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Multiple Sclerosis: friends & family experiences

Messages to health and social care services

We asked people what their messages would be for health and social care services based on their experience of having a relative or friend with Multiple Sclerosis (MS). Many such messages appear throughout this website. Here we summarise some additional key points that people wanted to get across. 

Messages to health and social care services were often about the person with MS, rather than the relatives or friends themselves, but there was also some overlap. Several people mentioned that their relative with MS had, ‘on the whole’ received very good care. Anthony’s message was, ‘Keep doing what you’re doing now, because the people we’ve had contact with have been nothing short of superb’. Emma wanted her husband to have more contact with the consultant.

 

Mully thinks that social services provide a good service with a limited budget but that hospitals should give more information when you are sent home after an operation or other procedure.

Mully thinks that social services provide a good service with a limited budget but that hospitals should give more information when you are sent home after an operation or other procedure.

Age at interview: 63
Sex: Female
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Social services are absolutely wonderful with what they can do. I mean they are so, the poor things, they just tear their hair out most of the time because so many people lose, every time the government decides that they’re going to cut this budget or that, well, they tell people that they can’t have something and then, all of a sudden, the government changes its mind and gives a whole chunk of money to this person but not to that person. And I think that they do a wonderful job trying to deal with that. I think my only criticism is that there is a lack of information when there is a hospital procedure, like an operation or a procedure. The information about what happens afterwards, when you go home, especially when your husband has only been in for a few hours because they wanted out, no germs, no bugs, thank you very much, is very limited. They give you a bit of sticky plaster and a spare and some paracetomol and send you home and I think that is terrible. That is counterproductive because within two or three days, that person is back in hospital again. But you’d think that that would be a self-evident truth wouldn’t you because that’s what all the statistics say as well but it doesn’t seem to it doesn’t seem to filter through the levels does it, which is just odd.
 

Kay and her husband have had good experiences of health and social care. She thinks that might be partly because they come from a professional background.

Kay and her husband have had good experiences of health and social care. She thinks that might be partly because they come from a professional background.

Age at interview: 49
Sex: Female
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I think as far as health and social care is concerned we have had a very good experience. Everything from the ambulance man to the specialist top consultant, we’ve been very fortunate. I do wonder sometimes whether that has been made easier because we’re sort of almost talking professional to professional, we’re coming from the same sort of background. And certainly it would be harder for people who perhaps didn’t understand their symptoms or their disease in the same way as, as, as we’ve been fortunate to be able to do, to be able to communicate and really understand what the doctors were saying. 

By and large I think the doctors do a great, a great job. The hardest thing that we’ve found has been silence. And I, I know there are people who don’t see their doctors as frequently as we do, for example. We have six-monthly check-ups, almost whether he needs them or not. And that’s really helpful because you can, you can make a list of your questions and, and every six months you get the answers. Whereas I know my cousin, who was recently diagnosed with MS, was just left high and dry. No future appointment made for follow-up of any sort. And that seemed particularly difficult because she was late onset. She wasn’t diagnosed until she was in her 40s. 

So I think silence is the hardest thing to cope with. And so, being proactive, you can find the answers to your questions. But I think there’s a really important role for the health service to, to keep signposting people to what else is available. Even, you know, like the, the local charity gave us a signpost towards the taxi card scheme to help subsidise transport. We didn’t know about that; that’s a really practical help. Yes, “Just keep talking” is the most important thing.
 

Anthony thinks his wife has received fantastic care. He really appreciates being able to talk to people who are understanding and knowledgeable.

Anthony thinks his wife has received fantastic care. He really appreciates being able to talk to people who are understanding and knowledgeable.

Age at interview: 43
Sex: Male
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With the exception of our first consultant, the one who sat on the fence, I would have to say from our GP to our specialist to the chap who came round from the council to demonstrate the gadgets to the woman who came demonstrating the various injections to the new physio that my wife’s recently started with, I would have to say everybody has been absolutely fantastic. Very, very understanding, very patient, very knowledgeable, even with something like MS, which, as I say, has got so many different manifestations. I would say to them just keep doing it , keep doing what you’re doing now because the people that we’ve had contact with have been nothing short of superb and even though there is no miracle cure out there and there’s next to no prospect of my wife’s condition ever improving, having people like that to talk to, to explain things to, to help is great. Simple as that. I can’t put it any simpler than that.
Some people mentioned extra services that would improve the quality of their life as a carer; for example, getting a higher rate of Personal Independence Payment so that they could afford to pay a care worker to help put the person to bed, or turn them during the night. But most did not expect to receive these extra services because they thought that funding was limited.

