Treatment delays leave Macular Society volunteer with irreversible sight loss

Posted: Tuesday 29 August 2017

A Macular Society volunteer was forced to invade the headquarters of his local healthcare commissioners on two separate occasions to demand answers after he suffered irreversible sight loss as a result of delays to his treatment.
Chris Thorley, aged 56, filmed himself on his mobile phone as he entered the head offices of North Staffordshire clinical commissioning group (CCG) demanding to see a senior manager. He had waited more than nine months for ‘urgent’ treatment.
Chris has a rare sight condition caused by extreme short-sightedness, which affects his central vision. His treatment was no longer working and his eye doctor asked for permission to switch him to a newer drug. 
The new drug is already in use in Scotland and Wales but not yet in England. Following a visit to his eye doctor it was agreed an individual funding request (IFR) would be made, for him to receive the new drug to help save his sight. The request was supported by national sight loss charity the Macular Society, which wrote a number of letters on Chris’ behalf.
Chris said: “I waited patiently for nine months, but no one was responding and my sight was deteriorating rapidly. I was desperate so I decided to visit their head offices and demand answers. I filmed myself and put the video on Twitter. I wanted to find someone I could speak to.”
Chris has now had an apology from the CCG. In a letter the CCG reveals that his request for the new drug was originally refused because the CCG decided Chris was not ‘exceptional’ and many more patients might benefit from switching drugs. In these cases the CCG needs to devise a whole new policy. Unfortunately the policy was never developed and Chris was left to lose his sight.
Chris says many people are in his position: “I know there are other people who have suffered avoidable sight loss because of delays somewhere in the system. Patients shouldn’t have to invade the NHS offices to get a proper response.”
The CCG has now agreed to fund Chris’ treatment on an individual basis up to December 2017. He attended a scheduled appointment on 29 August and will receive his first injection this Thursday (31 August).
The Macular Society has come across many patients in similar positions and is now calling for action to be taken to prevent avoidable sight loss.
Chief executive of the charity, Cathy Yelf, said: “We’re extremely concerned that this situation has arisen and that communications with the CCG and Trust went unacknowledged for so long. It is very distressing for patients to be in this position and, of course, when patients go untreated for many months they inevitably suffer irreversible sight loss.”
Cathy added: “It is unacceptable that patients in England cannot have a treatment that is routine in other parts of the UK. Day after day we hear of shocking variation in the quality of care offered to people with macular disease. NHS eye clinics are overwhelmed but there are numerous ways in which services may be improved, clinically, holistically, and indeed, financially. What is required, above all, is direct and accountable leadership, with the authority to intervene at both local and national level, across providers, commissioners and indeed, NHS England. 
“We are calling today for the urgent appointment of an Eye-Health Commissioner, able to lead ophthalmologists, optometrists and the wider NHS eye-service so all our patients receive the highest level of care, and taxpayers receive value for money in the service that is provided.” 

The charity has written to health secretary Jeremy Hunt and the chief executives of NICE and NHS England.