The Oxford MND Centre

I've often referred to our excellent MND Care Centre in Oxford. It's based in the West Wing of the JR Hospital and the Centre of Enablement at the Nuffield. About a month ago I had my annual check-up there, seeing both the consultant, Professor Kevin Talbot, and the OT, Jenny Rolfe. The beauty of the place is its humanity and its flexibility. Once you're signed in, you're met by a real person, rather like cabin crew on a plane, but it's someone who has first-hand experience in caring for a person with MND, and they keep you informed about who you are going to see, how long you might have to wait (usually not long), who you'll see next and so on. It's so much better than the impersonal announcement over a tannoy or that annoying digital pinging display summoning you to a consulting room. The MND Centre's air hostesses are all volunteers - so valuable.

Mark Stone in the sort of wheelchair I hope to get

Anyway there are two points to this story. One is that talking to Jenny about fitting hoists to get electric wheelchairs into the boot of our car, she was anxious for me not to have an unsuitable hand-me-on chair and recommended a proper neuro-wheelchair with a folding back, which are now being made. She subsequently came out with an engineer to show me the possibilities. I'm now in the process of choosing and looking forward to Jane not having to lug my manual wheelchair in and out - and not having to push me whenever we're away from home.

The cyclists with the reception party outside the hospital (Photos: Lesley Ogden)

The other point is that we then learned about the sponsored cycle ride being done by the Centre's nurse, Rachael, the two consultants and a physio. They started off from the MNDA headquarters in Northampton and went via the centres in Milton Keynes, Aylesbury, Reading, Swindon ending in Oxford - a total of 170 miles, including a gruelling section along the ancient drovers' road, the Ridgeway. Since we'd been the recipients of a generous gift of tickets to Wimbledon, we felt the least we could do was to sponsor them - apart from the fact that we are continually grateful for the care I receive from the MNDA and the NHS. So far they have exceeded their target but just in case here's the Just Giving link. In fact we joined a group to welcome them back at Sunday lunchtime in front of the JR's West Wing. Quite an achievement! And they'd be back in clinic the next day. "Dedication is what you need," as Mr Akabusi used to say.

A rather good meeting

Prof Kevin Talbot

This afternoon we went to our local MNDA meeting. It was in the Peartree Holiday Inn - and there were a lot of us there. The main meat of the afternoon was feedback from Professor Kevin Talbot, the boss of Oxford's MND Centre about the research going on there. As usual he was very clear for us lay folk about very technical matters. The thing that made me most sit up was the fact that now he is involved with the three largest pharmaceutical companies. As I understand it this is because he feels research has now reached the stage where the drug companies' vast libraries of experimental drugs might usefully be tried on MND-affected stem-cells. Members of his team are now producing sufficient of the latter to try "treating" them, the cells. He told us that, though he believed a cure would be found one day, there was a long way to go yet and it was impossible to predict.

Something else he told us was that the specialist nurse who runs the clinic, Rachel Marsden, and the specialist OT, Jenny Rolfe, the country's expert on wheelchairs for neurological patients, have been appointed to NICE's (National Institute for Health and Care Excellence) advisory panel on MND. I reflected again on how blessed I am to have this Care Centre monitoring my condition.

Jenny Rolfe

Jenny herself reported on the International MND Symposium of last December, which happened in Milan. She concentrated on the care side, such as improving non-invasive ventilation, the evidence of the pros and cons of different direct feeding methods, the devising of an optimum powered wheelchair for people with MND - the Neuro Powered Wheelchair. Judging from my experience there can be no one better than Jenny to know exactly what's needed. One thing she mentioned - which clearly appealed to a lot of others - was the Cuddle Chair, a riser-recliner sofa, designed so that the MND person could have two armrests, essential for standing up, but also can sit with someone, rather than always in isolation. I looked it up on the internet when I got home (Wealden Rehab Kent); ominously there's no price. But it would be nice....