DESPERATE STATE OF CARE PROVISION IN UK –a catalogue of unmet need

Carers UK banner on a march for disability rights

PEOPLE with care needs are having to turn down support packages because they cannot afford them.

Backdated bills for care arrive without any explanation of how the figures were reached. Millions of older and disabled are denied care because local authorities cannot meet the demand.
These are some of the issues revealed in a stark report from the charity Access Social Care.
Access Social Care published its second annual ‘State of the Nation’, revealing the desperate state of social care provision in the UK from information provided by its members, including Royal Mencap Society, Age UK, Carers UK, Independent Age and RNIB.
Access Social Care is a charity which provides free legal advice for people who need social care.
It introduces its report saying: ‘Every day, millions of older and disabled people are denied the social care they need. Most local authorities cannot meet the growing demand for care, and none are confident they can meet their legal duties in the future.
‘The Association of Directors of Adult Social Services reported in May 2022 that 6-in-10 councils were having to prioritise assessments and are only able to respond to people where abuse or neglect is highlighted, for hospital discharges or after temporary residential care support for recovery and reablement.
‘The report also highlighted that over half a million people are waiting for assessments, reviews or care and support to begin.’
The report draws together over 74,000 separate data points through a bespoke processing pipeline built and maintained in collaboration with Owen Bowden, Insight & Analytics Lead at Royal Mencap Society.
Access Social Care report that their members in the year 2021/22 compared to 2019/20, saw a rise of 74% in queries about care needs and processed 88% more enquiries needing specialist legal advice.
The number of enquiries about social care needs assessments has risen by 229% in the same period.
The organisation reports that the issues being reported to helplines are of growing concern against the backdrop of more financial savings by local authorities most of whom continue to need significant cuts to be made to their adult social care budgets.
There are real concerns around the lack of information informal carers are receiving about their rights as well as a lack of support for themselves and those that they care for. Common queries include:

  • Queries about assessments, both for the person with care and support needs and their family carer;
  • Not enough hours of support or losing support entirely (for example when day centres are closed);
  • Cuts to services, including respite services;
  • Delays in assessments and delivery of care and support.

An increasing number of carers are being told by their GP that they are not carers or do not qualify for carer support, or for things like priority access to the Covid-19 vaccine. The impact of this is huge and many carers are left at breaking point.
Carers UK states: ‘Unpaid carers are at breaking point, exhausted after more than two years of caring with little or no outside support.
‘The impact on a social care system that was already on the brink of collapse before the pandemic means even more pressure on even more families who are propping up a chronic shortage of services.’
New research by Mencap has also revealed widespread loneliness amongst people with a learning disability and almost a third (32%) are struggling with their mental health, with many people still stuck at home in the aftermath of the pandemic because of reduced social care support.
Mencap is urging decision-makers to act now to provide community support to prevent further isolation and irreparable damage to the mental health and wellbeing of people with a learning disability.
‘We also need to see longer-term funding targeted at supporting decent pay rises for social care workers, many of whom are paid far too little and will be hit hardest by the ever-increasing cost of living.’
In response to the May 2022 Association of Directors of Adult Social Services (ADASS) survey, Age UK states: ‘These new figures make for grim reading and behind them are real older and disabled people whose lives are being sadly diminished by lack of essential support. Meanwhile, hundreds of thousands of older and disabled people are having to put up with a ramshackle service, with more than half a million unable to get even to first base by having an initial assessment.
‘The government’s care reforms start to come in next year (but) their changes really only relate to how much financial support people get in paying for their care, they won’t do anything to expand the help available or improve its quality and reliability.
‘After all, what’s the point of having the reassurance that you won’t face unlimited bills for your care, if there’s no one to provide it for you in the first place?’
Access Social Care report a case study: ‘B had autism and learning disability and was supported by Access Social Care. They lived in supported living accommodation with three other people. They had limited understanding of the care and support process and in the past, they had always been supported by their Mum during assessments or reviews.
‘Their Mum had become increasingly physically unwell and consequently could no longer support B at a forthcoming assessment. B’s care provider warned the social worker that B’s Mum could no longer support B and that an advocate was needed.
‘The social worker attended anyway and carried out an assessment of B with only his care manager present. The assessment stated that B could cope with a reduction in support hours and lost 10 hours of 1:1 support. We supported B to secure a new assessment to be carried out with support from a statutory advocate.’
The assessment and eligibility process is one of the most important elements of the care and support system. The process must be person-centred throughout, involving the individual and those supporting them to have choice and control.
Access Social Care are concerned that the increasing number of enquiries about assessments, coupled with the delays people are already facing, points to a system on the verge of collapse.
500,000 people are awaiting assessments or care and support provision alone.
Now, 125,000 self-funders will want to enter the system to ensure the cost of their care is attributed to the lifetime cap on care costs of £86,000 due to be implemented from October 2023.
In some cases, the local authority says it simply does not have enough staff to carry out assessments. In one recent case, we spoke with a person who had already been waiting for four months for an assessment and had been told they were waiting to be allocated a social worker.
They were told it would be a long wait, because there were 600 cases and only seven social workers.
The Association of Directors of Adult Social Services reported in May 2022 that almost 170,000 hours a week of home care could not be delivered because of a shortage of care workers during the first three months of 2022. That is a dramatic seven-fold increase since Spring 2021.
Because a person who receives care and support outside a care home will need to pay their daily living costs such as rent, food and utilities, the charging rules must ensure they have enough money to meet these costs.
After charging, a person must be left with the minimum income guarantee (MIG), including ensuring that they keep enough money to cover the cost of meeting disability-related costs.
Enquiries about charging include:

  • How local authorities should calculate the amount someone should contribute;
  • Disability related expenditure, the amount a local authority should disregard in calculating care charges;
  • Not being able to pay for care charges: having to choose between care or a full food shop;
  • Being invoiced a large, backdated sum for care and support without understanding how the local authority had arrived at that figure.

Although the MIG has been increased, the increase was calculated in October 2021 when the rate of inflation was 3.8%. With inflation now standing at 7.8%, and expected to reach at least 10% this year, it is extremely likely that individuals paying towards their care will not have enough money left over to buy the essentials.
Alongside this, our research indicates that many local authorities are seeking to use charging as a way of balancing their adult social care budget.
Many enquirers report that their true Disability Related Expenditure is not considered by their local authority, leading to social care charges which can be wholly unaffordable.
People in this situation face a bleak prospect of choosing to pay for care or pay for their food, as reported by several of our member organisations.
We know of several people who had to hand back their support packages as they cannot afford to pay for them.
The number of people contacting our members for advice on how to access specialist legal support increased by 88% in 2021/22 compared with 2019/20.
People may need specialist legal support to understand and enforce their legal rights. Against the backdrop in this increase in need, there has been a staggering 77% decrease in people accessing community care legal aid since 2010.
The research shows that accessing legal aid for community care law has become increasingly difficult because it is loss-making for law firms.
Lastly, Access Social Care has been carrying out research into local authority budgets and the challenges faced across the country for local authorities delivering services in challenging financial circumstances.
Savings targets for adult social care are common, with local authorities in England identifying at least £48m of adult social care savings targets in 2021/22 alone.
Access Social Care is continuing to monitor adult social care savings and efficiencies into 2022/23.