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Multiple Sclerosis: friends & family experiences

MS: contacts with health, social services and voluntary organisations

There is a range of support offered by different organisations, although people are not always aware what is available and how to access it. People talked to us about support both for the person with Multiple Sclerosis (MS) and for themselves, and about their needs for both practical help and advice as well as emotional support.

Support from health services

People came into contact with a variety of health care professionals, including GPs, specialist nurses and doctors, physiotherapists and others such as occupational therapists, speech and language therapists, dieticians, counsellors. They had mixed views about the quality of care received. Some people reported very positive experiences. All the services Louise and her husband used were local and she felt they worked well together. Kay Z had received a lot of help and been ‘signposted’ well to relevant services. A good relationship with the GP is helpful, and there were many positive comments about GP support. As Louise points out, it is not just the person with MS who benefits but also their family members:

 

Louise has a very good relationship with her GP, who gives continuing support to the whole family.

Louise has a very good relationship with her GP, who gives continuing support to the whole family.

Age at interview: 49
Sex: Female
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Can you say a bit more about what makes a good GP, for you?

Yep, I mean our GP has known the whole of our family for probably twenty years. So my daughter’s twenty now, yeah, so for since I was pregnant, but she, so she definitely knows us. She will spend a lot of time in appointments. I mean sometimes I’ve been and seen her and I’ve realised I’ve been there for forty minutes. I mean I don’t go often but when I do go I get my forty minutes, whereas it says very clearly, ten minutes maximum. 

So she’s great. She’ll talk. She comes, does home visits, which is, I think, quite rare these days, not often but if there’s been like a crisis, there have been crises over the years of, you know, falls, broken shoulder, you know, bladder issues. When there has been a crisis and I’ve phoned, I can phone her. I have phoned her sometimes in her surgery and she’s come round just to sort of check up on how things are here and to, actually, probably give him a bit of a talking to. So because he has always been quite resistant to say the drug trial, she encouraged him to take, to participate in that 

But I think she’s just good because she she’s aware of our whole family. She knows the children as well and also, you know, both the hospitals that we go to are nearby as well. So I suppose there’s a good link between them all and, yeah, and I think she’s quite open minded. She’s encouraged, there was some kind of, as I said, a drugs trial, she’d encouraged that and has certainly phoned up and arranged for physiotherapy and that kind of issue if required. 
Staying with the same GP for a long time could be helpful – though David said things had improved when new, younger GPs joined the practice and brought new skills. Robin also pointed out that as generalists GPs can’t always be as knowledgeable about MS as a specialist MS nurse.

Many people valued the availability, knowledge and communication skills of MS nurses, where available. Sarah thinks they are ‘lucky’ in their county to have such good services; but she notes that they are ‘a rich county’. The MS nurse sometimes helped people to get other key services, such as district nursing or physiotherapy.
 

Robin appreciates that the MS nurse understands his problems and ‘will look after the carer as much as the person who’s got MS’.

Robin appreciates that the MS nurse understands his problems and ‘will look after the carer as much as the person who’s got MS’.

Age at interview: 72
Sex: Male
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In fact one thing I think I’d say to anybody who’s looking after somebody with MS don’t rely on the doctors unless they’re specialists in MS. Your GP for instance may be the nicest man in the world but he’s probably only got three patients with MS so why should he know anything about MS. you need to go to somebody like an MS nurse if you’ve got one in your area, MS nurses are wonderful and specially trained.

Could you say anything more specific about the kinds of things the MS nurse does to help you?

The first thing the MS nurse does is just be there and you know you’re going to talk to somebody who understands what kind of problems you’ve got. And the MS nurse will look after the carer as much as the person who’s got MS because they realise perfectly well that without the carer everybody’s up the spout. the MS nurse will also liaise very closely with your GP and more or less tell the GP what kind of treatment she recommends and most GPs are humble enough to understand they don’t know very much about MS whereas the MS nurse does. And so if the MS nurse says you’ve got to have this sort of medicine or whatever you’ll get it prescribed for you.
 

Ray and his family know the local MS nurses well and are confident that they will be supported. He knows that it is not like this everywhere.

Ray and his family know the local MS nurses well and are confident that they will be supported. He knows that it is not like this everywhere.

