MINISTER of State for Care, Gillian Keegan MP has met with Noah’s Ark Children’s Hospice and other healthcare leaders at 10 Downing Street to discuss a new study which has found that fewer than one in four (23%) paediatricians surveyed understand the criteria for referring children who are seriously unwell for local children’s hospice care.
The study, commissioned by the north London based hospice and authored by Dr Hannah Opstad, Senior Paediatric Registrar at Barnet Hospital, London, surveyed 30 healthcare professionals across four hospitals. 90% of those surveyed said that having read the referral criteria, they believe that they have cared for at least one child who was eligible for children’s hospice care but has not been referred for this specialist support.
The study demonstrates that a lack of understanding about what children’s palliative care is and who could benefit from it are key barriers to children gaining access to life-enhancing support.
The discussions at No.10, which were hosted by Special Adviser to the Prime Minister, Myles Stacey, centred on how charities such as Noah’s Ark can be integrated into the wider healthcare system to improve outcomes for children and families. Healthcare leaders in attendance included Sue Bottomley, the NHS’s National Head of Palliative and End of Life and Care, and Dr Sanjiv Sharma, Medical Director at Great Ormond Street Hospital.
The research has also revealed a recurring misconception that doctors are facing. Many respondents report that there is a societal stigma around hospice care acting as a barrier to children receiving support which will significantly improve the quality of their short lives, with one clinician asserting that ‘bringing up the subject with parents makes it sound like their child is imminently dying’.
Commenting on the discussions, Gillian Keegan MP, Minister of State for Care said:
“It was a real pleasure to hear about the wonderful work being done at Noah’s Ark Children’s Hospice today. It was lovely to meet with staff from the hospice and healthcare leaders, to discuss their work, including new research into the life-enhancing benefits of children’s hospice care. It is wonderful to see how much can be achieved when organisations with different perspectives work together for the benefit of patients and their families. I would like to thank them all for their tireless work to provide children and their families with support during the most difficult of times.”
Commenting on the research and aspirations for the children’s hospice sector, Sophie Andrews OBE, Chief Executive, Noah’s Ark Children’s Hospice said:
“There is a commonly held belief that children’s hospice care is primarily about supporting children at the end of their lives. Whilst this is an important part of what we do, it is key that we help children who are seriously unwell to enjoy a good quality of life, no matter how short their life might be. That means creating a safe place to play and forge invaluable peer networks, as well as supporting their families.
“I was saddened but unsurprised at the results of this study. We have a long way to go in raising awareness of the benefits of paediatric palliative care but I am hopeful that today’s meeting is a step forward.
“It was great that the Minister of State for Care was able to spend a considerable amount of time with us to understand the issues and support us in finding solutions.”
Commenting on the study, Andy, father from north London whose baby daughter Isabella is supported by Noah’s Ark (pictured), said:
“I was terrified when Isabella was referred for palliative care because, like so many, I thought it was only for end-of-life. But the team at the hospice have enabled her to do things we never expected, including responding so brilliantly to music therapy at The Ark.
“Noah’s Ark has enabled us to have fun as a family, which can be hard when you are managing complex conditions. I hope that raising awareness of what palliative care actually means amongst doctors and nurses will lead to many more families like ours benefitting from this incredible support.”