APPG All Party Parliamentary Group
What is an APPG?
As well as taking part in formal parliamentary business, MPs are active in other areas such as within their own political parties and constituencies. They may also take part in informal work at Westminster, such as working with All-Party Parliamentary Groups (APPGs). APPGs are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many involve individuals and organisations from outside Parliament in their administration and activities.
Minutes APPG 22q11 Syndrome Meeting 18th July 2023
APPG Annual General Meeting 9th May 2023
Good to have David Duguid MP back as Chair of the 22q11 Syndromes All Party Parliamentary Group. An AGM took place yesterday where we were able to discuss 22q11 issues with members of the House of Commons and House of Lords. Minutes will be available shortly. Carla and Mandy both updated MP's and discussed current topics of interest.
AGM of 22q11 Syndromes All Party Parliamentary Group
Wednesday 11th May, 2022 Meeting room 3 Westminster Hall
The Annual General Meeting of the 22q11 Syndromes APPG was held.
Please see below the minutes of the meeting;
22q APPG Minutes 11th May 2022 Minutes
As you can see there were a wide range of issues discussed and Suzanne Webb MP, Chair agreed to take forward a number of issues over the coming months.
Martin Kennedy, Trustee spoke about Apprenticeships and how he hopes they can become more available to those affected by disability. Here are the details of what he said :
My name is Martin Kennedy and I am a Trustee of the Charity “Max Appeal” that supports People touched by the Genetic condition 22q11. The condition impacts approximately 1 in 1500 people and is second only to Downes Syndrome in prevalence. Last week I had the pleasure of attending the 22q11 APPG chaired by Suzanne Webb, MP for Stourbridge, at which I delivered a speech around the condition, its impact, and potential opportunities around apprenticeships. I have been requested to contact you direct to hopefully open the following conversation.
Many of our group are unemployed, this is not something they like, enjoy, or want and I feel there is a real option for Apprenticeships to be a pathway to success for some our group through the incentivisation of employers utilising monies generated by the Apprenticeship Levy. Many employers fail to claim their levy allowance and these surplus funds are redirected to support smaller employers. There is a real opportunity for these surplus funds to also be utilised to encourage employers, through incentive payments, to employ disadvantaged people (those with EHCP plans?) and for them to gain real skills through an apprenticeship, and while doing so they are contributing to the economy rather than being a cost potentially leading to longer-term employment. The benefits are tangible with the group contributing to society rather than being a cost.
The vocational, rather than Academic, approach to training through Apprenticeships is well suited to our group who can excel in practical tasks, but currently routes to employment are limited by employers’ misconceptions and their perceived difficulties in employing people with disabilities. These are often incorrect, and a financial incentive would encourage employers to change their views.
I currently work in local authority and am an ex-apprentice engineer who has spent most of his career in industry, some of which was spent developing and managing Apprenticeship Schemes. In 2015 I was awarded the National Apprenticeship Service “Apprentice Champion” of Yorkshire and Humberside award, given in recognition of my work supporting Apprenticeships in the region and I truly believe the structured pathway an Apprenticeship offers could see our group flourish given the opportunity.
I hope my suggestion gives food for thought and it can open a conversation up regarding the employability of people with disabilities through the Apprenticeship pathway.
It would be good to be given the opportunity to develop this conversation through “meeting or correspondence” so please feel free to contact me on this e mail address or the number below.
Thank you,
Martin Kennedy
Max Appeal Trustee
Dr Samantha Leonard, Senior Medical Director, at Natera International, joined the meeting remotely and spoke about the possibilities of prenatal testing for 22q11 Deletion Syndrome.
She shared some research on incidence of 22q11 DS.
Dr Imke Meyer Parsonson, Consultant Paediatrician at Great Ormond Street Hospital shared details about the clinic and the challenges they face when providing a service to families affected by 22q11 DS.
Mandy Sanderson, from NHS England and parent spoke about Max Appeal’s application to the New Born Screening Committee and how issues can be moved forward with the view to including 22q11 DS in the programme.
We are grateful to the committed group of MP’s and Lords highlighting issues involving 22q11 DS and we look forward to hearing of the opportunities open to them to raise the issues over the coming Parliament.
