Written evidence from Access Social Care (HCS0062)
Background
Access Social Care (ASC) is a new charity working to provide access to justice for people with social care needs. We provide specialist social care advice and casework to older and disabled people with social care needs. We provide legal training and operate in the early legal help space, providing casework support up to and including pre action letters. We have reached thousands 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 data sharing project published its inaugural State of the Nation report in May 20212
We are submitting this supplementary response following the evidence session on Wednesday 9th March 2022, when our CEO, Kari Gerstheimer participated in Panel One – Autonomy, decision-making, and enforcement of human rights.
Autonomy and decision-making
Q1. The notion of personal autonomy is an underlying principle for the interpretation of Article 8 of the European Convention on Human Rights, which protects the right to private and family life. How is personal autonomy defined, and how is this principle applicable to individuals in care? Should there be a stronger legislative or regulatory framework to ensure respect for personal autonomy?
We have strong provisions within legislation such as the Care Act and Mental Capacity Act that should protect those in social care. Misunderstanding and misapplication of the law by those in statutory services, however, means that individuals are often left out of a meaningful decision-making process. Examples from our casework include:
Solution: Further guidance could potentially make things harder for social workers, as they are already struggling with existing guidance such as Care Act and Mental Capacity Act guidance, for example. Our solution relates to training, particularly for social workers and advocates both at the beginning of their careers and as ongoing CPD to understand the interplay between autonomy and advocacy services to ensure that individuals are supported to make informed choices.
Q2. Do we agree that the Care Act and Mental Capacity Act are clear … it is just not being followed? What more could be done?
The Care Act and Mental Capacity Act are clear. However:
Solutions: Recommendations from the NDTI report should be followed (note this is not yet published – we have seen a draft). Training requirements for advocacy services should include mandatory Care Act training. Monitoring and evaluating of the effectiveness of advocacy services should also be improved.
Q3. To what extent are there concerns in relation to the adequate involvement of care users and relatives in health and care decisions? Are there particular concerns for people with learning disabilities and/or autism, and for people who lack capacity to make decisions?
The main concern arising from our casework is the tendency to exclude family members involvement from assessment and decision-making processes. Examples include:
Solution: We recommend that all local authorities should be required to have independent advice and support services (IASS) for Care Act matters similar to that provided under the Children and Families Act to support families with SEN matters. This would require a local authority to have an independent service to advise individuals on their rights and in certain circumstances (as happens with the current IASS) advocacy support would be provided to both the individual and the family member in order for individuals and families to be able to meaningfully take part.
In addition, problems with the way that advocacy is commissioned means that the advocacy can be poor quality because there is not enough time to get to know the person and their views. We have advised on a number of cases where an advocate has been brought into the decision making process very late in the day (often after the care assessment has taken place) and it is impossible for the advocate to take part in a meaningful way. The advocate’s presence has then been used to essentially rubber stamp the decision of the LA and to ignore views of family members. Solutions to this problem include better commissioning, with more time to get to know person. Contracts for commissioning should be a lot clearer on the remit of the work. Guidance for commissioners, setting out minimum standards for advocacy should be considered.
Better training will equip advocates to fully support a person. During some of our training for advocates in local groups, there was a huge variation in understanding as to what their role was there to achieve. Training both on the MCA and Care Act as well as how the Equality Act and HRA intersect into this should be mandatory. More training on understanding capacity and how to ensure someone can take part in a process meaningfully with their support is important, including when it is appropriate for the advocate to challenge.
Problems with conflict – advocates unwilling to challenge when there are clear legal issues
Example: An individual who lacked capacity was being moved from her current provision to a care home for the elderly. The advocate stated she did not think it was in the individuals’ best interests and neither did her current provider. They asked for the matter to be referred to the Court of Protection. There were no family members. The Local Authority intended to make the move anyway, and the care provider contacted us for advice. An urgent application was made to the Court of Protection. However, the advocate did not feel she could do a witness statement for proceedings without getting it signed off by her manager. The advocacy service said it was not appropriate for them to be involved in such proceedings.
We would recommend having more explicit guidance around the role of an advocate in challenging decisions and resolving disputes.
