Pretty down... Can anyone help?

[cathy8889]

Hi Claire, it's great that your family are so supportive, your little sis sounds fab. Most of my family and friends get it but others don't really. You're so right about finding a gp who cares, my doctors is full of locums at the moment and trying to get an appointment with a senior doctor is awful. I'm sorry you have been messed around by professionals too, I feel so let down too,. I'm really keen to try doxycycline, did your eyes get redder when you used it? Some have said that it made theirs more red, is it the oral or topical that you use?

I completely understand everything you are saying, I felt/still feel pretty worthless some days and see no point in trying to make my self look nice or but a new outfit. I don't get excited about going our for the evening anymore because I'm so anxious about trying to put makeup on.

I'm so sorry you had to leave your job, the job I left wasn't my ideal career but if would have given me some good experience and opened up new windows, it's terribly frustrating.

Ii am really working on comparing my eyes to others, I do the same though and constantly think why can't my eyes just work and be clear. Then I feel bad because I should be grateful that I have my sight.

I had some counselling too but I too found it didn't help. I'm trying to focus on other aspects of myself but it's so difficult. It s nice to know you're not alone but at same time you don't want anyone else to be going through it too!

I hope I can find a gp who really cares, I'm considering moving if my current gp can't get the funding to see the specialist I want.

I really hope your eyes improve with time.

Cath x

catchy I am so sorry to hear what you have/are going through. I wouldn't wish this on anyone. It was crazy how it happened, my eyes have always been fine and really white, next day bam and they were inflamed. I was prescribed fusidic drops three times (first they worked beautifully but it kept coming back) then I was told I had allergies, next visit I was told I needed glasses (which I didn't) by the time they referred me - which I begged them to do- it was four agonising months of painful red eyes. The eye specialist gave me more steroid drops, told me it wasn't blepharitis as I asked, month later I found out it was on a return visit because the nurse read my file out loud. I felt so let down.

I have worked hard all my life and went to god knows how many interviews before I got a dream job. My eyes were so bad that by this point I wouldn't go out, couldn't look at people, I couldn't look at myself and wore nothing but old track suits. Even brushing my hair felt pointless. I managed one day at the new job through desperate blinking and trying not to let people see the state of my eyes. You can't help but look at others and think how come? Why are your eyes perfect? Why can't mine heal???

I lasted one day and left. My dream job gone. I was beyond broken. My appearance and then my career... I got counselling but one doctor said it's not cancer (really???) and if you had dry eyes you wouldn't be able to cry. I walked out on him.

I have a feeling my antidepressants might not be helping, it is making my mouth very dry.

On the positive side my family are very supportive, my little sister has done post it notes next to all the mirrors saying things like 'it will get better!' My gp is amazing, she said they will get there but it's a long road. She promises me I will get them restored. I see her most weeks and hang onto that hope.

Also since I have been noticing other peoples eyes I have noticed some people to have a lot of veins naturally. I never noticed that before so maybe it isn't as obvious to others.

I share your pain cathy. Get a gp that really cares, or an eye specialist that will be thorough with you, I demanded I saw a consultant after the last one.

[littlemermaid]

I was just wondering how you went about finding a good corneal specialist if you don't mind me asking.

Cathy, thanks, but I was so relieved and grateful to find this forum and people tackling similar problems. Rebecca's Dry Eye Digest has been great too http://www.dryeyezone.com/. Here's some ideas:

The best person to ask who is good for our particular problem is another specialist. I emailed Head of Cornea at an eye hospital with eye surface photographs, and Head of our local private provider ophthalmology service, and they both suggested specialists for the problem. Really kind.

What a good job ClaireW has done insisting on a cornea specialist to work with and finding a supportive GP

High street Optometrists can do urgent NHS Eye Clinic referrals and may know who's good locally. Or they can refer to the regional Cornea specialist clinic and the Registrar or Admin allocates the case if it's not named referral.

Regional Eye hospital A&E (9am when it's quiet and they've just had coffee) can refer to Cornea specialist clinic. Minor Injury Units have ophthalmoscopes and can be pretty good on doc reputations and can refer.

