We need to fight for the NHS or it won’t survive

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An open letter to members of the British public from Dr Rob Galloway.

I am writing for your help in trying to stop the unprecedented damage happening to the NHS.  Please read, share, like, tweet and tell your friends. 

As someone who has the privilege of working for the NHS as an A&E doctor, I see first hand what is happening.  Please trust the real doctors and not the spin-doctors.

The NHS is on its knees and unless things change, it may not survive.  It has been attacked, part privatised, demoralised and starved of funds.

We have tried to highlight what is going on; through the media, marches, speeches and endless tweets and face-book posts.  But it is not working.  Things are getting worse and the NHS, which we all care so much about may soon no longer, be able to care for us.

The only things which might save it is if the British public no longer just accept what is happening – but start to fight back.  This is above party politics.  This is about what we want our society to be like.  Fight back for the greatest safety net we have – the knowledge that as a UK taxpayer if we get sick, then we will be looked after; an envy throughout the world.

The NHS was born on the 5th July 1948.  Heroes from World War Two, no longer wanted to accept a society where if you were rich you would prosper and if you were poor you were left to suffer.  It was born in a period of great austerity but money was found because health and welfare was made a priority above all else.

The attached letter was sent through the door of every citizen.  The opening lines were:

“It will provide you with all medical, dental and nursing care. Everyone – rich or poor, man, woman or child – can use any part of it. “

This promise is one we may soon not be able to keep.

The NHS has its problems and needs refom.  But its ethos was what made it great; patients before profits, co-operation instead of competition.  But the last few years has seen a determined effort to undermine all that is good about the NHS – its socialised system of working for the good of our patients.

The government have started a process of privatisation.  Billions have been wasted on re-organisations and competition and contracting out of services to the private sector which have destabilised the hospitals we all use.  Despite this, the NHS kept going because of the skills and commitment of its staff.

So to deliver the politically ideologically driven plan of reducing the size of the state and selling off the NHS to the private sector – the government have started to attack the staff.  Destroy the staff, you damage the NHS.  A damaged NHS is one which the public would go along with privatising.

If this happens, things will become like the USA where they spend double on health care to what we do, but the money is wasted on profit, beaurocracy and excessive wages and the standards of care are so much lower than in the UK, especially for the poor.

Why are they doing this?  It has been their plan all along.  The extreme right wing in this country do not believe in working together for the common good.  They do not believe in the concepts of the NHS.  They believe in individuals floating or sinking.  Jeremey Hunt even co-authored a book on this 10 years ago in which the authors said the NHS is “no longer relevant in the 21st Century.”

The new contracts they are proposing for junior doctors will mean an exodus of doctors from the NHS.  Without these doctors, standards of care will fall, waits will rise and patients will die.

They have said this about a 7 day working.  They are lying.  The new contract will harm 7 day working.  How do you improve care at weekends if you stop incentivising people to work in jobs with lots of out of hours work by saying evenings and Saturdays are normal working hours.

They have also lied by saying there will be an 11% pay rise.  Junior Doctors salaries have a large component made up of supplements because they work so many nights, weekends and evenings.  If you cut these payments by 30% and increase basic pay by 11% that is not pay rise.

And you can tell they are lying by simple maths my 6 year old can do.  They have said that everyone will get an 11% basic pay rise but the pay envelope will not rise.

So we need the British public’s help in understand what is happening because there is so much misinformation and lies out there spun by the politicians and propagated by sections of the press.

Public opinion matters.  There may well be a strike by junior doctors.  During the strike consultants like me will be doing what we can to make things safe.  No one wants the strike – especially not the doctors.  They have said they will negotiate with the government as long as the government say they will not impose a contract.  That can only be fair – but the government refuses.  A strike will be the fault of the government.

If the doctors strike , it would be to protect the NHS and not to harm it.  Protect if by forcing the government into a climb down so that they do not bring in these disastrous policies which will lead to so much damage to the NHS.

But it is bigger than just this issue.  We as a society must think about our priorities.  Do we starve the NHS of resources whilst having tax cuts for millionaires and multinational businesses?  Do we value and protect the bankers and speculators who have harmed this country so much or do we value and protect the doctors and nurses who heal the country?

We must start to fight back.  Do what ever you can to let people know what is happening.  Campaign on the street, pubs and ballot box.  Even if we win the junior doctor battle and even if Mr Hunt is forced to resign, that is only the first war in a generational battle for the NHS .

