RETHINK MENTAL ILLNESS – WRITTEN EVIDENCE (ASC0125)
Summary:
Invisibility of adult social care
Invisibility of mental health social care
Carers
Co-production
1.1 Rethink Mental Illness welcomes the House of Lords adult social care select committee’s inquiry into adult social care and the opportunity to respond. We are particularly positive that Committee members have chosen to explore elements of this topic that are arguably underexplored or receive less parliamentary attention than other aspects of adult social care.
1.2 This response has been informed both through our ongoing work in this area as a campaigning organisation and as a service provider and through dedicated conversations regarding the questions posed by the inquiry with:
While this represents a small sample, these conversations offered a valuable snapshot of what is experienced by those living with a mental illness, carers and practitioners working on the ground that would benefit from further investigation.
2.1. All of the above stakeholders agreed with the Committee’s central proposition that adult social care is more invisible than other public services.
2.2. It is important, however, to recognise the government’s existing ambitions with regards to adult social care policy. Rethink Mental Illness broadly welcomed the government’s recent white paper, People at the heart of care.[1] This white paper sets out a commendable vision for the future and recognises the important role that social care plays in supporting the nation’s mental health. The document builds on the Care Act 2014, which set out a strong foundation for adult social care, focused on wellbeing, prevention and personalisation.
However, the white paper also recognises that the “spirit of the Care Act is not currently being met” and that the ambition of this legislation “has not consistently been achieved in the way we would have liked.” This disparity between the intentions of national policy and the reality of practice on the ground echoes what we heard from carers, practitioners, and those with lived experience.
“There is a lot of policy but i’m not sure this always makes a difference on the ground.”
Staff member from a Rethink Mental Illness carers service
For example, under the Care Act, those who need support to be involved in decisions about their care and support needs have the right to independent advocacy under the Care Act. This mirrors entitlements under the Mental Capacity Act and Mental Health Act. However, Rethink Mental Illness’s initial estimates for demand for Independent Care Act advocacy never materialised, with numbers falling short of our predictions. For example, Essex Advocacy Hub has a per annum Key Performance Indicator for 768 Care Act cases but the annual average for the past four years is 468 cases. Staff in Rethink Mental Illness advocacy services have shared a number of incidents where they had not been involved in Care Act assessments and care reviews even though clients were eligible for their support – this was blamed on poor awareness among social work teams regarding eligibility for advocacy services under the Care Act.
“The Care Act was a really powerful piece of legislation but it was introduced quietly, and bringing it into practice has lacked some of the planning as seen with other legislation. As a result, many elements of the Act are not properly understood.”
Richard Walsh, Associate Director of Advocacy at Rethink Mental Illness
2.3. Many challenges were reported in navigating the social care system and managing the administrative and practical burden of seeking support. A member of one of our peer support groups with lived experience of mental illness shared their experience of leaving an inpatient service:
“I had to do a lot of phoning around myself when in hospital just to find out what was available in the community. I then had to go through a very protracted process for getting funding which took months and during that time I couldn’t leave hospital despite being medically ready to do so.”
Vulnerable individuals should not be in the position where they are left to navigate the complexity of the system on their own. This is where services such as independent advocacy can play a role.
In the community, there is also a role for social prescribing and the increasing number of link workers operating across the country. In Grimsby, North East Lincolnshire, Rethink Mental Illness has developed a Mental Health Navigator role to improve access to social care and other community support for people severely affected by mental illness. This service is integrated within the primary care network and NAViGO, a social enterprise service provider. The role provides emotional assistance to clients alongside help to access support for their non-clinical needs, whilst also reducing non-clinical demand on primary care. In recognition of the positive difference that Community Mental Health Navigation is making both for people severely affected by mental illness and for the healthcare workforce, North East Lincolnshire PCN has expanded the service to all its surgeries, funding three additional Mental Health Navigators who started in post in February 2022. Staff from Rethink Mental Illness carers services emphasised that primary care is frequently an individual’s first point of contact with the health and care system and stressed the need for awareness of and links into wider support within primary care. Funding for Mental Health Navigators through NHS England’s Additional Roles Reimbursement Scheme[2] is one positive way in which the NHS could support visibility of and access to social care support.
2.4. Lack of funding for social care is both a symptom and a cause of the greater invisibility of social care within the system.
