Last week, the Joint Committee on Human Rights (JCHR) published a report highlighting areas of policy development and implementation that were disproportionately affecting disabled people. The report highlighted a shortfall in advocacy provision and a gap between policy, legislation and practice. The JCHR report is not the first to show this.
This article will demonstrate how advocacy’s role in ensuring quality care, dignity, making personalisation work, safeguarding people from abuse, inclusion in decision making, upholding legal rights is established. ; Advocacy is recognised as particularly useful in supporting older people, looked after young people and disabled people (particularly those people with learning disabilities and/or mental health problems) is recognised in policy and legislation.
Yet research from the sector shows advocacy services facing increased demand and losing funding. . So why are advocacy services struggling for funding? Why are people finding it harder to get support to make their voice heard?
The JCHR report It called for implementation of the right to advocacy, showing this as a necessity to support the successful implementation of the personalisation agenda. It reported that
“The Government acknowledged that ‘Local disability organisations can play an important role in providing the assistance that disabled people may need to exercise choice and control over their lives, ensuring that sufficient information, advice and advocacy is available’”.
And stated that
“Access to information, advice and advocacy is critical for all disabled people to benefit from personalisation. The Government should:
- monitor access to information, advice, and advocacy services in the context of the roll-out of personal budgets;
- continue to support and develop the role of Disabled People's User-Led Organisations to enable them to provide independent information, advice, and advocacy services; and
- implement the advocacy provisions in sections 1 and 2 of the Disabled Persons Act 1986 when reforming community care legislation.”
This echoed the calls of The Law Commission’s Adult Social Care Law report http://lawcommission.justice.gov.uk/docs/lc326_adult_social_care.pdf which recognised that,
“The evidence presented by consultees makes clear that advocacy services play an essential role in assisting people to make and communicate decisions, safeguarding people from abuse and neglect and helping people to enforce their rights, secure access to justice and obtain an effective remedy”.
The report goes on to recommend that
“the right to advocacy contained in the Disabled Persons (Services, Consultation and Representation) Act 1986 should be retained in the statute, with a power ...to implement the right and modify it to bring it into line with modern understandings.”
Also published last week Dignity In Care, a report by NHS Confederation, Age UK and the Local Government Association on how to tackle the severe shortcomings in the care of older people strongly recommends advocacy provision. The report states
"Hospitals and care homes should work with local advocacy groups to provide access to independent advocates for older people and their families. Commissioners should consider requiring independent advocates in service specifications, who would then give feedback to both the commissioners and the providers." http://www.nhsconfed.org/Documents/dignity.pdf
Responses to the Winterbourne View abuse scandal, both by Castlebeck Care and in Parliament, highlighted the vital role that advocacy can play in preventing and addressing abuse. On 7th June 2011, Paul Burstow talked positively of the fact that those at Winterbourne View now had advocates and responded to
“an important point about the role that advocacy plays for those who lack capacity or the ability in certain circumstances to advocate on their own behalf. We are looking at that as part of the overall reforms of health and social care”
In this context, as well as considering the recommendations of The Law Commission and the Joint Committee on Human Rights, the government may wish to reflect on the findings of the Dilnot Commission which recommended that Local Authorities should
“work with trustworthy local voluntary, community-based organisations to provide support and advocacy services”
The issue of trustworthiness is something the advocacy sector takes very seriously and is neatly addressed by Action for Advocacy’s Quality Performance Mark (QPM) which care services minister Paul Burstow MP rightly described in a written answer in 2012 http://www.theyworkforyou.com/wrans/?id=2012-02-20d.95141.h#g95141.r0 as
“an innovative scheme, developed by the sector for the sector, with the aim of recognising quality where it exists, and assisting all advocacy organisations to identify quality as an important part of their work.”
He went on to describe advocacy as a vital means of helping Local Authorities to meet their equalities duties .
Though undoubtedly shocking, the report on Winterbourne View was merely one more entry in a catalogue of institutional abuse in our country, Kerr/Haslam, Sutton and Merton, Cornwall; the list grows. . It appears that each time a scandal is uncovered, the recommendations call for more advocacy. The Healthcare Commission’s Report “A Life Like No Other” stated that “Having people acting as advocates on behalf of people with learning difficulties can provide valuable external scrutiny and shine a light on poor behaviours.”
This role of advocacy in otherwise closed systems is vital. Advocacy can be a window into private systems reminding everyone that the world is watching, that normal rules do apply, that abuse will not be tolerated, will be uncovered and will be challenged.
As SCIE’s publication Prevention in Adult Safeguarding stated, “Advocacy can make a significant contribution to prevention of abuse through enabling adults at risk to become more aware of their rights and able to express their concerns” . http://www.scie.org.uk/publications/reports/report41/files/report41.pdf , yet advocacy funding is falling.
The Equality and Human Rights Coimmission report into home care of older people http://www.equalityhumanrights.com/legal-and-policy/inquiries-and-assessments/inquiry-into-home-care-of-older-people/ revealed disturbing evidence that the poor treatment of many older people receiving home care is breaching their human rights and too many are struggling to voice their concerns about their care or be listened to about what kind of support they want.