Some photos from the day
Dr Imke Meyer - Parsonson, Mandy Sanderson, Dr Samantha Callan, parliamentary Advisor to Lord Farmer, David Duguid MP, Martin Kennedy
Julie Wootton, Martin Kennedy, Mandy Sanderson, Claire Hennessey
Suzanne Webb MP, Julie Wootton
Mandy Sanderson, Dr Samantha Callan, parliamentary Advisor to Lord Farmer
Claire Hennessey, Dr Imke Meyer - Parsonson, Mandy Sanderson
Martin Kennedy, David Duguid MP, Julie Wootton, Marcus Boyle, Claire Hennessey, Dr Imke Meyer - Parsonson, Mandy Sanderson
Message from David Duguid January 2020
Good afternoon everyone. I hope everyone had a great festive period and I would like to wish you all the very best for 2020.
As many of you will know, in the previous Parliamentary session, I was Chair of the House of Commons All Party Parliamentary Group for 22q/DiGeorge Syndrome.
As we begin a new session, all APPGs have to be re-established. I very much hope to be re-elected as Chair but for the group to become established formally, we need representation from across parties and ideally representing different parts of the UK.
Therefore, can I ask you to consider writing to your own local MP encouraging them to join.
They can contact me at david.duguid.mp@parliament.uk and the inaugural meeting is 5pm Wed 15 January.
Many thanks
Sincerely
David Duguid MP, Banff and Buchan
Stop press:
If your MP requires some basic info, you may wish to include the attached YouTube video of me talking about 22q in the House of Commons.
Westminster Hall debate 4th July, 2018
David Duguid MP attended a Westminster Hall debate, secured by the Royal College of Speech and Language Therapists to discuss the findings of the Bercow: Ten Years On Report. Although England-focussed, much of the material is relevant across the UK.
David Duguid MP delivered a speech on the importance of accessing appropriate speech and language therapy for children affected by 22q11 and how outcomes can be effected.
APPG Meeting 26th June, 2018
David Duguid MP invited Steve Brine MP, Parliamentary Under Secretary of State for Public Health and Primary Care in June 2017 to attend the APPG meeting and find out more about 22q11 syndrome.
The Minister who's brief includes health protection and improvement, international health policy, cancer and new models of care, joined the meeting along with Max Appeal representatives, Gillian Cassidy, 22q Northern Ireland and clinicians from the specialist 22q11 clinic at Great Ormond Street Hospital and The Maudsley Hospital, London.
Attendees were able to brief the Minister on many of the challenges facing families affected by 22q11 Syndrome, in health services, education, transition to adult services and access to adult services. A discussion took place about the new born screening programme.
David Duguid MP Private Members Bill for 22q11 Syndrome
On the 5th June, 2018 Max Appeal representatives were delighted to hear David Duguid MP and Chair of the 22q11 APPG raise a Private Members Bill in the House of Commons. David's Bill would require the Secretary of State to conduct a review into Di George (22q11 deletion) syndrome; to require the National Health Service to publish a strategy after the review is complete; and for connected purposes.
See the full text of David Duguid MP's speech.
APPG Re-Registration 2017
On Wednesday 13th September, Julie & Paul Wootton, Claire Hennessey, Mark Tripp and Julie Jones went to the House of Commons to re-register our APPG for 22q11. We had until 15th September to re-register. Our Chairman MP Jack Lopresti stood down and new MP David Duguid has taken the Chairman position. New members Heidi Allen MP will act as Secretary, Melanie Onn MP - Vice Chair, and Jack Lopresti as Vice Chair. All documents were signed and our re-registration was sent off and accepted. Attached are the draft minutes of the meeting. More information to follow....
The chair and registered contact for the 22q11 syndrome APPG is David Duguid MP, the Scottish Conservative member for Banff and Buchan.
If any Lords or MPs are interested in joining the group they should contact;
email: david.duguid.mp@parliament.uk.
We are very grateful to David and his office because they have been tremendously motivated to continue the work of the APPG.
@22qAPPG - follow us on Twitter
The aim of the APPG is o increase recognition and understanding of the Syndrome across policy makers and the medical profession. Eventually aiming for, once diagnosed, life-long health strategy for suffers.
Please note this is not an official feed of the house of commons. It has not been approved by either House or its committees. All-Party Parliamentary groups are informal groups of Members from both Houses with a common interest in particular issues. The views expressed in Tweets are those of the group.
Records of the APPG meetings and events
Max Appeal is acting as the secretariat to the APPG and is funding the group. Meetings and events are listed wit the most recent first. If you have any queries about the APPG then please do contact us.
NB Please note the following required disclaimers:
Publications on this website (unless otherwise specifically stated) are not official publications of the House of Commons or the House of Lords. They have not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these reports are those of the group.
