It’s time for a new Welsh way for children’s hospice care
Children’s palliative care in Wales is almost entirely funded by donations from the public. Here, Rob Jones, chief executive of Tŷ Hafan, and Andy Goldsmith, chief executive of Tŷ Gobaith, explain why this needs to change
AS THE chief executives of the two children’s hospices in Wales – Tŷ Hafan and Tŷ Gobaith – we get to see some of the most amazing aspects of human behaviour every day.
We are constantly inspired by the generosity, bravery and ingenuity of our volunteers, staff, family and, of course, from the children we care for.
It is little wonder that visitors have their view of hospice care utterly transformed within minutes of coming through the doors – these are places full of love, fun and happiness.
The warmth of the welcome isn’t the only surprise that greets people getting to grips with our work for the first time.
The other thing that never fails to shock people is that we provide this care almost entirely from charitable donations.
When asked to guess, most people assume we’re either wholly or mostly funded by Government, but actually, taking Tŷ Hafan as an example, we can receive less than 6% of funding from the public sector.
If you were to follow a life-limited child’s journey from birth, to visits to the doctor and hospital, treatment, medication and diagnosis – you can see that all these services are, rightly, provided freely on the NHS.
But, when it comes to providing holistic palliative and end-of-life care, it falls to accountants doing sponsored skydives, nurses running marathons, and shoppers choosing our charity shops to pay for specialist care and support at that most crucial time. It doesn’t seem right.
Today we are taking a report on funding issues to Assembly Members in Cardiff Bay to start a proper discussion about this.
We do so in the hope we can establish a genuinely constructive cross-party dialogue about the future of children’s hospices in Wales.
We are encouraged by the early conversations we have had with the Health Minister, and his officials, but we think we need to progress.
It has been said to us that you could never imagine a Wales without a Tŷ Hafan, or a Tŷ Gobaith, but the charities are just 20 and 16 years old respectively.
And just as 20 years ago Wales clearly needed these hospices to be built, now these hospices need Wales to support our work more closely than ever before.
The care and support we provide has changed beyond all recognition over that time, and it is this more than anything which drives us to get serious about a new funding model for Wales.
When we first opened our doors we were there to provide respite care for families with very ill children, and occasionally end-of-life support was also provided.
I think many people still think this is all we do, but in truth the scale and scope of the care we provide now has changed immeasurably.
This includes clinical care for children with highly complex conditions, outreach services at home, bereavement support, clinical research and education and training for other providers.
It is also true to say that as a society we have changed how we think about some of these functions over the past 20 years – they are no longer nice to have, over and above services.
We regard proper bereavement support as a fundamental right for example, and yet we rely on charitable donations to deliver it.
Equally, respite stays themselves are not now viewed as a social function, but a vital element of wellbeing and emotional health support for families.
The pace of change in demand is quickening. Over the past year alone we have seen a move from planned respite stays being the majority of care, to a situation where over 50% of stays are now unplanned stays in response to crisis, meeting a need that cannot be addressed by existing health or social care provision.
All this stacks up in favour of change.
Particularly, as our report published today shows that Wales has now fallen behind the other countries in the UK in how children’s hospices are funded.
A recent commitment in Scotland, to fund CHAS (Children’s Hospices Across Scotland) at around 50% of their running costs means that not only can Scotland honour its commitment to provide end-of-life care to everyone who needs it, it also allows the charity to work more closely with the NHS, local authorities and other partners.
This is our ambition for Wales. It isn’t just a matter of pounds, shillings and pence – though that is important – it is also about how we work together in a strategic way to best serve the interests of life-limited children in our country.
Whether it is the specialist community nurses funded by Tŷ Hafan in Swansea and Powys, or the out-ofhours End of Life Nursing Service developed by Tŷ Gobaith in north Wales – we are showing what we can do in partnership.
We need to properly unlock this potential.
We want to be part of finding our own Welsh way to deliver paediatric palliative care to the highest standard, to everyone who needs it, and today is an important step on that journey as we broaden the conversation to decision makers in the Assembly.