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Move to Scotland or go blind: English patients are being forced to leave the country

Move to Scotland or go blind: English patients are being forced to leave the country to get drugs to treat a rare eye condition 

  • Charity claims uveitis sufferers are being denied drugs by NHS England
  • Inflammatory eye condition can lead to loss of peripheral and central vision
  • Despite wide-scale prescription in other countries, NHS said there isn’t ‘sufficient evidence’ to recommend drugs needed

Reproduced from an article by Jack Crone for MailOnline

Published: 25 July 2015

People in England living with a rare eye condition may be forced to move to Scotland to ‘save their sight’, a charity has claimed.

The Royal National Institute of Blind People (RNIB) made the claim after the NHS refused to fund routine access to treatments.

The charity says it’s considering legal action over NHS England’s decision not to recommended routine use of the drugs Humira and Remicade for patients with a severe form of the inflammatory eye condition, uveitis.

Lack of treatment: English people living with a rare eye condition may be forced to move to Scotland to ‘save their sight’, a charity has claimed

Both drugs are prescribed in Wales and Scotland and are seen as standard practice in many other countries.

A UK trial of Humira was stopped early because evidence clearly showed the drug was benefiting sufferers – and it was deemed unethical to continue giving some children a placebo.

Despite this, NHS England decided there was ‘not sufficient evidence’ to begin offering routine use, The Independent reports.

Uveitis is one of the main causes of sight loss in Britain, say experts, and can lead to loss of peripheral and central vision or cause blurred or cloudy vision.

In the worst cases, patients can lose their sight altogether.

Individual Funding Requests (IFR) previously allowed some patients access to Humira and Remicade, but most are still denied the drugs.

After receiving a high number of IFRs, NHS England began reviewing the use of the drugs in 2013.

Its policy document, published in July, has upset campaigners and uveitis weekend.

Maria Dawson, the RNIB’s Eye Health Campaigns Officer said the decision was ‘totally unacceptable’.

She said: ‘We have already heard from one patient who is considering a move to Scotland in a desperate bid to save her son’s sight.’

‘There will be many more patients worried about the financial and emotional impact of this decision.’

The drugs costs between £8,000 and £10,000 a year if bought privately.

But a spokesperson for NHS England claimed the decision was not made on cost grounds.

It will still be possible for patients to apply for an IFR decision through their specialist.

But the RIB said NHS England’s new position means such patients are only likely to be given the drugs if they’re is another serious health condition that could lead to them being considered a special case.

The Royal College of Ophthalmologists, which represents the UK’s leading eye doctors, said it was ‘deeply concerned’ by the situation. A spokesperson said England was ‘now one of the few countries in the world that does not use anti-TNF treatments for uveitis.’ .

Patients in England with severe uveitis are usually prescribed steroids or immunosuppressants.

But RNIB says these are not suitable for all patients.

Research is currently being done on the two drugs and is expected to be published later this year.

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One comment on “Move to Scotland or go blind: English patients are being forced to leave the country

  1. Interestingly the national stats are out this month so I will be able to highlight them in the newsletter!

    Like

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