The financial context in which the Care Act was rolled out has almost certainly had an impact on its implementation. Real terms spending on social care fell rapidly between 2010/11 and 2014/15,[3] just before the Care Act became law. It only returned to 2010/11 levels in 2020, amid a picture of significantly rising demand for support. In 2009, the government removed the ringfence around funding for the Supporting People Programme, which has been introduced to fund services that support people to live independently. Between 2011, when this funding was rolled into local authorities’ formula grant, and 2016/17, spending on the services provided by Supporting People fell by 69%.[4] People living with a mental illness who need this vital help have been subject to increasingly tighter eligibility for state-funded support. In 2016, The Mental Health Foundation reported that there had been a 25.5% reduction in the number of people receiving social care for mental health problems since 2009/10, with no evidence of a reduction in the need for such support.[5]
In September 2021, the government committed £5.4bn of funding generated through the new Health and Care Levy over the next three years to social care. It nonetheless must be noted that none of this funding is provided with the aim of providing immediate stability to local authorities or stretched social care providers who have increasingly struggled over the past decade to provide adequate care. The Chancellor aimed to address this through provision of a further £1.6bn per year in grant funding for local authorities over the next three years. However, this funding must be shared across local authority priorities, and falls short of what is needed by the system. In 2018, the IPPR estimated that £1.1bn was needed to reverse cuts to mental health social care and supported housing alone.[6]
It is perhaps a commentary on the invisibility of social care that the government has increasingly found ways to fund social care services by giving money to the NHS, rather than by providing this direct investment to local authorities. This arguably reflects poorer recognition for the range of social support that local authorities can provide, and the benefits of that support. The introduction of the Better Care Fund in 2013 was and remains a landmark investment in integrated health and care, and Rethink Mental Illness would support the introduction of further flexibility within its remit to include mental health. However, social care funding administered by the NHS is perhaps more likely to address NHS priorities (e.g. freeing up inpatient beds) than other outcomes that social care can deliver, such as helping people to establish their independence and participate in community life.
3.1. The important role that social care plays in supporting the nation’s mental health is even less understood and more invisible than adult social care more broadly. Mental health social care plays a vital role in supporting people living with severe mental illness to recover following hospital care, stay well and prevent further crises. Mental health social care includes things like community services, specialist employment services, supported housing and professions such as Independent Advocacy and mental health social work. While medical interventions have a critical role to play, many with lived experience of mental illness cite social care as having made the biggest difference in their recovery.
When people can access this support, it is frequently the difference between a fulfilling, independent life and relapse leading to a hospital stay.
3.2. Government action on social care and the conversation surrounding it has until very recently focused on issues impacting older people. Upon entering Downing Street in July 2019, the Prime Minister promised to fix adult social care “once and for all” with the aim of “giving every older person the dignity and security they deserve.”[7] The vast majority (£3.7bn)[8] of the £5.4bn allocated to social care through the new Health and Care Levy will fund the implementation of a new cap on social care costs. Inspired by the recommendations of the Dilnot Commission in 2011, the government is setting out to ensure that no-one has to sell their home to pay for care. While an important issue, this is less likely to impact those who rely on mental health social care, due to the relationship between poor mental health and lower incomes.[9] Anecdotally, we have heard that many rely on income from benefits to pay for social care support. We are, however, pleased that the remaining £1.7bn raised by the Levy will support the government to deliver on key actions set out in the adult social care white paper, including £500m to professionalise the adult social care workforce and £300m pledged to integrate housing, health and care and improve the range of supported housing options available.
3.3. Poor awareness of and recognition for mental health social care can impact on a client’s entire journey through the system.
The first impact of this is through an individual’s eligibility for support. Some individuals are entitled to Section 117 aftercare upon leaving hospital having been detained under Sections 3 (and less commonly, 37, 45A, 47 and 48) of the Mental Health Act. This care is provided for free at the point of delivery and for as long as is needed.
