Social care is failing, but as well as proper funding, it desperately needs a new vision
The social care rumour mill is in overdrive. Despite the prime minister assuring the nation that he had a “clear plan”, the sector is now the subject of multiple proposals. While most concentrate on finding a solution to funding long-term care, there are also some fundamental suggestions around service structure and delivery. The most notable of these is that responsibility for social care could be transferred from local government to the NHS. It is a deeply flawed proposal.
The NHS and social care went their separate ways after the passing of the 1946 NHS Act and 1948 National Assistance Act respectively – the NHScentralised, free at the point of use and funded from general taxation; social care localised and means-tested.
The sectors are complementary in many ways and there has been no shortage of attempts to join them up through financial incentives, top-down edicts or locally integrated frontline teams. But the fact that these measures have been largely unsuccessful says something about differences and divisions.
The relationship between the sectors has typically been one of tension and mistrust rather than of shared endeavour. Over the years, the NHS has shifted many of its responsibilities for long-term care for older people to local councils (usually without transferring accompanying resources) while wrongly trying to retain control of long-stay provision for adults with learning disabilities, mental health issues and other complex conditions.
The privatisation of care provision added a further complication.
There is little disagreement that social care is on the cusp of collapse – it is failing to meet the needs and requirements of commissioners, providers, the workforce, users and carers. Proper funding is most certainly needed to resolve this predicament, but it is also clear that social care itself needs a new vision.
The Local Government Association and the Association of Directors of Adult Social Services have recently articulated the principles on which a new vision must rest, both emphasising the need for locally determined integrated care that achieves person-centred support, alongside a review of how the care market operates and the way the workforce is treated.
There is no reason to think that handing over the social care budget to the NHS will help to deliver on these principles. The response to Covid-19 has exposed a healthcare establishment with little or no understanding of social care, a shortcoming fatally exposed by the discharge of untested patients from hospital to care homes.
Hospital care will always be the prime focus of the NHS, and the absorption of social care into the NHS would not lead to a reappraisal of priorities. There may well be some greater service coordination but this would be geared to solving the problems of the acute sector, not social care.
The specific proposal that social care could become the responsibility of the nascent integrated care systems is notably inept. The NHS has been subjected to a bewildering array of unproven initiatives in the last few years: new care models, the vanguard programme, sustainability and transformation partnerships and now integrated care systems (ICSs).
ICSs are informal regional arrangements pursuing greater coordination within the NHS family; they are remote, unknown, unelected and unaccountable, with few links to local councils and even fewer to the voluntary sector and local communities. Incorporating social care into these bodies would not only fail to deliver on a new vision of support but would weaken local democracy to the point of collapse.
There is indeed a desperate need to “fix” social care, but an NHS takeover is nonsensical. Instead of asking if the NHS can fix social care, we need to start with a different question: how can people be best supported to lead the lives they choose? The answer is unlikely to be found within the NHS.
