Spreading the pain

Patients need health workers to take action on their behalf, says Mike Marqusee
November 2010

Since politicians in general feel obliged to genuflect before the altar of cancer, it’s not surprising that the government has made strenuous efforts to cast itself as a defender of cancer patients. Some of its measures are genuinely beneficial. Innovative bowel screening procedures will save thousands of lives, and extra money for new, expensive life-extending cancer drugs will benefit thousands more (including me).

But the government’s headline cancer pledges are minute compensation for its spending programme’s detrimental impact on cancer patients in general.

Far from being ‘ringfenced’, the NHS will be forced to make – and already is making – substantial cuts in services. The 0.1 per cent per annum real terms increase is nowhere near enough to keep pace with demand (a significant part of which comes from the increasing numbers of people diagnosed with cancer). What’s more, this paper-thin increase is qualified by the previously announced demand for £20 billion in NHS ‘efficiency savings’. A government health insider admitted to the Guardian that in the coming years ‘a fifth of everything the NHS does today will stop’.

Like all those with serious long-term illnesses, cancer patients are bound to suffer disproportionately. Longer waits –the government has already abandoned the one week target for cancer test results – will add to the 10,000 lives lost every year as a result of late diagnosis and treatment.

Closures of wards, departments and hospitals will mean more exhausting and costly travel. As health workers try to treat increasing numbers with ever more restricted resources, quality of care is bound to diminish.

A small example from my own experience. One of the less pleasant features of having a haemotological cancer is the need for periodic bone marrow tests, which involve the insertion of a needle into the pelvic bone. I’ve learned that the longer the doctor takes in applying the anaesthetic, the less the pain – and an extra 15 minutes makes the difference between the excruciating and the just about bearable. Under increasing financial pressure, that extra 15 minutes will become a luxury. The cuts mean, quite brutally, more avoidable pain for more people.

Even more frightening

The implications of the government’s proposed reorganisation of the health service (costing £3 billion, five times the amount promised for new cancer drugs) are even more frightening. Once cancer symptoms are detected, patients are referred to hospitals for long-term treatment. In my case, for three and half years since my initial GP referral, overall responsibility for my health has been undertaken by Barts hospital in London, whose staff have dealt with all manner of unpredictable symptoms, aches and pains related and sometimes unrelated to my underlying disease.

Under the government’s proposals for GP commissioning, self-financing hospitals will have to refer back each case as it evolves to GP consortia for renewed commissioning – or risk not being paid for the services they deliver. Operating within budgetary constraints, the GPs will then have to decide whether treatments are necessary, affordable and the cheapest available. So basic decisions about my care will be made by a doctor who is not actually involved in treating me.

Meanwhile, hospitals are being encouraged to increase their revenues by taking in an unlimited proportion of private patients – who will, of course, only pay if the care they are offered privately is superior to what they can get for free on the NHS. The resulting two-tier system will inevitably end up downgrading the majority of cancer patients, forcing others to reach deep into their own pockets to ensure they receive the best available treatment.

Cancer patients require multi-disciplinary care involving diverse specialists often scattered across different sites. The proposed fragmentation of the NHS can only obstruct the timely delivery of integrated care and in the end make it more costly. Fragmentation will also spell the end of national bargaining, conditions and career structure. Cancer patients are profoundly aware how much their welfare depends on the commitment and diligence of NHS workers. In the long run a poorly rewarded, insecure, overworked and in many cases casualised staff can only provide a lower standard of treatment.

The biggest single boon for present and future cancer patients would be raising care across the country to the standard of existing best practice. The government’s plans will make that impossible. The postcode lottery will be exacerbated, and with it the already unacceptable inequalities in outcomes for cancer patients.

