Hitting the treatment glass ceiling....

[Herbiv4]

Hello there everyone,

Apart from having a tough couple of weeks I have also been pondering over what to do next following my recent out-patient appointment.

Between 2010 and 2012 my brother was taken ill which meant living temporarily away from home and because of this I missed my usual outpatient appointments.

As we kept being told by the hospital that my brother's long term care situation would be resolved soon, we kept on thinking we'd be able to go back home. Because of this, I did not bother to visit a specialist in Lincolnshire when I already had one here in South Ayrshire.

Anyway, a couple of weeks back I went to a local hospital where I had been told I was to see a rheumatologist.

I had said to my GP that a rheumatologist was able to prescribe medications that she wasn't able to prescribe and that this was the reason for my referral because all the drugs she and the rheumatologist have prescribed are not immune modifying drugs and so I'm flairing up at night - roasting every night... feeling like I'm being cooked in a massive microwave oven and only getting 4 or 5 hours of broken sleep before dragging myself out of bed for another day.

I did try Prednisolone but had an adverse reaction but ahead of me are at least 6 other drugs that are options that I thought I'd be offered the chance to try....

So, on the day of my appointment I find that I'm ushered into a consulting room and the doctor I see is not the doctor I am meant to be seeing.

I realise that this can be usual - a patient is initially seen by a junior colleague before possibly seeing the doctor named on the appointment letter.

I then get a full physical examination as though I'm being freshly diagnosed. I get asked if I have mouth ulcers about five times to which I say yes I did until I started taking Colchicine and I hand over a collection of A4 sized colour medical photos just in case my words alone were not believed.

After the questioning and the examination the doctor told me that I had Behçet's disease but I already knew this as in 2008 I was originally told I had Behçet's disease.

Slightly confused I could not believe what I heard next....

"Well Mr Ralph, you are taking all the available medication. The waiting list is very long so we'll review you again in 10 months to a year."

And thank was it. I had my follow-up letter last week for late June 2014..

It was a total waste of time, effort and valuable fuel in my car that I could have put to far better use.

I have written to the senior rheumatologist to ask why my "treatment pathway" has now been blocked?

I have requested to be referred to a rheumatologist in Glasgow who knows more about Behçet's disease.

If that isn't possible I have asked to be referred to the London Centre of Excellence.

Meanwhile I'm pretty angry that I have been treated this way.

I hope others reading this have not been refused treatment without being told why?

My guess is that I am now a liability because further treatment is going to be expensive to the Health Authority up here so its far better for them to pretend that no further treatment options exist.

Just needed to put this down in black and white.

Thanks for reading.....

Stephen.

[devonshiredumpling]

Oh Stephen, what a bunch of wa****s! I've heard some stories on this site but that about takes the biscuit - you have been told an out and out lie and I am so angry on your behalf. As a retired midwife the role of advocate for those in my care still runs through me like a stick of rock.

As to the question of you being a liability because you have spoken up for yourself, well, in their minds you might well be (or probably are) but you are the last person they will bully or subsequently treat badly. You see if they did that to a person who had already complained about the service, questions would be asked in high places and, what with transparency and accountability, heads would roll. So you can stop worrying on that front.

You must keep us in the loop with further events - not just because we are nosy but because offloading has its place in the 'feel better' therapies.

If you don't get a reasonable and helpful response then my advice would be to take things further; in fact, as far as you can go. You have been treated shoddily by people who should know better. By the way, I'm sure you appreciate that this is a personal response and in no way reflects any body else's opinions, professional or otherwise.

Chin up, old chap

Di

[Herbiv4 in reply to devonshiredumpling]

Thanks Di, I left that hospital totally bemused. They must have known that I'd previously been a diagnostic radiographer and they must have realised that I'd have the level of intelligence to know that what I was being told was a lie.

And I have just remembered - after the doctor told me I was on all the available treatment he offered to refer me to a pain clinic but so far I have not received any appointment letter.

I actually said that I did not want to be dependent on morephine. I'm already taking Tramadol and paracetamol. Luckily I do not suffer any side effects from the Tramadol.

I have no confidence in my GP either as she didn't even know that someone with Behçet's needed to be under specialist care.

