Best UK Specialists?

[Guest]

Hello, can I ask if anyone has recommendations in the UK for doctors dealing with eye gland disorders? At the moment (once Sjogren's is discounted) I have nothing from my lacrimal glands, meibomian gland dysfunction, anterior/posterior blepharitis have both been mentioned at different times, facial rosacea and my immune system doesn't seem great at all. I would like both help towards getting the various problems sorted and potentially a report written detailing my condition. My questions are - am I better seeing an opthalmologist or an optometrist? And given that I don't have the finance to travel outside of the UK - does anyone have any recommendations for specialists in either of these fields? All comments are appreciated thanks.

[littlemermaid]

Tfour, Where do you live? And how far do you want to travel?

Dr Foster lists UK consultants http://www.drfosterhealth.co.uk/consultant-guide/. To see a specialist in Private practice for assessment and advice just takes one call to the secretary. We look for anterior segment ophthalmologists listing ocular surface disorders as an interest. Some 'rosacea' patients have Rheumatologists if systemic conditions are suspected. We have not been able to find coordination but the GP and various consultants usually do their best.

Do you already have an NHS cornea Consultant letter? You should get a copy of the clinic letter to GP. Do you have follow-up? what is your access if you need treatment now?

Start with the excellent NHS website http://www.nhs.uk/NHSEngland/AboutNH...opticians.aspx - free eye exams on clinical need. This means finding a high street optometrist you like, preferably with further qualifications or working p/t in hospital service. So if you haven't got one right now, start with a regular 'eyecheck' with an optometrist from a main high street chain which has frequent professional update training, eg Sp.......s or Vi....Ex..... NB they are on rota so book the person rather than the time - you can talk to them before you book if it's quiet, just ask. The optometrist can refer you into the hospital service if needed.

am I better seeing an opthalmologist or an optometrist?

We see everyone according to need. You can draw up your own plan.

Consider getting your name on the IAPT waiting list for support dealing with medical conditions and life changes, GP or self-referral if you think it's useful - you will see on the website there are various levels of access, starting with a library book collection and local groups. This is also a way of maintaining healthy contact and support from your GP.

If you are in NHS England, your CCG will be commissioning 'eye services' - Patient Services (PALS) for the Hospital Trusts help us find out what these are eg a list of 'ophthalmic services' is available from the CCG or Clinical Advisory Committee. Eg in south-east we are contracted to a private provider The Practice plc for assessments, who give mighty good unbiased regional advice in my experience.

Although you and I are not looking at procedures, these days in UK a patient would consider a private doctor's professional insurance (BMA and GMC guidelines). NHS work is covered by NHS, but not necessarily all NHS work with private providers. Patients need to examine professional liability and access to Medical Records in the less regulated private clinics and private practice more closely - eg even in a private hospital (CQC inspected), Outpatients can be regarded as independent and covered by doc's own insurance and cover outside clinic hours is NHS, and even Inpatients are returned to NHS if there are problems (check the small print, ask for clarification on cover 'what do I do if'). Decisions on retaining docs and 'practising privileges' are made by private hospitals and insurance companies, and they will even advertise 'NHS trained' as preferable. Therefore, IMHO, Private team services of NHS hospitals with 24/7 cover and Medical Records look good if NHS access is a problem.

Spectrum Thea are running dry eye courses for optometrists so it might be worth seeking out local participants https://www.spectrum-thea.co.uk/the-...new-dates.aspx - haven't tried this myself yet but maybe someone can post up if they have.

Any thoughts, tfour?

[Guest]

thanks for info

Thanks little mermaid, I need such a lot of education and investigation. I am doing what I can in small amounts.

[Felinelover]

This may well be too late for you... but if you are prepared to go privately, Moorfields have a number of consultants that specialise in dry eye. I have been seeing Mr Jimmy Uddin (he would also be available at Moorfields via NHS route) for some years. I can't say that I like what he says - he's suggested surgery the 'tarrsotherapy' or whatever it's called as my eyes are v.v. sensitive and v.v. dry!! But I guess he knows what he's talking about. Another hospital that was recommended was Western Eye Hospital. I'm sure they have a lot of dry eye specialists. If you're in Surrey/Berkshire - I have heard Mr Thomas Poole recommended.... I wouldn't recommend Matheson Opticians in Alton, Berkshire. FOund them a bunch of sharks that just wanted too sell me drops and sports glasses that didn't fit!!! Good luck! ANd do post if you find anyone good... I wouldn't mind another opinion.

