Hospices For Children Under Threat : Austerity Trying To Take Another Piece Off The Board!

**Cash crisis forces children’s hospices in England to limit respite care.

Government accused of reneging on pledge to increase grants as funding and corporate donations fall.**


Children’s hospices in England are in crisis and have started turning away families because of a lack of government funding and falls in corporate donations, charities have warned.

Shooting Star Chase, which runs two children’s hospices in the south-east, will stop offering respite care from November to half the 500 local families who need it. “We are going to focus the majority of our respite care on the 250 children we have identified with the shortest prognosis,” said the chief executive, Nigel Harding.

The charity has had a 25% real- terms cut in its government funding since 2008, he said, and has been eating into its reserves since 2012. “Having to not offer services that we know are vital to really vulnerable families is very difficult for me and my staff. Respite care is a lifeline for these families. It gives parents a break. There is a chance that, without it, families will be torn apart.”
The campaigning charity Together for Short Lives will publish a report this week criticising the government for quietly reneging on its promise last December to increase its annual grant to children’s hospices to £25m. Children’s hospices in England, the report will say, now face a £13m funding gap because the government has repeatedly failed to increase funding when medical treatments advance.

The charity’s chief executive, Andy Fletcher, said: “The government’s contribution hasn’t kept pace with the cost of delivering hospice care. Children with life-limiting illnesses are living longer because we’re better at diagnosing and treating their conditions.”

He confirmed that children’s hospices nationwide are facing a “very, very challenging” funding crisis, adding that the majority are looking closely at what services they can cut this year.

Stephanie Nimmo’s daughter, Daisy, was born prematurely with a rare genetic mutation that damaged her brain and intestines. She couldn’t eat and needed complex care 24 hours a day. Respite care from Shooting Star Chase allowed Nimmo to catch up on sleep, spend time with her three other young children, and after her husband was diagnosed with terminal cancer care for him, too.

She said: “Our family dynamic fell apart. It was horrific. If the hospice hadn’t looked after Daisy for me when [my husband] was dying, I don’t know what I would have done.” Daisy died, aged 12, shortly after her father.

The Birmingham-based Acorns Children’s Hospice announced this month that it was shutting its Walsall branch after 20 years of helping more than 200 children with life-limiting illnesses.

Harding is calling on the government to increase its annual grant to children’s hospices, and said if the cuts he makes this year are not enough next year Shooting Star Chase would also be forced to consider closing a hospice. “This isn’t just affecting us. This is a national issue. There’s a crisis in the sector that’s been heading down the tracks for some time.”

Corporate donations to medium-sized charities such as Shooting Star Chase have fallen by more than £250,000 a year as companies “sit on their hands, waiting for Brexit and saving their cash”, he said. The charity receives government funding of less than £700,000 a year, a sum that has gone up by just £40,000 in 11 years, and must raise more than £10m of funding from donations. It made 12 staff redundant last year and Harding would not rule out further redundancies: “Quite honestly, I don’t know what the future holds for us.”

For Harding, hearing candidates in the Conservative leadership talk about tax cuts was the last straw. “If they can fund tax cuts, what about the dying? Our society is judged by the way it treats its most vulnerable. Who is more vulnerable than children with life-limiting illnesses and severe disabilities?”

Last month, he wrote to all the MPs in his catchment area, including Jeremy Hunt, Michael Gove, Dominic Raab, John McDonnell and Philip Hammond, warning them about the cuts at the hospice. Only Vince Cable and the Labour MP Siobhain McDonagh replied.

A spokesperson for the Department of Health and Social Care said: “Hospices have always been part-funded by local NHS organisations, and local areas are responsible for ensuring services they commission meet the needs of their communities.

The NHS long-term plan prioritises improvements in children’s palliative care, and the NHS has committed to increase funding for these services, including hospices, by up to £7m a year.”


Soon families with children with life limiting conditions will be in the same desperate situation as families of young adults with life limiting conditions. Always makes me think of Eun and family, who used to post on here.

One of my ex-pupils is now a young adult. She has severe uncontrolled epilepsy. Her Dad sits up with her most of the night ( she has cerebral palsy so her athetoid movements make use of a seizure sensor impossible,) her Mum then takes over and Dad grabs a few hours sleep before going to work. She is extremely difficult to Hoist because of her movements and lack of understanding, she thinks the sling is somewhere to jig about.

