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.

1st National PLS Study Day

 Photo: Tripadvisor

There are a handful of us in Oxfordshire who have Primary Lateral Sclerosis, the slowest and rarest type of MND, and, I suppose, there's an equally sparse distribution nationwide. In fact its pathology, the way it develops, is so unusual that the experts aren’t agreed on whether it is truly a type of MND or an entirely separate condition. Anyway, that means that it is a Cinderella of MND research. In Oxford we are lucky to have a concentration of MND expertise, that PLS is not neglected, and is a hub for understanding the condition. I believe the idea of PLS Study Day originated with Professor Martin Turner; it was certainly organised by the Oxford MND Centre.

So on Friday 23^rd October about 120 of us – professionals, researchers, carers and people with PLS – gathered at the Oxford Spires Four Pillars Hotel on the Abingdon Road, to hear mercifully short presentations from our home team and from some “away” experts. “Mercifully” – not because they were boring, far from it, but because my attention span is limited. We heard about the characteristics of PLS – that was reassuring as I learned I wasn’t such a freak after all, but rather my symptoms and the way they progressed were pretty characteristic; we heard about what MRI and MEG scanning showed up, and a bit about genetics. What was most obvious was that a lot of very sharp minds were focused on the condition.

After a rather good lunch and the keynote lecture given by Dr Mary-Kay Floeter, the world’s leading specialist in PLS, based in Maryland, USA, which was brilliant, the focus switched from research to management, and again the home team led in this. It was informative, practical and helpful. All was well until Rachael Marsden, the Centre Coordinator, talked about a new smart phone app called Sex Diary, of which she showed a discreetly blank screen. As is the way with PLS, the collective risible nerve was tickled and only with difficulty pacified. Both the morning and afternoon sessions ended with patients’ questions answered by a panel of the experts.

It was an exceedingly good day, not least because of the opportunity to meet many others with the same condition with similar but different stories to tell. As we all know it helps to know that you’re not alone; and it helped to have explained what’s happening inside us. It was also brilliant to discover how many people are interested enough to devote their lives to studying the disease and to caring for us.

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.