Referal on NHS for Jenny, Anne & Matt
Hi,
I've been sent here by Mike, from the Iritis site, in the hope you can help me through the NHS system.
Just to give you a brief history, I have been treated CONTINUOUSLY for the last 9yrs for Uveitis. Started with Iritis in both eyes for a couple of years,had the usual drops, then imflamation progressed to the back of my right eye causing pressure on the optic nerve, leaking bloodvessels, cysts/snowballs, macular edema and a high risk of retinal tear. I was treated with oral steriods starting at a dose of 80mg per day (which made me extremely ill, off work for 3mths)but did save my eye. Stayed on oral steriods for 3yrs having a couple of flares when they were tapered too fast. The steriod drops were started again as soon as the tablets stopped to keep the Iritis in both eyes at bay. In the last 12mths I've had to up the drops on a few occasions as the Iritis has flared, what worries me is that the doctors at the eye unit have said the intermediate and posterior imflamation is smoldering in my right eye, but not enough to treat! Even though over the years it's causing scarring and my sight is gradually worsening. I've also had back,hip and chest pains for the last couple of years. I have had to ask for an X-ray,the results of which have mysteriously dissappeared and am still awaiting the results of the HLA B27 blood test.
I have asked about other non steriod treatments and a referal to Mr Andrew Dick at Bristol (only 11/2hrs drive away) but they don't want to know, telling me my condition doesn't warrant a referal! It doesn't help matters when I see a different doctor at every appointment and have only seen the main consultant a handful of times when I was in danger of loosing my sight!
Help!
How do I get a referral?
If I do get to see Andrew Dick is my treatment transferred to Bristol or will I still be treated locally?
How much would an initial private consultation be?
Mandy,
You could ask your GP to make a referal.
When you last saw the consultant at your eye clinic, did you ask for referral? The junior doctors can't initiate them.
My private consultation with Professor Murray in Birmingham was £50.
Someone else who used this board a few months ago had a similar history to yours and was told there was no treatment other than steroid. He asked for referal to Andrew Dick and got it.
Make a fuss at the eye clinic and tell the nurse that you'd like to see the consultant and you don't mind waiting because you want a referal. I don't think you've received even standard NHS care if you haven't been sent for blood tests and x-rays .....
Good luck
Maxine
Re: Referal on NHS for Jenny, Anne & Matt
1. Make a private appointment then transfer the care to the NSH side of his practice, or
2. Ask you GP to refer you
This is one of the most outrageous descriptions of sub-standard care I have read in all of my years of posting on this board. Consider suing the NHS. You will be blind if this continues, and probably already have permanent vision loss.
Glad to see you made it here. the UK members will help you through this nightmare you have been in for the past 9 years
It is outrageous that they have allowed this to smolder without treatment, the steroid eye drops do NOTHING for posterior uveitis or intermediate uveitis. only systemic medications and a steroid sparing approach will get this to stop destroying your eyes,
Re: Referal on NHS for Jenny, Anne & Matt
Mandy,
I'm so sorry you have had to go through all this in 9 years.
Your story made me cry. I feel for you.
I can't imagine how DR's could do this to you.
On top of it to tell you your case does not warrant being treated. Any case of Uveitis mild or sever no matter what the case may be warrants medication to halt the inflammation.
I will e-mail Jenny and tell here about you she also lives in the UK. She should be able to chime in and help you out.
Please keep us updated and let us know what happens.
I will send some Angels your way.
I wish you luck and take Care Janet
Re: Referal on NHS for Jenny, Anne & Matt
Thanks very much for your replies.
I have a feeling there are probably lots more people in the UK going through the same, just like me in blissful ignorance. I was lucky, I stumbled onto this and the Iritis site which has certainly opened my eyes into how lacking my treatment has been. Hopefully I'll soon be on the right track.
I would rather ask my GP for the referral, but will wait and see what the UK members think. Don't want to upset the applecart by going over the consultants head especially if I'll need him to administer any treatment plan. Really have no idea how the system works.
Re: Referal on NHS for Jenny, Anne & Matt
Travel the 1 1/2 hour trip and let professor Dick follow your case, don't mess around with the clowns treating you now as they will only interfere down the road. what you might need is a rheumatologist. get referrals from your Primary care physician. to both Prof. Dick and a rheumatologist once you have seen Prof. Dick. you many have to see a top notch Rheumatologist at a teaching Facility in order to get approval quickly for MODERN drugs, other than the steroids used so far.
