Multiple Sclerosis: friends & family experiences
Advocacy and activism for MS
Some people we spoke to described themselves as an ‘advocate,’ a ‘champion,’ or an ‘ambassador’ for their relative with MS. They talked about things they had done to push for the benefit of the person with MS; for a particular treatment, for equipment or access to facilities, or for better care. Some people got involved in fundraising for MS research as a way of helping their own relative indirectly.
Paul talks about fighting for funding to get his wife a particular reclining chair. ‘If the rules need changing,’ he says, ‘argue and change the rules.’
Paul talks about fighting for funding to get his wife a particular reclining chair. ‘If the rules need changing,’ he says, ‘argue and change the rules.’
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We shouldn’t have to fight like this. But you’ve got to fight it. And you’re an individual, you have rights. The person you care for has rights, as an individual. And you don’t have to do what they say: [if] the rules need changing, argue and change the rules. There’s people out there to help and there’s loads of information on the web.
Bernard used information he had got from reading medical literature to persuade a consultant to prescribe beta-interferon for his wife.
Bernard used information he had got from reading medical literature to persuade a consultant to prescribe beta-interferon for his wife.
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Okay. Well there was, there was a, I wrote to the G… to the consultant, and said, “Why is it that my wife isn’t on Betaferon? Is it because of money? Is it because you’ve selected only a few people? What’s going on here? Is it our post code?” The doctor wasn’t straight with me, and didn’t really reply for a long time. And while he was… while I was waiting for a reply to a letter, let’s say that I’d sent two months earlier, I read an article on line from the Lancet that said all MS suffers benefited. It wasn’t just secondary, secondary progressive sufferers, it was all sufferers.
And so, with this ammunition in the Lancet, I enlightened him as to what was in the Lancet and he read it and he got back to me and said, “Okay, we’ll go ahead and do it.’ So it then became the, roughly ten years of being prescribed Betaferon, injecting every two days.
The last three or four annual consultancies we had with the consultant, he would say things like, “Hm, are we sure we’re still right to be on this Betaferon or not? Do I see…is it still helping you or not?” Round about the ninth year of being on it, he decided that perhaps it was best and, with our agreement, too, she came off the Betaferon.
But because things seemed to degenerate suddenly… Linda went back… onto the Betaferon, but again there was no instant or readily recognized improvement. So she came off it again. But it did take a bit of pushing and shoving to get this Betaferon in the first place. If I wasn’t acquainted with the Lancet, I don’t think it would have happened.
So for some people who aren’t au fait with that, it could have been a, it could have been a big obstacle in their life. It seems, now, that Betaferon is no longer a post coded item, though I did hear that in other countries, Betaferon is far cheaper than it is in this country. So the chemical people are making a fair amount of money out of it. And, well, the MS sufferers are losing out because of it.
Norma was worried that her son’s symptoms weren’t getting any better and that he didn’t have a diagnosis. With some effort, she persuaded his GP to talk to her about her concerns.
Norma was worried that her son’s symptoms weren’t getting any better and that he didn’t have a diagnosis. With some effort, she persuaded his GP to talk to her about her concerns.
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Anita was her mum’s main carer through her teenage years and into adulthood. She spoke up when she thought her mum wasn’t getting good care.
Anita was her mum’s main carer through her teenage years and into adulthood. She spoke up when she thought her mum wasn’t getting good care.
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Kay goes with her brother to hospital appointments and sometimes has to speak up to ensure that he is properly cared for. Having power of attorney gives her authority to act more widely on his behalf.
Kay goes with her brother to hospital appointments and sometimes has to speak up to ensure that he is properly cared for. Having power of attorney gives her authority to act more widely on his behalf.
