MND matters

Quite a full seven days to do with MND inter al for us. 

We drove to London on 16^th under a red sun and a livid sky. It was weirdly beautiful. That evening we shared a great mixed meze at Galata Pera (http://www.galatapera.co.uk/), a Turkish restaurant by the river in Brentford, with a long-standing friend. It was the best meal I’ve enjoyed in London (except the one cooked for me by my then girl-friend many years ago!). The next morning we made our way to the QEII Centre in Westminster where there was to be an APPG (All Party Parliamentary Group) and MNDA (Motor Neurone Disease Association) Reception. But before that we shared a drink with the admirable Vicky Beeching (https://vickybeeching.com/). She is one of the bravest women I have ever met – and I have met many of them. She is gentle and strong, and full of integrity. The abuse and trolling when she came out was without understanding, compassion or excuse.

With Vicky Beeching at the QEII Centre

Then it was upstairs to the Parliamentary Reception, which was a very moving experience. The sandwiches were nice, but the meat of the event were the keynote speeches and the conversations with MPs. The speeches were given by Chris Evans MP who is an officer of the APPG on MND, Rob Owen who is living with MND, TV Presenter and MND Association Patron Charlotte Hawkins, and Penny Mordaunt MP, Minister for Disabled People, Work and Health. Undoubtedly the most impressive were those given by Rob Owen and Charlotte Hawkins.

Rob Owen talked about his experience of applying for PIP (Personal Independence Payment), the benefit granted to people with extra financial demands from ill-health and disability. In brief he was first assessed by a health professional who understood his needs. Later he was called for reassessment, which was carried out this time by a non-professional – and his monthly payment was reduced. Nonsensical since MND is an untreatable degenerative disease. When he queried it, he was again treated to an amateur tick-box assessment and had his payment removed entirely. It was only by formally appealing to a panel including a magistrate and a medic that he was given the maximum amount of PIP – backdated to the beginning. What a waste of nervous energy and taxpayers’ money!

With Charlotte Hawkins

Charlotte Hawkins talked from the point of view of family, and painted a vivid picture of watching someone you love die from MND; as she put it, seeing the person you love disappear before your eyes. Her father died in 2015. She moved us all and opened MPs’ eyes to the reality of the disease. (You can hear the speeches here: MNDA Parliamentary Reception).

With Robert Courts MP

Sadly only one of the six Oxfordshire MPs came to the reception. Indeed although I had sent a personal invitation to my local MP, I did not receive so much as an apology – simply a proforma bit of party-political spiel about how much the government cares about conditions like MND… a week after the event. You might tell I’m not overly impressed! However, at least, new MP, Robert Courts, from Witney was there, and listened and was concerned.

The focus of the reception was to inform parliamentarians both about the disease and its costs – and how important it is that people who have it receive the support they need WHEN they need it, which in the vast majority of cases is very quickly as the disease so rapidly removes your independence. And of course how unnecessary reassessment is with a progressive degenerative disease, assuming it’s been correctly carried out in the first place.

And so back home – and this week. On Tuesday Jane forewent her usual gym class so that we could attend my fourth and final meeting of the Oxford MND Care Centre Steering Group. I’ve been the patient representative. I’ve said often how excellent the Centre here is. We have two top-rate consultants (who happen also to be professors), a specialist nurse (who coordinates the show), an OT (who is the country’s expert on wheelchairs for neurological patients) plus access to specialist physios and respiratory nurses. The local MNDA branch also supplies volunteers who welcome you and make sure you know what’s going on and who to see when. Part of the meeting was devoted to an audit which, I think, the Centre has to do in order to continue to be recognised (and supported) by the MNDA. There’s a danger, it seems to me, of extending the already pervasive evil culture of performance indicators. The Oxford Centre is always working at improving and being responsive to patients’ needs. It doesn’t need to waste its health professionals’ time in filling out tick boxes and sending out questionnaires.

The Association faces the understandable dilemma of not wanting to fund what should be statutory provisions, such as nurses or dieticians, and yet there are charities which successfully augment the NHS – such as Macmillan Care, Marie Curie and many others. The MNDA is comparatively well supported with an income of £17,391,000 in the 11 months up to December last year. The staff (189 of them) cost £6,268,000, for whom private medical insurance (!) was £43,000. I wonder if they could fund some hospice beds or nursing home rooms – or even adapted holiday places. Don’t get me wrong; the MNDA is a very effective charity and does a great deal of good for us, particularly at the local level. I wonder if it just might be a tad top-heavy.