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.
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.
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.
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.
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.
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.
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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.
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.
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.
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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.
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.
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.
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’.
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.
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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.
Last reviewed March 2020.
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