On the other hand there were some services which people thought it was reasonable to expect. Betty felt that regular follow-up appointments with consultants and MS nurses should be offered. This might sound obvious, but Kay Z said that her cousin had been recently diagnosed and hadn’t been given any follow-up appointments. Betty also thought that carers should have training in how to lift. 

Anita and Sarah Z both felt that it would have been really helpful if they could have a ‘buddy’ or a ‘mentor’. For Anita, as a teenage carer, it would have made a huge difference to her life to have someone to ‘take her out of it for a while.’ She hopes this kind of service could be organised through volunteering. Emma thinks that psychological care is important for both the person with MS and their partner or carer. Although her husband was, rightly, the focus of care, sometimes Emma wanted to ask, ‘Who is looking after me?’
 

Sarah would have appreciated having a ‘mentor’ to talk to when she was looking after her husband, somebody with similar experience who would understand what she was going through.

Sarah would have appreciated having a ‘mentor’ to talk to when she was looking after her husband, somebody with similar experience who would understand what she was going through.

Age at interview: 59
Sex: Female
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Looking back over the whole experience are there key messages that you could offer to health and social care professionals that might help them to improve the services that they provide?

Yes I do I think that the MS support groups that exist are fine they usually meet during the day which if you are a working partner of somebody who has MS not much help there. I think it would be really lovely if, what I would have appreciated would be to have had somebody as my mentor, somebody I could have spoken to who’d had experience of living alongside somebody with MS. 

I think it’s this feeling that it’s, you that are doing it wrong, it’s a bit like parenting there’s got to be a book somewhere that will tell me how to cope with this, there isn’t a book but to have had somebody to whom I could have spoken to in the same way as I have spoken to my friend who has a brother with MS, I think I would have appreciated that because the, the aloneness although you know you’re not, to be able to form a friendship or a relationship with somebody who you can talk to, who would understand what it feels like because we all have the same emotions that can then sort of say well yes actually I can understand what you’re saying and so you’re supported in a sense that’s not only physical and mental but emotionally as well. 

Because otherwise you’re fighting on all fronts and I didn’t do a bad job but I didn’t do well, I didn’t do as well as I could have, had there been somebody there, I mean there must be enough people who have been through this who I’d hold my hand up and say yes if you’ve got somebody who’s going through what I have been through, I would more than happily say there’s my phone number phone me as and when. I don’t want to be a friend and move into a social situation but on the end of a phone. I think it’s support in that sense, maybe meeting a group’s helpful, I wouldn’t know I never got there. On a one to one it might be.
 

Emma doesn’t really feel entitled to psychological support from the professionals looking after her husband, but she thinks it’s important for her to be as well as possible so that she can support him.

Emma doesn’t really feel entitled to psychological support from the professionals looking after her husband, but she thinks it’s important for her to be as well as possible so that she can support him.

Age at interview: 37
Sex: Female
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But, I don’t know, any kind of psychological support that was maybe the only thing that I might like. For me and for him. He was, he wasn’t good but I was trying to support him. But nobody was trying to support me and, and I remember at the beginning, the, the first thought every morning, especially at the beginning and still now when I leave my house, is how will he be when I come back home? Will it be a good day? Will it be a bad, bad day? You know, because you never know. So, you find, you, I leave you in bed and you’re very good, thank God, how’s he going to be when I come back? So that, that is why I thought that maybe that was missing, someone asking me, ‘Do you need something, darling?’ [Laughs].

Could that be any of the people who, who, who’ve you seen? The consultant, the GP, the MS nurse?

No, I don’t expect the consultant to worry too much about me. But the GP or the MS, the MS nurse maybe. But I never thought actually to tell, to tell the MS nurse, “Can I have an appointment with you because I don’t feel very well?” But again, the MS nurse is for the MS people and I know I’m MS people, my husband is, my husband has MS, but I haven’t do I have to, between brackets, ‘waste’ the time of this professional, that is meant to look after the people that actually need her? You know what I mean? I mean, her time has to be dedicated to the people that really need it. Me, I’m a secondary actor in this, in this process. Although I think it’s crucial for me to be as, as well as possible in order for my husband to be as well as possible.
 

