Written evidence from Access Social Care (ASC) (HCS0035)

Submitted by Sarah Battershall (Director of Quality and Practice at United Response), Ed Brown (Head of Adult Care Compliance and Development at Father Hudson’s Care), Jackie Fletcher (Group Director of Quality, Public Affairs & Marketing at Dimensions), Edel Harris OBE (Chief Executive Officer at Royal Mencap Society), Hannah Hewish (Legal Strategy Manager at Access Social Care), Jo Land (Chief Executive at Avenues Group), Sarah Maguire (Chief Executive at Choice Support), Seb Moh (Adult Services Operations Director at Macintyre), Jeff Parry (Director of Operations at Milestones Trust), and Sara Thakkar (Chief Executive at Camphill Village Trust.

Background

Access Social Care (ASC) is a new charity working to provide access to justice for people with social care needs. We act as a central hub for social care advice, providing advice and casework to beneficiaries in social care provision. We operate in the early legal help space, providing casework support up to and including pre action letters, advising hundreds of people since our launch in April 2020.

We have extensive experience advising on care and support in various types of care settings. Our operating model allows us to obtain in-depth insight into current trends and challenges within care settings, regularly liaising with frontline care managers and senior executive teams. We collaborate with the wider sector, chairing a national helplines data sharing project which collates insight from tens of thousands of callers. Our State of the Nation report was published in May 2021[1]

Membership

We make this submission in conjunction with the following members, representing over 36,000 adults with social care needs:

Royal Mencap Society
Choice Support
United Response
Dimensions
Camphill Village Trust
Macintyre
Milestones Trust
Father Hudson’s Care
Avenues Group

Response

Our response to this call for evidence addresses adults aged 18 or over and their unpaid adult carers in England only.

1. What human rights issues need to be addressed in care settings in England, beyond immediate concerns arising from the COVID-19 pandemic?
   
   As the annual Care Quality Commission State of Care report highlighted in October 2021, the pandemic has further exposed and exacerbated existing inequalities[2], many of which we believe raise significant human rights issues. Many of these inequalities were already worsening against the backdrop of ten years of austerity, including crippling local authority budget cuts and welfare benefits reform. Human rights are often the critical pillar on which many individuals can rely on to ensure access to and quality of social care. We set out below a summary of key concerns on specific convention rights, although many of our cases involve multiple potential human rights breaches.

(a) Article 2 Right to life

Concerns around potential breaches of Article 2 arise in a variety of cases. An increasing amount of community care cases involve ongoing failures by a local authority to safeguard the life of an adult who is disabled. This can be due to multiple complex issues, including self-neglect, potential abuse, or a lack of appropriately funded hours to meet eligible need, putting a person’s health, wellbeing, and life at risk.

RB is a young adult who attended a specialist school until the age of 16. They had a series of subsequent placements in supported living accommodation, all of which broke down due to ongoing behavioural and addiction issues which were not adequately addressed by their funded level of care. We raised safeguarding concerns with the local authority. Their response was that RB had capacity to make unwise decisions. RB eventually became homeless, despite desperate attempts by their mother to secure further support to safeguard them. Living on the streets, RB became target for local drug gangs. We supported RB to secure urgent council accommodation pending further needs assessments under the Care Act 2014. We raised multiple safeguarding concerns with the local authority about the urgent nature of risk to RB. The local authority did not put in place adequate interim support pending assessment, and RB again fell victim to local drug gangs and “mate crime”. RB became suicidal, making attempts on their life. RB was eventually admitted to hospital. 

We work closely in partnership with Royal Mencap Society, providing casework support to individuals inappropriately admitted to Assessment and Treatment Units. These people are often autistic or have a learning disability. Sadly, some die in these Units as a result of poor-quality care or abuse. Assessment and Treatment Units can cause significant long-term trauma to those who are inappropriately admitted into them, with an average stay of five years. In some cases, this trauma leads to additional self-harm and suicide attempts. Poor quality care can also occur in health cases receiving NHS treatment.  We reiterate and support Mencap’s concerns raised in further detail in their joint submission with the Challenging Behaviour Foundation.

