Has anyone had the same problems as Real Ale?
Recently his consultant changed his immunosuppressant from Azathioprine to Cellcept (mycophenolate moefetil). He collected his prescription from the hospital pharmacy. This was fine until he nearly ran out and asked his GP for a renewal.
His GP refused to prescribe it (Cellcept) as he hadn’t received a letter from his consultant. His GP, through his surgery, asked him to ask the consultant for a letter explaining why he was now on Cellcept and the dosage. The consultant duly responded and confirmed that he was on 500mg of Cellcept twice a day. Except Real Ale wasn’t. He had been upped to 750mg twice a day… and so his doctor refused to renew the prescription until he had a letter confirming this… Real Ale suggested to his surgery that he could explain to the doctor why he was on this medication and how he should be monitored and what tests were needed. This offer was declined and Real Ale had to write once again to his consultant asking for all this to be made explicit.
In fact it was nearly four weeks before Real Ale was able to get his prescription for Cellcept sorted out. It seems he was a victim of the ‘Shared Care’ protocols which specify (or should) the respective roles of one’s own GP and the consultant in the management of a patient’s condition.
It seems to me that this might be a common problem. I had a battle with my own GP in the beginning, until my consultant very kindly rang him up and explained – the GP had said it was down to the consultant to get in touch with him when I suggested he phone the consultant up, not the other way around! This required phone calls and faxes from me to my consultant’s secretary before the necessary conversation took place.
Our message to patients is be persistent, you are the only one who can sort the problem out even if you have to act as go between… And if your consultant has promised to write to your GP check that your GP has actually received it!
My GP won’t prescribe me Cellcept even with a letter from the Hospital, although he does very kindly give me a monthly blood test for which I cannot have a printed copy for my Consultant unless I pay for it!! Every time I visit Moorfields they have to give me enough Cellcept to last me until my next appointment which if I am not seen for 3 months is an awful lot of tablets ( I am on 1g twice a day). It always seems to be about money!
Perhaps as with many things ‘NHS’, you simply have to be lucky – when I first started taking Cellcept many years ago, I chatted with my GP who readily agreed to provide repeat prescriptions, conduct blood tests etc.
They have done so ever since and I can pop in before visiting Moorfields to get a photocopy of my blood results (no charge).
Small glitch when I had a letter from the surgery to say they proposed changing my enteric coated prednisolone to the other (yucky tasting) type. This to save money. However a letter from Moorfields backed my request that this change should not happen and I now continue with the EC pred.
The GP worked with me to arrange local bone scans to save me time visiting St Thomas’ and sent the results on to Moorfields.
I suppose what I’m trying to say is that between Moorfields and my GP practice, I feel extremely well looked after.
Even my local chemist works wonders when trying to source Cellcept…not an easy task these days!
Having attended the BUS conference, the cosy bubble I existed in has somewhat burst; I have no horror story to tell, no difficulties to speak of and was shocked to hear of the daily challenges both medical and practical so many others experience in their journey with Birdshot.
I just wanted to share my positive experience of working in partnership with medical professionals. I do not consider, and do not give ‘permission’ to anyone to call me a patient – I am not ill, I live with a condition and view myself and the professionals as equal partners in managing it’s progress. Seeing myself as a partner gives me the confidence to negotiate with people who I might otherwise have felt daunted by.
Being a partner in the care of one’s self is very important. It allows for compliance and the outcome is always better. You can call it shared care.
One of the statements that I don’t like is when someone with birdshot is called birdshot patient. To me this is saying that the person looks like a birdshot and is defined and controlled by the disease. The statement should be ‘Person living with Birdshot Chorioretinopathy’.
I have had numerous problems – mainly having to do with dosage of a med being changed but this not being communicated to the GP in time for the repeat scrip. I now make it a point to get involved myself. Also I now only deal with one GP at my surgery who trusts what I tell him, and call him straight after I see the consultant. What it all comes down to, in my case, is the inefficiency of a system where everyone communicates by post and as noted above, where everyone likes to defer responsibility to someone else. I’ve had a letter take up to two months and in one case, it was simply never written.
I’ve changed GP once since being diagnosed with Birdshot. The first surgery would write prescriptions willy nilly and do the blood tests they were advised to do in the letter form my consultant. Great when you are the one wanting the stuff without the hassle. But they really did only do what the consultant’s letter told them to do. My new surgery are much more proactive and seem to take an interest in the drugs I am on and making sure I’m getting all the right tests done in a timely manner – checking up on a regular basis to go in for a chat about the medication. It’s more ‘hassle’ for me (who likes a simple life) but I feel properly looked after. They also went out of their way to get the cellcept on local prescription for me – as this health authority has it ‘flagged’ as something only a hospital can prescribe. Wasn’t like that with the old one.