When she was a teenager caring for her mum with MS, Anita wanted a ‘special person’ in her life who would take an interest in her and help her to feel differently about herself.

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When she was a teenager caring for her mum with MS, Anita wanted a ‘special person’ in her life who would take an interest in her and help her to feel differently about herself.

Age at interview: 37
Sex: Female
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I just wanted someone to take me out of it all for a while. I wanted just to be, as you say, a teenager. I wanted a buddy, I wanted a friend. This is quite interesting actually, I hadn’t really sort of made the connection but that’s one of the volunteer things that I do is for children in children’s homes, I actually buddy them. So I think that for me that’s what I wanted, was just to be normal for a minute, just to be a kid. Just to have a special person in my life that would talk to me if I needed to talk to them, or would just let me be a kid. And took an interest and take me for a coffee or would sit down and say, “I know you had that exam today, how did it go?” Take an interest in your life. 

So that would have made me feel different about so many different elements about my life, that one thing because actually what that would have done would have been someone taking an interest, someone challenging my assumptions about myself and what I could be. And then that leads into, you know, feeling different about yourself. And building that confidence which doesn’t get built actually in a, in a family where, you know, you’re not allowed to be a teenager. So, hmm, that would be the one thing.
David’s GP always asks him how he is coping which makes a difference to him; he feels supported and he feels that he is getting good care. 

Some people thought that the health and social care services could be more ‘joined-up’ and more efficient with practical things like supplying equipment.
 

David says that the care services have been good but that they could be better co-ordinated.

David says that the care services have been good but that they could be better co-ordinated.

Age at interview: 49
Sex: Male
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I think the only thing for me is mainly the fact that it did seem a bit, it seems very, I don’t know, bitty. There’s something about it which, it’s been pretty good. I mean the physiotherapist came yesterday, and she was really nice and really good and the one that came before that was really nice and really good. But there’s a certain sort of hit and miss about certain things. You feel as though someone should be taking more concern about what’s actually going on with you in a way that might, you know, so when something does hit you, like it has happened over the last two weeks, you would be prepared a bit more, in a way, because obviously these things might happen, they might not, but there’s such a big, the trouble with MS it’s quite a big thing. It’s not just one thing. It’s lots of different sorts of symptoms.

So it may be a bit hard, but at the same time, you feel as though there could be a bit more foresight. Not too much more foresight, but just a bit more joined- upness. I mean there’s a different… I mean [council name] came out to see us to fit handrails and said they would do something else and then forgot all about it. And it would be nice if someone had taken up the case to coordinate something between themselves.

When we applied for the Disability Living Allowance because we’ve got to get it to get the blue badge whether or not something, the communications that go between different parties would have got through initially. Because when we did it initially they sort of went on one report and not on another report and there was, you know, because Sandra, when we applied for it, we hadn’t seen a consultant for about six months. So Sandra’s condition had changed. So when they wrote back they could only say what they’d said, saw six months ago. So it’s always sort of a bit too late. Because these things are obviously changing all the time. I don’t know, but it just feels sometimes, it feels a bit ponderous and bit, a bit slow, but then that’s the National Health Service in a way.

It sounds like you need some kind of key worker who is on your case.

Yes, yes.

On every aspect of it.

Well, someone you can talk to about it, that’s not necessarily at a consultant level. So, someone slightly below that, that can make… and the MS nurse is proving absolutely, she’s been, come to the fore a bit more over the last year, and I know Sandra has spoken to her a bit more and that’s been very useful. So, you’re not out on a complete limb, so to speak. You do feel as though there are some people there that will know you.

And actually our GP’s been pretty good. He’s been very, you know, he’s been really good, you know, he actually asks me how I am. You know, how are you coping? Even though I’ve been in about something completely different, I’ve been out about some other things, but nothing very major. Routine sort of things and he’s asked me how I’ve been so our GP’s been pretty good and he’s been pretty good towards Sandra as well. 
 

It was difficult for Karl and his partner to get practical help, such as a wheelchair or crutches, when they needed it.

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It was difficult for Karl and his partner to get practical help, such as a wheelchair or crutches, when they needed it.

