Hi there, well this week has been really difficult for me health wise. I’m having a really tough time and it’s not only had an effect on my ability to blog and engage but has resulted in me feeling really sad.
When the Doctors Refuse to Prescribe your Medication
I’ve been to Hospital to see the Endo team and got some bad news. I’m really genuinely upset.
Last month after being unwell for years I was finally diagnosed with Human Growth Hormone Deficiency and after 6 months of messing around and waiting I was finally prescribed daily human growth hormone injections by my Endocrinologist at Royal Preston Hospital.
I was really excited and told by the Endocrinologist that 80% of patients respond well and have improvements in their quality of life. I was also told the full effects may take up to 9 months
I’ve been monitoring improvements and and I have to say things have improved since I started the medication. For example, I used to be in chronic pain continuously every night. This has stopped. Anyone suffering chronic pain would understand how great it is for continuous pain to stop . It’s fabulous.
Secondly my temperature issues stopped immediately. Since 2013 I have needed a fan on continuously day and night as I was always having hot flushes all the time. As soon as I started taking the growth hormone this stopped and I finally feel normal again temperature wise.
Other improvements included improvements in my muscles and strength. Improved energy levels in general and better mental focus and no blood sugar issues. To be honest the growth hormone made a massive difference to my life in such a short space of time, however this is about to be taken away!
I’m really gutted. I’ve been told I need the medication and that I meet the criteria for it, however my Doctor is refusing to write a prescription.
You see I’m on what the hospital calls a “Shared care plan”, where the Hospital identifies a need and starts me on m medication and monitors and the Doctor prescribes.
My Doctor however refuses to prescribe because my medication costs a lot of money. They tell the hospital, that they must pay and prescribe. The hospital also refuse and tell the Doctor that they must pay.
I’ve tried and tried and made numerous phone calls, I made a official complaint and was told at my local surgery that a doctor does not have to take on shared care with the hospital and in my case they refuse to (because of the cost of my medication).
I met with the Practice Manager who said they would not approve my medication or prescribe and the hospital must do this. When I went to the Hospital, I was told that in 1 years of experience my GP was the first to ever refuse to share care with a patient. i was also told until the GP agrees, I wont be getting the medication I need.
It was so upsetting to hear as I have done all I can to get my medication. It should not be my fight but has become so.
I asked the Nurse what am I supposed to do without the medication? Go back to being sick, in the wheelchair? She said Yes.
Unfortunately unless someone agrees to prescribe and pay, I cant have the medication I need. She tried to reassure me that my medication if would not cause me to die or be “life threatening”. All it means is my quality of life, pain levels, muscle function, memory and energy will be severely affected once more.
the nurse said it as if it is not important. I cant believe they are taking something from me due to NHS arguing over payment and that they would say to me, well it does not matter as it wont kill you.
IT DOES MATTER!
This is my life, my quality of life, functioning and parenting. I want to be well and was on the road to recovery after so long without this hormone. I want to be healthier and rebuild my strength to that of a normal healthy person. It matters to my child who’s mother was starting to improve in health. It matters to my little 7 year old who wants her mummy to have enough energy to play and go to the park together. It does matter!
It’s the same as telling someone who is anaemic, well come off your tablets and be exhausted, it wont kill you being low in Iron. Or telling someone with Asthma, your not allowed ventolin, just wheeze and get through. Or maybe telling someone with thyroid problems, Well your thyroid is low but you can just live that way for now.
It’s not right and it’s not fair for me, my child or husband who cares for me.
I’m so upset. Why cant the NHS, the hospital and the doctor surgery come to an agreement. My mediation runs out in 9 days. It was suggested I reduce my dose to make it last longer. Why would I do that? That would bring the pain back faster.
It’s not right to bring someone off medication promptly and abruptly especially when I don’t make the hormone myself. If it takes months to feel the full effect, forcing me to stop my medication is just mean as it will add months onto getting well when the arguing is finally sorted and someone eventually agrees to prescribe my Growth hormone.
This really is not fair and I may need to go to my MP or the local Newspaper as it’s so stressful and upsetting being treated this way. I am all ready saving up for medication for another condition (My Adrenal Insufficiency and the Adrenal Pump) which the NHS wont provide and I have been fundraising a year. I’m far from what I need. It’s so unfair and I’m just terribly upset.
This is supposed to be a good and fair system but I don’t see how it is fair for me!
An upset and frustrated