Why the spotlight must stay on seriously ill children

Dr Sarah Mitchell, GP in Birmingham who has written a local palliative care strategy for the city, reflects on her appearance on BBC 5 Live Investigates (12 November 2017) to talk about Together for Short Lives’ ‘Commissioning 2017’ report. She also emphasises why it is crucial that NHS organisations across England prioritise planning and funding children’s palliative care in their local strategies.

Thank you Together for Short Lives for inviting me to be part of the BBC Radio 5 Live Investigates programme. The family stories that we heard, from Hayley and Holly, Charlotte and Ruby, and Steph and Daisy, along with the findings of the Together for Short Lives 2017 report into commissioning children’s palliative care services across England, once again highlight the urgent need to consider how palliative care can be improved for every child who needs it.

It was my very first national media experience, and what a strange one it was! Hidden away in a tiny blue sound-proofed studio at the BBC in Birmingham’s glamorous Mailbox, I was desperate to represent my colleagues and all of the families I have got to know through my research as well as I could.

So when the questions started, and it was clear that I was the commissioning representative for the programme, naturally I felt a little anxious. Since the programme was broadcast, I’ve had a chance to reflect upon the things that I have learnt about children’s palliative care over the past five years, and all of the things I would say if there was another interview:

  1. Palliative care should be delivered to all people who need it, at any time, with any condition and in all care settings.
  2. As highlighted in the programme, we cannot assume an understanding of the word “palliative”. It is a broad philosophy of care and it is everybody’s business, whether we are a GP, specialist palliative care paediatrician, A&E nurse, or a healthcare commissioner. The specialty of palliative care cannot do the job alone; there is work to be done to empower the wider healthcare system and society in order that they can also be involved in delivering crucial palliative care to children and families.
  3. Not all children and families who could benefit from palliative care ever get to being under the care of specialist palliative care services. “Palliative care” has negative connotations and is frequently an unpalatable concept for families and clinicians alike who may be reluctant to accept it. Some do not meet the referral criteria for specialist services. There is a need to consider how all children with life-limiting and life-threatening conditions can experience the best possible palliative care whether this is provided by specialist services or not.
  4. Not only are numbers rising, but the conditions with which children are living are becoming more complex, with the possibility of a deterioration and dying a daily occurrence for many. Children live with conditions that are particular to only them; their care must be individualised and tailor made. Commissioners do not automatically realise the scale of the problem, and translating this complexity into the contracts, numbers and service specifications that commissioners need is a difficult task.
  5. Policy documents and NICE Guidelines are important; they state clearly what we should do but not how this should be done. We need to understand more about how policy can be put into practice and this should be a clear focus of future work, including vital research.
  6. Just as the conditions with which children are living are highly complex, the systems through which services are commissioned are also highly complex. There is opportunity for commissioners to work across the system through the formation of the Sustainability and Transformation Partnerships (STPs), but this absolutely depends on children’s palliative care being recognised consistently as a priority, followed by a commitment from commissioners to develop strategies that are realistic, that can be supported by measurable outcomes and that will lead to improvements in care for families.   

I was struck by how quickly, at the end of the programme, we moved on to hear about the latest sporting headlines, and we were all left to get on with our day. A few tweets, a bit of thinking, and there is a risk that nothing will really change. We must continue the work to investigate and highlight this important issue, and work together to find innovative solutions for the benefit of children and families.

I support the call from Together for Short Lives for us all, whether we are a member of the public, a family member, professional, commissioner, minister or parliamentarian, to take action to improve 24/7 palliative care provision for seriously ill children. Visit www.togetherforshortlives.org.uk/commissioning2017 to find out how you can help today.

Dr Sarah Mitchell is a practicing GP at St Helier's Medical Practice, Birmingham. She is also NIHR Doctoral Research Fellow at Warwick Medical School and Clinical Director for Generalist Palliative and End of Life Care for the West Midlands Clinical Networks and Senate, NHS England. Formerly, she was Clinical Lead for Palliative Care for NHS Birmingham Cross City CCG and NHS Birmingham South and Central CCG. She is a wife and mum of three children.

@MacGPSarah

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