Sunday, 16 July 2017

On vulnerability

This week, I have been reflecting on vulnerability, on my own vulnerability and that of others, especially those who are close to me, of why few of us want to admit to being vulnerable, of why it would be empowering if more of us were able to admit to our vulnerabilities, whatever form they may take.

Fear and vulnerability go hand in hand. In my case, my vulnerabilities are physical - I have two club feet, arthritis and a damaged lower back. While these afflictions cause me some level of pain most days, I do tend to just get on with things and, fortunately, I have a career in which skills such as mountaineering, skiing or tap-dancing are not required. 

But when I have a bad pain day, it doesn't just hurt me physically, it upsets me, although I seldom show this side of my psyche in public. I had one such bad pain day on Monday - I was too proud or vain or silly to retrieve my crutches from the cupboard under the stairs to help with my commute, even though that would made life so much easier. I got angry and annoyed when someone walked at me when I was using a handrail on the tube station staircase. By the end of the day, I was in so much pain, I had to cancel my plans for the evening and limp home to wallow in the bath.

On those days, the fear is that my feet or knees will seize up at an inopportune moment. Awful scenarios often pop, unsolicited, into my head - maybe I will be rendered immobile in a busy tube station in rush hour, or a cyclist or scooter rider will come up behind me on the footpath and I won't be nimble enough to get out of the way in time. This nearly happened to me this afternoon and all I could do was impotently shout: "Use a fucking bell, you twat, or ride on the fucking road!" when a cyclist silently rode up behind me on a footpath as I walked to the shop and gave me a massive fright. Not my finest moment, I admit, but it's just what came out as I realised that a stray step to the left or right could have put me in hospital.

For me, it is these feelings of powerlessness and the fear that one day, being in pain will put me in real danger that make me vulnerable. What if someone is chasing me and, despite my commitment to flat shoes, I just cannot run away? What if the next time I fall over, I'm home alone? So many what-ifs...

Getting older, and its inevitable physical consequences, add to this fear. And I hate it, I fight it, but sometimes I need to vocalise it. If I cannot go out because I genuinely cannot walk, I should not be afraid or embarrassed to say so.

For others, their vulnerabilities stem directly from mental health issues, rather than the psychological distress following on from a physical condition. Anyone who dares tell me that mental health issues are not real, that sufferers can simply "snap out of it" can, with all due respect, get the hell out of my sight. Mental health conditions cast long shadows over the lives of patients and everyone around them. 

Such conditions can be managed but they can also lead to irrational behaviour, to frustration and despair among those who love them, to ends of tethers being reached, to crippling feelings of guilt when one feels that one has not done enough or can do no more. 

Insidiously, mental illness does not discriminate. To say that someone is too pretty/rich/intelligent/successful/talented or whatever to suffer from a mental health condition is reductive and asinine. The suicide of Robin Williams is tragic, the suicide of a member of my family was also tragic, there is no hierarchy here, no one more or less deserving of help. Vulnerability has a distressing power all of its own.

Any one of us could be felled by mental illness - and the causes are myriad - so to dismiss someone's condition because they don't fit the perfect victim stereotype is to make it harder for these conditions to be understood. It creates stigmas, it makes it harder for people to seek the help they need. 

It's as awful and unhelpful as condemning rape victims who don't fit the perfect victim stereotype - as if a woman who had the temerity to sleep around or be a sex worker or walk home by herself in a short dress is somehow less deserving of sympathy than a violated virgin. This mentality causes monstrous behaviour. When a hitherto strong, gutsy woman is reduced to a fragile, vulnerable mental state after being raped, she too needs support rather than being merely expected to get on with things. 

But it's not just about us not being afraid to admit our vulnerabilities. We all have a responsibility as a society to ensure there is a safety net for the vulnerable, that it's not just left to charities to pick up the pieces, that governments ensure that their programmes and institutions are properly funded and offer real help, not false economy Band-Aid solutions. 

This weekend, I experienced first-hand an NHS emergency mental healthcare service and I was impressed with the patience, efficiency and compassion that was shown on behalf of a friend in crisis and towards me as well. It was reassuring to be told that I had done the right thing and not to be made to feel as if I was wasting time. But I know that the excellent work of NHS mental health workers is undermined by underfunding, overstretching of resources and overwhelming demand.

I have no easy answers but as I shut the door on an emotional weekend, I do know that the safety net is gossamer-thin and when someone falls through it, it doesn't really matter who they are. What matters is how we can do better, how we can not be brutes, and how we can be kinder to ourselves and to each other for we all have our vulnerabilities.

Photography by Beth Punches/Flickr

Sunday, 2 July 2017

No winners in the tragic case of Charlie Gard

It is impossible not to be moved by the plight of Chris Gard and Connie Yates, parents of Charlie Gard, the 10-month-old baby suffering from infantile onset encephalomyopathy mitochondrial DNA depletion syndrome (MDDS). It is a cruel condition which causes progressive muscle weakness and brain damage. We have no real way of knowing if Charlie can feel anything because he can't see, hear, move, make any noises, breathe without the help of a ventilator or receive food without a tube. He is epileptic and his heart, liver and kidneys are failing.