Potential breaches of Article 10 (the right to information)
It is hard to make informed decisions if a person doesn’t have all the information. Too often, paperwork such as copies of assessments or eligibility decisions or other relevant information (for example local authority intent to close a service / make millions of pounds worth of savings across a local authority area by conducting new assessment) is withheld from people with social care needs or not presented in an accessible or transparent way
Recommendations:
Guidance could be amended to include time limits for the sharing of assessment and other paperwork relating to an individual’s care needs and care plan.
Consultation processes need to be more meaningful rather than being a tick box exercise. They are often inaccessible for many people, not immediately clear on local authority websites or conducted over holiday periods (for example Christmas or school holidays). Currently, we know that we need to monitor a local authority website for any sign of consultation, but this could be made more meaningful by requiring public bodies to publish consultations more widely, or by identifying grassroots organisations to consult with, holding public forums to garner views. This does happen, but not consistently across the country. CQC inspections could cover the consultation process to create greater accountability.
Q4. How can staff in care settings be adequately trained to ensure that all health and care decisions take proper account of the human rights of care users?
Compulsory training on Care Act and human rights issues would be desirable. Due to the complexity of ongoing issues, some staff will need support and this should be available to them. Ongoing learning based around real life cases is important – applied training would support staff to truly embed knowledge. A legal advocate can also be beneficial, for example during the COVID-19 pandemic we helped care providers to negotiate the complex COVID-19 regulations, balancing rights and health and safety legislation to facilitate family visits in line with Article 8 ECHR.
As a legal organisation we help with problem solving. We have worked alongside local authority and NHS representatives – by helping individuals, families and social care experts to apply rights-based language and using legal frameworks to resolve problems we have been able to improve relationships and avoid disputes rather than cause them. Co-production of training with those with lived experience would ensure the training is meaningful and effective ( see for example the Oliver McGowan mandatory training). In some cases training needs to be trauma informed because of the impact of experiences of individuals. For example, trauma of those who have been detained or trauma of being in inappropriate setting.
Q5. Could data be used more effectively by individual care homes and across the system to enable better human rights protections? What data would you like to see collected, either by individual homes or aggregated across the system, and how should it be published in order to increase the effectiveness of human rights protection and monitoring?
We urgently need more data on race, and type of disability (including multiple disabilities with a primary support reason). We do not have enough data to even know whether people are being discriminated against because the data is not being collected adequately. Ethnicity data is collected from some local authorities within the Short and Long Term Support data, but this is hugely problematic because:
We believe that it is vital to make data collection and reporting mandatory in the following areas:
satisfactory leisure activity to be placed in front of a TV all day (the fact that there were less reported instances of safeguarding concerns during the pandemic is seen as a positive but in some cases this is because people haven’t moved from their sofas and they have not been given opportunities).
By capturing data on disability alongside eligibility criteria decisions such as whether a person was deemed to have eligible needs relating to “managing and maintaining family relationships” or “accessing the community”, patterns of discrimination may emerge.
Local government software must be capable of collecting the same information to the same level of detail across all areas. We note the Data Saves Lives draft strategy[3] focus on making these systems fully interoperable.
Enforcement of human rights
Q6. For human rights to be effective, they should be enforceable. What are the obstacles that people in care face to enforce their rights and to seek redress?
There are very significant problems with enforceability of rights which we have summarised below.
- 1. Knowing that rights have been abused in the first place. People trust their social worker and assume that the local authority would not tell them something unlawful. Our experience is that it tends to be more capable and more highly educated families that will challenge the system. In our experience, underserved communities are less likely to identify that there is a problem. This contributes to health and social care inequalities. Proactive public legal education work in communities can strengthen
- 2. Knowing when and how to seek out advice is extraordinarily complex and it is hard to know where to go – Citizens Advice don’t tend to advise on community care , helplines services can offer information and a basic level of advice but have limited specialist expertise for full advice requirements. We strongly recommend that there needs to be an independent advice service in each local authority area – see our comments above.
