An estimated 3600 children in Wales are living with a life-limiting condition.
Although, approximately 800 of these children have ongoing palliative care needs which require contact with hospital services, only about half of these currently access respite at children’s hospices.
The incidence and prevalence study recently commissioned by the All Wales End of Life Board Core Group will give us more up-to-date figures about the number of children with palliative care needs, and it is expected this figure will rise significantly in their report.
As Chair of the Cross Party Group on Hospices and Palliative Care in this Senedd, I sponsored a spoke at Hospice UK’s ‘Hospice Care Week’ Senedd event in October 2019, when I said:
“children’s hospices tell me that although they operate on a “buy one, get seven or eight free” basis, they’ve had flatline statutory funding for ten years”.
The following month I led a debate here noting the Cross Party Group on Hospices and Palliative Care’s report on Inequalities in Access to Hospice and Palliative Care, when I said:
“ Wales’ Children’s Hospices are calling for action on the recommendations made by the Cross Party Group Report and asking the Welsh Government to fund a study which examines the demands for Childrens Palliative Care in Wales – and the extent to which this is being met”.
A year late in November 2020, the two Children’s Hospice Charities in Wales, Tŷ Hafan & Tŷ Gobaith, jointly published Family Voices.
This report powerfully presented, loudly and clearly, and in the their words, the most important concerns of families who have children with life-limiting conditions. They called the children’s hospices in Wales “our lifeline” and said they urgently needed more of the care that only the hospices could provide, especially in relation to respite.
The report outlines their proposal to move towards a sustainable model of funding that is more aligned with Children’s Hospice charities in other UK nations.
This funding would give the children’s hospices in Wales confidence to sustain and expand their services to better meet the needs of all children with life limiting conditions and their families across the country, in turn helping address Wales’ ambition to be a ‘compassionate country’.
They are calling on all political parties to commit to establishing a Lifeline Fund for children’s hospices in the next Senedd term.
Children's hospice's play a vital role in the lives of children and families whose worlds are turned upside down by the diagnosis of a life limiting illness – with families describing children's hospices as their 'lifeline'.
The vast majority of families surveyed for the report said that hospices were their only, or primary, source of respite.
However, relying almost entirely on charitable funding they are only able to meet those needs about a quarter of the time.
The message is very clear – families urgently need more support.
This is not about Covid funding, for which they are extremely grateful, this is about creating a sustainable funding source so that we are not reliant on the generosity of the Welsh public for 90% or more of their funding, particularly at this time of great economic uncertainty.
And it’s not just about respite.
As part of the Health & Social Care ecosystem, they provide a range of services to support children and families at their hospices, at home, in hospital and in our communities including family support practitioners, sibling support, bereavement counselling and end of life care.
On Monday, I spoke to Nerys Davies from Llanrwst, one of several families who have shared their hospice story with me.
Nerys’s son, Bedwyr, 5, who now accesses Ty Gobaith, was diagnosed with the genetic condition Coffin- Siris syndrome two years ago. The condition causes significant learning disability and is extremely rare, with just 200 children diagnosed worldwide. Bedwyr is also tube fed, has respiratory problems and cannot speak.
As Nerys says, “that doesn’t stop him communicating though. He communicates a lot through actions, such as taking you to the kitchen to the cupboard where his snacks are kept! He is a right little monkey!”
Looking after a child with a condition like Bedwyr’s is a full
time role.
As Nerys says “It’s the little things you really look forward to that other people can take for granted, like being able to sleep at night, or sit down and eat a meal in peace even if it is just beans on toast, or just to have a cup of tea.”
“Hospice respite is so important for us as parents physically and mentally because without it families end up in crisis. That will end up costing social services and health much more to deal with.”
As she also told me “we can access Ysbyty Gwynedd, but Tŷ Gobaith has the specialist knowledge for children and “it’s a one in a million service for all of us”.
Bryn and Liz Davies from Kinmel Bay first became aware that their unborn baby had a heart condition at the 20 week scan. At the age of two, having already undergone two major operations, Seren was also diagnosed with an extremely rare genetic disorder.
Seren loved her respite visits to Tŷ Gobaith.
Because she was so happy and being looked after by professional nurses who knew about and understood her condition, Liz and Bryn felt able to catch up on much needed sleep and recharge their batteries, and also to spend time with their son Iwan.
Bryn said “We had the reassurance that Seren was in really good hands and that gave us time to make sure Iwan had a childhood as well”.
Sadly Seren died in January this year, aged just six years old.
Oliver Evans from Acrefair suffered a viral infection as a baby that has left him with chronic lung disease and kidney problems.
To survive, he needs to stay connected 24 hours a day to his own personal oxygen supply and take a whole regime of different medicines.
As his Mum said “During the Covid lockdowns when we were shielding they are always there too, calling me regularly to check on us and offer help and advice, and even coming to talk through the window in full PPE. They even helped us by collecting all Oliver’s medication and bringing it to us.
“I can’t start to think what life would be like for us without Tŷ Gobaith /Hope House. They really are our lifeline.”
Children's hospices are primarily involved in providing high intensity lifelong care and support over an extended duration, often many years, rather than often sudden onset, high intensity but relatively short duration care.
The issue of inequitable funding for children’s hospices in Wales is not new.
In recent years they have fallen behind other UK nations in the support available for these most vulnerable families.
Children’s hospices in Scotland receive half their funding from the state.
In England it is 21%, in Northern Ireland it is 25%.
The Republic of Ireland recently announced it would fund 30% of running costs for their children’s hospices.
In Wales, the comparable figure is less than 10%.
What has changed is the evidence collated in the Family Voices Report about what impact this limited funding settlement is having on some of the most vulnerable families in Wales.
This is why they are calling for a “Lifeline Fund” for Children’s Hospices in Wales:
- To fund additional crucial nights of care at children’s hospices, for children with life-limited conditions in Wales. Family Voices was clear - extra nights of nurse-led respite for each child and family supported by the hospices are essential to the whole family’s mental health and relationships, and saves them from ‘breaking’.
- To allow hospices to develop positive relationships with the family throughout a child’s life, establishing trusted partnership working, and a deeper understanding of the child and families’ needs. This in turn will lead to more effective end of life care and bereavement support, and better outcomes for the families at the time when they face the inevitable and heart-breaking loss of their child.
- To reduce unplanned and crisis hospital admissions for children with life-limiting conditions, in turn reducing the burden on the NHS.
- To ensure our hospices can sustain and expand their care in other areas such as: physiotherapy and other therapeutic support, clinical support and advice – and as part of the broader ecosystem of NHS providers, end-of-life care and bereavement support.
- To give the hospices the financial confidence to plan to expand sustainable services to reach more children and families, knowing that they can meet their needs without depriving others of essential services.
- To support local government to meet its statutory requirements in relation to respite care, which cannot be met without a sustainable children’s hospice sector.
- To move Wales from bottom of the home nations table in terms of funding per-capita for children’s hospices.
- And, ultimately and to ensure Wales makes a vital step in our national mission to become a Compassionate Country.
I will finish by quoting the Children’s Hospices themselves who told me:
“We are proud to be charities.
“We are not looking for handouts, we are looking for something that guarantees to these families that we will be there.
“We just want to fill the need.
“Last but not least, statutory funding currently ‘stops at our doors’ – opening this up would enable us to offer more respite and more services to those who need us”.