Possible specialist lupus centre at Aberdeen Royal Infirmary?

[junemc]

Currently there is no specialist lupus centre in Scotland, something which I feel is desperately needed. I have heard from another member of this community that a Lupus Centre of Excellence may be planned for Aberdeen Royal Infirmary. Does anyone have any more information about this? I would love to know if this is definite and what the timescale is.

[Paul_Howard Partner LUPUS UK]

Hi junemc ,

We haven't received an application from Aberdeen Royal Infirmary to become a LUPUS UK Centre of Excellence yet - although we would certainly welcome one. The criteria to become one of our Centres of Excellence can be found on our website at lupusuk.org.uk/centres-of-e...

[junemc in reply to Paul_Howard]

Thank you for this info. It would be wonderful if this happened. There is a real need for a specialist unit in Scotland.

[MrsMouseSJ in reply to junemc]

There most certainly is, junemc!

[Wendy39 in reply to junemc]

Same in Wales. Was just about to post myself about this! x

[AgedCrone in reply to Paul_Howard]

Pardon my ignorance...but with no record of supplying treatment for Lupus...how can a hospital become a centre of excellence?

Do they import a whole department of experts ?

[KayHimm in reply to AgedCrone]

I can tell you what they do in the US. It is probably similar. They pour money into a program. They hire top doctors away from other places. They bring in the latest technologies, and hope researchers do outstanding things to put them on the map.

One difference between our systems is that programs and hospitals compete for patients in the US. Hospitals try to attract wealthy donors and get government approvals to expand. In the U.K. the government can do whatever it chooses to do, right?

Interesting question. Curious what others speculate.

[AgedCrone in reply to KayHimm]

Ah....But you have private medicine and the money can come in from drug companies and private companies and private individuals. ...& can be recouped by charging patients any fees they can get away with from the insurance companies...who are probably shareholders anyway.

In the UK ambitious doctors apply for jobs that excel in their speciality....,they don’t want to be one overworked Lupus doctor in a hospital that is probably miles away from home.

The NHS is not free ....everybody working pays a contribution every month until they reach pensionable age, to pay for it.

The service is free at point of use...but in fact we pay for it throughout our working lives.

Here we have national health services which are given budgets, and some of the reasons there are no lupus specialists in Wales and Scotland are because (a) the Rheumatologists in both countries do not have the training & (b) there is no money to pay for them or the equipment needed.

Well that is not strictly true .....they are given a budget but they have chosen to spend it on something different. One hospital in Wales spent £400,000 building a helicopter pad but omitted to put lights on it....That was nearly two years & I don’t know if money has been found to fix it yet. That was when the majority of patients were brought in from accidents at night.

The have abolished car parking charges & prescription drugs are free.

In England we pay car parking & over 18 under 60’ish pay £9 per drug for a prescription drug.

Have you heard the expression.....”A camel is a horse designed by a Committee”?

Well here we have it demonstrated in the NHS ! It was a good idea at the time, but as it is a political football........every time we change government it changes direction.

[Paul_Howard Partner LUPUS UK in reply to AgedCrone]

Hi AgedCrone . You can read the criteria for becoming a LUPUS UK Centre of Excellence on our website at lupusuk.org.uk/centres-of-e...

We require at least one consultant with specialist knowledge of lupus and a dedicated Specialist Lupus Nurse (for which we accept applications for grant funding).

[AgedCrone in reply to Paul_Howard]

The point I was making was if S&W have no Lupus Specialists.......how can the criteria be met.....to get funding to open a specialist unit?

I am in England & have RA, not Lupus, & I just feel it is so wrong there appears to be no way to override these Officials in the Health Authorities in Scotland and Wales who refuse to accept Lupus patients need specialist treatment? They are either super ignorant or purposely withholding vital medical treatment from very sick people. I do appreciate their funding may be inadequate but surely things should not be allowed to remain like this?

It is downright inhuman in a rich country like the United Kingdom in the 21st-century.

These officials appear not to believe the eminently qualfied Lupus Specialists in England whom some Welsh & Scottish patients have managed to see. It is unbelievable they don’t believe world-famous doctors but give no credible reason.....the whole situation seems to be going around in circles.

Will Lupus specialists be recruited from outside S&W to open the

Proposed Unit In Scotland ? Are there any trained Lupus nurses available like the Rheumatology nurses we have for RA? I really know very little about the situation......but I do know it is not how any UK NHS is supposed to be run,

Has anybody from the Lupus Society approached the Minister at Westminster in charge of funding for the devolved nations, & explained the situation? As far as I can see it seems to be kept a deep dark secret between uncooperative officials and patients desperate for treatment.

[Paul_Howard Partner LUPUS UK in reply to AgedCrone]

Hi AgedCrone ,

Firstly, there are some lupus specialist consultants in Scotland, Wales and Northern Ireland. The problem however is that there are not enough of these specialists and they are not necessarily evenly spread for accessibility. The problem goes much further than just a lack of lupus specialists, but extends to a lack of rheumatology specialists. Funding is certainly part of this problem.

