What do you think of Esther?

"What do you make of Esther Rantzen?" asked my brother.

I knew what he was talking about, as no doubt all listeners of Radio 4's Today Programme would have done. Clearly the advocates of assisted dying, or specifically suicide, have launched the next round of their campaign, even enlisting the late Diana Rigg, whose resemblance to my wife was once commented on by an old welsh policemen, as a witness. The Today Programme devoted a great deal of airtime to the subject on a number of days. My reply to my brother was that I thought it was a good thing if we were more open about the subject of death and dying. After all they are events everyone without exception will come in contact with at some point or another. So the sooner we stop treating it as a taboo subject the better. However the dangers of legalising assisted suicide, are proved by places like Canada and Belgium.

In January this year I made a submission to the Parliamentary Health and Social Care Committee consultation on Assisted dying/assisted suicide:

"I am writing as an individual who was diagnosed with a rare form of Motor Neurone Disease twenty-two years ago and who has experienced the condition’s relentless deterioration since then. There are a number of my contemporaries who have survived that long. That, and witnessing the ravages of the disease on friends in our local MNDA branch plus an Ethics qualification from Oxford, is the extent of my expertise.

"My first observation is how positively my contemporaries, with short or longer prognoses, with the disease seize hold of life. Clearly there are some who, like Rob Burrows, devote themselves to fund-raising and creating awareness; while others enjoy the opportunities of life that come their way. What might have seemed a death sentence has proved a challenge to live.

"Secondly, I have recently discovered myself how expert professional care can enhance what is often portrayed as undignified dependence. Good caring can in fact add to quality of life. The sad thing however is that it is not something which the state will normally provide. Along with terminal palliative care, domestic social care must surely be a spending priority for any government that cares about the well-being of all its citizens. I’m fortunate to live an area of excellent MND provision and good, though not abundant, palliative care. But I understand that this is not equally spread through the country. If it were, I suspect it would reduce the fear of dying which must be a major motivator for assistance to ending one’s life.

"Ironically, in MND, according to the Association’s information sheet, How will I die?, those fears are greatly exaggerated: ‘In reality, most people with MND have a peaceful death. The final stages of MND will usually involve gradual weakening of the breathing muscles and increasing sleepiness. This is usually the cause of death, either because of an infection or because the muscles stop working.

‘Specialist palliative care supports quality of life through symptom control. practical help, medication to ease symptoms and emotional support for you and your family.

‘When breathing becomes weaker, you may feel breathless and this can be distressing. However, your health care professionals can provide support to reduce anxiety.

‘You can also receive medication to ease symptoms throughout the course of the disease, not just in the later stages. If you have any concerns about the way medication will affect you, ask the professionals who are supporting you for guidance.

‘Further weakening of the muscles involved in breathing will cause tiredness and increasing sleepiness. Over a period of time, which can be hours, days or weeks, your breathing is likely to become shallower. This usually leads to reduced consciousness, so that death comes peacefully as breathing slowly reduces and eventually stops’ (EOL5-How-will-I-die-2018, rev 2021).

"So this is a third and subtle danger of legalising assisted dying/suicide. It would increase people’s fear of the inevitable fact of death and dying. I think this can be one factor in explaining why, in jurisdictions which have introduced it, we see it being extended beyond the first strict limits. It is held out as an answer to this fearful fact, death, whereas in fact death and dying should be talked about in realistic terms, as normal, as concisely outlined by Dr Kathryn Mannix (https://www.bbc.co.uk/ideas/videos/dying-is-not-as-bad-as-you-think/p062m0xt). As she says, normally dying isn’t as bad as we think.

If the government should be doing anything, the first thing it might well do, is to promote informed education about dying of the sort exemplified by specialists such as Dr Mannix, as well as adequately funding her former specialism of palliative care. It should start with schools’ curricula. After all every child will have encountered death at some stage.

Fourthly, the dangers of coercion, in my experience, are not so much external as internal. It’s often rightly observed that prolonged pain is worse for the engaged spectator than for the sufferer. If you care for someone, seeing them struggling is barely tolerable. You may wish to see their struggle over, but underlying that wish is your own desire to be spared more of your own horror show. The person who is ‘suffering’ however has that EOL5-How-will-I-die-2018, rev 2021 strong survival instinct, common to all humans, and is more concentrated on living than dying. Having said that, when you are depressed, as might be natural, that instinct gets temporarily eclipsed. Then you need protection from your own dark sky. It is at such times that your other inner demons emerge: your sense of being a burden - to your family, to your friends (if you have any), to the NHS and to the state purse; your fear of losing your savings and of leaving nothing to your loved ones; your fear of pain and of dying (exaggerated by popular mythology), and your sense of suffering, heightened by your depression. 

"For most of us with long incurable diseases, it’s these internal perceptions that are most coercive, although they can be easily compounded or even exploited from outside. I don’t see any way to protect us from such coercion, internal or external, except to demonstrate through legislation that every life, however tenuous, is equally important to our society and worth caring for. ‘Any man’s death diminishes me...’ and so we will value it to the end."

