Patient Stories – John
A Nottingham man diagnosed with carcinoid cancer in 2000 was refused NHS funding for what could be life prolonging yttrium therapy. He was ‘devastated’ by the decision and decided to go public with his case.
We can now report that the PCT involved has overturned its decision and that patient John Woolder will soon be starting on a three stage course of treatment. This follows coverage of the case by his local radio, TV station and newspapers and publicity given to his case on this website.
One of the consultants looking after him had branded the case as a clear case of ‘postcode prescribing.’
Mr Woolder, aged 71, also won the support of his MP Patrick Mercer who took up the case and wrote to the PCT involved, Nottinghamshire County.
Mr Woolder, a retired self-employed textile agent, underwent major abdominal surgery in 2000 after suffering a series of problems initially put down to irritable bowel syndrome and constipation.
In 2001 it was discovered that the disease had spread to his liver.
In August of that year his consultant in Nottingham told him that there was ‘no current treatment available’ and that the disease would shorten his life.
After struggling to get funding for ocretotide injections, to control flushing symptoms Mr Woolder supported by his wife Annie sought a second opinion at the Royal Free Hospital one of the largest NET units in the country that has seen around 800 patients.
Here he underwent a successful tumour ablation in 2002. But his tumours continued to grow.
The Woolders learnt that there WAS a possibility of further treatment – with a radio labelled peptide called Y-90 octreotate, which is targeted at the tumours directly.
Mr John Buscombe, consultant physician in nuclear medicine at the Royal Free Hospital said over 200 patients have now been treated with this and other similar treatments, resulting in control in symptoms and reduced growth of tumour in about 60% of cases.’
Under the current system PCT’s have to pay for their local patients to have this treatment. The cost is £15,000 for a course of three treatments and Mr Buscombe said over the past 12 months over 30 have approved funding.
Nottingham’s refusal to pay was ‘unusual’, he said.
‘In addition when asked to suggest a viable alternative for Mr Woolder’s treatment the PCT have refused to comment.’
He added ‘We therefore ask for his PCT to re consider their refusal and agree that he be allowed the only treatment we believe, with our considerable experience, has a chance of working.’
Mr Woolder said he was very pleased with the care he was receiving at the Royal Free and has every confidence in their judgment.
‘However recently my tumours have grown and my LAR injections have been increased to 30mg.
‘Dr Caplin and the multi disciplinary team of consultants have indicated that I would benefit from yttrium therapy but funding by my PCT was refused.
‘I was devastated by their refusal but my wife and I continued to fight their decision in the hope they would relent, because although this cancer may not be curable, it is controllable. At the moment I am extremely fit and well but I have a time bomb ticking away inside and I would like it diffusing’
In a letter to MP Mr Mercer the Nottinghamshire County PCT said that it had a duty to fund the treatment and care of patients on an equitable basis and it had set up a committee to consider cases on a ‘case by case’ basis. It had since reviewed Mr Woolder’s case and decided to fund treatment.
· The Woolder case has echoes of the experiences of two other patients in Wales. They were both initially turned down for funding for yttrium therapy by the Health Commission Wales. One of the patients – Vince Davies, 62 – went to his local paper who regularly ran stories about his case, which was also taken up by Welsh MPs. Earlier this year the Commission overturned its previous decision and Mr Davies started his yttrium therapy in April.
Are you having problems with your NHS Trust or your GP in obtaining funding for the recommended treatment for NETs?
The NET Patient Foundation would like to hear from anyone else who is suffering from similar problems.
Please call our helpline 0800 434 6476 and leave your name and number and say you are calling about funding issues. A member of staff will get back in touch with you.
The charity feels that if we can find enough case histories it will strengthen our position regarding the funding of important cancer treatments for our patient group.
