Collaboration around the needs of people not the needs of bureaucracies

Barbara Gelb OBE, Chief Executive, Together for Short Lives

If ever there was a need to build understanding, partnership and collaboration acrossCapture sectors then it is now. But this collaboration must be centred around people not built round bureaucracies.

As we mark Children’s Hospice Week, the publication of the VCSE Review final report is both timely and welcome but, like many, I hope the positive words and reflections move quickly into clear and beneficial actions.

Engaging to understanding to integrate

One of the key recommendations in the report is that local strategic plans should be based on thorough engagement with local communities and VCSE organisations. This is vital. In our sector, too often we find that CCGs and local authorities fail to understand the needs of children with life shortening condition. All too often these children are ignored or misunderstood. The challenge is how do we improve that understanding?

Never, was this point more starkly illustrated than 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.”

This is a powerful and tragic reminder of what happens when we get things wrong. Yet other parents do report how well supported they are by well-planned and coordinated services. This inequity is unacceptable in the care of children whose lives are too short for time to be wasted on a constant struggle to get things right.

So we desperately want to help realise the laudable ambitions of the report by working with CCGs and local authorities to improve their understanding of these children, young people and their families and how they can better support them and join up services. We have published guidance to help with this but our struggle is as basic as being able to even engage in conversation with CCGs and local authorities to help them understand and deliver this as there is no collective mechanism to do so. Government can and must do more to open up these doors.

The challenge of transparency

The report recommends that funding for voluntary organisations should be transparent, long term and have a greater emphasis on social value. Hear hear, but boy, have we a way to go before we get there.

It’s a significant challenge for the population we represent. There is no central register showing how much local authorities or CCGs commission or spend on charitable services to support children with life limiting conditions. Indeed, the majority of CCGs and local authorities are unable to identify how much they spend on these services. I also wonder how many CCGs and local authorities know how many children are living with life limiting conditions in their area. This lack of knowledge makes this recommendation difficult to realise and I find this lack of transparency and accountability staggering. This is public money.

And moreover, I’m increasingly concerned that in our race to increase localism and devolve decision making we have created an accountability vacuum – we are without mechanism to hold these bodies to account or indeed praise and share best practice so others can learn from them.

NHS England should issue revised statutory Transforming Participation in Health and Care guidance in 2016 on working with the VCSE sector as a key way to meet CCGs’ Health and Social Care Act duty to involve

I wanted to use the recommendation above as a standalone subheading. It’s so important. And I would go further. Not only should CCGs work with charities and social enterprises but they should also report on how they are working. This will build transparency it will help mainstream this approach.

Raising expectation in this way is important. The overall approach to children’s palliative care is at best inconsistent and at worst typified by ignorance but in the main there is a patchy approach to provision. For example, we already know that children’s hospices receive on average 10% of their funding through CCGs and adult hospice receive 30%. I don’t know why; the life of a child is as valuable as the life of an adult.

Home is where the heart is?

The report argues that the future of the health and care system in England requires a greater focus on promoting wellbeing and helping people live well at home. Another positive tick in the box. Many families want to care for their child at home, but too often there are inadequate services to provide end of life care in the community – a lack of skilled workforce, available 24 hours, 7 days a week means that families simply don’t have any choice about the place where their child will die. There has to be recognition amongst CCGs and local authorities of the wider range of individuals and organisations which provide palliative care to children and young people, outside of hospitals and hospices but in the community.

Putting families’ first

There is so much to welcome in this report and I wholeheartedly agree with Alex Fox: voluntary organisations must be treated as equal partners in the strategic planning and delivery of services. But I would emphasise the extension of this to people. As the theme of this year’s Children’s Hospice Week states: it’s time we put families first.


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