“I joined Childhood Eye Cancer Trust (CHECT) for Retinoblastoma Awareness Week 2019 where I met remarkable parents with remarkable children!” Peter Dowd MP

CHECT Information and Research Manager Petra Maxwell recalls our Parliamentary Drop-In Session held during May for Retinoblastoma Awareness Week 2019.

It was with a mixture of excitement and some trepidation that Patrick and I approached Portcullis House in Westminster on the morning of Wednesday 15th May. We were there to host a Parliamentary Drop-In event, as part of World Retinoblastoma Awareness Week 2019, to engage MPs in raising awareness of Rb in their constituencies.

It was the first time CHECT had ever held an event like this. Back in December we were approached by member Hannah Matin, who works in the office of Paul Farrelly MP, to suggest we hold such an event. In her role Hannah was able to secure us a room at the centre of Westminster, and to advise us on the best way to run the event.

So the room was booked, invitations sent out, but would anyone come?!

We shouldn’t have worried. As you know, over Easter we asked CHECT members to write to your MPs on our behalf, to share your experiences of Rb and to encourage them to attend the Drop-In.

We are so grateful to all of you who took the time to do this – it really paid off. Almost 40 MPs attended, including the Parliamentary Under Secretary of Health (Seema Kennedy), the Shadow Minister of Health (Sharon Hodgson), and the Shadow Minister for Disabled People (Marsha de Cordova). We also welcomed Jacob Rees Mogg to the event, much to the delight of teen CHECT member Christopher Payne who is a huge fan!

The four-hour event was an opportunity for MPs to meet some of our members face to face, and to hear about their experiences of Rb. So a huge thank you to everyone who gave up their time to come along and give their support:

• Hannah Matin
• Pippa, Glenn Branch and daughter Amber (age 2)
• Angharad Price
• Vicky Payne and son Christopher (age 14)
• Pippa Burrell and son Sebastian (age 3)
• Gemma Boggs (trustee)
• Alex Brebbia (trustee)
• Robert Downes (trustee)
• Amanda Moore (trustee)

In addition to chatting with CHECT members, MPs were encouraged to have their photo taken with our interactive #HaveYouCHECT banner to share on social media with suggested awareness messaging. Over a third of those who attended have done so, including Mr Mogg with his 277K Twitter followers!

We also talked to MPs about the importance of sharing information on signs and symptoms and referrals with key healthcare professionals in their constituencies, in particular GPs, health visitors and opticians. We have been in touch with everyone (both those who attended and those who were unable to attend) since the event, and a number have already confirmed they have disseminated our professional information accordingly.

And it doesn’t stop there. One MP has been in touch about issuing a press release, another has pledged to write about Rb in her column in a local paper, and another MP has offered to set up a meeting between CHECT and key health influencers in her local area.

Once again, thank you so much to all the wonderful CHECT members, without whom none of this would have happened: from Hannah’s original idea, to everyone who contacted their local MPs, to those who came along to support us. We will keep you posted on the outcomes!

Our thanks to Paul Farrelly MP and Jeremy Lefroy MP who sponsored the event on behalf of CHECT.

List of attendees (in no particular order):

Paul Farrelly (Newcastle-Under-Lyme)
Seema Kennedy (Parliamentary Under Secretary of State for Health)
Jack Brereton (Stoke on Trent)
Dr David Drew (Stroud)
Alison Thewliss (Glasgow Central)
Rafael Kochaj (Office of Bill Wiggin MP, North Herefordshire)
Stephen Lloyd (Eastbourne)
Stephen Pound (Ealing North)
Sharon Hodgson (Shadow Minister for Public Health, Washington and Sunderland West)
Eleanor Smith (Wolverhampton South West)
Peter Dowd (Bootle)
Jacob Rees Mogg (North East Somerset)
Paula Sheriff (Dewsbury)
Barry Gardiner (Brent North)
Wera Hobhouse (Bath)
Sir David Amess (Southend West)
Sir Christopher Chope (Christchurch)
Nic Dakin (Scunthorpe)
Mark Tami (Alyn and Deeside)
Mark Menzies (Fylde in Lancashire)
Marcus Jones (Nuneaton)
Mims Davies (Eastleigh)
Sir Desmond Swayne (New Forest West)
Preet Gill MP (Birmingham Edgebaston)
Heather Wheeler (South Derbyshire)
Damien Moore (Southport)
Mark Pritchard (The Wrekin)
Jo Stevens (Cardiff Central) couldn’t attend but asked her assistant to attend on her behalf
Mary Glindon (North Tyneside)
Andrew Gwynne (Denton & Reddish)
Mike Penning (Hemel Hempstead) – took families into Parliament
Chris Grayling (Epsom & Ewell)
Stuart McDonald (Cumbernauld, Kilsyth and Kirkintilloch East)
Rupa Huq (Ealing Central and Acton)
Mel Stride (Central Devon) – couldn’t attend but asked her assistant to attend on her behalf
Anna McMorrin (Cardiff North)
Marsha de Cordova (Shadow Minister for Disabled People)
John Baron (Basildon and Billericay)