This entitlement under the Mental Health Act answers the social care question for a lot of people, but not all. Those without eligibility for Section 117 aftercare, which includes those detained under Section 2 of the Mental Health Act, people who go into hospital informally or voluntarily, or those living with severe mental illness in their community who have never received inpatient mental health care, are dependent on the support they can receive through the Care Act. Many of the eligibility outcomes[10] under the Care Act, such as maintaining personal hygiene, managing toilet needs, being appropriately clothed and being able to make use of your own home safely, are arguably centred around the requirements of those in need of personal care – typically those who are elderly or who have physical or learning disabilities. Some we spoke to suggested this can make it harder to prove eligibility for support as someone with mental illness who is younger and/or does not have a physical or learning disability.
Members of a Rethink Mental Illness peer support group told us that the dominant view of social care as being for meeting the personal care needs of older people had meant that they hadn’t realised that they were entitled to any kind of social care support for their mental health for a long time, and had struggled to conceive what that support could look like.
“I found out more about the support available through the generic evaluation questionnaire I received from the council than from anywhere else…”
Member of a Rethink Mental Illness peer support group
Practitioners in our carer's services reported varied quality of assessments, due to the fact that those responsible for undertaking the assessment will not necessarily have a good understanding of mental health. Preconceptions of social care can also impact what services are available in the first place. Members of a Rethink Mental Illness peer support group stated that on the rare occasions that they had received social care support, this had often been a set package available from a care company which had focused on personal care, which is not what the kind of support they needed.
Those in recovery will frequently rely on a mixture of NHS and social care support to remain well but from the perspective of a service user or carer, it can be challenging to distinguish what support is provided by the NHS and what support is provided via a local authority. In some respects, this is a good thing – greater collaboration between these NHS and social care should allow for seamless transitions between services. However, health and social care services are different in important ways – perhaps the most fundamental of which being that social care is not universally free at the point of delivery. The invisibility of mental health social care means social care charging can come as a shock to those seeking support:
“You have cases where individuals and carers will fight hard for the support under the Care Act and then end up turning it down when they realise the cost of it.”
Mark Trewin, Head of Alliance Building at Rethink Mental Illness (Mark is also a former Service Manager for Mental Health at Bradford Council, and former Head of Mental Health Social Work at the Department of Health and Social Care)
4.1. Failure to translate policy into widespread practice is perhaps no more acute than for carers.
Practitioners from Rethink Mental Illness carers services find that carers are frequently unaware of their right to assessment and support under the Care Act. Based across various local authorities in England, staff highlighted the variable nature of carers’ experiences across the country:
“The postcode lottery is real – it impacts Carers Assessments, what support is on offer, who does the assessment… it means carers living in one area are probably having their rights met to a greater extent than carers living in another.”
Carers still frequently have to shout to have their voices heard. Despite initiatives such as the Triangle of Care[11] (a model designed to keep carers included, informed and supported when they are caring for an individual living with poor mental health), carers report being ignored and disrespected by professionals across both health and care. One practitioner from a Rethink Mental Illness carers service reported a reluctance within their local council to accept the state of the problem:
“I was sat in a meeting recently with carers and some local councillors, and one councillor simply wouldn’t believe that carers were not being listened to and kept insisting they were despite the experiences that had been shared in the meeting.”
Practitioners and members of a Rethink Mental Illness peer support group both reported that confidentiality is cited as a reason on a blanket basis as the reason they cannot receive information or be involved in decisions relating to the person they provide care and support to.
Meaningful involvement of carers provides a space for them to express their views and concerns about the care and support their friend or family member receives, discuss the impact their mental illness has had not just on the individual but their wider friends and family, and allow planning for the future for everyone involved.
4.2. In Spring 2021, Rethink Mental Illness surveyed 304 unpaid carers of people severely affected by mental illness based across England. This survey sought to determine what mental health carers deemed as the main challenges they experience and what kinds of support they would find the most valuable.
77% of respondents said that the impact of caring had taken a toll on their own mental health, and 60% said they would benefit from one-to-one emotional support from their local carers service. Testimonies from carers who responded to this survey suggests that they benefit particularly from mental health support that is explicitly based upon an understanding of or is linked to their caring role:
“I have just started counselling linked to my role as a carer”
“My partner and I receive counselling from a psychologist and psychiatric nurse who are on the same team as the professionals who help our son.”
Practitioners from Rethink Mental Illness carers services emphasised the merits of family therapy, which can serve as an invaluable tool in rebuilding family relationships following the upheaval of a mental health crisis. Our Bristol Carers Service works with mental health practitioners from Avon and Wiltshire Mental Health Partnership NHS Trust trained in delivering Family Work for psychosis.
