Well I do have a home help now on weekday mornings, through social services. For years nobody even told me I could get incapacity benefit. We were struggling so hard. Nobody had told me, not my GP, not the health professionals at the hospital, nurses, social workers, nobody, that I could get state benefits because I wasn’t able to work, I was so poorly. So I’d had the disease for about four or five years before I filled in the forms and started getting benefit. But it was a friend who was a health visitor who asked me one day, ‘Are you getting incapacity benefit?’ and no I wasn’t ‘cos I didn’t even know about it. And the help I have in the house now, that has been a real lifeline;

What I think is not always taken into consideration is that people are very anxious when they go to a rheumatology clinic or whatever, and however hard you try to listen, I think people forget what they’ve been told sometimes. And recently I’ve been to a hospital, which I was extremely impressed by, because on my initial consultation with a surgeon, I was given the name and a telephone number and hours that I could contact a member of his team, a nurse on his team. So that when I got home, and I thought to myself, what did he say about that? How long was it? What would I be doing after I’d had the operation? I had a, a name and a telephone number and days that this person worked and the hours that I could ring and I thought that was fantastic. I don’t, for me I probably wouldn’t need it, but there are lots of people that I think need that sort of service ‘cos you’re obviously anxious when you go;

The good thing about going to the neurologist is that there are, you’re probably aware, a number of care centres around the country. I think it’s up to 15 now, or will be soon, where MND patients are encouraged to go. And it basically provides a number of services under the one roof which you can visit, well, on the same day, for example occupational therapist, physiotherapist, nutritionist, and the neurologist themselves. And rather than go piecemeal to Social Services or wherever, you can go to the care centre and if you obviously let them know what your interests are or what help you’re looking for then you can prime them as to what matters you want to discuss and what help you think you need. In some ways the care centre I go to, it’s like an extra GP, if Ive got a problem that something doesnt seem to be right.

I had something about six months ago and I just wondered at it, and so I sent an e-mail off to the neurologist. And he replied that to the best of his knowledge the symptoms I was showing was nothing to do with motor neurone disease and he suggested I went to my GP. And that all took only a few days and it was nice to get that sort of informal diagnosis – not diagnosis – yes, diagnosis. But in the end I didnt go to the GP because the symptoms disappeared and the neurologist had said that, If it goes away then don’t worry about it. Well, no – You can go and have a, if you want to be certain, you can go and have a, go to the GP and have some tests, and otherwise up to me whether I do anything about it or not. And I decided not and it hasnt happened since, so I’m unconcerned.

So having all the services together at one place is helpful. That’s what you’re saying?

Yes. So it’s a deliberate policy on behalf of the MND Association to try and get these care centres around the country, as many as possible. Again in my case turning up at the neurologist once a year is not particularly beneficial to myself or to them, especially as I use e-mail to discuss things if I need to. Ive also found the local Social Services, occupational therapist and physios to be very good and very responsive.