The NHS Bill, ME/CFS and Professor Pinching’s Farewell message

Call your LibDem MP today and tell them how you feel about the NHS changes.  http://www.38degrees.org.uk/

The NHS and Social Care Bill, returns to the Commons today, and in the words of Michael Meacher MP ‘must be the most cynical, manipulative and dishonest of any bill in modern times’.

 It was sprung on an unsuspecting nation after an election in which no mention was made of it in any manifesto and an air-brushed Cameron ad had assured the country “I will cut the deficit, not the NHS”.   There has been no Commission of Inquiry to examine its philosophy or ideology in depth.   There is no proposal to pilot it before it is imposed full-scale on the health service.   The committee stage of the bill was rammed through with hardly a dot or comma changed.   After the ‘pause’ enforced by public and medical opposition, the altered bill is not being returned to the Committee to consider the changes.   There are now 1,000 amendments to it, to be debated in 12 hours.   And to cap it all, the Dorries-Field amendment on abortion counselling will probably absorb 2-3 hours even of this miserably truncated period for scrutiny.   Clearly several hundred amendments will never even be reached. (1) 

 

In spite of the fine words, the bill remains pretty much intact and can only be intended to open up the NHS to plunder by the transnational private health care and management consultancies.  As Dr Max Pemberton wrote (Telegraph 25.07.11) “ There is no doubt that this signals the first wave of privatizing the NHS”.  It is opposed by all the different professional bodies, many of whom are calling for the bill to be withdrawn.

One of the more alarming proposals in the Bill, is that it removes the responsibility of the Secretary of State for Health for providing a comprehensive health service, free at the point of delivery, and answerable to Parliament for all aspects of the service.  Significantly, it allows private companies to buy and asset-strip NHS facilities.

The people who stand to lose most from the proposed changes are those with long-term illnesses such as ME/CFS.  In the words of the charity ReMember:

In a competitive market you can’t make money out of the long-term sick and services for them could be dropped altogether’ (2)

This is confirmed by a quote from UnumProvident, a private health insurance company who has been advising governments since the 1990s (3).

Unum’s 1995 ‘Chronic Fatigue Syndrome Management Plan’ sounded the alarm: ‘Unum stands to lose millions if we do not move quickly to address this increasing problem’

The NHS changes coupled with the changes to the benefit system makes this a worrying time for people with disability and long-term illness. ME/CFS services are facing cuts to an already patchy and inadequate service.  The Romford Unit, the only in-patient NHS provision for ME has been closed.  The Sussex Wide CFS service now only sees 4/5 patients a month in spite of 400 referrals in 2010.  Child ME/CFS sufferers in Sussex, who used to be referred to The Royal Alexandra Hospital for Sick Children, will no longer be eligible unless they live within the Brighton and Hove PCT catchment area.  Similar changes to the service are occurring nationally and the ‘postcode lottery’ will become entrenched.

It gets worse.   We now learn from emails leaked at the last minute that some 10-20 hospitals are already earmarked to be handed over to the big German corporate outfit Helios – and how many others are already in the pipeline but they haven’t yet been disclosed? … EU competition law or not, would France or Germany conceivably sell off the foundations of their health services to foreigners?

Now the former chief executive of the NHS has just announced that the next aim is to close hospitals.   Waiting lists are already mounting up, and new conflicts of interest are already appearing.   From a dishonest and mendacious government that promised to protect and defend the NHS, this bill is surely the ultimate scam. (1)


(1) http://www.michaelmeacher.info/weblog/

(2) reMEmber (The Chronic Fatigue Society)

http://www.remembercfs.org.uk

(3) https://think-left.org/2011/08/04/welfare-reform-and-mecfs/

By kind permission of reMEmber we reproduce the powerful and moving farewell message of Professor Tony Pinching who is retiring after 30 years.  His message includes his assessment of how the benefit system has treated his patients suffering from ME/CFS. http://www.remembercfs.org.uk

Farewell.