Remember what Nye Bevan said on the day the NHS was founded.  The NHS will last as long at there are the folk with the with faith to fight for it.  We as members of the British public need to have the faith and we need to fight for it.

If we don’t, the NHS which our grandparents so proudly formed, will no longer be there for our children.  They may never forgive us.

Yours sincerely

Dr Rob Galloway, A&E Consultant

Jeremy Hunt’s Plan for the NHS

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It may not look like it, but Jeremy Hunt DOES have a plan for the NHS – Caroline Molloy  First posted 23 October 2015 on openDemocracy/OurNHS

The Tories would have us believe that they are backing away from NHS privatisation.  In fact, they’re stealthily laying the groundwork for maximum profit opportunities – and comprehensive healthcare may be their first casualty.

Don’t worry about the fact that 82% of GPs are planning to leave or cut their hours in the next five years. Don’t worry that junior doctors aren’t any happier. And don’t worry that every week reveals another NHS hospital deeply in the red – even ones we thought were ok.

Don’t worry about any of that, because Jeremy Hunt has a plan.

It’s the NHS’s own plan, he repeats in every media interview. It’s the plan it would be a ‘disaster’ to deviate from, he told us before the election.

But what is this plan?

We’ll get to that in a minute.

First, let’s look at what we’re being told it’s not.

It’s not like that toxic Andrew Lansley stuff, the pro-competition 2012 Act, the “reorganisation so big you can see it from outer space”. No, that was Cameron and Osborne’s “worst mistake”, they’ve let it be known. It wasn’t really their fault, of course – they didn’t have “a clue” what the then Health Secretary was up to.

They were so cross with him, they made him a Lord. And he was such a fool, he’s just landed a job at private equity firm, Bain, advising on healthcare privatisation.

But let’s not worry about that. Lansley’s Act is “being ignored” anyway, the pro-market Health Services Journal tells us. Forget competition, forget the idea of external takeovers and internal dog-eat-dog competition between standalone trusts and powerful CCGs – under current Health Secretary Jeremy Hunt and NHS boss Simon Stevens’ plan, it’s all about collaboration now. Even KPMG (who’ve just poached another former Health Secretary, Steven Dorrellsay so.

So what is this plan? And, er, collaboration with whom?

Has Stevens – long-time Blair advisor and former United Health Vice President– really sent the private sector packing? And – after a few brand-damaging failures – have private health firms really scuttled away defeated from the £120bn “unopened oyster” of the NHS budget, deciding the NHS would be ‘shown some mercy’ after all?

It would be nice to think so. The more naïve sections of the liberal media have certainly bought that idea. When Simon Stevens launched his “Five Year Plan” last year, Andrew Rawnsley in the Observer said he had “only one fundamental objection” to the “generally excellent” plan – that it had the wrong picture on the cover. Polly Toynbee in the Guardian told us it was great because “the word competition doesn’t appear once in his 37 page document”. Shadow Health Secretary Andy Burnham appeared to sort of welcome the Stevens plan, then to sort of welcome it not quite so much.

Aside from this site, one of the few mainstream commentators to nail what the Stevens’ plan was really about was Fraser Nelson, in the Telegraph. “Like the best revolutions, it came carefully disguised,” Nelson observes. Yes, “the c-word didn’t appear once” but (like Nelson himself) Stevens still “firmly believes” in the competition/choice agenda – he’s just experienced enough to know that “the secret of successful radical reform is not to announce it with any fanfare.”

Nelson nails it when he says: “Stevens’ Grand Plan is to have no more Grand Plans but, instead, lots of smaller plans.”

So what are these smaller plans – and what do they mean for the future of the NHS?

Whilst even Jeremy Hunt and his regulator Monitor have tacitly admitted that standalone, competing Foundation Trusts aren’t working, Hunt and Stevens see more privatisation, not less, as the answer.

‘Collaboration’ turns out to mean hospital mergers into ‘chains’ – a theme developed in the Stevens report. The man tasked to develop the ‘chains’ plan, Sir David Dalton, has suggested it could lead to more private takeovers. Junior health minister Lord Prior wants private takeovers of hospital chains, too – and he also thinks they should close lots of beds.

As Circle have found in the UK with their disastrous Hinchingbrooke foray, at the moment it’s hard to make a profit from competing to provide full service local hospitals.