- 3. Paucity of early legal help – despite the fact that most people need early intervention to resolve issues, there are extreme problems with accessing specialist community care advice for individuals who wish to challenge public body decision making in relation to social care. There has been a 77% reduction in the number of community care legal help matter starts since 2010[4]. Access Social Care have been working on a research paper (not yet published) which highlights the problems experienced by legal aid lawyers. Early legal help is frequently loss making for legal aid lawyers – it is usually paid on a fixed fee basis. And yet it is early legal help that most people with social care needs require. At Access Social Care we have a 98% success rate with our cases – and we only work up to the letter before action stage so we never go to court. We urgently recommend that changes are made by the Legal Aid Agency to improve access to early legal help. We make more detailed recommendations in our research paper which is due to be published later this year.
- 4. Lack of legal aid providers – as set out above, problems exist with legal aid, including low numbers of certificates being issued for community care cases. Many legal aid providers have left the profession because community care is not financially sustainable.
- 5. Complaints and Ombudsman processes are often too slow. In many of our cases there are live safeguarding issues that make it inappropriate and not in the best interests of our clients to use these processes.
- 6. We have very serious concerns about the proposals for JR reform and HR reform. The reforms being proposed by Government will make it even more difficult for claimants. In particular we are concerned about:
Q7. Is the Care Quality Commission effective in inspiring confidence that it can protect human rights and guarantee their enforcement in care settings?
The quality of inspections is variable. One recommendation is for CQC to be given LeDR reports and/or it be mandatory for them to attend inquests where an individual has died in a care setting.
There are some changes that have recently happened or are about to happen that need to be seen through before this question can be answered in full. Debroah Ivanoa, who has responsibility for LD and autism, has recently been appointed in the CQC. The impact of her role needs to be monitored. Some of the work she has done is here: https://www.caremanagementmatters.co.uk/feature/inside-cqc-improving-support-for-people-with-learning-disabilities-and-autism/.
CQC reports have also made helpful recommendations (https://www.cqc.org.uk/publications/themed-work/rssreview, https://www.cqc.org.uk/sites/default/files/20200623_closedcultures_guidance.pdf https://www.cqc.org.uk/sites/default/files/20170612_registering_the_right_support_final.pdf
In the Health and Care Bill there is an intention to reinstate the provision for CQC to inspect adult social care in local authorities. Without having this additional power, including the power to inspect those who commission services, it is very difficult for the CQC to protect human rights in certain circumstances.
CQC have no role in regulating provider collaboratives which include large providers running private hospitals. As a provider collaboratives they have budget and powers to commission services so that people can be discharged from their inpatient services, but they are failing in this regard – unsurprising when there are strong financial incentives for the providers to keep people in in-patient services that can be worth millions of pounds to the providers represented on the provider collaboratives . The CQC can currently do nothing to hold these providers or any of the statutory commissioners to account in failing to deliver on their Transforming Care duties.
We would strongly recommend that CQC are given powers to inspect commissioners and commissioning conducted within Local Authorities, CCGs, ICS, and provider collaboratives.
Q.8. How does the Human Rights Act apply for individuals who pay for care themselves? Are there different mechanisms for such individuals to enforce their rights, as compared to those available to people who are state-funded?
Some parts of the system, including assessments, are covered by the Human Rights Act equally for people paying for their own care as for people who are in receipt of state funded care. If privately funded social care is provided or arranged by the state, then the Human Rights Act applies. The problem is that many self-funders are denied assessments or support to arrange care packages on the basis that they are self-funders and as a result end up outside the protection of the Human Rights Act. In some cases, self-funders will decide to arrange their own care in order to protect their rights but unfortunately this has the unforeseen impact of taking the individual outside the protection of the HRA. For example, we supported a grandmother who decided to arrange her own care through an agency so she could remain at home. The LA had indicated that it was likely try and move her into residential care. In this case, there was a risk to the individual because the care agency could breach their human rights and there would be no recourse.
06/04/2022
[1] https://www.scie.org.uk/independent-mental-health-advocacy/improving-equality-of-access/briefing/
[2] https://www.ndti.org.uk/news/a-review-of-inpatient-advocacy
[3] Data saves lives: reshaping health and social care with data (draft) - GOV.UK (www.gov.uk)