Why cancer patients need a new friend
Forgive my unusual reticence but I want to recognise at the outset that this post is addressing an issue which is deeply personal and emotional for those affected, and that I have no proper expertise to justify me wading in. But after a lot of thought I concluded it was better to risk my views being wrong than simply to avoid the issue…
When something surprising happens on three occasions it may be time to question the assumptions which made it surprising in the first place. The surprise has been three acquaintances of mine who have, in way or another, defied terminal cancer diagnoses. In one case the person appears to be in long term remission and the other two people – while still terminally ill – are enjoying a worthwhile quality of life well beyond the prognosis they were initially given.
Although every case is different and each involves great individual courage and determination, there are also certain aspects in common. The patients and their loved ones went to great lengths to make sure they were genuinely getting the best advice and treatment available. Each person – being educated, middle class and reasonably well off – had an attitude of mind and a variety of resources which made it possible for them to challenge the original pessimistic diagnosis. In none of the cases was it simply that the patients threw money at their condition, much more significant was mining the internet and personal connections to find doctors with a particular interest and expertise in their specific condition.
It could be that these cases are exceptions. It might also be that the NHS errs on the side of pessimism when it gives terminal diagnoses, not wanting to add false hope to an already tragic situation. But there is another, more structural, explanation. People become doctors and nurses because they want to save and improve lives. The NHS is getting better – as are all developed world health systems – at treating cancers where there is now a good chance of survival beyond five years. For example, breast cancer survival rates for older women have improved substantially. The NHS is also getting better at empowering people with long term chronic conditions so that they can be more active managers of their own conditions.
In these cases NHS staff are saving lives and – in the case of chronic disease management – saving money through better forms of care. But these motivations are much weaker when a cancer diagnosis is terminal. By definition the person is not expected to get better, and for a cash strapped service the thin possibility of extending a diminished quality of life for a comparatively short time may not seem worth pursuing in the face of other pressures. These are some of the issues raised recently in the case of terminally ill Janet Tracey whose husband claims that doctors at Addenbrooke’s hospital, Cambridge, twice put ‘do not resuscitate’ orders in his wife’s medical notes despite her demanding it be removed after the first time.
The idea that structural, incentive-related, reasons lie behind undue fatalism towards people with apparently terminal conditions may be reinforced by observing the converse experience in the USA. Because many patients there are coved by medical insurance plans, which in effect offer a blank cheque for treatment, concern has been expressed at overtreatment, as people are subject to painful and invasive interventions with very limited chances of success.
If – as the experience of my friends strongly suggests – patients with terminal diagnoses who have personal resources are systematically able to extend their life beyond the expectations offered by the NHS, the obvious question is; ‘what can be done for those without such resources?’ How could they be supported and given what is surely their right – a chance to pursue every reasonable avenue before they accept death? Every year hundreds of thousands of people are given terminal cancer diagnoses. How many of them are being robbed of the vital extra time to organise their affairs, be with loved ones, or even fulfill lifelong ambitions?
The answer may be a specialist, independent service to which anyone with a terminal diagnosis can turn for expert advice and advocacy. Such a service would need clinicians at the helm, particularly to engage their medical colleagues, but could be largely staffed by people with a background in medical research or the pharmaceutical industry.
Each of my friends is haunted by the knowledge that they would not be alive today if they had not fought as they have and it leaves them with an understandable suspicion of future NHS prognoses. So, even if the service is not able to offer any more hope than the NHS, it will at least give patients and carers the invaluable peace of mind of knowing they really couldn’t have done more.
I suspect that if my post is noticed in such quarters, I will receive comments from people in existing cancer charity and patients’ groups saying that just such a service is on offer. It is certainly true that there are some great on-line resources now emerging, the best of which in the US involve doctors giving their time to join on-line conversations with patients about the latest treatments and trials.
However, cancer charities need to maintain good relations with the NHS and fighting hard for terminal patients’ rights may not fit easily with this. Macmillan is an amazing charity that does great work but – as I understand it – its focus is on care and support rather than advocacy or independent medical advice. Also, while there are good charities raising money for each into the cancers with the worst prognoses, the brutal truth is that patients’ groups will be weaker in these areas for the simple reason that people do not survive very long with the conditions.
I can even think of an equitable way of funding such an advice and advocacy service. After an initial consultation patients and carers who decide they want ongoing support could be asked to agree to donate a small percentage of the patient’s legacy. Such a system would thus take more from the well off to fund a service almost certainly most needed by the poorest.
