. More information is available from the Office of Public Guardian Scotland website. publicguardian-scotland.gov.uk
Wills Tips: If someone dies without leaving •• get a solicitor involved so that a will, it can cause problems (and any document you draw up is expensive legal battles) for those clear and legally sound left behind. It’s a good idea to have a will made with advice from •• check if a local solicitor will a solicitor. write the will for free if you donate to a charity. Visit The person writing the will can willaid.org.uk (in Scotland make it clear who they want to be willreliefscotland.co.uk) to find the ‘executor’. That’s the person solicitors who will do this who oversees who gets what when they die. The executor also makes •• look at these documents again sure funeral wishes are followed. from time to time. Make sure they still reflect what the person If there’s no will, the state decides you care for wants to happen what happens. This might not be what the dead person wanted. •• let your GP know what plans you’ve made for you and the For example, without a will, person you care for. Make sure unmarried partners don’t medical records include these automatically inherit and it can lead to costly legal fees to make a claim. •• make copies for any people that give you social care services. Have them available for when you go to hospital with the person with MS Advanced MS - a carers handbook 159 End of life It’s especially important that legal It can be upsetting just thinking documents and the person’s about planning for the last stage wishes are finalised while they can of life of the person you care for. still make decisions. Maybe you worry that bringing If they no longer can, it’s vital you this up will upset them too. put in place the legal safeguards Some people with MS want to mentioned earlier in this chapter. face the fact that the end is getting This is especially true about the nearer. They may want to talk care and treatment the person about their death. gets near the end.
They might have wishes about It can be written, recorded or told where they want to be cared verbally to family and carers. for during those final days (for Having it written or recorded is a example, in a hospice or to get better way to make sure it’s taken hospice care at home). notice of.
If they do want to talk about the After a death end of their life, this should be On average people with MS die respected by you, the family and about seven years sooner than their doctor and other health care other people. This gap has been staff - no matter how upsetting getting shorter as medical care you might find it. gets better.
You might feel that talking about They may, of course, outlive you. this last stage means you’ve given But the expectation is that one up all hope. day it’ll be you who takes care of their funeral. But it’s possible to recognise the end is coming and make plans When someone dies people are for it, and still hold on to the hope often surprised by the number of that you both can have quality things that need doing. At this very time together.
160 Advanced MS - a carers handbook difficult time it can help to know You’ll need to register the death what you’ll have to do. with the Registrar of Births, Marriages and Deaths for the If someone dies in hospital, their district that the death happened body is stored in the hospital in (in Scotland any Registrar can mortuary. A member of staff will do this). This must be done within let you know they’ve died. It’s for five days (eight in Scotland). you to arrange to have the body collected. A funeral director can The registrar will give you a place the body in a chapel of rest Certificate for Burial or Cremation until the funeral. (in Scotland, a Certificate of Registration of Death). The funeral If someone dies at home, and director needs this before the their death was expected, contact funeral can happen. their GP who’ll write out a death certificate. If they die during the You’ll also be given a Certificate of night, you can call the out-of- Death (in Scotland, a form 334/S1) hours GP service. for social security purposes. If this applies, you fill this in and hand it It’s not unusual for a doctor to wait to your Jobcentre, Jobcentre Plus until the morning before coming. or social security office. A district nurse might also certify the death during the night.