Age at interview: 17
Sex: Female
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Ray: We know the nurses now. If we’ve got a situation or a problem we know we can ring them on their mobile. And we’ve got access to them. Not immediate access, it might take a couple of days for them to get back, but the thing is they’re there and that, we take strength from that as well.

But I wouldn’t say that that is typical all over this country. In fact, I would say far from it. From the people I’ve met, some haven’t even got MS nurses. In fact, we never actually had, we used to go to the local hospital here, we have to go 12 mile away to see a neurologist now because they never had one up here. He retired and he was never replaced. I believe now that someone has actually taken up the post. But for three years we’ve been travelling, we live almost next to a hospital for, for, for the reason that, that, that it was handy for us but we still have to travel now 15-20 mile to another hospital which I don’t like much really [laughs].
Others were less satisfied with the health services they received, either for their family member or for themselves. Ian felt that his wife ‘just didn’t seem to get very good service or advice’. Even though he thought the MS nurses were ‘good at what they do’, he felt that what they could do, because of the present state of knowledge about MS, wasn’t very helpful to a person living with MS. Stella found the MS nurse depressing and not very helpful when her partner was diagnosed. Kate thought that older people who are caring for a relative did not get enough attention from primary care services. Until she injured her back lifting her husband 5 years ago, Chez said she’d had no help, no ‘offer of care’.
 

Kate feels that there is not enough ‘backup from the medical profession’ for older carers who become ill themselves.

Kate feels that there is not enough ‘backup from the medical profession’ for older carers who become ill themselves.

Age at interview: 75
Sex: Female
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I have one or two gripes really about what goes on. He had a terrible fall off a wall here, let me think, three years ago, and it all came at a terribly bad time. I’d just been, I’d actually been diagnosed with breast cancer and I’d been out of hospital after losing half my breast for just over a day, and he fell off the wall. I now realise of course it was stress. He was worried about me. But I somehow did pick him up. And I thought he’d broken his neck because he’d fallen between two. And because I was ill myself I wasn’t really thinking straight, otherwise I’d have got an ambulance out. But I didn’t. So I managed to get him in to the house. And we had no co-operation off the doctors whatsoever. I was appalled actually. They just sent round some, well, I did actually phone them and say he’d had this fall and they said, “Oh, just let him go to bed” you see. 

And they didn’t seem to associate the fact that I was, they didn’t re-, I don’t think they ever read anybody’s notes actually, I’ve come to the conclusion, that I actually wasn’t supposed to be really doing much at all because I’d only just had quite a serious operation, and I was trying to look after him, sort myself out. And they sent some, some locum doctor round. He said, “Oh, I should just take a couple of paracetamol if I were you and you’ll be all right.” 

Now we, we have now discovered that that fall, he has just recovered from. And all through the time I was going for chemotherapy and radiotherapy we were, I was having to drive. I shouldn’t have been driving, but I couldn’t leave him behind because I can’t leave him in the house on his own. So it all became, and at the same time my sister wasn’t here who, she was away for quite a long time, so I’d got no one I could call on at all to help. 

And that’s where I think a lot of the systems fall down. There is no, my biggest worry is always being ill. And I think most carers have the same problem. Our biggest worry is what happens if we are ill. And there is no backup from the medical profession whatsoever for this. And I think there should, I actually think there should be. I think the medical profession are at great fault here, that they don’t realise that the person looking after that person can be ill and need some, some help. And I, and this is really a serious worry. I mean we’re old, we’re well into our 70s now, and it is becoming quite a serious worry. 
 

Emma changed GP when her husband was told to ‘go to Specsavers’ with his visual problems. The new GP referred him immediately to a neuro-ophthalmologist.

Emma changed GP when her husband was told to ‘go to Specsavers’ with his visual problems. The new GP referred him immediately to a neuro-ophthalmologist.

Age at interview: 37
Sex: Female
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Afterwards then, we went to the GP to explain and because he has to give the note, the out of work period, so eventually she give him a couple of she wanted to give him a month, because he was kind of OK-ish, we, we told her no, we take two weeks and if we need more we come back. 

