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A time for reflection

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I always find Christmas a time for reflection. Nature feels like it is shutting down, the leaves have fallen and the days are short. The year is drawing to an end and the window to realise those goals for the year, made with such gusto in January, is closing (for the record, I am still the same weight as I was on new year’s day, if anything a little heavier). It is also a time to be with family and friends, which inevitably means reflecting on the passage of time, how the little ones are not so little anymore, and feeling the absence of loved ones no longer with us.

For me personally, 2018 has been one of significant change, in large part because I joined Together for Short Lives as Chief Executive half way through the year. Like all great jobs it has been exciting, demanding, exhilarating and exhausting. It was been very emotional too – I have lost count of the number of times I have laughed and the number of times I have cried. Many of the very personal family stories and situations have been very difficult. But it has also reminded me what amazing people exist in the world – the children and young people with life-limiting illness, their families, the extraordinary professionals, volunteers and organisations who support them and the reservoir of generous financial and practical support offered by communities to keep these services afloat.

2018. . . has reminded me what amazing people exist in the world – the children and young people living with a life-limiting illness, their families, the extraordinary professionals, volunteers and organisations who support them

Since July, I have visited more than 25 organisations across the UK and plan many more in the new year. I have been to all four nations, visited children’s hospitals, children’s hospices and community services. I have spent time with tiny week-old babies in Paediatric Intensive Care one week and young adults in the midst of making the transition to adult services the next. I have gone from speaking to a parent coming to terms with a recent life-limiting diagnosis for their child to another grieving the heart-breaking loss of theirs. I have been privileged enough to go to the X Factor Final, Downing Street (twice!) and been on the telly and the radio. All shared with inspirational parents, prepared to tell their story, however painful, to influence a better outcome for the children and families of the future. Ordinary families, living extraordinary lives.

So what have I learned on this six month road trip? Well, what stands out is that the number of children living with a life-limiting illness is growing. This is perhaps not surprising. The population as a whole is getting older so it is no surprise that with better diagnosis and treatment children and young people are living longer too. This is cause for celebration. But with it comes a significant increase in the complexity of their need and their care. And this is putting growing pressure on services – in hospital, in children’s hospices, in social care and in the community.

What stands out is that the number of children living with a life-limiting illness is growing . . . And this is putting growing pressure on services

I have also seen the variation in support available in different areas, and the uneven commissioning of children’s palliative care. It cannot be right that two children with similar conditions and needs, living in different areas can get access to very different services, because commissioners are not understanding and meeting need in a consistent way. This was highlighted in the All Party Parliamentary Group (APPG) report in October which labelled it ‘a wholly avoidable health inequality’. If we aren’t careful, this variation will be exacerbated by increasing demand and complexity and diminishing resources.

Above all I have been struck by enormous commitment and energy of the people working in children’s palliative care. Wherever I have been, however pressed people are for time, I have been staggered by the passion and joy they take in their work. And the time they take to make sure children and families get the support they need.

It cannot be right that two children with similar conditions and needs, living in different areas can get access to very different services. . . If we aren’t careful, this variation will be exacerbated by increasing demand and diminishing resources

I have also been hugely proud to be Chief Executive of an organisation doing great things to help make sure that no child gets left behind. We’ve continued to help individual families find the right support services, care and information through our helpline, family forum and website. We have launched our digital care transfer tool, which helps families gather, store and keep updated all the information on their child’s care plans and medicines, and can be shared with health professionals at the swipe of a smartphone. We have seen paid parental bereavement leave – an issue we have lobbied and campaigned on for years – be enshrined in law. We updated the seminal guide to children’s palliative care, and launched and funded eight new innovative transition projects, helping young people with life-limiting conditions transition to adulthood, with all that entails for their care and emotional needs. And we’ve helped the APPG publish its inquiry report into what needs to change to reduce inequalities in children’s palliative care.

I have been hugely proud to be Chief Executive of an organisation doing great things to help make sure that no child gets left behind. There are still too many children and families not getting the support they need

And I’ll be keeping this list of what needs to change in my head over the Christmas period. Because while reflection is healthy and reassuring, we cannot rest on our laurels. There are still too many children and families not getting the support they need, too many health and social care services in the voluntary and statutory sector under-funded by commissioners, too many families having to battle and fight to get help and support.

I am lucky to lead a team committed to making 2019 the year when we tackle these inequalities and close the gap.

Bring it on.

But first, a restful and peaceful Christmas to you all.

Andy Fletcher is Chief Executive of Together for Short Lives. Please help us continue our work to help seriously ill children, their families and improve care for them by supporting our work this Christmas.

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