Donating parts of the body The person you care for might want to help research into MS. One way they can do this is by giving their brain and spinal cord when they die to the Tissue Bank run by the MS Society and Parkinson’s UK. If interested in doing this, contact them on 020 7594 9734 or visit ukmstissuebank.imperial.ac.uk
Advanced MS - a carers handbook 161 You might need a Death Certificate might qualify for help from the for the will or any pension claims, Social Fund if you’re income is low insurance policies, savings bank enough. Find out more from gov. certificates and premium bonds. uk/funeral-payments The registrar can give you a Death Certificate for a fee. If this Funeral Payment doesn’t cover the full cost, you might be The funeral able to apply for a Budgeting Loan The person you cared for may (see page 140) have left instructions in their will You might be able to use the about how they wanted their savings of the person who’s died funeral, so check this. to pay funeral costs but you’ll The person who arranges the need a Death Certificate. funeral will have to pay for it. Find If they had life insurance, you out where the money’s coming usually don’t get any money until from and if it’s enough. after the estate has been settled. If you use a funeral director, You might be able to get a limited the average cost is now around amount before then to help pay £3,500 to £4,500 (almost £6,000 for it. Some pensions include a in London). sum that pays towards a funeral. Burials are more expensive than Funeral directors’ charges vary, cremations. Even the cheapest so compare a few. Most people option (‘direct cremation’) costs use a funeral director but if you at least £1,000. These prices don’t, contact the local council’s don’t cover catering or legal fees Cemeteries and Crematorium connected to dealing with the will. Department for advice. If there wasn’t a pre-payment If there’s going to be a religious plan to cover these costs, and you ceremony, get in touch with the don’t have the money, you appropriate person. The funeral
162 Advanced MS - a carers handbook director can help if you’re not sure of the person you loved and cared for. who to ask. They’ll also advise you about the process behind a It might not be easy knowing how cremation or burial. to fill the time (and silence) you find yourself with. Life after caring The responsibilities that may have Your role as a carer can end hung heavy on your shoulders in several ways. Perhaps the have gone. Instead of relief, you person you care for moves into might feel overwhelmed by it. And residential care, or a hospice. Or if you’re grieving after a death, your relationship may end, or they you’ll need to allow time for that. may die.
No matter how caring ends, You might want advice with you’re likely to feel the immediate things like: loss of your caring role. All the •• bereavement and coping with time and effort you had put into being on your own caring for so many years has suddenly ended. This will be a •• money matters, especially if major change in your life. benefits stop • getting back into the world of Look to family and friends for • work or retraining support with dealing with this change and for help with things Don’t forget, skills you’ve used that need doing straight away, like while being a carer can impress stopping care packages. employers.
You might then feel out on a limb, You’ve had lots of experience ‘redundant’ and no longer with organising and managing a role for yourself. This role may budgets, schedules and dealing have defined you for years. with care and medical staff. It can be tricky to cope with this sudden change, let alone the loss
Advanced MS - a carers handbook 163 Carers UK have web pages about Tips: life after caring and going back to work. •• talk things over with someone at the MS Helpline. They’re trained They cover: to give emotional support •• the effect that going back to •• Cruse Bereavement Care work can have on any benefits (cruse.org.uk) offers face-to- you’ve been getting face, telephone, email and website support. Call their • how to identify your skills • helpline on 0808 808 1677. •• and where to get help with See page 174 for more on this training. and the service for Scotland •• Work Preparation Support Check out carersuk.org/help-and- offers advice and training advice/practical-support/when- for carers and ex-carers. It’s caring-ends/life-after-caring available through your local Find ideas for getting back to Jobcentre Plus office or by work here carersuk.org/help-and- calling on 0845 6060 234 advice/work-and-career/getting- •• your local carers group or back-into-employment centre will help with training and getting into work We have a factsheet on bereavement that you can •• the MS Society can give grants download from our website. Put to former carers so they can ‘bereavement’ in the search box learn a new skill that could of our home page. help them get back into work
164 Advanced MS - a carers handbook Useful organisations
