Interview 27

Age at interview: 70

Age at diagnosis: 68

Brief Outline: Diagnosed with secondary progressive multiple sclerosis, which has been treated with pain relief and other symptom control.

Background: Senior officer in Residential Care (retired), married, 4 children

He was given the diagnosis very brusquely but felt better when another doctor explained exactly what was wrong.

When I was first diagnosed in the hospital, a consultant, who I'm glad to say has now retired, said to me, 'Oh, we've got your diagnosis. I'm sorry, you've got a, an incurable disease and we can't treat it', now that was true but I think the doctor, the ward doctor, came back to me and when he explained it to me in detail and in drawings, I felt much happier.

Can you tell me how you would have been preferred to have been told?

As the doctor did, he sat on the side of the bed, he had a pad of plain paper and a pencil and he drew the spinal column, right, and he showed the scarring as much, as near as he could, my particular scarring. 

He explained how messages travelled and he said, 'The trouble is when they hit a scar they're delayed, they go to the next scar and they're delayed a bit further and further and further and further.' If you've only got slight scarring or very little scarring that's when it's, MS. But unfortunately I've got quite severe scarring, and so the messages are delayed quite a bit.

How do you think that information should be given?

Well, I think it should be given in the way that my present consultant has given me other news. He sits you down and he smiles at you and first of all you realise that he's on your side, he's with you and he understands you and he understands you as a person and when he tells you or gives you news, like when he gave me the final diagnosis, it was done in a way that, in fact he held my hand, you know, and he told me first of all, he built up to it, he didn't just blurt it out.

You were talking about how you feel information like that should be given?

Gently, but factually, I mean when, certainly people that like to know the facts and I'm one of them, but if they're going to be pretty dramatic then I think it's only right that they should be given to you in a very sympathetic, that's the word I think, in a sympathetic way and that you realise, as the patient, that the person giving you that information understands that you're going to have to take that, take it on board and, and come to terms with that, which for me has been very difficult because of other reasons, not that, I think it's very important the way that these things are broken.

It doesn't really matter how brave you are or how not brave you are, if you're going to have bad news of any sort, any sort of bad news, I'm sure there must be a way of, of easing it so that you can make it as gentle as you can to the person that's going to have to receive it.
 

At first he blamed everyone else for his illness, but then accepted it.

When I was diagnosed I must admit that I was frightened and didn't want to accept that this was happening to me. Me, you know. Me. I was... blamed God. I blamed my wife. Can I name God? I blamed him. I blamed everybody and everything. I blamed my mother. I blamed my father. I blamed the coalmine that I went into when I was thirteen years of age. I blamed everything and everyone. I blamed the environment. I blamed Mrs Thatcher. I still blame Mrs Thatcher. I blamed everybody.

But gradually, my own background, with the help of a very good psychologist, and the help of a very good consultant neurologist, who understands, and they were able to talk to me. They knew of my professional background, I was then being able to think of the illness, not that I knew much or very little about MS, I knew an awful lot about illness. I was able then to say, "Well yes, first of all let's accept that I'm ill, I have, I have an illness, it's nobody's blame and I'm not. I've got to stop blaming everybody. It's me, it's what's happened to me and it's something that I'm going to have to live with".

He and his doctor learnt a lot from information from the national association for multiple sclerosis.

The most information I had was from the National Association of MS [Multiple Sclerosis] in London. They, I rang them up, you know, you can ring them up anytime day or night, and I rang up and they put me through to their person who gives us this information and they sent me a pile like that, full of information. 

A lot of it way over my head because I'm not a doctor, I'm not even a nurse but I mean I was responsible for nursing. As I say a pile like that, and also a book which I gave to my doctor, describing MS ... and I got that book through the National Society, it wasn't very expensive. I read it and I thought. And I learned an awful lot from it. 

I then passed it on to my doctor who grabbed it quickly and said, 'Oh this is interesting'. And he spent all of that night reading it and I asked him, a long time ago now, and I said. "Did you get anything from that book?" 'Oh yes'. He said, 'I know more about MS now than I ever knew before, because it broke it down into layman's language".  

So I think information is vital because the more information you get and the more knowledge you have as a patient, the more you know that you don't have to be frightened of it. You don't have to be frightened of it.
 

He expresses anger and frustration because he can't do things for himself.

But anger yes, I get extremely angry and frustrated but it's anger with me and frustration. I mean I'm sat in this chair, now if I want something I've got to ask my wife, would you mind, would you pass me an apple or a cup of tea and I drink gallons of tea and the poor woman is in and out. 

I feel guilty about that and I get very angry. I think to myself why the hell can't I do that? You know, I should be able to do that, but I know I can't because I'd be on the floor and that would make things much worse.  

So anger is something that I think comes in the package but it's frustration as much as anger. Both perhaps.  

When I said to the consultant that I was very angry, his answer was, 'Well I can understand that'. They all understand my anger but it doesn't help it.

His wife, who is a trained nurse, gave him nursing care and emotional support.

You were saying that your wife gives you a lot of emotional support?

Oh absolutely yes, and that is... I mean again... I have to say I'm very fortunate with my wife as not only is she an excellent carer but she has a very good understanding because of her own profession, she has a very good understanding how I feel and of course we've been married for forty-nine years so she recognises that, by looking at me. 

I mean some mornings I know she gets a bit worried because some days I look... my... I go yellow and all sorts of things so I'm fortunate, I have someone living with me who cares for me very very much anyway but who also recognises my needs. 

All I wish is that she would accept a bit more physical support, from outside, but I'm afraid she won't.

Can you tell me the kind of things she had to do to care for you. I know you said she's got a nursing background so that gives her extra skills, but supposing she hadn't got a nursing background would someone in her position be able to cope?

