Parliamentarians shine a light on the 49,000

Too many children and young people with life-limiting conditions and their families struggle to get the care and support they need. That’s why the UK children’s palliative care charity, Together for Short Lives, has called on the Chancellor to include vital spending commitments in his March Budget to help families who are just about managing or near breaking point. 

TFSL Westminster March 17 Event 4Together for Short Lives’ call came at the charity’s Westminster Reception hosted by Stuart Andrew MP (7 February 2017). Parents caring for seriously ill children, young people with life-limiting conditions and children’s palliative care charities and professionals were joined by over 50 MPs and Peers.  

Parent, Rachel Thompson shared a personal account of coming to terms with the news of her son Frank’s diagnosis when he was four year’s old. After a healthy start in life Frank was diagnosed was Late Infantile Batten Disease – a rare, incurable, neurodegenerative condition – with a life expectancy of only 6-12 years of age. Batten disease has resulted in Frank losing his mobility, speech, sight and his ability to swallow and eat safely. 

TFSL Westminster March 17 Event 2Together for Short Lives’ Westminster reception highlighted the reality of caring for a child with a life-limiting condition, shared the challenges families face in getting support and set out what needs to change. This included a visual installation showing the impact the disability living allowance baby mobility benefit bar, which precludes families with seriously ill babies and infants aged 0-3 from claiming the benefit that would help them access an adapted car. The installation showed just how much essential equipment families need to carry on every journey with their child – including mobility equipment, medication and breathing, feeding and swallowing equipment. 

Parliamentary Under-Secretary of State for Community Health and Care David Mowat MP addressed the event, sharing his reflections on what needs to put in place to improve children's palliative care. He was keen to respond and follow up on Together for Short Lives' Seven Budget Asks outlined by its CEO, Barbara Gelb OBE - including the shortfall in the Children's Hospice Grant.   

TFSL Westminster March 17 Event 3The Minister said that good end of life care for children was a priority – stressing the importance of families having open conversations with professionals and being offered real choice in where end of life care is delivered. He added that good end of life care is a hallmark of civilized society – especially so for children, and that's why we must step up to the mark. The Minister noted that there is still a postcode lottery of care for these children, adding that there's an important opportunity for the Department of Health and NHS England to work together to address this by making sure that the new NICE guideline on end of life care for children is implemented to full effect.  

The event also marked an important milestone for children’s palliative care, with the launch of the first dedicated All Party Parliamentary Group (APPG) for children who need palliative care. Together for Short Lives asked Parliamentarians to shine a light on the 49,000, join this APPG and represent their needs to government. 

Launching the new APPG, Stuart Andrew MP for Pudsey, Horsforth and Aireborough said:  

“Having worked in two children’s hospice services I have seen first-hand what a vital role they play in supporting children and families – without this many families would be at breaking point. Sadly, we have a long way to go to ensure that each and every child, young person and family get the care they need. That’s why I’m passionate about speaking up for the 49,000 through setting up and chairing the new All Party Parliamentary Group for Children Who Need Palliative Care.”  
“Its launch today is significant as these children and young people are often treated as mini-adults – their small voice and unique needs get lost in the adult palliative care policy discussion. It will help to amplify the voices of the 49,000 and their families, and bring into focus what must change.” 

Addressing the event Barbara Gelb OBE, CEO for Together for Short Lives set out the charity’s call on the Chancellor and said:  

“As the voice for the 49,000 Together for Short Lives is asking the Chancellor, ahead of his budget, to help UK’s most disadvantaged children and young people. We are heading for a children’s palliative care crisis – we urgently need timely investment in the services and workforce that deliver vital care to families. And a few simple changes could make a lifetime of difference, like lifting the unfair baby benefit mobility bar for the 0-3s so all families can safely transport their child and the life-sustaining equipment they depend on.” 
“It is vital that the Prime Minister’s vision for a shared society does not exclude these children and young people – there is a chance to right the wrongs and ignorance of the past and seek to secure a quality of life and a quality of end of life care for these children.” 

You can read Together for Short Lives’ Budget Representation to the Treasury 

Find out how you can take part in our campaign #forthe49000    

Read Barbara Gelb OBE, CEO for Together for Short Lives' Blog   

Read Parent Rachel Thompson's blog  

Read Stuart Andrew MP's blog 

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