North Wales MS and Chair of the Cross Party Group on Hospices and Palliative Care in the Senedd, Mark Isherwood, has today led a debate in the Welsh Parliament calling for funding for the two children’s Hospices in Wales.
Mr Isherwood, who has previously spoken both in the Senedd and at Hospice events of the need for further funding for Tŷ Hafan and Tŷ Gobaith, today put forward their call for “all political parties to commit to establishing a Lifeline Fund for Children’s Hospices in the next Senedd term”.
He also spoke of the vital support the Hospices provide to families of children with life-limiting conditions, quoting a number of families in North Wales who depend on their services (see notes below).
He said:
“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.”
He added:
“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.
“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 they 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.
“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.”
Mr Isherwood stressed that the issue of inequitable funding for Children’s Hospices in Wales is not new, and highlighted the huge discrepancies in funding between Wales and the other UK nations, with Children’s Hospices in Wales receiving 10% of their funding from the state, compared to 50% in Scotland, 25% in Northern Ireland and 21% in England.
He added: “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.”
“As Children’s Hospices themselves have told me: ‘We are not looking for handouts, we are looking for something that guarantees to these families that we will be there’.”
ENDS
Notes To Editors:
Extract from Mark’s speech quoting families in North Wales who depend on the support provided by children’s hospices:
“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.”