Written by Adam Ely and Alison Holtbbc news
BBCMore than 100 families caring for severely disabled adults and children outside of hospital told the BBC that the NHS was failing to provide enough vital support.
Many people contacted me after hearing the BBC report. Mother left alone for a long time To take care of her son.
The NHS says support will be based on individual needs and guidelines will ensure consistency across England and Wales.
However, some families describe the system as hostile.
This support from the NHS is only available to people who live outside of hospital with a life-limiting condition, or who are at risk of serious harm without adequate support.
This is provided through a scheme called Continuing Health Care (CHC) for adults and an equivalent scheme called Continuing Care for Children and Young People (CHC) for under-18s.
Cases in England are determined by the NHS Integrated Care Board (ICB), which is responsible for planning local health and care services. In Wales, it is supervised by local health boards.
The BBC heard from 105 families who expressed serious concerns about how the two schemes were working, with most calling for reform.
Some families say they were assessed as eligible for funding, but the decision was later reversed. Some people have seen their NHS support disappear when they move from one part of the UK to another.
Many have read about Alex Spencer, a single mother who takes care of her severely disabled son, Declan. She said she once had to stay awake for 60 hours to take care of him because she had no support. Sadly, Declan passed away on August 26th last year.
Family stories included the following:
- Despite being eligible since February 2023, the young man in need of 24-hour care has not received support from CHC – his parents, who first applied for support on his behalf about two years ago. Currently providing care 24 hours a day
- A family whose non-verbal teenager, who has severe motor disabilities and requires 24/7 support, has night care reduced from seven days a week to three days a week, with no reason given. I thought it would be.
- A single mother suffered multiple seizures a day due to her daughter's brain injury. The NHS believed that the girl's needs were too great for a single nurse to provide all of her care, but for a considerable period of time her mother was the only one caring for other children. I expected her to be my caregiver.
- Five adults under the age of 40 said they felt the CHC team repeatedly forced or threatened them to move into a care home against their wishes.May be a cheaper option for the NHS if family members are unable to provide care
Jack, Chloe, Louise, Brad
Jack, 15, from Somerset, has cerebral palsy, epilepsy, a learning disability and behavioral problems.
Since 2011, he has been cared for by his adoptive parents Louise and Brad, along with his twin sister Chloe, who has cerebral palsy.
Louise and Brad used their savings to redesign their home to meet the needs of their children, especially Jack.
About two years ago, the teenager had to have his right hip removed. This left him immobile and often in pain.
“He can endure up to about three hours in the same position, but then he has to be moved to a new position,” says Louise.
Every night, either she or Brad sit in Jack's bedroom and help him when he is struggling. Every three hours, she has to stand up at least once. Because she needs two people to change positions.
When the couple adopted the twins, the court ordered the council-run child welfare service to provide Jack and Chloe with 77 hours of support each month, split between them. This equates to each child receiving 90 minutes of her assistance per day.
The couple say Jack's increasing pain means it's not enough anymore. they are exhausted.
“It took a huge toll medically for both of us,” says Louise. “We are both in our 60s and have additional health complications.”
In November they felt they could no longer continue and went into debt to pay for two nights a week of support.
If they didn't, Louise and Brad feared Jack would have to go into care again. The authorities' costs would have been even higher if the couple had not provided most of his support.
Councils provide most social care and are means-tested, but complex support is to be provided by the NHS.
The couple maintains that Jack's needs are primarily health-related.
Their local council has now agreed to pay for the two nights, and this decision will soon be reviewed by the complex care team.
Many families who contacted the BBC said they often felt caught up in arguments between cash-strapped councils and the NHS over who should pay.
NHS Somerset assessed Jack as requiring 24/7 monitoring and supervision, but concluded he was not eligible for funding.
It said the care paid for by the council also included “funding for care provided at night”. This decision was supported by a nearby NHS team who did not meet Jack.
NHS Somerset thanked the BBC: “This has been a very worrying time for Jack's family” and added: “We apologize if the outcome of the assessment process and appeal has caused them further distress.” No,” he said.