GP, and Out of hours GP, attempted to treat what they couldn't see or understand and there was damage. I thought they would refer to the right Ophthalmologist, but they thought they had to have a go. So that can be a problem. Our local cornea specialist misdiagnosed and discharged for 8m, but I know that even if we had seen someone else there it would not have been as good as the tertiary specialist clinics.

NHS111 is supposed to advise where to go but ours always says 'A&E Eye Clinic', but then we can say they sent us. Similarly, a Pharmacist can triage but can't refer, but they are good for advice.

General enquiries to private hospitals have been no use for me because they haven't known anything about the docs and are Sales.

Patient or advocacy group, as you found here. Eye charities, local and national support networks, are very good on who does what and have professional advocates on the phones now. Often senior specialist docs are on the charity Boards and Trusts and they work well together.

Many hospital Ophthalmology units have a charity-funded Eye Clinic Liaison Officer who we can just phone up for help.

PALS (hospital Patient Liaison Service) are very accessible and good on contacting the department direct (also they report statistics on calls direct to the hospital Trust, which improves the service).

In Eye Hospitals and Eye Clinics in hospitals, clinical and non-clinical support staff will drop a subtle hint who they rate/don't rate. Absent Consultant-itis and not practising to NHS standards are difficult disorders picked up better in regional teaching hospitals. There's also more professional support for suffering docs, and teamwork.

Hospital websites list staff and research. We look for a cornea consultant interested in eye surface disorders + team. As ophthalmic surgeons, they should all be treating the eye surface, MGD, bleph, dry eye pre- and post-surgery, and tracking results, but this seems to be news to some.

PubMed lists all research like a Who's Who. But what if they are really good clinicians but not so concerned about publishing. Often they are attracted to a Centre of Excellence, like a good teaching hospital, where they can learn and practice more. Lists of conference speakers are useful (eg Healio website, Eucornea, RCOphth annual congress) for finding research centres. Good to be with a team that has a research project (NHS website is a great portal - eg search 'eye research' - or Google 'NHS eye research').

Private practice is difficult. Are they so good that they don't need the support of the NHS? Or are there practice management or competence problems in the NHS that have driven them to private practice? I look for someone who is strong in the NHS but does a little private work to 'practice the way they want to when they chose to study medicine'. Some say they can only innovate in private practice. But why is it not attracting research or health service funding or collaboration. There isn't enough funding especially for equipment. But there is much more risk for the patient outside the NHS.

TJ is most bizarre on Twitter and in print but we've never seen him.

In NHS Choose & Book we can get referral to whoever treats the condition, especially when we are clearly not being treated to national standards locally. Cathy, you do right to try different GPs until it works - we've had very different responses from each partner/locum in our practice on referral and supplying meds so the budget stuff must be rubbish and it's about knowledge. If the Consultant writes to the GP that they will accept a referral, they do it.

It is still possible to get an appointment with a great team, and not be assessed and given a clear Care Plan by a managing specialist, which we should have. Typing up a good, clear and complete treatment history helps the doc with diagnosis. And not leaving until questions are answered.

We go back to them for eg drug side effects, treatment seems wrong, or we get worse. The prescribing doc is responsible for meds, and the Consultant manages their medical practice, despite any battles with 'admin'. Tell someone kind and they can make things happen for you. Also PALS is there to help. Also the admin. Good secretarial and clinic support make a huge difference to doctors' reputation and practice so ask for direct numbers and email (they also still use fax).

My BMA friend tells me there is a Register of Specialists but not for patients. RCOphth don't do anything for patients either.

If there are issues or you leave the Clinic with doubts, is the service professional? Review of Optometry articles have been an eye-opener on how differing professionals view chronic eye surface disorder patients compared to fixable surgical patients, how little regulation there is, and how wide the gaps in skill, qualifications and experience are.

It is important to keep a Symptoms and Treatment Diary to demonstrate the effect of pain and photophobia and lack of treatment on quality of life to get a serious referral.

