Primary Care Trust & Growth Hormone

[wintye]

Hi

 

Long post, sorry

 

My daughter was diagnosed with a syndrome (I won't say which one for our privacy) that requires her to have growth hormone.

 

It was diagnosed by a normal blood test by her paediatrition in October. It took 3 months to get an appointment with an endocrine specialist (growth hormone) and he advised it would be a good idea to go on Genotropin (Growth Hormone). We agreed.

 

This all took nearly 5 months.

 

Once it was all reffered to my GP, which took about 4 weeks he got in touch and advised that it is a red flag drug and it needs the very 1st precription to be signed off by the specialist. This he was told by the Primary Care Trust.

 

I went back to the specialist and they advised that this has not been agreed in their budget so they cannot sign it off either. They avised the people that arrange all of this are the Primary Care Trust.

 

I called them and they wouldn't speak to me about it and advised for me to go back to my doctor. My doctor has called them several times and so have the specialists. They are advising they have new system in place and they need to know the figures for all children on Growth Hormone and the finance this costs then they will arrange the budget for any new prescriptions. The NICE (National Institute for Clinial Excellence) has a guiline in place since 2002 that all girls with this syndrome (if reffered by a specialist) should be authorised to get the growth hormone.

 

I have been told by the support society that I belong to that they are just stalling becasue it costs alot of money.

 

I have tried to speak to the Cheif Executive at the hospital but he is always in a meeting. I have also written a lettr to my MP. I have had a reply advising my leter has been received but no proper reply as yet.

 

We have spoken to PALS at the hospital and the lady I spoke to has adivsed the endocrine department that she will speak to the Chief Exec on Thursday 7th June 07 (when she gets back off hols) as I had threatened to take this to the press. (don't really want to though).

 

Is there anything I have missed or does anyone know of any other way I can get them to sign this off?

 

Any help would be greatly appreciated. I thank you for taking the time to read and any replies.

 

Take Care

Claire

[Panthro]

Sorry to hear of you and your daughter's situation. Unfortunately, PCTs cannot authorise every treatment possible, even on the advice of a specialist. And NICE guidelines are that, guidelines.

 

Dont feel downheartened though. Keep on at the GP, specialist and anyone else who will listen.

[medsec]

Sorry, and I may not be much help but I was secretary to an endocrine consultant for 6 years, and I do know some ins and outs. Even if your consultant recommends treatment the PCT do not have to accept, which is horrible for the patient. When I was working there (up to last year), what you were told was correct: first prescription is signed off by hospital, then the PCT has to take over. However, with the targets and deficits affecting the PCTs and hospitals, I'm not surprised your PCT says it's changed.

 

Can you try arguing that growth hormone treatment now would mean fewer complications and therefore less money spent on her care later on? Also, there is a questionnaire that doctors do that calculates the effect on lifestyle etc, with a grading system (sorry can't remember the name). If you can get the hospital to do such a questionnaire it can show that her quality of life would be compromised if she didn't get the treatment - that might also help?

 

Hope you can get them to give her the right treatment.