I'm grateful that when I received my 'motor neurone disorder' diagnosis, which was initially frightening, I couldn't be tempted to opt for an early death. Instead of one Christmas with my family (as I warned them), I've enjoyed 22 more Christmases. That was the law against suicide fulfilling its safeguarding function, protecting the vulnerable, as I was then. Contrary to my preconceptions, my form of MND (PLS) is very gradual and I've been able to live a full if increasingly limited life, thanks to my wife, Jane, who cares for me 100% 24 hours a day seven days a week. 

My view is still that legalising assisted dying/suicide has more cons than pros. The better choice is to invest in hospice and palliative care, so that everyone may have access to pain and symptom care in the last years of their life.

 

"Let me die - naturally" The Future of the NHS - a patient's eye view

Recently the news has been full of stories concerning health.  On 6^th January Noel Conway’s application for a judicial review of the Suicide Act hit the headlines briefly.  In the following week the Red Cross described the situation in the NHS as being a ‘humanitarian crisis’, which the government vehemently denied and characterised as hyperbole.  Then Mrs May effectively told GPs that the stress on A&E departments was their fault for not having more weekend opening.  It seems to me that, intended or not, there is the makings of a perfect storm here.

I cannot but sympathise with Noel Conway.  He has the most common form of Motor Neurone Disease (ALS) and is seeking a judicial review of the 1961 Suicide Act on the grounds that it infringes his human rights.  ‘I have a right to determine how and when I die, and I want to do so when I have a degree of dignity left to me.’  I too have a form of MND; mine is Primary Lateral Sclerosis, a very prolonged form of the disorder.  I can utterly understand his fear of increasing dependency, becoming ‘entombed’ in his body and dying.  However I have long argued that legalising assisted dying is fraught with dangers and not the way society should go, no matter its attractions.  The success of its implementation elsewhere in the world is utterly debatable.

My purpose here is not to re-enter the debates which have been exhaustively rehearsed in both houses of Parliament and in all the courts in the land over very recent years, nor to quarrel with Mr Conway’s decision.  I should prefer to step off the carousel of fear to which Dignity in Dying chooses to give an occasional push, and ask, ‘Could there possibly be a different way forward?’ 

I want to explore a radical alternative.  In fact it is a rethink of our society’s priorities and is intimately related to the deluge of health related stories.  Like many industrialised nations we are sitting on a demographic time-bomb.  The baby-boomers are beginning to draw their pensions.  The number of us over 85 is forecast to have doubled by 2030, creating an increasing ‘burden’ as age-related illnesses necessitate more intensive and extensive care.  It all costs money. 

The NHS, if not in crisis, is undoubtedly in dire straits.  An exponentially rising demand on the national purse seems inevitable.  The cheapest solution would be to legalise euthanasia, voluntary or even involuntary.  However 20^th century history should have taught us that this is an inhumane road, for example, leading to the deaths of 275,000 people between 1939 and 1945 under Aktion 4, based on ‘the idea that there is such a thing as a life not worthy to be lived’ (Leo Alexander, writing after the Nurenberg trials).  An easy solution but finally unacceptable.

My observation is this: Death is natural; humans causing death is unnatural. Our culture appears to proclaim that death is unnatural, to be feared and postponed at all costs.  Yet it is universally inevitable.  We will all meet it.  Frequently some medical advance or some public health campaign will be greeted as saving so many hundreds, or thousands, of lives, when the truth is it could extend those lives by a few months or years.  The temptation on the cash-strapped research community to allow such exaggeration is understandable.  Doubtless the dream suits the pharmaceutical industry, the illusion of virtual immortality.  However it is a dream, which would turn out to be a nightmare.

Is there a better way?  I believe there is.  First of all, let’s not be afraid of saying that death is part of life.  Instead of making it a fearful monster to be avoided, let’s admit it is a fact to be faced.  And then, as a nation, let’s seek to make the natural process of dying as pleasant – or at least not unpleasant – as possible, something to be celebrated.

Would it not be better if, instead of pouring funding and resources into officiously keeping alive, the national health budget was shifted to surrounding natural dying with comfort and dignity?  We pay lip-service to the importance of palliative care.  We are rightly proud of the history of hospice care in this country.  On average government funding accounts for a third of hospice income.  Charities such as Macmillan Care receive a tiny proportion of their income in grants.  In other words palliative care is predominantly funded voluntarily.  It is true that many people die in hospital (about 50%); it’s also true that most of us don’t want to.  Dying at home is the choice of 83%, a 2014 survey found .   Home care, where possible, is cheaper than hospital care. 

So I suggest a recalibration of the health and social care budget, designed to provide top-quality palliative care nationwide.  This would clearly involve a massive programme of specialist training as well as simple training in home care.  It would mean reversing the policy of cutting the district nursing service.  It would also mean that we rethink the treatments we, the public, automatically demand for every eventuality at every stage of life.  We might have to accept more often doctors saying, ‘I'm sorry that we cannot do anything to prolong your life but we can offer you excellent care for the time that remains to you.’  One doctor told me, ‘Where I believe there is a problem is in highly expensive treatments to prolong lives that are ebbing away either with chemotherapy or intensive care.  We have a clamour that the treatment that prolongs the process of dying for a few months in a trial should be available to all.  Such results are a stepping stone to more effective treatments but not a justification for implementation across the board.’  If the NHS provided better end of life care, then  charities or individuals could step in to plug the gaps in research and non-essential treatments. 

