Long-term?

Yesterday afternoon we had another MND Association meeting, this time going round the gardens at Waterperry House just outside Oxford. For all their new-agey philosophy they know their onions and their herbaceous borders. Here's our friend Jan beside the latter. It was only a year ago that we were going round Waddesdon Manor gardens with Jan and John, her husband. He was facing the most aggressive MND, and in fact died in November last year. He had great courage and faith. He's one of the people to whom I made my dedication for I Choose Everything. His daughter, Joanne, is doing the Great North Run in his memory in September, in aid of the MNDA of course. You can sponsor her on www.justgiving.com/forpops

We came across this rather magnificent ornamental thistle just round the corner. I guess it's seven or eight feet high. Jan, being taller than Jane, kindly took this picture for me with the bee at work on it. Then we retired to the tea shop where we met up with all the others who'd been wandering round the gardens themselves. Had a good piece of coffee-cake with my tea - though not up to Cornerstone on quality and more expensive!

Second from the left is Barbara, who went to Parliament with us about the National Strategy. In fact all four of us were there again and compared notes. Jane and Barbara were disappointed at the low turn-out of MPs, but Jane and I were a bit more sanguine that it might have done some good. However I've since discovered they were probably nearer the mark than us. On the right is Lesley Ogden, the very efficient and hard-working branch secretary, who is typical of the really nice (sorry, teacher!) helpers and visitors.

The official government response to asking for a National Strategy for MND appears to be to refer to the National Service Framework for Long-term conditions. I looked it up on the Department of Health's website, wondering what I'd find. It has an introduction by the Secretary of State, no less - John Reid!! Remember him? Yes, it's from 10th March 2005. What's it about? "This NSF sets 11 quality requirements to transform the way health and social care services support people with long-term neurological conditions to live as independently as possible. Although the NSF focuses on people with long-term neurological conditions, much of the guidance it offers can apply to anyone living with a long-term condition." And it made a commitment for implementation in 10 years. Now the new government is committed to its implementation 'over 10 years', I gather. That sounds like 5 years slippage. The point of the MND National Strategy was to make sure that GPs and care professionals are clued up on diagnosis and care for a disease which on average takes 14 months to diagnose and from diagnosis to death averages 17 months. 'Long-term neurological condition'? Come on - most MND patients die within a year and a half of diagnosis! Another 10 years sorting things out is cold comfort for them. Usually it's a rapid disease. I'm not typical. Neither is Stephen Hawkin. We actually do need a strategy. I do hope someone in government is reading and thinking about it. Long-term condition? Hardly ever. Long-term problem? Yes. And immediate challenge.