Tired and alone – families of disabled people tell of fight to secure NHS care

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Jack has a range of problems including cerebral palsy, epilepsy and learning disabilities
By Adam Eley & Alison Holt
BBC News

More than 100 families looking after severely disabled adults and children outside hospital, have told the BBC that the NHS is failing to provide enough vital support.

Many got in touch after a BBC report about a mother left on her own for long periods to care for her son.

The NHS says help is based on individual needs and guidelines ensure consistency across England and Wales.

However, some families describe the system as adversarial.

Only those living outside hospital with life-limiting conditions, or at risk of severe harm if they don’t have significant support, get this help from the NHS.

It is provided through a scheme called Continuing Healthcare (CHC) for adults, and its equivalent for under-18s, Children and Young People’s Continuing Care.

Cases in England are decided by NHS Integrated Care Boards (ICBs) – panels responsible for planning local health and care services. In Wales, they are overseen by local health boards.

The BBC has heard from 105 families who described serious concerns with how the two schemes are working – with most calling for reform.

Some of the families say they were assessed as eligible for funding, then the decisions were reversed. Others saw NHS support disappear when they moved from one part of England to another.

Many had read about Alex Spencer, a single mother looking after her severely disabled son, Declan. She described how a lack of support once meant she’d had to stay awake for 60 hours caring for him. Sadly, Declan died on 26 August last year.

Stories from the families included:

A young man with 24-hour needs who hasn’t received any CHC help despite being eligible since February 2023 – his parents, who first applied for support on his behalf nearly two years ago, currently provide round-the-clock care
A family who was told overnight care for their teenage child – who is non-verbal, has severe mobility issues and requires 24/7 support – would be reduced from seven down to three nights a week, without a reason being given
A single mother whose daughter’s brain injury caused multiple seizures a day. The NHS believed the girl’s needs were too high for a single nurse to provide all her care, but for significant periods of time expected the mother to be her sole carer while looking after her other children.
Five adults aged under 40 who said they felt CHC teams repeatedly tried to push or intimidate them into moving into care homes against their wishes. It can be a cheaper option for the NHS when families aren’t able to provide care

Jack, Chloe, Louise and Brad

Jack, who’s 15 and from Somerset, has cerebral palsy, epilepsy, learning disabilities and challenging behaviour.

Since 2011 he has been cared for by his adoptive parents Louise and Brad, alongside his twin sister Chloe who has cerebral palsy.

Louise and Brad have spent their savings redesigning their home to meet the children’s needs, especially Jack.

About two years ago the teenager had to have his right hip removed. It has left him immobile and often in pain.

“He can tolerate a maximum of about three hours in the same position and then you need to move him into a new position,” says Louise.

Jack with his mother Louise

Each night, either she or Brad sit in Jack’s bedroom to help when he’s in pain. Every three hours, the other one then has to get up because it takes two people to reposition him.

When the couple adopted the twins, a court ordered that council-run children’s services should provide them with 77 hours of support a month, split between Jack and Chloe. It is the equivalent of each child getting 90 minutes help a day.

The couple says Jack’s increased pain means that simply isn’t enough anymore. They are exhausted.

“It has taken a huge toll medically on both of us,” says Louise. “We’re both in our 60s, we’ve got additional health complications.”

They reached a point in November where they felt they could not go on so borrowed money to pay for two nights’ support a week.

Otherwise, Louise and Brad feared Jack would have to go back into care. Without the couple providing most of his support, it would have cost the authorities much more.

Councils provide most social care, which is means-tested, but complex support is supposed to be provided by the NHS.

The couple maintain Jack’s needs are primarily health-related.

Their local council has now agreed to pay for the two nights – a decision that will be reviewed soon by a complex care team.

Many families who contacted the BBC say they often feel caught in arguments between cash-strapped councils and the NHS over who should pay.

Louise and Brad: Caring for their children has taken “a huge toll”

Although NHS Somerset assessed Jack as needing 24/7 monitoring and supervision, it concluded he did not qualify for funding.

It said the care paid for by their council included “funding for care to be provided overnight”. The decision was upheld by a neighbouring NHS team, who did not meet Jack.

