BUILDING EMPOWERING ALLIANCES IN HEALTH AND SOCIAL CARE Is HealthWatch up to the job? Malcolm Alexander, Chair NALM National Association of LINk Members Patients’ Forum – Ambulance Service London Monday, 16 April 2012

Building Powerful Alliances in Health and Social Care Is HealthWatch up to the job?

Short History of PPI In the 1970s Community Health Councils (CHCs) Association of CHCs for England and Wales (ACHCEW) In 2003 Patients Forums and the Commission for Patient and Public Involvement in Health (CPPIH) In 2008 Local Involvement Networks (LINks) In 2013 Local HealthWatch (LHW) and HealthWatch England (HWE)

What is the point of Public Involvement? Patients’ safety. All health and social care institutions are potentially unsafe. Power of the public gaze – wards and Boards. Democratic rights – participative democracy. Influence services/commissioning in relation to need. Users and carers have direct knowledge of the services. Ensuring services reflect local diversity. Systems and professionals can be disempowering. Complaints should improve effectiveness and access. Our services – our money – our lives.

What statutory powers and rights does the ‘community’ have? Right of access to decision makers in PCTs, Strategic Health Authorities, CCGs (Clinical Commissioning Groups), Foundation Trusts, Local Authorities. Right of access to wards, clinics, A&E, care homes. Legal Duty to be involved and consulted. Duty to ensure consultation is fair and inclusive.

What is the rhetoric? The government says … “Great strides are being made towards fully engaging people in design and delivery of services”. “Opportunities for public opinion to inform better decision making”. “Patients are routinely asked for views about services”. “Users experience and feedback influence quality”. “Must carry on embedding the patient experience in all that we do”. “Mainstreaming engagement of local people in commissioning”.

… the Government also says … “Tackling health inequalities through meeting people’s needs”. The NHS White Paper – ‘Equity and Excellence: Liberating the NHS’, builds on the core values and principles of the NHS – a comprehensive service, available to all, free at the point of use, based on need, not ability to pay. Patients are at the heart of everything the NHS does. The NHS focuses on continuously improving those things that really matter to patients – the outcome of their healthcare. Promote shared decision making.

… the Government also says … Clinicians and patients must work together to choose and test treatments, management of care and support packages, based on shared evidence of outcomes and patient’s informed preferences. s242 of the NHS Act 2006 requires the NHS to involve and consult the public on the planning, development, proposals for changes and decision to be made affecting the provision of services.

What does this mean to us as citizens? Can we influence big decisions or only the colour of the wallpaper? Can we reach the decision makers? Who determines what we get locally? Is public involvement just PR?

CASE STUDY The London Ambulance Service Story LINks / Patients’ Forum members have experienced diminishing commitment to public involvement by the Board of the London Ambulance Service. (a) Board agendas used to provide two opportunities for the public to raise issues with the Board – at the beginning and then at the end after decisions have been made. (b) LINk/Forum representative sat round the table with Board members and made an important contribution to the Board. This has been terminated by the Board Chair.

The London Ambulance Service Story Case Study (c) Representatives are no longer permitted to sit as equal partners with Board members. The LAS was advised that the revised involvement practices did not meet their statutory duties. When this did not bring about any change in behaviour, a further letter was sent to the Chair advising him that the LAS needs to abide by NHS / DH policy and guidance. On 26 March, a successful meeting with the Chair led to an agreement about a much greater degree of involvement with the work of the LAS Board and other activities.

‘Patients must be at the heart of everything the NHS does – not just as beneficiaries of care, but as participants, in shared decision-making. As patients, there should be no decision about us, without us’. Andrew Lansley Secretary of State for Health

… so is everything alright then?

Well not quite! … over to HealthWatch …

HealthWatch What the government promised … Independent organisation. Led by its members who could employ staff. Influential and effective voice of the public. Inclusive and reflects the diversity of the community it serves. Representative of local people, users of services and carers.

HealthWatch What the government promised Giving citizens and communities a stronger voice to influence and challenge how health and social care services are provided. Leads and facilitates involvement of the public in planning and development of health services. Enable people to share views and concerns about health and social care.

HealthWatch – The How Local HealthWatch and HealthWatch England. Monitoring health and social care. Influencing commissioning. Alert HealthWatch England to concerns about specific care providers. Seat on the new Health and Wellbeing Boards. Influence the local Joint Strategic Needs Assessment (JSNA). Advocacy and advice for people who want to complain about NHS SERVICES. Provide people with information about what to do when things go wrong.

HealthWatch England Direct influence with the CQC, Monitor, SoS and NHS Commissioning Board. Collecting information from Local HealthWatch. Raising issues of national concern. Standards for Local HealthWatch. Advice to local authorities. Committee of the CQC!

Systemic Weaknesses of HealthWatch Government abandoned the model of Local HealthWatch as statutory bodies. Body corporate – Social Enterprise, eg: charity, company or co-op. Plethora of contractors and sub-contractors in voluntary and private sector. Statutory ‘activities’ – monitoring, influencing, engaging the public. Public membership not required. No genuine accountability to the public. No direct influence on the commissioners (CCGs)

Systemic Weaknesses of HealthWatch Funded by and accountable to local authority they monitor. Local authorities may not properly fund a LHW (evidence from 2011-2012). Evolution of LINks to HealthWatch unlikely. HealthWatch England to be a committee of the CQC – no local accountability(?)

HealthWatch fit for purpose? £60 million for HealthWatch – BUT poor value for money? Plans for statutory HealthWatch body abandoned. Loss of statutory status reduces influence and capacity to achieve equity and empowerment. Weak body in relation to influencing health and social care. No requirement for public membership invalidates the HealthWatch model. Volunteers free labour for Local HealthWatch ‘service providers’.

HealthWatch fit for purpose? Loss of leadership role for patients and the public. HealthWatch to be a ‘service provider’ instead of empowering patients, users and carers. Volunteers preparing LINks for transition to Local HealthWatch now feel betrayed by government. Abolition of CHCs and Patients’ Forums led to the collapse of effective public involvement. Two years to establish Local HealthWatch – two years wasted!

A Conceptual View of Public Involvement Stephen Lukes First Dimension: Decision making is observable; conflict overt; participation open. Second Dimension: Covert decisions made elsewhere; public agenda does not represent real location of power. Third Dimension: Acquiescence to domination and control; belief in systems that mislead us; resigned to the status quo.

ARNSTEIN – ‘ A Ladder of Citizen Participation’

What now? The struggle for independence, empowerment, effectiveness and value for money in public involvement bodies continues. Safe, effective democratic, needs-led services are our primary aspiration. Onwards to 2018 (end of the five year abolition cycle).

Jacob’s Ladder – ‘Celestial Participation’