From Professor Tony Pinching

So it is now time, as I retire, to bid you goodbye. By October, I shall have stoped clinical and academic work completely. The Beatles sang about my last birthday, so this is the usual time for transition, and being a clinical academic, I am stopping after academic year end. My career has been very fulfilling, but also very demanding – with far too little time and energy for my interests outside medicine and academic life. I encourage patients to look at work-life balance, so I thought that I should check it out myself! I have definitely done the work, but would like to do more “life” whilst I am able.

Over the years, my work has included: studies on how the brain processes the sense of smell (my first scientific paper was published 42 years ago!); studies on how myasthenia gravis – a different condition of weakness and fatiguability – is caused through autoimmunity, and how that changes the approach to treatment; understanding the nature and treatment of systemic vasculitis, in which there is inflammation of blood vessels, with widespread impact on body functions; understanding, diagnosing and treating different sorts of immune deficiency, congenital and acquired, including that induced by treatments; responding to the emergence of HIV and AIDS, as a new and very challenging immune deficiency, from the earliest years, clinically and scientifically, but also in public policy and public understanding; and, of course, clinical, scientific and policy work on CFS/ME.  These last two areas have been the main focus of my career for nearly thirty years.

As a clinician and scientist, it has been an extraordinarily full and enriching career. I have learnt a lot about people, and about how things work (or don’t!). There remain many frustrations about what we still don’t know or can’t do. But I have tried to remain pragmatic and work with what we do know and can do, whilst trying to extend the boundaries. As a clinical scientist, I have always been nurtured, informed and inspired by my patients and what they tell me. I have tried to do my best to help, but I have been keenly aware in many respects how little that is for people facing the adversity of disease and its effect on their lives. I am sorry that I will at times have fallen well short of people’s reasonable expectations. But for some, I hope that I have been a useful “mountain guide” through the treacherous terrain of illness.

What will I miss? Above all, I shall miss my patients and the opportunity to work with them on their life’s journey, helping them to see how they can make sense of themselves and the world, as revealed by the unwelcome intrusion of disease. I shall miss that sense of extraordinary resilience that people can show in the face of adversity and loss, gaining fresh perspective and inner strength, whilst they make progress in whatever way is feasible, often supported by very special family or friends as carers. I shall miss many fine colleagues, whose guidance and support, professionally and personally, have made my work more effective and satisfying, not least because they are able to do many things that I can’t do. I shall also miss the many individuals and organisations – such as Janice Kent and ReMEmber – who make such a difference in supporting people affected by disease, whether as patients, carers, family or friends. Above all, I shall miss the whole challenge of clinical medicine, professionally and personally – most especially the privilege and responsibility of getting to know and care for someone at a most difficult time in their lives.

What won’t I miss?! Sadly, some of the social responses to illness and those affected – evident with both CFS/ME and HIV/AIDS – show some of the less appealing characteristics of humankind: wilful ignorance, prejudice, stigma, neglect and blame still add to the personal burden of disease, as if that wasn’t enough in itself. I also shall definitely not miss the conflicts of the ME field – often bitter, misjudged and personalised. Whilst I do understand something of why this terrible civil war is still being waged, I am profoundly disappointed by the inability or unwillingness of some of the key protagonists to move on. Some seem locked into disputes that are about past hurts and misunderstandings. I have seen at first hand how one’s views and statements can be deliberately misrepresented.

I will definitely not miss having to deal with the benefits system, with the terrible injustices and misrepresentations that I increasingly see visited upon the ill and disabled. The systems and some of the people who work in them have lost sight of why they are there – to help support those people in society who are vulnerable through illness. Sadly, as a result of political and media rhetoric, and misapplications of poorly thought through processes, everyone seems to be regarded as if they are trying to cheat the system. Self-evidently erroneous (eg judging by success at appeal) and often perverse decisions – about DLA and especially ESA – are being made, in which the accounts by the patient, their carers and clinicians are being ignored in favour of superficial, brief and formulaic “medical” assessments that seem determined to ignore the everyday realities that patients know. These cause unnecessary upset, exacerbate the improverishing effect of illness, and often cause health setbacks.

