Merely an Accounting Problem

[Howget]

In January 1998 the late Dr. Martin Lockwood treated me with a drug then called Campath, (Alemtuzumab) at Addenbrooke’s Hospital Cambridge. I was suffering with Wegener’s Granulomatosis. Since then the Vasculitis Clinic at Addenbrooke’s now headed by Dr. David Jayne has been monitoring my condition annually and I am very pleased to say that I have not needed further treatment. And I have had excellent care.

At the beginning of September this year I received to my surprise a letter from the Abertawe Bro Morgannwg University Health Board informing me that I had been referred to their Renal Outpatients Department. I was surprised as I had never been in contact with any doctor regarding renal problems.

However, on making enquiries with my local primary care centre I was informed that the reason for the referral was that Addenbrooke’s had made an application for funding from my local Health Board and that they had refused on the grounds that I should be treated ‘locally.'

Not one of the bodies involved, my G.P nor my local Health Board had had the decency to inform me of their decision. In fact I was due to attend a clinic at Addenbrooke’s at the beginning of October and if I had not queried the referral to the renal outpatients I would have unknowingly attended the clinic at Cambridge.

It would appear that we are not patients under the care of the NHS any more, but merely accounting problems. And after fifteen years my health is now in the hands of an accountant.

[PMRpro]

I believe you should be able to apply for special funding - and appeal the process. I'm not sure how it works now since they changed the local admin but I imagine Addenbrookes could advise. There has recently been a fuss in Wales because people could not get referrals to specialists outside Wales even though there weren't any in the particular field in any Welsh hospital.

The NHS has not been a National health service at the mercy of accountants for a very long time - London has made darn sure of that. Divide and conquer is the motto.

[Howget in reply to PMRpro]

Thanks PMRpro. I have been told that to appeal would be futile.

[Suzym2u Moderator Vasculitis UK]

There is a big problem in Wales regarding referrals to England for rare diseases such as Vasculitis because of the cost to the WHA. The expertise in Wales seems to be limited to treat and manage certain rare diseases. A consultant in Wales can complete and Individual Patient Funding Request (IPFR) to refer a patient to England if they feel there is a need, but this is something you must discuss with your "new" consultant Howget. Please let us know how things go for you.

Susan

[Howget in reply to Suzym2u]

Thank you Susan. I shall certainly keep you posted.

[jaffa12]

I am sorry to hear what has happened. I was interested in your post because I took part in the original clinical trials of campath under dr lockwood in 1995 and have not known anyone else have this treatment for WG. All the best

[Howget in reply to jaffa12]

Thanks for your posting. I am sure that like me you thought the world of Dr. Lockwood. What a wonderful gentleman! in the opinion of a consultant in my local hospital in Aberystwyth I would not have survived without the Campath treatment.

[jaffa12 in reply to Howget]

Hi yes he was a great doctor. I had six years of multiple different treatments before campath and campath was the only one that damped down the illness. Unfortunately it was too late for my kidneys and I spent 13 years on dialysis until I had a transplant. I had a flare up last year and had rituximab which worked well. Hope everything goes ok.

[Howget in reply to jaffa12]

Thank you Jaffa 12. Best wishes to you too.

[Kenneth]

I too had campath & CD4 treatment under Martin Lockwood starting in 1995. I had 3 sessions over a 2 year period before I went into remission. Since then I have been seeing Doctor Jayne, I have come out of remission on 3 occasions. I had Ritaximub over a 2 1/2 year course which finished December 2011 & am still going strong. I was under the impression that if you are ANCA GPA positive , the Rituximab treatment can be given without approaching the local medical board? Obviously this is at Addenbrooks & not sure if because you live in Wales, if this applies.

[Howget in reply to Kenneth]

Thank you Kenneth. I am very fortunate that apart from prednisolone I have not needed treatment for W.G. since the campath. But Dr. Jayne and Sister Stella Burns have been my rock for over a decade. Health Board accountants have now decided to remove the rock.....