Almost 50% of respondents didn’t feel confident that they had the knowledge and skills to support the person they are caring for. Being a mental health carer can be uniquely challenging. At its most difficult, this can involve navigating health and care systems during mental health crises, managing suicide risk and handling complex and difficult behaviours associated with certain mental health conditions. Over and above this, mental illnesses still carry a stigma that doesn’t exist for other conditions, potentially leading to carers feeling unable to seek support from friends and family.
Nearly two thirds (64%) of carers said they would like to see more support specifically catered to their needs as carers for those severely affected by mental illness.
“Generic carers support covers a wide range of needs. Mental health carers’ support is generally run by people who truly understand how debilitating severe mental illness can be.”
Practitioners within Rethink Mental Illness carers services felt that this specialist support was becoming increasingly rare amid tightening social care budgets. However, joint commissioning of or collaboration with services designed to cater to the needs of carers more broadly has been shown to be an effective way of ensuring that the needs of mental health carers are met. Rethink Oxfordshire Carers Support Service is jointly commissioned alongside Action for Carers Oxfordshire (a generalist provider) under the umbrella of Carers Oxfordshire. The service’s focus on mental health carers, allows them to deliver bespoke work to meet the specific needs of this group – for example, running an online forum for carers of individuals in forensic mental health services (which provide treatment to people with mental disorders who have committed or who are at risk of committing serious offences). The service is also commissioned to deliver Carers Assessments, ensuring these are mental health informed, and utilising their knowledge of the mental health landscape to connect carers subsequently into relevant support locally.
5.1. Among those we spoke to, social care was perceived, broadly, not to have a culture of co-production. However, it was felt that this was mainly because local authorities do user involvement in a different way. Whereas the NHS is increasingly utilising co-production at a service level, a similar ethos is applied in the social care space at an individual level through personalisation. When this works, it allows local authorities to get to know people as individuals, understand what is important to them and build care and support around that. However, the ability to deliver personalisation in practice is subject to eligibility for support, challenges around which we have explained earlier in this response.
5.2. The nature and variety of support available from local authorities would arguably benefit from greater use of co-production principles at a service level. Co-production is at the heart of the work of Rethink Mental Illness, with a growing number of dedicated co-production roles within our Policy and Practice team. The vast majority of the work undertaken by this team relates to the rollout of the Community Mental Health Framework.[12] Although this is overwhelmingly funded via the NHS, some aspects of our related co-production work focuses on social care services, for example, our group of Expert by Experience leaders based in Cheshire and Wirral have been involved in work to improve develop local authority Direct Payments. Within the context of community mental health transformation, we have found that local authorities, when involved, are enthusiastic about co-production. However, the current lack of dedicated funding to support the involvement of local authorities in community mental health transformation means that they sometimes lack the staff and resource that the NHS currently has to support it and embed co-production into their practice.
If the Committee has any questions or would benefit from further information or clarification regarding any of the information provided within this response, please contact Harvey Crawford, Policy Manager at Rethink Mental Illness – Harvey.Crawford@rethink.org.
1 June 2022
[1] Department of Health and Social Care (2021) People at the heart of care: adult social care reform white paper
[2] NHS North West London Clinical Commissioning Group (2021) Additional Roles Reimbursement Scheme
[3] Kings Fund (2021) Social care 360
[4] National Audit Office (2018) Financial sustainability of local authorities
[5] Mental Health Foundation and Joseph Rowntree Foundation (2016) Poverty and mental health: a review to inform the Joseph Rowntree Foundation’s anti-poverty strategy
[6] IPPR (2018) Fair funding for mental health: putting parity into practice
[7] GOV.UK (2019) Boris Johnson’s first speech as Prime Minister: 24 July 2019
[8] HM Treasury (2021) Autumn budget and spending review
[9] Mental Health Foundation and Joseph Rowntree Foundation (2016) Poverty and mental health: a review to inform the Joseph Rowntree Foundation’s anti-poverty strategy
[10] SCIE (2020) Eligibility determination under the Care Act
[11] Carers Trust (2015) The Triangle of Care toolkit: a resource for mental health service providers
[12] NHS England (2019) The community mental health framework for adults and older adults