But in those two weeks they started more flare ups. So in those two weeks originally it was started to feel like he lose the balance for kind of two weeks. He described it as being drunk. Then I, in the following two weeks he started to don’t see properly so there were a few problems with the visual stuff. At that point we went to the GP again, and that one, one of the more distressing things the, the GP, my husband went on his own and the GP said you know, “Why are you coming here for that? You should go to Specsavers”. Which is amazing. I mean, you know, we just, it was, it was like, “What are you talking about?” The next day we change GP straight away. I just, I found that horrible, knowing what he has. And even if you’re not an expert that is one of the first things you need to be aware, so, come on. 

So we changed GP, at that point, we went to another GP. Which one friend of ours, of ours used to go to and he said he was pretty ‘normal’. We went there, we told what happened. Immediately he sent it to the neuro-ophthalmologist.
Neurologists typically see people with MS infrequently, and were sometimes seen by relatives as not making much contribution. This might be because the specialist had limited time or there was little in the way of treatment he or she could offer. But some people really appreciated the skills of the specialist doctor. Sarah described the last neurologist her mum saw as ‘brilliant’. Compared to MS nurses carers sometimes felt specialists were perhaps more focused on clinical details and less on the whole person. Stella said the neurologist was ‘very friendly’ and made an effort to see them quickly. But ‘he didn’t have very good people skills… It’s the kind of academic approach to medicine and ….you could just feel that he felt very, very remote from us. That he didn’t feel any closeness to us. Or - he wasn’t really talking down to us, but at the same time you could feel this inner distance. That he was talking as if he was talking to aliens rather than a human being to a human being and that was a bit sad.’
 

Ann and her daughter have been much happier since they moved her appointments to a local specialist hospital. Ann thinks the neurologist there is ‘just great.’

Ann and her daughter have been much happier since they moved her appointments to a local specialist hospital. Ann thinks the neurologist there is ‘just great.’

Age at interview: 55
Sex: Female
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At the local hospital when we were focusing on her eye we weren’t particularly happy so I asked that all the appointments were moved to the specialist local hospital and since we’ve gone there [name]’s been much happier, my daughter’s been much happier and I’ve been much happier with the consultants that when we’ve seen them and they have a specialism around MS. the last consultant we saw was just great, the way he spoke to her and interacted with her was just so good and he made her feel that she wasn’t wasting his time because she, she, you know, she won’t be the most severe patient that they see, but he really, really helped her to see that, you know, you keep it here and you’re doing really well and that’s what I want to see I don’t want to see you coming back here because you’ve had another episode I just want you to come back and say how are you doing, how’s things been. And for a consultant to sort of talk to a 22 year old like that really made her feel an equal whereas maybe one or two of the other consultants had almost been treating her as a child that didn’t go down very well because then she starts acting like a child.
Regular physiotherapy can be important for people with MS and several people talked about how helpful physiotherapy had been to their relative. But it wasn’t always available on the NHS, or was time-limited, and physiotherapists with specialist knowledge of MS could be hard to find. Karl and his partner found a specialist NHS physiotherapist on the internet. Morris and Norma both paid for their relative’s physiotherapy sessions. Ray pointed out that the physiotherapy exercise class also offered valuable social contact.

Sometimes the emotional pressures of caring for a relative or friend with MS led people to seek counselling. Alice had found counselling helpful, but she felt that she really needed to look deep inside herself to find solutions to emotional pain. Having said that, because she wasn’t expecting her friend to live much longer, she was ‘saving up her counselling hours’ for what she knew would be a very painful loss.
 

No-one had ever asked Carole about the ‘horrific time’ caring for her mum when she was a teenager. When she talked it through with a psychologist she became proud of how she’d survived it.

No-one had ever asked Carole about the ‘horrific time’ caring for her mum when she was a teenager. When she talked it through with a psychologist she became proud of how she’d survived it.

Age at interview: 53
Sex: Female
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I wonder if you could say a bit more about, about the neuro-psychologist. I guess many people won’t know what a neuro-psychologist is or what they do and how they can help somebody in your situation.

Right. My consultant suggested I went to see the neuro-psychologist. She’s a, a clinical psychologist with expertise in neurological things like MS and, and other things as well and I don’t know what else she deals with but, for me, all I’m bothered with, is the MS bit really. And I went and had different, several sessions with her and she did lots of CBT, I’ve forgotten what it stands for.