(b) Article 3: Inhuman and degrading treatment

T is one of many cases we have supported in which Article 3 rights are at risk due to a lack of appropriately funded care package support. As in T’s case, an increasing amount of our cases involve the use of funding panels turning down either high cost or specialist care and support, without an adequate alternative available to a person with unmet care and support needs.

Article 3 breaches are also sadly seen commonly in Assessment and Treatment Units, for example with the use of excessive restraint, lack of access to exercise or daylight and no access to bathrooms. Some individuals engage in significant self-harm, for example by breaking and swallowing mirrors, without effective intervention and understanding by the Unit as to what is triggering these behaviours. We share the significant concerns raised by Mencap and the Challenging Behaviour Foundation on these issues and have contributed examples included in their submission.

(c) Article 5 Right to liberty and security of person

Deprivation of Liberty Safeguard concerns are also a commonly occurring theme in our casework. This may involve a failure by a local authority to follow correct procedures around standard authorisations, or in some cases not following them at all.  The CQC’s annual 2021 State of Care report[3] noted:

‘We continue to have concerns about delays in authorisations, which mean that individuals are deprived of their liberty longer than necessary, or without the appropriate legal authority and safeguards in place’

We are particularly concerned that due to severe budget constraints, some local authorities are suggesting that individuals be deprived of their liberty, rather than appropriate support be put in place. In one case, this involved a local authority suggesting that individuals could be locked in their bedrooms rather than have waking night support. 

(d) Article 6 Right to a fair trial

In determination of a person’s civil rights under Article 5, we have concerns about individual ability to effectively take part in the care and support process through the use of advocacy support as well as wider concerns around access to legal aid.

Independent advocacy is a crucial aspect of assessments and care planning for many who have ‘substantial difficulty’ taking part in Care Act processes. In one case, our client was told that the local authority ‘no longer commissions advocacy support’. Following casework intervention, we were able to secure an advocate. Without our support the client is unlikely to have secured advocacy support. In another case, a client was told that it will ‘be quicker and easier’ if they did not have to wait for an advocate.

We recently surveyed members of our advisory panel comprised of senior leaders and executive members of our member organisations, with responding members representing over 28,000 people with care and support needs. 80% reported that it can be problematic finding advocacy support, and sometimes it is not possible to secure it.

Local authority complaints processes are not only lengthy in terms of response time but lack the required transparency, including substantive information on outcomes. Some complaint responses provide information about Local Government and Social Care Ombudsman (LGSCO) procedures as a next step, but not consistently.  The ability to secure urgent interim relief through a complaints process is also hugely problematic.

Many individuals who do not have the correct care and support provision simply cannot afford to wait the requisite period for a complaint’s response (sometimes up to 40 days), as their health and safety is compromised, and an interim package of care is required pending full discussion of the challenges.

The complaints process can vary between local authority area, as recently outlined by the LGSCO annual review into adult social care complaints. The report notes that 72% of complaints are upheld, and that a lack of standardised complaints procedures and no mandatory signposting to the LGSCO is leaving many without appropriate redress:

“…Viewed through the lens of complaints from the public, this is a system that is increasingly failing to deliver for some of those who need it most. To this end, we set out in more detail later in this report where legislative changes could achieve this. These include eliminating some gaps in our jurisdiction and powers to investigate some sections of the care sector, which currently leaves some people without a means of redress”

Access to community care solicitors is problematic for some of our clients, with a national shortage of specialist community care solicitors and the availability of legal aid seriously restricted. Further detail on these concerns is found on our website[4].

Article 8 – private and family life

The majority of our legal casework team witness Article 8 breaches in every aspect of our work. Such breaches span a broad range of our casework, from community-based day packages to intensive hospital treatment. We include an Article 8 example on supported living under point 4 below (in relation to lessons to be learned from the pandemic). Recent data from our helplines data sharing project indicates that there has been a 20 fold increase in just one year (2020 – 2021) in the amount of carers contacting helplines about assessments of need. This often involves cases where either they or their family member require additional support, currently not being provided by their local authority, posing potential Article 8 breach risks.

Many of our cases involve local authority failure to meet eligible needs. These needs are basic rights, such as maintaining personal hygiene or using the home safely[5], and regularly fall within the ambit of Article 8.

Article 10 – Freedom of expression

We include concerns over potential breaches of freedom of expression under Article 6 evidence above.