Mostly I think of Rebecca's thoughts in Coping 101 http://dryeyezone.com/encyclopedia/coping101part3.html. We need someone we can work with. And we must be a courteous patient.

If anyone's got time, this is a fascinating doc's eye view on a difficult case to support https://www.youtube.com/watch?v=lhWwtzEH9A8

Let's hope people post up more about how to find the right specialists and save the health service and us more wasted appointment money. Great question, Cathy.

[cathy8889]

Dear little mermaid

Thank you so much for your detailed and thoughtful response, I really appreciate it and have took it all in. I think I'm
going to start printing these discussions off so I don't forget where I read them!

I am definitely going to follow your advice and type up a clear history of my eye problems, I'm fed up of trying to tell ophalmologists and then they don't listen or are more interested in just getting on with the exam without a full history! The last one I saw basically told be to shush while he was examining my eye and then I forgot to ask what I wanted to ask!

I think it's a great idea about people posting up their experiences and how to find the right specialists, maybe we could start a thread for each country, Sorry if this has already been done.

I'd like to share my experience so that people don't end up wasting their time, money and also risk their condition becoming worse because of ophalmologists who just don't give two hoots!

Thank you again for your help, it will really help me and gives me the determination to find someone who can really help.

Cath

[littlemermaid]

Cath, you might be able to 'bookmark' pages on your software to save printer ink (I can click a star up top and arrange 'bookmarks' into groups, very cool). I used to do a crazy amount of printing journal articles too because I thought I would lose them but then I found 'Mendeley' which recognises the article title and authors etc and bookmarks the links.

Sometimes they put our typed-up history in the Medical Record so good to keep it in summary notes - eg date, symptoms, doc, diagnosis, prescription. But not hold back on describing pain, photophobia and effect on life.

Hospital clinics like a copy of current GP prescription, to look for conflicting meds etc. Of course we can have a copy of all our Consultant letters, scans and test results. We always take the complete file, with scans on the iPad, but keep it hidden unless useful. Sometimes they use it to copy letters they haven't got etc. Bring on shared Electronic Medical Records.

We did have a '1 minute 37 seconds' specialist as Rebecca describes in 'Coping 101', so we learned to get super-organised in advance and hand over a short list of questions very fast. It's good to have a friend with you to help ask questions you've talked about beforehand, so the doc doesn't set the agenda and zoom off. Sometimes a good person to talk over treatment worries is the Registrar. An Ophthalmologist who is applying for Consultant jobs is good to find because they are super keen up-to-date and technical. There's also Ophthamology Nurses and Optometrists who will grab a doc for you if needed and can be tremendous to talk to about eyedrops and eyelid hygiene tips (many have environmental dry eye).

From the question list, I flushed out that our first Consultant was floundering and had misdiagnosed (he kept no notes, wrote no letters). Without it, I wouldn't have known, because some weaker docs maintain a supercilious, martyred, angry air to discourage any dialogue, a sign of problems.

My d has a Headache app now on her phone for raised intracranial pressure (meds side effect), and she was surprised to see pain, incapacity, meds, in data form because she hadn't realised headaches and vision wobbling were so frequent and not reported that well to Neuro, so she was discharged. So maybe someone will help us with an Eye app.

Many thanks for the link to Michael Lange's blog, very useful. And thanks for asking about us. It's done me good to talk about it.

Good luck with your doc-shopping. Maybe one day soon we'll be able to ask anyone who works in the health service and they will point us to the right people. IME trying to help someone to look after their eyes is difficult http://more-distractible.org/musings...hronic-disease

Cath and Claire, we're all with you here x

[khmedia]

Hi Claire,

You mentioned you got glasses. Just a quick reply. Make sure they aren't regular sunglasses but are moisture glasses which you can get from

http://www.dryeyeshop.com/storefront.aspx

I got mine from

http://www.dryeyeglasses.co.uk/ (I'm in the UK and this website suited in terms of fast delivery).

Just wanted to make this point as the glasses need to be these special moisture glasses not regular sunglasses - I was unsure from you comments.

Kevin