Getting a prescription for an unapproved treatment

[Mifford]

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?

[EOLHPC]

This is a tough one...over the past few months I've discovered just how hard it can be to wrestle a recently NICE-approved treatment out of my GP practice. I'd followed others' struggles getting prescriptions fulfilled eg specific brands vs generics. But the meds I was prescribed are a one & only.

The expensive advanced Sjogrens cornea inflammation eye drops Ikervis (the immunosuppressant ciclosporin) were prescribed by my senior NHS cornea specialist ophthalmology consultant. He organised the first box via the hospital dispensary. Then my GP dispensary refused point blank to repeat the prescription, although it'd been specified in my consultant's report.

Long story short, after a month of persevering with a lot of diplomatic liaison 😉 (I had to involve my consultant's sec, who got his help, and I had to keep my cool in my discussions with my GP & the surgery dispensary staff...this all took nearly a month), I finally did get ikervis coming through just fine from my GP dispensary....I picked up another box today...I see my consultant in 2 weeks...can't wait to hear what he has to say about all this.

Now I know Ikervis eye drops are even specified in the BSR guidelines for care of Sjogrens patients

We immune dysfunction & connective tissue disorder patients tend to be at the cutting edge of pharmaceutical treatments. So we have to have our wits about us...and be ready to fight for these things if the system tries to stonewall us. My case was helped by the NICE approval....am vvvv much hoping you can succeed in getting your unapproved treatment.

am vvvvv interested to see your replies as they roll in

And am hoping you'll keep us posted

🍀🍀🍀🍀 coco

[Mifford in reply to EOLHPC]

Unfortunately as it's not an approved prescription it's out of my GPs hands and down to the local Care Commission to approve the funding for it - at least I think that's what it's called. They've now refused to even consider it point blank 3 times and have said the only other step available to me is to take it to the ombudsman. Stupidly the cost of it from what I've found is around £20 a tube so it's in line with the other sunscreens I have and isn't unrealistically expensive. They're just referring it back to Guys even though I know other areas prescribe it. Just not sure I have another fight in me what with going through the PIP appeal process too

[EOLHPC in reply to Mifford]

Thanks & sorry: am vvv much feeling for you

my long reply is saying that the diff between your prescription prob & mine is that your med is an unapproved treatment. I was attempting to say that even recently approved but unusual immune dysfunction treatments like my ikervis can be hard to obtain...and that I know this all to well...which means am imagining your fight to get your unapproved treatment will be even tougher.

🍀🍀🍀🍀

[Mifford in reply to EOLHPC]

Don't worry I understood 😊

[EOLHPC in reply to Mifford]

👍😘🍀

[maggielee]

Hi sorry to hear about severe photosensitivity having scle is challenging enough at least I work in a UV protected environment. Thanks for sharing. Ml

[cathie]

I can't answer your main question but you might be interested to know Ninewells hospital (NHS Scotland) treated me for sensitive skin and they gave me a sample. So it is used here. However it's awfully thick and I decided just to avoid the sun and only use dermol as a moisturiser. Good luck

[Mifford in reply to cathie]

It's not so bad if you mix it with normal sunscreen - the biggest problem I have with it is leaving brown stains everywhere that look like fake tan! Lol

[cathie]

Yes that's what id do too. I forgot to mention that ninewells is in Dundee so maybe they invented Dundee cream, like the cake and the marmalade.

[Mifford]

I'm having a day updating for anyone that has an interest - the ombudsman have now passed my complaint to a case worker and I've suggested they may be best telephoning me so I can explain the situation as on paper really doesn't get across the combination of problems that the refusal to prescribe locally causes. I've also been given some advice by a local advocacy group about other appeal routes that might be available to me but haven't got around to reading them yet.

I can give perfect examples of how their stubbornness is so ludicrous though - since I've been blocking light more effectively I'm now reacting more strongly than ever as I've lost any natural resistance now (ironic huh? Aaagghh). So at my recent appointment after an hour under lights on the train and two hours in the waiting room I was struggling with fatigue and joint pain and knew I wouldn't manage to carry tubes of sunscreen to the train with crutches and being caught on a commuter train let alone be able to queue in the pharmacy for 45 minutes under a low ceiling with really strong lighting. I asked the consultant for an FP10 prescription that the local Care Commission told me was the solution and he told me in theory they are right but nobody in the department has a prescription pad any more! As they don't use them they simply don't have the stationery now as everything is done either on a hospital form or electronically.

So he told me to take the form round to the pharmacy and ask them to post it. The guy on the counter told me they can't do that unless they are out of stock and there was a 50 minute wait as they were so busy. I literally begged him and was almost in tears and they agreed as a one off but warned with Christmas it might take a while. Yesterday I get a phone call apologising for the delay (it's been about 4 weeks) as it turned out they didn't have enough in stock for me (I'd have just cried if I'd waited 50 minutes to be told they'll have to send it after all) and the suppliers had also run out and had to make a new batch. He asked how many tubes I had and I said 1 1/2 so that'll cover me for about 2 weeks - he asked if I was at home all afternoon/evening as he was sending them that day as he was worried if I ran out before then for any reason. I assumed he meant posting special delivery for the next day but about 8.30 last night the doorbell rings and its a delivery of my creams!!

So Guys take this so seriously that they courier my creams all the way from London to Sussex to ensure I don't run out (which did scare me slightly as I've been trying not to get overwhelmed by it and been playing it down in my head) and my local Care lot won't do anything to make it any easier as they tell me I can just get it somewhere else and if I run out it's unfortunate. How on earth can it be better for the creams to have to be couriered at that cost to the NHS as opposed to me ordering on my computer and even if they were out of stock the creams would have arrived at the chemist yesterday and I'd have driven the 1/2 mile to go pick them up an hour later?? Plus if Guys take it that seriously I'm guessing that if I ever do run or it's going to have consequences that are likely to need treatment and even more costs to the NHS let alone the effect they have on my quality of life. All because some woman who refuses to actually speak to me on the phone so I can explain decides that she won't shift a simple rule even for a unique and exceptional circumstance. Absolutely ludicrous.

I see an appointment with my mp coming up in the new year when I get time too!