Undoubtedly the definition of ‘essential’ in this context is one for society to debate and law-makers to decide.  It would be intolerable for doctors alone to decide the fate of patients.  Their calling is to ‘tread with care in matters of life and death’, and ‘not to play at God’ (modern Hippocratic Oath).  In order to achieve the sort of end of life care that would mitigate the fear of the process of dying would undoubtedly cost money.  How such funds would be raised, whether through more rigorous rationing of other NHS treatment or through hypothecated taxation or somehow else, is beyond my competence and the scope of this blog.

My primary purpose here is, as a patient, to join calls, such as those made by the 75 leading health experts to Theresa May on 11^th January, for radical solutions to the break-down of our health and care system.  It is not a problem for us that can wait for some utopian answer in 2020.  Let’s accept that we’ll die but avoid the unacceptable shortcut of the sirens’ road towards the cheap solution, euthanasia.

(A shorter version of this blog was first published in The Huffington Post on 20th January 2017)

Losing your voice

Referendum campaigners suddenly woke up to the fact that many, particular young, people are feeling unheard and disempowered. So last night as the deadline for registering to vote approached the registration website crashed and kept crashing. I heard someone relating how this supposedly two-minute process took them three minutes to complete the first page and then it crashed and continued to do the same thing. I wouldn't be surprised if they'd given up. One might argue that they shouldn't have left it to the last moment. But such is human nature - well, for a lot of us. I must admit to being someone who's worked better to deadlines. Which reminds me, I have an article I must send in this week! It is a shame, however, when people lose their voice needlessly, when what they want to say isn't heard. It's even worse when it happens by force.

In Motor Neurone Disease (or Lou Gehrig's) most people soon lose their voice - literally. Jozanne Moss, my South African co-author in I Choose Everything, described how she wanted to forestall this for her young children. When she and her husband Dave were taking a break together, she recorded DVDs for them which they could play in years to come after her death. (See below.)

This month is MND Awareness Month. One of the aspects being highlighted is its effect on speech, in a campaign called Silence Speaks. Hayley Ladbrooke's account of a week without speaking, which you can read in the link, makes the point. Her father, Robert, has the disease. “I spoke to my dad after completing Silence Speaks to find out how he finds things and he said it’s really hard work and people can turn their back on him. He used to be the life and soul of the party and now people sometimes can’t be bothered to wait for him to talk or they just can’t understand what he’s saying."

Last year I received an email from a young man named Olly Clabburn, who is looking at another aspect of the same symptom, similar to the approach that Jozanne took.

"My name is Olly and I am a PhD researcher at Edge Hill University in Lancashire. My thesis is investigating a therapeutic intervention for people with MND, and how this impacts upon children/young people who care for a family member with the disease, and also children who are bereaved due to MND.  This all stems from my Dad (also a Michael!) and Nan, both having MND when I was younger and me wanting to provide better support for children who are affected by someone in their family having the disease.

"Essentially, my research is investigating the use of a ‘digital legacy’ with people who are affected by MND. This means people with MND creating video messages and recordings of their memories specifically to be given to children in their family to watch and use whilst they provide care, and for when the young person becomes bereaved.  

"I have set up a research page (www.facebook.com/mndlegacy ) and wondered if it is something you might consider including in one of your blogs? I am now at the stage where I can begin to speak to people living with MND who have recorded or currently recording a legacy. First and foremost though, I hope to raise awareness of creating a digital legacy and being a potential project that people living with MND can do for free at home, and also, hopefully help to support some children in the future."

Olly's idea seems brilliant to me, and I hope that he gets a lot of material. My own vocal deterioration seems to have ground if not to a halt, at least to a snail's pace, and people who know me are quite tolerant of my mouth full of marbles. But then I'm one of the few lucky ones.

From I Choose Everything, Jozanne's Diary: 

We had the rest of the week to ourselves, but this was not going to be just another romantic holiday together.  We had other plans and we came prepared.  From the beginning of the illness I have wanted to make DVDs for the children.  I wanted to leave special messages for them on special birthdays.  I also wanted to tell them what I was like as a child, what they were like as babies, and how much I loved and enjoyed them.  Kids want and need to know these things; I know I did.  I loved hearing from my parents about their childhood but also what I was like as a small child.  I know I probably won't be around to see Luke and Nicole grow up, but I want to make sure that, as a mother, I will still be a part of their lives.

In the beginning I thought that I would make a DVD every now and again, but it never materialized.  I just never felt ready and always put it off for 'one day'.  Lately I have noticed that my speech is starting to change, ever so slightly, but I can feel it – as if my tongue is lazy and gets stuck when I say certain words.  I have to work a little harder when I speak.  People who don't know me wouldn't know the difference, but I know it's starting.  We have decided to make the DVDs now before it's too late.  I want to sound like the real me when I leave my special messages for them.

So on Monday morning Dave and I woke up, ready to tackle this difficult task.  While Dave set up the recording equipment, I made brief notes of more or less what I wanted to cover in my messages.  When Dave was ready it was time to begin.  He started filming…   I didn't feel comfortable at all.  In fact, I felt so self-conscious, I was giggling like a little girl.  Too much nervous energy.  I was trying too hard to sound natural, and instead came across fake.  This is not what I wanted.  Dave suggested that I just chat as though I was chatting to them.  This was a lot harder than I ever imagined it would be and I felt so frustrated.  Dave's phone rang and that broke the tension, but the phone call was to inform us that an old friend of mine's husband had committed suicide.  They have two boys younger than Luke and Nicole.  I was devastated.  No more filming that day.

