8:36pm Friday 23rd November 2007
By Richard Gurner
A pensioner is facing the prospect of going blind before Christmas after the NHS refused to pay for drugs that would save her sight.
Mary Bristow-Jones, 88, suffers from wet age-related macular degeneration (AMD), the biggest cause of blindness in the UK, and is already blind in her right eye because of the condition.
But West Sussex Primary Care Trust has told the former secretary she does not qualify for help to save the diminishing sight in her 'good' eye.
Mrs Bristow-Jones, of Forester Road, Southgate, Crawley, said: "I feel very said and very shocked. In the summer I had to go and have an unrelated operation in East Surrey Hospital and they were so kind and so good to me and did everything.
"They got me better but now I'm told that somebody doesn't care. I'm already blind in one eye and the other is getting worse.
"The other eye went suddenly and it could go any time really. I hope it lasts a reasonable time."
She added: "I went to the Sussex Eye Hospital in Brighton and had all the tests. When they were finished I asked what the treatment was and the doctor said there was no treatment available.
"He did say I was a very good case for funding and wrote an email to West Sussex PCT. A week or two went by and I had a letter saying that I had been refused."
AMD can be treated with one of two drugs, Avastin or Lucentis.
Avastin is available privately but not on the NHS as it is only been licenced for the treatment of bowel cancer.
Lucentis's use is currently decided by individual NHS trusts as the National Institute of Clinical Excellence (Nice) is yet to issue guidance on its use in the NHS.
PCTs are using provisional guidance from Nice to make their own decisions.
A spokesman for West Sussex PCT said: "We understand the distress caused to Mrs Bristow-Jones by the decision not to fund Avastin for AMD.
"In the absence of Nice guidance, requests are considered through the West Sussex PCT's review panel for patients with individual needs.
"The panel takes into account a number of factors including the clinical and cost effectiveness of the drug, information presented by the professionals involved in the patient's care and any national or local guidelines that exist.
"In the interim while awaiting Nice guidance on Lucentis for AMD, the PCT is funding Lucentis for patients who meet the criteria set out in the Nice Appraisal Consultation Document on Lucentis for AMD.
"Unfortunately Mrs Bristow-Jones does not fulfil the eligibility criteria."
Her daughter, Suzanne Perkins, has paid £550 for a dose of Avastin privately to prolong Mrs Bristow-Jones's sight but cannot afford any more.
With the help of the RNIB, an appeal against the decision has been launched.
A spokesman for the RNIB said: "We urge the PCT to reverse its decision and to provide funding for Mrs Bristow-Jones as a matter of great urgency, so there is every possible chance of her remaining sight being saved by treatment recommended by her doctor.
"As with many older people who have wet AMD, for treatment to be effective and to have the best chances of saving a person's sight, it must take place as soon as possible.
"Any delays in treatment are unacceptable."
Each Lucentis injection costs the NHS £1,500 and patients may need several for their sight to stabilise.
West Sussex PCT came under fire Wednesday this week for its use of spin doctors arguing for the closure of accident and emergency and maternity wards.
PR company London Communications Agency has received more than £125,000 from the trust to present the Fit for the Future programme with a positive slant.
West Sussex County Council leader Henry Smith said: "It's difficult for me to comment on individual cases as I'm not familiar with the circumstances but as a general rule it does concern me that the PCT seem glad to spend a considerable amount to sell a bad idea of downgrading hospitals in Sussex when patients need treatment."
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