This is not an official website of the House of Commons or the House of Lords. It has not been approved by either House or its committees. All-Party Parliamentary Groups are informal groups of Members of both Houses with a common interest in particular issues. The views expressed in these web pages are those of the group.
AGM 24th October 2016
We have seen our members organising lots of good things to promote 22q11 Syndrome and here is another opportunity to raise awareness of 22q11 Deletion Syndrome.
Get in touch with your MP. Tell them about the condition and how it affects your family. We have been really fortunate (through loads of hard work as well) to have our own APPG.
In October 2016 we held the second AGM and have at least another year to work on MPs and tell them as much as possible about 22q11.
We produced a really good report, it went down very well with the MPs. BUT the big 'take home message' from the meeting was to get families to contact their MP.
Please take the time to send the link to your MP...there are some hard facts in the report that just shows how tough a time families have when supporting their child, young person or adult with 22q11 Syndrome.
We need to make sure MPs know the facts as well. Perhaps there is something in the report which you can relate to with your own personal experiences. Hard copies of the APPG report are available to order. Do whack it over to your MP using the link below or the @find your MP link in previous articles below. We want to get it to as many as possible, so it is free to order.
We all know about 22q, but there are LOADS of people who don't, (bless 'em!) YET.
Meeting 10th May 2016
Dr Debbie Sell, from the Great Ormond Street Hospital specialist 22q clinic, spoke about the general profile of people with 22q11 syndrome.
Martin Kennedy spoke about his experience as an apprenticeship ambassador and how apprenticeships would be of benefit to people with 22q 11 syndrome.
Meeting 2nd February 2016
Dr Clodagh Murphy, consultant psychiatrist from the Maudsley Hospital, which runs the UKs only adult specialist 22q11DS clinic, and GOS informed MPs about the psychiatric disorders associated with 22q11DS and her extensive experience with the condition.
Max Appeal also circulated its finding of mental health services as revealed by its brief questionnaire.
22q11 Experience of Mental Health Services download
Meeting 8th December 2015
MPs were delighted to hear from Professor Peter Scambler, molecular geneticist at Institute of Child Health in London, about his analysis of recent findings from an Italian study concerning the prevalence of 22q11.2 deletions and duplications in around 9,000 pregnancies.
The upshot of this study, which is borne out by Professor Scambler's analysis, is that 22q11DS is massively undiagnosed within the population.
The results of Max Appeal's questionnaire into examination results and employment successes for adults with the condition was also met with interest. The questionnaire shows that people with 22q11DS appear to enjoy much better than anticipated academic achievements but their employment success is disproportionately lower and this is something that warrants further investigation.
The Frequency of the 22q11.2 Deletion and Duplication and its Implications
AGM - 15th June 2015
This was the first meeting of the group since the general election in May. Fortunately most of the APPG members survived and we were pleased to see so many new members keen to join the group.
The new APPG register was published in September and the 22q11 syndrome entry can be found on page 150.
APPG AGM & draft Minutes 23rd June 2015
OFFICIAL APPG LAUNCH - 10th March 2015
There was a huge amount of preparation for this meeting both for Jack Lopresti MP's office and for Max Appeal.
It was an exciting opportunity to meet with MPs and other invited guests who were both family members and professionals in the field of 22q11DS.
Ivy Mitchell certainly stole the show!
INAUGURAL MEETING - 2nd December 2014
from left to right: Paul Wootton (Max Appeal treasurer), Clodagh Murphy (psychiatrist, GOS and Maudsley Hospitals), Gillian Cassidy (22qNI), Julie Wootton (Max Appeal), Jack Lopresti MP, Carla Attwood (Max Appeal), Claire Hennessey (Max Appeal),Keith Markham (22Crew), Marcus Jones MP and Dr Alex Habel (medical expert).
Since the initial meeting with Jack Lopresti MP there has been lots of work going on behind the scenes to draft support from the required cohort of MPs from all of the parties, that is 20 with 10 from the party in power and 10 opposition parties.
Everyone was delighted that the APPG was now formally in existence and a further meeting in January is planned with an official launch at the end of February 2015.
INITIAL MEETING - 19th August 2014
This meeting was to establish the basis of the APPG and set the goals in place for forming the APPG.
Carla contacted her MP Jack Lopresti and he was very keen to form the Group and so we met with him and Selina, his Office Manager, in Bristol.