Treatment for uveitis; NHS England funding decision

We live in the UK, England my has already suffered permenanton sight loss in his left eye and his right eye is underthreat he is only 7. Due to the severity of his condition we have managed to get him to hospital who are investigating possible causes but to date his uveitis has been deemed idiopathic. However, we have been told that despite him having sight threatening uveitis, If no underlying cause is found due to a recent NHS England decision he will not receive anti-TNF Treatment, despite it being prescribed routinely nearly everywhere else in the world and Scotland and England. I am devasted how much sight does my son, have to loose. I am terrified he will go blind. Please if you have a moment and I hate using this board for this purpose but if you feel that all people with sight threatening uveitis, regardless of the cause, please sign this petition;

change.org/p/nhs-england-ca...

It has been started by a charity called Olivia's Vision.

Thank you Rebecca

6 Replies

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  • Hi Rebecca,

    I'm stunned/horrified that the NHS has removed funding for these meds, when research shows they can make a huge difference in the lives -- and sight! -- of patients. I've posted info on my facebook page, with a link to the petition.

    Hugs,

    Joanne Z.

  • Thank you very much. I feel so desperate... But with family help we can pay for my son to have HUMIRA but if chronic blinding uveitis is enough, we have to pay for the drug also.

    I did of course meant it is funded in Wales and Scotland and but not England. Thank you so much for your support.

    Becca x

  • I am currently on cellcept for uveitis.i am so sorry that you and your son are having to go through this. I have signed and shared on FB if there is anything else I can do to support please post on herex

  • Thank you, your kindness is touching. Just feels like nobody else cares and I am scared beyond words. Makes every day function difficult.

  • Can only imagine how you feel. My son has been ill and under investigation got various things including Behcets. It's hard to stay stay strong when a child is ill. Does your son have Bechets? Cellcept is thankfully still working for uveitis, humira is/ was my back up. Take carex

  • I have signed the petition and posted on FB. This is a disgusting and stupid decision by the NHS/Government. First the greedy/self-serving/corrupt people cause a global economic crisis, then they make the poor and afflicted pay for it because they are an easy target with little power.

    I hope things improve for you.

    I had uveitis half a dozen times and no one from the NHS even came close to suggesting any sort of investigation into underlying causes. I ended up diagnosing myself using Google and writing a letter to my GP before I got any medical recognition.

    In my case I thank my "lucky stars" that I managed to do that and catch things early-ish.

    Hugs

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