As United Health, Kaiser and others have found in the U.S. – profit opportunities are much bigger if you integrate both the purchasing and provisionof healthcare under private control or influence, enabling you to ration or deny more expensive healthcare interventions. And it’s much easier to do that if you use your control or influence to reorganise provision away from full service local hospitals, towards a chain of disparate community-based clinics and far-flung specialist centres. Of course you have to claim all the while that this is all about integration, prevention, empowerment, localism, personalisation, specialisation, reducing ‘variation’, and ‘care closer to home’.

Stevens is pushing this approach through a range of supposedly ‘integrated’ new ‘smaller plans’. Like the new multi-billion pound lead provider framework to ‘help’ with purchasing healthcare (which United Health subsidiary Optum has won a sizeable chunk of). And a ‘prime provider’ framework to ‘integrate’ purchasing and providing (which both Circle and Virgin have won contracts worth billions for already). Not to mention the the array of ‘local’ NHS ‘Vanguard’ projects, which Stevens explicitly suggests could be modelled on US firm Kaiser Permanante’s ‘Accountable Care Organisations’ or similar Spanish companies. The tech-heavy projects are full of private sector opportunities and partnerships – particularly outside of unprofitable acute care. Meanwhile, tariff cuts leave the sword of Damocles dangling over many local full service hospitals.

Profit opportunities also expand if firms set their own easily-gamed ‘outcome based’ success measurements. Out go what Stevens calls ‘mechanistic’measurements (like the requirement to have enough nurses, properly trained healthcare workers, and hospital beds).

Since the general election, Stevens and Hunt have been busy tearing up such requirements.

And in come easily gamed ‘outcome’ measures – exactly what we see in the new style contracts.

Profit opportunities also expand if co-payments (ie, patient charges) are permitted. The right are getting more confident in calling for such chargesLord Prior has tried to launch an inquiry to consider it – and the government has still not clearly disavowed such an inquiry. The growing number of exponents of charges and co-payments are usually keen to stress it would only be for freshly defined ‘non-core’ services which, if you look closely, turn out to mean things like a bed to recover in after your op (£75 a night please!).

And there are many other attempts underway to undermine the comprehensive, universal, publicly funded core values of the NHS, by bringing the ‘undeserving’ narrative from benefits, into the NHS. An early sign is the attempt to refuse people care if they smoke or are obese, for example (cavalier to the fact that it is poorer people who will be disproportionately hit by such clinically uninformed decisions). Whilst Devon’s attempt to do this failed, experts saw it as a sign of things to come.

Stevens has just given all of this a big boost by pushing integrated health and social care budgets (and indeed integrated benefits budgets in some devolved areas, like Cornwall). All of this may be nice in theory, perhaps, but it’s pretty terrifying in a climate of ‘austerity’, where social care users already can, and have to, top-up or co-pay for services (and benefits are already heavily conditional).

And integrated personal budgets – which Stevens has been pushing since day one in the job – are now being rolled out to millions. No-one has yet managed to explain how these are any different from the old Thatcherite voucher plan (which would basically finish the job of destroying the NHS).

Lastly, as a big bonus, once firms nabbing all these contracts have their hands on the patient data needed to commission healthcare (or obtained by delivering it ‘digitally’), they can also make a packet selling our information to data, insurance and pharmaceutical companies – or worse.

Of course this entire bureaucratic market nightmare costs a fortune to administer, though the scale of the fortune is a closely guarded secret. The Health Select Committee pointed all this out in 2010 (referring to earlier data – and we’ve had two or three more tranches of ‘marketisation’ since then).

So if that’s the Stevens plan, what’s our plan B to get out of this mess?

First, the NHS urgently needs a cash injection to get it through this current manufactured crisis (with the DoH handing billions back to the Treasury in ‘underspends‘ in recent years – ‘doh!’ indeed!).

Healthcare needs are not a bottomless pit, as the neoliberal ideologues claim – but the demands of health, insurance, pharmaceutical, data, consultancy and tech companies for profit streams, may well be.

Ultimately, all this destruction is possible, not because of Stevens himself, but because the Coalition government finally removed the duty to secure comprehensive healthcare which was offered to the nation in 1948 and persisted, just about, til 2012. We need to restore that duty.

And we need to recognise that hospitals have been brought low by a combination of PFI debt and the dog eat dog, beggar my neighbour nightmare of even the ‘internal’ market, let alone the external one. We need to get rid of that market – as Scotland has done.

The NHS Bill – sponsored by Caroline Lucas, signed by Jeremy Corbyn when he was a backbencher, and due for its second reading in March 2016 – is a serious attempt to do both.