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They ummed and ahhed for a while. We went, we went into a little room and they pointed at, a bed like you’d have in the GP surgery, with no arms, no way of getting him on. There was no hoist in the room, no, no slide board. I was like, “I’m glad I’m here. Is [name], are you moving, you know, how are we getting him, you know, we can’t put him on there” first of all was the first thing. You know, “There’s no support, there’s no, he needs arm rails, he’s completely immobile.” “Well, we’ll push the bed against the wall and you can sit on the other side and, you know, that will be okay.” I was like, “No, it’s not.” And I’m thinking, “Imagine if I’d not come with him. Would they, would they have stuck him on this bed?” I was like, “I’m not putting him, having him put on that bed.” I was like, “I’m just not having it.” Eventually it transpired that the appointment was a false appointment and we had to go home. But it was just as well we hadn’t moved him off the stretcher because we managed to get back with the same patient transport people.
But sometimes it, it astounds me that people don’t have as, especially in hospitals, as much regard for how disabled someone can be. That’s not the first time where I’ve been somewhere and he’s had to go for a scan or something and they’ve said, “Oh, if you can just slide on to this bed.” And it’s like, “Have you read the notes of this person that you’re seeing? Can you, can you not see how disabled they are from the fact that they’ve come in on a stretcher, you know, would suggest to you that they can’t even sit up in a wheelchair?” It is worrying sometimes. But then on the other hand there’s lots of occasions where he’s had, well, excellent, excellent support and care in hospital. And, you know, the fact that he comes in on a stretcher sometimes means he jumps the queue. Which is always good when you’re going to hospital.
Do you have lasting power of attorney?
I’ve got enduring power of attorney. They’ve changed the power of attorney since, I think, the last couple of years. It must have been in 2006, I think. My, I don’t know really whose suggestion it was but there was a suggestion in the family about getting power of attorney. And I think my brother had wanted my father and my mother to have it. And my father decided for some reason that he didn’t want to have power of attorney for my brother. So my mum asked if I would do it with her. Fortunately we had it set up so we could act jointly and severally, because otherwise we would have had to do it again after my mother died.
So I’ve had power of attorney for my brother for all that time, the last five years. I’m at the moment trying to debate about whether to go for the lasting power of attorney because of a legal matter that I need to have resolved. Because of what [brothers' name] neurologist has said about the amount of time or the amount of time he might have left and the fact that the solicitor says that it can take some months to do, I’m not sure whether to do it or not. And so I’m waiting to try and speak to my brother’s GP about whether they think my brother has capability to be able to understand what I’m saying to him about this legal matter that we need sorting out. But everything is always so complicated.
Some people we spoke to worked with, or established, groups or campaigns as a way of being involved in fundraising or raising awareness of MS and carers needs. Several people had taken on formal administrative and fundraising roles of local MS support groups or carers organisations. Mike is a member of the online ‘welcome team’ for a group called ‘Shine on Scotland’ which campaigns for treatment and cure for MS. Norma set up a group, named after her son who had died with MS, to raise awareness of MS in the black community. On top of his activity for the MS Society, Tony campaigned politically for the continuation of Carer’s Allowance beyond the age of 65. Jean’s group got their local MP involved in a campaign to fund an MS nurse post. Sarah became a young carers representative for her local MS group when she was 10 years old and has been involved in raising awareness of young carers needs ever since. Being in a group can be a source of support, encouragement and friendship.
Family and friends often get involved in campaigning and fundraising for MS charities. People with MS varied in the extent to which they wanted their relatives to be active on a broader scale. Tony’s wife eventually wanted him to stop being so active in the MS Society when her condition deteriorated and she felt that nothing more could be done for her.
Tony was secretary of a local MS Society branch for nine years and helped with a regional reorganisation. Later, he campaigned for changes to the rules about entitlement to Carer’s Allowance after the age of 65.
Tony was secretary of a local MS Society branch for nine years and helped with a regional reorganisation. Later, he campaigned for changes to the rules about entitlement to Carer’s Allowance after the age of 65.
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But after I’d done it for nine years I was really badgered by my wife to say, you know, she didn’t want to be involved any more really. She had gone through the stage of the optimism after first diagnosis, then going through the period of hope, if you like, and then after a time realising that in her case, with the sort of di-, the sort of MS she was, she had, so to speak, there was going to be really not much that could be done for her. And she really didn’t want me to be involved too much in the society. I had been involved with the national society. The local area had been re-, reorganised and the headquarters asked me to get involved with setting up the, the particular region. We, it’s called the s-, I think it’s called the [name] region really now and it’s [name] and so forth. So I got involved with that and helped set that thing up. I contemplated going as a, a trustee but she wasn’t, she wasn’t, didn’t want me to do it. So, you know, there’s no point, no point doing something if she doesn’t want me to be involved.
