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Petition by Macular Society calls for end to unnecessary sight loss in the UK

Posted: 09/01/2018


The Macular Society has handed over a petition to the Department of Health, calling for prioritisation of eye care and an end to unnecessary sight loss in the UK. The petition was launched after one of the society’s volunteers invaded the headquarters of his local healthcare commissioner to demand answers after he suffered irreversible sight loss as a result of delays to his treatment. The petition was signed by over 11,133 supporters, many of whom had similar stories of delays in treatment.

The gentleman in question, Mr Chris Thorley, aged 56, has a rare sight condition caused by extreme short-sightedness, which affects his central vision. The treatment he had been receiving stopped working and his condition had begun to progress more rapidly. Mr Thorley was aware of another type of medication, widely available on the NHS in Scotland and Wales, but not in England. His treating ophthalmologist requested the alternative medication from the North Staffordshire Clinical Commissioning Group (CCG), and the request was supported by the Macular Society, which wrote a number of letters on Mr Thorley’s behalf.

After nine months of waiting without a reply to the request, and with his situation becoming more desperate as his sight continued to deteriorate, Mr Thorley filmed himself on his mobile phone as he entered the head offices of North Staffordshire CCG demanding to see a senior manager. He learned that his initial request for the alternative drug was refused because the CCG decided his case was not ‘exceptional’, and authorising treatment would set a precedent, ie many more patients might benefit from switching to the alternate medication.

The CCG did eventually agree to fund Mr Thorley’s treatment, and apologised to him, but he will never recover the vision he lost during that nine month wait.

Arran Macleod, a solicitor in the clinical negligence team at Penningtons Manches LLP, said: “This episode highlights both  the importance of timely and appropriate treatment for ophthalmic conditions that cause gradual but irreversible visual deterioration and  the issue of the NHS postcode lottery.

“We act for a number of patients who have been diagnosed with deteriorating conditions, such as age-related macular deterioration, and who have suffered unacceptable delays in their diagnosis or the time from diagnosis to treatment. Such conditions can also affect central vision and, once that vision is lost, it cannot be recovered. For the types of conditions where deterioration is gradual but permanent and irreversible, early treatment is imperative and is associated with far better outcomes. A number of our clients have suffered avoidable sight loss, similar to Mr Thorley.

“It is also worrying that in some parts of the country patients are denied appropriate treatment. It should not be the case that treatment routinely available in some areas is refused in others, but it seems this situation is unlikely to change and we will sadly continue to hear about cases such as Mr Thorley’s.”


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