Before you mention CHC funding Chris, her family apply at regular intervals. At least she will get a place in the 19 to 25 PMLD department of her special school.


Having posted the above article … topping and tailing it … sat back and cringed at just what I had posted …
CHC was not at the forefront of my thoughts … too blocked by sheer anger … anger at society … for allowing
this to happen !

As posted on the main FOOD BANK thread , children … the only true , innocent , victims in this world.

None of them asked to be born !


Childrens services are not perfect but at least they exist.

On paper , perhaps.

Autistic and mentally handicapped children … a different story :




Education … SEND ?


Pupils with special educational needs to stage funding protests.

Children and families will hold marches this week in 25 towns across England.

In both areas , rarely do the horror stories reached the mational newspapers.

( If they do , I’ll post them ! )

Mental health ?

Even by current standards of NHS and social care , like stepping back in time a few decades ???

Several regulars on this forum will testify to the current state of affairs out there.

For many , it is a constant battle from the moment their child is born … with the added worry of what happens when they ,
themselves , are no longer capable of caring.

Many true " From the cradle to the grave " carers !


services for children with autism and learning disabilities, may be poor; but believe me it is worse post 25.


… which is why I continue to surf into leading news sites for articles to post.

Post 25 ?

The last , major report … the equivalent of the Select Committee Report for us back in 2008 … was in 2015.

97 pages worth … in .pdf format … highly recommended reading for any reader with a specific interest in this issue :


( I have added a thread to the MENTAL HEALTH section … highlighting it … PERHAPS A STICKY … and one for that
Report on us … 7th. TIME OF ASKING ? https://www.carersuk.org/forum/support-and-advice/all-about-caring/select-committee-on-work-and-pensions-fourth-report-2008-our-bible-also-our-jailer-time-for-a-jailbreak-36397?hilit=select%20committee )

Major report courtesy of the National Autism Society … .pdf format … not published on this forum before now ???

**Redirect Notice( Should open by asking you to either save or open with Adobe reader … truly massive document ! )_

Is there a " D " notice … or something similar … preventing such articles being published ?

My finger tips are somewhat tied … unless readers cheap in and send me leads.

The news is out there … is it only me that reads articles relating to CarerLand … and then takes the time to publish them
in full … topping and tailing … for the benefit of any reader who wants to read it ?


In Victorian Times , the word BEDLAM springs to mind.

And a road from my youth in The Smoke … COLNEY HATCH LANE.

Places best left to the history books … and those that are read the least ?


**Children’s hospices " To shut if NHS does not increase funding. "

Children’s hospices in England will be forced to cut services or shut unless the NHS increases its funding, a charity has warned.**


Together for Short Lives, which helps terminally ill children, highlighted a “dangerous cocktail” of higher costs and a drop in state funding.

Its report examined funding for 27 of the 34 children’s hospices in England.

But NHS England said funding for children’s end-of-life care is “going up every year”.

According to Together for Short Lives, children’s hospices in England each spend an average of £3.7m per year - which works out as a total annual spend across the country of £125m. Their spending has increased by 4.5% since 2016/17, it said.

But the percentage which the state contributes has fallen from 27% to 21% in five years, the report said - and hospices have been forced to use their reserve funds or stop services.

‘Shouldn’t depend on charity donations’

One of the hospices, Acorns in Walsall, West Midlands, has said it will have to close later this year unless it can raise more than £1.5m.

If it closed, it would mean more than 200 children would lose vital support or be forced to travel long distances, and 70 jobs would be lost.

Another hospice, Forget Me Not in West Yorkshire and north Manchester, said the lack of council and NHS funding “has a huge impact” on the care they can provide.

“We have two hospices: we cannot fully open our Bury hospice yet despite having amazing facilities and families desperate to access them because it receives no funding from the NHS,” said chief executive Luen Thompson.

"Our Huddersfield hospice receives less than 3% in statutory funding of the £4 million it needs to run.

“Our offer to families shouldn’t depend on how much we raise at a bucket collection or how much bric-a-brac we sell in one of our shops.”

The head of Together for Short Lives, Andy Fletcher, said the situation at Acorns could be “just the tip of the iceberg”.