Cognitive behavioural therapy.

Cognitive behavioural therapy, yes. She did lots of cognitive behavioural therapy with me but also gave me the chance to talk through what I’d been through in, in my life and no one had asked me before about it. That’s the first time I’d really talked about it to her, or to a professional person, certainly and she made me realise that it was a horrific thing to go through, when we were growing up, and, and I felt quite proud of how I’d survived it, in a way really and how I can still laugh and joke about things and, and look, look back at that time and not completely, you know, crease up with things. 

It’s so she was great with that. I had many more sessions than perhaps I was meant to be having. She, yeah, she kept renewing my sessions because it had been such a horrific time for me really and because I was going through the MS myself and was terrified that what happened to my mum was going to happen going to happen to me. So I had, poor woman, [laughs] I had a load of sessions with her and no, but she’s brilliant and yeah, absolutely brilliant.
 

Kay recommends going to counselling to ‘have an outlet to talk about the things you sometimes feel that you can’t say,’ about your experience of being a carer.

Kay recommends going to counselling to ‘have an outlet to talk about the things you sometimes feel that you can’t say,’ about your experience of being a carer.

Age at interview: 38
Sex: Female
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And I actually wish I’d had the counselling after my mum died. Because there were a lot of things that, you know, I hadn’t really talked about, about my mum and my relationship with my mum, and then my dad, and then obviously my brother and how my brother and his health has, has impacted so much on, on everything in our family, especially over the last seven years, but, you know, in the ten, eleven years since his diagnosis. It’s always there at the back that, that, “[name]’s not well and he’s, you know, what’s going to happen?” 

The going, yes, going to counselling I, I can really recommend. Because even if you’re, you’re going to counselling to talk to, and it’s not about bereavement, but you, you can be mourning for the person that, that has been diagnosed with MS and, and how they react and the behaviours as a result of having MS. There’s definitely a personality, there’s definitely personality changes in my experience, and having to sort of cope with that and, and come to terms with the fact that you have a different relationship with that person now. We’re not, we’re not a brother-sister so much as a parent-child. 

And, and having an outlet to talk about the things that you, you sometimes feel that you can’t say because people might think you’re, you’re cruel or wicked or selfish, “How can you say that about, you know, your brother?” You just think, “Oh, well, you know.” You know, I feel like I need somewhere to be honest sometimes. And, and that’s been, that’s been quite a useful thing for me, having, having got that off my chest about the feelings of, you know, feeling a bit resentful maybe. To think that like, you know, I’ve had to put things on hold in my life, um you know, starting a family of my own, you know, that's, I can’t even think how I would have coped if I’d had children and looking after my brother. And I know I’m not looking after him in the sense of he’s living with me and I’m doing day-to-day care, but, you know, I never stop thinking about him, I never stop thinking about how things that I do might have an impact on him.
See also ‘Getting help with care needs for MS’ and ‘Messages to health and social services

Social services and local authorities

Views about local authority social service departments were also mixed, and people often pointed out how difficult it can be to know what’s available, what you have to pay for and what can be provided free. Social services may be able to supply equipment, adaptations and personal caring services. For Robin, the ‘MS Navigator’ in his local authority was a really helpful person to go to for advice and assessment.
 

Contact with social services, through the ‘MS Navigator’, has put Robin in touch with services to help with the installation of a wet-room and also provided emergency care for his wife when he had to go into hospital.

Contact with social services, through the ‘MS Navigator’, has put Robin in touch with services to help with the installation of a wet-room and also provided emergency care for his wife when he had to go into hospital.

Age at interview: 72
Sex: Male
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One other resource that’s worth going for is your local social services, they haven’t any money to give you unfortunately, or very little but what they can do is give you useful advice and attention. Our social services for instance have a person called the MS Navigator on their staff and you ring her up and say ‘Look this is the problem we’ve got, my wife has MS who do I talk to about this?’ and she goes and finds, put you in touch because these departments are all over the place in different buildings and different towns and all the rest of it. And we’ve got one chap for instance who’s a physiotherapy expert who’s advising us on the layout of the wet room that we’re going to install downstairs and he knows all about that as that’s his speciality. And he’s also put us in touch with a firm of project managers over in another town in the area who are coming in and advising us on how to do it, how to plan it, all tricks and things you’ve got to know about building regulations and all the rest of it. So yes that’s another place to go for help.

