The Welsh Rule book supports Wendy

[Kevin53]

See below

[Barnclown]

THANKS kevin... OH HOW I HOPE Wendy’s campaign succeeds!!!!! 🤞🍀✊✌️

[HedgeEnd]

That's very interesting. The lines 'if a patient funds a treatment themselves and their clinician believes they can demonstrate that the patient has gained sufficiently more clinical benefit from the intervention . . .' and 'to fund NHS healthcare for individual patients who fall outside the normal range of services and treatments' surely both apply in Wendy's case. I hope it helps you Wendy x

[whisperit in reply to HedgeEnd]

The problem seems to be that these entitlements are qualified by other sections of the guidance that state that NHS Wales will not fund anything unless local service provision has been exhausted. At least, that is one of the paras quoted in the Health Board's reply to Wendy. I take it this means the local clinicians (i.e. Rheumatology) are arguing that Wendy's case is not so specialised as to fall outside the normal range of services and treatments available locally.

[AgedCrone in reply to whisperit]

As I understand it there is no qualified Lupus consultant in NHS WALES, so there is no existing service to be exhausted!!!!

The only Rheumatologist in Wendy's area is refusing to say Wendy needs specialist treatment, despite an eminent Lupus Doctof like Dr K saying she definitely does.

A lot of doctors refuse to admit they "just don't know", so hide behind gobble de gook health authority regulations.But if no facility for Lupus exists.....how can the HA keep refusing to refer Wendy to a doctor she needs.....when their authority has no specialist qualified in the speciality needed.

It's like the asylum is being run by the inmates!

[KayHimm in reply to whisperit]

I also think that is the case. Rheumatologists are specialists, and they are the specialists in lupus. When lupus patients need other specialists such as nephrologists or dermatologists, they coordinate the care. There is no specific training for lupus. There are rheumatologists who have an interest in or do research in lupus. That is the dilemma here. If the health service says the rheumatologist in an area is not capable of treating lupus, then they need to find a new rheumatologist. They train two years post internal medicine in rheumatic diseases, and their most serious cases are the autoimmune diseases, I would imagine. I think the only time the health service would refer out of the region is when a patient needed experimental medication. Would you agree?

[AgedCrone]

My rheumatologist is excellent...in his 50's ...years of experience.

Earlier this year my Dermatologist thought I might have Drug Induced Lupus..needless to say I awaited the biopsy results with great apprehension. I rushed off to see my Rheumatologist.....his response was to say ne wasn't the person I needed.....when the biopsy results were through, & if they confirmed DUL, he would refer me to a Lupus specialist .

We need more doctors like him.....he knows his limits. Unfortunately many doctors don't....obviously the people replying to Wendy have no more idea of the all round consequences of Lupus than the average man in the street. As Wendy said in one of her earlier letters,will it take a fatality in Wales to wake up these people who hold Lupus patients in their remit,& just don't know what to do.

[AgedCrone]

I am really sorry to hear that.,

All this is really disgraceful in the 21st Century in a rich country like the UK.

It seems obvious that Scotland and Wales whose devolved NHS services are struggling are not being run by the right people.

How much longer will this be allowed to carry on.?

We could I suppose bring the petition to the notice of the English Minister for Health, but I guess he couldn't interfere for fear of making the situation worse & treading on sensitive toes?

[Hidden]

I think I’m right in saying that Wendy has been discharged back to her GP’s care by the local NHS rheum as they disagreed initially with Dr K’s Lupus diagnosis.

I think they have changed their position on her having Lupus now -but still feel that they don’t need to see her due to her not having any kidney/ organ involvement/ Low disease activity?

So i think it’s not simply a case of them arguing that a general rheum will be enough for patients with the more rare CTDs - which is what most of us are told if we live in devolved nations.

It’s a case of her not being seen by anyone at all presently - same applying to dermatology I believe?

[MDHa246 in reply to Hidden]

Yes I agree that one of Wendy's issues is that NOBODY is seeing her on the NHS. I was discharged from the same hospital as Wendy and then had protein in my urine and an exceedingly high DsDNA (4x normal) and was told that it would be 8 months before I could be seen, although they did say on discharge to return if any major organ issues. I went to London at the suggestion of the GP.

[AgedCrone in reply to Hidden]

As I understand it there is no Lupus specialist in Wales that Wendy could see ......even if a NHS Wales Rheumatologist would refer her. The fact that the existing rheumatologists do not have the expertise necessary to treat Lupus is not acknowledged by NHS Wales!

The Rheumatology Lupus Specialist Consultant she has seen in England insists she does need a referral for proper treatment urgently.