NHS Somerset told the BBC it appreciates “this has been a very worrying time for Jack’s family” and that it is “sorry if the assessment process and the outcome of the appeals have caused them additional distress”.

Factual errors and overturned decisions

Many of the families’ experiences reflect wider problems across the health and social care system, including rising costs and staff shortages.

Three patients told us they were stuck in hospital for months, because problems arranging home care meant they couldn’t leave
Some families said the money allocated didn’t cover the real cost of homecare staff, meaning they could afford less support than they had been assessed as needing
One mother said her family’s care agency failed to supply a carer on 240 nights over a 10-month period, meaning she had to stay awake throughout the night to monitor her son as well as providing care during the day

More than 33,000 adults receive long-term CHC support each year in England, while at least 4,500 under-18s receive Children and Young People’s Continuing Care, data collated by the BBC suggests.

NHS spending on long-term patients has risen significantly, partly because of the increased complexity of cases.

Some nurses, who assess patients for funding, told the BBC that time pressures and high staff turnovers were having an impact on the process.

The BBC has seen evidence of assessments containing multiple factual and procedural errors, while numerous families have claimed medical records have been misrepresented or ignored.

Even when a patient is assessed by a nurse as eligible for funding, the decision can be overturned.

Seven families say they were denied funding after an NHS panel, that hadn’t spoken to them or the patient, reversed a nurse assessor’s recommendation that they should get support.

Declan Spencer, who died last August, and his mother, Alex – their experience of NHS care prompted many similar stories

NHS England says the threshold for screening people for funding is at a low level to ensure a full assessment is done, but most who apply won’t be eligible.

It also says eligibility is determined on an individual basis in line with guidance “to ensure there is a consistent approach across the country”.

Even so, there is huge variation in the numbers found eligible – it depends on where they live.

NHS data shows that in some parts of England more than 50% of adults who apply get support. In other areas, it’s fewer than 10%.

The story is even starker for under-18s – with eligibility rates ranging from 14% to 96% in 2022-23, according to data obtained from 33 of 42 NHS Integrated Care Boards (ICBs), who run the schemes.

Margaret, Andrew and Natalie

Margaret, who’s 78, knows the impact of this regional variation all too well. She had expected her son Andrew’s round-the-clock NHS support would continue when they moved from Dorset to Yorkshire.

Andrew, 57, has severe learning disabilities, mobility issues and frequent seizures – some of which have left him unresponsive for 20 minutes at a time.

His sister Natalie has cerebral palsy after being starved of oxygen at birth and gets council support. Both require help with all their personal needs, and Andrew requires constant monitoring.

Andrew, Margaret and Natalie at their home in Yorkshire

Under the Care Act, when a family moves area, the new location must continue to “meet the adult’s needs for care and support”.

But for two months after relocating from Dorset, the family got no help at all.

“I had days when I just wanted to sit and cry,” says Margaret.

“I was having to care for both of them full-time, 24/7. I would just fall asleep in a chair whenever I sat down.”

Had she fallen ill, Andrew and Natalie would have been moved into a care home.

There is information and support available for carers – and carers of children with life-limiting conditions – through BBC Action Line

Support did slowly increase, but Margaret had to wait six months before a review of Andrew’s case took place.

The NHS team in North Yorkshire concluded his healthcare requirements were the same as in Dorset, but decided not to match the level of support.

It meant Margaret was still caring for Andrew on her own for at least 60 hours a week, and providing significant parts of Natalie’s care – including meeting her overnight needs.

“The constant battle you have [over care provision] is demoralising, and soul-destroying,” she says.

Margaret says she faces a constant battle over care provision

Since we first contacted NHS Humber and North Yorkshire ICB, it has agreed to another 16 hours support for Andrew at weekends, but problems finding care staff mean it hasn’t started yet.

It says: “We will always endeavour to provide the most appropriate support to people, within the 2022 national guidelines.”

The Department of Health and Social Care says there is always likely to be “variations in eligibility” in different parts of the country, because CHC is delivered by individual ICBs “whose populations have differing health needs and age profiles”.

However, it says that a robust process exists for raising concerns or appeals.

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7 August 2023