[Guest]

This may well be too late for you... but if you are prepared to go privately, Moorfields have a number of consultants that specialise in dry eye. I have been seeing Mr Jimmy Uddin (he would also be available at Moorfields via NHS route) for some years. I can't say that I like what he says - he's suggested surgery the 'tarrsotherapy' or whatever it's called as my eyes are v.v. sensitive and v.v. dry!! But I guess he knows what he's talking about. Another hospital that was recommended was Western Eye Hospital. I'm sure they have a lot of dry eye specialists. If you're in Surrey/Berkshire - I have heard Mr Thomas Poole recommended.... I wouldn't recommend Matheson Opticians in Alton, Berkshire. FOund them a bunch of sharks that just wanted too sell me drops and sports glasses that didn't fit!!! Good luck! ANd do post if you find anyone good... I wouldn't mind another opinion.

Hi Felinelover, I was seen at Moorfields last year and it seems undoubtedly the best place to go in the UK if you can afford it. I had to stop another job in October as a result of my eye condition so am trying to keep expenses down and can't get to London regularly. For anyone reading who doesn't know, on the Moorfields website there is a carousel of all the doctors with a photo, bio and details of their specialisms and you can choose who you think will be best. There are several dry eye specialists and I think they are all pretty good. Last week saw a corneal specialist privately at the local hospital as the NHS wait list is 12 months where I live and I needed monitoring for the recommended treatment from Moorfields. At the appointment much of the previous advice was contradicted, which has been the case since the start of my eye problems as I have had no continuity of specialist / treatment and they all seem to have different ideas about things. (No one has suggested the treatment you were recommended which doesn't sound nice at all so I should be thankful for that at least!)
Perhaps I should have started a new thread as I have further questions and not sure if it will be seen under the title of this thread, but, can anyone tell me what the difference between lymecycline and doxycycline is? Both in terms of how it affects the eye and the level of bodily symptoms?. And has anybody any feedback on cyclosporine 0.06% and what dosage are you on and how long for? I haven't started taking any of these yet as they have all been mooted then booted for the time being.
My current position seems to be nothing from the lacrimal glands, lower ducts plugged (hasn't helped but then there's nothing to plug) anterior and posterior blepharitis, episodes of meibomitis, facial rosacea affecting mostly the nose which has gone red and has the odd pustule occasionally although my whole face flushes up from time to time. I don't think I have ocular rosacea as now I've stopped working with computers, my eye whites are white again apart from the busted veins at the sides but there seems to be an increasing amount of surplus eye white which sort of bunches up when I look to the side and my eye rims are just getting redder and bumpier which I really don't like for cosmetic reasons as well as everything else. Is there anything I can do to stop it? I have had loads of contradictory advice on the bathing and lid scrub situation, the latest is cotton balls 3 x 20 second applications in the morning dipped in water as hot as I can stand. The current specialist has told me to do this for the next 2 months then will review again. There seems to be a reluctance to prescribe me anything that I may have to take for the rest of my life but at times I feel desperate and am now wishing I'd been pushier with the most recent specialist.

[littlemermaid]

Tfour, it's a shambles isn't it. Maybe try this print-out with GP from Patient.co.uk to get fast-tracked - see 'rosacea keratitis' section http://www.patient.co.uk/doctor/Corn...lems-Acute.htm Maybe phone Eye Clinic secretary for a cancellation. 12m is far too long without assessment.

can anyone tell me what the difference between lymecycline and doxycycline is? Both in terms of how it affects the eye and the level of bodily symptoms?

UK National Institute for Health Care and Excellence website http://www.nice.org.uk/ section on 'Medicines and prescribing' - search eg 'lymecycline' there for a good current summary and side effects.

