Behcet’s Centre of Excellence Does Not Work for Everyone.

[Kitty790]

I was diagnosed with Behcet’s disease in 1980. I have been treated at my local hospital by a consultant who trained with a Behcet’s expert years ago, he treats many people with BD and has treated me with infliximab for 15 years. Our treatment is tailored individually for our needs, this may include raising or lowering the dose of infliximab accordingly. Two years ago we (being those of us with Behcet’s on infliximab) were told the funding for our treatment would now come from the centre of excellence and we would all have travel there at least once a year. I'm afraid none of us wanted to go because we were happy with our treatment, but we were forced to go! At the centre of excellence we were all told we should change our treatment to the self injectable adalimumab. Although one other person and I refused to change, all the others agreed to the change of treatment. They agreed because of social reasons not medical reasons, for example one person thought it would save her a long journey to my local hospital, another said it would mean less time off work. However, all those who changed treatments ended up feeling worse and having flare ups. They are all now back on infliximab, but not at the dosage they were on before because the centre of excellence is only allowing them to have 5mg/kg for 6 months! What is the point of all this? Before, their dosage, as mine is, was tailored to their individual needs, now it isn't. I spoke to someone at NHS England about this and they said if 5mg/kg does not control the disease it should be increased, but of course this is not happening. I'm just pleased I refused to let them bully me into changing my treatment.

[MrsB1]

I'm sorry your experience has not been the best. For balance I just wanted to say that I too am a patient of the BCoE and have been placed on Adalimubab by the centre and have found it to be somewhat of a miracle. The difference in my quality of life huge. I'm working (without calling in sick), exercising, cleaning (small fry to some but I wasn't able to before), and my ability to socialise (my energy and pain levels are under control).

Anyway, I just wanted to share that it can work for some x

[Kitty790 in reply to MrsB1]

Hi Mrs B1,

I'm very pleased to hear the adalimumab works well for you. I assume you were not changed from infliximab, which actually works even better. It's all about money really and the consultant at the centre admitted that to me. I hope you continue to do well and enjoy doing all the things you couldn't do before. Long may it last!

All the best

Kitty790

[AmandaMoseley in reply to Kitty790]

In fact many people have to move from Infliximab as the period between infusions has to decrease. They are then moved onto Enbrel or Humira s appropriate.

For some when they fail it can be successful to move back to Infliximab. It is wonderful that your Behcets is well controlled has not become resistant to your treatment - I wish that were so for all behcets patients

It is not a question of money - and, had your consultant wished to continue to treat you, there is no requirement to attend a CoE and Consultant can apply for the funding from one of the CoE's and provided they have followed the Treatment Pathway then it is granted.

[Kitty790 in reply to AmandaMoseley]

Thanks for your reply. I don't doubt anything you say but I don't think you have quite understood what I said. I and others on infliximab are still being treated by our own consultant it's just that the CoE insists on seeing us at least once a year and they totally interfered with our own consultants treatment and made most people worse not better! Everyone was doing well on their infliximab until they decided to take people off it for no medical reason. I refused to change my treatment and so, yes I have been lucky I'm still on the dose of infliximab my own consultant put me on, which is more than 5mg/kg.

[AmandaMoseley]

I did understand - what I am saying is that your Consultant did NOT have to set it up this way. There is no requirement to be a patient at a CoE to get the medication authorised.

[Kitty790 in reply to AmandaMoseley]

Oh right! Then why is the CoE making us all travel over there to see them? The centre I'm talking about is Birmingham. So we can refuse to go? Could someone tell this to Birmingham please!

[Kitty790 in reply to AmandaMoseley]

Hi Amanda, I wrote to Birmingham about this and here is their reply:

"There is a lot of patients that struggle to come to the centre. However as agreed with the commissioners all patients receiving a biologic agent must attend the centre at least once a year for funding to continue. This is for protect patients from serious side effects or unnecessary treatment.

I agree with you that you have a choice to be referred initially . Your local team can still care for you as usual once seen. I know it’s a pain to attend but its out of my hands it’s the commissioners instructions for funding arrangements".

So really we don't have a choice about going to a CoE, which I am very annoyed about because all their doing is making those of us from Leicester worse, apart from me because I can stand up for myself. Also the doctor had the cheek to say to one of the patients "well I've been doing this for a year" when our consultant at Leicester has been treating people with Behcets for 20 years or more and he trained with Professor Richard Powell who was treating people with Behcets Disease in the 1980's!!! These people at Birmingham have very little experience in comparison and I resent being told what to do by them.

[dmt14]

I have Behcets disease and fought hard for over 2 years to get funding from my PCT for Infliximab. The funding was always renewed upon receipt of a report from my consultant without any issue. When the Centres of Excellence were created, we were told that we needed to attend Birmingham every 12 months to secure funding for the following year. It was suggested by the consultant at Birmingham that I change from Infliximab to Humira and, although extremely apprehensive and reluctant, I agreed as it could possibly be more convenient and save travelling an hour and a half to see my consultant every 6 weeks. I requested that Birmingham confirmed that should the Humira not be as effective I could be administered Infliximab once again.

I have had an awful 18 months on Humira, on some occasions the symptoms improved but I have never felt really well or able to really get on with life. I managed to return to the Infliximab infusion but the CoE has not only halved the original dose but also lengthened the time between infusions to 8 weeks. I was also told last week that it will take 6-8 months to fully work as its like starting again. None of this was made clear when being persuaded to change medication and I feel extremely angry as I now have to take higher doses of steroids which have already caused insulin dependent diabetes and are having a negative effect on my sugar levels.

My consultant confirmed to me that the directive from Birmingham is 5mg/kg every 8 weeks across the board. Unfortunately not all Behcets patients are the same and surely an "across the board" attitude does not work with any disease.

Having read the comments above, I fail to understand why this is happening to me at all if we do not have to travel to a CoE and our own consultants are able to administer the drugs that have benefit for us at a dose they feel is appropriate.

[Kitty790]

Just wanted to add that my recent trip to Birmingham Centre of Excellence was much better now that a certain doctor has left. The Rheumatologist I saw on Friday was helpful, polite and knowledgeable. A big improvement, no bullying as before.