“It is simply not sustainable to expect specialist children’s palliative care services provided by children’s hospices to be funded by charity reserves and the generosity of the public,” he said.

The charity wants the NHS to increase the Children’s Hospice Grant from £12m in 2019/20 to £25m per year.

Mr Fletcher also said NHS funding was “patchy”, with the research showing one hospice receiving 48% of its charitable expenditure from the state in the last financial year but another getting just 7%.

And one in six hospices said they had received no funding from their local clinical commissioning groups in 2018/19.

An NHS England spokeswoman said: "NHS funding for children’s end of life care is going up every year and is set to more than double within the next five years, with up to £25m going in to care as part of the NHS Long Term Plan.

“We are working with local health groups - including councils which of course have an important role to play in these services - and Together for Short Lives to provide the kind of support that children and their families want.”

The government has been approached for comment.

**Hebden Bridge family supports calls for more funding to save children’s hospices from closure.

A Hebden Bridge family whose daughter received care at Forget Me Not Children’s Hospice has joined the call on NHS England boss to make good his promise to properly fund children’s hospices.**


NHS and local council cuts are hitting lifeline care for seriously ill children, a survey of 27 children’s hospices in England carried out by charity Together for Short Lives has shown.

The news comes as NHS England chief executive Simon Stevens’ commitment to protect and increase children’s hospice funding is not being met.

With proposals already having been made to close Acorns Children’s Hospice site in Walsall, Forget Me Not Children’s Hospice, which helps children and their families in Calderdale and beyond, is worried that this could be the tip of the iceberg.

Thea Walker from Hebden Bridge died in February this year aged two years and nine months as a result of Niemann-Pick disease type A, a rare life-limiting condition. She received palliative care at Forget Me Not Children’s Hospice. Thea’s condition meant she had to be fed through a tube, relied on a wheelchair and wouldn’t learn to talk.

Her mother Gabriella Walker said: “With the support of Forget Me Not we felt less alone, more empowered. Their help gave us the confidence and skills to pack as much fun and life into the few short years Thea had as we could, as well as maintain a ‘normal’ life, with work and school, birthday parties and holidays.

“I dread to think how different things could have been if Forget Me Not had not been there. And of course as Thea’s disease progressed we relied more on the medical support they provided, which was invaluable.”

“I was shocked when I learnt how little Forget Me Not and other hospices like them receive from the NHS and local councils. They made sure that my family spent those years living as best we possibly could, focused on enjoying the time we had together. Surely every family deserves the same?”

Gabriella Walker has written an open letter to Health and Social Care Secretary Matt Hancock, calling on him to make sure Simon Stevens honours his commitment to protect and increase children’s hospice funding.

Forget Me Not is joining Together for Short Lives calling on NHS England to keep its promise to protect the Children’s Hospice Grant – and go further by increasing it to £25million per year.

NHS England chief executive Simon Stevens had announced in December that, over the next five years, up to £7million additional funding would be made available to children’s hospices each year on top of the existing £11million Children’s Hospice Grant, if CCGs also provide additional match funding.

However, NHS England subsequently rowed back on this promise in its Long Term Plan. This stated that the additional funding will also be available to other, non-hospice palliative care services.

This was later confirmed in Parliament by Care Minister Caroline Dinenage. While NHS England has increased the grant to £12million for 2019/20, she refused to commit to continuing it exclusively to children’s hospices beyond this year.

The minister said the Department of Health and Social Care would only “expect hospices to be significant beneficiaries of the additional funding” set out in the Long Term Plan – and that “simply increasing the hospice grant is not a solution”.

Luen Thompson is Chief Executive of Forget Me Not Children’s Hospice which provides services to more than 600 families across West Yorkshire and North Manchester.

She said:“The lack of NHS and local council funding has a huge impact on the care and support we are able to provide to the families who need it.

“Our offer to families shouldn’t depend on how much we raise at a bucket collection or how much bric-a-brac we sell in one of our shops. Increased NHS and local council funding would reassure families that the services they rely on at the most difficult times in their lives will be there when they need them.”

This Children’s Hospice Week, Forget Me Not is joining Together for Short Lives in calling on the public to sign Gabriella’s letter. This, alongside the full report of Together for Short Lives’ survey findings, is available at > Statutory Funding for Children's Palliative Care, Together for Short Lives