And so now we are still members of the local branch of the MS Society. We do the odd things. But she’s not, she feels now the Society can’t do anything much more for her as a national organisation. I know that they’re putting money into research and so forth, but it’s, probably it won’t be any research results which go to help her. All we do now is to monitor and control her symptoms. And so the idea of a cure for her is sort of, she’s accepted it. And so we live life accordingly. But as we all know, MS doesn’t kill you. It’s something else that’s going to probably kill you. And so the idea is just to keep, keep life just on an even keel.
I’m just a member of the carers’ organisations but I try not to let things stand still. Sometimes you win, sometimes you don’t. And when I was, I retired from the Royal Air Force at 55 and after a couple of years one of the Social Services people said to me, “Do you get Carer’s Allowance?” And I said, “No, I don’t. I don’t think I qualify.” And anyway this lady looked into the situation and said, “I think you probably do.”
So I applied to get Carer’s Allowance and, yes, indeed I did qualify. And indeed I actually got Carer’s Allowance. Which was not very much, as you know, but I did get it. I reached aged 65, which is of course when you get the state pension, and I started receiving the state pension. But the Carer’s Allowance, although I had an underlying entitlement, the Carer’s Allowance stopped. And I started quite a campaign with, through the MP and with m-, with a minister and the Civil Service about, “Why was it that I get to 65, I’m a carer, I still have all the costs I had the day before I was 65, and yet you’ve stopped it.”
And they said, “Oh, well, then of course you get the state pension and that comes out of the same pot, so you don’t qualify.” And I said, “But you see, hang on a mo-, moment, a man in exactly my position who finished the Royal Air Force in exactly the same rank and all that sort of thing gets the same pension, state pension but he doesn’t have carer’s responsibilities. So I’m now lumped in with the same sort of person who doesn’t get, doesn’t have carer’s responsibilities, and I’ve lost the Carer’s Allowance. Why is that?”
Of course I got nowhere and I’m not likely to get anywhere. But it did just annoy me. It still, still rankles that I pay £70 every Thursday. Clearly a cost that, and a chum of mine who’s exactly the same rank I play golf with doesn’t have, and it just rankles a little bit. Well, I suppose we have to put up with that. The argument they, I, they, I suppose they deploy is, “But your wife gets Disability Living Allowance and she’s supposed to sort of support you in that.” Well, okay.
As well as fundraising for the MS Society, Betty is a trustee of a local carers group, ‘fighting’ for the interests of carers in her borough.
As well as fundraising for the MS Society, Betty is a trustee of a local carers group, ‘fighting’ for the interests of carers in her borough.
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Can you describe to me how you became involved with the Carers Association?
How?
Yes, what was the process, how did you first make contact with people or establish yourself in that role?
Right I wasn’t told there was a carers organisation around here, wasn’t even told there was a local MS support group. Yes, I am on the committee of a support group now, because I’m very ‘MS, more people should know about it.’ That’s something else, people do not understand MS. I do get very angry because there are lots of people who have got MS and they can still work, to look at them there’s nothing wrong with them but then you get the other side of the coin and you’ve got people that are really disabled with MS. I mean some of our members they are so disabled it’s frightening. So, there’s very much, you know, people do not understand MS.
Basically what happened, one day I was wandering around doing nothing, probably chatting to a stranger at a bus stop, I can’t remember what I was doing, and I had to go and see the local CAB [Citizen’s Advice Bureau]. Without the real, there was a lady at the CAB she was a Rottweiler, she was an incredible lady and without her help I probably would have had a nervous breakdown, trying to deal with the council and God knows who else. And she said to me, ‘Oh, there’s a local support group. ’ But nobody had told me and I’d been in this situation six or seven months and, literally, I went and knocked on their door and said, ‘Help.’