Support nurse is. Put ‘MS services near me’ Forums, blogs and discussion in the search box on their website: boards for people with MS or their mstrust.org.uk families, partners, friends or carers: Carers Trust MS Society Information, advice and support Visit mssociety.org.uk/ms- through its carers centres, website support/for-carers for lots of and online forum. Also, has grants information covering help and for carers. support, money, work, looking Carers Trust has local Network after yourself and end of life issues. Partners. These are 150 Chat to other carers on our forum: independent services for community.mssociety.org.uk/forum carers across the UK. They offer information, advice, practical MS Helpline – get information or support and/or care in the home. emotional support at every stage Find your nearest one on their of MS (see back cover for details) website - search for ‘carers’ plus the name of the town or county Grants – call 0300 500 8084, you live in. email [email protected] or visit mssociety.org.uk/grants 0300 772 9600 carers.org Shift MS A social network for people with Carers UK MS. Popular with younger people: The UK’s national membership shift.ms charity for carers. Information, advice and telephone and email MS Trust support for unpaid carers (family Useful information about MS, or friends) from their advice line. including where the nearest MS
Advanced MS - a carers handbook 165 Advice Line 0808 808 7777 Scotland (Monday to Friday 10am-4pm) Care Information Scotland Check out their online forum at Provides information and advice carersuk.org/forum for carers and those they care for. carersuk.org - choose from the Helpline and web chat available. separate versions of their site for 0800 011 3200 (Mon-Fri 8am to Wales, Scotland, Northern Ireland 10pm, Sat-Sun 9am to 5pm) and England. careinfoscotland.com To find local groups check out carersuk.org/help-and-advice/ Crossroads Caring Scotland get-support/local-support One of Scotland’s leading providers of packages of support services for England carers and their families so they Carers Direct Helpline can live independently at home. 0300 123 1053 9am-8pm Mon- Local contact information on the Fri, 11am-4pm weekends. Closed website. on bank holidays. Has webchat crossroads-scotland.co.uk and email enquiry services. Northern Ireland England-only information service Crossroads Care Northern to help you get the support needed Ireland by you and the person you care for. Covers assessments, benefits, A not-for-profit organisation that direct payments and individual supports carers and those with budgets. Advises on taking time care needs. off and staying in - or going back 028 9181 4455 to or leaving - work or education. Email [email protected] Also help with complaints about crossroadscare.co.uk NHS and care services. Wales nhs.uk/Conditions/social-care- and-support-guide/Pages/ ‘My MS, My Rights, My Choices’ carers-direct-helpline.aspx Project Big Lottery funded project that 166 Advanced MS - a carers handbook provides information, advice and with online directory of registered advocacy services across Wales for independent care services. people with MS and their carers. 03000 616161 0808 800 8000 cqc.org.uk Email: mymscymru@mssociety. org.uk Local government and social care ombudsman Urgent medical advice For help with complaints if you’re not happy with the response from NHS 111 the service you complained to Worried about something 0300 061 0614 medical? Need advice or medical treatment quickly and can’t wait lgo.org.uk/adult-social-care for an appointment to see a lgo.org.uk/make-a-complaint doctor or nurse? POHWER If it’s urgent (but not an Helps people have a voice by emergency), call 111 (24 hours a providing advocacy services. Helps day) and speak to a fully trained with complaints about the NHS NHS adviser. They can decide (England only). Find details about if you need an ambulance and complaining about the NHS at: send one straight away if needed. pohwer.net/nhs-complaints- They can contact an out-of- advocacy-resources hours doctor, too. 0300 456 2370 If it’s an emergency (someone’s life is at risk), call 999. Wales
Care services regulators The Care and Social Services and complaints Inspectorate Wales England Responsible for inspecting social care and social services. It has an The Care Quality Commission online directory of registered care The health and social care regulator, services
Advanced MS - a carers handbook 167 0300 7900 126 help only when a complaint to cssiw.org.uk an organisation that provides a service hasn’t been sorted out. Public Services Ombudsman 0800 377 7330 for Wales spso.org.uk Independent body with legal powers to look into complaints Northern Ireland about public services (including social care) and independent care The Regulation and Quality providers. Improvement Authority (RQIA) 0300 790 0203 The independent health and social care regulator, with online directory [email protected] of registered care services. ombudsman-wales.org.uk 028 9051 7500 Scotland Email: [email protected] The Care Inspectorate rqia.org.uk Regulates and inspects care Office of the Northern Ireland services. It has an online directory Ombudsman of registered care services. Offers help only when you’ve 0345 600 9527 exhausted an organisation’s own [email protected] complaints procedure. careinspectorate.com 0800 34 34 24 [email protected] Scottish Public Services Ombudsman (SPSO) nipso.org.uk The final place to take complaints Bladder and bowel problems about councils, the NHS, the Scottish Government and its Bladder and Bowel agencies and departments and This organisation has details of most Scottish authorities. Offers continence services across the UK and continence advisers on their
