By the end of this year I shall have reached my century. No, I am not yet eligible for my ‘telegram’ but I shall have had my hundredth appointment at the hospital’s eye clinic. Its been interesting. Really. None of my appointments has been a straightforward, routine check up – all have contained an element of stress and discomfort. I have no way of calculating the number of hours I have spent there but-never less than three and sometimes up to twelve hours when admitted for day surgery.
These visits have taken place over six years – so fairly regular and frequent. I have always taken the opportunity to talk to nurses, technicians, doctors etc. When I get home, armed with this information I do my own research. This enables me to understand the decisions I am often asked to make and to follow what is going on – to be an informed, not a passive, patient.
Its not possible to read when your eyes are dilated or after certain procedures, so as well as seeking information I also take the opportunity to try to inform less experienced patients, who are asking questions of those around them. Sometimes the nurses will ask me to speak to very nervous patients, to help reassure them.
For a few years now I have been trying to use my experience to help others whenever I see questions on various fora. and by pm. Now that retinal screening has become established and more people are experiencing diagnosis and treatment, there is both more demand for this help and more people in a position to offer it.
I don’t claim any special knowledge -certainly not medical -and am fully aware that practices and opinions differ but it may be useful to some to read of my personal experiences and opinions – always bearing in mind that that is all they are.
I was referred to the eye clinic on my second visit to the GP after diagnosis. Retinal screening was in the process of being rolled out across the country but apparently my GP couldn’t wait. Although I had been diagnosed only four weeks earlier I had to have an annual review and an eye test. He thought he could see something on the macular through his hand lens and managed to strain my eye muscle by forcing me to look to the right for far too long. I then had to wait for several months for the appointment while trying to come to terms with diabetes, medication, testing etc. And I was terrified, I shall never forget this period. No one explained, I knew nothing of retinopathy or what was likely to happen in the eye clinic.
Metformin caused me to suffer stroke-like symptoms yet I was told I must continue with it and I was too ill to argue. All I knew was that diabetes was said to lead to blindness in some cases. When I hear people complaining about the inadequacy of the screening programme -and- there are problems with all screening programmes – I am just pleased that they are at least carried out by qualified opticians.
The one thing I do not understand is the fuss made by some over the use of dilating drops. Why would anyone want to refuse them ? A tiny percentage of patients may be allergic or sensitive but there are always alternatives. The point is that everyone I have spoken to in the hospital – biometrists, doctors, opticians and consultants all consider the retinal photo to be useless if the pupil is not dilated. Why would anyone bother to attend for a test which could be entirely meaningless because the pupil was not dilated ? Minor changes could easily be missed. The main use of the retinal photo is for purposes of comparison. It is carried out only once a year. Really People – get over it. Diabetic retinal checks are not the only occasions these drops are used, after all. I think the NHS should refuse to pay when pupils are not dilated as its just a waste of money. Why take the chance? I hear people saying that their vision is fine so that they are confident they can’t have a problem. Very often there are no signs. I have suffered massive bleeds behind my eyes and been totally unaware of any problem.
Who are you cheating by refusing dilating drops? Only yourself. Some cite problems after the drops have been instilled as their reason for refusing them. There is always the human factor. I always have dilating drops on my hospital visits – sometimes twice or thrice per visit. Some nurses are expert – others not. Some drop the contents of the bottle into your eye and it takes many hours for the effects to wear off, some use exactly the right amount precisely placed and there is no problem at all. My consultant has a little metal dropper and is so gentle and precise I am not even aware it has been done. People ask why there is no measured dose – but anyone who has ever had to self – administer eye drops will understand the difficulties. Then there are the iodine drops, of course – but that’s for another time……….
Next time I shall write about what to expect if you should be referred to an eye clinic, a terrifying thought for many but also something which raises unrealistic expectations.