Factual errors and overturned decisions
Many of the families' experiences reflect broader issues across the health and social care systems, including rising costs and staffing shortages.
- Three patients said they were unable to leave the hospital due to problems with home care arrangements and were confined to the hospital for several months.
- Some families said the allocated funds did not cover the actual costs of home care staff, meaning they received less support than was determined to be necessary.
- One mother said her family's care agency was unable to provide a caregiver for 240 nights over 10 months, so she had to stay up all night to check on her son as well as provide daytime care. Ta.
More than 33,000 adults receive long-term CHC support in the UK each year, and at least 4,500 under-18s receive continuing care for children and young people, according to data compiled by the BBC.
NHS spending on long-term patients has increased significantly, in part due to increased case complexity.
Some nurses who assess patients for funding told the BBC that time pressures and high staff turnover were affecting the process.
The BBC has seen evidence of the assessment containing multiple factual and procedural errors, while a number of families claim medical records were misrepresented or ignored.
Even if a patient is assessed as eligible for funding by a nurse, that decision can be overturned.
The seven families say they were refused funding because the NHS panel did not consult them or the patients and overruled a nursing assessor's recommendation that they should receive support.
family photoNHS England says the criteria it uses to screen people for funding is set at a low level to ensure a thorough assessment, but most applicants do not qualify.
It also said eligibility would be determined on an individual basis, in line with guidance “to ensure a consistent approach across the country”.
Still, the number of people covered varies widely and depends on where you live.
NHS data shows that in some parts of England, more than 50% of adults who apply receive support. In other regions it is less than 10%.
Data from 33 of the 42 NHS Integrated Care Boards (ICBs) that run the scheme shows the situation is even worse for young people under 18, with an eligibility rate of 14% in 2022-2023. It is said that the rate ranges from 96% to 96%.
Margaret, Andrew and Natalie
Margaret, 78, knows the impact of this regional difference all too well. She expected her son Andrew's 24-hour NHS support to her to continue when she moved from Dorset to Yorkshire.
Andrew, 57, has severe learning disabilities, movement disorders and frequent seizures, which can leave him unresponsive for 20 minutes at a time.
His sister Natalie, who was deprived of oxygen at birth and has cerebral palsy, is supported by the city council. Both have to take care of all their personal needs, and Andrew needs to be constantly monitored.
The Long-Term Care Act states that if a family moves from one area to another, the care and support needs of the adult must continue to be met in the new location.
But for two months after moving from Dorset, the family had no help at all.
“There were days I just wanted to sit and cry,” Margaret says.
“I had to take care of them full-time, 24/7. I fell asleep as soon as I sat in the chair.”
If she had become ill, Andrew and Natalie would have been moved to a care home.
Support gradually increased, but Margaret had to wait six months for Andrew's case to be reviewed.
North Yorkshire's NHS team concluded that his medical requirements were the same as in Dorset, but decided that the level of support was not matched.
This means Margaret is still caring for Andrew herself for at least 60 hours a week and providing a significant part of Natalie's care, including meeting his nighttime needs.
“The constant battle you have [over care provision] It’s demoralizing and soul-destroying,” she says.
Since we first contacted NHS Humber and North Yorkshire ICB, they have agreed to provide Andrew with an additional 16 hours of support at the weekend, but this has not yet begun due to difficulties in securing care staff. yeah.
“We will always strive to provide the most appropriate support to our citizens within the 2022 national guidelines.”
The Department of Health and Social Care says there will always be “variation in eligibility” across regions of the country as CHCs are provided by individual ICBs with “different population health needs and age profiles”.
However, it says there is a robust process for raising concerns and appeals.
Were you affected by the issues raised in this story? Share your experience by email haveyoursay@bbc.co.uk.
If you would like to speak to a BBC journalist, please include your contact number. You can also contact us by:
If you are reading this page and cannot see the form, you will need to access the mobile version. BBC website Please submit any questions or comments or email us at: HaveYourSay@bbc.co.uk. When applying, please enter your name, age, and location.
Sign up for our morning newsletter Get BBC News in your inbox.
