St Thomas' Lupus Clinic cuts

[Helly72]

Is anyone else on the patient list at Tommies lupus clinic? It's called the Louise Coote Clinic? Have you heard about the cuts to that list? Dr Davies has resigned, her sessions have been cut and patients are being discharged back to their GPs.? Quite a blow for long term lupies who rely on having the service there in times of urgent need.

[larissa]

i am supposed to be seeing dr sanna in march !

[Danielle2419]

Yes i am, but i dont no Dr Davies i am with dr d cruz but recently have been seeing Dr shingle at the kidney clinic there i cannot believe that really cant the other patients be seen by some other doctor there its really bad every lupie patient should be checked at least sometime to see that theres nothing out of the ordinary

[MandieR]

OH MY GOD!

What the hell is happening to the NHS?

I see Dr Sanna and am due in March, so am keeping my fingers crossed

[Jaxqueline]

That's really bad news - I've had Dr Davies in the past but now have Prof Vyse for an appt in March. It's ridiculous, I have an excellent GP but he does know his limitations as far as SLE is concerned.

[Dumpypug]

I'm under Prof D'Cruz, my understanding is that patients who have their lupus under control are being sent back to their GP, with the option to be referred to a local rhuemy. If the lupus flares or is uncontrolable then you can re-refer into St Thomas.

If you need a referral to a more local rhuemy then do your research and find one with a special interest in Lupus, you can search on internet or phone rhuematology departments in hospitals to request info on all Drs

xx

[nicky1234]

its wrong what they are doing with nhs, i am fighting the govenment on this, and we had a victory the other month. they were getting ready to privatise some parts of the nhs.

we all protested and for now they have backed down.

look up 38degrees its a non polititcal protest group. it is fighting many of this govenments policys and so much more. x

[Hidden]

This is news to me! I just asked my doctor to refer me back to St Thomas' to get a thorough check up.

[Donnelly]

I got a letter on Monday about this, but I been ok for the last 10 years, but just the last 9 months I been getting ill and I really needed to see them as the treatment I am on is not working and where I live the PCT is not giving me the funding for a new treatment so I really needed to see them, my GP is writing a letter saying I need to go, I was just upset that my appointment was on 2 April but I don't know when I get in there again, Dr Davis as left St Thomas now I was seeing here there but I just need there help, I am luck in a way as I had lupus for 16 years and the treatment I been on all the years have worked up to now I was young when it come on I was 13, I know this is not the end for me I will get better again and get my life back, if I was not ill not going to St Thomas wouldn't be so bad coz you can always go back

[Helly72]

I am told that the clinics held by Dr Davies have been axed, the patient list has been reviewed and if you are considered to be stable you will be discharged to your local PCT. The main problem with this comes if you are on certain medications that require regular monitoring. Some local GPs do not want to deal with drugs such as leflunomide. You can be re-referred to the Louise Coote but there is a long long waiting list to contend with. I have spoken to my GP and have been given one more appointment with the rheumatology dept up at Guys and St Thomas'. It may be wise to anticipate and deal with this problem rather than simply react to it.

Good luck!

[juliapulia]

I received the "letter" this week - I was beyond surprised because they have since December doubled my Cell-Cept prescription of cell-cept because I was feeling so ill. I missed an appointment last December because I had had a hip replacement and then an evulsion fracture of the same hip. I couldn't get in the car because of the pain and told them. But the letter said 'you missed an appointment'. My GP yesterday said he would be writing to them requesting a new appointment. (I had already been given a new appointment which has now been cancelled). My doctor was Dr Davies who was great, prior to that Dr D'Cruz. The letter was from Dr ******, who tittle tattle tells me had a falling out with Professor Hughes and is determined to destroy the Louise Coote Unit. I was at St Thomas' Hospital today and they have taken the letters Louise Coote from the sign - leaving only Lupus Unit. The charitable trust has been side-lined. Funds to improve the centre offered by the Louise Coote Trust have been refused and the Trust were moved out of the Unit to Guys (against their will) and now barely get any contributions from patients. I know that my Hip Surgeon, Neuro-Rehabilitation psychiatrist and GI consultant have written to the unit in the last months expressing concern over how Lupus is causing great physical damage and suffering to me in my joints, muscles and GI tract (many operations for both). There really must be a protest made soon. The feeling is that the Lupus Unit is planned for closure, to become part of the Rheumatology department again. This is terrible news. The same is happening with APS sufferers. What can we do?

[Helly72]

Oh dear Julia, it would seem that Dr ****** really does have it in his mind to abolish the lupus centre. I will have a chat with a few people I know, including Prof Graham Hughes, and see what can be done. This is truly a major threat to lupus and APS sufferers across the country as the Louise Coote is was a national referral centre.

[juliapulia]

Thanks Helly72, I had a call yesterday giving me an appointment in March, after my doctor wrote to them. (I don't know what the letter said). I am very relieved!

[yvetteh]

Hi, I've just been registered as a new patient for lupus at st thomas heard dr davies has left told i'm seeing a different person does santaner? not sure if I recall the name correctly had a bad few months oct to Feb has anyone expeienced being re registered when i was only there 6 months or so ago.

[yvetteh]

Can anyone tell me why Dr Davies left? and where has she gone.

[debbiemoll]

I had felt about a year ago that cutbacks were being made, as in every letter I got back after my appointmentat the lupus unit had re evaluations of my condition and actually it began to get quite confusing. About 8 years ago I was told "well you now have lupus" and today I was told, you have lupus like syndrome. I had to get my mind around having lupus 8 years ago and now, quite quickly, I am a miracle recovery and isnt that great!

I got quite upset when my diagnosis of APS was downgraded in my letters as not being primary APS as I only had 2 miscarriages, FACT: I had 3 formal miscarriages before I was diagnosed with APS . Again, this miswording of my letter immediately led me to think that this was not a mistake but done because my condition was being downgraded and they were cutting back.

Having seen my specialist today, I was told that I am doing very well, thats good isnt it! I may be discharged soon! wonderful. I am so pleased that apparently my responses to long haul airflights are my imagination, that my recent 8 hours of heaving and puking in Switzerland was just a tummy bug and that if i waggled my ankles in the plane I wouldn't get a problem anyway. All of which I found upsetting as I spend all of my airtime walking up and down the aisle of any plane journey and I clearly had altitude sickness in Switzerland.

I feel as if quite systematically all conditions are being downgraded and then I/we will be shipped out.

Is there a formal petition to sign, please give me the link.

thank you.