English: As Chair of the cross-party group on hospices and palliative care in this Senedd, I sponsored and spoke at Hospice UK's Hospice Care Week Senedd event in October 2019, when I said that 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's children's hospices are calling for action on the recommendations made by the cross-party group report and asking the Welsh Government to fund the study that examines the demands for children's palliative care in Wales and the extent to which that is being met.' A year later, in November 2020, the two children's hospice charities in Wales, Tŷ Hafan and Tŷ Gobaith, jointly published their report 'Family Voices'. This report powerfully presented, loudly and clearly, and, in 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 all other UK nations. This funding will 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's ambition to be a compassionate country. They're calling on all political parties to commit to establishing a lifeline fund for children's hospices in the next Senedd term and, certainly, my party will commit to that pledge. Children's hospices 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're 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're grateful. This is about creating a sustainable funding source so that they're not reliant on the generosity of the Welsh public for 90 per cent 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 and 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 shared their hospice story with me. Nerys's son, Bedwyr, aged five, who now accesses Tŷ 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, so just taking you to the kitchen, to the cupboard, where his snacks are kept. He's 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's 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 a specialist knowledge for children, and it's a one-in-a-million service for all of us.'
Welsh: Fel Cadeirydd y grŵp trawsbleidiol ar hosbisau a gofal lliniarol yn y Senedd hon, noddais a siaradais yn nigwyddiad Wythnos Gofal Hosbis Hospice UK ym mis Hydref 2019, pan ddywedais fod hosbisau plant yn dweud er eu bod yn gweithredu ar sail "prynu un, cael saith neu wyth am ddim", cyllid gwastad statudol y maent wedi bod yn ei gael ers deng mlynedd. Y mis canlynol, arweiniais ddadl yma, gan nodi adroddiad y grŵp trawsbleidiol ar hosbisau a gofal lliniarol ar anghydraddoldebau mynediad at ofal hosbis a gofal lliniarol, pan ddywedais, 'Mae hosbisau plant Cymru yn galw am weithredu ar yr argymhellion a wnaed gan adroddiad y grŵp trawsbleidiol ac yn gofyn i Lywodraeth Cymru ariannu'r astudiaeth sy'n archwilio'r galw am ofal lliniarol i blant yng Nghymru ac i ba raddau y mae hynny'n cael ei gyflawni.' Flwyddyn yn ddiweddarach, ym mis Tachwedd 2020, cyhoeddodd y ddwy elusen hosbis plant yng Nghymru, Tŷ Hafan a Thŷ Gobaith, eu hadroddiad ar y cyd, 'Lleisiau ein Teuluoedd'. Roedd yr adroddiad hwn yn cyflwyno'n rymus ac yn glir, ac yn eu geiriau hwy, pryderon pwysicaf teuluoedd sydd â phlant â chyflyrau sy'n cyfyngu ar fywyd. Roeddent yn galw hosbisau plant yng Nghymru yn 'achubiaeth', ac yn dweud eu bod angen mwy o'r gofal na all ond hosbisau ei ddarparu a hynny ar frys, yn enwedig mewn perthynas â gofal seibiant. Mae'r adroddiad