Tuesday was very different.  This time it was real.  My friend's loss and pain became mine.  When Dave started filming, I started crying.  The thought of Luke and Nicole growing up without me became so real, and I now I had the opportunity to leave them with something, unlike Linda's boys who will never really understand why their father left.  What a privilege and special opportunity I have!  Thank you, Lord.  We made quite a number of DVDs in the days that followed and, although it was one of the hardest things I've ever done, it was also very fulfilling.  It felt like a journey that I took with each one of the kids.  My prayer is that it will be as special for them to watch the DVDs as it was for me to make them.

The letter The Guardian didn't print

A week ago, when I was away on a much-needed break with my family, the media, led by The Sun, was full of the case of Mr Bob Cole, a councillor from North Wales, who was due to commit suicide on the Friday afternoon in the "Dignitas" self-styled clinic in Zurich. It was clearly a media-event  pre-orchestrated by the pro-euthanasia lobby in this country. ITV had contacted me for an interview on the Thursday, but I wasn't then well enough to oblige. So I did the next best thing I could and sent a letter to The Guardian newspaper, before we left on holiday.

This was what I wrote:

Sir

I am sad to learn that The Sun has lent its megaphone in support of what appears to be the latest salvo in Dignity in Dying’s campaign to legalise assisted suicide.  No one can fail to be moved by Mr Cole’s suffering nor that of his late wife.  However the campaign threatens to open a Pandora’s box of unintended and dangerous consequences for those of us who suffer from chronic, terminal or disabling conditions – and indeed ultimately for our whole society.

Mr Cole is quoted as having “no wish to die in pain without any dignity”.  Neither do I.  I have a very slow form of MND, and although I don’t relish the prospect of dying I have confidence that my dignity will not be sacrificed and my symptoms will be well managed, thanks to advanced palliative care pioneered by the hospice movement.  Ironically, in our sophisticated culture, the populist campaign is based on an immature fear of the process of dying.  Rarely is that process easy, and as our population ages so the difficulties increase.  However short-circuiting the process, which is what Dignitas and assisted suicide offer, merely adds to fear and militates against acceptance of the inevitable, and good dying.  Deliberately ending life, also known as killing, is no way to go.  Expanding and investing in palliative care, which is real compassion, is the better way.  

The vast majority of disabled and vulnerable people are protected by the law as it stands, and fear any change.  To pass a law which admits that some lives are less valuable or worthy of protection, as has happened wherever euthanasia or assisted suicide have been made legal, is a thoroughly dangerous precedent.  I trust MPs resist the loud siren-call of press magnates and listen to the voice of informed reason.  Keep us safe.

Yours etc

Sadly, The Guardian, whilst making quite a thing of the event, chose not to print my response the next day. I am sorry because I think that opinion formers such as journalists and law makers such as MPs need to be made aware that euthanasia is not a good universally acknowledged - anything but.

The disabled to get their Pips squeezed

from Uffington Post

I receive Disability Living Allowance, free of tax and not means-tested, which consists of two components: a) mobility, and b) personal care. At the moment I receive the maximum (of 3) bands for mobility, as I can't walk unaided or drive. That allowance is all used by Motability from whom we lease our car, which we have in order to carry my wheelchair, rollator, and all the clobber associated with my PLS. In due course, when I can no longer manage the passenger seat, it will go towards a roll-on-roll-off version. I have only the middle band of the personal care component as I can still feed myself, wash and toilet myself (given some preparatory help from Jane. Actually I can't pull up and fasten my trousers once they're down!).  The DLA is a great help, as it compensates for a number of extra expenses incurred by my disabled state.

I was advised to apply for it by my physio when my MND really made itself felt. The form is not excessively complex, but asks quite specific questions. It relies on self-assessment and therefore honesty (although I seem to remember having to give details of my health professionals such as doctors, with permission for the Department of Work and Pensions to contact them for verification).

The Government has plans to replace this benign compensation for disability with a new idea, PIPs, Personal Independence Payments, with the aim of cutting the cost (approx. £12 billion and rising) by up to £2.24 billion. It will mean reassessing 2 million claimants with the aim (or hope) of pruning out 500,000. Iain Duncan-Smith, Secretary of State for Work and Pensions, is the man entrusted with handling this sensitive issue. The PM must hope he'll present it with more skill then the Budget fiasco. 

His first attempt, to the Torygraph, as reported in the Huffington Post, is a curate's egg.

"Duncan Smith told the Daily Telegraph: 'We are creating a new benefit, because the last benefit grew by something like 30% in the past few years. It's been rising well ahead of any other gauge you might make about illness, sickness, disability or for that matter, general trends in society.

"'A lot of that is down to the way the benefit was structured so that it was very loosely defined. Second thing was that in the assessment, lots of people weren't actually seen. Third problem was lifetime awards. Something like 70% had lifetime awards, (which) meant that once they got it you never looked at them again. They were just allowed to fester.'

"Duncan Smith defended the reforms which could see people without limbs, including ex-servicemen and women, no longer entitled to disability benefits as their everyday mobility is not undermined by their prosthetic limbs.

