Today I am going to set out four points and with them four challenges – by addressing each I think we can help to improve the quality of care at the end of life.
But before we turn to them I’d like to underline how delighted I was to be asked to speak at this conference because all too often the needs of children and young people with life-shortening conditions are overlooked, misunderstood or ignored. The country is only just coming to terms with speaking about end of life care for adults, and this is thanks in no small part to the Dying Matters Campaign initiated by NCPC.
One size fits all approach
But there is still a huge taboo around dying children and childhood death. The lack of public interest has, unfortunately, also been reflected in a lack of policy focus. Despite the efforts of some excellent officials such as NHS England’s Professor Bee Wee, National Clinical Director of End of Life Care, the needs of children are too often wrapped up in a one size fits all approach which is orientated around adults.
These children have the weakest voice, they are most vulnerable and it is important that we use platforms such as this to amplify their concerns and those of their families.
Standards, guidance and regulation should, or certainly have, the capacity to help with this and improve the quality of care at end of life for these children and young people.
I know there are examples where regulation has worked well in improving end of life care. For example, Bristol Children’s Hospital have new posts, by applying the new cardiac standards, which say to be a cardiac centre there should be a supporting bereavement service, standards have brought a focus to the care – and helped a small team have a higher profile within their organisation and bringing extra resources their way.
And there are some examples where guidance does recognise the needs of children and young people – we look forward to the publication of the NICE guidelines in December this year: ‘End of life care for infants, children and young people’ which will give us much needed universal standards for children’s palliative care and we look forward to continuing to contribute to this vital piece of work.
But these are exceptions to the rule.
I’m going to use these 10 minutes to focus on how we can do better. How standards, guidance and regulation can improve the quality of life of care
Four key challenges
I am purposefully addressing this question with child and family in focus, in order to get best outcomes for them. If the providers are to provide well for children and families, then it seems to us at TFSL that the four points I should highlight are:
1 Numbers & need
4 Recognise children and the standards of care they need
No 1 Understanding numbers and need
If we don’t know how many children and young people have life shortening conditions and we therefore don’t fully understand the complexity of their conditions how can services be adequately budgeted for?
The last piece of UK wide research ‘Life-limiting and life-threatening conditions in children and young people in the United Kingdom; national and regional prevalence in relation to socioeconomic status and ethnicity’ by Fraser et al, University of York, was published in 2011.
It suggested there are around 49,000 children and young people in the UK who have life-shortening conditions. However, a further study last year revealed that the number of children and young people in Scotland with life shortening conditions was underestimated by a frightening 50%.
If we applied that to the whole of the UK it would mean there are some 25,000 more children and young people whose needs are not being recognised nor being budgeted for.
If we don’t know how many children and young people have life shortening conditions and we therefore don’t fully understand the complexity of their conditions how can services be adequately budgeted for? How can Local Authorities and CCGs adequately fund those services? How can you regulate or assess whether services are meeting need? How can we hope to improve the quality of end of life care?
A clinical data set has been developed for adults but there are no such plans for children’s palliative care….
There is similarly a lack of coherent data on services and spend by Local Authorities and CCGs for children’s palliative care. This means we are unable to ascertain how much is being spent on palliative care for children and young people.
I’d like to see common reporting standards which would allow patients and the public to see and compare how much CCGs are spending in this area. With this data we could then map spend by need – we could inform and improve the intelligent use of data to improve the commissioning process and allow regulators to build a clearer picture of cost effectiveness.
Our challenge: we would like CQC and Ofsted to sit down with us to discuss how we might address this gap in understanding need. How can they hold CCGs, local authorities, health and wellbeing boards and service providers to account over the ways in which they:
collect data to understand the demand for children’s palliative care
share that data
use that data so that children with life-shortening conditions are part of local commissioning strategies.
No 2 Integration
Regulation should not just focus on single service providers but also ask and encourage how services align and join up in a way that makes them much more people or patient focused.
The funding and commissioning environment is shifting towards greater integration through initiatives such as Integrated Personal Commissioning and the development of Sustainability and Transformation Plans.
It is vital that regulation and guidance works effectively to encourage services to join up and collaborate to help support and ease children and their families through what is a painful and unforgiving process.
I have long been moved and indeed motivated by this quote from a parent carer of a child with a life shortening condition:
“It’s a minefield and you get frightened going through it. Services don’t join up and people don’t explain things to you. By the time I had made it all fit together, my child had passed away. That makes me sad that he could have had so much more out of life.”
Regulation should not just focus on single service providers but also ask and encourage how services align and join up in a way that makes them much more people or patient focussed.
