Families in Wales caring for a child with a life-limiting condition need more respite breaks, a new survey has found.
Ty Hafan and Tŷ Gobaith, children’s hospices in Wales, joined forces earlier this year to ask the children, young people and families in their care what they needed to live well and whether they were receiving enough support.
The study found that 75 per cent of respondents would benefit from more respite provision at the hospice – with both longer and more frequent stays.
Out of the 133 respondents, 94 per cent said respite care is essential, and 85 per cent said the hospice was their only source of respite. Additionally 85 per cent said that the hospices are their main or only source of support, including respite.
Other key findings include:
- Young people (aged 18 to 25) leaving hospice services need more support. Over 75 per cent of young people identified that access to a break away was the most valued service provided by the hospice.
- Services are not always easy to access. 73 per cent face barriers when it comes to accessing hospice services, with almost 60 per cent reporting that respite is only sometimes available when needed. 72 per cent of families have to travel more than 30 minutes to access respite services.
- The impact of providing complex care on family life. 20 per cent said they felt isolated, and 45 per cent said life is stressful.
- Bereavement support and counselling make a difference. Over 80 per cent of bereaved families felt that the support they had received did meet their needs, but this leaves around 20 per cent left feeling that they needed more
Families are experiencing serious financial challenges. 87 per cent of families identified that they have experienced financial hardship. 51 per cent of families have an annual income that’s under £25,000, and 21 per cent of families rely on less than £12,000 a year.
Addressing the needs of families
Andy Goldsmith, Chief Executive Officer at Tŷ Gobaith, commented: “The report presents, very loudly and clearly, in their own words, the most important concerns of families who have children with life-limiting conditions.
“As children’s hospices we want this report to be a starting point for meaningful discussion with Welsh Government, health boards, local authorities and other partners. The measure of any nation is how it treats its most vulnerable people - we want Wales to be proud of what we can offer children and young people with life-limited conditions.
“This isn't a report that can just go on a shelf and gather dust. These are real life voices asking for help, and those voices will continue to call out for that help until these matters are addressed.”