Age at interview: 40
Sex: Male
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I think the only improvements that they could really make would be in practical things such as we had a terrible time getting hold of a wheelchair for my partner at the time when she had a relapse. She was basically paralysed from the chest down and it was a very difficult time and we badly needed a wheelchair just so that she could get to the toilet and things like that. And we, they, they basically said, “Oh, we haven’t got any.” But they gave us a list of about three places that if you phone these people they’ll be able to get you a wheelchair. One number didn’t work. The other number didn’t sell wheelchairs anymore. The other one was a wheelchair supplier in [place name] but they wouldn’t deliver and [place name] about ten miles from here so that that’s absolutely no good at all to somebody that needs a wheelchair; to say you’ve got to be able to travel there to pick your wheelchair up. So, eventually, we bought an old, sort of, second hand one. But if my partner had been on her own she would have been completely stuck at that point. 

And, again, she wanted sort of crutches, after the relapse. When she was out of the hospital she wanted crutches to see how she could get on with them; she thought that she could walk, perhaps, a few feet if she had crutches. And it took us a very long time to get them. I don’t know if there is a budgetary issue or anything like that; or it could have been Health and Safety issues because before she had the crutches they had to have someone to come around and train her how to use them. So it could have been that sort of thing. But it wasn’t, when we actually needed practical help [coughs] it was quite difficult to get. There’s a lot of, sort of, soft help, emotional support like the carers group and people to talk to and there, there seems to be an awful lot of that but not a lot, we had a terrible time with practical help when we needed it. So that’s, that’s the only improvement I could think.
Several people talked about the importance of communication. Eric made a plea for professionals to ‘listen to what our real needs are,’ and Tony stressed that it was important to talk to the person with MS and the relative ‘as a unit’. Patience said, ‘We need you to listen to us, to work with us.’ Kay Z suggested that the health service has an important role in ‘signposting’ people to what help is available. Betty said, ‘We need more help and the worse a person gets the more help we need. But, unfortunately, you don’t get it. If you don’t actually scream and shout and stamp your feet, people just ignore you.’
 

Betty insists that the only way professionals can understand what it’s really like to be a carer is to meet carers and talk to them about what they do.

Betty insists that the only way professionals can understand what it’s really like to be a carer is to meet carers and talk to them about what they do.

Age at interview: 58
Sex: Female
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Is there anything you would want to say as a kind of summary to health and social care professionals about the things you think they could do better for people with MS and for carers of people with MS?

Right. Definitely they should meet carers. Very often if you say oh you’re a carer they may have met people who are carers of somebody with Alzheimer’s or they’re blind but if they actually took the trouble to meet a carer like me and to actually ask me questions, a bit like you’re doing, you know, this is what a real carer is like, this is what we have to do. Because they don’t understand, they really don’t. If they don’t understand how can they do their job properly? They can’t. They must have training. Nobody starts a job without training but carers have to start a job but we don’t get trained, we’re not taught how to lift somebody out of bed and do this and do that and how to get somebody standing up and the best way to get somebody to, we have to learn this the hard way and that isn’t fair on us because it makes us stressed out and angry. It really does affect our health as well so not only have you got people with an incurable illness who are ill, you’ve got all the carers and our health is all suffering so that’s going to be even more money added to, you know, the little pot. 

They should talk to carers and most of them they don’t. They just assume that you’re a carer a bit like a carer from the council. Well I’m sorry there are a lot of things that carers from the council will not do, an awful lot of things. But we have to, we’ve got no choice. I mean carers from the council won’t wash or launder soiled sheets and things, health & safety. If you get a carer from the council and they have to be somebody, say for instance in bed, they’ve got MS, there has to be two people to get them out of bed if they haven’t got a hoist. Excuse me. There’s me, you know, I can do it. It’s health & safety gone wrong, it really is. And the only way they’re going to understand carers is by talking to us. 
 

Eric thinks it would help considerably if professionals looked at the ‘intricate details’ of what people with MS, and their carers, need so that they can live as normally as possible.

Eric thinks it would help considerably if professionals looked at the ‘intricate details’ of what people with MS, and their carers, need so that they can live as normally as possible.

