Can you say a bit more about what makes a good GP, for you?

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

So shes great. Shell talk. She comes, does home visits, which is, I think, quite rare these days, not often but if theres 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 shes 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 shes just good because she shes 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 theres a good link between them all and, yeah, and I think shes quite open minded. Shes encouraged, there was some kind of, as I said, a drugs trial, shed encouraged that and has certainly phoned up and arranged for physiotherapy and that kind of issue if required.

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

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

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

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

But I wouldn’t say that that is typical all over this country. In fact, I would say far from it. From the people I’ve met, some haven’t even got MS nurses. In fact, we never actually had, we used to go to the local hospital here, we have to go 12 mile away to see a neurologist now because they never had one up here. He retired and he was never replaced. I believe now that someone has actually taken up the post. But for three years weve 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].

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

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

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

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

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

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

So we changed GP, at that point, we went to another GP. Which one friend of ours, of ours used to go to and he said he was pretty normal. We went there, we told what happened. Immediately he sent it to the neuro-ophthalmologist.

At the local hospital when we were focusing on her eye we weren’t particularly happy so I asked that all the appointments were moved to the specialist local hospital and since weve gone there [name]’s been much happier, my daughter’s been much happier and I’ve been much happier with the consultants that when weve seen them and they have a specialism around MS. the last consultant we saw was just great, the way he spoke to her and interacted with her was just so good and he made her feel that she wasn’t wasting his time because she, she, you know, she won’t be the most severe patient that they see, but he really, really helped her to see that, you know, you keep it here and you’re doing really well and that’s what I want to see I don’t want to see you coming back here because you’ve had another episode I just want you to come back and say how are you doing, how’s things been. And for a consultant to sort of talk to a 22 year old like that really made her feel an equal whereas maybe one or two of the other consultants had almost been treating her as a child that didn’t go down very well because then she starts acting like a child.

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

Right. My consultant suggested I went to see the neuro-psychologist. Shes 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 shes brilliant and yeah, absolutely brilliant.

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

The going, yes, going to counselling I, I can really recommend. Because even if you’re, you’re going to counselling to talk to, and it’s not about bereavement, but you, you can be mourning for the person that, that has been diagnosed with MS and, and how they react and the behaviours as a result of having MS. Theres definitely a personality, theres 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. Were not, were 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 hes 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.

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

And as I say find out if you know where your social services department are and ring them up and explain what your problem is, ask them to come along and have a look at your wife and they’ll even do an assessment on all your wifes 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, theres always a way out apart from the final analysis of course where there is no way out for any of us.

You talked about carers coming in and referred to some ‘run-ins’ with Social Services around all that. Could you say a bit about that process?

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

And I found them just dismissive of, really, the issues. Everything on the surface may seem fine, and I know were 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?’

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

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

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

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

One or two occasions but things like that they wasn’t sort of lasting, it wasn’t anything that you could build on. I think if you were that way inclined you could, because I know theres 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 wed really want to do because we do go out on occasions together and were 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.

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

But people in Mutual Support are wonderful. They are supportive; for instance, Trish fell over in March of this year, six months ago, and broke the head of her femur. Well, I was getting people ringing me up saying anything we can help, this that and the other, besides our own circle of friends. Having people like that in the background doing it for you, that’s it. We only meet twice a year but we have a three day weekend at some hotel somewhere and we thoroughly enjoy it. Talks, often a lot of beer or wine but it’s a good fun, we all can relax and enjoy each other and enjoy that.

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