BD Centres of Excellence

[devonshiredumpling]

As we all have so many questions and thoughts about the Centres of Excellence I thought it might be a good idea to have everything written down in one place. I chose the blogs rather than the questions because we can upload files to this area.

I'll start off - I'm investigating referral to one of the centres because I so want some sort of overview on my situation, as well as some fresh and knowledgeable thinking applied to my medications.

I live in deepest darkest North Devon and, although it's one of the furthest away, I think the easiest centre for me to access would be Brum, which I can get to in 3 to 4 hours.

Ah! But there's the problem! I have just moved from my previous consultant at Bristol's Frenchay hospital - where I was very happy with my care - because the travelling (about 2.5 hours each way) always resulted in a bad week spent mostly in bed. How the hell then can I hope to go to Brum. I suppose I could stay over but - well, we're not that flush financially.

What's everybody else doing and what are your thoughts? Will the protocols and guidelines from the Centres of Excellence eventually disseminate to other hospitals do you think?

[Jazzy21]

I live in Scotland and my current situation shows we need a centre up here. But when I have asked I was told it was not needed. I have met with an illness which is taking my sight, my mobility, my hearing and my health and not one clinician can help.

[Dundee1963 in reply to Jazzy21]

Hi Jazzy21 I've decided to ask my MSP if we can get referrals to the new centres of excellence.Difficult to understand the system.Hope to get some clarification on the Scottish situation.

[devonshiredumpling]

Could the Behcet's Society not give you a guiding hand in how to try and move things forward up there? They're obviously very experienced in this, having moved mountains down here. It was a long process but they did it. I think I would consider contacting them and asking for support/guidance/ideas etc

Di

[dawnie2750]

maybe im a bit slow.. but I thought that when you were diagnosed that a BD specialist was assigned to you...thats what happened with me!!! I live in Carlisle..

GPs dont have a clue, I have on several occasions had to spell the word!!!! My specialist is based at Newcastle but holds a clinic at the cumberland imfirmary every month, to which I attend generally every three months or more regular depending on how bad I am...Is this not the case of everyone??

I was diagnosed at a gum clinic of all places...and because I was in such a state of shock at being told I had herpes..(screaming and shouting) the physician asked me other questions and then asked me if Id ever heard about the silk road disease... and it all happened from there...

I would push to see a specialist, and if your gp is not forthcoming then write to your mp...they are the people to get the job done...and fast!!!!

[BSSAdmin]

Hi, there is more information about the Centres of Excellence in the Society's newsletter which should be emailed/posted to you in the next 3 weeks, so keep an eye out for it. However, to answer some of the queries above, we are fully aware of the strain of visiting long-distance hospitals. For this reason, we've worked to ensure that our members need only visit one of the Centres once per year. That way, you'll be registered and seen by the team at one of the Centres, then your ongoing care can either be retained with your current, local hospital or if you choose, can be moved to the Centre.

Unfortunately due to the devolution of the NHS, Scotland, Wales and Northern Ireland parliaments have opted not to utilise the Centres which are provided in England. We are very disappointed at this decision and will continue to work to lobby in these countries. We will be looking for support from our members in these countries going forward, so please keep an eye on our website and newsletters for appeals for help.

Thanks

[Dundee1963 in reply to BSSAdmin]

Can I ask who in Scotland made that decision?

[toothfairy]

They appear to have been abetarirly chosen as centres of excellence, and indeed I would like to know the criteria with which these centres where chosen with.

I feel they have been opened without a great deal of thought, and it seem to have been rushed through.

If they were located by geographical information supplied by the Society, then I would like to say that membership is voluntary and there are many people with Behcets who are not members. Therefore, their needs have been disregarded in this instance.

I have been quite happy with the multi-disciplinary approach that my Behcets specialist has. Although they are 1 1/2 - 2 hours away, this is better than the 3 1/2 - 4 hour journey to Birmingham. Stopping over is not a viable option, and at the moment short journeys have a knock on effect of several days to a week to get over.

Along side of this, one of the big consciquences of the opening of the Centres of Excellence, is that the regions will loose the rights to prescribe certain medications, such as Anti TNF.

So as things stand, even if my consultant felt I needed it, it couldnt be prescribed for me, I would have to go to Birmingham, whether I wanted to or not. It would be then up to them to decide if it was warranted. This will result in inevitable delay. It would be interesting to know how this will impact on people requiring treatment, for example with eye involvement.

[BSSAdmin]

Hi Toothfairy,

The centres were chosen very carefully based on the best information there is in the UK on where Behcet's patients live and where the consultants who wanted to work with the charity to improve the care of Behcet's patients are based.

The Centres may feel like they've been rushed in, but unfortunately the timescales were dictated by the National Specialist Commissioning Team. They awarded the contracts on 22nd February 2012 with an opening date stipulated as 1st April 2012 which as I'm sure you'll agree is an incredibly tight timescale to work towards. Each of the Centres is now holding clinics and will continue to develop the model.

The regional centres CAN still prescribe Anti-TNF treatment - the difference is where the funding comes from. Previously hospitals applied to the local PCT for this treatment which resulted in a postcode lottery with some of our members being successful whilst others in quite desperately ill health were refused. With the opening of the centres, the budget moves from the PCTs across England to the Centres. They have a protocol of when they will fund Anti-TNF treatment. This is working already with several patients in regional centres receiving prescriptions via the Centres without having to travel on a regular basis to the Centres.

I'm pleased you're happy with the treatment you're receiving and there is no reason why this should be affected.