In New York

In New York

Tuesday, 22 June 2010

So yesterday, Roch and I went to the Houses of Parliament, as two of the representatives of our local branch of the MND Association. We joined representatives from branches all over the country at a Parliamentary Reception, held in the Members' Dining Room. The purpose of the Reception was to lobby Parliamentarians on a National Strategy for MND. Before the Reception, the Petition (with over 16,000 signatures) was handed in at No. 10. Not enough Parliamentarians showed up I thought, but we did speak to some very interesting people and it was a privilege to be there. Chris Woodhead (former Chief Inspector of Schools, under John Major's Government - and retained in post by the Blair Government - not universally popular) was one of those at No. 10, and later, his was the most memorable of the speeches. There was a special significance for us in meeting Chris Woodhead, and in being present to hear that speech.

In April last year, Chris Woodhead wrote an article for The Daily Mail, in which he spoke about being diagnosed with Motor Neurone Disease, and the symptoms he had experienced in the months before his diagnosis. The tone of the article was not hopeful. He spoke of thoughts he had had of ending his life. At that time, Roch had been for a series of medical tests and we were waiting for the next appointment with the neurologist. One day, Roch came to me with that article, having picked up a free copy of The Mail at the gym, and simply said, 'Read this.' So I did. Every symptom matched Roch's. We didn't speak about it again, until weeks after we knew the truth. Then we acknowledged to each other that in fact, that article had prepared us for the news. Although it did come as something of a shock, it was not entirely unexpected.

So it felt strange to meet him and to hear him speak. His speech was very powerful - beautifully written and constructed and delivered with humour and passion. He is confined to a wheelchair now, and his arms and hands are affected, but he can still talk. Although the statistics show that 50% of people diagnosed with MND die within 14 months of diagnosis, he is conscious that he has beaten these odds (incidentally, as you know, in two months, we can say the same of Roch). He said that Motor Neurone Disease is merciful in three ways. Firstly, because it gives you, (the sufferer) a chance to adjust to each change as it happens, secondly because it allows you to experience everything with an intensity only given to those who know their time is limited and thirdly, because it gives you the chance to say goodbye to those you love. ( As he said this, I noticed a woman standing near us. Her eyes filled and she set down her glass and left the room. I wondered who she had had to say goodbye to. I saw her later in the House of Commons shop, helping her colleague to choose teddy bear key rings, but I could tell her heart wasn't in it).

He said if someone had told him last year that he would be sitting in his wheelchair in his garden in Devon, feeling contentment, he would not have believed them. He told us that if it had not been for the loving way in which his wife cared for him, he would be dead. It was very moving. He urged those Parliamentarians present to work for a National Strategy for MND, to ensure an equitable and consistent service across the country for sufferers in life and in death, that national guidelines for health professionals are put in place. That existing NHS funds can be used for this. That bad care costs more than good care. These were the messages we were all there to lobby for, I was just sorry there weren't more Parliamentarians present to hear Chris Woodhead deliver them with such a personal intensity.

Afterwards, we slowly made our way to the South Bank and had a meal out. There were two people at the next table, having some kind of business meeting. At one point the woman's male companion remarked that he had once had occasion to meet Chris Woodhead. Roch and I immediately ceased our conversation to listen (it wasn't hard to hear what they were saying). They agreed that he was 'a plonker' and then the woman said 'Of course, he's terribly ill now.' I felt that we really should say something. I felt we owed it to the man we had heard speak so movingly on the issue closest to our hearts and I said as much to Roch. Roch shook his head and just as I was trying to decide what pithy comment I could make as we left, Roch turned to them and interrupted their conversation. He apologised and admitted that he, too, had thought Chris Woodhead was a plonker when he was Chief Inspector of Schools...but he explained where we had been and why and how impressed we had been by him. I don't know what they made of us. I know I was disappointed that they didn't have the added embarrassment of seeing Roch limp past them with the stick, as they left before we did. But you can't have everything and it had been a satisfactory day, all told.

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