- Bob Hudson is a visiting professor at the Centre for Health Services Studies, University of Kent
Courtesy of FINOLAMOS mother of an Autistic daughter The Francis report stated that systemic, organisational and individual failings contributed to “the normalisation of cruelty” in Mid Staffordshire NHS Foundation Trust. The 2012/13 Annual Report by Healthwatch England showed 94% of the public agreed that the NHS and social services, could be improved. 1 in 3 of public surveyed, knew someone, who they believed, had experienced a serious mistake, abuse, or a preventable illness or death in a health or social care service. All local authorities have now combined with the NHS to form Health and Social Care Trusts. Increasingly these foundation trusts are being converted to private companies and run for max profit like Sheffield Health and Social Care and outsourcing to private hospitals and community living providers owned by US venture capital backed multinationals like Acadia/UHS. Last year a report revealed 3 learning disabled a day, died needlesslyin NHS care But these statistics can only be based on deaths that are investigated. And SLOVEN NHS revealed it only investigated ONE in every 100 learning disabled deaths. Which they justified as follows: “National data on mortality rates confirms that the Trust is not an outlier. We believe that Southern Health’s rate of investigations into deaths is in line with that of similar NHS organisations.” That makes a possible new estimation of 300 learning disabled could be dying needlessly per day. Note, ‘learning disabled’, does not mean you have a physical ill health. So why are so many autistic /LD dying ? Because their illnesses are not being treated, as it costs too much and as we know they are difficult to treat on normal wards and NHS is bursting already with ‘normal’ patients. And they are being over medicated with drugs that have huge unrecognised physical side effects.. Due to a huge political push in the last 10 years the LD/ASD are now diagnosed with mental/behavioural disorders, on a perfunctory symptom basis, either due to their autism/LD per se or way they are ‘managed’ http://www.homecare.co.uk/news/article.cfm/id/1574379/nice-new-guidance-people-learning-disabilities Spending huge amounts of money without accountability, does not improve mental health services. The billions spent by the NHS in the past 5 years didn’t, with no improvement in outcomes, in fact these are getting as more money is ploughed in increasing private venture capital profits. years.http://www.parliament.uk/business/publications/written-questions-answers-statements/written-question/Commons/2015-06-11/2174/ Mental health services have been moved from NHS public trusts, to local Health and Social care Trusts, where services are provided by private companies using public NHS money. Large private monopoly corporations like Acadia, Cygnet, Care UK, Cambian/ Lifeways etc, providing, both residential care, andhealth care as they are building more ‘specialist’ hospitals. These private Companies don’t need to comply with Freedom of Information Requests so we are unable to find out about their services and how they spend our public money. Even death numbers are difficult to obtain let alone investigate. INQUEST charity, failed to find out the number of children and adolescent’s dying in mental health institutions, and see here, concluded there is no central record of deaths. http://www.inquest.org.uk/media/pr/number-of-hild-in-patient-mental-health-deaths-not-known So not only does cruelty and over medication go unchecked but deaths are unknown and not investigated. And once a mental patient reaches 18 neither he nor his family, have any rights and their only possible advocacy is through the state, that provides the services. They are being removed under the Nearest Relative provision under the MHA and replaced by a Social Worker employed by those who with the CCG commission the mental service. CAMHS, Cygnet , Acadia as private are not subject to FOIA Notices. Lenore Care has just started to build a 40million pound village on cheap land in South Shields to house 40 autistic adults, it already has a similar for learning disabled. http://www.disabilitynewsservice.com/alarm-over-huge-new-care-village-for-autistic-adults/ Cygnet goes from strength to strength as it receives millions from the government to build more hospitals and create mental health pathways. Mental Health is now 70% owned by US Multinationals Cygnet is owned by UHS, and Acadia, backed by venture capitalists. As private equity can foresee the huge potential for profit as completely backed by our governments past and present. The Head of NHS England was an executive of United Health Services for 8 years after advising Blair on public services investment. http://www.healthinvestor.co.uk/ShowArticle.aspx?ID=4059&search=PiC Deaths, in such private provision, do not appear, to be subject to any independent scrutiny and there is no duty to investigate them. deaths.https://finolamoss.wordpress.com/2015/08/25/how-many-deaths-in-st-andrews-northampton-who-is-accountable/ From April 2017 people held under a DOLs authorisations under the MCA which have doubled , are no longer entitled to a Jury if they manage to get an Inquest into thei death as this have been excluded from being ‘state detention’. http://www.mentalcapacitylawandpolicy.org.uk/new-chief-coroners-guidance-on-dols/ Read latest Health and Social Care statistics here with interesting blog showing 700,000 learning disabled appear to have disappeared. http://chrishatton.blogspot.co.uk/2015/11/the-disappeared.html?spref=tw The Care Quality Commission, is the only regulator of health and social care services, and even Parliament reports it is ineffective. http://www.parliament.uk/business/committees/committees-a-z/commons-select/public-accounts-committee/news-parliament-2015/care-quality-commission-report-published-15-16/ It failed to respond to the concerns raised by the whistle-blower at Winterbourne View Hospital in 2010. Most inspections are on paper and