The first reading of the new Down Syndrome Bill
Absolutely delighted to announce the launch of the Down Syndrome Bill. Hear more from our trustees.
Dr Liam Fox MP introduces Down Syndrome Bill to Improve Life Outcomes
A Down Syndrome Bill is to be introduced to Westminster by Dr Liam Fox MP in the next Parliamentary session later this year. If successful, it will lead to the establishment of a Down Syndrome Act and a national strategy to improve provision and outcomes for all those living with Down syndrome in the UK. The Autism Act which became law in 2009 preceded the establishment of the national strategy to help meet the needs of adults with autistic spectrum conditions in England. The Down Syndrome Act will go further, identifying needs in all areas, for all individuals with Down syndrome across the whole of the UK. This will encompass, amongst other areas, maternity care, education, health, social care and employment.
The National Down Syndrome Policy Group, in coalition with the All-Party Parliamentary Group for Down Syndrome, has been lobbying for the long overdue Down Syndrome Act and have released a film featuring trustees who have Down syndrome, highlighting some of the areas where they hope to see positive change in the future.
Dr Liam Fox MP, the Down Syndrome Bill Sponsor said,
“I am thrilled to bring forward a Bill to deal with the issues faced by those with Down syndrome. The full title is ‘A Bill to make provision about meeting the needs of persons with Down syndrome; to place a duty on local authorities to assess the likely social care needs of persons with Down syndrome and plan provision accordingly; and for connected purposes’.”
“My aim is to deal with three main areas. The first is to de-stigmatise Down syndrome and to re-educate both the public and professionals about the advances, including in life expectancy, that have occurred in recent decades. The second is to ensure that current provision of services is improved, whether provided by health, education or local services, by ensuring that providers give due consideration to those with Down syndrome when designing service provision. The third is to look ahead and deal with future issues, such as long-term care, in an era where, for the first time, many of those with Down syndrome will outlive their parents. By giving due thought to the issues today we can prevent avoidable human tragedies in the future.”
Actor and Trustee for the National Down Syndrome Policy Group (NDSPG) George Webster said:
“A Down Syndrome Act. Why didn’t we think of this before?!”
“We are all very excited that Dr Liam Fox is sponsoring a Bill with the aim of improving the lives of people living with Down syndrome.”
“I would like to see the Bill becoming law, then I think everyone like me with Down Syndrome will get better healthcare, more access to services and be more included in society. It is possible. It happens for some now, but it shouldn’t be a lottery. “
Peter Brackett, Chair of the NDSPG said:
“For too long the voice of the Down syndrome community has not been heard. We are delighted that the Down Syndrome Bill will enable engagement to secure and safeguard the rights and ambitions of the community across all aspects of society.”
“Having lobbied hard for this opportunity, our group will be fully behind Dr Liam Fox and the Down Syndrome Bill on its journey through Parliament, in line with our aim of raising the profile of issues affecting people with Down syndrome, their families and carers.”
Line of Duty star with Down syndrome backs launch of new Down syndrome All-Party Parliamentary Group at Westminster
BBC’s Line of Duty star Tommy Jessop is backing the launch of the new All-Party Parliamentary Group (APPG) on Down Syndrome, which will be launched at an inaugural meeting at Westminster tomorrow.
A number of Down syndrome advocacy and support groups along with a cross-party group of MPs, led by SNP MP Dr Lisa Cameron and Labour MP Matt Western, have come together to launch the new All-Party Parliamentary Group on Down Syndrome.
The new group has been launched to raise issues affecting people with Down syndrome and their families and carers, as well as to promote equality and respect at all stages of life, to campaign for equal access and support in all areas of life and to highlight the innate worth of people with Down syndrome and the contribution they make.
The first meeting will include a speech by advocates with Down syndrome welcoming the establishment of the group and highlighting the issues that the group will be seeking positive change on. These issues range from maternity care for parents expecting a baby with Down syndrome to the matter of premature death for people living with Down syndrome.
APPG members will be supported by the newly-formed National Down Syndrome Policy Group in the Secretariat role. The policy group is comprised of interest groups and individuals who have Down syndrome, therefore linking the parliamentary group to others with knowledge of the issues important to the wider Down syndrome community.
Line of Duty actor Tommy Jessop said:
“I welcome the new All-Party Parliamentary Group for Down Syndrome. I hope this will raise awareness of people living with Down syndrome and who we really are so that we really do have a voice to speak up for ourselves and other people”.
“I want to see people with Down syndrome treated equally with others before and after they are born. We are the only group of people in the UK where people try to end our lives before we are born just because we have Down syndrome. This is not fair. It scars our lives and causes mental health problems”.
Self-advocate Heidi Crowter, from Coventry, said:
“We hope that the members of the All-Party Group can use their powers and their energy to help make positive change for people like me and my husband James who has Down syndrome”.
Conservative MP Elliot Coburn, the group co-chair, said:
“I was delighted to be asked to join the new All-Party Parliamentary Group on Down Syndrome, and to become a Vice Chair. People with Down Syndrome deserve a strong voice in Parliament to stand up for them and their families, and to press for greater support to help with the child’s development and for the family”.
Government Minister Caroline Dinenage said:
“I’m so delighted to support the All-Party Parliamentary Group for Down Syndrome. I am all in favour of action to ensure people with Down syndrome lead healthy, active and independent lives – that their talents are recognised and their voices heard”.
Nicola Enoch from the National Down Syndrome Policy Group said:
“We are striving to ensure that people with Down syndrome will have the opportunity to have their voices heard at Parliament. For too long their views have not been canvassed or heard; the APPG will provide a public platform for people with Down syndrome to speak”.
- For more information, see the Down Syndrome Policy Group website www.dspg.uk or email email@example.com
- For interviews, contact Lynn Murray on 0784 0966 736 or email firstname.lastname@example.org
- People with Down syndrome who are trustees of the Down Syndrome Policy Group introduce themselves: https://www.youtube.com/watch?v=-zL0naw24a0&ab_channel=DownSyndromePolicyGroup
- Sharing the News Report 2019 – The maternity experience of parents of a baby with Down syndrome https://downsyndromeuk.co.uk/flipbook.html
- Birth incidence, deaths and hospitalisations of children and young people with Down syndrome https://bmjopen.bmj.com/content/10/4/e033770
- Life expectancy and causes of death of people living with Down syndrome http://www.sldo.ac.uk/our-research/life-expectancy-and-mortality/life-expectancy-and-causes-of-death-of-people-with-down-syndrome/
- Down syndrome abortion figures are expected to increase as NIPT is rolled out across NHS hospitals. The number of babies born with Down’s syndrome has dropped by 30% in NHS hospitals that have introduced the new test. https://www.thetimes.co.uk/article/new-test-brings-big-fall-in-birth-downs-babies-c89krkjcx