Hi, I’m Emily and I am the Public Affairs Assistant at Genetic Alliance UK, the charity that runs SWAN UK (syndromes without a name).
I support Genetic Alliance UK’s policy and public affairs work – with a particular focus on Rare Disease UK, which like SWAN UK is one of its initiatives. As part of the policy team I analyse, research and assist with briefing on parliamentary and policy developments across the UK. This role means I also enjoy working with SWAN UK to keep them informed and up to date on any public affairs and policy work relevant to the undiagnosed community by helping explain what it means, and how it might affect the SWAN UK community.
You’ve probably seen a few posts and comments around SWAN UK recently about our plans to set up an All Party Parliamentary Group (APPG for short) on rare, genetic and undiagnosed conditions. I wanted to write a blog for SWAN UK to answer some of the questions that you might have about the APPG and what it means for you.
If I’ve missed anything, or you have more questions please don’t hesitate to get in touch with me!
What is an APPG?
All Party Parliamentary Groups (APPGs) are informal, cross-party, interest groups of MPs and Peers interested in a particular issue. Cross party means they have politicians from all the different political groups involved and so they are a great way to make sure everyone in parliament knows about the issues they cover.
APPGs are not funded by parliament and do not have any power to make laws but these groups can act as pressure groups for specific causes helping to keep the government, the opposition and MPs informed of parliamentary, expert and public opinion.
There are lots of APPGs covering everything from global health to beer!
What will an APPG on rare, genetic and undiagnosed conditions do?
Increase awareness of rare, genetic and undiagnosed conditions in parliament through inquiries, parliamentary questions and events.
Help to ensure that patients and families affected by these conditions have access to appropriate care and support.
Keep MPs (and Lords) informed of the issues that matter to you.
Host events to mark Rare Disease Day and Undiagnosed Children’s Day.
Discuss issues that are relevant to all patients and families with rare, genetic and undiagnosed condtitions including transition, coordination of care and research.
In the past some APPGs have been extremely effective in raising the profile of issues and making sure that MPs and peers are well informed about the perspective of affected communities. We hope that this APPG will mean that the voices of SWAN UK families are heard within Westminster – making sure that MPs and peers are kept up to date with the issues that you face, and the actions the government can take to improve the lives of those living with undiagnosed, rare and genetic conditions.
What difference will this make to my family?
The group will influence and engage key policy makers (not only parliamentarians but officials in the NHS and the Department of Health) to press for improved diagnosis opportunities, which hopefully in turn will unlock access to effective medical care and treatment.
It will also raise awareness of undiagnosed conditions and SWAN UK with parliamentarians and policy makers – which could be useful in a number of ways, including:
Providing a voice for the SWAN UK community in parliament that will open doors, enabling us to push for those diagnosis and care opportunities.
It will help the government understand what it can do to help improve the lives of families of children with undiagnosed genetic conditions.
Enable us to push for change, including to ensure that families are given the right information at the right time so that they know they are not alone when they are faced with no diagnosis and an uncertain prognosis for their child.
Who can join?
Almost all MPs can join the group – the only exceptions are ministers and party whips (please see below). Get your MP to join by simply writing them a letter asking them to join the group.
MP’s from all the UK home nations can take part. If you live in Northern Ireland, Scotland and Wales just make sure to write to your MP not your assembly member/ MSP! You can find out who your MP is here.
If your MP is a minister or whip unfortunately they cannot join any APPGs. MPs in the shadow cabinet will not join either – an APPG is a tool for backbench MPs.
You can however still write to your MP if they are a minister or whip to make them aware of the issues – they may offer their support in a different way!
What if I’ve had difficulty engaging my MP before, or they don’t seem to care?
Try sharing images and stories about your child. Real children, real families and real life will help bring the cause to life and interest the MP (after all who could resist a gorgeous SWAN?).
Gently remind them that as you are their constituent s/he is meant to be representing your views.
If your MP can’t get involved, or doesn’t want to, the MPs of your family and friends might want to – so speak to them instead!
I don’t have much time – do you have a template letter I can use?
We do have a letter template you can use to contact your MP. Feel free to add a paragraph to let them know about your condition or interest area. Click here to download.
How can I go the extra mile to help with this important project?
Send a picture of your child holding the letter with your email or letter.
Tweet your MP with a picture of the letter or email you have written them. Don’t forget to include SWAN UK in your tweet: @SWAN_UK
If you have a blog you could write a post to share with your MP.
Ask family and friends to write to their MP too (there is a lot of power in numbers). Get your school involved.
Ask to meet with your MP (many have drop-in sessions where constituents can come and have a chat), or invite them along to an event or school to really bring home the real life behind the message (MPs tend to like a good photo opportunity).
What happens after I send the letter?
If your MP replies, please let us know what they say – whether it’s a positive or negative response we’d like to hear back from you.
Once we have enough interested MPs we’ll hold our first meeting, which we hope will help MPs (and Peers) get a thorough overview of the issues that matter most to patients with rare, genetic and undiagnosed conditions.
We will keep you all updated through the SWAN UK newsletter, blog, and E-News at every stage but if you have any more questions, or want any more information please get in touch with Emily Muir, Public Affairs Assistant at Genetic Alliance UK (our parent charity who will be providing secretariat to the APPG): email@example.com or call 020 7704 3141