168 Advanced MS - a carers handbook helpline on 0800 031 5412 Disabled Living Foundation bladderandbowel.org Charity providing impartial advice, information and training on Bladder and Bowel UK equipment and mobility products Information and an online forum for disabled people to talk over symptoms Helpline 0300 999 0004 bladderandboweluk.co.uk (Mon-Fri, 10am-4pm) Equipment and technology dlf.org.uk
Abilitynet The DLF also run the website livingmadeeasy.org.uk. It shows Helps people with any disability you a large range of equipment, to use technology at home, work from clothing and personal care, and in education. They run a to mobility products and things free helpline on 0800 269 545 for the home, including alarms and offer specialist advice and and other technology. information abilitynet.org.uk Continuing Healthcare (CHC) For more information visit nhs. Everyone Can uk and search for ‘continuing Supports disabled people with healthcare’. technology Also find information at Helpline 0808 800 0009 ukcareguide.co.uk/chc-funding everyonecan.org.uk Care to be Different has advice Disabled Living and tips on getting CHC. Check Information and advice about out their website and publications products, equipment and services caretobedifferent.co.uk for disabled adults, carers and the professionals who support them. If you’re turned down for CHC, find advice on appealing at disabledliving.co.uk caretobedifferent.co.uk/nhs- continuing-healthcare-appeals/ Advanced MS - a carers handbook 169 Beacon relateni.org (Northern Ireland) In England the Beacon 028 9032 3454 organisation offers free advice The MS Society in Northern and information to help guide Ireland has a counselling service. people through applying for CHC. Contact 028 9080 2802 for details. For a fee they can take on Relationships Scotland someone’s case (and be their advocate) or help with appeals. Similar service to Relate for They have a free toolkit you can people in Scotland. ask for or download to help you 0845 119 2020 understand the CHC system. relationships-scotland.org.uk 0345 548 0300 College of Sexual and beaconchc.co.uk Relationship Therapists Counselling (relationships Has a list of therapists. and sex) 020 8543 2707 British Association for Email: [email protected] Counselling and Psychotherapy cosrt.org.uk Details of counsellors can be found on their website: Pink Therapy bacp.co.uk/search/Therapists Therapy organisation that has a directory of counsellors and Relate therapists that work with lesbian, Offers advice, relationship gay, bisexual and trans people. counselling, family counselling pinktherapy.mobi/ and support face to face, by phone or through its website. Sexual Advice Association relate.org.uk (England and Wales) Charity that helps improve the 0300 100 1234 sexual health and wellbeing of
170 Advanced MS - a carers handbook men and women with information but has a helpline for questions on and a helpline. personal budgets. Helpline: 0207 486 7262 info@ Personal Budgets helpline: sexualadviceassociation.co.uk 0300 555 1525 sexualadviceassociation.co.uk (Tue and Thurs 9.30am–1.30pm) Sex and Disability Helpline Email: personalbudgets@ 07770 884 985 (11am to 7pm disabilityrightsuk.org weekdays) or email sexdis@ It can help with questions about: outsiders.org.uk • personal budgets More information at outsiders. • care needs assessments org.uk/outsidersclub/helpline • care and support plans Money and benefits • hiring personal assistants • getting funding for social care Carer’s Allowance Unit • appealing against decisions 0345 608 4321 made by your council’s social Carer’s Allowance Unit in services Northern Ireland General enquiries: 020 7250 8181 0300 123 3356 disabilityrightsuk.org
Disability Rights UK Turn2us Information on benefits such as Charity that helps people find out the Disability Rights Handbook what benefits and grants they and free factsheets are available qualify for. from its website. It campaigns It has useful tools and resources for improvements to the social to help you understand what your security system. It can’t answer options are. general questions over the phone turn2us.org.uk
Advanced MS - a carers handbook 171 Rights and legal help discrimination, services, community care and welfare benefits. Citizens Advice 0207 791 9800 Help with welfare rights, housing and disability advice. To find [email protected] local offices, as well as find Find more information (and how online advice, contact through to get legal advice in Scotland and citizensadvice.org.uk Northern Ireland) at mssociety. Northern Ireland has the org.uk/care-and-support/ Independent Welfare Changes financial-help/legal-advice Helpline: Freephone 0808 802 Disability Rights UK 0020 (Mon-Fri 9am to 5pm). It’s Campaigns for improvements to provided by the local Citizens the social security system (see its Advice, Law Centre and Advice entry on page 171 for more details) Northern Ireland.
