An All-Party Parliamentary Group inspired by Harry’s Pledge has called for support for parent carers to be put in place without waiting for crisis point.
The All-Party Parliamentary Group on Emotional Support for Parent Carers of Seriously Ill and Disabled Children was set up earlier this year in part due to the success of the Pledge.
At its second meeting, parent carers had the opportunity to share their experience of the lack of emotional support available when they had the news that their child might not have a long life.
Group members were joined by expert speakers who had also been invited to discuss the topic.
Lynn Stubbs, Chief People and Governance Officer at Amplius – one of the founding members of Harry’s Pledge, said: “I think it was a fantastic session with several MPs attending.
“They were really interested, listening, asking us questions and, most importantly, committed to working with us under the banner of Harry’s Pledge.”
Hayley Charlesworth, whose son Harry inspired the Pledge along with the Harry’s Pals charity, also spoke at the meeting.
She added: “I think it went really well. We had a great mixture of people who attended.
“I really hope that we’ve inspired the powers that be to get this conversation on the agenda so we can make a big difference to parent carers across the country and ultimately save lives.”
The meeting was attended by various politicians, including Matt Bishop, Labour MP for Forest of Dean, John McDonnell, Labour MP for Hayes and Harlington, and Baroness Sue Grey.
Doctor Siobhan O’Dwyer, Associate Professor of Social Care at the University of Birmingham, who leads research on suicide, homicide, and self-harm in unpaid carers, spoke passionately about the findings of her recently published report on preventing suicide among parent carers.
She was joined by Anna Walker, a parent carer who spoke about her lived experiences. Her daughter was born with a rare genetic condition over 30 years ago. She now lives in supported care and requires round-the-clock care.
Anna became involved in the research because it was a topic that she felt professionals skirted around and parents were scared to share.
She said: “I thought the research was really brave.
“This needs to be an open and shared conversation. Support needs to be put in place without waiting for parents to fall into crisis.”
Ceri Menai-Davis, founder of It’s Never You – a charity that supports the families of seriously ill children – also spoke about his experiences after losing his son and the families he speaks to through his charity about the lack of emotional support available.