The market, internal or external, disguised as ‘collaboration’ or not, is not an effective way to allocate healthcare – we’ve known that since the pioneering work of Nobel prize winner Kenneth Arrow in the 1960s. It forces hospitals to hammer down staff costs and offload unprofitable patients, and creates impossible choices between the bottom line and patient safety.

It’s only ideology and vested interests that would seek to persuade us that the answer is more of the same.

And if anyone – Tory, Labour, or ‘non-political’ – says they support the NHS, we need to ask – do you mean an NHS that is comprehensive, universal, publicly funded, high quality, timely and ethical?

If not, they are not defending the NHS as the public understand and love it. And that’s what we need to fight for.

 

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Who says what about the NHS – Labour leadership contenders

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With under a week to go till the Labour leadership election closes, how much do we know about the candidates’ positions on the NHS?

“PFI on steroids”?  More like an NHS debate on tranquillisers

By Caroline Molloy

first posted 4 September 2015 at openDemocracy

In last night’s last televised Labour leadership hustings, Yvette Cooper launched a broadside against Jeremy Corbyn’s idea of a ‘People’s Quantitative Easing’ to fund hospitals and other vital infrastructure, calling it ‘Private Finance on steroids’.

It’s obviously a soundbite she’s proud of, having used it earlier in the week.

But it’s a senseless, illogical critique.

Corbyn’s proposals to pump government cash into investment in vital public service infrastructure to boost jobs and the economy – are the mirror opposite of Private Finance, which sought private alternatives to government cash, even at the cost of inflated interest rates and inflexible, long-term maintenance contracts.

And logically, Cooper’s criticism only makes sense if you think private finance (PFI) schemes are ‘a bad thing’. (After all, you don’t criticise an opponent by calling their plans a super-powered version of a good thing!).

But – whilst Corbyn himself has put forward a powerful critique of PFI, and widely-praised proposals to save hospitals from it, Cooper shows no sign of thinking PFI is a bad thing.

Cooper was Chief Secretary to the Treasury in 2008/9 whilst it signed off nearly 50 new PFI schemes, including many in the NHS.

In 2009, she told parliament “PFI projects have consistently demonstrated value for money and high levels of user satisfaction in vital areas of public service delivery….” She added that it was best to stick with the PFI structure because the private sector will “continue to bear the risk of cost overruns and delays” (even as she handed the private firms a £2bn public bailout).

The Commons Treasury Committee disagreed, saying “Private Finance projects are significantly more expensive to fund over the life of a project…We have not seen clear evidence of savings and benefits in other areas of PFI projects which are sufficient to offset this significantly higher cost of finance.”

But Cooper appears never to have accepted these criticisms.

Even as she berated Jeremy Corbyn for ducking her questions about “free money” at last night’s Sky hustings, she ducked his question about whether she would pursue still more rip-off PFI, as her “credible alternative” to “printing money”.

And what of the other two Labour Leadership candidates?

Shadow Health Secretary Liz Kendall of course is always right on the New Labour message that Private Finance schemes were the only way to rebuild hospitals that had crumbled under Thatcher – an argument rejected by the BMA, the medical Royal Colleges, the National Audit Office, and campaigners, who point to the spiralling long-term costs now pushing hospitals like Peterborough and Barts to the brink of ruin.

Shadow Health Secretary (and former Health Secretary) Andy Burnham’s mood music has been different , and he has admitted that some PFI schemes were bad value (though when OurNHS asked him, he couldn’t name any that were good value). And when we asked him whether he would commit, at the least, to no more PFI, his team told us “that was a matter for the treasury” – hardly reassuring.

It’s a pity that in the debate the media has failed to properly grill the candidates on their position on PFI – just as before the election, they failed to ask Ed Balls if, having abandoned the idea of ‘invest for growth’ in favour of ‘no new government borrowing, even for capital projects’, he was still wedded to the ‘off-balance sheet’ trick of PFI (though experts suspected that is exactly what he meant).

Much of our media is befuddled on the NHS issues more generally – from privatisation and funding to staffing and the big questions of entitlement to comprehensive health care.

Corbyn is the only candidate to have signed the “NHS Bill”, developed by Professor Allyson Pollock alongside many other campaigners, and put forward as a cross-party bill by Caroline Lucas.

The Bill – which has won huge support amongst NHS campaigners – calls for THE restoration of the Secretary of State’s duty to ensure a comprehensive health service for all, which was finally abolished by Cameron’s 2012 Health Act.

