A caring eye for detail

DICK BARBOR-MIGHT recalls being diagnosed with a degenerative eye condition and the care he receives at the Princess Alexandra Eye Pavilion

THE first time I realised that anything was wrong was when I poured a glass for my partner, missed, and ended up with a pool of wine on the table.

"Clumsy," I said to myself.

"Could it be your eyesight?" asked our philosopher friend Bill.

So I took myself off to the opticians, from where I was referred to Edinburgh's Princess Alexandra Eye Pavilion. The eye tests, which are free in Scotland, revealed I had developed "macular degeneration".

Speedy and correct diagnosis is absolutely essential with this condition. Nowadays this is precisely what eye patients can expect to receive, but it had not always been like this. George Kay, who chairs the Macular Disease Society (MDS) in Edinburgh, tells of how, back in 1959, he was alarmed when the straight line he was cutting in a slab of cake seemed to wobble.

A few weeks later, as he was walking home after his night shift at the bakery, he found he could no longer see properly with his right eye. Thereafter he made do with the left. None of the doctors mentioned macular degeneration.

Thirty years later he confused a red traffic light for a green. He gave up driving, but then, week by week, the good left eye deteriorated until the TV screen in the corner was just a blur. But still the doctors said nothing about macular degeneration.

Nowadays things are very different. In the summer of 2006, my eye tests revealed I had both versions: dry in the left eye and wet in the right. The right eye was past saving. However, I still had 80 per cent vision in the left eye. For the time being I could still make out faces, still delight in a landscape, still watch TV and still use the computer.

I was given excellent clear information and advised to do a regular check using a pattern called the Amsler grid. If and when the lines and squares started to distort I should go for an immediate eye test.

A year later, in July 2007, vision in the good left eye began to rapidly deteriorate. This was confirmed by the eye tests. Thanks to a generous friend, I prepared to go for a first injection of lucentis – a new drug – at a private hospital in Newcastle. Then, just three days before the Newcastle appointment, Dr Ana Maria Armbrecht, from the Eye Pavilion, phoned up to offer me a place on a newly-started Lucentis programme. The treatment would be free on the NHS.

For a specialist such as Armbrecht, Lucentis (ranibizumab) is a breakthrough, even more so than Macugen (pegaptanib), another recently introduced drug. She has specialised in macular degeneration since 1997. Yet never before have she and her colleagues in the medical and nursing team been able to achieve so much for patients with macular degeneration.

Yet, south of the Border, people still have to make do with the standard treatment, photodynamic therapy. That has its uses, yet it is not always suitable and often has unsatisfactory outcomes. In England and Wales, the alternative – paying for private treatment with Lucentis – costs about £10,000 for a full two-year course. That's for the drug alone: £890 for a single injection. You have to double that, or more, once you count in private hospital charges and consultants' fees. The only other option is to try and persuade usually reluctant local primary care trusts to fund the treatment. Failing that, you simply go blind.

Why should we have done so much better in Scotland? The simple answer is that we have in the Scottish Medicines Consortium (SMC) an independent institution to issue authoritative guidance to NHS health boards about new drugs such as Macugen and Lucentis. The SMC is separate from its equivalent in England and Wales, the National Institute for Health and Clinical Excellence (Nice). Both Nice and the SMC evaluate newly licensed drugs on the basis of their cost effectiveness. Given the massive overall impact of drugs on NHS budgets, it is vital health boards have authoritative guidance on the relative benefits to patients of both new and existing drugs as measured against the cost implications. The SMC does this relatively quickly and Nice slowly.

The SMC followed on from its earlier positive recommendation on Macugen when it announced its decision to recommend Lucentis. This was in June 2007, six months after it received its Europe-wide license.

Professor David Webb, who chairs the SMC, respects the thorough work done by Nice. However, he points out the SMC produces results that are as robust as – and usually virtually identical to – the more protracted examinations carried out by Nice.

Tom Bemridge, of the MDS, is pleased the long delay will soon be over and relieved Nice has reversed its previous ruling that people would have to go blind in one eye before being treated for macular degeneration in the other. This ruling caused outrage and triggered a campaign by the RNIB and the Macular Disease Society. Thousands of letters poured into Nice.

As Bemridge says, his pleasure that Nice has changed its thinking is tempered with sadness that so many eye patients have lost their sight during the long wait.

Along with a growing number of other patients, I now go to the Eye Pavilion every four weeks, sometimes dropping into the very helpful RNIB Visual Support Centre on the third floor. My left eye is examined and – usually – I receive an injection. It sounds rather alarming since the injections are given by needle directly into the eye. But everything possible is done to minimise the risk of infection and it is all carried out with consummate skill by the surgeons, complemented by exemplary nursing care. What with all the antibiotics, anaesthetics and bright lights, I hardly feel a thing and am fit to go home a couple of hours later.

For the vast majority of people, the injections halt the downhill slide towards blindness and, in about 40 per cent of cases, some of the lost sight is regained. Armbrecht estimates about 400 people in Edinburgh and the Lothians stand to benefit every year.

For me, the treatment has worked brilliantly. I have not regained all my lost sight, but the overall improvement is remarkable, which is why I was able to read a poem at a Burns supper this year – and why I am able to write this article.

WHAT IS THE MACULA?
THE macula is a small spot on the retina, the delicate tissue on the back of your eye that converts light into images and sends them to the brain.

The macula is responsible for what is seen straight in front of the eye, aiding in the eye's ability to see colour and in activities such as reading and writing.

When the delicate cells of the macula become damaged, the resulting condition is known as macular degeneration. When this occurs in later life, it is called age-relation macular degeneration (AMD).

"Dry" AMD is more common and occurs slowly, causing a gradual loss of central vision. "Wet" AMD leads to new blood vessels forming behind the retina, which can lead to rapid sight loss.