As I've put in other posts I was recently diagnosed with severe photosensitivity with solar urticaria to all visible light and a separate lupus photosensitivity, again probably to all visible light.
As the normal prescribable sunscreen is not enough for me my consultant at Guys has prescribed Dundee cream to reflect all light to help, as well as putting me on major daily doses of anti histamines. He has however said the antihistamines wont work with the lupus side so the cream is essential both indoors and out to enable me to try and minimise the reactions.
Having taken the prescription to my GP they advised that they can't prescribe the Dundee cream as it's not approved - I'm guessing it's as it hasn't been clinically tested - and at my request they wrote to the local Commissioning Group who rejected the request to approve the prescription. I put in an appeal on this and they wrote and told me they don't approve prescriptions not on their formulatory list. So I appealed again and asked for an explanation as to why this couldn't be overruled in my case and they advised that there were other treatments available for solar urticaria and it therefore couldn't be justified and that Guys can prescribe this or provide me with an FP10 form for me to obtain from a local chemist.
I gave it one last throw of the dice and asked them to tell me what other creams were available at my level of photosensitivity as I didn't know if any and told them the reality of trying to get the cream from Guys .. they prescribe enough to cover me until my next appointment, then they discover they can't get an appointment as quickly as they should so you will run out of cream by then. So I spent 3 weeks ringing the only number I had and couldn't get a reply or anyone to ring me back and after emailing them eventually 2 more tubes turned up out of the blue without getting a reply.
I had the final reply today saying that as there is no other cream available to me approved on their formulary I will have to get the prescription from Guys and giving me the ombudsman's details to appeal.
As I object to the NHS having to meet additional postage costs that aren't necessary and for convenience reasons for me - it really does make a difference to me getting it locally but I won't give a big description of why - I am seriously considering contacting the ombudsman with my case. Has anyone else challlenged a similar ruling and had any success or am I wasting my time on this one?