Chichester’s Macular Disease Society offers life-line for those with failing sight

A testing time for Patrick Butler who now suffers from the disease.'''C120245-2 Chi Feature Macular  Photo Louise Adams
A testing time for Patrick Butler who now suffers from the disease.'''C120245-2 Chi Feature Macular Photo Louise Adams

For those suffering with serious sight conditions, life can present some disturbing and unexpected challenges at every turn.

From simply navigating down the road to the shops or feeling isolated at being unable to find everyday items in your own home, it can leave many people feeling exceptionally vulnerable.

Consequently, a small group of like-minded people diagnosed with macular sight loss, a condition relating to the gradual deterioration of the retina, have banded together to form a branch of the Macular Disease Society serving the Chichester district.

There are still many who have relatively little or no knowledge of the disease, yet it affects an incredible 500,000 people across Britain.

Nationally, the organisation is celebrating its 25th anniversary and those at its heart believe word is steadily getting out about the groups which have stemmed from it.

It is presently receiving added focus as Dame Judi Dench has been confirmed as suffering with the condition, which has no permanent cure and can result in complete loss of central vision.

The veteran actress, currently starring in The Best Exotic Marigold Hotel, revealed she is losing the ability to recognise faces, and has to have her scripts read to her so she can learn the lines.

The Chichester group, which meets on the first Wednesday of each month at Pilgrim Court, Tozer Way, has around 80 members. It believes there may be many more people across the Observer area who are suffering with the condition who could benefit from its support.

Pat Butler, of the group, felt it offered considerable reassurance to its members who come from a wide variety of backgrounds.

As an entirely self-funding organisation, its small membership fee has helped fund vital free transport arrangements through Sammy’s community transport firm based in Bognor Regis.

Among its major concerns is the fact its members have to travel more than 20 miles to attend evening clinics for treatment at Worthing Hospital. They are hopeful eye clinic services at St Richard’s will resume later this year.

“As much as anything else our group offers support and advice for those who are partially sighted,” enthused.

The 81 year-old of Vicars’ Close, Chichester added: “We have members who have good peripheral vision through to those who can hardly see anything.

“I have had macular degeneration for a number of years now and could drive until a couple of years back.

“The real benefit of our group is for those who don’t feel they have any contact with others.

“I have the ‘dry type’ of the condition and there’s nothing you can really do for it.

“But having previously worked for IBM, I have managed to prepare for this for some time and have found things that can help me.

“I think it has made a significant difference to those people who don’t seem to have any help in practical terms from organisations in the area.

“For instance, we have one man here who was really nervous about bumping into anything, but through being in the group he has gained a lot of confidence.”

He explained the society has a number of talks each month from charitable groups such as 4Sight, who have talked about some of the low-vision aids available these days which include gadgets such as hand-held magnifiers through to text readers.

Praising his wife Jean for her support, he believed that although the situation was improving, there is still a general lack of understanding about the condition and its effects on people.

Fellow group member Barry Buck, 84, added: “I’ve had this macular condition for about six years and have enjoyed coming to the group here in Chichester.

“I am able to get out on the bus at the moment but I really miss not being able to drive and read. That’s what you find the most difficult to deal with.”

He explained many of macular suffers, including himself, felt fortunate the NHS authorities in West Sussex had been able to offer injection treatment which is highly valued by patients, who in other parts of the country are forced to pay significant sums for alternate treatment.

He added that anyone suffering with a similar condition would be welcome to meet with the group, which would do all it could to offer some much-needed support.