I'm now waiting for a response to my letter to the rheumatologist. If I do not get a reply I'll write to NHS Ayrshire and Arran but at this stage I'm not holding out much hope.

I will post updates here as and when I make any progress.

I am not the sort of person who suffers clinical depression but some days when I have had so little sleep due to pain that I feel unsafe to drive; I do wonder if this is how its going to be for the rest of my days....

I'll try to keep my chin up.

S.

[nurse_ratchet in reply to Herbiv4]

Oh man, I feel your frustration and anger today. Just saw my specialist this afternoon and feel like my time might have been better spent in bed! I was tried on several meds: colchicine, MTX, imuran then finally enbrel this past May. Started a flare in October 2012 and otherwise had been good for last ten years. This flare is pretty bad and having difficulty getting it under control. With enbrel I actually get the odd 'good day' however not enough to be back at work. My voice has become so hoarse sometimes I can barely speak. My extremities go numb when I sleep. I sweat profusely daily whether it's cold out or not. I have trouble peeing. I'm always constipated( since childhood) . I've had a lot of trouble with nausea and vomiting up until 2 weeks ago when I started domperidone. She said today that I've made progress because I weaned off prednisone(10mg daily) in june as I felt no better no worse without it. That I should wean off pain meds as that is why I can't pee and am constipated. I TOLD THEM I'VE BEEN BUNGED UP SINCE I WAS A CHILD...so how do you figure?? This peeing thing has been an issue before I started opiates for ongoing pain. Thank god my gp is good and put me on a low dose anti anxiety because I would have totally lost it today in the office. This is my 2 nd rheumatologist...I can't ask for another referral! She also said that treating pain is difficult and with opiates your pain begins to become physiological pain! So I guess we are all running around making up stories about our symptoms and pain because we all have nothing else to do with our lives!!! As a nurse I feel so helpless and discouraged and think too that this is it- live with it and shut up because they'll just come back at you with nonsense. I thought doctors knew that not EVERYBODY RESPONDS THE SAME TO MEDS!! she doesn't have me back until Jan! So how long do they expect me to be off work? My last return to work failed and went off again in june. Can't work as a nurse sweating like a pig all day and no voice to speak with??!! Sorry for the rant but ABSOLUTELY NO ONE GETS IT. ALL I HEAR: OH BUT YOU LOOK SO GOOD? CAN we make tee shirts that say please don't say I look good??

[andreafm in reply to nurse_ratchet]

Yes I identify with a lot of this and even more lately. I recently had an appointment with my rheumatologist who asked loads of questions such as have you had a muscle biopsy and when was your last MRI. My answer was the MRI was 4 years ago and had never had an biopsy. The rheumatologist did nothing about my replies and said I will see you in a year. That is the third doctor who has changed my appoints to a year and not because I am better. In my opinion it is the way of things now. Funding and justifying treatment seems to be at the forefront. Behcets patients often enough are not part of the funding of that particular specialist. My behects rheumatologist runs a LUPUS clinic and his funding are for lupus patients. He has experience with behcets and I have been seeing him for over 7 years but now it seems I have become a drain on his budget as he has to justify all treatment, tests and the diagnosis. A lot of these treatments that we need are not actually registered for behects and so the Dr's hands are beginning to be tied as to what to be able to give us.

Also another hospital consultant said I need to see you in 3 months only to get to reception to be told there are no appointments for a year !!! [this all is sounding familiar as everything seems to be a year now] They suggested telephoning the secretary and trying to get in brought forward. The secretaries office is constantly on ansaphone and they never call back.

I have also had 2 appointments moved over 3 months past the original appointment date and not been told until the last minute that it had been cancelled.

The system is clogged with the policy that a new patient has to be seen AND treated within 18 weeks. Consequently knocking back ongoing patients within that clinic to their follow-ups getting further and further away.

I heard recently that a specialist Behcets clinic/consultant who has been researching and running a behcets clinic for many many years has just had the funding withdrawn and left high and dry, with the idea that all those patients [going into many 100's] can attend the C.O.E

Not all behcets patients have access/situation to be able to go to the Centres Of Excellance and/or a behcets specialist Doctor or clinic. Some of us have to rely on local hospitals and non specialist clinics.

Sorry have really got on my soap box about this one.