The loss of this duty was behind situations like that in Devon, where last year the unaccountable and cash-strapped local ‘Clinical Commissioning Group’ tried to ban all obese people and smokers from having any routine operations on the NHS. And it’s behind the mounting rhetoric about the ‘undeserving’ (starting of course with politically unpopular groups like migrants, fat people and addicts) who should be made to pay for their health care.

Burnham has signed a Labour bill put forward by Clive Efford which provides some similar wording, and did manage to get a commitment to ‘restoring the Secretary of State’s duty’ into the health manifesto – though not the wider Labour manifesto.

Burnham won many friends amongst NHS campaigners for saying that “we let the market in too far” and that the NHS should be the “preferred provider” (along with charities). And for beginning to talk about privatisation (though too often the language was of ‘fragmentation’ or ‘top down reform’, which seemed a lukewarm language). Such language appeared a welcome respite from the Blairite mantra (still espoused by former Health Special Advisor Kendall, of course), that “what matters is what works”. The extensive evidence of privatisation’s unnecessary expense and failures is dismissed as ‘ideological’ by these ideologues.

But the Cross-Party Bill signed by Corbyn goes a lot further in saving the NHS from expensive privatisation. The NHS Bill calls for the hugely expensive and bureaucratic NHS ‘market’ of ‘Trusts’ competing with each other and private firms – a system Burnham and Cooper consistently voted for, and Corbyn consistently opposed – to be largely scrapped, as it has been in Scotland.

Meanwhile Burnham has repeatedly refused to say just how much the market and private firms should be allowed in to theNHS, or to speak out against plans currently underway to turn a clutch of NHS hospitals into independent ‘social enterprises’, or to address concerns that merging the NHS into already privatised social care might undermine our ability to see off further compulsory privatisation under existing EU law.

This integration of health and social care remains Burnham’s “big idea” for the NHS – an idea echoed by Kendall, Cooper, and indeed the Tories and Lib Dems. It’s a holy grail that has been chased for years, of course.

But worryingly, Burnham has been a lot clearer about his desire to leave a legacy of a ‘National Care System’ than he has about his commitment to ensuring that, whatever happens to social care, our ‘National Health System’ will remain comprehensive and taxpayer-funded, as polls show the public want.

Burnham told a Kings Fund audience that we would have to “have a big conversation” about what social care and health care we were entitled to, and how we pay for itafter the General Election.

And he recently told the Guardian that he wanted a “means-tested levy” to pay for his “integrated health and social care system”.

Perhaps Burnham didn’t mean to suggest that health care provision would in future be means-tested, just like social care. His personal manifesto, released a week later, was more carefully worded. But his lack of clarity and – yes – bite worries campaigners. When OurNHS exposed that the government was planning an inquiry into funding the NHS through means-testing, co-payments, insurance or other means than tax, Burnham’s response was curiously muted. Did the Shadow Health Secretary build on the widespread outrage at this apparent back-tracking on all Cameron’s lofty pre-election promises about protecting NHS principles? No – he merely asked for the “terms of reference” of the inquiry.

And whilst neither Burnham nor Cooper have shown quite Liz Kendall’s enthusiasm for an NHS funded through ‘Personal Budgets’ (an idea strongly redolent of Thatcherite vouchers and clearly opening the door to co-payments as with social care), there’s been no criticism from Burnham of this scheme, currently being rolled out by the NHS boss to millions of the sickest patients.

It is perhaps a little unfair to criticise Burnham for his silence on these issues, without acknowledging that (apart from Kendall’s cheerleading) the other candidates haven’t said an awful lot about them, either.

The failure here is the media’s. Despite being the number one issue before the election, little of this has come out in the debate. The candidates get away with mentioning the NHS only as part of a litany of great things about Labour they are proud of. They usually add in an emotive mantra about relatives that struggled in an era before the NHS, or couldn’t have survived without it.

This is no more convincing when it’s Yvette Cooper’s great auntie than when it’s David Cameron’s son. Without strong commitments to a comprehensive, universal, quality, ethical, timely and tax-funded, NHS, such mantras are merely a haze.

To be fair to Burnham, neither Cooper nor Corbyn have fully engaged with these issues, nor would they really be expected to understand the detail of issues outside their briefs. But Corbyn’s willingness to listen to the united voices of NHS campaigners who said “THIS Bill is a big part of the solution”, bodes well, if he should win.

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

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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/