Disability Law Service (DLS) Disability Information Scotland Provides information to help Free legal advice to people with guide people through the maze of disabilities and their carers in disability information in Scotland. England and Wales. Their work covers discrimination and issues Helpline 0300 323 9961 with care services, including social disability.scot.org.uk care assessments. 0207 791 9800 Travel [email protected] Bus dls.org.uk Free off-peak travel on all local buses anywhere in England is The MS Society helps fund an MS available to disabled people who Legal officer at the DLS to give qualify for it. Similar schemes run MS-specific advice to people in in Wales. Application forms are England and Wales. They can help available from local councils. with legal issues to do with work,
172 Advanced MS - a carers handbook In Scotland you can get application [email protected] forms for the National Entitlement ridc.org.uk card from local councils. Visit transport.gov.scot and put Motability ‘concessionary travel’ in the search A scheme that lets disabled box for more information. Or call the people get mobile by exchanging ‘Concessionary travel and integrated their mobility allowance for a ticketing unit’ at Transport for lease on a new car, scooter or Scotland on 0141 272 7170. powered wheelchair. For concessions in Northern Ireland, motability.co.uk call Translink on 028 9066 6630. Work Train Access to Work A Disabled Person’s Railcard can Help for people with MS to get a job give a third off the cost of most UK or stay in work. Applications can be train journeys for the person with made directly to the Access to Work MS and their carer. Centre or through local job centres. 0345 605 0525 gov.uk/access-to-work/overview Email [email protected] 0345 268 8489 disabledpersons-railcard.co.uk Email: [email protected]. gov.uk Research Institute for Disabled Consumers Dying and Bereavement RiDC (before 2018 called Rica) has Cruse Bereavement Care information, guides and reviews about products and technology Face-to-face, email and that help disabled people lead telephone support for people independent lives. Their information after the death of someone close. covers driving, public transport, Covers UK, except Scotland. wheelchairs and walking aids. Helpline 0808 808 1677 Monday- Friday 9.30-5pm (not bank 020 7427 2460
Advanced MS - a carers handbook 173 holidays), open until 8pm on Dying Matters Tuesdays, Wednesdays and A coalition of 32,000 members Thursdays. across England and Wales which cruse.org.uk aims to help people talk more openly about dying, death and Cruse Scotland bereavement, and to make plans Helpline 0845 600 2227 for the end of life. Mon 10am-8pm Mondays dyingmatters.org to Wednesdays, 10am-9pm Thursdays, 10am-4pm Fridays crusescotland.org.uk
Compassion in Dying Help with decisions about healthcare, rights and planning in advance, including drawing up an Advance Decision. Their booklet ‘Planning Ahead’ explains the different legal documents we mention in pages 155-159. End-of-life Rights Information Line 0800 999 2434 Call if you have questions about end-of-life rights or care, Advance Decisions or Lasting Powers of Attorney. Email info@ compassionindying. org.uk compassionindying.org.uk
174 Advanced MS - a carers handbook New words explained adaptations – changes in the home can cover a day centre to give you that make life easier, from structural or the person you care for a break alterations to gadgets and changes and let them socialise. It could to furniture and fittings include going into a care home advocate – independent person care plan (or care and support to help with care and support plan) – when a person with plans, assessments and making MS has an assessment of their complaints support needs by their local council (or trust in Northern assets (or ‘capital’) - this includes Ireland). It puts in writing what savings, income (from pensions or services they need renting out property) and the value of the home catheter – thin tube that takes urine (wee) from the bladder and assistive technology – products, into a bag via the urethra (the equipment, and systems that help body’s ‘pipe’ that takes urine from with learning, working, and daily the bladder to outside the body). living for people with disabilities A suprapubic catheter is more broker – someone who gives advice, comfortable and less likely to support with care plans and tries to cause infections. The tube goes solve problems with services. This into the bladder through a cut a service is free for people getting few inches below the belly button funding from their local authority, but CBT – cognitive behavioural self-funders must pay to use a broker therapy is a technique you care package – a mix of services can learn from a counsellor that can include help with things like that helps you manage your cleaning and shopping, equipment problems by changing the way and adaptations to your home, you think and behave. It can personal care and cooking. The service reduce anxiety, negative thinking and depression