"He told the Daily Telegraph: 'It's not like incapacity benefit, it's not a statement of sickness. It is a gauge of your capability. In other words, "Do you need care, do you need support to get around?". Those are the two things that are measured. Not, "You have lost a limb".'

"Ministers are consulting on the new eligibility criteria for the disability benefit system which will be announced in the autumn."

Much of that seems to me reasonable. It's reasonable to want to keep a check on the validity of the initial claims; it's reasonable to keep a weather-eye on their continuing validity. It's true that medical technology can restore people to independent living and it's reasonable that the cost of that technology should be offset by savings on DLA. But there will be additional costs in the task of 2 million reassessments (carried out by GPs or more probably specially employed assessors). And to my recollection the benefit was not "very loosely defined"; in fact the questions were very specific, such as how far could I walk unaided, and could I dress myself, could I cook for myself, shower unaided etc. What I'm dubious about is whether my GP or consultant were ever asked to confirm my answers. (It may be that MND is recognised as a severely disabling condition.) 

I am, every year, at the same time as being informed about the monthly rate, told that I must report any change which might affect my award. It wouldn't be very hard for the DWP to contact my GP to check, if they wanted to. It would probably be cheaper to do that across the board than to set up an entirely new system with a large number of new assessors. 

Bishop: "I'm afraid you've got a bad egg, Mr Jones";
Curate: "Oh, no, my Lord, I assure you that parts of it are excellent!"
"True Humility" by George du Maurier, originally published in Punch, 1895.

I suppose the most rotten part of the curate's egg is the sentence, "They were just allowed to fester." I'm sorry, I'm sure, that the minister regards allowances such as mine as a running sore, a festering wound in the body politic. I can assure him that most disabled people would prefer not to be a burden on the state; in fact they'd prefer to be sound in wind and limb. But it's quite nice to know we're not forgotten and that someone once cared enough to set up a system which, even if it can't erase, can at least ease the experience of disability. 

I sincerely hope that the new PIPs have the same humanity at their heart. (I tried to find pictures of IDS with disabled people, in vain - I wonder why - with the exception of the one above; at least I'm assuming the seated man is disabled - as it's from the Royal British Legion's website. However I did find this one from My Marilyn blogspot, which satirizes my hope....) Will its scepticism proves unfounded? Will the Secretary of State turn out to have the heart of Florence Nightingale?

"Untold possibilities"

Last time I wrote about Bram Harrison, the DJ with Locked-in Syndrome. A bit of the I article I omitted was this: "Harrison is cognitively sharp, funny and mischievous; a technology geek who holds faith in medical progress, stem cell advances in particular, to perhaps unlock him one day." 
Browsing the MND Association website this afternoon I came across this article: Association-funded stem cell research achieves milestone. I remember talking to Tom Isaacs, with Parkinson's, who walked 4500 miles round the British coast raising funds for research into that disease, about ten years ago. He had great faith that research would see a cure even within his lifetime. He founded The Cure Parkinson's Trust, whose watchword is "Hope". Neither he nor I could have foreseen the exponential acceleration of research into neurological conditions over that time. What particularly excites me about the research described below is that it doesn't use embryonic stem cells (i.e. obtained from fertility-treatment excess embryos) but induced pluripotent stem cells (iPS cells) obtained from adult skin cells. For me it poses less of an ethical problem. Predictably this news didn't hit the national headlines, in contrast to embryonic stem cells - which seems to with strange regularity.


However, this is a really good news story for the reasons the article explains.

A cutting-edge stem cell research programme funded by the MND Association has produced a key development that could have a powerful impact on the search for treatments for MND.

The international research team, led by world-class scientists from the University of Edinburgh, King’s College London and Columbia University (New York), has for the first time used stem cells derived from adult skin to generate living human motor neurones that display key characteristics of MND.

These diseased neurones offer huge potential. As a uniquely realistic laboratory model of the disease they could allow for rapid screening of thousands of drugs, as well as furthering understanding of underlying disease mechanisms.

What did the researchers do?

Researchers started with skin cells donated by a 56 year old man with the rare, inherited form of MND caused by mistakes in the TDP-43 gene. Although abnormalities in this gene are uncommon, the protein produced by the TDP-43 gene has been implicated as a pivotal player in the majority of cases of MND.

Scientists used a special cocktail of chemicals to ‘reprogramme’ the donated skin cells, turning them first into stem cells similar to those derived from embryos and then into motor neurones.

Compared to motor neurones generated from the skin cells of healthy individuals, the neurones with the abnormal TDP-43 demonstrated decreased survival and increased vulnerability to damage.

The TDP-43 protein also displayed a greater tendency towards clumping together, or aggregating. This is a recognised hallmark of diseased neurones in MND and for the first time provides scientists with the opportunity to see the direct effect of abnormal TDP-43 on living human cells.

“Untold possibilities”

The team’s results, published as a ‘free to access’ article in the journal PNAS, provide proof of principle that skin cells can be successfully turned into diseased motor neurones.

At the same time they represent significant progress towards the key aim of this groundbreaking £800,000 programme: to develop and characterise a robust human cell model of MND that can be made available to scientists across the world.