A Joseph Rowntree Foundation report looking at the experience of older people in care stated that “ "the potential role and impact of advocacy is striking, but also missing for most people we met" http://t.co/OykqnTJY
People in mental distress
The Care Quality Commission’s Mental Health Act Annual Report 2010/11 described Independent Mental Health Advocacy Services as “an important safeguard that help and support patients to understand and exercise their legal rights”. However, it also discovered insufficient funding and access to these services, despite both being a legal requirement Quick calculations based on CQC’s figures would suggest that 5,000 people who have a legal right of access to IMHA are currently being denied the service.
CQC also found that non-statutory mental health advocacy services (which are more likely to be involved in preventative, community based work) were losing funding despite clear commissioning guidance
“The Department of Health’s commissioning guidance states that IMHA services should be seen as an addition to advocacy provision and not a replacement for non-statutory advocacy services. However, some commissioning bodies have cut back on non-statutory advocacy in order to make efficiency savings, on the implicit or explicit rationale that advocacy is being provided by IMHA services to the degree required by law.”
This finding echoes that of Action for Advocacy’s 2009 survey, the Mental Health Alliance report and Action for Advocacy’s 2011 report Advocacy In A Cold Climate.
Children and Young People
Office of the Children’s Commissioner published Where is my advocate? http://www.childrenscommissioner.gov.uk/content/publications/content_513 which calls for a blueprint for advocacy services to protect vulnerable children
People with learning difficulties
Mencap’s updated report “Death By Indifference “ continues to show the human cost of inequitable access to healthcare for people with learning disabilities with the phrase “74 deaths and counting”. As well as highlighting the need for the use of DNAR notices to be reviewed and the role that Independent Mental Capacity Advocacy can play in this, the report rightly goes further, recommending that
“All Trust Boards should demonstrate in routine public reports that they have effective systems in place to deliver effective, ‘reasonably adjusted’ health services for those people who happen to have a learning disability. This should include arrangements to provide advocacy for all those who need it, and arrangements to secure effective representation on PALS from all client groups including people with learning disabilities.”
Mental Capacity Act and Deprivation of Liberty Safeguards
The judgement in the case of Hillingdon / Neary– shows one vital aspect of the Independent Mental Capacity Advocate (lMCA) in supporting people’s rights. As The Honourable Mr Justice Peter Jackson strikingly states;
“On 18 November, the IMCA delivered her report. It is an impressive document. For the first time, professional support was given to Mr Neary's arguments. The previous best interests assessments are subjected to analysis. The IMCA’s conclusion is that Hillingdon was potentially not acting in Steven's best interests by refusing his father's request to have his son live with him at home. The fact that this is the most important relationship in Steven's life was noted. No evidence had been presented to show that the care he had given to Steven over the years was no longer appropriate. A return home, even as a trial period, should be considered. Further depriving Steven of his liberty might lead to emotional harm. Steven’s wish to return home was rational and understandable and Mr Neary had demonstrated in a number of ways his willingness to work positively with professionals involved in providing care for his son.
This report pointed the way towards a different outcome for Steven.”
However, the IMCA role is only one small aspect of advocacy’s role in ensuring that the basic freedom and dignity enshrined in the Mental Capacity Act are made real for people. The rights to be included in decisions, to be supported to make your voice heard, to make unwise decisions – all of these are merely theoretical for many people without the presence of someone who will stand by their side in decision making processes.
Ensuring quality care
The Care Quality Commission’s regulation framework Essential Standards of Quality and Safety http://www.cqc.org.uk/sites/default/files/media/documents/gac_-_dec_2011_update.pdf (1a) states that, in a good quality service,
“ People who use services are involved in and receive care, treatment and support that respects their right to make or influence decisions because the service:”
For many people this would require support from an advocate, and indeed the guidance goes on to specifically state that a good service
“●● Makes people who use services aware of independent advocacy services
wherever they are available.
●● Cooperates with independent advocacy services wherever a person who
uses services uses one.”
Section 2a which deals with managing risk through effective consent procedures talks about the services
“Respecting the right of people who use services to have an advocate to assist them in understanding their options and enable them to make an informed decision.”
This guidance also highlights the value of advocacy in addressing abuse and talks about the need for advocacy services for those who wish to complain.
As I said at the top, this post is far too long. That's because there are so many places where the need for advocacy is recognised. However, despite these clear indications that advocacy is effective at
- helping people shape and control their own care
- upholding people’s dignity in care settings
- encouraging service providers to be responsive to individual service users
- establishing informed consent and
- dealing with safeguarding/abuse issues
neither central government, local government nor CQC have any means of establishing whether there is sufficient advocacy provision in any given area.
We need a formal mechanism by which advocacy need is established and recorded in local areas. We need a publication or assessment of whether these needs are being addressed. We need a right of access to advocacy to uphold people's rights.
We need to reform social care.