Advice/opinions wanted - making formal complaint and requesting medical notes

[CharlieGreenEyes]

Hi everyone,

I haven't been on this forum for a while and it would be great to be able to update with positive progress - but that's not the case....

Nearly 2 years after first seeking help from doctors, I still haven't had any proper tests or diagnosis (apart from generic "dry eye", "blepharitis" and "MGD". And I'm still being fobbed off with various different eye drops and ointments.

I'm going to be real financial difficulty if I don't get help soon - it's really affecting my ability to work (even from home, which I'm trying to do). And I'm feeling increasingly socially isolated - and it's horrible watching (not the best choice of word!) your life go by.

I've decided I want to make a subject access request for my medical notes. But I also want to make a formal complaint about the original opthalmologist I saw. And separately write to my consultant.

I'm not sure what to do first - and whether it's a good (or bad) idea to do all 3 things at the same time?

I still haven't actually seen my consultant (I did write here about that before but I haven't been assertive enough - and know that needs to change). And each appointment I've had so far has been a complete waste of time, and so rushed I've not been given a chance to detail my exact situation - symptoms, history, treatments tried so far, etc.

So I thought I'd write a letter - so the consultant would have all the pertinent information in advance - and hopefully then finally perform some basic tests (referred to on this forum), i.e. getting my MGs looked at, tear quality, etc (and another schirmers test because I've only had one - about a year ago, and don't know my results).

Ideally I also want to request the medical notes asap - as they are allowed to take up to 40 days to do this. But I also want to make the formal complaint, and send the letter to my consultant asap - because I want to really push forwards in getting proper treatment and consultations.

I suppose I'd just like other people's advice on what to do. Whether to hold off on the formal complaint until I get my medical records? (but I think I should do this asap because I see this as the only way in getting better help).

Also be interested in other people's experiences. Have any of you formally requested your notes (relating to your eyes)? And/or made formal complaints?

It's daunting anyhow the thought of making a formal complaint - and whilst still under the care the person's colleagues, it's pretty terrifying.....

I was too scared to complain until now because I was worried it would impact on the care I received. But since I'm not really receiving any proper care and things haven't progressed after 2 years and I still haven't had basic tests, I don't feel I have much to lose....

I'm trying to get out of my depressive slump (caused by the eye problems and their consequences - difficulty in working, social isolation, helpless frustration when trying to access proper help - something I know many of you also have experienced).

So I'm trying to be proactive and do anything possible (even if it turns out to be unnecessary) that might help me get better treatment. I recently requested the records from my old optician (I made a subject access request under the data protection act) and it has been very useful (there are some pertinent notes there - which I intend to take with me to my next opthalmology appointment).

[cathy8889]

Hi Charlie, sorry not replied to your post sooner, I hope you're ok. I'm sorry you're still not getting anywhere with getting a proper diagnosis. I can send you the name of the ophthalmologist I saw and also the optician who is currently treating me. Don't be afraid of complaining to the hospital where you are receiving treatment, this is how I felt when my eyes were very bad but I realised that I am the customer and I deserve to be listened to and if I am not receiving proper care something is wrong at their end which needs resolving. I remember you were saying that you were having trouble seeing the consultant to requested. When I wanted to see a certain ophthalmologist I went to my gp and they puta request in via choose and book, when I received my appointment letter which said I would be seeing the consultant or member of team I wrote a letter direct to the hospital explaining how much I had been messed about and how I felt I wasnt getting anywhere (basically poured my heart out) and I got to see her at my appointment along with another ophthalmologist.

Have your ever received a copy of the letter the opthalmologists sent to your gp? Some hospitals send letters to patients as part of best practice but it is not compulsory. If they havent I would request a copy from your gp, I did this and I also request my gp notes back to 2007 when all this began.

I put a formal complaint in to my doctors at the beginning of this year because they failed to refer me and provide me with treatment that could have helped (I learnt this from my notes)

The optician I see at Jane Smellie Opticians (located in Chester, Wrexham and Whitchuch - http://www.smellieopticians.co.uk/sh...es?next=&id=38) called Neema Mojarrad is really excellent and he is so helpful and kind and really listens to me when I am explaining things, he is really knowledgeable on dry eye and the various causes. After seeing 5 different ophthalmologists he was the only one who spotted the demodex. He did blephex treatment and it really helped me.

It is so hard to come through depression when the thing that is making you depressed isnt getting any better, Im so sorry you have not got any further.

I am going to complain to my local hospital Arrowe Park for failing to assign the ophthalmologist who specialises in dry eye to me in February 2014, i've put a Freedom of Information request in to see what procedure the hospital operates and how they decide which patient sees which ophthalmologist or whether its like picking out of a hat as my gp described it. Im going to complain to the ophthalmologist I paid privately to see, he told me I was aqueous tear deficient and actually stated that i did not have posterior blepharitis and only anterior blepharitis which turned out to be the demodex in my lashes :s.

I would wait until you have all your medical records so you can make a really informed complaint.

I hope things get better, just message me if you'd like to know name of ophthalmologist I saw. Neema my optician is really good too though and a dry eye assessment with him costs a lot less than one with ophthalmologist.

Cath xx

[CharlieGreenEyes]

Hi Cathy

Thanks for replying - and it's nice to hear from you.

How are things going with you? Hope getting better - at least at bit?

Just been reading through your reply and it sounds like you've done all the things I'm going to have to do - formal complaints to both the GP and hospital, getting hold of notes, etc.

Sounds like your experiences have been so similar.

Thank you so much for suggesting some people I could see (who you've seen). I live in London so it's not ideal going to see someone around Chester, Wrexham - but I'm beginning to think it's worth travelling if it means seeing someone who knows what they're doing (and doesn't dismiss the issues).

I do get copies of the opthalmologist's letters to my GP (unless they send anything extra to my GP). Not much ever written on the letters because they were so rushed whenever (and they don't specify anything like my TBUT or what type of blepharitis I have or anything else).

The appointment letters I get don't specify that it might be a member of the consultant's team. They just have the consultant's name - but I've never seen him. I don't mind if it's one of his team - if they actually examine me properly (and know enough about MGD, dry eye, etc). So far that hasn't happened!

I finally wrote a letter to the hospital like you did - pouring my heart out. It was probably too long but it's so hard to write clearly when your vision isn't focused and is blurred.

I sent it via PALS. They didn't have an email address on the website so I used their contact form. Haven't heard anything back yet so I'm going to call tomorrow. I'm sure the website said they had to acknowledge complaints in a few days...

I also wanted to complain to my GP surgery but think what you did (getting hold of your notes) would be best before complaining. I want to see exactly what my GP's written because they seem so dismissive and don't seem to understand anything about Dry eye, blepharitis or MGD.

Still, I have a sort of update and sort of good news. I'm so scared that complaining will make them mark me down as a "problem" patient. But I've found out that there were other complaints about the original opthalmologist I saw! I saw him at my GP surgery and he wasn't just dismissive but also very rude. I've found out he no longer visits my surgery - and apparently was rude to the receptionists there. I'm not sure if the other complaints were formal or just informal but at least I know it wasn't just me being fussy or difficult!

I'll update when/if I hear back from the hospital about my complaint - and hopefully my next appointment will actually get me somewhere - a proper examination, tests, and proper diagnosis!

Hope things are going better for you.
xx