Raise Awareness

Some people with ichthyosis are experiencing problems obtaining cream, lotions and/or clothing garments on prescription from their GP. Some of these issues are as a result of guidelines issued by NHS England that are being misinterpreted by your local Clinical Commissioning Group (clinically-led statutory NHS bodies responsible for the planning and commissioning of health care services in your local area/GP).

Parliamentarians have told skin patient 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 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.

MPs can not only attempt locally and confidentially to address your individual issue by writing or speaking to the local health agencies and commissioners, but they can also seek to influence national policy by raising the broader issue within Parliament. This includes asking parliamentary questions, writing to the Department of Health and Social Care, leading a debate or meeting Ministers.

A couple of MPs have agreed to lead within Parliament on a dermatology issue recently raised to them – patients struggling to access appropriate dermatological treatments. Patient groups have informed MPs that refusing access to or rationing of some dermatology treatments, particularly emollients, is occurring. The All Party Parliamentary Group on Skin (APPGS) told them this threatens the health and well-being of millions of people with inflammatory skin conditions. Importantly, this is contrary to clinical guidelines which recommend their use, and leads to significantly worse patient health outcomes.

The APPGS have written a template letter which they and us would greatly appreciate you considering sending to your local MP. MPs welcome correspondence from constituents (you) and will try to respond to every constituent.

We hope that your letter will lead to your local MP taking up the cause on your behalf within Parliament. If enough MPs are prepared to send questions to the Department of Health and Social Care, which shows broad support on the issue, then we will be able to encourage the MPs leading on this issue to go to the Secretary of State for Health with all our concerns and seek meaningful commissioning change.

The patient voice has become extremely important and MPs do take note so please write to your local MP if you experience issues with obtaining items to manage your ichthyosis on prescription.

When corresponding with MPs they require your address and full name.  A simple method for writing to your MP online can be found by typing your postcode in here (opens in new tab), clicking on the MP and then filling out all the details.

A letter does not need to be extensive or long. It should succinctly outline your grievances and the steps you would like the MP to take.

You can find your MP’s contact details via www.parliament.uk (opens in new tab).

Click here (opens in Word) to download the template letter to send to your MP.