Re: Referal on NHS for Jenny, Anne & Matt
Hi Mandy,
I was very sorry to learn of the problems you have had in getting decent treatment, and in having your request for a referral listened to and acted upon.
I am not sure where you are currently being treated, but would suggest you go for a referral through your GP as it sounds as though your eye clinic are the ones who have so far refused to pursue the matter on your behalf.
The information below is taken from the Bristol Eye Hospital web site and outlines the referral guidelines for GP's to access the urgent care clinic:
Urgent Care Clinic
Tel: 0117 928 4613 Fax: 0117 928 4777
The Urgent Care Clinic is designed to provide rapid assessment and management of urgent eye conditions. The aim is to see patients within two weeks of receipt of referral. Referral is by letter which should be faxed to the above number and an appointment will be allocated to the patient by telephone within seven days. In the letter please include the patient’s visual acuity, duration of the symptoms and the patient’s telephone number.
It is intended that the Urgent Care Clinic will deal specifically with the following problems:
Acute onset of floaters or monocular flashes. These may indicate retinal pathology such as retinal tears or detachment. Early treatment of a retinal tear can prevent retinal detachment.
Recent onset of blurred vision (usually unilateral).
N.B. Any cases of sudden dramatic visual loss should be referred directly to the Eye Hospital Accident and Emergency Department.
Sudden onset of diplopia.
Diabetic retinopathy if:
Proliferative changes (new vessel growth) or
Recent deterioration in visual acuity.
Unresolved conjunctivitis.
Entropion with severe symptoms (i.e. lashes abrading cornea).
This UCC service compliments the existing A&E service which continues as before to receive accidents and emergencies
I have also pasted below some advice I obtained a while ago from a GP friend regarding referrals which may be of help:
People have a right to a FIRST consultant opinion if they aren't reassured by the GP's treatment or diagnosis. That's enshrined in some charter somewhere. An opinion from a SECOND consultant is a bit different - have they asked the first consultant if further referral would be helpful? It's usually the first consultant who refers on to a "tertiary" or more specialist centre but a GP could certainly do it.
Cost should certainly not be a reason for refusal to refer to a second consultant. Having said that some PCTs are refusing to fund referrals to consultants outside their area. If the first consultant refers on this doesn't really apply. I'd change GP if I wasn't having any joy - that's
easy enough these days in most areas.
I believe you will need to stick with the NHS route to get to Professor Dick's uveitis clinic as I don't think he works outside of the NHS. A telephone call to the eye hospital would confirm this.
Good luck in finding your way through the system to get a 2nd opinion. Stay with it, and let us know how you get on.
All the best,
Jenny
Edited by: codford2002 at: 8/7/05 9:17 pm
Re: Referal on NHS for Jenny, Anne & Matt
Hi Jenny,
Thanks for your wisdon.
I have a question; sort of about how the system work I guess.
As I read the posts, she was referred to an ophthalmologist. Is that what you mean by "consultant". Are they the "gatekeeper" in the system for what I would call "specialist" care?
Sounds like she has seen a different doc each time; trainees?
Just posting to let you know i've suffered on the NHS too. Was diagnosed with Uveitis many years ago when i was about 8ish....am now 22 and still being treated for it with steroid drops. Have suffered over 90% vision loss and had to go theough so many operations to try to correct damage caused (which haven;t really worked). I was sent around to all the experts when i was younger and had test after test to try and figure out what was wrong with me (apparently its unusual to have uveitis without a cause). Well, i'm still without diagnosis. Still have bad inflammation and still looking for answers. Unfortunately i have takken the option of a law suit due to the irreversible sight loss, and am gathering specialist reports as we speak. It breaks my heart to be doing this, especially as we know the state of the NHS and funding etc. but i have had to change career options and risk losing my driving licence etc as a result.
A telephone number for Mr Dick is 0117 928 4949 (am currently doing a prject at work on retinal specialists!). I think its his secretary. Send him a letter directly explaining your situation and see if that gets a response...Bristol Eye Hospital, Lower Maudlin Street, Bristol, Avon, BS1 2LX
Feel free to e-mail me on flossie@ivenus.com if you want.
