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Lifechanging medication not on NHS

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Please look at my Facebook page ‘Behindhersmile’ for more about my story.
I have a condition called ‘Neuropathic Enteric Dysmotility’ otherwise known as a form of Intestinal Failure. I was born with my intestines outside of my body and needed surgery immediately after birth. I was lucky enough to have a good childhood and was well. At 10 years old I suddenly came down with Peritonitis (infection of the bowel) I had surgery again to cut away part of my intestines and remove all infection. This was a success and the doctors thought that would be the end of the problems. When I turned 18 in 2013 things went wrong. Suddenly I was unable to eat without pain and feeling sick, this got worse and worse. I was constantly in A&E who couldn’t find the problem. We came across a hospital called St Marks which is a specialist hospital for bowel related issues and intestinal failure. I managed to get a consultation with Professor Clark who agreed to help me. By this point she told me that due to the amount of weight I had lost and continued to loose due to not being able to eat, if I hadn’t seen her when I did, I would no longer be alive! Therefore she admitted me urgently in June 2014. I underwent various tests and eventually had a laparotomy (incision all the way down your torso). This was when Prof Clark discovered the issues. The bowel was all in the wrong places, I had a complete malrotation, a huge amount of scarring from previous surgery which was causing my intestines to stick together and onto the stomach wall. Prof Clark took biopsies (cut out tiny segments) to send them to the lab to get a diagnosis. Seeing the damage, she had no option but to disconnect my small intestine and bring it out into a stoma. (Usually known as colostomy or stoma bag) she also had to put in a central line. This is a way of getting direct access to the veins, as now I was having to be fed through an IV drip called TPN (total parenteral nutrition) in order to stop me losing any more weight. It had to be IV because my stomach issues meant that I don’t absorb the important vitamins, fluids and minerals. 
It is now 4 years on and I am still under the care of St Marks under the intestinal failure team. I still have a central line in place, as it’s the only way I can stay hydrated and get minerals and calories. However I am now on my 7th Hickman line since 2014. Due to me getting life threatening sepsis 6 times in every line I have had. I also still have my Ileostomy (stoma) bag. This can’t be reversed and will be with me for life because the nerves in the bowel are beyond repair and so it would be too dangerous. 
I take lots of medications every day to make the symptoms a little easier. I have to take Fentanyl (a very strong opiate painkiller) nutritional supplements, anti sickness etc. Due to absorption problems, I cannot just take a tablet. I have to have medication in other forms, eg. Patches which stick onto the skin and release the drug, injections, medication that melts under the tongue, IV through my central line. 
These medications are so important when trying to live life as normal as possible. I cannot work due to these issues. 
One of the medications I am on is an anti-emetic (anti sickness) it is given both injection or IV. Without it I cannot even sip water. Due to my GP cutting budgets and it being too expensive, they are refusing me the correct amount of the drug for the entire month. Although it is on my repeat prescriptions they can’t afford an entire month. They are also arguing that they will not supply the needles and syringes required to administer the medication. Simply due to the cost of it. I was told to either ‘buy the needles on amazon’ or ‘go to a needle exchange’ which I think is absolutely disgusting. You cannot guarantee that needles are sterile from buying them from a stranger on the internet! And I am not happy to have to go to a needle exchange on my own In my condition due to money! As you can imagine someone that needs a simple drug to stop you being in A&E and live a relatively normal life and being told it’s money related is heart breaking! 
Therefore I have recently had to go and see a private GP to ask their opinion, they agreed this is insane and not fair. I barely had the money just for the consultation as I am only on benefits. However this GP was amazing and so supportive. She done a Private prescription for me which supplies the needles and syringes in order to administer the drug safely and in a sterile manner. And a month supply of the Anti-sickness drug as well. I was so so happy that finally someone was willing to help. That was until I saw the price! 
So I am making this page to try and raise £500 so that I can have the sterile supplies of needles and syringes and a month of my anti sickness. If anyone would like to donate or help in anyway I would be absolutely blown away and so grateful, as this would change my life! In the meantime I will be making a complaint about the fact I’ve had to do this all on my own. But for now I just want to be able to live a relatively normal life. 
£500 would be able to supply a box of 100 needles, a supply of 50 sterile syringes and an entire month supply of anti sickness. 
Thank you to everyone who even just reads my story it means the world to me! 
I also have a Facebook awareness page called ‘Behindhersmile’ which I use to document my ongoing treatment and condition.
After this gofundme page going live it has been in the press in newspapers and online news. This is due the outrage at the community at how a patient can be told to go on Amazon and buy ‘sterile’ needles. And even more the fact that I am expected to pay for medication and supplies which I need to stop me being in hospital.
This was in The Sun, the Metro paper and online, Dailymail, Inews, the Mirror etc. If you search my name it will show you if you’d like to read any of the articles.
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Donations 

  • Anonymous
    • £50 
    • 6 mos
  • robert cullen
    • £10 
    • 2 yrs
  • Chimango Gondwe
    • £10 
    • 2 yrs
  • SANDRA DANIELS
    • £50 
    • 2 yrs
  • SANDRA DANIELS
    • £50 
    • 2 yrs
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Organizer

Charlotte Bonwick
Organizer

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