And I, yes, they had socials, which I used to be able to go to but unfortunately now I can’t. They’re, it’s a local group, you have to be in this borough, they do have a lot of carers, obviously . They try and do things for carers and the people they care for but, like I say, some of the carers I met they were so down trodden and serious if somebody had said, ‘Right, you get no more money, they’d have just said, ‘Okay, fine’ and would’ve just curled up and died. And I wasn’t going to be like that. So I used to go to a lot of meetings and I got involved with meetings with local councils and things like that and yes I’m, I was probably a pain in the arse because at these meetings, there was always ‘somebody from the council who didn’t know an answer to a question and I’m one of these people that, I used to e-mail them so probably they were quite glad when I decided not to do that anymore, sorry.
And then there was an opportunity, because they wanted a Trustee and one of the people who I became very involved with there who, you know, sort of put me up for all these things, he said, ‘Go for it.’ And I thought, ‘Yes, I am going to go for it.’ So, I’ve been a Trustee there now for, I don’t know, four years. But, unfortunately, Government cuts you know, it’s all very well a certain politician saying, ‘Big Society,’ and charities can, you know, sort of takeover but they can’t, they’ve got even less money. I mean, I’m the local fundraiser for the MS group and to fundraise now is blooming hard. I mean, it’s never been the easiest job in the world but it is very, very hard because people have got less money. So this ‘Big Society’ doesn’t work. It never will work. End of party political [laughter].
Working closely with the MS Society, Norma set up a support group to combat the secrecy and stigma about MS which she saw in the black community.
Working closely with the MS Society, Norma set up a support group to combat the secrecy and stigma about MS which she saw in the black community.
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I named the project after Shane, it’s called The Shane Project and the reason I started it was because when Shane with MS I found that within my own community they just did not know about Multiple Sclerosis. It’s getting better now but at the time you say MS and it would be as though you’re talking about Marks and Spencer’s, it was never a condition. And in the black community conditions like that are stigmatised, I think it might be based on ignorance because our country there is nothing like that and for whatever reason we just can’t deal with it so we will keep it a secret. But I decided it doesn’t matter, it’s an illness why would I keep it a secret? Because there are other people out there who just might fall into the same trap, they don’t know, so I decided to start The Shane Project.
I got funding from the Millennium Award which comes through the MS Society. Shane was a member of the organisation. I didn’t know anything about charitable organisations. I just thought that is what I want to do. And I asked someone I knew to write the bid for me so I could get the money to start the support group. When I look back I just worked from back to front to get things right because I didn’t know. All I had in mind was that I’m going to set up a support group that people can, black people Caribbean, African Caribbeans can know about Multiple Sclerosis that it doesn’t affect just white people, it affects black people as well.
That was my aim behind it. I have worked up to the point, we’re now, seven years on it’s been a registered charity. It’s going quite well although getting funding can be a strain, but we’re getting there. We’ve got two part time staff and myself, we’ve got trustees and we’re getting on alright so far, I’m quite satisfied where we’re at the moment and I must stress that we work very closely with the MS Society. And although we have a target group of African Caribbeans and ethnic minority people we don’t exclude anyone. We just had to target that group because that’s where the awareness was needed and the cultural support.
Does it have a local reach or is it, is it wider than that?
It’s a national reach because we have the telephone help line and we get people from up north, in Birmingham, Wales wherever they call from and we give emotional support. Sometimes when people call it’s not because they are just newly diagnosed it’s because they just need someone to talk to. Whatever race you are, if we’re relating to somebody who is, you just want to just offload yourself, you will just do that if you find, if you feel comfortable with the person you are speaking to, you do feel settled with them. So we have now a befriending scheme for people who are newly diagnosed We have four volunteers who they can speak to, they have the telephone helpline where they can speak to them and they both, if they’re both affected well there’ll be more to say so they can comfort each other in that area.
Louise got involved with the local MS Society as a way of trying to help her son, but she then took on a wider role to put the local branch ‘back on its feet’.
Louise got involved with the local MS Society as a way of trying to help her son, but she then took on a wider role to put the local branch ‘back on its feet’.
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Could you say a bit more about the role that you played in the MS Society?
