A single mum from Bracklesham Bay believes she is the victim of a health ‘postcode lottery’ after being told she will not get the funding needed to pay for a life-saving operation in just three months’ time.
Angela Tyerman who has arteriovenous malformations (AVMs), an extremely rare cardiovascular defect that affects less than one per cent of the population, has been turned down by NHS Sussex to receive around £15,000 to partly fund the operation.
Doctors have told her that if her condition isn’t treated by August it could prove fatal and the only option to cure the condition is to be injected with liquid onyx.
“I was told I basically have no other option, there’s no other cure,” Miss Tyerman said. “I was told early last year that left untreated I had around 18 months until my health starts deteriorating. Then it would be fatal.
“I have always worked, I am a single mum and I have always paid my taxes and national insurance. Why am I not entitled to this operation on the NHS?
“If my local NHS can’t treat me, why can’t I be sent to an NHS hospital that can?”
The Queen Victoria Hospital in East Grinstead, which has taken care of Miss Tyerman since she was a child, felt it had no option but to refer her to the best specialists in the UK – at Birmingham’s University Hospital – to deal with her condition. Miss Tyerman, of The Tide, said it had been a ‘really emotional time’ for her and her teenage son.
She could suffer from a stroke, heart attack or haemorrhage at any time if she is not given the onyx operation. She could go blind or be paralysed from the operation, but said she knows the risks involved.
Miss Tyerman, 38, feels if a new application for funding is refused she will have no other option but to take the matter to the high court for a judicial review. She hopes this will help other people who suffer from rare conditions.
A spokeswoman from NHS Sussex said: “We fully appreciate that patients and their families want to explore every possible option for treatment, and in some cases this may be drugs and treatments that are not routinely funded on the NHS or approved by NICE.
“For cases like these, such as Miss Tyerman’s, we have a robust process which takes these requests to a specialist panel of consultants, GPs and lay people. Together they look at the clinical evidence for the treatment or drug being requested and consider it thoroughly.
“In line with this process, the panel considered Miss Tyerman’s case in detail, taking into account a review of all of the published evidence. The review found that there were no national or international published guidelines about onyx treatment or its effectiveness, and so after having considered all of the relevant factors, the panel found that there wasn’t sufficient evidence that the treatment would be effective for Mrs Tyerman’s condition and did not approve funding.
“We have not received an appeal from the patient or her treating clinicians.”