Dr Brian Dickie, director of research development at the MND Association, said: “This advance is a significant milestone on the road to developing a laboratory model of MND that faithfully reflects the cellular events happening in the patient. It is also a testament to the importance of international collaboration, with eminent scientists from leading institutions around the world focused on the common goal of understanding and, ultimately, defeating this devastating disease”.

Prof Siddharthan Chandran of the University of Edinburgh, who is leading the programme, said: “Using patient stem cells to model MND in a dish offers untold possibilities for how we study the cause of this terrible disease as well as accelerating drug discovery by providing a cost effective way to test many thousands of potential treatments.”

How much better is it to cherish hope than to abandon it. Wasn't it Dante's Hell that had the sign over it, "Abandon Hope, all ye who enter here"? Well, here's a reason for hope, maybe not for my generation, or just maybe so....

Jozanne

I was thinking of blogging about the FA's high-handed taking managerial decisions out Fabio Capello's hands, and England cricketers collapsing, and rugby-players surviving, but sometimes such momentous matters are put into perspective by something intensely personal. And so today sport, and politics, can be forgotten.

The reason is that when I opened my laptop this morning there was a message from Dave Moss, which still has the potential to make me well up. It was the news that his wife, Jozanne, had died. She is one of the most remarkable friends I've never met. I think it was Archbishop Desmond Tutu who described us as an "odd couple". He kindly provided the foreword to the book Jozanne and I wrote together, I Choose Everything, with the sub-title, "Embracing life in the face of terminal illness".

We'd been put in touch when Dr Peter Saunders met her on a trip to South Africa and she'd read my first book, My Donkeybody. A young mother of two and a primary school teacher, she'd been diagnosed with MND a few years after me and mine was the first book written from that situation by someone with a similar faith to hers. I'd been wanting to explore further the implications of terminal disease for faith in a book, and when she began to send me things she'd written for friends out of her experience they seemed to me to provide exactly the practical groundings my reflections needed - and so the book came to be written. Jozanne had a translucent sort of faith which spoke to people of all shades of viewpoint. As Jozanne's decline was quite rapid, we were delighted when the publishers, Monarch Books, planned to publish the book in summer 2010. We weren't sure how much longer she had for this world.

Clearly she was a fighter, and of course she had every reason to remain for her children, Luke (13) and Nicole (11), but now her fight is over, as the prayer beautifully puts it:
Support us, O Lord,
all the day long of this troublous life,
until the shadows lengthen and the evening comes,
the busy world is hushed,
the fever of life is over
and our work is done.
Then, Lord, in your mercy grant us a safe lodging,
a holy rest, and peace at the last;
through Christ our Lord. 
Amen.



She died peacefully with her husband, Dave, and her two children beside her at home. My overwhelming feeling is of the privilege of having "known" her and worked on our book together. They say teachers have a greater influence than they are aware of. Jozanne undoubtedly inspired, and will inspire, many more people than she ever dreamed possible. It's a curious aspect of weakness faithfully borne that it can have such an effect. She had no doubt that her ultimate home was "to be with Christ which is far better", and I have no doubt she is now discovering its truth. My only regret is that I never met this lovely woman in the flesh. However, one day, Jozanne, I trust I will meet you and enjoy your smile.


Finally, a quotation which would fit Jozanne from Charles Dickens, born 200 years ago today:
"Have a heart that never hardens, and a temper that never tires, and a touch that never hurts."

Lord Falconer's Choice Illusion

So the Falconer "commission" has rebranded itself as a "panel of legal and medical experts" and confessed to being funded by and packed with assisted suicide supporters. In fact, the MP involved said, there was no one on the panel previously opposed to it. 

The fundamental issue seems to me to be a matter of choice, but it's not a matter of individuals choosing how they want to die. Rather it's a matter of us deciding what sort of society we want to live in.

This is the article I'd hoped would be published in a national paper, but wasn't in the event.

"Last year, in the midst of austerity and recession, the BBC’s ‘Children in Need’ raised a record £26,332,334 by the end of a single evening.  Today the self-styled Commission on Assisted Dying under the chairmanship of Lord Falconer, champion of the legalization of assisted suicide in England and Wales, will be presenting their conclusions.  Considering the ‘commission’ is funded by and predominantly made up of similarly-minded people, it’s not been hard to predict what some of those conclusions might have been.  They’ll be couched in reasonable and balanced terms no doubt, and they’ll hardly be novel.  However, on the principle that if you keep repeating something enough times, it will eventually be believed, they’ll serve their purpose. 

"One of the main themes, let me guess, will be that of freedom of choice.  The argument runs something like this: since 1961 suicide has ceased to be a crime.  Terminally ill people, for example with Motor Neurone Disease or Locked-in Syndrome, reach a point when they are unable to take their own lives.  Thus they are deprived of a civil right and unfairly discriminated against.  They, it is said, of all people might well want to end their lives - and the law as it stands means they can’t, because the same Suicide Act (amended 2009) goes on to state: “A person (“D”) commits an offence if (a) D does an act capable of encouraging or assisting the suicide or attempted suicide of another person, and (b) D’s act was intended to encourage or assist suicide or an attempt at suicide”.  It does also leave the jury discretion to convict or not, and only permits proceedings “by or with the consent of the Director of Public Prosecutions” - which explains the minimal convictions under the Act in 50 years.