Not sure that I can do your question justice, but I'll have a go.The hierarchy for medical training in the UK is:
Medical degree (usually 5years)
PRHO - Pre Registration House Officer (1 Year)- on successful completion full registration with General Medical Council may be gained, enabling practice independently as a Doctor
SHO - Senior House Officer (2 - 3 years)training in a number of different specialities.
Trainees who wish to go on to apply for Specialist Registrar posts in Opthamology must have completed min 2 years in college approved SHO posts and passed the MRCOphth exam plus basic microsurgical skills course. By my reckoning, I believe it would be from this point on that they could be referred to as 'Opthamologists'.They can then apply to enter Higher Specialist training.
SpR - Specialist Registrar (4 - 5 years)This is a period of specialist training. By the end of this stage should have completed relevant medical exams for chosen speciality.
Consultant - On successful completion of specialist training in a chosen speciality - can apply for a cereer grade post - a consultant or GP principal which are viewed as career pinnacles.
So, if you are referred to an Opthamologist, then you could be seeing someone fairly newly qualified, or someone has worked in the speciality for some time. In my experience hospital Dr's don't always introduce their full title so its not always easy to tell how qualified and experienced they are.
Each hospital will have a number of different postholders at different levels within its hierarchy and clinics will normally be held under the lead consultants name. Generally speaking, patients could see any of the Dr's working a clinic on a particular day, unless they have specifically requested to see a named individual, or have a complex case where the more junior Dr's have referred the patient up the line of expertise. In my understanding the consultant, or at least a senior experienced member of the team would be available during the clinic times so there should always be the opportunity for the medical team or the assertive patient to access someone more experienced.
I hope this answers your question! Feel free to 'shout' if its not clear.
I started writing this last night and then was interrupted by lots of phone calls……
My sister is an NHS consultant(public health)and she explained a little about specialist referrals: she said that inter-hospital referrals are the best option - because of budget issues. If your local hospital refers you on to a uveitis specialist there are no budgetary issues, but if your GP refers you to a specialist - the treatment costs come out of a different pot of money - associated with the GP practice, I think. Your GP may be perfectly happy to accept these costs - but it is worth being aware that GPs may be under some financial constraints that make it hard for them to pursue your treatment wishes. I do hope I have remembered what she told me correctly.....
So there are two tricky problems:
a) getting a referral from the hospital involves bruising the egos of the hospital doctors involved
b) getting a referral from the GP involves a potentially problematic cost burden
Re: Referal on NHS for Jenny, Anne & Matt
Thanks again for all the info and support.
Phoned for an appointment with my GP yesterday, thought it would be quicker than waiting till Sept.for my next eye unit appointment, but he's on holiday until the 22nd.
So last night I sat at the computer and emailed a letter direct to Andrew Dick asking for his help.
I recieved a reply within minutes to say he couldn't read his emails until the 21st, so I gather he's on holiday as well!
Never mind I'm determined to get there one way or another, just have to be patient for another 10 days.
Re: Referal on NHS for Jenny, Anne & Matt
I am sorry I have just come across this message.
I am very interested to hear of such cases as there are very good uveitis specialists in the UK working hard to prevent this lack of appropriate referral.
I am keen to pass on examples such cases (anonymously unless asked otherwise).
If you are in the South West then Andrew Dick would be the obvious choice. The best approach if there was any difficulty in getting your GP to make a straight referral is to treat it as a second opinion request. You have, of course, every right to do this and it can be made be either your GP or your present eye specialist.Referral on from the eye clinic is always more straightforward as far as funding etc goes, but this is where all the problems lie and when you are insisting on a second opinion, then the GP shoud be taking on the legwork for you on this.
A second opinion should be a win – win situation for a doctor. The patient either gets better treatment or comes back reassured. It is difficult to work out why this does not happen so often.
I would be keen to hear how things work out.
nb We will be holding an open meeting at Bristol this November (watch our website and group to group on this site for confirmation of date
Phil Hibbert
info@uveitis.net www.uveitis.net
I recieved an email back from Andrew Dick on the 22/08 saying he would be pleased to see me but I would need a referral from my GP or Opthalmologist.