The poorer you are, the more likely you are to get cancer and the less likely you are to survive it. Unskilled workers are twice as likely to die from cancer as professionals. Between 1999 and 2003, mortality from all cancers was 70 per cent higher among the most deprived men and 40 per cent higher among the most deprived women when compared to the least deprived groups. What’s more, cancer patients with lower incomes are less likely to die at home or in a hospice and more likely to die in hospital.

Even the fact that cancer survival rates are improving for all social groups (albeit at an uneven pace) will become a mixed blessing, given reduced resources to meet the demands of long-term illness. Cancer patients will be hit hard by local government cuts, which will restrict services such as occupational therapy, transport and recreational facilities. And the absence of local government-provided care options will lead, in turn, to increased ‘bed-blocking’ in hospitals, yet another squeeze on NHS resources.

Tougher tests

The government is looking to make major savings by imposing tougher tests for disability benefits. Already, Citizens Advice reports that under the new regime many people with cancer and other long-term conditions are being ruled ‘fit to work’ when they are nothing of the kind. The government is also time-limiting disability benefits and excluding from benefits people with assets, savings or partners who work. At the same time, higher unemployment totals will make it harder for anyone with a long-term illness to ‘compete’ in the jobs market. All around, it’s a policy package that spells personal disaster for large numbers of cancer patients.

On top of this, government cuts in science funding will impair research into cancer prevention and treatment – in lethal disregard of the dictum of US health activist Mary Lasker: ‘If you think research is expensive, try disease.’ Meanwhile, the most promising recent scientific advance, individual genetic assessment leading to personally customised therapies, will remain beyond NHS means and unavailable to the great majority of UK cancer patients.

The numerous cancer advocacy groups perform minor miracles in raising awareness and funds. But the government’s plans present a challenge to their customary approach. If they are going to serve their constituents effectively, they will have to overcome the reluctance to engage in ‘politics’ and take an active role in the broader campaign against the cuts.

Finally, an appeal from one very grateful patient to NHS workers: the government takes advantage of your sense of commitment to your patients, but by letting them do so you are doing no favours for those patients. Reluctance to take any action that might disrupt patient care is understandable, but by not taking action you may be doing harm to your patients’ long-term prospects. You may feel you have little power, but collectively you have much greater power than individual patients. We need you to take action on our behalf, action that is a necessary extension of the sense of dedication that guides you in your daily work.



Mike MarquseeMike Marqusee 1953–2015, wrote a regular column for Red Pepper, 'Contending for the Living', and authored a number of books on the politics of culture, on topics ranging from cricket to Bob Dylan.


 

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Robert 26 April 2011, 07.26

The problem right now is of course getting a party to vote for, Red Pepper stated New labour is dead, is it?.

I think socialism is struggling right now even on here I came to have a look at found not a lot about welfare, I suspect like my MP who agrees we have to many people sitting at home when they would be better working, which is nice, of course while you try to find a job you can have JSA.

Not to sure anymore how I will be voting at the next election, but I know for sure it will not be purple or blue labour thats for sure.

As for AV I would not even bother voting for this I’ve no interested in stupid ideals we need PR not this silly little gimmick


Grant Loewen 5 February 2012, 15.41

Dear Mr Marqusee,

Thank you for your insight and courage fighting your disease and writing about the experience.

My partner died of uterine cancer five years ago and the fragmentation of her treatment, although centred in one hospital, resulted in many hours of excruciating and avoidable pain and many bad decisions by us and care-givers relative to pain. You are right, the staff, especially in palliative, are wonder workers, but the communication of all involved is hamstrung. I’ve been thinking that it’s lack of money (resources, time) too, but there are also the debilitating effects of pain itself, especially pain associated with cancer and the possibility of dying, that trigger cultural fears of death and dying. I hope that when it’s my turn there will be a more conversant and fearless relationship between myself and my caregivers, and between them.

The reluctance to treat pain freely, honestly and quickly should be a best practice. Getting at the culture of fear around dying, becoming aware of our thoughts and feelings about it, even changing them could be part of the solution.

All the best to you,

Grant



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