And as I say find out if you know where your social services department are and ring them up and explain what your problem is, ask them to come along and have a look at your wife and they’ll even do an assessment on all your wife’s needs or your husband’s needs or whoever. which can be very useful because then they know if for instance the carer falls ill, carers do fall ill that they’ve got somebody on their books that’s going to need emergency looking after, so one phone call will bring them round hot foot. 

I had a bad accident last year where I fell downstairs and punctured my lung, I had to spend a week in hospital and they came in and were very helpful then. So never despair, there’s always a way out apart from the final analysis of course where there is no way out for any of us.
Relationships with social services were not always easy and some people were not satisfied with the services provided. Chez said they were helpful to start with but, as her husband’s care started to cost more money, she found herself ‘fighting’ with social services. Sarah Z had an ‘enormously tense time’ negotiating social work support for her husband. Dave was frustrated and annoyed that funding had been withdrawn from the sitting service which gave valued respite from caring for his wife.
 

Chez gets disheartened and depressed by ‘fighting’ with social services, but she keeps going because she wants to get the best possible care for her husband.

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Chez gets disheartened and depressed by ‘fighting’ with social services, but she keeps going because she wants to get the best possible care for her husband.

Age at interview: 42
Sex: Female
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And that was the start of working with social services. It was quite easy to start off with because they were very helpful. [Name] then started to go into hospital. We had help from IRIS, which is another unit of social services that help you when a person goes and comes out of hospital, they will help you with six weeks of care after the person comes out of hospital. We got that sort of care It’s only been in the last three years as his condition has deteriorated and he’s gone into hospital more and more that the care side has now gone on to the financial side where you have to start paying for the care. The NHS continuing health care which is supposed to have, [name]’s supposed to have had, has different criteria for different counties. It’s not a set criteria all around the country, so one county might accept him but this county won’t accept him. So I now have to fight social services with the amount of money that they would like to take off me with the amount of money that I actually have. And it’s a, let’s win contest of who’s actually going to win out of this. And at the moment I’m the stronger person. Because I’ve got more information as I’ve gone along and have found out what I can use, what I can’t use, what is acceptable, what isn’t acceptable and it’s a way, you’re always trying to find out the information that is needed for the, about that they would like to have off you with the amount that you have or you just fight. The only word I can use is you are fighting social services all the time. It’s not a happy medium with them. They’re always after something if it’s not information they want to know the hind leg off a donkey, you know, you just cannot have a nice happy medium conversation with them. It’s always we would like to know this, we would like to know that, we want you to do this, we want you to fill this form in, we want you to fill that form in. And you’re going over the same information time and time and time again. It’s a bit like the Disability Living Allowance forms etc, you go over the same question about five times. It’s asked in different ways but you’re going over the same question time and time again. And it can get very down, disheartening. And you can get very depressed with it. Just with the social services side of it. But at the end of the day you want to achieve the best that you can and you want to have the best care that you can for that person that you love. So you just keep going and going and going until you can go no more.
 

Sarah felt that social workers were ‘dismissive’ of the issues she was facing in living with somebody who was experiencing difficulties.

Sarah felt that social workers were ‘dismissive’ of the issues she was facing in living with somebody who was experiencing difficulties.

Age at interview: 59
Sex: Female
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You talked about carers coming in and referred to some 'run-ins' with Social Services around all that. Could you say a bit about that process?

I had run- ins with social workers because, I have friends who are social workers so I’m not unaware of the vast array of problems that they come up against, but I felt that their attitudes were patronising. I felt that they would send in something like an occupational therapist, we got the bathroom done and then they’d say, ‘Well, you need to improve the access at the front of your house.’ Yes, we probably do. And they’d give us all this stuff that had to be done I’d say, ‘So, what help is there to get all this?’ ‘Oh, you have to do it yourself.’ 

