UK deaths while waiting for care package tops 1,300 over past year, new research reveals

At least 1,300 people across the UK died waiting for a social care package to start during the last financial year, according to a new study.

The research by the BBC’s Shared Data Unit also found large disparities in the provision of care depending on where people live.

In some local authority areas, patients can be assessed on the same day as referral, while the average wait is over a month in a third of the UK.

Only 83 out of the 211 authorities (39%) collected data in a way that could be retrieved under the Freedom of Information Act. Most of the authorities that replied (59%) did not answer the questions fully but provided at least partial responses.

The report comes just days after data from Public Health Scotland showed that as of July 3 this year, there were 3,964 people in Scotland who had been assessed as needing help and who were waiting for a package of care at home to be put in place.

In addition to this, an estimated 6,253 people were waiting for a social care assessment.

According to the BBC data, the median wait time for an assessment in 21/22 ranged between zero days in Dundee City to 68 days in the Midlothian council area.

But Midlothian Health and Social Care Partnership say the 68 day figure applies to completion – and not commencement – of assessment.

Morag Barrow, director of health and social care at Midlothian Health and Social Care Partnership, said: “The following year this reduced to 48 days, and we except to see a further decrease in figures going forward this year

“In 2021 to 2022 there was an increase demand in referrals across our adult social care services by 11% which is significant for a small partnership.”

The wide-ranging BBC Shared Data Unit study also found evidence of a troubled domiciliary care system – where people receive help in their own home.

More than 13,000 home-care packages were handed back to councils over the past two years – largely because companies lacked the staffing capacity to fulfil them.

The unit asked 206 upper-tier councils in the UK and the five health and social care trusts in Northern Ireland whether any care contracts the authority had awarded for individual domiciliary care had been handed back to them because the private provider could no longer fulfil the obligations of its contract.

A total of 122 responded with at least partial data between the 2021-22 and 2022-23 financial years.

In 21-22, 68% of councils handed back at least one contract that year. In total there were 7,077 occasions where a person saw their care contract handed back to the council, equating to 79,934 hours of care per week.

The study also found that at least 1,399 people died waiting for their local authority to arrange a package of care for them in 22-23 alone.

Age UK said this was leaving “substantial numbers of older people” experiencing disrupted care, which it said was “distressing”.

The result of delays across the system, it said, was leaving older people dying “before ever receiving the help they need”.

Caroline Abrahams, charity director at Age UK. “It’s valuable to see all this data pulled together and it tells a pretty consistent story: that of a care system struggling to meet growing levels of need overall, but one which is doing better in some parts of the country compared to others.

“The extent of the postcode lottery the data reveals is unacceptably large, because it means your chances of getting a timely care assessment, for example, vary enormously according to where you live, and that’s just not fair on all those losing out, some of whom are sadly dying before ever receiving the help they need.”

The UK Department for Health and Social Care said it was investing £7.5bn into social care over the next two years.

But the National Care Association and the Local Government Association said the system was struggling through years of under-investment.

In order to receive funding for a care package in the UK, individuals need to be assessed for eligibility by their council.

Once they have been deemed as eligible, a placement – whether that be a bed in a residential care home, or care in their own home, can be found for them depending on their needs.

The council pays for all, part or none of that care depending on a means assessment of the individual.

A Scottish Government spokesperson said: “We are committed to working with all partners to improve social care services and ensure a career in social care is attractive and rewarding. However, the sector faces many staffing challenges that are exacerbated by Brexit, funding challenges and cost-of-living crisis.

“We are continuing to work towards our commitment to increase spend in social care by 25% by the end of this Parliament, an increase of over £840m.

“This is underpinned by our commitment to a National Care Service that ensures consistent, high quality social care support and community healthcare that meets peoples’ needs across the country.

“We will continue to engage with local government, trade unions, health and social care workforce and people with lived experience on designing the new care service.”

It has been 12 years since the Dilnot commission put forward proposals to end the “postcode lottery” of care provision in the UK.

Since then, there have been various reforms to the system in England including the 2014 Care Act and the 2022 Health and Care Act, the latter of which will give the Care Quality Commision (CQC) formal powers to audit council care services in England, starting in September this year.

But campaign groups say the issue of understaffing across the system has never been properly addressed.

Last year, the House of Commons Health and Social Care Committee found the sector was facing the biggest workforce “crisis” in its history – and would need to find some 490,000 more employees by the early part of the 2030s.