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As a parent with Adrenal Insufficiency and chronic illness, I recently set some new health goals. I think my goals are in someway similar to the goals of the past but then some are different and I thought I would share them here on the blog.
It’s not been easy the past few years. I have ups and downs, not so good days and better days and living this way is and can be a huge emotional roller coaster at times.
So I have been thinking about what I want to focus on for the next few months.
My number one priority is to keep working on my vitamin levels. My vitamins can be rubbish at times and there is always something low and making me ill. If it is not Vitamin D, it is B12, or zinc or folate or low Iron.
It is a constant battle and almost like a pop up crocodile game that you see at the fun fair. As soon as I get one condition under control another plays up and I am always trying hard to fight it.
Writing About My Use Of The Adrenal Pump
So my first goal for this week is to book in to see my GP and book my B12 injection. My B12 is overdue. I was supposed to go to have it last week but I was heading towards an adrenal crisis and ended up missing it. So first things first, my B12 injection.
Then I need to see my GP. I want to talk to her about making a new application to the NHS for funding of my Adrenal Pump medication and giving sets.
I have been on the pump 15 months and twice I have applied and been told “there is no clinical evidence the pump benefits me” therefore I can’t have funding.
It is a lame excuse as there is plenty of evidence but I think I am going to have to build a case myself to prove this. The difficult thing is that I cannot apply for funding myself.
My Doctor can do it but not me. My doctor is busy and she does not have time to put hours into it to build a strong case or research and find the evidence so I am going to begin working on a case study of myself to show that I have benefited and that I do deserve funding.
The good news is I am now part of a completed research study by The London Clinic about my experience on the adrenal pump and it concludes that the pump has reduced my hospital stays and my costs to the NHS significantly.
I am going to use this as one of my key pieces of evidence. Along with my GP medical records.
It really annoys me at times because I am an unwell person and I should not have to fight as hard as I have to get the medication and to try and get it funded.
There are others on the medication in the UK and I know it is a post code lottery game and why should my family and child suffer financially because of the area we live in? It’s not right.
So I am going to create a case study on myself. However in order to do this I will have to pay £50 to order all my medical records from the GP, so that is my next task.
I am going to write a concise study and research the costs of everything and write my own study to try and convince the NHS board to help me.
At the end of the day, my medication and costs is far cheaper now than it was before I went on the pump.
They simply have not wanted to hear my doctor when I applied and appealed and I feel I need to make my own case and ask her to hand it in with her application.
So that is my second goal. I am not well so I am going to take some time to write this case study. It will be like a university study and it wont be short. My last appeal letter was 6 pages and did nothing it was simply my words.
This next one needs to be inundated with the facts, the dates of appointments and hospital admissions and everything I can use to help support my cause.
It is not going to be easy and I am giving myself four months to create the document I will need. Then I will give it to the Doctor and ask her to apply for me again.
This is yet another battle I need to overcome and i shall. it will just take time. So that is my plan for now and I sure hope it works.