"If someone like myself should wish to leave our disease behind, why should we not say so and why should we not be assisted, without the fear of our assistants’ facing prosecution?  Surely it’s my life and my choice? 

"In discussions people have said to me, “Suicide’s been legalized.  That means it’s my right to take my life.”  The wording of the Act does not exactly express that meaning: “The rule of law whereby it is a criminal act for a person to commit suicide is hereby abrogated.”  To say that the state will not regard a suicidal person, whether successful or unsuccessful, as a criminal, is not the same as saying that the state sanctions or encourages suicide.  In fact the wording of the 2009 amendment was widened in order to cover internet sites promoting suicide, implying that the state’s inclination is to discourage suicide.  Mr Justice Baker’s judgement in the recent case of patient ‘M’ summed the principle up: “The factor which does carry substantial weight, in my judgement, is the preservation of life. Although not an absolute rule, the law regards the preservation of life as a fundamental principle.”

"The question is whether personal choice can trump the preservation of life.  It is, of course, not true that we have unfettered freedom of choice.  For example, we are not free to drive on the right or without a seat belt, because the state does not want us to kill either ourselves or each other.  Similarly, where we may smoke is restricted.  Even what we may say and write is limited.  There are good reasons for such things, but the point is choice is not an inherent right.  Autonomy, the oft-touted synonym for choice, literally means “having one’s own laws”.  That is incompatible with being part of a larger society.  Therein lies the flaw in arguing for legislation which allows for a variety of practice in the taking of life, or assisting to die.  Once you say that it’s possible to decide your own personal laws in matters of life and death you have no fundamental ground to say a particular action is unacceptable.  It will all depend on circumstance and motive – and that is shifting sand.  Even ‘compassion’ is an elusive and subjective motive.  You may set apparently water-tight perameters, but they also will shift.

"To abandon the preservation of life as a fundamental principle of our society’s laws, in the name of personal choice, would be to retreat from centuries of hard-won progress.  It was, after all, only in 1969 that Parliament voted to abolish the state taking life.  During the debate on the abolition of hanging, Duncan Sandys led the opposition to the vote, arguing that “We have no right to assume that the firmly held views of the overwhelming majority of the British people are unworthy and misguided.”  His view was shared neither by the Commons nor the Lords, and so even the life of the murderer was protected.  (It will be interesting to see whether Sandys’ contention about public opinion, which seems predominantly to favour euthanasia, will be echoed by the ‘commission’.)

"So what will society say to me when I get near the end of my MND – if it’s not to allow someone to top me when I’ve had enough?  I hope it will say, “We will see you through this.  We will give you the best quality of life that’s possible.  We will provide all the palliative care that you need, including supporting your carers.  We will do everything possible to ease your symptoms and to control your pain.”  And I would say, “Please keep me comfortable.  If the pain relief should shorten my life by hours or days, that’s all right.  You’re only doing your job.  And when I should die, just let me be.” 

"Is it a Utopian ideal?  In fact it’s the legal situation now.  But aren’t there doctors out there who’ll betray one’s trust?  Aren’t there trusts and commissioning consortia who will try to trim their care costs?  There are horror stories of the neglect of the elderly in hospitals, after all.  (It’s worth pondering whether one factor beneath the horror stories is the progressive devaluing of the dependent person?)  Well, there are risks, but the society which firmly holds the preservation of life as a fundamental principle will be on the lookout for such breaches and, most importantly, put its resources where its principle is.  And the risks are small beside the risk of abandoning the principle that life is precious above all else. 

"‘Children in Need’ projected on our TV screens the courage and beauty of disabled, dependent and often dying children.  It showed us the incredible endurance and compassion of those who care for them.  There can be no question as to their worth and of the value of enhancing or at least ameliorating their lives.  We know it's right.  The society which cherishes life, even at its most tenuous, is far preferable to one which admits the principle that some lives are disposable.  'Children in Need' or the 'Commission'?  I know which vision I prefer."

from Children in Need website

I know the so-called experts are not calling for euthanasia, but only for assisted suicide of mentally competent adults, but my point is that once the preservation of life is breached as a foundational principle of law and life-taking is permitted a Rubicon will have been crossed, and we shouldn't be fooled that it's the end of the road for the advocates of euthanasia.

All creatures great and small

I apologise if I upset you by saying one can have too much of a good thing. I have to confess to having had a surfeit of Mrs Alexander's hymn, "All things bright and beautiful". The trouble is it pops up so often as the people's choice for weddings, baptisms and even funerals. You'd have thought the days when it was staple diet of school assemblies were long gone - but of course the significant factor is that Grandma and Auntie Flo like it. ("Morning has broken" and "Lord of the Dance" took over as assembly fodder and often appear as choices, but increasingly I found couples asking for my suggestions - dangerous!)

Anyway, although I'm surfeited with the hymn, I agree with the sentiment that nature is the gift of God. Talking of creatures bright, beautiful and small we've been enjoying the company of our grandchildren for the bank holiday weekend. A highlight of their time here was visiting their aunt's horse, Dave. He is large. So grooming him was an interesting exercise!