Yes. I was actually Chair of the local branch. What happened was I was ready, I said to myself, ‘Oh, I think I’ll get involved with some voluntary work. I’m ready now.’ And it just coincided with getting a letter from the MS Society saying they were looking for someone to be Chair of the local branch. The branch had really fallen away. The Chair had left and a lot of the officers had left and it was in a really bad sate.
So I took it on and you know, everybody said, and I do know, that I did a good job by putting it back on its feet , establishing a good committee and making sure we were doing all the things that a local branch should do, getting the finances in a lot better shape because they had no money. That wasn’t just my son running marathons but, you know, the fundraising things as well.
But like a lot of these things once you become, and this is what I found in my previous job, it was very similar to my previous job, once you become a success you want to do everything really well and to keep that going and things get bigger and bigger and unless other people take on some of that load you end up, you know, really sort of collapsing under the weight a bit. And I think this is what happens with a lot of little, a lot of local branches that you have to have other people who come on that are willing to take on some of the jobs and it’s very difficult to find that. Understandably, you know, people don’t want, it’s not so much the time it’s the responsibility and knowing that you have to do things properly and competently and often people are very reluctant to take that on.
Anyway, so, I mean I did give people plenty of notice that I’d decided to go and although they wanted me to sort of perhaps take on some other role, I felt that that was the one I was interested in doing and I’d given my expertise and, you know, it was time to sort of leave and move onto other things which is what I have done.
Sarah has been a young carers representative since she was 10 years old. ‘I’ve always been very articulate in the way I speak for MS and young carers’, she says, ‘so I think people picked up on that.’
Sarah has been a young carers representative since she was 10 years old. ‘I’ve always been very articulate in the way I speak for MS and young carers’, she says, ‘so I think people picked up on that.’
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Sarah: Yeah. Well, I’ve been going to young carers’ group, it’s, since it started about 10 years now, isn’t it? I was the first to go to, it’s a British Red Cross young carers’ group locally. And I mean, through that and through the MS Society basically because I was the young carers representative on the local MS Society as well, when I was 10. I was the youngest in the UK I think, wasn’t I?
Ray: Yeah.
Sarah: Well, I still am, as far as I know.
Ray: Yeah.
Sarah: Youngest committee ...
Ray: Yeah.
Sarah: ...member they’ve had. I’ve always been vocal, I’ve always been very articulate in the way I speak for MS and young carers so I think people picked up on that. I was on the Young Carers’ Forum which was where we created ideas obviously for what we could do as young carers for activities, away trips. What maybe personally we needed. Like whether we thought some of us may have needed counselling. Not just us, but I mean, all the young carers went to the group, whether some of them may have needed counselling or even people to go into the home to help them. All, all different aspects, fundraising, everything. And with the MS Society again, I was sort of the go to, and still am really, the go to young carer locally if there is anyone that thinks they may be a young carer, or, a newly diagnosed person with children. And all these different aspects. And through that, well I got nominated for an award, didn’t I?
Ray: Hmm.
Sarah: When I was twelve, 13, 13, [laughs] And I, it was Humanitarian Citizen Award for the British Red Cross. It was they nominated quite a few of us from our group but we went down and were on a boat on the Thames at the ceremony and it was the first sort of award thing that I’d ever been to. I’ve never won anything in me life [laughs] And I was I was stood next to a lad with Down Syndrome who saved his dad’s life with first aid and CPR and things like this. I also stood next to the girl that, we were all from [county] ironically. There was people from like the very north of Scotland, and people from Northern Ireland and things like this and yet it was all three of us from [county] that that had been shortlisted. And there was a girl whose mum, I can’t remember what she had now, she’s passed away now, but her mum was really ill and she was helping look after her brother and sister as well as her mum. She was a bit older than me, wasn’t she...
Ray: Hm.
Sarah:... she was probably my age, she was probably about 17, 18. And so I won this award [laughs] and I, it was the most shocking moment of my life wasn’t it. I had no idea what I’d done, I had no idea why I’d won it. But they just they decided that with the charity stuff I’d done, looking after mum and things like this, that I deserved it. But I just, I still to this day will never understand that.
Last reviewed March 2020.
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