The NHS Mandate

Jeremy Hunt, Secretary of State for Health, has, I hear, agreed to go (or send his minions) to talk to the junior hospital doctors at ACAS, the reconciliation service - at last. It takes a long time, it seems, for ministers to listen. So it was with a certain amount of scepticism that last week I read and tried to understand the Government's consultation document on the future of the NHS, and then filled in the response form. I found out about the consultation only after reading about a Guardian article on the subject by Ann Robinson, not thanks to the Government making it known. I received an automated acknowledgement after I'd submitted my response. I wonder, actually I very much doubt, whether any human being, besides you will bother to read it, let alone take any notice of it. Already Mr Osborne's Autumn Statement has had implications for health and social care provision in the local government settlement, which close down investment.

Anyway, here is is my response:

1) Do you agree with our aims for the mandate to NHS England?

I disagree with a number of implications in the priorities and aims: 1.    That ‘preventing ill health and supporting people to live healthier lives’ is only the remit of the NHS. If other budgets are cut, e.g. education and social care, than that aim cannot be achieved. 2.    That the present GP system does not provide good 24/7 care. As a patient with a chronic illness, this has been far from my experience. This aim appears to militate against small GP practices. 3.    Defining as ‘long-term’ a mandate lasting ‘three or more years’ invites the possibility of continual uncertainty and upheaval to the service. It needs guaranteed stability. I would question also the assumption that the patient knows best implied in the priority: ‘People should be given more power and control over the care that is provided to them’ whilst agreeing that it should be that ‘services are arranged around their needs and they are supported to manage their own health.’ I agree that the mandate should be clearer and more accessible to the public.

2) Is there anything else we should be considering in producing the mandate to NHS England?

Clarity and accessibility means avoiding language incomprehensible to the public, such as: ‘in-year deliverables and metrics to measure progress’ whose meaning eludes an English graduate.

3) What views do you have on our overarching objective of improving outcomes and reducing health inequalities, including by using new measures of comparative quality for local CCG populations to complement the national outcomes measures in the NHS Outcomes Framework?

The aim of increased transparency is a laudable one, but it needs to be accompanied by increased trust, particularly of health professionals. The aim of delivering equally good service nationwide is also clearly desirable. There is a danger in this target-driven objective of unfairly stigmatizing skilled professionals in challenging situations and driving them away from where they are most needed. There is a further danger of diverting professionals from their primary calling of care into a culture of form-filling. This is counterproductive in the pursuit of excellence. There is also a danger of league tables being used as ammunition in political argument, which ultimately demoralises rather than encourages. This is the stuff of bad management.

4) What views do you have on our priorities for the health and care system?

In headline terms, your priorities are ‘motherhood and apple pie’ You want to create a healthier society, particularly focusing on younger people. However, this seems less a function of the NHS than of Education and recreation. Dementia care and research is clearly an increased priority. I am glad the government wants to put effort into those – as well as other areas of mental health. The neglect of mental health ought to be redressed; but this will need considerable financial investment both in the NHS and in community social care. Transparency and simplicity from the patient’s perspective is desirable. However the security of digital records also needs to be paramount. The government’s principle should be to rein back on centralised record-keeping, rather than extending it. The citizen’s privacy should normally trump efficiency. Retelling one’s symptoms is a small price to pay for individual liberty. However, creating new rights, such as the ‘right to a specific named GP’, runs the risk increasing the burden of litigiousness surrounding the medical profession as does the comparison of the health service with the airline industry – with the possibility of suing for late appointments for example. The healthcare industry is entirely different from a commercial enterprise, and should not be shoehorned into becoming one. Whilst I am in full agreement with the aim of preventing ‘avoidable ill health and premature mortality’, I think the assumption that increasing longevity is a desirable aim should be questioned. Officiously prolonging life is not a great good and should not be ‘a metric to measure progress’. Good end of life care, however, should always be a top priority.

5) What views do you have on how we set objectives for NHS England to reflect their contribution to achieving our priorities?

As already indicated, I have some reservations about the possible implications of where the objectives are specific. Otherwise they seem general enough to be open to whatever interpretation is required by policy makers. I do notice the final objective for the NHS to make money, or to be involved in its generation. Finally it needs to be said that this consultation process is particularly opaque. The consultation document is not easy to follow, what the questions are asking isn’t obvious and where to send this response form is equally unclear. You could for example simply say, ‘Thank you for taking the trouble to complete this form. Please now send it to mandate-team@dh.gsi.gov.uk.’

Squeezing the PIPs

Well, today sees the beginning of DLAs (Disability Living Allowances) being replaced by PIPs (Personal Independence Payments), the moment that disabled people on the whole have been dreading, largely because we're entering unknown territory. To be frank, none of us believe that it is not a cost-cutting exercise. We suspect that the PIP assessors will have been told to be "rigorous" (wink, wink, know what I mean?) and even given reduction targets to aim at. That impression isn't helped by reports that George Osborne refused to face Baroness Tanni Grey-Thompson, the disabled Paralympian, on TV (News report).

(Stop press: Just heard that Margaret Thatcher has died. Her PA who used to live in Stanford was an equally redoubtable woman. She found the young vicar somewhat tiresome but tolerable.)