announced. And did not help Thomas Rawnsley when he died at 20 is a Cambian home despite warning from his mother. And the CQC does not consider individual complaints. Charities, legal practitioners, advocacy groups and the Mental Health Foundation report ‘professionals assume incapacity because of a mental illness, deafness, appearance, age” The Mental Health Foundation, concluded that people were being found to lack capacity “for reasons which the Mental Capacity Act does not allow, i.e. a blanket assumption based upon diagnosis or an unwise decision”. The danger/use of removal of ‘capacity’ under The Mental Capacity Act 2005. Parent carers report, the assumption seems to be, that if a person has learning disabilities, then they don’t have capacity to make their own decisions”. http://www.publications.parliament.uk/pa/ld201314/ldselect/ldmentalcap/139/13907.htm This is illegal under the MCA, Autism Act 2009, Equality Act, and Article 12 EU Rights of the Disabled Directive. A finding of ‘incapacity’, allows removal of liberty by the Court of Protection to and in private providers specialist hospitals, and residential care. Every decision of the ‘incapable’, is then made by this placement provider, who owes its overriding duty to efficiency, and, corporate profit. Family cannot represent their loved on in the Court of Protection this is done by an Official Solicitor chosen by the state. Nor do they have an right even to take part in the state decision making process as to where their loved one lives or is treated. In fact they can and are being excluded from even visits to their loved ones under an MCA ‘best interests’ decision by the for profit service provider.. The average cost of a placement is £4,500 + per week. ‘Specialist’ mental hospitals charge NHS £900 per day minimum and £13,000 a week on a secure ward.. A parent carer now receives £62.50 per week reduced from £90, and the DLA of £105 reduced from £125 and £77 is deducted if any support is provided. The Carers Act 2014 does not impose a duty on LAs to provide support to carers, and this support is exceptional. The Chronically Sick and Disabled Act 1970 provides up to £240,000 per annum for the medical care, support and education of the disabled. Local Authority Adult Services policy for autistic/ LD/ disabled, is onlyaway from home living for life, private profit residential provision. The providers are large venture capitalists, and, Canadian Pension Funds, like Lifeways and Cambian, Dimensions, and charities like National Autistic Society, and SCOPE. Some also own, their own income generating adult’s medical treatment, through their own medical practioners, psychiatrists, and Adult Treatment Units. ‘Care’ is overseen by local Health and Social Care Trusts, but they also commission it and mental heath practioners work for those they commission so it is a cabal with no independent players. ‘Best Interests’ is decided, in secret under the Mental Capacity Act, and enforced by the Court of Protection. There is no central check, on amount, or type of enforced medication used by these private for profit providers. There are no external, or independent investigations into abuse, or, death in their care. http://www.no5.com/news-and-publications/publications/351-inquests-and-deprivation-of-liberty/ Members of the Boards of Supported Living Providers, sit on Local Safeguarding Authority Boards. The only oversight of the extremely vulnerable residents’ welfare, is by an adult social services manager, whose LA employer, commissioned the private care provider, and, is liable for it. As these residents have communication difficulties, and, are deemed by law ‘incapable’, their views are ignored. And, they have no rights under the MCA. Independent Mental Capacity Advocates, merely consult with the incapable. An IMCA, has no right to take part in any decision making. They are there merely to support and inform the ‘incapable’ in the decision making process. A paid stranger usurps the parents/family of the disabled. Once it has been decided supported living, is in an incapacitated’s ‘best interests’, his care for life, is decided by his corporate provider, without oversight of the Court of Protection. The Human Rights Group Liberty, expressed concern about the very wide range of decisions which could be made under the Act, combined with a “worrying lack of oversight”. Families have no rights. And, are generally not allowed to represent their loved ones in court. Nor are appointed deputies for them. And, if donees of a Lasting Power of Attorney, this is invalidated by incapacity. If family complain about service provision, their access to their loved ones is stopped, or limited. They can only make a complaint to the service provider which is dealt with internally, or the Local Authority Provider, which has authorised, commissioned and implemented the care provision. Parents cannot make any decisions about their adult child’s care or treatment, or, even as to whether is life support machine is switched off. They have no right to their child’s funeral or body. Under Mental Capacity Act Regulations, all body parts and tissue can be used as the state requires. The number of disabled deemed incapable, and detained for life, in private supported living under the Mental Capacity Act, or, sectioned indeterminably under the Mental Health Act, is not recorded. This figure is likely to be well over a million in England. Hundreds of thousands of very vulnerable people, lose their liberty each year, and, this is increasing. See the latest statistics for learning disabled autistic inpatients http://chrishatton.blogspot.co.uk/2015/11/impatient-inpatient.html The Magna Carta stated a citizen’s freedom can only be removed by trial by his peers. But, theirs is lost in secret, in the Court of Protection, and, by privately employed experts in secret tribunals under the Mental Health Act. If you think this is wrong, then forward this post to your MP, and ask him to raise these matters in Parliament. Before, you, or, your loved one disappears to make corporate profit.