In many cases people with lupus will be under the care of a 'general' rheumatologist and this will be suitable for their treatment and monitoring. In some cases people with lupus do need to be under the care of a specialist and we believe that they should receive referrals when this is the case. We are supporting the work that Wendy and the Pembrokeshire Lupus Group are undertaking in Wales to overrule their 'gatekeeper' policies.

As training and development of student/junior doctors is a requirement of all LUPUS UK Centres of Excellence, the hope is that the next generations of doctors coming through them will go to other hospitals and run their own departments/centres in the future. There are some trained lupus nurses around, but often additional training will be done with new recruits.

[AgedCrone in reply to Paul_Howard]

Thank you for that information Paul... As we are reading here there are indeed many Lupus patients in Wales (& Scotland) who do need urgent access to a Lupus specialist....NOW. The odd consultation with a Rheumatologist is not sufficient fir their needs.

These patients are very sick & can’t wait for new doctors to be trained....and who is going to persuade medical students to choose firstly Rheumatology & then specialise in Lupus? As is well known it is not a “go to” clinical speciality like neurology or orthopaedics.

The fact that Wales does not have enough rheumatologists cannot just be accepted not to provide treatment when it is available & can be provided in England...if Wales pays for it!

Has Lupus UK approached NHS Wales via a Freedom of Information request asking why the problem of out of area requests for urgent treatment for these seriously ill Lupus sufferers does not appear to be being addressed with any urgency? After al it is a very serious, even life threatening situation.

NICE Regulations do apply in Wales...& they don’t appear to be being adhered to...I haven’t got the section verbatim..(if I close this to refer to NICE I will lose what I have written) Their regulations do say if treatment is available it must be provided.....it says nothing about “out of area” being banned.

Wendy has been battling away now for so long with limited success, don’t you honestly think NHS Wales could do more than organise meetings with people who honestly don’t seem to understand the seriousness of Lupus.....& obviously have no intention of taking their heads out of the sand & getting to grips with it?

[Paul_Howard Partner LUPUS UK in reply to AgedCrone]

Hi AgedCrone ,

We're very aware of the seriousness of the problem and we are doing what we can to bring it to the attention of those who are able to drive change. Our Chair of Trustees has attended various meetings with officials in Wales, including the Chief Medical Officer.

The NICE accredited guidelines for the management of SLE aren't regulations. They are recommendations of best practice. Obviously we would like to see these being followed across the whole of the UK, but there is no legal mechanism to enforce them. What we can do is question why they aren't being followed.

[Greentomatoes in reply to Paul_Howard]

Hi, can you approach the hospitals in Scotland to apply / make use of grant funding etc?

[Paul_Howard Partner LUPUS UK in reply to Greentomatoes]

Yes, and we do. We've recently had an update from one of the Lupus Specialist Consultants in South East Scotland who we awarded a grant to hire a Specialist Lupus Nurse. They believe they may have found a suitable candidate and so we're optimistic they will be able to start before too long.

With a Specialist Lupus Nurse in post they will be closer to meeting the requirements to be recognised as a Centre of Excellence.

[AgedCrone in reply to Paul_Howard]

But didn’t I read here that a Lupus nurse specialist was offered in an area in Wales & it was refused by that health authority?

Come on NHS Wales don’t look a gift horse in the mouth!

[Paul_Howard Partner LUPUS UK in reply to AgedCrone]

Yes, that's right. The offer still stands and we will continue to find a way to bring a Specialist Lupus Nurse into South Wales.

[GlasgowHen]

Don’t think it’s for lupus though

[junemc]

Thank you for this info. I will have a look.

[KayHimm]

That’s right. You got it, though drug companies would probably not be involved in establishing a lupus center. But, in the end, it is still money. It takes funding to establish any center whether it is pediatric cancer or rheumatology or cardiology. They first have to recruit the doctors. Geography is not a small thing. We have similar problems getting doctors to go to rural areas.

I would think Scotland has large enough cities to support a lupus center and certainly Ireland, no? But where will the money come from?

Two people have posted experiences with seeing junior doctors at lupus centers - probably happens in the US, too, in the city clinics - so there are drawbacks to care in academic centers.

The care in the UK does sound uneven. Does England get the bulk of the funding or are there particular challenges in the other areas?

[KayHimm]

But there are lupus specialists in both Wales and Scotland. A quick Google search shows a well-trained rheumatologist in Cardiff who wrote a PHD thesis on lupus. There is a rheumatologist is Scotland who has done what looks like valuable research on cognitive dysfunction in lupus. Many rheumatologists in Scotland treat APS patients, which they would see mainly in their lupus patients.

I think it would not be hard to set up lupus centers if the government chose to allocate the funds. It would be pretty cheap compared to setting up a bone marrow transplant unit or a new pediatric heart surgery unit.