yn amlinellu eu cynnig i symud tuag at fodel ariannu cynaliadwy sy'n cyd-fynd yn well ag elusennau hosbisau plant ym mhob gwlad arall yn y DU. Bydd yr arian hwn yn rhoi hyder i hosbisau plant yng Nghymru allu cynnal ac ehangu eu gwasanaethau er mwyn diwallu'n well anghenion pob plentyn sydd â chyflyrau sy'n cyfyngu ar fywyd a'u teuluoedd, ledled y wlad, gan helpu yn eu tro i wireddu uchelgais Cymru i fod yn wlad dosturiol. Maent yn galw ar bob plaid wleidyddol i ymrwymo i sefydlu cronfa achub ar gyfer hosbisau plant yn nhymor nesaf y Senedd ac yn sicr, bydd fy mhlaid i'n ymrwymo i'r addewid hwnnw. Mae hosbisau plant yn chwarae rhan hanfodol ym mywydau plant a theuluoedd y mae eu byd wedi ei droi wyneb i waered gan ddiagnosis o salwch sy'n cyfyngu ar fywyd. Gyda theuluoedd yn disgrifio hosbisau plant fel eu hachubiaeth, dywedodd y mwyafrif helaeth o deuluoedd a holwyd ar gyfer yr adroddiad mai hosbisau oedd eu hunig ffynhonnell neu eu prif ffynhonnell o ofal seibiant. Fodd bynnag, gan ddibynnu bron yn gyfan gwbl ar gyllid elusennol, dim ond tua chwarter yr amser y gallant ddiwallu'r anghenion hynny. Mae'r neges yn glir iawn: mae angen mwy o gymorth ar deuluoedd a hynny ar frys. Nid yw'n ymwneud â chyllid COVID, er eu bod yn ddiolchgar amdano. Mae'n ymwneud â chreu ffynhonnell ariannu gynaliadwy fel nad ydynt yn dibynnu ar haelioni'r cyhoedd yng Nghymru am 90 y cant neu fwy o'u cyllid, yn enwedig ar yr adeg hon o ansicrwydd economaidd mawr. Ac nid yw'n ymwneud â seibiant yn unig. Fel rhan o'r ecosystem iechyd a gofal cymdeithasol, maent yn darparu amrywiaeth o wasanaethau i gefnogi plant a theuluoedd yn eu hosbisau, gartref, yn yr ysbyty, ac yn ein cymunedau, gan gynnwys gweithwyr cymorth i deuluoedd, cymorth i frodyr a chwiorydd, cwnsela profedigaeth a gofal diwedd oes. Ddydd Llun, siaradais â Nerys Davies o Lanrwst, un o nifer o deuluoedd a rannodd eu stori hosbis gyda mi. Cafodd mab Nerys, Bedwyr, sy'n bump oed, ac sydd bellach yn defnyddio Tŷ Gobaith, ddiagnosis o syndrom genetig Coffin-Siris ddwy flynedd yn ôl. Mae'r cyflwr yn achosi anabledd dysgu sylweddol ac mae'n eithriadol o brin, gyda dim ond 200 o blant yn cael diagnosis ohono yn fyd-eang. Mae Bedwyr hefyd yn cael ei fwydo drwy diwb, mae ganddo broblemau anadlu ac nid yw'n gallu siarad. Fel y dywed Nerys, 'Nid yw hynny'n ei atal rhag cyfathrebu serch hynny. Mae'n cyfathrebu llawer drwy symudiadau, felly mae'n mynd â chi i'r gegin, i'r cwpwrdd, lle cedwir ei fyrbrydau. Mae e'n ddireidus iawn.' Mae gofalu am blentyn sydd â chyflwr fel un Bedwyr yn rôl amser llawn. Fel y dywed Nerys, 'Rydych chi'n edrych ymlaen yn fawr at y pethau bach y mae pobl eraill yn gallu eu cymryd yn ganiataol, fel gallu cysgu yn y nos neu eistedd i fwyta pryd o fwyd mewn heddwch, hyd yn oed os mai dim ond ffa pob ar dost yw'r pryd, neu ddim ond i gael cwpanaid o de. Mae seibiant hosbis mor bwysig i ni fel rhieni, yn gorfforol ac yn feddyliol, oherwydd hebddo, mae teuluoedd yn mynd i wynebu argyfwng yn y pen draw. Bydd hynny'n costio llawer mwy i'r gwasanaethau cymdeithasol ac iechyd ymdrin ag ef yn y pen draw.' Fel y dywedodd wrthyf hefyd, 'Gallwn fynd i Ysbyty Gwynedd, ond mae gan Dŷ Gobaith wybodaeth arbenigol ar gyfer plant, ac mae'n wasanaeth un-mewn-miliwn i bob un ohonom.'