Alison Thewliss, MP for Glasgow Central, has committed to support the charity Together for Short Lives’ call to provide better support for children and young people who need palliative care and their families.
The charity, which speaks out for the 49,000 children and young people in the UK who are expected to have short lives, held a special Westminster reception on Tuesday (7 February) to highlight the devastating impact that life-limiting and life-threatening conditions can have on children and their families. MPs heard about the action that Together for Short Lives would like the Chancellor of the Exchequer to take to help these vulnerable families when he delivers his Budget on 8 March.
During the reception Ms Thewliss heard from Rachel Thompson, the mother of nine year old Frank who was diagnosed with a rare life-limiting condition when he was just four. Rachel told parliamentarians about the pressures of coordinating Frank’s 24/7 care and the support she and her family receive from their local children’s palliative care services.
The reception also saw the launch of the new All-Party Parliamentary Group for Children Who Need Palliative Care. The group will provide an important forum for MPs and Peers to hear about the issues facing these seriously ill children – and what action they can take in Parliament to help.
Children with life-limiting conditions require a wide range of professionals working together across different health and care services to support them. Unfortunately, there is a postcode lottery of support for children and their families as many cannot access the care that they need. This is because it is not available in their area or there are not enough professionals with the right skills and experience to care for them.
Alison Thewliss MP said
“I really appreciated having the opportunity to hear Frank’s story and to learn about the wonderful support he receives from a range of services, including his local children’s hospice.
“It was evident at the reception that there is much more to do to help families overcome the serious challenges they face on a day to day basis. I support the charity’s call to make the mobility component of the Disability Living Allowance available to children under three who are dependent on heavy and bulky life support equipment. Currently this benefit is only available to children aged three or over. I look forward to working with Together for Short Lives in Parliament to support children with life-limiting and life-threatening conditions and their families.”
You can find out more about Together for Short Lives’ work to transform the lives of children with life-limiting conditions at www.togetherforshortlives.org.uk or join the conversation using #forthe49000.