Wales’ children’s hospices call for new sustainable ‘Lifeline Fund’ and funding parity with rest of UK

Wales’ children’s hospices call for new sustainable ‘Lifeline Fund‘ and funding parity with rest of UK 

In the run up to elections in Wales this May, Wales’ two children’s hospices have joined forces to call for a new sustainable ‘Lifeline Fund‘ and funding parity with the rest of the UK to ensure that all children with life-limiting conditions and their families can receive the support they desperately need. 

Between them, South Wales based Tŷ Hafan and North Wales based Tŷ Gobaith provide respite and palliative care for more than 400 families with children with life–limiting conditions, but currently the two hospices receive less than 10% of their annual funding from the Welsh Government.  

Across the border, children’s hospices in England receive 21% of their funding from the UK Government – more than double the amount of government funding received by children’s hospices in Wales.  Meanwhile government funding for children’s hospices in Northern Ireland and Scotland runs at 25% and 50% respectively, making children’s hospices in Wales the poor relation of those elsewhere in the UK. 

Representatives from Tŷ Hafan and Tŷ Gobaith are hoping a debate on the funding of children’s hospice provision in Wales, set to take place next week in the Senedd, will help to inform the process of the establishment of a ‘Lifeline Fund‘ putting them on funding parity with their peers across the border. 

The debate, ‘Children’s Hospices – a Lifeline Fund for Wales’, scheduled to take place on Wednesday 24 March, has been tabled by Mark Isherwood MS, the Chair of the Senedd Cross Party Group on Hospices and Palliative Care and Welsh Conservative MS for North Wales.  

Mr Isherwood is the Chair of the Cross–Party Group in the Senedd on Hospices and Palliative Care. The debate is scheduled to be the last item of business before the fifth Welsh Parliament is dissolved, and will highlight the issues faced by some of Wales’ most vulnerable children and their families, before the parties start to campaign for re-election.  

Maria Timon Samra, CEO of Tŷ Hafan, and Andy Goldsmith, CEO of Tŷ Gobaith, say that they hope the debate will lead to all political parties in Wales committing to the establishment of a sustainable and fair funding system – a ‘Lifeline Fund‘ – for the specialist respite and palliative care relied upon by children with life-limiting conditions and their families.  

Their proposal for a ‘Lifeline Fund‘ stems from a report published jointly by Tŷ Hafan and Tŷ Gobaith in 2020. In the Family Voices report, families from across Wales set out their experiences, hopes and fears. Describing children’s hospices as “our lifeline“, families said they urgently need more of the care that only hospices can provide, especially in relation to respite care. 

Health Minister Vaughan Gething met with Maria Timon Samra and Andy Goldsmith earlier this year and in the written statement entitled ‘Update Palliative and End of Life Care’ published on 5 March committed to a review of all hospice funding in Wales to be completed early in the next Senedd term.  

Maria Timon Samra, CEO of Tŷ Hafan, said, “We are grateful for those from across the political spectrum who met with us to discuss the findings of our Family Voices report in 2020, and to learn more about the experiences of these children and their families.  

“But merely articulating the problems facing some of Wales most vulnerable children and families is not going to make a real difference in these unfairly difficult lives. What we need now is a commitment to change, which is why we are calling for the establishment of a ‘Lifeline Fund‘ for children’s hospices in Wales within in the next Senedd term. As charities we are supported by the generosity of the Welsh public who recognize the plight of these families; we now need our Government to back this up.“ 

Andy Goldsmith, CEO of Tŷ Gobaith said: “Our proposal is 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, plan and expand our services to better meet the need of all children with life-limiting conditions and their families across the country, in turn addressing Wales’ ambition to be a ‘compassionate country’.” 

Mark Isherwood AM said: “Wales needs a Lifeline Fund for children’s hospices to fairly and sustainably provide the specialist care needed by children with life-limiting conditions and their families. It’s high time the Welsh Government brought public funding for Wales’ children’s hospices in line with that provided to children’s hospices in the other UK nations.”

Sarah, Molly and Emily’s story

Sarah, Molly and Emily

“I would be lost without our Tŷ Hafan family.”

“My name is Sarah Howell, I live in Pembrokeshire, West Wales, and I am Mum of two beautiful girls Molly and Emily Griffiths.

“Molly and Emily both have Rett syndrome but despite their condition they’re always happy, smiling, very sociable but most of all very brave young girls, and they always put
a smile on everyone’s face especially Mammy and Daddy.

“As for us, speaking on behalf of myself and James (Dad) – struggling to be parents and carers over the years has been very difficult emotionally and physically. I don’t think I’d have coped well without the support from family especially my late Mum and also Tŷ Hafan

“We first heard about Tŷ Hafan from our key worker back in 2009 and at first we were unsure about leaving the girls in respite, we’d never done anything like that before but
that feeling soon changed.

“In 2010 we had our first visit and as soon as we arrived we felt at home straight away, we immediately felt comfortable and relaxed by the amazing staff. We absolutely loved it and have done ever since. I really don’t know what we would have done without it because despite our family around us supporting us we always felt that having Tŷ Hafan made that feeling of isolation go away because you met other lovely families in the same boat as you, you knew that when you’d talk to them they’d understand completely how you were feeling
and we’ve kept in touch with a few families we’ve met over the years which is lovely.

