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