Ichthyosis Support Group (ISG) is the UK charity for everyone with ichthyosis and their families. We work hard to raise public awareness and understanding of ichthyosis and campaign for better medical care. Too often ichthyosis is not recognised as a serious and painful medical condition by health commissioners and policy makers.
Events
The ISG attends various events including medical conferences and teaching courses. We sometimes present at these events but usually have a stand of information about ichthyosis and the work of the Ichthyosis Support Group.
Support our campaigns
The ISG conducts surveys, provides guidance and publishes information to help people self-advocate with their doctors for the right treatments to manage their ichthyosis. We will promote campaigns and please do get involved and support when you can.
Write to your MP about emollient prescribing issues
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.
Letter for your GP if you are experiencing problems obtaining your prescribed skin care treatment
We are aware that some patients with ichthyosis are experiencing difficulties with their GP reducing, or stopping prescriptions of emollients including bath and shower products. For some members this also extends to some silk garments.
Our Medical Advisory Board have written letters that you may print off and take to your GP asking them to prescribe the items you need to care for your ichthyosis. You can access these letters via the links below.
Letter to GP re emollient prescribing
Letter to GP re emollient and silk garment prescribing
If you continue to have difficulties obtaining your prescribed skin care products via your GP please contact us either by telephone on 0800 368 9621 or by email isg@ichthyosis.org.uk
Ichthyosis Awareness Month (IAM)
The Ichthyosis Support Group (ISG) and European Network for Ichthyosis (eni) has joined forces in the efforts to promote Ichthyosis Awareness Month (IAM).
May is Ichthyosis Awareness Month (IAM). During May we encourage families and friends around the world to join together, use their voices, and raise awareness about the challenges and hopes of the ichthyosis community.
Be a part of the worldwide effort.
We’re encouraging ichthyosis organisations and advocates from all over the world to come together to let everyone know that people from many countries are affected by ichthyosis. Social media is the quickest and easiest way to be a part of this worldwide IAM effort.
How can you get involved?
Simply post a photo or video of you, your friend, relative or child with ichthyosis, using hashtag #IchthyosisAwareness. Download and print the IAM logo, and hold your country’s flag in a selfie. Why not shoot a short video saying “My name is ….., I/my child has/have ichthyosis and IAM from the UK”.
Let the world know where you are from and that you have or support someone with ichthyosis.
Use our IAM social media graphics all month long!
Are You on Facebook? Twitter? Instagram?
IAM is Going Global! Use #IchthyosisAwareness in your posts.
Bake Holiday Weekend – love baking? Why not bake during over the Bank Holiday weekends in May for the ISG? Sell your cakes, donate the proceeds to the ISG and raise awareness for people living with ichthyosis. https://www.justgiving.com/isg What a way to round off Ichthyosis Awareness Month!
Educate by distributing leaflets, chat with friends and work colleagues about ichthyosis and how it affects you or someone you know. Send us your story of living with ichthyosis and we will publish it online, don’t forget to send us a photo!
Pledge to help us continue to support families and individuals living with ichthyosis by signing up to give a monthly donation.
IAM Meet Up: Organise a local member meet up during the month of May, take photos and share online. Encourage members near you to get together! Remember to use the hashtag #ichthyosisawareness
