In New York

In New York

Sunday, 4 December 2011

Incurable Optimism Exhibition

At last I get a chance to report on this! Helen - just to say the exhibition was only open to MPs and Peers - I'm sure if you had wanted to come to the Reception, it would just have been a matter of contacting the MND Association directly - but I know this comes too late!

The Exhibition was amazing. All week MPs and Peers were able to view Patrick's portraits in the Upper Waiting Gallery in the House of Commons. It's a bit of a thoroughfare, on the way to Committee rooms, so a lot of people were in a bit of a rush to get through, and didn't have time to stop, but hopefully enough did find time to stop and take it all in.

Unfortunately, Patrick himself was unable to attend the Reception and was sorely missed.

The Reception on Wednesday went well, I thought - lots of MPs and Peers were present (see link to find out who came along)  )

to listen to Gavin Williamson MP (Chair of the All Party Parliamentary Group on MND) give a passionate and articulate speech about the Incurable Optimism Campaign and the work of the MND Association. Let's hope those present listened to his plea for support. Several people spoke, among them Andy Burnham MP, former Secretary of State for Health, who assured us that our voices would be heard and reminded us that his colleague, MP Kevin Hughes, worked and lived with MND before his death in 2006, so the House had witnessed the devastating effects of the disease first hand.

But the most powerful speech came from Alistair Banks, who has taken on the mantle of fronting the Incurable Optimism Campaign. Alistair is a musician and, inspired by Patrick's story, pledged himself to record an album before losing the use of his hands. He has done it! The album will be released in time for Christmas. Find out more about Alistair here

Alistair talked about the 'postcode lottery' and gave a stark example, explaining how in Somerset, where he lives, a motorised wheelchair was provided for him - but a few miles away, across the border in Wiltshire a person living with MND was told he would have to buy it himself. Prohibitive for most people. Fortunately, in the instance he spoke of, the MND Association provided a motorised wheelchair - yet again, a Charity providing a service which should come from Government.

There were lots of familiar faces there - the wonderful Julia Franklin, Association Visitor and Optimist extraordinaire (her portrait was one of those painted by Patrick). Here we are with Roy, who treated me to a personal serenade, very sweetly sung "Have I told you lately that I love you..."
Thank you Roy. I rather think that made my evening.

Liam Dwyer was there, with his lovely wife Anna and I was delighted to meet Sarah Ezekiel at last (her portrait is also one of the 18). It was a shame that Roch couldn't be there too, but he wasn't feeling up to it on the day. Everyone missed him.

It's always a privilege to be at the House of Commons and I count myself lucky to have visited several times now. You can see Patrick's portraits here:


  1. Hi Deirdre, with regard to the postcode lottery about the lack of provision of an electric wheelchair in Wiltshire, I'd just like to say that our experience has been completely different. We live in West Wilshire and were told at our first meeting with the wheelchair service that the diagnosis of MND meant that my partner went to the head of the queue and would be fast-tracked to have an electric wheelchair. He originally opted for a self-propelled manual wheelchair but when that was no longer practicable we phoned and requested a review for an electric one. He was assessed and measured the following week and his electric chair was delivered two weeks later. We also know that when he find it difficult to support his head, etc, we can have a chair which reclines for comfort. It has been excellent service throughout.

  2. Hi Deirdre - thanks for the update on the exhibition!

    Bedfordshire's wheelchair services are hopeless. In fact, 3 years after diagnosis we've got our first assessment on Monday!

    Apparently it's not possible for them to come to home to do the assessment - oh no. So we've got to trek halfway across the county with his indoor chair so they can see him in their clinic.

    Let's hope it's not another 3 years before they offer anything useful...