"Recurrent Uveitis"

About: Raigmore Hospital / Ophthalmology

(as a parent/guardian),

My teenage son has had uveitis on at least 5 occasions now. The first time he had to wait three days for a doctor's appointment and then 3 more days for a clinic appointment despite the fact of a family history of it (me) and the very real danger of permanent loss of vision.

The second time he was given steroids again and no follow up appointment. Being a teenager he did not want to make a fuss or anything but I knew he should not have been just left without a follow up and left on potentially damaging steroids indefinitely! When he eventually got to the GP and back to Raigmore they actually laughed "oh dear - you shouldn't have been on these all this time! " Then the next time he had uveitus - as per the other times, he had to first try and obtain a GP appointment and referral despite time delays causing more damage - Raigmore told him he did not have uveitus.

I was desperate by this time and went to the GP with him - who practically told me to stop being silly and that I should have more confidence in Raigmore's eye clinic! We very luckily could afford to pay to go to Aberdeen and see a top specialist there - who promptly diagnosed uveitus in both eyes and carried out futher tests to find out the underlying cause.

The cause has still not been found and my son has had further bouts of uveitus - treated poorly by Raigmore. I suggest someone so young, with a disease this serious should be followed up, the underlying cause should be found, they should also be able to immediately access the clinic when a flare up occurs and not after days/weeks of GP referral, they should also surely see someone more experienced than a non-trainee or junior and perhaps even a specialist in their disease. Raigmore to my mind at the moment fills me with fear for my son's eye sight!

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Responses

Response from Maimie Thompson, Head of Public Relations and Engagement, Chief Executive's Office, NHS Highland

picture of Maimie Thompson

Dear Dougal12

Your story is upsetting and worrying on a number of levels. But rest assured NHS Highland CEO Elaine Mead will have read this as will her senior managers in Raigmore - so in making your response you have brought this to our immediate attention. Please accept our apologies.

This afternoon I have spoken to Andrew Ward. He is the Divisional Managers with responsibility for Ophthalmology and he wants to understand what has gone wrong. If it would help you he will look into your sons details with your permission, or consent from your son.

The hallmark of the NHS is free at the point of need. It hurts us that you have had to pay to go elsewhere. I would like to think we can win back your confidence by doing what you have every right to respect - excellent care for your son. You can email me maimie.thompson@nhs.net or call me 01463 70722

Thanks

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Update posted by dougal12 (a parent/guardian)

Dear Maimie

Firstly, thank you very much for quick response to my son's story. Having discussed this with him he is unwilling for me to give you his details as he is worried it would affect his care in the future. I have tried to reassure him that this is not the case but he is adamant. He also is keen that the failings highlighted are rectified for all patients and not just for him.

The main causes for concern are that he (and I assume everyone else) has to try and get a GP appointment for a referral to the eye clinic each time it flares - surely there should be a contact number given out (which will not go out of date if that staff member should leave) to enable access to the clinic immediately, given that the earliest treatment and diagnosis possible is key.

The GP should not be told to start treatment with steroid drops without the patient being seen - steroid drops have their own set of serious side effects and surely should not be given out without a firm diagnosis.

Surely people with a sight threatening ongoing disease like this should be followed up regularly whether they have active disease or not and is it not perhaps a good idea for an underlying cause to be looked into and at least a referral to a rheumatologist made?

I do hope that these changes can be implemented and that my son and others like him can have a better of chance of retaining their sight.

Updates, changes and questions related to this story