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Bernard

Age at interview: 59
Brief Outline: Bernard's wife was diagnosed with MS at the age of 43. Her mobility has declined over the years, but they still share household tasks.
Background: Bernard is 59 years old and planning to retire soon from his job as a secondary school teacher. He is white British and has two adult children. Bernard is looking forward to spending more time with his wife when he retires.

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Bernard talks about the onset of his wife’s symptoms, remembering the changes in sensation that she experienced, on holiday in the Lake District, which led to a GP consultation and a fairly rapid diagnosis because the GP was experienced in neurological conditions. Bernard’s wife retired from teaching about a year after the diagnosis, though she continued with some part-time work for a while. Her mobility has declined progressively over time, despite ten years of treatment with Betaferon. Bernard talks in some detail about having to ‘push and shove’ to get this treatment, by writing to the consultant and supplying him with an article from the Lancet, that they found on the internet, which argued that all people with MS would benefit from the treatment. Now, the remissions are fewer (‘hardly noticeable’) and her mobility is less, but they still share household tasks and also have in common a positive attitude to living with MS, facing up to it as a fact in their lives which is not going to go away. Bernard speculates on the effect of their shared Christian faith on supporting this attitude of acceptance.

A variety of appliances and allowances have helped to support mobility over the years including a bed guard, indoor walkers, a wheelchair and scooter for outdoor use. Bernard talks about the inconsideration some people show towards wheelchair users in crowded shopping spaces. He also talks, by contrast, of the help given by airlines and airport staff when they have been on holiday abroad with the wheelchair or scooter; and of the concern and understanding shown by the children he teaches.

Bernard concludes by saying that ‘if you have got a friend or a relative who’s got MS, the thing to do is to be as supportive for them as possible, and to help them live their life as fully as they were living it before.’ He acknowledges that this might involve sacrifice and that, while it’s ‘easy to say this,’ the thing to do is to ‘accept that the condition isn’t going to get better, but it might not deteriorate too rapidly, too fast, and it’s still liveable for the time being.’
 

Bernard found an article in the Lancet which supported his view that his wife might benefit from Betaferon. The consultant agreed and she appeared to benefit from this treatment for ten years.

Bernard found an article in the Lancet which supported his view that his wife might benefit from Betaferon. The consultant agreed and she appeared to benefit from this treatment for ten years.

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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 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 recognised 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. 
 

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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Could you tell me a bit more about your role in approaching the consultant in terms of the treatment? You talked about writing to the consultant. Just talk me through what you did to make that happen?

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.
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