Today I made some significant progress in my fight to get funding on the NHS for my Adrenal Pump giving sets. I fought for a number of years to get Hydrocortisone Infusion Therapy and although I paid for it myself, my quality of life has improved and I have saved the NHS thousands due to less hospital stays and emergency appointments.
Last year I applied twice for funding of the adrenal pump on the NHS. The first time I was rejected with the reason being there is “no clinical evidence” that my health improved on the adrenal pump. That was a load of rubbish as my health has improved significantly. I appealed but was declined a second time. As a result I continue to pay for my Medtronic sets myself and am not supported by the NHS.
I recently received a copy of the research carried out for my use of the Adrenal Pump and the study clearly shows my improvements. I have attached the study here. It’s been so stressful and I’ve been turned away and rejected so much in my efforts that it has been hard to continue the fight. However today I made a huge effort to write a letter. It’s three pages long and addressed to my local MP.
I am hoping this will help me to progress or be considered again for treatment on the NHS and that my new “clinical evidence” will show that this actually saves the NHS thousands of pound as well as helping me to live longer and manage my condition. It took two hours to write my letter and I am brain drained but it is done.
I also have written a letter about my experience on the adrenal pump for the European Congress for Endocrinology in May 2018. They will be looking at Patient Experiences from continuous subcutaneous hydrocortisone infusion (CSHI) and I was able to write my thoughts and answer questions about my progress and how the treatment has benefited me. I am really quite drained now and feel like I need a few days to recover. These tasks were massive for me and stressful and I’m so glad I’ve done them.
My next thing is to visit my GP on Monday. I will let him know that I have written to my MP and ask him to back me with a new application/ appeal for funding and if I fight hard enough you never know, I may get the support I need by the end of the year. Fingers crossed. I will keep trying until I succeed.