[nurse_ratchet in reply to andreafm]

Thanks for your reply Andrea,

I live in Canada and basically no one here has heard of BD.The rheumatologists here are not specialists in any one disease and see all auto immune disorders. I am willing to travel within Canada to find one, have done many searches online and only the USA has all the specialists. In the USA , I would be on my own to pay and unless I win the lottery that's never going to happen. I only have 1 year left of long term disability, and am on my own. So whether we find something for me that will work or not, I will be forced to lie and say I feel good and am ready to work! There is no behcet's group for Canada that I can find, only the USA. The rheumatologist that I have now works in the main hospital where xrays, bloodwork, etc can be done on site. She is also a prof at the University and I believe she is way better than the last one. However , it would be so great to see an md who is primarily familiar with BD. I shouldn't complain as I could be much worse off with a stroke, aneurysm, etc.

[Jazzy21]

We need to meet or pm me I live in Hamilton got finally good rheumy at Glasgow royal.

[LL40]

Hi Herbiv4

I'm not sure if you can be referred to a Centre of Excellence as these are all in England and you can get treatment in Scotland for BD so I don't think your Health Board are legally obliged to send you. You can however, demand a second opinion even if this is outwith Ayreshire and Arran. I don't know about any other areas, but our dealings with Fife have been excellent and they have several Consultants with experience of BD.

[Ktmc99 in reply to LL40]

I live in central Scotland and my rheumy, who openly admits she doesn't kno much about BD, is going thro the process of referring me to C.O.E. they are centres of excellence for the UK not just England.

[Herbiv4 in reply to Ktmc99]

Hi there, Many thanks for this. was hoping this was the case. I had a message yesterday saying that people in Scotland may not be entitled a referral to a C of E so I'll push for this although with a GP like mine it won't be easy.... I'll update the group when I make progress. Once again - many thanks, Stephen.

[Herbiv4]

Hello there everyone. I have made some progress following my recent out-patient appointment where I was told that I was "on all the available medication" and that it would be at least 10 months before I got a follow-up appointment.

I wrote a polite but firmly worded letter to the consultant that never saw me that day.

I listed these drugs - Azathioprine, Thalidomide, Cyclosporine, Cyclophosphamide, Chlorambucil, Sulfasalazine Infliximab, Etanercept, Interferon-alpha or Low Dose Naltrexone (LDN) and I said that I had never had the opportunity to try any of these medications.

I asked him why my "treatment pathway" had been blocked when all these treatments were worth trying.

On Monday last I had a phone call from the consultant's secretary.

I have been invited to the consultants rheumatology ward later this month and quite late in the afternoon to have a chat with this consultant to discuss the issues I have raised in my letter.

"Cripes!" I thought

In my letter I ended it with mentioning the Centre of Excellence in London and I enclosed details from their website.

I have been told that even though I live in Scotland, the C of E in London does accept referrals from NHS Scotland.

So, by the end of this month I hope to be able to post again with some more progress as to what's going to happen next.

I would imagine that the local Health Board up here will have to assess any application for an out of area referral to a C of E in England as well as the possible implications for the costs of any treatments recommended as a result of such a referral.

So there are more hurdles to come but at least I managed to get my foot in the door as it were.

Off to bed now.

S.

[scruffy1]

Hi there it sounds as though the docs here in ireland have the same thing going on i was recently seen by one of my rheumys team for about 5 minutes and he decided that i needed a meds change so instead of infliximab i would be put on thalidomide and when i questioned his logic i got a load of tripe so after a two week stay in hospital i met with my actual rheumy and she was astounded that the change was even suggested and told me the department was underfunded and it was a cost issue but i was to stay on the infliximab and that in future i am to see her and none of the other docs as there are very few bd sufferers in ireland funding is an issue it seems the needs of the many is outweighing the needs of the very few rant over i feel all of your pains !!!! !!

Regards

chris

[Herbiv4]

Hello there Chris,

Many thanks for your experience. I have had a last minute change of appointment at the hospital but I'll be seeing the senior rheumatologist on the 2nd October.

After what you've said and from useful comments from others I am going to push for a referral to the Behcet's Centre in London.

I was just wondering though.... how does Infliximab work for you Chris?

I know that no two experiences will be the same but does this ksort of medication make much of a difference?

Regards,

Stephen.