Most of us don’t like to think about terminal illness (indeed I suspect we even harbour a superstitious fear that to think about it makes us more vulnerable). And I know I am going way out of my own areas of expertise in writing this post, but when I think of how valuable is the extra time is that my friends have now earned and how hard they and their loved ones had to fight to win this time, then I’m sure the issues their stories raise deserve a wider airing.
David Cameron at the RSA
The RSA this morning hosted David Cameron making a major speech about public service reform. The importance of the event was underlined by Michael Gove and Andrew Lansley being required to attend as audience members.
Although I have had one e-mail from an old friend telling me I have sold out to ‘the enemy’, it is a feather in our cap to be hosting the PM, especially as he took the time to say some complementary things about our work. It also gave me a chance to talk about RSA projects in front of the Westminster press corps.
I am sure there will be lots of press comment about the speech so I will restrict myself to a few short observations:
David Cameron is a brilliant communicator. He speaks clearly and cogently and answers questions directly and with humour. Whatever your political persuasion, when you listen to him you are likely to be at least half convinced and to hope that his confidence is well grounded.
This was very much a modernising speech of the Tony Blair style. Indeed David Cameron went out of his way to encourage such parallels by referring to Blair’s memoirs and the importance of not delaying or diluting necessary reform. There were references to the Big Society but it was very much a subsidiary theme.
While talking up the devolution of power to the local level, David Cameron seems also to share my old boss’s blind spot for local government. The only reference to local democracy I noticed was to the proposal for elected police commissioners. I also sensed some ambiguity – or even nervousness – about exploring the full implications of dismantling central control and devolving power, especially in the NHS.
On two topics – the process of change and making sure reform favours the least advantaged in society – the PM said all the right things. But still I wondered whether he had fully grasped how hard organisational change can be and also how difficult it is to decentralise while ensuring those places with the biggest problems and least capacity don’t get left behind.
Tony Blair too could be unrealistic about change and incurious about the system-wide impact of reform of the least advantaged. But when I or others used to challenge him he would point out that the civil service is there to worry about implementation and the rest of his Cabinet to focus on the protecting the principles of social democracy. But now, with a civil service being pared back to the bone and a Conservative led Coalition, it is important that David Cameron presses his ministers and advisors hard to prove and keep proving that his ambitious vision is also realistic and fair.
Mr Lansley’s tough assignment
Shadow Health Secretary Andrew Lansley is speaking here in a couple of hours. I will post again after I’ve heard what he has to say. He has a tough job. In a system as big as the NHS there will always be problems, but Alan Johnson has less to worry about than any of his recent predecessors.
Patient satisfaction rates are at an all-time high, long waits – for so long the scourge of the NHS and the target of its critics – have been virtually abolished; improved scrutiny and data collection has made it much harder to hide bad practice and failing management (which was previously rife); and there is even progress on hospital infection rates. At a time when the public and the media are loath to give Whitehall any credit, there is a general acceptance that the Department of Heath is managing the threat of swine flu effectively.
Of course, the real challenge facing the NHS is the coming squeeze in public spending. Will a system which has been developed in the context of substantial real term increases cope with standstill budgets? I don’t know whether Mr Lansley plans to broach the spending issue today but it’s difficult to see the upside for him of doing so.
The Conservatives have to plug away on health – emphasising their commitment to the founding principles of the NHS and to tackling health inequalities helps to cement their moderate, modernising image. But health has slipped down the voters’ list of priorities – the number telling Ipsos-MORI it is the most important issue facing Britain is as low now as it has been for over twenty years.
Andrew Lansley will no doubt say this morning that he wants to challenge the Government on its record on the NHS, and, of course, there are things that could be a lot better. But the reality is that Gordon Brown would like nothing more than for health to be the battleground of the next election.
Spending squeeze – how can we safeguard public health?
After giving my 16 year old son his birthday presents (the good news, folks, is that eventually, against all the odds, a fine young person starts to dawn from the dark night of teenage volatility and self obsession), I find myself on the panel for an NHS Confederation event titled ‘inequality, nudge and recession: is it time for a new approach to health politics?’.
There is some agreement among the panel of world renowned public health experts Professor Sir Michael Marmot, Phillip Blond (Demos’s progressive Conservative) and David Stout, Primary Trust Network Director at the Confederation. The themes chime with recent posts on this site. Building community resilience and capacity is central to improving public health, which is itself a more important determinant of health outcome and levels of health inequality than the health care system. But community capacity building is difficult; it is complex in itself, subject to all kinds of uncontrollable external pressures (for example, recession), long term and hard to evaluate.