I have just completed a survey for the MND Association which was asking about how we'd been looked after from before diagnosis and how we'd like to be cared for until we die. It occurs to me that this is at least one disability which usually is so rapidly changing that PIP assessors could no more keep up with it than the hard-pressed health and social care services. You see my brand of MND, Primary Lateral Sclerosis, is astonishingly unusual. It's over ten years since I received my diagnosis. The average life expectancy for MND patients from diagnosis is 14 months, i.e. from the time the doctor tells you what's wrong you're on this dizzying helter-skelter of losing your abilities until you die. The great thing about Disability Living Allowance was that assessing yourself with your doctor's advice you got access to a non-means-tested benefit quite straightforwardly. It was quite early on that I couldn't walk unaided, even with a stick. So I receive the highest mobility allowance, which enables us to lease a bigger car which I can get into and out of and we can fit my disability equipment in. It has considerably enhanced my quality of life.

Now imagine someone with a more normal rapid form of the disease. She's diagnosed. The PIP assessor comes round and our patient is still mobile and able to function reasonably at home, but within weeks she's losing her mobility and having falls round the house. Will the PIP fellow drop everything and come and reassess her? What do you think? Will he take her GP's or specialist's word for it? What do you think? On the present performance of assessors such as ATOS (the American multinational IT giant subcontracted by the government to assess suitability to work), it appears that on principle they discount the opinion of those who know the patient and the condition best. (See the Parliamentary Debate). As it is, I have had friends whose motability vehicles have arrived too late, and whose last months of life have been rendered harder than they were already by the slow delivery of service. Many of us fear that with the introduction of new, improved and supposedly more "flexible" system, even more will lose the crumbs of comfort to which they might have had access. And of course MND is not the only condition that involves rapid degeneration.

One after-thought: the disabled are often painted in the media and by ministers as "on the cadge". Of course you may be able to track down one rogue in a thousand. But the 999 would far rather be fit and healthy, able to live a healthy life and be able, like the Chancellor of the Exchequer, to park in disabled bays illicitly. By contrast, I know one driver with a disabled passenger who will actually refrain from using a blue badge, if the passenger is not disembarking. Integrity is not unknown among the disabled community. And what strange official mind dismisses the professional expertise of those who know best? Well, PIPs roll out in Oxfordshire in June. Perhaps then I'll be saying, "I told you so," - or will it be, "I was wrong"? It would be nice if it were the latter.

"Vested interests"

According to The Independent George Osborne, Chancellor of the Exchequer, "was also fiercely critical of churches and charities which have opposed the Government's welfare cuts, describing them as simply 'vested interests' reacting with 'depressingly predictable outrage' to necessary change", in a speech staged a Morrison's distribution depot in Kent yesterday. The board in front of his lectern read, "For hardworking (sic) people". I'm sure his English teacher at Barnes Boys' Secondary Modern would have taught him that composite adjectives should be hyphenated, not to mention Gradgrind Gove or Bruiser Boris. However, far more importantly, he'd surely have heard in his youth the words of the prophet: 

"Woe to those who decree iniquitous decrees,
    and the writers who keep writing oppression,
 to turn aside the needy from justice
    and to rob the poor of my people of their right,
that widows may be their spoil,
    and that they may make the fatherless their prey!" (Isaiah)

That sort of "outrage" is the stuff of true religion. "Predictable", maybe; "depressing", indeed. But it's what church and synagogue leaders should be saying. 

What is very curious, to my mind, is his description of churches and charities as "vested interests". After all, if the welfare state is as inflated as he seems to believe, the charity sector should have less to do rather than more. Trimming the welfare state does not create more income for the charity sector. It simply creates more demand for the sector whose resources are squeezed as a result of cut-backs. Charities were predictably among the first candidates for central and local government "economies", on the specious grounds that they were "non-essential". That might have been so in a minority of cases, such as the Great Snoring Lace Making and Limbo Dancing Club, but the majority serve real needs.

So, what exactly did the millionaire Irishman mean by describing churches and charities in that loaded fashion? Primarily one would guess that his faceless speech-writer was fishing for an emotive phrase to dismiss the considered and evidence-based criticisms of those who are nearest to the casualties of government policies. There's no doubt that the nationwide networks of churches and charities are far nearer to the ground than Whitehall speech-writers and politicians. It seems to be lazy pejorative rhetoric. However it's worse than that, because it's actually nonsense. What the Chancellor is not gracious enough to admit is that he will be relying on those very "vested interests" to be the first responders, paramedics and emergency wards for meeting the needs of the casualties of his "necessary change". That's why those "vested interests" have been setting up so many food banks and why homelessness charities are busier than they have ever been, with less funding. It's why medical charities are ever more called on to give the support previously provided by the NHS. It seems the only vested interest that churches and charities have is as providers. 

It's true enough that's what they are there for. But that is not what Mr Osborne was saying. Otherwise he would no doubt have been thanking them - and even resourcing them. The truth is equally that they are there to speak for the needy, the poor, the widows and the fatherless. They are there to speak against oppression and to campaign for justice. 

I'm not here writing about the rights and wrongs of government economic and welfare policy. I don't pretend to have a clue about politicians' true motivations and intentions. But to rubbish those who are raising legitimate concerns as having "depressingly predictable outrage" is to descend to schoolboy debating of a debased level. If we learned anything from the last century, it might be summed up in Pastor Niemöller's famous dictum: 

First they came for the communists,
and I didn't speak out because I wasn't a communist.

Then they came for the socialists,
and I didn't speak out because I wasn't a socialist.

Then they came for the trade unionists,
and I didn't speak out because I wasn't a trade unionist.

Then they came for the Jews,
and I didn't speak out because I wasn't a Jew.

Then they came for the Catholics,
and I didn't speak out because I wasn't a Catholic.

Then they came for me,
and there was no one left to speak for me.

Speaking out is how civilised societies are preserved. Meanwhile, one wonders what "vested interests" George Osborne and his colleagues might like to declare....