And I found them just dismissive of, really, the issues. Everything on the surface may seem fine, and I know we’re luckier than many, but there was a complete lack of awareness of what it was, from my point of view, what it was like to actually live alongside somebody who was experiencing difficulties. They would regard me as a very difficult woman. I was the problem. I’m quite happy for that. But I felt really important that my husband deserved just as much help and care and attention as anybody else. Just because he was a professional man didn’t mean that he was in some way more able to cope or needed less support. He found it difficult to accept but I would still bang my drum and say, ‘Come on. What are you going to do?’
As in Sarah’s case, there were concerns that social workers did not always appreciate or give priority to the needs of carers themselves as opposed to the person with MS. Betty felt that she was being treated as lazy, or as a benefits cheat, because she wasn’t working. Dave said: ‘Me, what do I get? Zilch, unless I go out to a carers’ meeting. I get an assessment once a year if they can be bothered to come out, they did it over the phone and that’s it’. 

(Also see ‘Adaptations, aids and equipment for MS’).

Voluntary sector support

People sometimes looked beyond the statutory health and social care services for support, to charities and self-help groups. Many people valued the information and other services provided by major MS charities like the MS Society and the MS Trust. Betty had really appreciated the MS Trust 24 hour helpline. Mike and Jenny were grateful for a grant from the MS Society towards the cost of their honeymoon. But Mully felt that the means-testing applied for some services wasn’t always done ‘in a kind way’.
 

Betty felt that the person on the MS Trust helpline understood her situation, because his wife has MS too.

Betty felt that the person on the MS Trust helpline understood her situation, because his wife has MS too.

Age at interview: 58
Sex: Female
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I’ve plugged the MS Society so I’ll plug the MS Trust. They do a fantastic 24 hour helpline and I have rung them on many occasions. It’s either them or the Samaritans, basically. There was one time, the first time I rang up, with them I didn’t know anything about them it was just a phone number, ring them .All the volunteers are people with MS or they’re carers so they know and I actually rang and I got through to a guy called [name] and I was sobbing my heart out and I’d had a really bad day and all the rest of it, and he told me a joke and it was a bit rude. He didn’t know me from Adam and within ten minutes I was laughing. He said, ‘I know exactly, yes, the wife’s got it, I know,’ and he knew.
 

Karl found a ‘lively discussion forum’ on the MS Society website which was particularly helpful when his partner was newly diagnosed.

Karl found a ‘lively discussion forum’ on the MS Society website which was particularly helpful when his partner was newly diagnosed.

Age at interview: 40
Sex: Male
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You mentioned the MS Society a couple of times, looking at the website for advice and support, the research documents and so on. in terms of support could you say a bit more about what kinds of support you personally have found helpful through that organisation and its website?

I’d have to think about that. Yeah [cough] it was mainly support through the internet, through their forums, because they had quite a good lively discussion forum on there. There was quite a good section for the newly diagnosed. I think that was where I got most of my, our help from, the information, so it’s mainly useful for that, I think, which was quite good because you could sort of talk to people and ask questions to other people, go on line and everybody was pretty much in the same of sort of position so that was quite useful.

Did that lead to any kind of ongoing relationships with other people or was it just kind of one or two occasions entry into the forum and out again?

One or two occasions but things like that they wasn’t sort of lasting, it wasn’t anything that you could build on. I think if you were that way inclined you could, because I know there’s quite a strong local group that meets from the MS Society. I know they have, they meet every month in one of the coffee shops in [place name]. That’s, that’s good but it’s not something that we thought that we’d really want to do because we do go out on occasions together and we’re not really the sort of people that would hang around in a group anyway, so that sort of thing doesn’t really suit us.

And the carers forum on the MS Society website, is that something that you’ve had a look at yourself?

I have. I didn’t find it that useful because from, what I could tell, a lot of people only came to that particular forum when they were on their last legs and they were absolutely desperate for help, when it was the last resort. And there were a lot of very painful stories on there and I thought, “Well, I’m not at that stage” and I’d probably get help before I got to that stage, so I find that quite off putting sometimes. So I didn’t go on there too much.
Some people were members of local MS Society branches; this meant that they gave support, through fundraising for example, as well as receiving it. Dave, Patience, Tony and Chez all had connections to the armed services and belonged to a group called ‘Mutual Support Armed Forces,’ linked to the MS Society. A charity set up to support visually impaired armed forces personnel bought a house for Patience and her husband.
 