Advanced MS - a carers handbook 175 commode – a chair, often on Health and Social Care Trust wheels, that has built into it a (HSCT) – the local body that chamber pot that you can use provides social care services in when you need to go to the toilet Northern Ireland (in other parts of the UK councils provide these) continence/incontinence – when you can/can’t control your bladder MDT (multi-disciplinary team) – a or bowel and you can/can’t hold collection of staff, each experts in on when you need the toilet different types of medicine or the care of people with MS deferred payment agreement – if someone needs to move into a means-tested – you only get a residential care home, they can put welfare benefit that’s ‘means- off paying for it until their house is tested’ if you can show that the sold (after they die, for example) money you have coming in from wages, savings, and so on, is direct payments – a way of using below a certain level the money a council (or HSCT) gives someone with MS to pay for their mindfulness – a type of social care. They can only be spent meditation where you train on social care services and things yourself to focus on the present, that meet the needs in their care plan your breathing and how you’re feeling. You become more aware equity release - a way people who of your body, thoughts and are 55 or older can get cash out feelings. It lets you manage your of their home without needing emotions. Studies show it helps to move. They take out a loan with stress, anxiety and depression secured on their home. It’s paid back when the property is sold myelin – a fatty covering around nerves that protects them. In MS functional electrical stimulation this gets damaged, causing MS (FES) – when small electrical symptoms and disability signals from a small box attached to your leg help you walk better if NICE (National Institute for Health you have the MS symptom called and Care Excellence) – NICE is part ‘foot drop’ of the Department of Health. it draws up guidelines for England 176 Advanced MS - a carers handbook and Wales on which drugs can be specialist care is provided (from available on the NHS and how to a few hours a day or week, to treat conditions like MS longer holidays) occupational therapist (OT) sepsis – blood poisoning caused – helps people do everyday when an infection (such as in the things by offering suggestions bladder or urinary tract) gets into and equipment. They advise on the bloodstream. Symptoms disability equipment, alterations include fever or low body to the home or workplace that temperature, chills and shivering, make life easier and help with fast heartbeat or breathing. Must fatigue, balance and tremor. be treated quickly with antibiotics, to stop organ failure and death open appointment – when you aren’t given a date but have a sitting service – when someone is specific period (say, six months) to paid to spend time with a person book an appointment in, without so that their carer gets a few hours’ needing to be referred by a GP break. They can’t give medical or personal care. Run by local health personal budget – the money set authorities, or private companies out in the care and support plan of a person with MS that their council social care – support and care (or HSCT) will spend on meeting services that the local council (or their social care needs. This budget HSCT in Northern Ireland) arranges. can be managed by their carer Includes help at home with personal care, care homes, day centres, personal care – help with things breaks for carers and advice. like getting up, washed or dressed, eating and going to the toilet support plan – when the carer of a person with MS has an assessment reablement – help lasting up to of their support needs by the local six weeks after coming home council (or HSCT). It puts in writing from hospital. It helps you get what services they need back your independence. to transfer – to move from one respite care – a break for a person place to another, such as from bed with MS or their family carer where to wheelchair Advanced MS - a carers handbook 177 Further information
Resources MS Helpline Our award winning information The freephone MS Helpline offers resources cover every aspect of confidential emotional support living with MS. and information for anyone affected by MS, including family, To order them email friends and carers. [email protected] or visit mssociety.org.uk/publications Information is available in over 150 languages through an interpreter service.