Article 14 – freedom from discrimination

Several of our cases have required advice on points of discrimination predominantly on the grounds of disability. 

2. How effective are providers at respecting the human rights of people under their care

An integral part of our service involves public legal education to frontline care managers across England, encouraging members to embed a rights-based approach. Only 36% of our managers, before receiving our training, feel well equipped to deal with legal issues at work.  Our training programme transforms the way in which our members communicate and negotiate with commissioners, thereby further protecting the human rights of the people they support.

We receive referrals from our helpline partner, Mencap, relating to concern over care providers who are not members of Access Social Care. These clients report a range of concerns about care providers failing to respect their human rights, in many instances because the provider is not funded for the appropriate number of hours required to meet that person’s need, or because of a lack of awareness around legal process.

Recent data from our helplines data sharing project, analysing over 62,000 enquiries over two years, indicates an increase of over 120% in calls to helplines about problems with existing care and support in just one year, from August 2020 to August 2021.  Increases were seen primarily in callers contacting helplines about poor quality support, or requests for help to challenge care planning decisions.

3. How effective are regulators in protecting residents from human rights breaches and in supporting patients and residents who make complaints about their care provider?

60% of our advisory panel members reported that local authorities and other relevant bodies rarely learn from challenges to improve decision making in future. In addition, 70% reported that local authorities rarely have effective systems in place to ensure accountability and monitor quality and consistency of decisions about individual rights. Regulators are reliant on robust data to ensure they can effectively regulate but this data is lacking. Without these systems in place, we have serious concerns as to how regulators can effectively protect the human rights of people receiving social care.

The LGSCO 2021 annual review of adult social care complaints[6] proposed that the LGSCO take on a statutory role in setting and overseeing complaints standards, due to the inconsistent nature of data on both volume of complaints, type of complaints and outcomes per local authority area. This highlights the ongoing challenge around lack of published data on decision making.
 

4. What lessons need to be learned from the pandemic to prevent breaches of human rights legislation in future?

From the outset of the pandemic, we became concerned that central government were failing to afford adults in supported living accommodation with sufficient protection through either Regulations or guidance in the same way that care home residents had been. The Health Protection Regulations 2020 and subsequent guidance afforded residents in care homes certain legal rights and protections to ensure that their needs under the Care Act 2014, and Human Rights Act 1998, were specifically protected. We spent several months collecting evidence and providing casework support for people in supported living who, in many cases, were experiencing serious breaches of their convention rights (examples available on our website[7]). In October 2020, we referred a client affected by these issues to Bindmans Solicitors. We supported the client’s application for judicial review. Our letter to the then Secretary of State for Health can be found on our website[8].

The case demonstrated integral failings by government across the pandemic, primarily in this case Article 8 rights, for people who had care and support needs and were not living in residential care homes.  Over 600,000 people in supported accommodation throughout periods of restrictions were left without legal protection to ensure that their human rights were respected. These clients, as demonstrated in the annex of evidence on our website[9], were often unable to see family members with devastating consequences. Government must learn from these cases to ensure that disabled people in every type of accommodation, receiving varying types of care and support, never experience such harrowing breaches of their human rights again.

To learn meaningful lessons from the pandemic also requires an increased understanding of how social care is operating on the ground. This involves the need for fundamental data capture on the core foundations of the Care Act 2014 in every local authority area, collected to the same standard and in a transparent manner. Data capture should look closely at the quality of assessments, eligibility determinations, care planning and financial charging.  Government could more confidently satisfy itself that human rights are being protected if they collected this data. We would welcome independent oversight of this process.

In relation to assessments, we observed that local authorities in many instances relied on the ‘easement’ process in refusing to carry out assessments of need. In many cases they had not followed the correct easement process. There are over 70,000 people waiting for an urgent assessment of need[10], whilst nearly 300,000 are waiting for assessments, care and support or reviews[11].

It is unclear just how much of the new £4.8bn funding for local authorities announced in the recent spending review will be ringfenced for social care. Even if the sector were allocated all £4.8bn of funding, in total the sector would still have only around 60%[12] of what it needs to stabilise the system.

Improvements to social care are needed to protect human rights in care settings. Genuine improvements to social care urgently require significantly more investment.

02/11/2021

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