The worry on the panel and among the audience was that – as has happened before during a fiscal squeeze – the acute sector is much better at shroud waving and thus gets its budgets protected at the expense of public health. (Interestingly, in its commendably forthright list of potential spending cuts the right of centre think tank Reform today proposes abolishing all national expenditure on public health campaigns).
Today is also the day when the public gets over-the-counter access to the weight loss drug, ‘alli’. There has been a predictable chorus of warning that the drug should only be used alongside interventions to tackle the behaviours that give rise to obesity. Which is fine, but while appreciating the limitations of new drugs like this, we should look to technological and pharmaceutical innovation to make major advances in health care productivity.
More and more of us, when unwell, will be able to use the internet to try to find out what our symptoms mean, go to our local pharmacy to have a cheap over-the-counter diagnosis test and then, after some advice from the pharmacist, buy and administer the treatment ourselves. After the initial diagnosis, this can be as true for long term conditions like high blood pressure and diabetes as for bugs, stresses and strains. This is already happening. The task is to re-engineer the processes of health care, maintaining the system improvements of the last five years, but enhancing individual control and responsibility and making genuine productivity gains.
In this new system there will be new risks. Those who are better off and more personally resourceful will find it easiest to thrive. Some people will get it wrong. They will pay for treatment they don’t need. Some may even end up harming themselves. But let’s remember that less than half of existing medical interventions are of proven benefit.
Interventions which tackle poor health through community capacity building tkae time, commitment and investment and involve the long term pooling of public health and local authority funding streams. The social priority for investment to improve the nation’s health should be prevention and the promotion of well-being among the least well-off. So instead of public health being the soft target when budgets get tight the primary and acute sectors must take the lead in delivering the productivity savings tomorrow’s NHS urgently needs.
The lessons we shouldn’t learn from the Stafford NHS Scandal
In less than an hour we have Health Secretary Alan Johnson speaking here on public health. I’m responding and his speech has just arrived so I will be brief.
I wonder whether we will get any questions on the terrible revelations about Stafford Hospital? When something goes wrong like this there is a tendency to look for system failures and to blame the Government. Sometimes this is justified, but in this case I’m not sure. Four points:
1. There is little doubt that overall the NHS is in a better state than ever before. If you don’t want to take my word for it read this leader in the Times from Monday (published hours before the Stafford revelations). The big question is how dependent these improvements have been on extra money and what will happen now the money is running out. Mary Riddell is pessimistic in today’s Telegraph.
2. The NHS is a huge system. This alone means that at any one time something will be going wrong somewhere. Just think of any large organisation you’ve worked in. To draw conclusions about a whole system from the worst performer is as invalid as drawing conclusions from the star performer.
3. Setting and enforcing targets is a complicated business. It is easy to get them wrong. Policy makers try to avoid perverse incentives and outcomes, sometimes by generating even more targets. Any enforced target will be vulnerable to people either trying to rig the results or over-rigidly adhering to the target against common sense or compassion (this seems to be what happened in Stafford) But the fact that targets have these problems doesn’t mean they should be abolished. Again we have to look at the system overall and here the evidence is that targets have contributed to genuine improvements in patient care and accountability.
4. The best way to avoid disasters like Stafford is to make it easier for patients themselves to blow the whistle on bad care. The Government is doing this. It was a theme of last weeks’ public service reform document. So hopefully, in future, scandals like this will be publicly exposed in months rather than years.
And we should beware those who use Stafford to call for a return to the good old days when doctors did what they wanted and were accountable only to each other. There is a piece in the Guardian along these lines this morning. An anonymous doctor blames Stafford squarely on targets and central interference. Among the many things in the piece that don’t add up is the statement that the NHS was much better when it relied on doctors’ goodwill followed immediately by the allegation that targets are driving doctors to choose to let sick patients die in order to care for the less ill. So we are required to believe on the one hand that doctors used always to be driven by only the best motives and then a paragraph later that it takes only a target for these same doctors to abandon their Hippocratic Oath.
Not everything is perfect in the NHS, tough questions should be asked of those who claimed to have inspected Stafford Hospital not to mention thsoe who awarded it Foundation status. But debate needs to be based on proper analysis not knee jerk response.
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