Mama's Life & Blogging

My Plan to Fundraise for Better Health

FUNDRAISE

Well as you may know I have a condition called Adrenal Insufficiency which really does affect my day to day living and that of my family. In order to improve my quality of life, I am wanting to fundraise to see a private Endocrinologist and to pay for the Adrenal pump, a medicine unavailable to me as an Adult via the NHS.

I’ve done all I can and decided the best way forward is to speak with my Endocrinologist at the end of August, (my next appointment) to see if he will help me as a private patient. My Endo is limited with what he can do as an NHS doctor and so he may be willing to help more if I were private.

FUNDRAISE

The thing is, seeing the Endo I’ve been under for 3 years could in fact help save time sending files and notes from place to place and could help save having major tests redone which a private consultant may require.

In the meantime whilst I wait to see the specialist, I will save and fundraise as much as I can. The worst case scenario is my Endocrinologist will say “No” he cant help privately and then I would need to order all my notes for Β£50 and take them to a brand new specialist who is willing to help me privately. However that would mean a few trips to London and several tests and more money so my first aim is to save and see what my Endocrinologist says.

So that is my plan, I am going to be making a list of all the things I want to do to raise the money for the treatment I need and create a blog post of ideas of creative ways to fundraise for my medical treatment.

I should be able to get this help on the NHS but sadly this treatment which I know really does help is not available to me as much as I have tried to get it. So this is the next best thing.

I’m doing my best, I’m losing weight to get to a healthy BMI, this will help cut down the cost of medications in future and simply be better for my body. I’m resting and have started to make lists of everything I need or can do to focus on getting well.

This is the big plan and I hope it can work. I’ve come a long way in three years and had so many tests, I have been sick and in and out of hospital so many times and it’s time to move on with my plans and goals.

The huge thing is I know a Endo who works with the Adrenal Pump, it’s just having the money and resources to be treated.

Fundraising for summer, Here I come.

If you have any ideas of ways to fundraise please do leave a comment below.

42 Comments

    1. Very True. I did share my health story in the Chorley Guardian paper last year but if Sylvia does a sponsored event then i may try to share that with them and see if they will run it!

  1. Well done you. There are many ways you could fundraise:
    You could hold an event, sell items and all money goes towards the fundraising, go on a walk / run x

  2. How frustrating that the NHS isn’t giving you the treatment that you need. People shouldn’t have to fundraise in the UK to get the help they need. Best of luck, and if there’s anything we can do to help just let us know!

    1. I agree. it does bother me a lot but ive tried so hard and been to 3 different NHS places…It’s tough and annoying. Part of the issue is not enough knowledge about my condition and specialist with experience working private or elsewhere.

  3. I’m so sorry to read that you are in this situation were there is little more the NHS can do, I really hope you manage to see a specialist that can help you privately and best of luck with your fundraising. I notice someone else has commented about going to the local papers, I think this is such a good place to go to to help raise awareness. x

    1. Thanks Zoe. It is a stinky situation but I need to do something. We are planning a sponsored event for my daughter and will hopefully try to get the local paper behind us.

  4. It is such a shame that you are not getting the help you need from the NHS. I wish you luck in raising the funds, and improving your condition. xx

  5. Hi Angela

    I’m not sure whether you have been keeping an eye on the work of Professor Peter Hindmarsh at Great
    Ormond Street with CAH pituitary patients. If not, I think it would be worth your while looking at his information on hydrocortisone replacement and pumps, at http://www.cahisus.co.uk/pdf/TRANSCRIPT%200F%20MEETING%2014%20JUNE%202014.pdf (or if this link does not work, go to http://www.cahisus.co.uk and click the left hand link for Articles and then click on the link for the Meeting 14 June 2014). This is useful material to give to your endocrinologist to support your case. I recently went to a presentation by Professor Hindmarsh where he additionally said that if a patient is being denied a hydrocortisone pump on grounds of cost that may be wrong. He pointed out that some hydrocortisone pills are very expensive, so that over a period of years it may cost more to be on them than on the pump, which typically costs Β£2,000 to purchase and Β£1,000 a year to maintain (the Solu Cortef solution used in the pump is very cheap). So it’s worth checking with your GP how much your hydrocortisone pills cost. I’m also battling to persuade my endocrinologist to to a 24 hour cortisol test. I’ve been waiting 2 months for a reply to my request, sent with the supporting material from Professor Hindmarsh. But I did copy the request and information to the endocrine nurse, and recently talked to her about it. She sounded supportive, so if you haven’t talked to the endocrine nurse it might be worth doing so. (I have hypopituitarism, do not have such great problems as you, but do think my medication as currently spread is not matching what should be the normal 24 hour cortisol curve, particularly at night/in the early hours which is when I have most problems. So I want to get tested, to check this, and then if necessary adjust the pattern of medication as a starter, before considering whether I might need a pump). By the way Professor Hindmarsh says testing cortisol in hospital conditions does not throw up false results if it is done over 24 hours and is not affected by exercise, lack of exercise etc.

    1. Thanks Belinda. Yes I have been following Professor Hindmarsh’s work for the past three years but thanks for sharing this on the blog. I am told it costs too much and I know that is wrong. It’s the excuse I’m constantly given. I am awaiting appointments and going to hand in all the documentation in my next Endo appointment to see what help i can get but its a battle and should not be! I had a 11 hour day curve not 24 hour but i know i have issues in the night early hours and that must impact me in the day! thanks for your info.

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