Now You See It – Now You Don’t


Proliferative diabetic retinopathy

Proliferative diabetic retinopathy (Photo credit: Community Eye Health)

Before I started to connect with other people who had Type 1 diabetes on Twitter I had no idea that so many people had the same feeling about diabetes retinal screening that I did. It has been a real revelation and to some extent has made me feel marginally better; before that I felt such an idiot – after all its only having a photograph taken of the back of your eyes and other than the stinging drops and nuisance of dilated pupils it’s not painful at all.

They don’t really understand why diabetes causes retinopathy but Diabetic Retinopathy is the most common cause of new blindness in the UK in those people who are of working age. In many sites it states that once someone has had diabetes for more than 20 years nearly all people with diabetes will have some retinopathy. I have had type 1 diabetes for 33 years.

Just before I go on in those 33 years I have never been admitted to hospital (with the exception of having my son) and never had a day off ill due to my diabetes. My case notes I would say are remarkably thin – here is a picture of them. Case notesI have worked with hospital notes for many years – take my word for it for 20 years of care at my local hospital these are very thin! I conclude that I have remained reasonably well controlled for a significant period of time (I’m touching wood as I type).

Back in the 1990s, before the national retinal screening programme existed I had great care. I used to see an Ophthalmic Registrar every year in the diabetes centre. I had continuity, as I saw him quite a few times, and he was great. Apparently I have some interesting blue crystals in the lens of my eye that he used to show medical students if they were with him. It used to make me smile.

In later years the retinal screening service was created locally and I started have photographs taken of the back of my eyes. I wasn’t sure at first but I became used to the convenience of a local appointment. The technicians were pleasant, if sometimes a bit patronising – I think because I am now clearly middle aged they assume I am type 2 and have never had eye screening done before; of course I have had my eyes examined more times that I care to remember. In conclusion the local retinal screening service is a great service.

Eye screening has always made me vaguely anxious. Part of the problem with retinopathy is it can be a little bit unpredictable – improved control, as much as poor control, can cause deterioration. That’s what happened to me. It could be a co-incidence, and due to the length of time I have had the condition, but when I got my beloved insulin pump they started to see deterioration.

Eyes are very precious. They mean I can see to draw up my insulin and count the carbohydrate on packs of food. I can see to set my pump. I can read for work and pleasure. I can drive. All of these things mean freedom, independence and an ability to support my family. The thought of losing these is so scary I can barely write this down.

Retinal screening isn’t a great experience either. It takes me out for around 4 hours when I just can’t focus to drive or do very much at all. When I went to the retinal screening service, as it was local, I could get there on the train and bothered no one. I could make up the work time I missed and all was well. This is a picture of my eye yesterday after dilation – it’s impossible to focus and bright light is painful as the pupil is so dilated the eye can’t close it down to protect the back of the eye.Anne eye

This went on until around 18 months ago when the retinal screening process referred me to the hospital as there was deterioration in my eyes and I now fell into the category of having a referable diabetic retinopathy. As an aside I can’t get to the hospital on public transport easily and I’m not allowed to drive so usually my other half has to take a day off to take me to the hospital.

I duly waited for an appointment and eventually an appointment arrived. It wasn’t a great experience. I saw a registrar who was patronising and lectured me about how I must have good control; the implication was I hadn’t been good and I must improve. That day I was feeling a bit bolshie so I told him to look in my notes at my HbA1Cs before he made a judgement about my level of control. I think on that occasion the most recent reading had been 6.8 – good by most standards. His advice – we need to see you in 3 months. He said my eyes were the same as the last photograph but there was still the same problem.

I had a persistent sense of dread. I know that any illness or issue can cause a speedy deterioration and that the patient can’t always detect it. It’s a bit like a sword hanging over your head. But I’m a pragmatist and I carry on. There is little point in feeling sorry for yourself – it serves no one well.

I waited ….. and waited. Eventually an appointment arrived for 6 months later. I had been told to expect one in 3 months but I know how pressured services are so I just tried to stay well and went for the next appointment. The doctor, this time the consultant, was lovely – ‘No change – please come back in 3 months’.