At present, there is no effective cure for MDDS. However, specialists in the USA offered Charlie's parents hope in the form of an experimental treatment called nucleoside bypass therapy. Chris and Connie launched a fundraising appeal with a target of £1.3 million to cover the costs of treatment, which it passed after 83,000 donations came in.

But British courts and now the European Court of Human Rights (ECHR) have ruled that it is not in Charlie's interests to travel to the US for this treatment. This means that palliative care, including removing life support systems, allowing Charlie to quietly slip away, is the next step.

All courts which have heard the case have examined extensive medical evidence and have all come to the conclusion that nucleoside bypass therapy would have no real prospect of extending or improving Charlie's life. Those who are using this case as a stick with which to beat the EU are being absurd - if the Conservatives make good on their pledge to withdraw from the ECHR as part of the Brexit process, this option is gone forever. Without this court as an option, it is highly likely that Charlie would have passed away already.  

Nucleoside bypass therapy has never been tried on anyone with Charlie's gene before. In theory, the treatment could repair Charlie's mtDNA and help it synthesise so he is given the compounds his body is not producing naturally. So far, it has only been used with very limited success on patients, such as Arturito Estopinan, whose condition is not as serious as Charlie's and whose affected gene is not the same as Charlie's. 

The treatment is an oral medication which would be taken over a six-month period. A large proportion of the £1.3 million cost would involve the risky and highly specialised procedure to transport a gravely ill baby who cannot breathe on his own from the UK to the US, along with whatever the hospital would charge, and the costs incurred for Chris and Connie to stay in the US for the duration of the treatment. Money is also required to pay fees to the GoFundMe website, which has hosted the appeal - something for anyone considering an online fundraising campaign to take into account.

However, the neurologist who would be overseeing the treatment told the Family Division of the High Court that Charlie is in the "terminal stage" of his illness. He also said that the treatment will not reverse the brain damaged which Charlie has already suffered, and that he had not at first realised the full extent of Charlie's condition. The sad reality is that even if Charlie survived the trans-Atlantic journey, by the doctor's own admission, his life expectancy is heartbreakingly short and the treatment does not represent a cure.

Pope Francis issued a statement from the Vatican's Academy for Life in relation to Charlie's case which outraged many Roman Catholics, although I think he showed a combination of compassion, humanity and realism. The statement acknowledges that there are still limits to modern medicine saying that we do "have to recognise the limitations of what can be done, while always acting humanely in the service of the sick person until the time of natural death occurs". The statement goes on to refer to Encyclical Evangelium Vitae in regard to "avoid[ing] aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or family".

I do not for a moment think the British or European justice systems are in the business of wanting to exterminate babies. And neither is Great Ormond Street Hospital, the excellent children's hospital which has been treating Charlie. It is one of the world's best paediatric hospitals and every day, it does wonderful work, saving the lives of children, and offering the very best palliative care for those who sadly will not make it to adulthood. Depressingly, people have publicly stated they will no longer make donations to the hospital because of the Charlie Gard case.

The Ashya King case has been cited as an example to follow in the case of Charlie Gard - that was the 2014 case of the parents of Ashya King removing him from a British hospital and taking him to the Czech Republic for proton beam therapy for a brain tumour. But in that case, Ashya, then aged five, was able to travel to Prague without medical assistance and the treatment was effective. The farce of an international manhunt for Ashya's parents was not a high point in crime fighting but as a result of the successful treatment Ashya received, the UK is to get its first proton beam therapy machine at a cost of £17 million. It will be installed at the Rutherford Cancer Centre and is expected to treat 500 people each year.

That is a wonderful legacy and the best possible outcome of the Ashya King case. The legacy of Charlie Gard will most likely be his parents starting a charitable foundation with the £1.3 million in donations - if this means further research for mitochondrial conditions can take place in the UK, who knows what amazing scientific advances might be achieved on British shores? 

For now, Charlie's case represents an awful intersection between the right of parents to seek medical treatment for their children and the often devastating realities of what is medically possible. Pope Francis again said it well in his statement when he said that "the wishes of the parents must be heard and respected, but they too must be helped to understand the unique difficulty of their situation and not to be left to face their painful decisions alone."

The case also exposes the astronomical costs of American healthcare for the uninsured, along with the decisions which balance finance with medicine faced on a daily basis by NHS trusts across the UK. Neither health system is perfect and, based on medical evidence, neither system is currently in a position to help Charlie beyond making his last days comfortable, peaceful and dignified.


Here is the link to the Supreme Curt judgement

Here is the link to the Court of Appeal judgement

Here is the link to the High Court judgement

Photography by Lindsey Turner/Flickr