With difficulty because there are certain things for example because I am chair fast I would very quickly develop bed sores, very quickly. Heels, bottom, shoulders. But my wife is very well aware of those problems so the district nurse that comes to see me is amazed [by] the condition of my body, but then she knows and she says, “Well it's good because I've got some patients who have got lovely carers but just got no idea about massaging and oils and different ointments” and I've never actually suffered with any of those things.

I had the beginnings of a sore bottom a couple of weeks ago but my wife then put extra effort. She put extra effort into that and it's cleared up and I'm very comfortable now. But anybody like me definitely will need that kind of help. Now the way to get that, I just mentioned the district nurse, and again they might have to insist on it and that is for the carer or the patient or both, through their GP to insist that they get a nurse in at least once a day and it needs doing at least once a day to give a proper massage of the points that are mostly in contact with the bed or the chair or whatever. 

Without that then a patient will very soon become very ill because a lot of terminal people become terminal a lot faster because the nursing care isn't to the standard it should be.

Suggests that a person living alone might find support and friendship through the local vicar or minister.

What thoughts have you got about people who are at the opposite end of that spectrum who haven't got much support, who are on their own?

Well, first of all, of course I feel very sorry for anyone in that situation but they needn't be alone. I understand how they feel. Alone, of course they, you do, but they needn't do that because if they can... if they have the use of a telephone for example and if they have knowledge of who to ring, and as I said earlier the first port of call is the Social Services and there are certain legal obligations in the Social Services, right? 

And they should then go to that person, man, female, lady, patient who has rung and they should have a discussion with that person and then they should carry out an assessment and the assessment should be on the needs of that person, not on the illness but the needs that the illness has created and if they do that properly then they will introduce carers. 

They will introduce... well it's called a 'Package'. They will create a Package, but outside of that package, a good person to talk to is the local minister or vicar if you've got a good vicar or a good minister. They will arrange visitors. Very important because these visitors that they will be bringing to you aren't bible clapping visitors, they are nice people who want to befriend you and want to help you, so you can increase your circle but you, if you're on your own in those circumstances you have to make the moves because they don't know you exist.
 

Says carers must insist that they are entitled to help from social services.

At the moment my wife insists that she can manage but then I have a lot of support from other places which enables her to manage. But without a close family or friends then a carer can be very isolated and find that she can't cope, or he can't cope and I do know of people that that has happened to. Their partners have become ill and they haven't known where to go for help. There's been no immediate family. There's been nowhere to go and as a result they themselves either become ill or the sick partner have had to go into some sort of accommodation before perhaps it would have been necessary.

Now that is very sad but that does happen so it is important that if you suffer with any illness, but MS and you have, you don't have the help that you require, that there are ways that you can get it and the first port of call should be the Social Services office in your area. Now some of them are very slow and they try to delay things. You have to be able and be prepared as a carer to push and to insist that you are entitled to help because care in the community is supposed to be the modern concept so go for it and insist that you get the help you need.

Do you think that your wife gets enough support as a carer or are there gaps to be filled?

There are gaps, but I have to, we have to accept a responsibility for that ourselves. I would like to see my wife having for example someone to do a bit of domestic work, because my wife is eighty odd and I don't want to see her driving herself into the ground and I sometimes get very guilty about it and I do. For example if I'm sat in my chair and not in my wheelchair, if I want anything at all I have to turn to my carer who is my wife. Care is very very important.

Describes his experience of excruciating pain.

The situation for me at this present moment is that there is no treatment for multiple sclerosis but there is a lot of treatment for its effects. Like the heart. Saying that... the heart... they treat me very well, I take drugs for my heart. 

The excruciating pain I hadn't mentioned that before, but I am now at this moment in my life. I get excruciating pain. I can't really explain. It's as if all my muscles are being electrocuted, that's the best way to explain it, and sometimes when I'm in bed I lay down and I burn as if I'm burning from inside out and yet the feel of my body is cold. Other times I can be perspiring and my lower half of my body is burning. 

Thinks that pressure should be put on parliament to change the law on euthanasia.

We were talking about the national debate on euthanasia policy and assisted suicide and you said you had an opinion about that?

Yes I do. Yes I have a strong opinion about that. First of all I believe that it is everybody's right to die as it is their right to live. Now there comes a time I'm sure in my own mind that a person, providing they are in their right mind when they decide, not when it perhaps happens but when they decide, has the right to die.

Now I would like to think that if something happens to me that I become completely incapable of enjoying life then I would want someone to do to me what they would do to any ordinary animal. They would if it was a dog and it was suffering and in pain and couldn't be a dog anymore, you would say 'oh pity' and you would take the dog to the vet. I would hope that I could be taken to a doctor or the doctor would come to me, or would be allowed to and would be able to just put me to sleep, because I think life is only tolerable if you're alive. 

Now what is being alive, now you know, what is being alive? Being alive, for example, being alive is being, for me, is being me. When I'm no longer me what am I? I'm a vegetable and I don't want to be that I don't want to be here when that happens. We've got to bring pressure on our members of parliament. Maybe not individually because we haven't got the effort or we don't like feel like it, but our various... like I belong to the local MS society. 

I belong to the national MS society, we should bring pressure on them to bring pressure in making it law because, it's not right for everybody, I understand that, that's why I say it could only be done by someone when they're in their right mind and once they've done that they obviously knew what they were doing and what they were thinking but there are people, I suppose people with strong Christian conviction, convictions who believe that's wrong.I understand that and if that's what they want but I hate this. It's not very pleasant seeing someone dying and they've got two or three days left to live and they're dying in utter pain and even the strongest painkiller's not touching them. Through their unconsciousness they're suffering and you can't and you're just keeping them three days longer, a week longer and what are they doing, they're suffering, terrible.