Give 20 year old palliative care patient entonox at home
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Hi, I’m Hannah Hodgson.
I urgently need your support in getting entonox (commonly called gas and air and given to women in labour) on special license at home. I’m 20 years old and am under the palliative care team. Over the last three years I have become increasingly unwell - I have gastroparesis/ intestinal failure (meaning I can no longer eat or drink); POTs syndrome (which can make me collapse multiple times a day); neurological hearing loss (resulting in me needing hearing aids) ; an as yet undiagnosed neurological condition and Elher Danlos Syndrome (which causes dislocations every 2-3 weeks and subluxes daily). I also have some other serious health stuff going on, but it’s a bit complex to describe here.
The reason I need entonox at home is my Elher Danlos Syndrome. This gives me hyper flexible joints and means that I suffer dislocations every 2-3 weeks. As you can imagine, this is the most intense and horrible pain. I put these dislocations back in to place myself as having to wait for an ambulance, then have a half hour journey to hospital is ridiculously painful. I am currently taking morphine - which takes 15-30 minutes to work and doesn’t even begin to touch my pain. My pain specialists are now looking at Fentanyl which is two hundred times more potent than morphine, in order to cover this pain.
Entonox will be the safest and shortest acting drug, that will help me with my pain. It is also a muscle relaxant and will help me to put the joint back in to place a little more quickly. The trouble with morphine and fentanyl is that it is extremely constipating, which is a huge no no when it comes to my intestinal failure. Morphine/ Fentanyl could constipate me to the extent that I need emergency hospital intervention, as a bowel blockage is a life threatening emergency. Entonox, however, is only in your system for a few minutes and has very few, and in comparison minor, side effects (such as nausea).
My amazing palliative care consultant has talked to the chief local pharmacist, and he was told that there is no way to prescribe me entonox in my own home.
I do not need a medication such as morphine or fentanyl that lasts for four hours and makes me drowsy - I only need a short acting one while I get my joint back in, hence the idea of Entonox. I am a poet and have just had my first book of poetry about my illnesses published. I also have a YouTube channel where I make videos about life limiting illness and review books. The opioid based medications make me extremely sleepy, and essentially end my day, meaning that I then don’t get the opportunity to make content (poetry and blog posts) that I hugely enjoy. However, the entonox would allow me to carry on with my day as planned due to its short acting nature.
My mum and I have taken on many medical procedures (including but not limited to bowel washouts, subcutaneous fluids and needle placement, use of enteral and subcutaneous syringe drivers) so that we can keep our home a home (rather than a hospital) and can maintain our independence. We would more than happily have the same training that paramedics and midwives in regards to entonox.
It is so sad that I am having to fight so hard to get a less harmful drug, one that won’t have potentially life threatening side effects (bowel blockage) and I need your help. PLEASE sign this petition and make NHS England seriously consider giving me a license to allow me to put my dislocations back in using the most effective pain relief, with the least risk to me taking in to consideration my other co-morbidities. PLEASE share this on social media. This is hugely affecting my life. Thank you.
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