Phototherapy experiences please! Is £30/$45 per session of UVB reasonable?

Posted Fri 17 Jul 2015 07.32 by LotteB - 44 from
Founder of Skin Matters 2017 - an event for every single person struggling to manage a chronic skin condition

Hi All, My story - I have guttate psoriasis and have had for 15 years. I'm one of the lucky few who has so far been able to mostly contain the worst break-outs by changing my situation (easier for me as limited ties), oil & cling film wraps, sunshine (tricky in the UK this year!), and the odd bit of steroid cream. I do eat healthily, avoid too much sugar/meat/wheat/dairy (although these are not my triggers so I still have some), walk a lot, try to keep positive, and do freaky things like drink a glass of barley grass water in the morning with added tinctures and aloe vera juice! I don't know if this helps or if I'm just lucky. When I get a bit low or get stressed, it gets a lot harder to control. I also have horrendous scalp psoriasis (just 'over' a 7-month bout... I hope!) I tried everything - Julia's witch hazel & glycerol, coconut oil, a zillion lotion, potions, shampoos and all other alternatives, but it was coal tar and Dovobet that beat it in the end. My Mum is having to have narrowband UVB treatment privately in the UK at the moment as the NHS waiting list was 3 months! She's having to pay £50 per session (she's in and out in 10 minutes). I know free treatment should be available everywhere and to everyone, but it has led me to start researching the treatment including how it could be made easier, average remission times and the maximum per session people would be willing to pay. I am trying to work out the maximum that people would be willing to pay per session of narrowband UVB (based on an average need of 24 sessions). Most people I know with psoriasis have suggested around £30/$45-50 per session. Does anyone have any thoughts on this? (p.s. I know many health insurers cover this in the US, it's for research!). Does anyone know where the £50 per session has come from? Any help would be much appreciated! And any info re phototherapy thoughts & experiences. Thanks a lot

Posted Sun 2 Aug 2015 13.21 by TabithaTess
Have lived with psoriasis for 45 years, it has affected all areas of life, physically, emotionally and socially.

I am totally against having to pay for this treatment. Psoriasis is something we are born with and need help from the NHS to live with it and control it. I have had psoriasis for at least 45 years, and have had light treatment 4 times now. It always works and I can be 'clear' for up to 6 months if I am lucky. There has however always been a delay in getting the treatment (I think 18 months was the longest wait) by which time the psoriasis is usually so bad that it takes more than the 24 sessions (30) to shift. One of the problems is that when you go to the GP they have to refer you to a dermatologist to authorise the treatment and that can take a long time. The NHS provides free contraception to anyone, yet whether to have sex or not is a choice. Psoriasis is not a choice so why should we have to pay for treatment?

Posted Sun 15 Oct 2017 09.40 by Idy
Phototherapy, methotrexate, ciclosporin and stelara afficionado

Interesting thread. Considering private UVB phototherapy in future... 13 June 2017: GP appointment to report second severe flare up, covering around 30%. 23 August 2017: "Urgent" dermatologist appointment after GP referral. 28 September 2017: First UVB phototherapy treatment. In the 3-month wait for NHS treatment, I'm now covered almost entirely from neck to ankle and it's now continuously sore and painful, and the treatment is burning much more than the previous course. This detioration has meant that I'm no longer able to go to work or bring myself to leave home except for treatment. I'm going to attempt to ask NHS dermatologist for biologics, as I understand they can be used as a preventative measure to avoid future flare ups. Failing that, I will have to pay for a private dermatologist (£200 per consultation with Bupa) if... I mean when, I feel the onset of another flare up like this, followed by immediate phototherapy. I'd be interested to know the cost of each photherapy session. If it is £50, the minimum cost I'd be looking at would be £200 + (£50 x 30) = £1,700. Then who knows how soon the psoriasis would come back and how frequently I'd need to find that money. I'm lucky in that I do have modest savings and there's a Bupa phototherapy place about an hour away. Most won't be so lucky. Needless to say that my modest savings will run out and will not come back if I'm unable to work long-term.

To take part, sign in or register with us