“I always feel that when I’m at Tŷ Hafan it’s not just rest time that’s important it’s also
time with my girls where I can be just a Mum instead of a carer – and so it’s for those
reasons our government need to fund more to this amazing hospice because without it,
us and a lot of other families would be completely lost, so it’s important that our
government realise how much this means to us.

“Through the pandemic it’s been very difficult for us all – with the girls not attending
school, not having carers come in and help out, not seeing family and friends, and
visiting places we love.

“Our respite overnight care here weren’t able to provide the weekly support we were
getting so this was a massive strain on us throughout. However they did provide some
support, the girls had a few overnight stays with them but the gap in between was huge
when you’re non-stop, so that’s when Tŷ Hafan stepped in.

“Our support worker Kirsty kept in touch on a regular basis to see how we were and it
was brought to her attention the strain we were under, so the hospice were able to give
us some respite in September and November 2020, so you can imagine this was an
absolute godsend for us.

“We have always appreciated the help we receive from the hospice and I would be lost
without our Tŷ Hafan family. They deserve a lot more than what they get from the
government

Sami and Esmai’s story

Esmai Roddy
“Without Tŷ Hafan I would struggle big time”

Four-year-old Esmai Roddy from Barry, South Wales, was diagnosed with CHARGE Syndrome shortly after she was born. She and her mum, Sami, were referred to Tŷ Hafan in 2017 when Esmai was just nine months old and they have been using its services ever since.

“CHARGE Syndrome means that Esmai is partly blind and partly deaf. She also has to be fed through a tube, she has no balance, regular seizures, sleeping issues and behavioural issues,” says Sami. “She’s doing really well at the moment, but it’s full on looking after her. I don’t get a lot of sleep most days. This has left me with depression and anxiety.

“Tŷ Hafan is the only respite that me and Esmai get,” says Sami. “For the first couple of years, when we got to stay there for a couple of days – twice a year – I stayed with her in the hospice. Then, when Covid hit, we were told we’d only get one visit a year, although lately, because we live in Barry and are close to the hospice, Esmai has been able to go in for a couple more breaks as they have called us at very short notice when they have had a bed free.

“Looking after Esmai is a 24/7 job and “When Esmai goes to Tŷ Hafan for respite care it enables me to do the simplest little things, like have a bath, and sleep. Things that most other people totally take for granted.

“Without Tŷ Hafan I would struggle big time as, right now, it’s the only respite I get. My
mum used to help me with her quite a lot, but we’ve not been able to see her properly
for a year now due to the pandemic.

“I can’t believe that Tŷ Hafan gets so little money from the Welsh Government. It’s
awful. It’s a vital service and people like me and Esmai get referred there by the health
service. I think that the Welsh Government should give Tŷ Hafan lots more money,
every year, to help keep it running.

“Esmai is constantly asking can she go to Ty Hafan now. She loves her room there.
When I drop her off she gives me a little wave and says ‘bye mum’ and then off she
goes. It’s is so good for both of us, for our mental and physical health.

“Tŷ Hafan is the only help outside my family that I have ever been offered. I don’t know
what we would do without it.”

Khloe and Llewie’s story

Llewie Pavis

“Tŷ Hafan has been invaluable and I couldn’t have coped without it.”

Khloe and Llewie Pavis

“My name is Khloe Pavis and my son, Llewie, and I live together in Usk, South East Wales, I grew up here and we have moved back after living in Hampshire for my work due to needing more family support and me having to leave my job due to Llewie’s care needs. Llewie has an acquired brain injury and requires 2:1 care 24/7. I am a single mum
so this has its challenges.

“We first got referred to Tŷ Hafan in June 2019 after moving to Wales from Hampshire.

“Tŷ Hafan has given us respite for the past few years and also support for helping with his behaviour and coping with medical procedures. It’s given me a rest when I have been
exhausted beyond words and local council services couldn’t help as we didn’t have care set up as they can’t supply carers.

“Tŷ Hafan has given us respite throughout the pandemic, we were unlucky enough to be flooded out of our home just before the pandemic, Tŷ Hafan came to the house and
offered emotional support and gave us a gift voucher to help with the clean-up effort and get back on our feet. They have contacted me throughout the pandemic and when our
carers have been unable to come to work due to isolation they have provided care, or
on move week when we moved from one Airbnb to another Airbnb during the pandemic
they had Llewie so he was in a safe environment and I could concentrate on the move
and creating a safe environment for Llewie to come into again. Tŷ Hafan has been
invaluable and I couldn’t have coped without it.

“I would be exhausted and Llewie wouldn’t be in as safe of an environment as he is. It’s also meant I’m happier and so is Llewie. He loves Tŷ Hafan, he giggles and smiles as
he runs around there and the staff make us feel like part of their family.

“I think Tŷ Hafan should receive a lot more funding from the Welsh Government because it’s a service that is referred to by medical professionals, it’s not through choice. If a health board refers you it should be 100% paid for. Children like Llewie are too complex to be looked after by grandmas and grandpas like most children and the parents will not receive that much needed break unless it’s from a service like Tŷ Hafan. Direct payments offer some support but it’s never a complete break where you can switch off, you are always that person to be called on.

“I can’t thank Tŷ Hafan enough, it’s a magical place and somewhere where we are
happy, I can be mum and not a carer and we can bond as a family.