Could you tell us about your current positions, both as a Consultant at Guys and St Thomas’ and as President of the RCPCH?
I trained as a general paediatrician, over a 15 year period, and then went on to become a Consultant in Paediatric Disability. I now work at Evelina London Children’s Hospital which is part of Guy’s and St Thomas’ NHS Foundation Trust. Although my main role is in paediatric disability, I have become increasingly interested in paediatric palliative care because I see growing numbers of children with life limiting conditions, many of whom are technology dependant.
The most important issue is to think about what aspects of their condition are having a negative impact on quality of life, and try to find ways of giving them or the family better control over their symptoms. As a doctor working in this field, I have had to face the fact – along with the families I look after – that there aren’t always the miracle cures we would like to see. But I can at least help children and parents make sense of the confusing array of information about just what is available.
As President, I am able to use the wealth of knowledge at the College to influence change in the NHS and in the wider community to improve child health across all four nations – for example, this could be working with clinicians and college staff members to audit services and set guidelines to improve children’s palliative care and other related services.
How did the appointment on the TfSL board come about?
Since I started in my President post, I have only been able to do a very limited amount of clinical work, so was missing my contact with the children’s palliative care world and network, and feeling a little sad that I wouldn’t be able to make a contribution in this area for a while. So when I heard that TfSL was advertising this Board post, looking for a doctor with experience in the field, I was really excited, as this will give me a different way to make a positive contribution. Timing couldn’t have been more perfect.
1. Have you worked with TfSL previously?
I had quite a lot of interaction with ACT, one of the two organisations that came together to form TfSL. I worked with them on some of the Department of Health ‘Paediatric Palliative Care £30 Million’ projects, including some national guidance on Emergency Care Plans, along with the Council for Disabled Children and British Academy of Childhood Disability. They were also very supportive of the palliative care service development work at Evelina London where I work.
Apart from that, both Barbara Gelb, the CEO of TfSL, and myself are members of the Children’s and Young People’s Health Outcome Forum, so I already knew before joining the Board that we had a shared vision and philosophy.
What experiences will you bring to TfSL?
As well as my clinical interest in the area, I have relevant experience through several of my other roles. Prior to taking up the Presidency, I was Director of Medical Education and Deputy Medical Director at Great Ormond Street Hospital for Children. As part of my role at Great Ormond Street, I pioneered the Snakes and Ladders programme, in which role play is used to highlight the ups and downs of the patient journey and teach staff to really see things through the eyes of their patients. We had a big focus in that programme about difficult decisions in end of life care. I have also held a very wide range of other management and policy roles, and have been a Trustee of 3 other children’s charities.
Do you have any areas of particular interest or focus within children’s palliative care that you will be looking to build on within TfSL?
Given my clinical background, it won’t come as a surprise that I am keen to ensure that all those working in the disability field have a full understanding of how principles of palliative care can really help their patients. For example, one of the really important things I learnt from palliative care colleagues was how to take a much more proactive approach to care – forewarning and preparing families for things that were very likely to happen in the course of their child’s illness. This might mean already having drugs in the house to treat seizures because we knew they were likely to start in the next few months, rather than taking the line of ‘not worrying’ parents before the event. In reality, it is much more worrying not to be fully prepared.
Working in the acute sector, I was interested to read about the two-year pilot scheme you have been involved with to move the focus from hospitals into the community. Does this relate to palliative care services for children too?
Our pilot is about trying to take a lot of services out of the hospital to make community hubs much more ‘the happening place to be’ when it comes to any aspect of children’s healthcare – including education programmes for parents, nurse-led clinics and children’s outpatients. The aim would be for each hub to work with a group of GP practices, so support the services they already provide for children.
In palliative care, we want to deliver as much care as possible in the home, and when that isn’t possible it is often the hospice that acts as that hub, providing all the other services and supports that are needed – right down to groups for siblings and so on. But where there isn’t a hospice providing that role, our community hubs might serve some of the same functions.
Are there any particular challenges or successes you can highlight in the provision of children’s palliative care?
My biggest worry at the moment is that there is still woefully inadequate funding to support children’s palliative care. This applies at all levels in the service – from specialist tertiary care through to community children’s nurses. In the time since I’ve been involved, I have seen community children’s nursing teams cut back so that many can no longer provide 24/7 end of life care at home. This is going backwards, not forwards.
The palliative care funding review was carried out to try and address these issues, and some pilots have been commissioned to help look at more appropriate funding models. I just hope these translate into action before people at the front line become disillusioned and services suffer.
What are your hopes for the future development of children’s palliative care services?
I hope to see properly funded services delivering care for children in the most appropriate place, with every professional across the network from GP to tertiary specialists, school staff, nurses and everyone who comes into contact with families trained to provide the best possible care and support. Different people in the system will need different kinds of training packages, but raising awareness is the first step to getting people to realise what they don’t know and so that they need extra training to plug these gaps.
I also want to see better transition to adult services, particularly for some of my patients who have complex physical health needs and learning disability, and who ‘fall off a cliff’ of care when they leave school because of lack of adult services.
To find out more about the work of Together for Short Lives, the UK’s leading children’s palliative care charity, visit the website.