- Dawn Thomas has almost lost vision in her left eye and is having trouble with her right eye
- South Staffordshire PCT said her case was not 'exceptional enough' but are now reviewing the decision
|
An Army wife with a rare eye condition faces going blind unless health chiefs fund sight-saving treatment.
Dawn Thomas says her local Primary Care Trust (PCT) has denied her the medication despite it being available on the NHS in other parts of the country.
The mother-of-one fears her family will have to sell their home to pay for private care as a result.
Dawn Thomas, is already suffering from sight problems, and is now battling for treatment on the NHS
'If the PCT doesn't fund the treatment it will condemn me to blindness,' the 44-year-old said.
'I would have to give up my job and driving - it would be life-changing and devastating.'
South Staffordshire PCT initially told the lance corporal's wife that it would not fund the treatment injections that can cost up to 800 each.
However, the trust has since decided to review its decision after it received further information about Mrs Thomas' case from the Macular Disease Society.
Mrs Thomas, from Branston, Staffordshire, who has almost lost vision in her left eye and is having trouble with her other eye, said: 'We are now thinking of selling our house to fund the treatment privately.'
Although Mrs Thomas was diagnosed with pseudoxanthoma elasticum (PXE) when she was 21, it has only given her serious cause for concern in the past 12 months.
After suffering headaches and worsening vision in her left eye at the turn of the year, she saw a consultant at Burton's Queen's Hospital who allegedly attributed her problems to her glasses and told her to return in a year.
Concerned, Mrs Thomas saw her GP and two months later was seen at the Royal Derby Hospital by another consultant, who spotted abnormal blood vessels and the appearance of a bleed in her left eye.
Treatment: Lucentis injections proved effective in treating PXE sight problems in trials
Another expert at the hospital confirmed the findings and said treatment was available - but not on the NHS.
He supported Mrs Thomas's funding bid to the PCT but it sent her a letter saying her case was not 'exceptional enough'.
Mrs Thomas said: 'I've worked all my life, always paid my national insurance and thought I would never have a problem getting treatment on the NHS.
'I thought the NHS was healthcare for everyone but since I've gone through all this I feel like they don't care about people.
'It's about whether they meet their expenditure targets. They just seem so heartless. As far as I know, people in other PCTs are getting it - so why can't I?'
An NHS spokesman said the original decision not to fund Mrs Thomas's treatment was 'being reviewed'.
'This is following the receipt of further information from the Macular Disease Society, who are acting on behalf of Mrs Thomas,' he said.
'The decision will be reviewed and examined by our clinically-led panel and a decision should be taken within a month.'
SOME OF ENGLAND'S POST-CODE LOTTERIES
CANCER
Patients with suspected cancer in parts of England are 60 times more likely to be sent for scans than those living elsewhere, according to a study by the National Cancer Intelligence Network in July.
While a GP practice in Sefton, Merseyside, referred 5,591 per 100,000, another in Hillingdon, London, referred only 89 per 100,000.
DIABETES
Only six per cent of sufferers received the recommended levels of care in some areas compared to 69 per cent in the highest-achieving primary care trusts (PCTs), a National Audit Office (NAO) report found in May.
The worst offenders were Mid Essex and Swindon PCTs.
ARTHRITIS
There is almost a three-fold variation in the amount of money primary care trusts across England spend on arthritis services, a study revealed in April.
NHS Hartlepool spent 764 per patient in 2009-10, but NHS Peterborough only 275, according to the Arthritis and Musculoskeletal Alliance.
Mrs Thomas needs anti-vascular endothelial growth factor medications (anti-VEGFs), which slow sight loss by stopping blood vessels forming or growing. The deterioration, known as wet macular degeneration, can be treated by three drugs: Macugen, Avastin and Lucentis.
Repeated injections into the eye are usually required. The treatment has been found to be very successful at preserving vision of PXE patients in clinical trials.
PXE is a hereditary disorder in which the elastic fibres that normally occur in the skin, eyes and cardiovascular system gradually become calcified and cause characteristic symptoms in each area. It is estimated about one in 25,000 people in the world have PXE, but recent indications are that it is more common.
Approximately 60 per cent of PXE sufferers develop eye problems and many experience the loss of some central vision.
The Royal National Institute of the Blind said South Staffordshire PCT had made a 'cruel decision.'
Steve Winyard, head of campaigns and policy, said: 'The refusal of her PCT to fund an effective and proven treatment is a cruel decision that is likely to mean Mrs Thomas has to stop working.
'There will be a massive impact on her quality of life and a big long-term cost to the taxpayer.
'If there's an approved treatment available which will save a person's sight then it should be given.
'It's vital people diagnosed with sight-threatening conditions have the opportunity to receive proven and timely treatments.'
A post code lottery for medical care is not acceptable!!
- Lizzy , London, 06/8/2012 16:55
Report abuse