Today I had my normal hospital appointment, I plucked up courage and told the nurse I'd like to be seen by the consultant. After having to wait till last I finally saw him and he has agreed to refer me!!! ( After I insisted though! He personally doesn't think I need to go to Bristol.)
I think Ju is right about the bruised ego, there was a distinctly frosty atmosphere and I have the impression he's washed his hands of me, has not given me another appointment.
Eye examination revealed an epiretinal membrane in my right eye, both eyes discribed as quiet, have to stay on 1 drop/day of Pred Forte to both eyes indefinitly.
Phil, You're welcome to pass on my case anonymously to whoever you like.
Thanks to everyone for your help and support it's really appreciated.
Re: Referal on NHS for Jenny, Anne & Matt
Mz
andy,
sorry to learn of the progression to an epiretinal membrane. hopefully it won't continue to grow. because of this development you might as Professor Dick about the need for a fluroscein Angiogram of the eye to make sure you do not also have cystoid Macular Oedema another complication to inflammation allowed to run amok for years. I pray you do not but a baseline of your eyes should be done and then repeated from time to time as even mild CME can cause permanent loss of vision if left untreated.
please keep us posted of your upcoming appointments.
Re: Referal on NHS for Jenny, Anne & Matt
Hope you get a speedy appointment, Mandy, and feel the relief of knowing you're in expert hands. The reduction in anxiety is immense.
Best wishes,
Maxine
Re: Referal on NHS for Jenny, Anne & Matt
Mike, thanks for the advice, I will certainly do that.
I have suffered with CME previously and the Consultant wasn't sure on Tuesday whether it was playing up again or not. The sooner I get to Bristol the better!
Maxine, you are sooo right about the feeling of relief. I've been on a high ever since and can't stop grinning.
Re: Referal on NHS for Jenny, Anne & Matt
Mandy
Hi, I was realy sorry to hear about your problems with the NHS! Reading your very frustrating story made me realise how lucky I have been with my Consultants in the Sunderland eye infirmary here in the north -east.
Sam is 8. He was diagnosed with AN 'EYE PROBLEM' by the school nurse when he was 5.We were eventually referred to a paediatric consultant optholmologist at the eye infirmary.The speed at which things moved from there made me realise just how 'sick' sam's eyes were.(many tears followed)BUT These people were fantastic.I guess we struck lucky. Had we not I have no doubt that Sam would now be blind.
Uveitis had already destroyed his left eye before we even knew about it, that was frightening and very hard to take.His right eye was smouldering too.
Drastic and aggressive action was needed.We were referred to Prof Lighman In London, who took a look at Sam along with a retinal surgeon friend of hers ,diagnosed uveitis and then was happy to share care with Sunderland.
3years down the line, I am thankful to say that after many surgeries(19) and lots of heartache for us but mainly him! his vision is stable in the right eye.His left eye is effectively blind.
I believe that seeing the same consultant every time we go for check ups has had a massive effect on sam's treatment. We have built up a rapport with him second to none!!He also has back up consultants who know his case inside out so that when Mr Steel is unavailable or we have an emmergency and he is not in the hospital we still see somebody who knows Sam so well.Mr steel is always only an email away or a phone call and I am forever grateful to him.Continuity of care in uveitis saves sight, of that I have no doubt!
I hope that you can see Mr Dick as soon as possible and that all your problems get sorted.
I wish you loads of luck, please let us know how you get on?
annette and Sam. xx
Getting that referral and playing the system
Dear Mandy,
Firstly, sorry for not replying to this earlier. It has made me realised I havent stopped by here for far too long.
Reading the thread it looks like you ar eon the way to finding someone who will care for your eye problems properly. That's great news. Be sure to keep everyone informed as to how you go.
Mike is Right- a fluorescein angiogram is a good thing for someone with your history.
Try to keep an account going with your local hospital in case you get a flare or a hint of a flare. It is always useful in an acute situation to have someone close. Your local consultant will probably be happy for an external expert to manage your case anyway to be honest, not that they would ever admit it!
![:[angel]](http://users.marshall.edu/~hack1/images/angelsmiley.gif)
Janet
Janet
Topic Commands
Click to receive email notification of replies 
Click to stop receiving email notification of replies