I knew there were no appointments in 3 months – I asked. They don’t allow you to book at the time of your visit either. So you go home and wait for a letter. I waited and a letter eventually arrived. This time it was 8 months later before I could be seen.

The pressure is incredible to attend the appointment. There is no way I could conceive of cancelling and trying to re-arrange – so if I was doing a really important job at home or work I’m not sure what would happen. I feel sure I couldn’t rearrange at least without further delaying my appointment.

Yesterday I went for this latest appointment. The good news is – no change. Unfortunately he advised me again that I need to go back in 3 months. I told him I knew there were no appointments and how I knew. He advised me that his recommendation was that I should be seen in 3 months. I said to him that it was unfair on patients to recommend 3 months knowing that there were no appointments.

He is lovely but advised me to write to the hospital. I was a complaints manager for 9 years and I do not believe this is the right approach. He told me that since many more patients with type 2 diabetes were being seen in the retinal screening service the number of referrals to the hospital had doubled and that they could no longer cope without more doctors.

This is a really good example of how we need to look at and possibly change whole systems. If we can’t afford to be seen every 3 months we need to look at new ways to deliver these services to make sure we protect as far as we can the vision of patients with diabetes. At the moment the system is creaking and failing me, as a patient. I don’t know if this is the pattern everywhere or just in my locality. If we screen patients and find disease then we have to do something. I would love to work with them to work out what is possible. I can’t believe that my screening could not be done by using digital photographs and continuing to monitor them more closely but without me taking a specialist appointment as well as giving me responsibility to ask to see someone if I have a period of poor control or have symptoms; it just seems illogical as it works or doesn’t work now. I’m getting potentially worse care when I may have a greater need. It’s all upside down – now you see great care – now you don’t.

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3 thoughts on “Now You See It – Now You Don’t

  1. Annie,

    I hate having retinal screening – it maybe because for some reason I have strange phobias about eyes (can’t bear the concept of contact lenses etc, I was allocated six weeks of opthalmic nursing when I did my RGN and it was 6 weeks of torture!) . Like you the drops are painful and while not that vision affecting as such, they do make the light unbearable.I end up wearing sunglasses inside, it is that bad. Luckily (12.5 yrs after diagnosis) I still don’t have any problems but it is my top fear, I even took a friend along with me last time because I was so worried by the exam! My optician takes retinal photographs without the drops – so I have them done twice a year now!

    I do have retinal abnormalities – I apparently have CHRPE (Congenital Hypertrophy of Red Epithelium) seen once by a consultant and discharged – one of them ‘its abnormal but okay’ syndromes.

    What I note though and which is what depresses me about diabetes care in general are the value laden statements the dr used to describe your HBA1C control….

  2. Hi Anne- i do keep thinking that where the client is able why on earth don’t we put them in charge of their care so we serve them, not so they are at our beck and call. Brilliant blog from a patient’s perspective reinforcing what i’m thinking! I (and i know i will be judged for this) use homepathy. I have used it for over 14 years. One of the key things is provides is direct access to supervision/advice at times i need it. Sometimes i have contact every 15 minutes through acute stages of illness and sometimes it is years without contact. The key point being most of the time i can manage my family’s health but when i’m not managing i need timely access and response. The NHS must change.

  3. I have background maculopathy, been seeing the same consultant for years but she retired and I saw the new one for the first time 6 months ago. I have never come across someone so rude and ignorant in any of my diabetes related care.

    It was obvious to me he hadn’t read my notes and was looking on me as being poorly controlled and as someone in their 30’s with T1 I must have been poorly controlled. I know from previous chats with the retired consultant Miss Morrison that my changes were background and she had been a bit angry with the camera team for referring me to her lists, but as I had been referred she would keep me on her lists just to keep a check that nothing changes.

    I have a new appointment in March, seeing the new guy again, he has one more try to impress or i’ll be asking for a move.

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