Denial of need for rationing leads to perverse behaviours.. soft target suffer without ethical debate.

Update May 11th 2016: Dementia sufferers abandoned by hospitals

Elderly patients subjected to harrowing ordeals

We all know we cannot have “Everything for everyone for ever” but the “patient centred” health services continue to hit soft targets, and avoid the discussions we need for honest debate on the ethics of how we ration. Doctors, and managers, who have been told there is no rationing, are in an invidious position when faced with intrauterine Edwards Syndrome and parents who want to keep their child alive as long as possible. If the money spent on lost causes were spent better we could save many more lives, but that does not mean we avoid compassionate state care provision for both cancer patients and the demented.. To achieve this we need local rationing of the high volume cheap and cheerful treatments, but possibly also national rationing of some of the most expensive care. To achieve this with compassion is only possible after prolonged debate… A potentially expensive precedent has been set. How long could we ventilate and prolong the life of Edwards syndrome if we directed all our resources in this direction?Scanner2

Denis Campbell Health policy editor in The Guardian 9th May 2016 reports: NHS mental health funding is still lagging behind, says report

Only 55% of mental health trusts have reported increases to budgets since 2012 when ‘parity of esteem’ with physical health was promised

Chris Smyth in the Times on the same date reports “End-f-life care skewed towards cancer”, changed to “Terminal care ‘doesn’t treat dementia patients fairly’” in the second edition.

Dementia patients suffer worse deaths because NHS end-of-life care is designed around cancer, a review found.

Almost half of hospitals are not good enough at caring for those with terminal illnesses, with many patients still suffering undignified deaths, the Care Quality Commission warned.

Gay people and those from ethnic minorities are also at risk of worse care because services are not focused on their needs, the regulator found. Professor Steve Field, its chief inspector of general practice, said: “A person’s diagnosis, age, ethnic background or social circumstances should not affect quality of care they receive at any point, but certainly not at the end of their lives.”

Cancer is responsible for fewer than a third of the 500,000 deaths in England and Wales each year but, families said, sufferers receive “better discussions, support, choices, information”.

End-of-life care was discussed with 92 per cent of cancer patients but only 74 per cent of others. Cancer patients also made up the majority of deaths in hospices, where end-of-life care is better — 90 per cent of hospices are good or outstanding, compared with 58 per cent of hospitals.

Another family told inspectors: “Dementia is a terminal illness and sufferers should be given the same help as someone with terminal cancer. I had to battle for everything my mum received and it was exhausting.”

Professor Bee Wee, national clinical director for end-of-life care at NHS England, said: “There is clearly more that can be done to ensure that all patients experience good quality care.”

Doctors who have been told there is no rationing, are in an invidious position when faced with intrauterine Edwards Syndrome and parents who want to keep the child alive as long as possible. Oliver Moody reports 10th June in the Times: Parents force NHS to fight for babies with rare genetic disorders

A couple’s fight to persuade an NHS hospital to resuscitate their daughter who was born with a rare genetic condition has set a precedent for other parents.

Rumer Gomez had Edwards’ syndrome diagnosed in the womb at 23 weeks. The disorder is closely related to Down’s syndrome and has traditionally been regarded by doctors as incompatible with life.

About 100 babies are born in the UK with the condition each year but only about eight will survive their first 12 months. The symptoms vary greatly from child to child but can include heart and lung problems, diaphragmatic hernias and severe developmental disabilities. The oldest survivors in Britain are two women in their twenties.

Women whose babies have the disorder diagnosed early in their pregnancy are usually encouraged to have an abortion, and Edwards’ syndrome babies born alive are routinely placed in end-of-life care…

…They won the argument and Rumer was born on September 24 last year. She needed support with her breathing but was discharged in early November. However, she suffered further breathing problems and died from a viral infection on New Year’s Day….

If the money spent on lost causes were spent better we could save many more lives, but that does nit mean there should not be compassionate state care provision for both cancer patients and the demented..

Chris Smyth reports 10th May in the Times: One third of heart attack deaths could be avoided

…Chris Gale of the University of Leeds, who led the study, said: “What we’ve highlighted here is the unacceptable deficit in the care being given to people after they’ve had an NSTEMI heart attack. We calculate that roughly one patient per month per hospital in England and Wales is losing their life as a direct consequence of this deficit…..

 

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About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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