Post date: 
Thursday, 20 August 2015

Dick Barbor-Might assesses the progress made in Scotland for eye patients since he was diagnosed with Wet AMD eight years ago.

In 2007, the sight in my left eye began to deteriorate: Dry age-related macular degeneration (AMD) was turning into Wet. After diagnosis, I received five Lucentis injections at Edinburgh’s Princess Alexandra Eye Pavilion. These stabilised the condition. I decided to write an article about the excellent work of the Scottish Medicines Consortium, which had authorised the use of Lucentis in June 2007. The article appeared in the Scotsman and NB.
Now I want to find out what progress has been made since then.
RNIB Scotland’s Director, John Legg, told me that eye tests continue to be free and that Lucentis is being widely and successfully used along with another drug, Eylea.
“Free eye tests were a major first for Scotland and a huge step forward in detecting sight loss conditions,” he said. “This makes a crucial difference to the early diagnosis of sight-threatening conditions, giving a much-increased chance of saving someone's sight through early intervention. Approving Lucentis and Eylea for use on the NHS in Scotland also has given hope to many AMD patients when no other treatments were available."
A system has also been established for electronically transferring the results of eye examinations from optometrists in the High Street to ophthalmologists in the hospitals. As Legg explained: "This new system has already saved the sight of patients who require immediate treatment.  It is also helping to save money by identifying priority cases, treating reversible sight loss, cutting back on unnecessary referrals and reducing paperwork."

Access to treatments

I wanted to know how many people are being diagnosed and treated for eye disease and how many people are registered as “severely sight impaired” and “sight impaired”.  
Do people have equal access to sight-saving treatments, or do budgetary or other constraints mean that some health board areas limit availability? In other words, is there a postcode lottery? And is there significant variation in different areas in the numbers of Lucentis and Eylea injections that are given to patients? Without consistent statistics gathered across Scotland against common criteria, it is hard to tell.
I discovered that the relevant statistics – for all eye diseases – are available at the level of the country’s 14 regional health boards, but not for the whole of Scotland.     
Professor Carrie MacEwen, President of the Royal College of Ophthalmologists and the Scottish Government’s principal adviser on eye health care, commented: “The number of injections carried out in Scotland per annum is recorded in a variety of different ways. They are not collected together in any way, correlated or reported.”  
She has been asked by the a Health Minister to carry out a review to bring about improvements in collation of eye health care statistics and registration for visually impaired patients. She has already recruited a Government health statistician and hopes to bring about improvements in the registration process.  
The registration process is in need of change. In January 2012, Clair Henderson, Senior Research Officer for RNIB Scotland, submitted to the Scottish Government’s Primary Care Division a review of the registration and certification processes. The review deemed the registration process to be “not fit for purpose”. The review had three aims: 
  • Identify factors that have influenced the apparent reduction in people being registered blind or partially sighted.
  • Consider what requires to be done to implement the changes in certification and registration recommended in previous reports, and the likely impact of change on the numbers of people being registered.
  • Propose a framework of action to undertake consultation on any proposed change. 

The importance of registration

Since the report was published, there have been ongoing discussions around registration with a range of relevant parties.
Does registration matter? I know from personal experience that it does matter, very much. The register is the link between hospitals, social services and local societies, and acts as a passport for benefits, concessions and support. The RNIB review highlighted the serious and sometimes devastating consequences for visually impaired patients who, for whatever reason, are not registered – or who are registered late, well after the onset of eye disease. The adverse effects are likely to be worse, as the review states, for the “35 per cent of all registered blind and partially sighted persons who have additional disabilities”.
There are different reasons why patients do not register:  
  • There is not the time and capacity available in the eye clinics to deal with the emotional and practical problems faced by patients for whom registration may be an option.
  • Patients are not made aware of the registration option and of its advantages to themselves or they are not made aware of the registration process early enough.  
  • Patients are simply not ready to acknowledge and label themselves as being blind or partially sighted.
The review points out that eye doctors might not regard registration as a priority in their work with patients.   
It has also been suggested that many ophthalmic consultants are unable to systematically take an active role in explaining the benefits of registration given pressure, demands and limited clinical time with each individual patient.  
Professor MacEwen said she thought that there are a lot of misconceptions. “Many people refuse to be registered,” she said. “This is something we have to respect. Once we start indexing people, we are going to be interfering with people’s ability to make choices. Secondly, when we see somebody who comes in with a new diagnosis and a new loss of vision, we have to make a decision – do they need help now?”
She upholds the value of registration and is confident that the original criteria, laid down in the 1948 National Assistance Act, have stood the test of time. She emphasizes the critical role of ophthalmologists and adds that diagnosis and treatment are complex and can be protracted. Through her review she intends “to make sure we are picking up people early, to get them into the system, and to make sure that they are given emotional, practical and financial support if required – early on”.
She added: “If they are struggling with loss of vision and we say register and become a ‘blind person’, that often doesn’t go down well. So we introduce it gradually. The key thing, which is going to be part of my review, is to make sure that we are picking up people early.”
Core funding is vital
Professor MacEwen greatly appreciates the work of the Vision Support services. My own experience from when I was registered in 2008 is confirmed by what I have learned about the current practices from RNIB’s Vision Support staff. They cooperate closely with the ophthalmologists in the provision of practical and emotional support and thus also facilitate the process of registration. But the centres are present in only five of Scotland’s 14 regional health boards. What is needed is core funding to roll out this vital service across Scotland.
I write not as a professional or a researcher but as a 79-year old visually impaired ex-patient. My conclusion is that until the national level statistics are available, it will not be possible to resolve questions about the numbers of people who are diagnosed, treated and registered. The professionals cannot know for sure if there is a postcode lottery or if there is or is not a serious problem of under or late registration. Finding out more might require further research. As a firm supporter of RNIB Scotland, I hope this great team will continue to be part of the ongoing inquiry.  
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