So what am I going to do with my time and energy now? I plan to spend more time on music – playing (clarinet) and listening – and looking at ways in which music can enrich our lives, including continuing support for music therapy and starting some new projects with professional musicians. Having enjoyed working with a theatre company – Theatrescience (including plays on HIV/AIDS, CFS/ME and dementia), I shall continue to offer my guidance while it has any utility. I want to read more and do some more creative writing. I shall enjoy pottering in the garden and getting it into better order! I would like to travel too, as there are important places still to see. My children have all grown up into very interesting people, whom I want to be with some more, as well as three young grandchildren and wider family.

I do also wish to reflect on my extraordinarily diverse career and experiences, and see if there is something new to say, and write, about medicine and about being a doctor. I will still be a doctor, I just won’t be do-ing doctoring! I often remind patients that “we are human beings, not human doings!” – we can still be ourselves, even if the way we act may have to change as a result of changed circumstances.

As I bid you farewell, I am very conscious of the beautiful and heart-wrenching Farewell that Wotan sings to his favourite daughter Brunnhilde at the end of Wagner’s Die Walkure (The Valkyries), which I heard a few days ago at the St Endellion Festival. This might not be your cup of tea, but just imagine! It is full of profound love and pain, as well as regret about how some things came to be. As he is obliged to leave her on a rocky mountain-top, he surrounds her with a ring of fire – to protect her until the arrival of a true hero, who will rescue her.

So I say a fond farewell to you all, at least in a similar spirit, wishing that you and everyone affected by CFS/ME be surrounded by a metaphorical ring of fire that can protect you, until someone or something arrives to free you from the rocky place where you find yourself. Farewell!

 

Read also Labour’s Finest  https://think-left.org/2011/07/25/labours-finest/

6 thoughts on “The NHS Bill, ME/CFS and Professor Pinching’s Farewell message

  1. This Government and its departments will never let the person with ME rest mentally physically or emotionally and that is what we need most to help us cope with this illness. They are literally killing us.even in Life we are the living painful suffering dead. This is most atrocious . We need compassion and care while we wait for treatments and cures and we need biomedical research into the cause of the illness.

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    • Irene, you are right. The treatment of ME sufferers has been atrocious. However, I do think the research aspect is beginning to improve… and particularly younger doctors are much less inclined to accept the biopsychosocial nonsense. There is a lot of hopeful research and new possibilities of diagnostic tests. I was reading only yesterday of a new study indicating involvement of the temporal lobes in the brain in ME sufferers which differentiated them from a control group diagnosed with depression. I hope that Professor Pinching’s compassion and care was clear enough from his letter. Best wishes Syzygysue

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      • That research was not done in the UK though was it. It was Prof Komeroff in the US. Biomedical research in the Uk has mainly been done By ME patients organisations funding it themselves . Prof Pinching may be compassionate but he is in the minority. I have had ME now 24 years now and had to live through NHS DSS etc. We should not be having this battle but we are

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  2. Simon Wessley has recently attacked PWME who use the internet. This is what the internet has achieved for us . So far with the Chase community giving and this VIvint PWME have as an internet community of ME sufferers managed to raise $175,000 for the WPI institute in America .many of us are so sick just getting the computer turned on and going through the voting every day has made us sicker. It has been worth it. We need to raise £100.00 for our own invest in ME to start a UK version of WPI. Why isn’t our NHS willing to set this up for us. We do not have one biomedical research and treatment centre in the UK for ME not one. yet the psychs have had more than 6 million pounds and their research has proved there wrong.

    You cannot cure ME by making us think differently and by doing graded exercise.Yes we should forget the past we cant change it but our Government could correct this humongous mistake and put things right by matching those psych funds and giving that amount of money to Biomedical researcher that will find what is going wrong and maybe lead to treatments and cures. They could give £100,000 to Invest in ME to kickstart this centre of excellence. its peanuts compared to what they have wasted an could defuse a very sensitive situation here in the UK.

    We can only forget the past if things are to change right now

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  3. Pingback: Academisation and the Neglect of Sick Children | Think Left

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