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About this resource
With thanks to all the liability for any errors or people affected by MS and omissions. Seek advice from professionals who contributed the sources listed. to this booklet, including Wendy Wilson, Nicole References Kirbyshire (Parkinsons’s UK) A list of references is available and especially Mark Brightburn. on request. Call 0300 500 8084. If you have any comments on this information, please Photography send them to: resources@ All photography: Amit Lennon, mssociety.org.uk except Simon Rawles (pages 17, 65, 126 and 154), Paul Moane Disclaimer: We have made (pages 25 and 148), Davie every effort to ensure that the Dunne (p 140) and Ginny Lattul information in this publication (p30). is correct. We do not accept
This resource is also available in large print.
Call 0300 500 8084 or email shop@ mssociety.org.uk Contact us MS Helpline Freephone 0808 800 8000 (closed on weekends and bank holidays) [email protected] MS National Centre 0300 500 8084 [email protected] [email protected]
Online mssociety.org.uk facebook.com/MSSociety twitter.com/mssocietyuk
MS Society Scotland 0131 335 4050 [email protected]
MS Society Northern Ireland 028 9080 2802 [email protected]
MS Society Cymru 0300 500 8084 [email protected]
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© MS Society. August 2018 This title will be reviewed within three years of publication.
Multiple Sclerosis Society. Registered charity nos 1139257/SC041990. Registered as a limited company in England and Wales 07451571. Carer’s assessment checklist
Let’s stop MS together Getting ready for my assessment Yes, I do this for the I do this for them every Each time I do this for If you have a carer’s assessment, it’s important to be prepared for it. person with MS I’m day/every week/every them it takes me ... Here’s a checklist of things to think about. Fill this in for a week or so supporting month (say which). (say how long) before your assessment. It could help you be clearer about the help you Don’t forget to include need. Have it with you during your assessment to jog your memory. if you do this during the night
Day-to-day help Cleaning the house Shopping Cooking meals Washing clothes Helping them wash or have a bath Helping them go to the toilet Helping them feed themselves Helping them take their medicines Helping with other medical care Helping them use specialist equipment Arranging appointments for them Making sure they follow therapy routines (like physio exercises) Helping with paperwork (mail, money, paying bills) Getting them from A to B (help with walking, driving them, pushing their wheelchair) Giving them emotional support Helping them express what they want to say Emergency care (you’re available by phone, or you have a house key)
2 Carer’s assessment checklist Yes, I do this for the I do this for them every Each time I do this for person with MS I’m day/every week/every them it takes me ... supporting month (say which). (say how long) Don’t forget to include if you do this during the night
Day-to-day help Cleaning the house Shopping Cooking meals Washing clothes Helping them wash or have a bath Helping them go to the toilet Helping them feed themselves Helping them take their medicines Helping with other medical care Helping them use specialist equipment Arranging appointments for them Making sure they follow therapy routines (like physio exercises) Helping with paperwork (mail, money, paying bills) Getting them from A to B (help with walking, driving them, pushing their wheelchair) Giving them emotional support Helping them express what they want to say Emergency care (you’re available by phone, or you have a house key)
Carer’s assessment checklist 3 Yes No Your health and mental well-being Do you have any health problems of your own? Is caring for someone making these worse? Do you feel anxious, stressed or depressed? Do you get backaches or headaches? Does your GP know you’re a carer? Do you have to move or lift the person you care for? Would you like any aids or adaptations to help you like a raised chair, bed, or hoist? Do you get enough sleep? Do you sometimes get a break from caring? Do you eat healthily? Do you get enough exercise? Can you leave the person you care for alone in the house? Can you look after your own day to day needs? Are you getting support from other people? Would you like to have any telecare equipment to help you like a pendant alarm, flood detector, bed occupancy sensor or door exit sensor?
Very difficult Fairly difficult No problem How easy is it for you to get to appointments for yourself (GP/dentist/hospital/optician)?
4 Carer’s assessment checklist Yes No Your health and mental well-being Do you have any health problems of your own? Is caring for someone making these worse? Do you feel anxious, stressed or depressed? Do you get backaches or headaches? Does your GP know you’re a carer? Do you have to move or lift the person you care for? Would you like any aids or adaptations to help you like a raised chair, bed, or hoist? Do you get enough sleep? Do you sometimes get a break from caring? Do you eat healthily? Do you get enough exercise? Can you leave the person you care for alone in the house? Can you look after your own day to day needs? Are you getting support from other people? Would you like to have any telecare equipment to help you like a pendant alarm, flood detector, bed occupancy sensor or door exit sensor?
