Importance of the Advisory Group
The heart and soul of the NDSPG is the Advisory Group. From the outset, it has been the aim of the NDSPG to gather the voices of people with Down syndrome, and amplify these voices to reach the highest levels of government and influence policy.
Founding member Fionn Crombie-Angus described his involvement from the beginning:
“I can assure you, our voices have been kept front and centre, and the policy group’s process and flow has been frequently adapted to suit all members. It was my suggestion that our group’s slogan should be Changing the Narrative because I love stories, and the life stories of too many people with Down syndrome are poorly written, or dull, or tragic. Aiming for greater inclusivity, we five recently formed an advisory group, inviting adults with Down syndrome from across the UK to tell us what is good and what is challenging about their lives.”
These five founding members – Fionn Crombie-Angus, Heidi Crowter, James Carter, Bethany Asher, and George Webster – have been passionate advocates for inclusion for people with Down syndrome, and contributed their energy and many talents to the launch of the Advisory Group.
On 10th January 2022, a dedicated website was set up for the Advisory Group, and word was spread across the UK that the group was recruiting interested adults who have Down syndrome. To date, a total of 120 adults have become members of the Advisory Group, with a core group of around 60 members who regularly participate in meetings. The group continues to grow.
What does the Advisory Group do?
The Advisory Group is comprised of lived experience experts across the nation, each of whom have Down syndrome. In addition to engaging with the UK government, the Advisory Group raises the profile of Down syndrome issues nationwide.
The group hosts its own meetings and sets their own agendas. The views and feedback from Advisory Group members are channelled directly to MPs and policy makers, via the All-Party Parliamentary Group on Down Syndrome (APPGDS), enabling individuals with Down syndrome to advocate for their own priorities and affect the development of policy that concerns them. It is a unique and effective arrangement that ensures that the input of people with Down syndrome has a much higher likelihood of being listened to and given weight in the UK government.
Meetings are held monthly by the Advisory Group, and participants can discuss topics which affect their quality of life, such as employment, housing, support services, education, healthcare, and maternity.
A facilitator team leads the meetings, which follow a structured agenda, and updates and news are shared. Advisory Group members are welcome to bring someone to help them communicate if they prefer, however this person should not express their own opinions.
NDSPG aims to deepen group members understanding of issues that affect them, and provide training that encourages them to develop their communication skills, further promoting the voices of the DS community in all areas that affect them. This personal development opportunity includes practicing the following skills: Planning and organising a meeting; Facilitation skills; Meeting notes/capturing of key messages; Opportunity to develop public speaking; Time management; Increased confidence; Meeting etiquette; Boundaries; Transferable skills for work places; Networking with peers; Building community connections.
Notable achievements so far
Since it was set up just a few years ago, the Advisory Group has taken some momentous steps together with the NDSPG and APPGDS, including:
- Collaborating with the APPGDS to make sure MPs are sensitised to the lived experience of people with Down syndrome
- Advocating for the Down Syndrome Bill and supporting it all the way to Royal Assent as the Down Syndrome Act
- Gathering and presenting lived experience material to inform the UK government’s development of guidance on the Down Syndrome Act
- Reaching out to individual MPs after the new government was formed to invite new MPs to join the APPGDS
- Engaging with Integrated Care Boards, helping local authorities become more confident in communicating effectively with the DS community
- Speaking out about current concerns such as the Assisted Dying Bill
Celebrating the achievements of Advisory Group Members
The talents of Advisory Group members shine, both within the group and in many other areas of their lives. We are conscious that Advisory Group members are role models to many others in the Down syndrome community, and we proudly highlight these achievements. Advisory Group members have been inspirational in their fight to develop their talents and achieve their hopes and aspirations, encouraging their peers to speak up for their needs and rights.
Just a few of these achievements include:
- On 7th December 2022, founding officer Heidi Crowter was revealed as one of the BBC’s 100 inspiring and influential women from around the world
- More recently, Fionn was appointed as director at Down Syndrome Ireland, the first such appointee with Down syndrome in its 52 year history
- Advisory Group Leader Ed Daly was announced the Winner of the BBC Make a Difference Award, for his conservation work
NDSPG Ambassadors
A separate, complementary group also brings issues related to Down syndrome into the public eye. We have a number of high-profile public Ambassadors, who often speak publicly on behalf of the NDSPG. Some notable Ambassadors are Tommy Jessop, an actor well-known for his role in ‘Line of Duty’; Florence Garrett, female team captain of Down Syndrome Swimming GB; Heidi Thomas, acclaimed screenwriter of many classic TV shows, including the long-running ‘Call the Midwife’; and Stephen McGann, one of the principal actors in ‘Call the Midwife’.
The expertise, skills and input of the Advisory Group contributed powerfully to history in the making. See our upcoming blog for more of the story: how the Down Syndrome Act rapidly evolved from inspiration to legal reality.
You can donate to the work of the NDSPG here: https://donate.justgiving.com/charity/nd-spg/donation-amount
Your contributions are very welcome!