He's a gentle giant, and so two of the girls rode him in the exercise yard. I'm amazed at the understanding that Rachel has with Big Dave. I suppose it's what all good riders have. There was an item on Countryfile on Sunday of "horse whispering" an Exmoor pony colt - very gentle and patient - and impressive. It looked a bit more like what I think our relationship with animals should be than the rather brutal behaviour often portrayed on screen. Hopefully it's a thing of the past. It's not what "dominion... over all the earth" means, though that's sadly how it was misused in the past.

On Sunday morning after church we visited the local rec - what a good facility such things are! Every local authority should have some. The girls had a whale of a time.

If this photo had a sound track, it would be full of screams about going too fast and falling off - not from Dad (well, not much)! I enjoy having family here.

It also does me good to spend time with friends. On Wednesday we had lunch on the roof of the Ashmolean Museum in Oxford, or rather in the dining room of the terrace there. It was beautifully sunny and warm. We were there with our good friend Elizabeth and her son Dominic. The menu was in keeping with the main exhibition about ancient Greece, excellent Greek cuisine, including Jane's and my first taste of squid.

Then we came to the desserts.... Melopita: honey cake and fresh figs. Very nice it looked too! But then came the wasps. Not just a couple, but Sennacherib's hordes. Amazing how quickly news had got round the wasp community in central Oxford! Our waitress was equally swift, and decisive. "You're going inside," she said, removing our plates. And so we followed her with the glasses and napkins. Miraculously, the wasps chose not to follow us.

The great thing about these particular friends is that they understand our situation perfectly, as Elizabeth's husband, Tim, who died in 2007, also had PLS (the slow sort of MND). For example, Dominic was very aware of my practical difficulties, and unembarrassed by them. We share a Christian faith, but more than that just get on very well personally. It was just one of those special times, which make you aware of how much love and care - and laughter - there is in our troubled world.

Thought for today

I was really struck by this comment today from a friend of mine with a nasty neurological condition: "I do not know all the answers but I personally look forward to the end, but I am quite happy to let God make that decision. My husband likes looking after me as do lots of people, and I would feel I would be kicking them in the teeth if I were to take away their choice." Now that's impressive selflessness.


For a view of the Dingitas factory different from the one we normally see, I recommend this article from the Mail, A daughter watches her mother die. Karen Royle talks about the devastating effects of her mother, Rona's assisted suicide. She had MND and wanted the quick exit for herself, but it left her husband  utterly lost and her family shattered. 'Compared with Mum, Dad had the better death, without a doubt,’ says Karen. 'Although his body was riddled with cancer, he died peacefully at home with us.'


You can see what my friend means.

Welsh reflections

When we arrived at Pen y Banc, I had mental energy for little else than sleeping, watching TV and thinking. I'm not a natural meditator, though clearly MND does force you to sit and stare, as the poet half-recommends.

So here are some reflections from last week.

Early (for me, i.e. 9.30 am) on Sunday we went to St Dingat's Church in Llandovery. Dingat I learn was one of the 36 offspring of Brychan, Irish chieftain and saint, of the sixth century. Well, there were a good deal more than 36 in the congregation. Just as we pulled up outside, a couple of minibuses from, I think, Coleg Elidyr, the local Camphill Residential Special Needs School, were disembarking their passengers. The service wasn't particularly inspiring, the music wasn't especially good, the liturgy was the same as ever, the sermon was comprehensible and straightforward (memorably telling us that academic scepticism about the Trinity was "a load of rubbish"). And yet it was probably the time when I have been most aware of the presence of the Holy Spirit in a church service. I was reflecting on why this should be so, and my conclusion was, "Inasmuch as you did it to one of the least of these my brothers and sisters, you did it unto me." The welcoming acceptance of those we tend to exclude from polite society was the reason for Jesus' presence. 


I recall listening the Dream Center's Youth Pastor speaking at Kingdom Faith in the mid '90s about the vision that led the Barnetts to that remarkable church in downtown Los Angeles. On the website it says, "The vision was birthed out of the fact that in 1994, Pastors Matthew and Tommy Barnett came to Los Angeles with the intention of building a church. They found that they first had to address the physical needs of this impoverished community." My memory is the vision was expressed in dialogue form: "Jesus, we want to build a church where you are present." The Lord, "Bring in the poor, the marginalised and the outcasts - I love their company and I'll be there." 

I've mentioned before the joys of the Beamer Tramper - the cross-country disabled buggy. We first came across it at Pembrey Country Park near Llanelli, and we went back there on Thursday. Blue-badge holders can book it free of charge. It allowed us to go for a really good walk together, which is a real treat. 

We made it up to the view point looking over to the Gower Peninsular, passing en route the hugest specimens of the blue wild flower, Viper's Bugloss, I've ever seen. From the wonders of nature to the perversity of humans. Once we were up there there was a puzzling spectacle below us. Men in orange visijackets and black and green bundles were spread out below us on the grass and dunes. As we came down we discovered more. It was the debris of a student event, we were told. 70 people had been working since Monday clearing up. They still had some way to go by the look of it. The ground had apparently been covered. 

When we reached the information centre, however, we were told it had been a good occasion. I gather it's not dissimilar to Glastonbury after the festival. Both fun and creative events, both leaving a lot of rubbish. I suppose there are some similarities in the natural world, such as vultures and dung beetles. We live in an interdependent world. But surely we can do a bit better than just abandoning our detritus indiscriminately behind us? We're not merely animals.