Very difficult Fairly difficult No problem How easy is it for you to get to appointments for yourself (GP/dentist/hospital/optician)?
Carer’s assessment checklist 5 Yes No Family responsibilities Do you have family commitments as well as your caring role? If you’re a parent, is caring making this role harder? Do you feel you have time for your children? Do you feel you have to ask your children to support you in your caring role? Support and leisure Does the person you care for have home care, or go to a day centre or lunch club? Does another family member or friend sometimes provide care? Do you get breaks where you have time for yourself, your leisure interests or time with friends? Or is caring getting in the way? Work, education and training Are you struggling to be a carer and hold down your job? Have you had to cut down how many hours you work? Would you like to go back to paid work? Is caring stopping you from doing any training or further education? Money Is being a carer giving you money problems? Would you like advice on benefits or debt? Risks Does the person you care for sometimes show challenging behaviour? Do you feel your housing and living conditions are suitable? Culture and religion Do you want to go to a place of worship or other regular religious and cultural activities? Do you have any specific religious or cultural needs?
6 Carer’s assessment checklist Yes No Family responsibilities Do you have family commitments as well as your caring role? If you’re a parent, is caring making this role harder? Do you feel you have time for your children? Do you feel you have to ask your children to support you in your caring role? Support and leisure Does the person you care for have home care, or go to a day centre or lunch club? Does another family member or friend sometimes provide care? Do you get breaks where you have time for yourself, your leisure interests or time with friends? Or is caring getting in the way? Work, education and training Are you struggling to be a carer and hold down your job? Have you had to cut down how many hours you work? Would you like to go back to paid work? Is caring stopping you from doing any training or further education? Money Is being a carer giving you money problems? Would you like advice on benefits or debt? Risks Does the person you care for sometimes show challenging behaviour? Do you feel your housing and living conditions are suitable? Culture and religion Do you want to go to a place of worship or other regular religious and cultural activities? Do you have any specific religious or cultural needs?
Carer’s assessment checklist 7 Yes No Emergency planning Do you need help planning what happens if either of you suddenly become ill or have an emergency? Your views on caring Do you feel you don’t have a choice about providing care? Do you have particular concerns about the future for you and the person you care for?
For you what’s the hardest thing about caring?
You may feel that you can’t carry on at all, or only if you reduce the amount that you do. What would you most like to change about your situation?
Who or what helps you at the moment, and is this enough?
8 Carer’s assessment checklist Yes No Emergency planning Do you need help planning what happens if either of you suddenly become ill or have an emergency? Your views on caring Do you feel you don’t have a choice about providing care? Do you have particular concerns about the future for you and the person you care for?
For you what’s the hardest thing about caring?
You may feel that you can’t carry on at all, or only if you reduce the amount that you do. What would you most like to change about your situation?
Who or what helps you at the moment, and is this enough?
Carer’s assessment checklist 9 Information and advice How do you like to get information and advice? Such as leaflets, face to face, on the phone, on the internet, email, or in large print
Is there specific advice or information you need now?
Any other problems or worries you’d like to bring up?
10 Carer’s assessment checklist Information and advice How do you like to get information and advice? Such as leaflets, face to face, on the phone, on the internet, email, or in large print
Is there specific advice or information you need now?
Any other problems or worries you’d like to bring up?
Carer’s assessment checklist 11 Contact us MS Helpline Freephone 0808 800 8000 (closed on weekends and bank holidays) [email protected] MS National Centre 0300 500 8084 [email protected] [email protected]
Online mssociety.org.uk facebook.com/MSSociety twitter.com/mssocietyuk
MS Society Scotland 0131 335 4050 [email protected]
MS Society Northern Ireland 028 9080 2802 [email protected]
MS Society Cymru 0300 500 8084 [email protected]
© MS Society. August 2018 This title will be reviewed within three years of publication.
Multiple Sclerosis Society. Registered charity nos 1139257/SC041990. Registered as a limited company in England and Wales 07451571.