The mother of a severely disabled girl has warned the threatened closure of a much-loved respite care facility due to funding cuts could “break my family”.
Claire Bryson’s daughter Evelyn, from St Albans, is one of those who uses Nascot Lawn Respite Service in Watford, which helps young people with complex health needs.
But Herts Valley Clinical Commissioning Group (HVCCG), which gives £600,000 funding to Nascot Lawn each year, has had to drop its funding after overspending by £38m last year.
Two community wards at St Albans city hospital were also closed earlier this year after the CCG cut their funding.
To fight the facility’s closure, a group of Hertfordshire parents have set up an online petition, which currently has more than 10,000 signatures.
Ms Bryson said: “Evelyn cannot talk, walk, see, sit without the support of her wheelchair and is completely tube-fed milk, medicine and water.
“Today she remains just as she did then - like a baby, with every single thing needed to be done for her from changing her nappies, dressing her, brushing her teeth, cleaning up her vomit.
“Just over a year ago we received 30 days respite care, since reduced to 29. This has been the best thing that has happened to us as it enables my husband, Evelyn’s two younger siblings and myself to have a normal family life for almost one month of the year.
“I didn’t think we would ever be able to have a real holiday again.
“It keeps us alive and going when at breaking point. Never did I think it would come to it that this country would take care from children, let alone vulnerable disabled children. It breaks my heart and may well break my family.
“You have to know our children to understand their needs and wants and Nascot Lawn provides this. Evelyn doesn’t go to play dates or brownie camp, so Nascot Lawn is her alternative. Her place to see her friends.
“Nascot Lawn and the people there are all very familiar to Evelyn, which is important when you can’t see and have limited understanding of the world around you.”
Ms Bryson has called on HVCCG and HCC to work together, instead of putting children in the middle of a financial argument.
“Nascot Lawn is a very cheap, effective and appropriate way of providing quality respite care to children with medically complex needs.
“If they go through a long process of re-assessment and they trying to adapt another service to fit, it won’t work and will cost our children time.
“Why should these severely disabled children pay for a lack of communication between the NHS and the council?”
Petition organiser Sheri Skelton, whose son Owen uses Nascot Lawn, wrote on her blog: “Without vital breaks provided by respite services, carers can often reach breaking point where they can no longer continue and their own physical and mental health deteriorates as a result.”
HVCCG chief executive Kathryn Magson said: “Our serious financial situation means that we have to focus our spending on health services that we have a legal duty to provide.
“We appreciate this will be an anxious time for families and we are meeting with parents and carers to explain our decision and next steps.”
A council spokesman said: “We are disappointed that HVCCG has decided to cease their funding contribution to short breaks services.
“We will be working closely with partners, staff and parents to minimise the impact of this decision.
“HCC will carry out an assessment of children currently attending Nascot Lawn to understand whether new or additional social care support is required. In the short term we will recruit additional staff to carry out these assessments.”
The petition can be found at www.change.org/p/save-nhs-nascot-lawn-children-s-respite-services
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