One from Frances Ryan , no stranger to this forum ... later edition of today's Guardian : ... ite-care.

Now disabled children and their parents are losing their lifelines.

For many families with complex needs, respite centres such as Nascot Lawn, in Hertfordshire, are a vital safety net. But such places are fighting for their lives

The battle to save Nascot Lawn – a respite centre for disabled children in Watford – is in many ways a story about some of the biggest issues of our time: vast NHS cuts, a squeezed local council, and crucial services being lost along the way. But really, it’s about something altogether more personal: ordinary mums and dads fighting for their kids.

I want to tell you about one of those mums, Angela, and her three-year-old son. Thomas can’t speak, move by himself or see, and every minute he needs care. He is fed through a tube, is doubly incontinent and has seizures when he is anxious or hears a sudden noise. Angela and her husband are in essence Thomas’s 24/7 tag team: Angela works at a charity for half the week while her husband cares for Thomas and gets their five-year-old daughter to school. For the rest of the week he puts in the hours as a civil servant and Angela, 36, takes over at home.

Thomas’s needs are so complex only his parents or specialist carers can look after him – “It’s not like I can just drop him off at his grandparents,” Angela says. When Angela has no choice but to take Thomas out with her, the seizures come: his breathing stops and he turns blue. Once she had to take him along to her emergency dental surgery. “I had my five-year-old in front of him telling me what colour he was. I’d stop the surgery to help him, then go back to it.”

Nascot Lawn is the family’s one break: four hours a week where Thomas gets safe childcare from dedicated staff in a building filled with specialist equipment, and Angela can do a food shop or have her hair cut. As she puts it: “I sort of reset my life.”

But in June, Herts Valleys clinical commissioning group (CGG) told Angela and the other parents that because of budget cuts they would have to pull Nascot Lawn’s annual £600,000 of discretionary funding – effectively closing the centre. This is the same CCG hitting the headlines in recent months for putting restrictions on non-urgent surgery for smokers and obese patients, as well as IVF fertility treatment, in a bid to claw back £45m in cuts.

This month the parents’ worst fears were confirmed: after 30 years of serving the community, Nascot Lawn will shut its doors next May. Without it there will be no respite provision locally to meet Thomas’s needs.

Around 50 severely disabled children and their families rely on the centre for daycare and overnight respite: from newborns to one aged 19. All the children are wheelchair users. Some are on oxygen. Most are tube fed. “It’s equivalent of a high dependency unit,” Angela says. “The idea we’re meant to do this 24/7 with no break …” She breaks off, struck by he impossibility of it. “It’s the sort of service that when there’s pressure budgets, it’s the first to go. But it’ll end up with families collapsing.”

When I speak to Herts Valleys CCG, it says it is “facing unprecedented and mounting pressure on NHS finances” and has to focus on services that are a statutory responsibility, such as cancer treatment, as it “can no longer afford to fund services that we have, up until now, been paying for on a discretionary basis”, including the Nascot Lawn respite centre. “[We] fully appreciate how important respite care is for those families” but provision for them “is a matter for the council”.

Meanwhile, Hertfordshire county council says it “shares the families’ disappointment” that the CCG is withdrawing funding and it’s “important that HVCCG works with us to plan the most appropriate support for these children”.

The council says it is “fully aware of its responsibility for delivering overnight short breaks and has always met these responsibilities” and is adapting other currently unsuitable respite centres, but that the CCG has the responsibility of training staff in these short-break units to meet the complex needs of the Nascot Lawn’s children.

Angela isn’t convinced. “It’s just buck-passing,” she says. “They [the CCG and council] are trying to test the edges of what they can get away with. And we’re falling between the cracks.”

The cracks are spreading nationwide. Since 2011-12, more than half of local authorities have cut spending on respite services for families with disabled children. Take inflation into account and that shoots up to 75% of councils cutting their short-break provision in real terms.

A report by the charity Contact this week warned of the “devastating impact of inadequate health and social care services” on families such as Angela’s, finding a quarter of parents of disabled children provide 100 hours of care a week to plug the gap – equivalent to three full-time jobs.

What’s happening to the safety net of Nascot Lawn is echoed up and down the country, from Beeches Bungalow in Surrey due to shut its doors next month to Merrydale in Winchester facing closure as parents battle to save it.

For the last five months Angela and the Nascot parents have launched their own fight: lobbying CCG staff based on guessing email addresses and even starting legal proceedings. When the CCG made the final decision to pull its funding, Angela and her friends were outside Herts Valleys’ headquarters with placards. She laughs at the irony of the fact Thomas was in respite care at the time. “If they’d picked any other day of the week [I wouldn’t have been able to go].”

Angela tries to make light of it but this fight is yet more effort for families already struggling. Two children have died since the campaign to save the centre started. Angela herself has anxiety and repetitive stress injury from lifting Thomas. I ask her what’s next for the Nascot families, and Angela admits part of her just wants to sleep. “I’m exhausted,” she says.

This is the reality of Britain’s austerity cuts: families with the least power and the greatest need have to fight for help.

Just one article on one forthcoming closure.

A few hundred more ... many failing to even be covered by their local rags ?

That mythical safety net ... not around yet again ?

Whose next ?