This shocking failure is highlighted today by the
Macular Society’s new chief executive, who says the situation is “utterly shameful”.
Often older people are seen too late and an inconsistent approach to diagnosis and treatment of macular conditions means there is a dangerous postcode lottery.
“This is utterly scandalous,” says chief executive Tony Rucinski.
“What really gets me is that these conditions are prevalent among older people – those people get sent home, having lost their sight, with no support and are in some cases just waiting to die, and their sight loss need not have happened. They do not have a loud voice and I am determined to raise the profile of this issue.”
He adds: “It is not the clinicians’ fault - I have regular contact with them - they come to us asking for help in raising the issue with commissioners.”
Rucinski is a former director of Scope and trustee of the RNIB, was recently appointed to his role at the
Macular Society.
His first major campaign at the helm is about smoking.
While the links between smoking and cancer are well-known, many people don’t realise that smoking also causes blindness.
The
Macular Societyconducted some research among children on this issue – Rucinski says the results were “amazing”.
“They were aware smoking causes fatal illness, but that did not bother them as much as having to live with sight loss or blindness. They were more fearful of going blind than of dying.”
The research shows that 98% of children do not know that smoking causes sight loss.
“We want children to be aware of the danger to their sight if they smoke.
“It seems to be assumed that the fatal conditions related to smoking should be the priority for health education messages but the survey with children, and other similar surveys, actually suggest that focussing more on sight loss may be a more effective way of deterring children and teenagers from smoking.”
The
Macular Societyis undertaking another survey as part of this campaign to get responses from around 20,000 children on their attitudes to smoking.
“600 kids start smoking every day,” Rucinski explains.
“Before we formally launched this campaign we started a
Vivo survey– it is a school-related social network site.
“Already we have had more than 8,000 responses, which makes it the biggest survey of child-related smoking habits in the country. So already the level of participation from young people is quite significant.”
Rucinski says with 600,000 people living with macular disease across the country and 200 more added to that number each day, the NHS should be emphasising the “significant and major risk” to sight posed by smoking.
He wants an EU directive that puts sight loss warning on cigarette packaging to be introduced as soon as possible.
There is also more work for the NHS to do to try to end the “postcode lottery” in macular clinics.
“A small number of people with ‘wet’ macular disease can be treated if it is caught quickly enough,” Rucinski explains.
“But we are finding that people are not getting the required injections quickly enough – the lottery is in how quickly you are getting seen. I am regularly meeting people who have gone blind because they were not seen quickly enough. Over 50% over sight loss in this country is caused by macular disease - I want to get rid of half of that and we are going to raise fund and get rid of it
“It might not happen to day or this year, but the science is there.”
Another thing Rucinski will be campaigning for is the appointment of a leader within the NHS for the eye care clinical pathway.
“At the moment there is no one with an oversight, with overall responsibility. There is someone in charge of teeth but not of eyes. England and Wales is such a postcode lottery - there are areas you are seen very quickly and others where it is utterly shameful to think that people are regularly going blind.”
For more information on the
Macular Society's
work, click
here
.