Reclaim Social Care was established in response to the crisis in the Social Care Sector. Over the last decade Disabled people’s ability to exercise self-determination has been undermined by the closure of the Independent Living Fund, privatisation and marketisation of so called ‘Social Care’, and the tightening criteria for support. Both the crisis within Social Care provision and the present dangers around the Covid-19 pandemic have combined to place Disabled people of all ages, support workers and personal assistants in vulnerable situations.
Sandra Daniels, vice chairperson of Reclaim Social Care, said: “We are living in difficult and dangerous times where so much remains unknown. NHS and Social Care staff are on the frontline and are being put at risk due to government policies, lack of testing, inadequate resources, and staffing levels.”
Service users inside residential settings are being put at risk because staff are not being protected or supported. One reason for this may be that many residential homes are run by the private and voluntary sectors and are therefore unable or unwilling to take the necessary steps. We believe that until Matt Hancock, the Health Secretary, announced new measures on the 15th of April, the national government were failing Disabled people of all ages, support workers and personal assistants irrespective of whether or not they are living or working in the community or within local authority or private facilities.
The government belatedly acknowledged that support workers and personal assistants often work in close proximity to Disabled people and therefore the guidelines around social distancing are generally pretty meaningless. Disabled people are at higher risk of contracting coronavirus because of “barriers accessing preventive information and hygiene, reliance on physical contact with the environment or support persons, as well as respiratory conditions caused by certain impairments”, according to the International Disability Alliance (IDA). The UN High Commissioner for Human Rights, Michelle Bachelet, said that “…. governments should address the situation of detained people in their crisis planning to protect detainees, staff, visitors and of course wider society."
What is slowly emerging is the high incidence of Covid-19 and rate of deaths within residential homes that are not being reported or recorded as part of the pandemic. Although there are many reasons for this, we believe some of the underreporting is due to unacceptable attitudes towards the residents and the staff, many of whom are low-paid women workers. The word expendable means 'of relatively little significance, and therefore able to be abandoned or destroyed’; it is vital no one should be treated as if they were expendable. Reclaim Social Care believes the lives of disabled people of all ages are devalued and the lives of women are undervalued. During this COVID-19 crisis, everyone is at risk, but many are made vulnerable by the sheer neglect of the social support system. The evidence over the last few weeks has shown that our government planned inadequately and not taken appropriate measures to protect people. It was only under exerted pressure that guidelines for care homes were belatedly released. This is only the tip of a scandalous iceberg, however. The latest measures are to be welcomed, but once again, we fear it is too little too late.
It is important to ensure the government follow through on their promises regarding the safety of staff and service users and that they are also held to account. In addition, this pandemic further strengthens the argument for a new tax funded national co-ordinated service that is free at the point of delivery.
Reclaim Social Care is a non-party political, coalition of individuals and organisations campaigning for all social support, Independent Living, and other care services to be brought together as a national service. This service would be publicly and democratically run through community-based involvement of service users, Disabled people’s organisations along with carers, in conjunction with the NHS and local authorities, to design and deliver co-produced provision.
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