Dave describes the help he gets by being a member of the ‘Mutual Support Armed Forces’ group.

Dave describes the help he gets by being a member of the ‘Mutual Support Armed Forces’ group.

Age at interview: 73
Sex: Male
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But one thing about MS you have a caring society of people with MS, we look after one another. We belong to, we belong to the MS Society and we used to go to [place name] and to fetes and things like this fundraising and now we belong to Mutual Support which is for the armed forces. I used to be in the RAF and I also worked with the MoD so I was eligible to join and I must say that the people there are a tribute. In spite of this debilitating disease they’ve managed to press on and make the most of it. And the attitude of the armed services these days is quite enlightened; they no longer throw people out at the first instant but they retain them, they give them a job more suitable for their disabilities and things like that, so. 

But people in Mutual Support are wonderful. They are supportive; for instance, Trish fell over in March of this year, six months ago, and broke the head of her femur. Well, I was getting people ringing me up saying anything we can help, this that and the other, besides our own circle of friends. Having people like that in the background doing it for you, that’s it. We only meet twice a year but we have a three day weekend at some hotel somewhere and we thoroughly enjoy it. Talks, often a lot of beer or wine but it’s a good fun, we all can relax and enjoy each other and enjoy that.
Robin and Eric both spoke highly of MS Therapy Centres, not just for the services they provided but for camaraderie with other people with MS and their carers. Robin learned at the MS Therapy Centre that the Citizens Advice Bureau (CAB) would visit his wife at home, which led to a reassessment and increase of her Disability Living Allowance. Betty described the help she got from ‘a lady at the CAB’ in negotiating services with the council as ‘incredible…without her help I probably would have had a nervous breakdown.’

People join support groups for a range of reasons; to get practical information, emotional and social support and reassurance that they are not alone. Mully didn’t enjoy being part of a formal support group, but did value getting together informally with other people with MS.
 

Mully and her husband had enjoyed being part of a group of people with MS who met for social experiences and to share information.

Mully and her husband had enjoyed being part of a group of people with MS who met for social experiences and to share information.

Age at interview: 63
Sex: Female
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We did then, when we moved here, we did join with a small social group of people with MS in [town name] and that actually, turned out to be great fun because they were a bunch of like minded people, like Charles and myself, varying age groups, and various different conditions of MS. So I think that only two were in wheelchairs, one used this little buggy and the others were quite sort of normal to look at until you realised that they had that MS walk, that stagger. One of the beneficial things about that MS group was that we did no fund raising and we met for purely social experiences once a month for lunch and really to share information because there are all sorts of things that happen through the hospital system and the GP system where you’re given something and you’re not given any information about it. And one of the things that we found was that because Charles and I live on the computer and we both read, we knew far more about MS than anybody else in the group. And simple things like the powder you take for bowels, constipation, they were still being given the old Fybogel stuff, which doesn’t work for people with serious, serious constant constipation, to something as simple as what is on the market is actually, now being prescribed. But I mean now we’re talking about ten years ago.
John X described the MS group his wife went to as ‘depressing’, but said her arthritis group was ‘fun’. The local Carers Association is, he says, ‘a self-help group worth going to’ and he joins that group himself once a month. 

Other people felt that group activity was not for them. Karl and his partner preferred to ‘hang out together’. Neither Louise nor her husband wanted to attend an MS group, partly because they wanted to carry on having a normal life and partly because he didn’t want to see people in a worse condition than himself. Mully felt that sometimes there was competition among people at support groups to be ‘less of a cripple than you are’. Having been very active in the local MS Society, Louise Z said she had learned that ‘before people get MS we are all very, very different and MS doesn’t make us any more similar. And sometimes when you get together in a place like the MS Society the only thing you have in common is the illness or that experience of the illness. And to expect everyone to want the same sort of things from a Society, it’s never going to happen because we’re all different’. 

See also Looking for information on MS; Being a ‘carer’ and Advocacy and activism for MS.

Last reviewed March 2020.
Last updated July 2018.

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