Uk specialist and lots of other questions

[MarianneW]

Hi Everyone

I know this question has been asked before but I'm hoping someone might have had some luck in finding a good dry eye expert
In the Uk. I live in Birmingham but will travel anywhere for help. I have been told I have mgd and using blephasteam googles( but worry these don't work properly) , doxy and omega 3. I have been told I just need to be patient for things to work. But how long is realistic with a constantly irritated eye that is not help with drops? Does anyone know of anyone I can call when I'm desperate as I keep having day long anxiety attacks and silly thoughts which is very frightening.

[Jovver]

Hi
I'm live in Brimingham as well and I'm in the same boat as you unfortunately (although it 's "self inflicted" in my case as I had Lasek a few months ago). I asked the same question and the following consultants were recommended in Birmingham.

My hubbie has seen several eye docs in the area since his diagnosis for severe DEZ last year. It's been a mixed bag and continues to be a challenge due to lack of resources and NHS funding. Having been prescribed autologous serum he has been turned down for NHS funding. Privately they want £1,500 every 3 months!!! So, we've gone to the Vissum Inst in Spain to get E-PRP serum thanks to the advice from Sazy and the kind people on this forum. Meanwhile, we're appealing for the NHS funding.

2 empathetic docs I'd recommend are:

Mr Shabbir Mohamed - works in the University Hospitals Birmingham NHS Foundation Trust and in private practice.
Mr Harpreet Ahluwalia - University Hospitals in Coventry & Warwickshire and private practice.

We're obviously very interested in hearing about anything to help with severe cases and haven't had any contact with Aston uni, which is very close to us.

I haven't used them yet as I decided to go down the Moorfields route but I'm not sure that the particular consultant I saw there was particularly helpful. I'll try to get a referral to one of these guys next.

[MarianneW]

Hi

Thank you so much for taking the time to reply to me. I think you are struggling as much as me it is all so hard. I went to the doctor for a referral letter and he ended up sending me
to Mr Amit Patel. He was very knowledgeable but too honest and said it is very difficult to treat not what I know but didn't want to hear. Anyway he has given me a steroid to try.

It is all so hard.

[lizlou29]

Hi MarianneW

I'm sure most of us feel the same way. it's a very frustrating condition. I'm going through a very tough time myself but have found a lot of support on here.

Are you able to go private? Is the steroid drop helping at all? How long have you been taking the doxy and omega 3? They say it can take 3+ months to start helping.

Littlemermaid may possibly be able to give advice on who to see near to you. I've had a private appointment at Moorfields but have had better treatment on the NHS I think.

Really hope you find someone to guide you through this journey.

[littlemermaid]

Marianne ~ We normally head for the Cornea team at the largest regional teaching hospital or eye hospital because they treated to current NHS clinical standards, at least, unlike the locals we saw http://www.nhs.uk/conditions/blephar...roduction.aspx and http://cks.nice.org.uk/dry-eye-syndrome. Access was difficult for us because GP refused to refer because we had been seen local, so Ophth Consultant advised us to present at A&E Eye Clinic for access. Lizlou has done better with her GP, I think. We paid Private in the end for diagnosis and access, but other Ophth suggested that person by email http://www.drfosterhealth.co.uk/consultant-guide/. The key to feeling better about this has indeed been regular follow-up appointments and access to emergency care, if needed.

It was very useful to have eye surface and eyelid margin photographs and some monitoring from local Optometrist with an interest in dry eye if you can avoid buying their endless old-stock eyedrops. Also very useful to see your own eyelash follicles to find out whether the warm compress and cleaning regime is working. An Optometrist can do a better informed and professional hospital referral, usually more successfully, I think, but they need to be 'current'. Only the big chains check on this. Optoms who work both in hospital service and high street can be great.

Agree with Lizlou, I wouldn't have touched private sector with a bargepole because it's 'caveat emptor' and regulated only by insurance companies and private hospital chains and hubris (and in theory, CQC and Monitor), but 'needs must' sometimes if we can't access NHS specialists by sensible referral, even though 'NHS Choose and Book' is still supposed to be operational.

Maybe send a Private Message to Nadz (her quote above). We are South-East. I would be looking at eg Manchester and Birmingham Eye Hospitals and teaching hospital websites, working out who's who in anterior segment with an interest in 'ocular surface disorders'. As Lizlou says, Moorfields isn't necessarily best when we are looking for ongoing care and support. NHS is best. Plus it's 24/7 if needed

Marianne ~ you're very welcome to PM me and chat any time about how you feel, although I'm just somebody's mum, whatever helps. Also, you need a good relationship with a GP about the anxiety and access to Talking Therapies that way or self-referral. I wouldn't hesitate to make use of the Healthy Minds network to find a local mutual support group. It makes a huge difference to share this http://www.bsmhft.nhs.uk/our-service...healthy-minds/

[MarianneW]

Hi

I have been on Doxy for nearly a month now and omega 3 for nearly 3 months. Unfortunately I seem to be going backwards as my mental health is not very good at the
moment so am on antidepressants and tranquilizers etc which I thinks counter acts the positives of the other thinks I have been doing. I have only just started to take
the steroid and am on it for 2 months so will have to wait and see. It is certainly a real battle each day to keep going.

[MarianneW]

Hi

Thank you so much for taking the time to reply. I really need a friend at the moment to help me get through this as I've got my self into a right mess over this. The Doctor
has referred me to healthy minds and am waiting for an appointment. How do I PM you?

[littlemermaid]

Hello Marianne ~ good to hear that you're on the road to finding a local Support Group with Healthy Minds. Sometimes getting involved with local eye charities or volunteering can be helpful, one way or another. We can PM by clicking on the person's blue name and selecting Private Message. Good to hear that you are on the normal treatments and in good hands. Have you got a nice Optometrist too for advice if you're worried?

We are doing well with Blephasteam but it's just a way of keeping the glands moving, plus we have to keep the eyelid margins clean so there's no crusting around the eyelash bases. A warm shower or steamed flannel is good too. Have you had blocked glands or styes?

[nadz]

Hi Marianne,
I'm so sorry to read about the challenges you're facing. Whilst my hubbie is nowhere near out of the woods with his condition I can at least pass on some of our experiences with doctors. We've seen quite a number now, both privately & in the NHS and most just give out standard basic advice. Spending money does not guarantee a better experience at all, but it can get you an NHS referral. What we've found is do your research on a doctor and email in advance to check they have the relevant experience.

The nearest regional eye hospital to you? It's the Birmingham & Midland Eye Centre at City hospital - see link below. There is also an eye A&E in case of emergency too.

http://www.nhs.uk/Services/clinics/O...w.aspx?id=1812


My advice is to browse through the consultant directory and ask your GP to refer you to one of the relevant docs if Mr Amit Patel doesn't work out - he does seem to have good credentials though.


http://www.uhb.nhs.uk/consultant-dir...=Ophthalmology
"Consultant directory
With so many consultants, all with special interests, we appreciate it can be difficult for GPs to make the right referral choice, and it can be confusing for patients.
This consultant directory is offered as an easy reference guide to the specific clinical services and interests of all the consultants working at or for University Hospitals Birmingham NHS Foundation Trust."

For MGD have you tried Blephaclean sachets? These seem to work quite well for my hubbie who struggles to use hot compresses due to the pinguecula growths on his eyes.

http://www.spectrum-thea.co.uk/apps/...nt.aspx?fid=11