[Paul_Howard Partner LUPUS UK in reply to KayHimm]

I think the consultant you are referring to in Cardiff is Dr Nash. He is actually now based in Swansea rather than Cardiff.

[KayHimm in reply to Paul_Howard]

Maybe he went there in hopes of opening up a lupus center?!

[Paul_Howard Partner LUPUS UK in reply to KayHimm]

I've met him and discussed it with him. He would like to have a specialist centre in Swansea but it is a bit of a way off.

[KayHimm in reply to Paul_Howard]

Well, it sounds like you at least have an interested doctor - one who understands the need. I don’t know the Wales geography. But with over three million people, they could support a lupus center. Sounds badly needed.

[AgedCrone in reply to KayHimm]

Devolution means each NHS In England, Scotland , Wales and (I believe) Northern Ireland have an NHS budget and they choose how they spend it.

From what we are reading here it seems that Wales and Scotland do not prioritise Lupus ......they would rather use the money to provide free drugs & free car parking to everybody.

These choices are of course useful for those people with chronic illnesses who need to visit the hospital often and need many drugs, but to niche specialties like Lupus.... Which the majority of the population have never even heard of..... it means there isn’t enough money to provide the clinical treatment they need.

You really cannot compare the United Kingdom’s NHS with medicine in the United States. I don’t think the majority of people in the UK would want

Private Money controlling Centres of Excellence as in the long run it would limit access to the rich....and those who couldn’t afford to pay would not be able to use them. Private money is donated to the NHS for research,& burseries, but that money is used as NHS sees fit....not the donors.

[KayHimm in reply to AgedCrone]

It may not be that they don’t prioritize lupus but that they are so much smaller they do not have the level of specialization in medicine as they do in England. I bet most of the lupus centers of excellence in England are in highly populated areas and near teaching hospitals. It is just the way medicine works - whether privatized or not.

I have a cousin with lupus who lives in a medium size midwestern town. She has severe heart disease. My New York doctor thinks she is not being treated aggressively enough. He has the luxury of being able to focus on a very narrow area of cardiology - prevention and lipidology. Her cardiologists do not have that luxury. They are treating heart attacks all day and might.

I don’t think there is any intentional over-looking of any disease in the UK or anywhere else. There are many factors that come in to play.

It is hard to have expertise when you don’t have large numbers of patients. That is why whether in France, the U.K. or the US, the most highly specialized care is available in the big cities.

[AgedCrone in reply to KayHimm]

No.... It is not that Lupus is being ignored UK wide..... it is just in Wales and Scotland they have veered off the path the NHS has been on since 1947.....when it was first introduced.....where no matter which part of the UK you lived in you could be referred “out of area”.

W&S have taken their allotted share of the NHS budget and are running a health service themselves......& they have not budgeted for out of area circumstances. I’m sure there are probably many instances we don’t hear of.....of people who need a consultation with a doctor where either W or S don’t have a specialist in that disease...& unless they pay for a Private consult....they can’t access a specialist.

The problem right now is THERE ARE LUPUS SPECIALISTS AVAILABLE...but doctors in Wales have orders not to refer their patients across the border to England to consult these doctors....because the health authority don’t have the money in their budget...& they are hiding behind the excuse that Rheumatologists can treat Lupus patients....no matter how seriously their disease has progressed.

I lived in NY back in the 80’s..prior to being diagnosed with RA ...& luckily only needed to consult doctors for annual check ups....which is another thing that doesn’t happen in the UK-you only go to the doctor here if you are sick.

Medicine here is another world KH... ...my relatives in the US are mystified by it too!

[KayHimm in reply to AgedCrone]

Sometimes it does sound like another world, you’re right there. The restrictions with out of area referrals sound dreadful. It is like being a prisoner.

Our insurance companies make us prisoners, but we continue to get tests and procedures covered even if we choose to go out of network to see a doctor.

It is all bad. I have had to worry about healthcare most of my life. And I live just blocks in two directions from some of the world’s leading lupus and APS researchers.

We won’t solve all the problems here, but it is interesting to hear first-hand how the U.K. system does and doesn’t work. The NHS was held up as a model for us Americans not long ago!

[AgedCrone in reply to KayHimm]

Actually when it is properly funded the UK NHS works well.

But too many politicians of all persuasions in the past have been too eager to boast what they are going to do to make it better, to get people to vote for them, then when they get elected......they don’t do what they promised.....hence the present disastrous situation.

Like everything a fully funded national health service needs money but the minute you say you’re going to charge more for it nobody will vote for you.

People appear to be willing to spend a fortune on the latest gizmo gadgets ....but ask them for a pound a week more for the NHS to get decent medical treatment and they run a mile.

I don’t know how one can convince people if your contributions automatically increased by X% per annum that extra money would make all the difference and maybe make the health service work.....when you need it you’ll be glad you paid...but it’s a hard sell.

[KayHimm in reply to AgedCrone]

Well put!