Barnet PCT deny my grandmother life saving treatment
This is a guest post by Francesca Rose Lewis.
Britain prides itself on social health policy. The NHS is our pride and joy, and however bad the economy gets, spending on healthcare services is always ‘ring-fenced’. Americans, we think, could learn a thing or two about how to treat the sick, the poor and the elderly. When the frightening spectre of Sarah Palin loomed, conjuring phantom ‘death panels’, we scoffed. Such a thing could never happen in a properly run national health service.
So it was surprising that earlier this week, the NHS effectively sentenced my grandmother to death.
In most films I’ve seen, it’s the white-coated doctor who gravely intones the number of weeks you have left to live. Usually, violins are playing in the background. This time, it was hardly as dramatic. In modern day Britain, it seems that the responsibility for life and death medical decisions no longer resides with doctors. It is now the local Primary Care Trust (PCT) who look at the bill, and decide whether your life is cost-effective.
Clearly, nobody from Barnet PCT has met my grandmother, Celia. She was born in 1919, the youngest of twelve children, in that vanished community that used to live around Aldgate East. She made dresses for forty years, and married a soldier in the British Army, and raised successful children.
Up until January, Celia lived by herself in a little flat. She walked, and talked, went out for coffee and sometimes to painting classes. The other elderly people living in her complex were, in her opinion, leading boring lives. She liked to say that she was 90 years young, and the cliché fit. We had to physically restrain her from driving, because she loved the freedom of getting behind the wheel.
And then she fell over, and was admitted to hospital. She had an emergency procedure, but her aortic valve remained blocked, and she suffered from chest pains. Celia finally agreed to move into a residential care home for a few weeks to recuperate. Of course, she hated it – she wanted to go home. These people who lived there permanently fell asleep in the middle of the day! Many had Alzheimer’s or Parkinson’s disease, and so weren’t scintillating conversation. She wanted to be back in control of her own life. This is what the bureaucratic notion “value-added” was invented for.
The doctors at St Thomas’ specialist cardiology unit wrote to say that her best option was a non-invasive procedure, to re-open the blocked valve (a TAVI). They applied to Barnet PCT for the funding, who sent them a letter explaining that because the procedure in question was relatively new, they had not yet added it to their list of options. Funding denied.
Her doctors received this news with astonishment and dismay. Over 10 000 people have successfully had the TAVI procedure, with no side effects. Long term doesn’t mean much for a 90 year old. The alternative is traditional open-heart surgery that she probably wouldn’t survive. Celia’s quality of life without the TAVI is to remain bedridden; with it, she could move back home and hopefully continue a relatively active existence. Without the surgery, her life expectancy is reduced to weeks.
Of course, there are arguments for not giving elderly people life saving treatment. It’s expensive. There are young people who need treatment too, and they’ll live longer. Yet others like my grandmother lived through the Blitz, and have paid tax since the foundation of the National Health Service. How dare that organisation then turn to them and refuse to administer a relatively risk-free treatment, purely based on the issue of cost?
Barnet Primary Care Trust isn’t a ‘death panel’, but it is most certainly behaving like one.
Reader Comments
So sorry to hear about this – anything we can do?
(brilliantly written piece, btw.)
The first point of recourse is to ask the cardiologist’s advice and that of his team. It’s likely that he’s come across this before, and may know where to apply pressure.
Secondly, write to the director of the PCT, and/or to the Department of Health. This is of course an awful position for the health service to be in, and should be taken up with on a political level.
On this political note however, I think the issue is not about ring-fencing funding, ‘death panels’ or treatment being refused to patients (elderly or otherwise) on the basis of cost. Rather, this is the fault of the ‘post-code lottery.’ The reason that the TAVI is funded by some PCTs is because they have hospitals conducting experimental research trials of the treatment, and consequentially patients in those PCTs are eligible – if it is the only option for the patient, as in your grandmother’s case.
Barnet, it would seem, is not one of the PCTs running the trials. Once the treatment has been tested, and the results are seen to be statistically satisfactory, then treatments are made available across the NHS. At an experimental stage, this is considered to be the sensible way to do things, rather than make an untested treatment available.
Being a resident in Barnet should, of course, not prejudice the NHS against a patient, and this kind of funding lottery should be challenged on a political level.
Guys, thanks so much. I will keep you posted! I am of course writing to the PCT, Dept of Health, and trying to get local newspapers involved.
Fran, Our Dad is in a similar position to your Gran. He has been denied TAVI surgery even though he is a redo patient (having had by-pass surgery 10 years ago). A far less risky and invasive procedure than open surgery. We have taken this up with our local MP and asked that this be elevated to national issue as an exmaple of bureacracy creating a post code lottery and adding to NHS costs.