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.
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.
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’.
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.
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].
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.
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.
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.
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.’
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.
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.
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.
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.
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.
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.
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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.
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?’
(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.
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.
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.
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.
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.
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.
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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