She is only asking for an NHS referral not Private treatment. The cost of Lupus treatment in NHS England is presumably the same as NHS Wales....but they don't have the clinician to provide it in Wales.

The reply to Wendy's letter makes a nonsense in the statement "until all existing facilities have been exhausted" there is NO Lupus Specialist to provide "facilities" ........so what "facilities" can have been "exhausted"?

I just wish all Wendy's correspondence could be put before somebody who understands the real situation.

The people dealing with it at the moment obviously don't. They are just thinking of their Budget,& how they can talk it away.

I hope there are enough of us on this site who will keep it in the forefront,& not let these Jobsworths get away with refusing an out of area referral....for Wendy & anyone else in Wales who needs urgent treatment.

[AgedCrone]

I have checked & NICE does have interest NHS Wales, I think a copy of the petition should definitely be sent to them.

They must surely be able to offer advice about the attitude of NHS Wales towards Lupus patients as they do have experienced international clinicians on their team.

[Hidden]

Well speaking as someone who has previously lived on a Scottish island for 30 years and volunteered for NRAS for a period, as well as someone who has more recently, sat on devolved health and care improvement groups representing Scottish public and patient interest - I can safely say that all the same issues apply in Scotland to Sjögren’s, Vasculitis, Scleroderma and EDS specialists as to Lupus sufferers re specialists.

So the reality is that a) in face of a possible hard Brexit, things are only going to get worse for anyone with rare conditions, certainly in the immediate future. And b) that this is not really the fault of health boards or parliaments in devolved nations at all.

I do know that in Scotland rare diseases are often flagged up by me and others and I’m actually aware that someone who is a very high powered health economist overseeing the key decisions being discussed here, suffers from one of the rarest and life threatening of rare diseases in the world.

So if you’re looking to blame anyone for this situation then i would say it has to be David Cameron for calling the referendum and all those who don’t care about rare diseases enough to consider the impact of Brexit when voting in the referendum too.

But hey I’m being political here which I don’t really think is appropriate on HU. I just don’t think it’s fair to place all blame on those running devolved healthcare who have very hard decisions regarding the overal health economics to take. They didn’t ask for this government or for the nightmare health scenario we now find ourselves in - they are just public servants dealing with the consequences of decisions made by much bigger fish such as Grove and May.

I also know that there is a desperate shortage of rheumatologists and neurologists across the UK - and those making decisions about how many we need right across the UK are based in the south of England.

So I think, realistically, it’s unreasonable to expect devolved health boards to recruit specialists in one rheumatic disease to areas such as Pembrokeshire or the Highlands of Scotland. This would also be unfair to those with other even rarer or more misunderstood rheumatic diseases apart from anything else.

What I feel we need is a new generation of better trained and qualified general rheumatologists - because too many presently only focus on RA and PsA and haven't a clue about the other four main rheumatic diseases so I have found. There are also some huge egos floating about.

Of course this is largely why people like you, AgedCrone, receive such a good service and have such a well trodden treatment protocol path compared to many of us here. You don’t have a rare rheumatic disease and all rheumies know about RA and there are lots of treatments to try. Paradoxically this is also why Sjögren’s remains so under diagnosed and lacks specialists across the UK -far more than Lupus even - even though it’s probably the second most common rheumatic disease next to RA. No one wants to specialise in a disease with no systemic treatments they can offer sufferers. And as long as there is no really large scale research being undertaken into disease prevalence and subtypes - there won’t be any targeted treatments for us.

The same applies to Lupus to a lesser degree and also to Vasculitis, Myositis and Scleroderma. And this lack of awareness by overworked general rheumatigists - who are themselves too thin on the ground everywhere, is indirectly costing lives I’m quite sure.

So perhaps the main issue here for Wendy is just how substandard the local rheumatologist’s knowledge and attitude is? A good one like mine will at least keep seeing me and referring me for relevant tests and to get opinions from other specialists, even if she admits to not knowing enough about my presentation of Sjögren’s.

It’s unrealistic in the current climate to send each person with a fairly rare disease to a consultant in London at the NHS’s expense IF there is a very good general rheumatologist available to them locally who is seeing them regularly and seeking advice from the specialists such as Dr K themselves. After all it’s easy enough for a local rheum to get on the phone or email Dr K for further information about this and other cases if only they have the humility and desire to do so.

This is how it should work - with expertise being diseminated regularly between one hospital specialist to other more remote hospitals.

But of course it’s totally unacceptable that this isn’t happening for Wendy or others - which is why I hope and expect that she will eventually win her case 🤞🏽- because she has right on her side.