Age at interview: 65
Sex: Male
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I think they’ve got to learn to understand and listen to the individual with MS and the person that is caring for them to what their real needs are. It may only be small things, but those small things can make such a big difference. The bigger things, yes, they can cope with and is quite readily available. But I think they’ve got to look at the more intricate details, if you like, of what the individual with MS needs and the carer looking after that person needs to try and enable them to continue to have as near normal life as possible. Where at the moment, okay, they listen but they, it tends to give you the impression they put that to one side. The big things, yes, they’re quite happy to deal with. The smaller things, they don’t seem to want to consider it’s their duty to try and help with. But I think it would help considerably if it was a little bit more individually considered rather than a specific plan by let’s say the social service. There’s got to be a little bit more flexibility in that.
When the person with MS had to go into hospital their relatives sometimes felt that they weren’t sure what was going on and that ‘everyone’s so busy you don’t feel you should ask questions’.

Sometimes people wanted professionals to have different attitudes. For example, Ian wanted the doctors he had come in contact with to be more open-minded about treatment options; Sarah Z felt that social workers providing services for her husband didn’t consider her needs enough and that they should have more awareness about the ‘stresses of the person who hasn’t got it’. After continuing to care for her husband while she was having treatment for breast cancer, Kate said that doctors and nurses in the community should keep in touch with elderly people to check that they are managing:
 

Kate thinks that health and social care workers should phone or visit elderly people with serious conditions occasionally to check that ‘everything is all right’.

Kate thinks that health and social care workers should phone or visit elderly people with serious conditions occasionally to check that ‘everything is all right’.

Age at interview: 75
Sex: Female
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Well, I think re-, really from what I’ve said that, I think if they have a person that has any serious illness, not just MS, any serious illness, there are plenty of people with serious illnesses of varying sorts that can’t do anything, and, and the carer is there living, living in the house and looking after them, I think that they, they should take that into account and, and realise that just a phone call occasionally or even, I know they won’t do home visits, but it, I think there are times it wouldn’t hurt them to do a home visit and just say, pop in and say, “Is everything all right?” 

Not just for the person that’s ill, who might be going to the doctor’s, I mean Bernard doesn’t, but a lot of people do go to the doctor’s, but the person that’s caring never goes to the doctor’s. And, and because they didn’t realise, realise when I was ill, nobody seemed to put two and two together that there were two of us quite ill, quite ill in the house actually. Nobody bothered to come. And two el-, I mean we were both in our 70s then, two elderly people in the house with no one bothering what was going on. And I think that ought to be looked into. I seriously think that ought to be looked in-, not just for my benefit. 

I’m lucky, I’m fairly he-, as you can see, I’m fairly healthy. But there are a lot of people of 70-odd that are not as active and healthy as we are. And I, and they are left, as long as nobody moans, they’re left to get on with it. And, and I do think that’s wrong. I know there’s no money, I really understand there’s no money, but they can find money for all sorts of other things. They could at least scrape together at least one visit every six months. 
 

Although there have been a few ‘scary moments’ about funding, Alice says her experience of health and social care for her friend has been very positive.

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Although there have been a few ‘scary moments’ about funding, Alice says her experience of health and social care for her friend has been very positive.

Age at interview: 35
Sex: Female
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You’ve talked about various types and levels of support from health and social care services over the years. If you were kind of talking to the health and social services en masse with some kind of summary message about the services they provide, what might that be? 

In a way, I’m less involved in that. That’s more his parents domain. They deal with social services much more than I do. I did it at the beginning but not so much now. On the whole, we’ve had a really good experience. His social worker at the start was very instrumental in helping him move away from a first floor flat with three flights of stairs. The Primary Care Trust has been very supportive. We’ve had a few scary moments along the way with the thought that funding might be declined and, obviously, there have been lots of interviews and assessments and various, you know, points, measures of his condition along the way, you know. And we were worried that he might be put into a residential accommodation, which I just think he would have, he wouldn’t have survived that at all. 

So no, I’m really not the best person to speak to about this because I’m not involved in the day to day side but GP wise, palliative care wise, social services wise, whatever it is, just we’ve had a lot of a lot of help because I think, you know, a young, as he was then, a young single man. He’s had, you know, I wonder what help he would have got as an elderly married man or something like that. I mean I think it’s just so dependent on your circumstances and because he’s so dependent on oxygen and things like that, he does fulfil the kind of extremely kind of high needs criteria and with elderly parents and all the rest of it. No, my experience of it has been has been very, very positive.
(Also see ‘Getting help with care needs for MS’ and ‘MS: contacts with health, social care and voluntary organisations’ and ‘Decisions about treatments for MS’).

Last reviewed March 2020.

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