Some people with Gorlin Syndrome living in England have found they can not get prescriptions for sunscreen from their GPs. This goes against advice from the NHS – people genetic conditions linked to high risk from sun light should still be able to get prescriptions for sun screen.
Gorlin Syndrome Group is addressing this problem through a Parliamentary Group. But individual people with Gorlin Syndrome can also write to their GPs. Here is a draft letter which you can cut and paste to your GP.
If you write to your MP, please let us know using the contact form on this website!
|MP’s Name Address||
Your Name |
Dear MP’s Name
SUBJECT: PROVISION OF SUNSCREEN FOR PEOPLE WITH SKIN CANCER
I am writing to you as I have Gorlin Syndrome. Gorlin Syndrome is an inherited condition which gives rise to multiple skin cancers. (Basal Cell Carcinomas)
Although people with Gorlin Syndrome are at a high risk of BCC’s induced by exposure to sunlight, we are not receiving prescriptions for sunscreen. This is because of a lack of clarity in guidance from the NHS body, The Advisory Committee on Borderline Substances*.
From the age of about 20, most people with Gorlin Syndrome experience at least 1 new BCC per year. Treatment of BCCs is restricted by the dangers of radiotherapy (which induces more cancers in people with GS) and the absence of drugs which have been trialled for people with GS.
Currently, we rely on sun protection and reducing exposure to X-rays as the only means of reducing the burden of BCCs.
Sun protection for people with Gorlin Syndrome means buying Factor 50 sunscreen, sometimes, if children have inherited the condition, for several members of a family. This does get very expensive when you consider that all the specialists we are under recommend year-round application.
ACBS are going through a public consultation on over-the-counter medicines and our patient support group (Gorlin Syndrome Group) will be making representations through the All Party Parliamentary Group on Skin. However, my request to you is to pass on to ACBS my appeal to explicitly list the genetic photodermatoses (aka skin cancers) that require sunscreen, so that GPs know who is eligible for sunscreen prescriptions.
Please consider intervening and requesting the ACBS to clarify their guidance.
- ACBS: https://www.gov.uk/government/groups/advisory-committee-on-borderline-substances & firstname.lastname@example.org
- Gorlin Syndrome Group https://gorlingroup.org/