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.

A book worth waiting for

Tanya Marlow, Those who Wait  2017

For an evangelical (i.e. Bible-believing) Christian to confess that the Bible no longer excites and delights him sounds like heresy. However, I suspect I am not alone among my generation in feeling that way. We read it (or even study it occasionally) out of duty or habit, but it doesn’t feel “living and active”, as we are told it is. It has become over-familiar. We know the stories and the lessons well; we have after all heard them or read them often over the years, and we or they have become jaded. It is only the exceptional teacher or preacher who revives its immediacy for us.

Tanya Marlow is one of those exceptional teachers. Sadly we are denied listening to her as she has suffered from myalgic encephalomyelitis for over twenty years and been largely confined to her bed for the last seven of them. (See Tanya Marlow talking about ME.) However she writes a blog called “Thorns and Gold” (Tanya's website and blog), and has written a downloadable book. Now she has written Those who Wait (Malcolm Down Publishing, £9.99), which looks at four characters in the Bible and their experience of waiting: Sarah, Isaiah, John the Baptist and Mary. What Tanya does is imagine them telling their own stories. However her retelling is always backed up with scholarship, the book ending with discussion about the theological and historical issues involved on the way. Each character’s story is told in five short chapters, with pauses for reflection after each. Finally there is a section entitled, “The God who waits”, reminding us that we are not alone in the experience of waiting.

I think this is a brilliant book. For one thing it’s multi-purpose! You can use it for personal devotion; you can use it in group studies; a church fellowship could use it for Advent (you might detect the characters follow an Advent pattern, beginning with the patriarchs and prophets). Mainly it’s brilliant in the way it shines light on the Bible narrative, reminding us that it’s about God’s interaction with people like us and their reaction to him in their own struggles with life. Tanya Marlow shows us, not only does the Bible engage with real people, but through it we can find a God who’s concerned with the issues where the rubber hits the road. The section headings illustrate this: “Sarah’s story – Dealing with Disappointment; Waiting for Joy”, “Isaiah’s story – Dealing with Delay; Waiting for Peace”, “John the Baptist’s story – Dealing with Doubt; Waiting for Justice”, “Mary’s story – Dealing with Disgrace; Waiting for Jesus”. If you’ve never been troubled by any of those eight concerns, the book will probably be of only academic interest to you; but if you recognise them, this book will encourage you that you’re not alone, and that you’ve not been forgotten by the Comforter who caused the stories to be written in the first place.

I’ve read quite few Lent and Advent books over the years. This is quite the most readable and exciting I’ve come across. I loved the way it reengaged me with the Bible by quite unexpected roads. I especially liked the Celtic-like blessings after each character’s section, such as this:

“May you who are cloaked in and choked by cynicism

Be broken by the grace of God.

May you who are in hiding

Find God’s hands held out to you

As an open invitation of love.

May you see God’s face when it all feels too late,

And may you encounter the God who sees you, knows you, loves you still.


Amen.”

I suspect that this vibrant book is the product of years of enforced silence and frustration, rather like a minor prophet's. It will probably have a wider audience than Tanya would ever had from one pulpit or conference platform. My hope is that it will have a huge circulation. It deserves it.

(Those who Wait is published on 16th October, and can be ordered from Wordery and other online and retail outlets, I believe.)