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Usk woman’s experience at Ty Hafan features in funding plea

A MUM has backed a Welsh hospice’s plea to the Welsh Government for more funding to keep their vital services going.

Khloe Pavis grew up in Usk and moved away to Hampshire for work, but returned to her hometown in 2019. The single mum moved back after having to leave her job due to her son Llewie’s care needs after he sustained an acquired brain injury and she needed more family support.

Thankfully children’s hospice Tŷ Hafan, in Sully, was at hand to help out – and now Ms Pavis is getting behind the organisation’s appeal for greater funding support from the Welsh Government.

“Llewie has an acquired brain injury and requires 2:1 care 24/7,” said Ms Pavis.

“I am a single mum so this has its challenges. We first got referred to Tŷ Hafan in June 2019 after I moved to Wales from Hampshire.”

Since being referred to the hospice, they have been a lifeline for Ms Pavis.

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

“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’ve 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.”

Their work has really helped the family and Ms Pavis believes the government should be backing them more.

“[Without Tŷ Hafan] I would be exhausted and Llewie wouldn’t be in as safe of an environment as he is,” she said. “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 per cent 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 off some support but it is 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.”

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Ms Pavis spoke out about her experience with Tŷ Hafan as the hospice joins forces with North Wales based Tŷ Gobaith to call for a new sustainable ‘Lifeline Fund’ and funding parity with the rest of the UK to make sure that all children with life-limiting conditions and their families can receive vital support.

Between the two hospices, they provide respite and palliative care for more than 400 families. Their annual funding from the Welsh Government is less than 10 per cent of the funding they need to operate – compared to children’s hospices in England who get 21 per cent from the UK Government. In Northern Ireland, the hospices get 25 percent from their government and half of the annual funding for Scottish hospices comes from the Government.

Representatives from the two hospices will be at a debate on children’s hospice provision in the Senedd on Wednesday, March 24 and they hope it 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 has been tabled by chair of the Senedd cross party group on hospices and palliative care, Mark Isherwood, who is also the MS for North Wales.

The proposal for the fund comes from a joint report by the two hospices that was published last year called Family Voices. It was a chance for families across Wales to provide their experiences, hopes and fears and believe that the hospices are a lifeline and more of their care is needed.

A review on all hospice funding in Wales is to be completed early in the next Senedd term, which was spurred on by a meeting between Tŷ Hafan chief executive Maria Timon Samra and Tŷ Gobaith chief executive Andy Goldsmith and health minister Vaughan Gething at the start of the year.

Ms Samra 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.”

Mr Goldsmith 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’.”

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