As part of our role supporting patients with ichthyosis we work with and support the issues raised by the All Party Parliamentary Group on Skin (APPGS).

Millions of people in the UK live with inflammatory skin conditions, yet the general public and policy-makers are often unaware of the painful and disabling effects of these diseases. This can lead to people suffering in silence with their condition, as they are not being provided with the right information or access to the appropriate treatment. Patient groups, such as the Ichthyosis Support Group (ISG), have previously raised concerns to the APPGS over variations in the implementation of expert guidance, and ultimately care, between commissioners and providers of healthcare.

On Wednesday 24th July at 1.30pm the APPGS are meeting to discuss ‘Living with an inflammatory skin condition’ and would like to invite all MPs to this awareness event. The event will expand upon these and other pressing issues facing people with inflammatory skin conditions, including prescribing issues.

We, the Ichthyosis Support Group, are asking you, on behalf of the APPGS, to write to your MP inviting them to attend this event.  You can download and add your details to a template letter by clicking here if you are a parent, and here if you are a patient, and also download and email and/or post the invittion from the APPGS which is available here MP.  You can find the name of your MP and their Parliamentary address here www.parliament.uk/mps-lords-and-offices/mps/. It is important to include your own address in any correspondence so the MP knows you are a Constituent of theirs. Please send both your completed template letter and the APPGS invitation to your MP.

“Parliamentarians have told patient skin groups that they are rarely made aware of dermatological concerns, and therefore are oblivious to any issues. In fact some MPs have stated that they have never had any correspondence from constituents on Skin issues. This is deeply concerning since MPs are elected officials that are there to serve us. Therefore, if you have any significant concern with your dermatology care, such as being wrongfully denied treatments, then you should consider writing to your MP so that they can address it”. Quote from the APPGS.

Thank you for your support.

Ichthyosis Support Group