New treatment denied on NHS
A man with a rare genetic condition that has already robbed him of his sight has been told the local NHS will not pay for innovative treatment at a London hospital.
Mr Andy McAneney, 46, of Meyrick Road, Newark, has Von Hippel-Lindau disease.
The hereditary condition causes tumours and cysts, which can be either cancerous or benign, to grow in the body and particularly effects the brain, spinal cord and eyes.
His brother and father have both died from the condition.
The condition was diagnosed when he was 16 after he lost the sight in one eye through an accident.
Prognosis depends on the size and locations of the tumours.
It caused Mr McAneney to go blind at the age of 30.
He had surgery at the QMC, Nottingham, on a tumour on his brain in April and further surgery in November on a second tumour.
He has a third tumour on his brain and three on his spine.
Instead of a third operation and the risks that involves his consultants have said the problems could be dealt with by gammaknife or cyberknife robotic radiosurgery.
The relatively new types of treatment are only available at a few hospitals in the country.
Since April several applications have been made to NHS Nottinghamshire County for finance to carry out the treatment at St Bartholomew’s Hospital in London, but all have been turned down.
Dr Phil Blackburn a neuro surgeon at the hospital and vice-president of the British Radio Surgery Society, has supported the applications.
The treatment would cost £11,000-£12,000 but Mr McAneney has been told the healthcare trust is not prepared to foot the bill.
He said he was angry and disappointed by the decision.
He said it would cost much more if he had to have an operation instead.
“I have already had to go under the knife twice and really don’t want to have to do that again when there is an alternative available,” he said.
“I feel let down. I have heard that other patients with other tumours have had the treatment so I feel this is a postcode lottery situation and I feel that it is wrong.”
He said he is concerned about his future without the treatment and fears he could be further disabled without it .
Mr McAneney has launched an appeal that is due to be heard on Monday.
A spokesman for NHS Nottinghamshire County said: “These are always difficult decisions to make, which we do not take lightly.
“When a treatment is not routinely funded, cases may be considered on an individual basis through our Individual Funding Request process.
“Patients are entitled to appeal against the outcome of this process and request a formal review.
“While NHS Nottinghamshire County does not comment on individual cases that are the subject of an ongoing review, we make every effort to ensure that patients understand the process and commit to keeping patients informed throughout.”