I therefore welcome and encourage the CQC to continue to develop the approach of looking at patient journeys across services as well as within a service. There is wide variation here, particularly with the level of involvement of primary care services.
I’m increasingly interested in how CQC and Ofsted, for example, could better align, share information that starts to provide a whole system approach, rather than a silo approach to regulation.
Safe effective and cost effective children’s palliative care requires effective partnership between specialist children’s palliative care, other health providers especially community children’s nurses, children’s hospices and other providers such as primary care and hospital paediatrics and others such as social care and education services. We therefore encourage the inspection to include an element of assessment of partnership working and networking but to be mindful of where responsibility for this partnership forming should rest. We also call for a consistent approach across CQC inspectorates to regulating children’s palliative care services regardless of the setting in which they are delivered.
Our challenge: Just as we are starting to see the development of Integrated Health and Social Care – how can we help regulators collaborate so that a whole system approach is taken to inspection and regulation to encourage stronger partnership working across service providers.
No 3 Make sure regulation is proportionate and helpful
In a challenging funding environment. . . it is vital that resources are focused on direct delivery of care to children and families.
The Government has established The Cutting Red Tape team to “work with industry, Departments and regulators in a collective effort to identify unnecessary regulation and poor implementation of it and drive reform.”
I’ve been wondering how we can encourage the application of this initiative to the work across the children’s palliative care sector?
In a challenging funding environment, when we are supporting an ever increasing number of children with life-shortening conditions, it is vital that resources are focused on direct delivery of care to children and families.
Absolutely, organisations must be accountable for services provided and expending resources, and the safeguarding of children and young people is of paramount importance to all of us – we need transparency and accountability. But regulation and contractual reporting must be proportionate and informative – it must help improve service provision not impoverish it.
Our challenge: can we work with the Cutting Red Tape team to undertake a review to ensure that guidance, regulation is proportionate and understood and applied appropriately to the children’s palliative care sector?
No 4 Recognise the difference between end of life care for children and adults
Young people have a range of unpredictable conditions which means that they may have repeated ‘end of life phases’
In our response to The National Institute for Health and Care Excellence (NICE) guidance ‘Care of the Dying Adult’ in September 2015 we welcome the emphasis on personalized care. However, we were disappointed that they failed to address the additional challenges in caring for young adults with life-limiting conditions. This group of young adults is growing in number due to improved medical treatments, information and support.
Young people have a range of unpredictable conditions which means that they may have repeated ‘end of life phases’. They also have varying levels of capacity and some may want additional parental involvement in decisions around their care. The guidelines also do not set out how children’s and adults’ services should work together and communicate clearly when a young person is transitioning between services, nor do they specify that young people must receive care in an age-appropriate setting.
We therefore look forward to the publication in December of NICE’s guidance on ‘End of life care for infants, children and young people’ as a significant opportunity to address these concerns.
Clinical guidelines should emphasise the need for age-appropriate end of life care to be provided to this unique group, in age-appropriate settings.
There is an opportunity to build this understanding more widely.
The CQC document ‘implementing our vision over 5 years’ says: ‘We will support our staff and develop the right processes, capabilities and behaviours to deliver our purpose’.
This is absolutely critical because our members advise that children’s hospices do not yet have inspectors with the ‘capabilities’ to deliver their purpose. We welcome that the CQC have approached Together for Short Lives for training for their inspectors – we extend this opportunity to others to help improve understanding and engagement with this group.
To support this, we also suggest that there is a monitoring framework that is specific for children’s hospices – the current use of the joint framework for both adult and children’s hospices does not sufficiently recognise the difference between adult and children.
Can we build on our work to support CQC to train inspectors so that they have a better knowledge and understanding of children’s palliative care? This is particularly so inspectors understand how children’s and adult palliative care is different and why.
So, how do we improve the quality of care at the end of life through standards, guidance and regulation?
Addressing understanding of numbers & need
Integration: how can we help regulators collaborate so that a whole system approach is taken to inspection and regulation to encourage stronger partnership working
Proportionality: ensure that guidance, regulation is proportionate and understood and applied appropriately to the children’s palliative care sector?
Recognise children: Can we build on our work to support CQC to train inspectors so that they have a better knowledge and understanding of children’s palliative care? This is particularly so inspectors understand how children’s and adult palliative care is different and why
As I said at the start of my presentation, I think there is an opportunity to address these challenges today to give these children and young people a better life tomorrow. We know we cannot change their diagnosis, but by working together we can improve the time, albeit short, that they do have.
Barbara Gelb is the CEO of Together for Short Lives. The text of this blog is taken from a speech Barabara made this morning at the Westminster Health Forum.