Just guessing, my impression is doxycycline has a better profile and is a more modern choice. Lymecycline is an older antibiotic, well tried. We started intracranial hypertension with 6wk on Lymecycline at full antimicrobial dose - maybe the same would've happened on doxycycline. I wonder if this would've happened on doxycycline as a subantimicrobial dose. Drug reactions are very individual. Eg we gave full antimicrobial dose of oral erythromycin for 8wk after the Lymecycline but it was OK, if ill-advised, although we are still dealing with metabolic IH. A Consulting Pharmacist might be good on this.

Many people eat yoghurt with lactobacillus and stick to healthy diet to help the gut.

It would be nice to see retro data and trials as to when oral antibiotics have worked for this, and some thoughts as to why. It has been flagged up by UK NIHR Clinical Research Network, if anyone is interested.

US FDA http://www.fda.gov/Drugs/default.htm and US NIH websites like MedlinePlus http://www.nlm.nih.gov/medlineplus/druginformation.html also have best available meds info on use, dose, side effects.

UK NICE website is increasingly good- see the Clinical Guidelines and Clinical Knowledge Summaries for our conditions. It clarifies national treatment standards so we know. Also gives access to the British National Formulary info, which we didn't have before. TG they are putting resources into access to proper medical information for us.

The main NHS website is also increasingly brilliant with useful links http://www.nhs.uk/medicine-guides/pages/default.aspx.

DrFoster organisation has expanded to monitoring services but there isn't quite enough info on specialisms yet to help us know where to go.

Tfour, your nose sounds like my daughter's. It's like an allergy/immune response, isn't it. Rheumatology were thinking this too. The nose is only white when she uses prescription topical antibacterials like erythromycin for flareups. Rosacea websites say find a good maintenance regime with gentle antibug facewash and wax-based moisturiser and it can go away but we haven't quite managed that yet. Her nose is very sensitive to sun too. Gluten and sugar-free diet has helped. If she cheats, there's an immediate reaction.

Last week saw a corneal specialist privately at the local hospital as the NHS wait list is 12 months where I live and I needed monitoring for the recommended treatment from Moorfields. At the appointment much of the previous advice was contradicted, which has been the case since the start of my eye problems as I have had no continuity of specialist / treatment and they all seem to have different ideas about things.

Ain't that the truth. We have 2 eye docs with opposite approaches, both of whom we like Healing is an art. The science only goes a very short way. There are still 'cornea specialists' out there who can't treat to NHS standards though.

Like you, tfour, we need local NHS monitoring which isn't there. It's supposed to happen in local NHS eye clinics, commissioned by CCGs. We've done well with hospital-standard high street Optometrists but not available NHS. Also local 24/7 NHS Eye clinics in big hospitals for flare-ups, although we have been refused twice.

Sometimes we've paid Private locally too for help with flare-ups just because we couldn't get a weekday off work/school to travel to London. Some NHS clinics do weekend appointments now. NHS hospital Trusts also see paying patients, with all the NHS Notes, equipment, labs, team, 24/7 backup. There's a worry that Private can be a haven for dinosaur docs or slack practice so I look for NHS standards.

If anyone's got the energy to help - RNIB, Fight for Sight and RCOphth are working together aggressively under UK Vision2020 http://www.vision2020uk.org.uk/news....n=000100050006 to get more budget for the overloaded NHS eye service http://www.rcophth.ac.uk/page.asp?se...General+Public and http://fightforsight.org.uk/tl_files...Report_WEB.pdf.

Good to see RCOphth and College of Optometrists stepping up to raise national standards too.

This conversation with Jack Kanski, Windsor (Elsevier, 2014) explains some of this (scroll down below the book) http://www.kanskionline.com/authors.cfm. To be more fair, there are some good, current Optometrists in high street chains who can diagnose diseases and make good referrals, but they can't access NHS budget yet.

GPs are supposed to coordinate and advise on all our care

And has anybody any feedback on cyclosporine 0.06% and what dosage are you on and how long for?

Anyone got experience with this Moorfields cyclosporine 0.06%? Our docs weren't sure so we didn't try it. It would be nice to get off steroids though.