Charity fears elderly on Shetland will go blind over 'cruel' policy to ferry patients for sight treatment

The Society are concerned that some will go blind because a number have indicated they are unwilling to make the trip. The patients, who have wet age-related macular degeneration (AMD), need injections into their eyes to slow down the progress of the disease and preserve their sight.

Without injections every four to eight weeks they would rapidly lose all their central vision, which is needed for reading, seeing television and recognising faces.

Because the injections are not available in Lerwick, patients have to travel to Aberdeen once a month on overnight ferries that take 14 hours in each direction. Some have given up the treatment because they cannot face the journeys.

It is estimated more than 100 elderly and in some cases infirm, patients are affected by AMD and require treatment but only around one in three actually go to Aberdeen for treatment.

While NHS Shetland had previously said there were plans to bring treatment onto Shetland, the society say there have been several setbacks and "nothing has moved forward". It had been oped to train a nurse to provide the service in Shetland but that was last year proven not to be technically viable.

Figures obtained by through a Freedom of Information request, showed NHS Shetland could have saved £146,625 in transport costs for AMD treatment alone in one year if local treatment had been on offer. That did not include the costs of people travelling as escorts for patients with poor vision.

Claire Hurst, who is in her 70s and was diagnosed with AMD two years ago, says she has to take on the difficult, journey to the Aberdeen Royal Infirmary every four weeks knowing that if she does not, she would go blind.

She said: “For me there is no question as to whether I would make the journey or not. I know the injections are saving my sight.

“But, I find it very tiring. The journey itself isn’t pleasant and can be very rough. The day you’re going up you’re psyching yourself up for it.”

The Half Light - the Macular Society's video on how  AMD affected one woman (WARNING not for the squeamish) 

She added: “It is two days out of your life every month, that’s four weeks out of my life a year. An on-island service would make such a difference. It would mean I could be at the hospital within 45 minutes, have the injection and go straight home again.

“All month you are waiting for it. It dominates your life. My life is going from injection to injection. Everything is planned around them. There is always a sense of relief when you get off the boat and you’re home.”

She said patients are also offered the option to fly to the hospital. However, flying can mean a 5am start for many as the airport is at the southern tip of the archipelago and they will not be home until 11pm.

Cathy Yelf, chief executive of the Macular Society, said: “This is a very cruel regime for these patients. The burden of ordinary treatment for patients with wet AMD is already huge. Most patients need to return to hospital for injections, sometimes as often as every month, for life. Even with the shortest of journeys, this can have a huge impact on the individual, as well as the lives of their friends and loved ones.

“We are extremely concerned that patients in Shetland, who are predominately elderly, are facing very long and arduous journeys for vital treatment. Tragically, some are now receiving no treatment at all. It is unacceptable that patients are facing irreversible sight loss because they do not have the same access to treatment that is routine in the UK and other Scottish islands.”

John Furze, regional manager for the Macular Society, which covers the Shetland island, added: “We know this can be done and it would undoubtedly make a huge difference to peoples’ lives. We urge NHS Shetland and NHS Grampian to make this happen as quickly as possible.”

AMD is the biggest cause of sight loss in the UK affecting 600,000 people and it is estimated every day, around 300 people are diagnosed with the disease.

It can affect people of any age – even children – but not enough is known about why, and there is still no cure.

There are two main forms of AMD – a ‘dry’ type and the ‘wet’ one. Wet AMD has nothing to do with watery eyes but is so-called because abnormal blood vessels grow under the centre of the retina (the nerve tissue that lines the back of the eye).

These blood vessels leak fluid and bleed easily, and this can cause severe visual loss because it is such a sensitive area.

Until about 10 years ago, there was no effective treatment for the wet form of AMD.

But now it can be treated with regular injections of drugs such as Eylea or Lucentis into the eye. They block the growth of new blood vessels and reduce the leakage of fluid from existing vessels.

This improves sight substantially in about a third of patients and prevents further worsening of vision in about 95% of cases. However, the effects of the drugs last only one to two months, so people need frequent injections over long periods of time.

BHS Shetland’s director of nursing and acute services, Kathleen Carolan said: “We recognise that people who are frail and elderly are having to make frequent journeys to Aberdeen for AMD treatment and we want to be able to offer a local service as soon as it possible to do that safely and consistently.

"We have been working closely with NHS Grampian over the last 12 months (who provide our ophthalmology service) to look at ways in which more specialist nurses can be trained (in Aberdeen) to provide the injection therapy in Shetland (so the nurse will travel to Shetland instead of patients travelling to Aberdeen).

"This treatment is relatively new and it is only in recent years that it has been possible to include nurses in the delivery of the treatment itself so, it will take time for us to be able to provide the treatment safely in Shetland.

"We are expecting to be able to offer more of the AMD treatment and surveillance in Shetland in 2019, when the training and some computer systems sharing work is complete.

"We realise for AMD, as for many treatments, that making the long and sometimes difficult journey to Aberdeen adds additional stress for patients and families.

"Patients have a choice in travelling to Aberdeen by boat or plane and the majority of people opt to fly; but we know that this still means a full, tiring day away from home, even if it doesn’t involve a 14 hour ferry journey.

"Redesigning the AMD service and others are a priority for NHS Shetland and we will continue to work with other NHS partners and the Macular Society to ensure that we deliver the safest model of care to patients in Shetland.”