A person centered approaches and services user involvement in health and social care

Historical timeline of Service User Involvement in Healthcare 1948 – 2017

Year Key Sentence Directive Comments from some Key Policy Documents

1948 – 1974 Very little public involvement.

The main idea was that the Doctor knew best.

1974 – 1979 NHS was in an almost continuous state of reorganisation. Patient groups forming to campaign particular issues.

The start of increased emphasis of PPI and explicit design of PPI begins.

In 1974 - The Community Health Councils (CHCs) was formed in England and Wales, to provide a voice for patients and the public in the NHS (Hogg, 1999). It represented the first major government attempt to give patient and public a voice in health service delivery (DoH, 2000).

It remained the foundation for PPI for over 20 years (1974 – 2003).

*In 2001 legislation was passed to abolish CHCs. Came into effect December 2003*.

1979 – 1997

The rise of a new approach within the NHS; consumer rises. PPI strategies continues

1980s

The 1980s saw the development of the consumerism approach. This stressed the rights consumers should have to information, choice and access in relation to services or products (Baggott, Allsop and Jones, 2004). The essence was for people to have the ability to voice their opinions and express desire to improve health systems and an obvious willingness from the government to enable people using health services to play a much more active role in health system planning (Harrison, Dowswell, and Milewa, 2002).

1990s

1n 1990, first significant health policy; NHS and Community Care Act was established (UK Legislation, 1990). This policy advocated patient-centred care, and full involvement of users in determining the quality of care and information.

The 90s also saw the development of the Disability Rights Movement

In 1991, Patient’s Charter was formed (DoH, 1991). The charter championed the move to listening to and acting on people’s views and needs. Patient partnership in their own care was pushed forward.

In 1996 INVOLVE was launched. This is funded by the National Institute for Health Research (NIHR) to support active public involvement in the NHS, public health and social care research.

1997 – 2009

Patient and Public Involvement remained a recurring policy theme within the UK government, with several abolitions and structural challenges.

People having a voice and being able to make their own choice of health service was widely advocated.

YEAR 2000 In 2000, the NHS Plan document formalised the user involvement agenda (DoH, 2000a). It emphasised the new labour government’s commitment to creating a patient- centred NHS, putting its users at the centre of service design and delivery. GOAL: to offer personalised services. Patients to have a say in their own health care and have more influence in NHS and government’s agenda for care services. YEAR 2001 In 2001, new system for PPI was legislated for in the Health and Social Care Act (2001). A statutory duty was placed upon all NHS organisations with the requirement of consulting patients and the public when planning and organising services – from the early stages. Also in 2001, A commitment to Quality, Quest for Excellence document was published (DoH, 2001c) UK Government, medical profession and the NHS coming together to pledge patients’ rights to expect responsive services to their needs, treatment with respect and provision of good information. This pledge was to create a more supportive and open culture in the NHS.

Patient-led NHS: promises were made

Delivering the NHS Improvement Plan all around patients’ needs

Personalisation of health and social care was in continuous effects

YEAR 2003 Also in 2003, a document on Choice, Responsiveness and Equity was published (DoH, 2003) – this was focused on building an NHS that will listen to how patients want/choose to be treated. This will mean patients having increased choice, wider range of services, right information at the right time. In January of 2003, The Commission for Patient and Public Involvement in Health (CPPIH) was formed to ensure public involvement in decision making about health and health services in England. This type of public involvement was championed through the Patient and Public Involvement (PPI) Forums, each NHS Trust in England had one of these forums. Further structural bodies developed by the NHS to engage with service users were: Patient Advice and Liaison Service (PALS) – key role was to resolve concerns and provide information to service users and Independent Complaints Advocacy Service (ICAS) – key role was to help patient make complaint about NHS care and treatment. These services replaced Community Health Councils

Abolition of CCPIH took place on 31st March 2008. PPI forums was replaced with Local Involvement Networks (LINks)

YEAR 2004 In 2004, The NHS Improvement Plan: Putting People at the Heart of Public Services was published (DoH, 2004) – this course was to continue to ensure that personalised services is embedded across all NHS organisation for all its patients. In 2004, a Department of Health research programme added further considerable evidence which supported the place for involvement of patient and public in health decision making across the NHS. Document titled – Patient and Public Involvement in Health: The Evidence for Policy Implementation. YEAR 2005

In 2005, a policy document - Creating a Patient-Led NHS (DoH, 2005) asserted that patient and public involvement should become everyday practice in the NHS. More commitment to choice, personalised care for patients. The move was for a patient-led design where care services will work with patient to support them with individual health needs. Also included strategies to help healthcare organisations understand what patients need. In 2005, more awareness around the importance of patient involvement was published – ‘Now I Feel Tall’ What a Patient-Led NHS Feels Like (DoH, 2005a) The aim of this document was to keep advocating for a culture within the NHS where every aspect of care delivery and provision is measured by its impact on patients and to benefit the public’s health in general. YEAR 2006 In 2006, Our Health, Our Say, Our Care (DoH, 2006a) and A Stronger Local Voice (DoH, 2006b) were published. These documents promoted greater patient freedom in ensuring that all patient /local voice is central to health service planning, development, and delivery of care services locally. July 2006 – abolition of PPI forums was announced and to be replaced by Local Involvement Networks (LINks). YEAR 2007 In 2007, Local Involvement Networks (LINks) were set up. This was following the announcement that Patient and Public Involvement (PPI) Forums were going to be abolished. One of the failing of the PPI forums was that it was not representative of their communities. Hence, the unveiling of LINks was to provide everyone in the community – individuals to voluntary groups, with an opportunity to give their views on their local health and social care services. This would range from being involved in the commissioning, provision and scrutinizing of local health and social care services (The House of Commons, 2007; DoH, 2007).

In 2007, recommendations were made, in another document (Local Involvement Networks Explained - DoH, 2007) that all staff involvement (clinical and non-clinical) will be critical in developing proposals around LINks, at a local, regional and national level. YEAR 2008 In April 2008 – LINks was launched. In 2008, another policy document – Our NHS, Our Future: Next Stage Reveiw (DoH, 2008c), of its five pledges to enable the NHS deliver quality care and make this a reality. Pledge number 4 claims – “You will be involved” According to DoH (2008c: p.4) “The local NHS will involve patients, carers, the public and other key partners. Those affected by proposed changes will have the chance to have their say and offer their contribution. NHS organisations will work openly and collaboratively” (DoH, 2008c: p.4) A final report of the Next Stage Review – High Quality Care for All was published in 2008 (DoH, 2008d). some of the key steps highlighted within this document, for achieving high quality care for all were: Personalising services to fit everyone’s needs; change that is locally-led, patient-centred, working in partnership with staff. It stated clearly “If quality is to be at the heart of everything we do, it must be understood from the perspectives of patients” (DoH, 2008d: p.47) In 2008, Health and Social Care Act 2008 (UK Legislation, 2008) established a new integrated Health and Social Care Regulatory Body – the Care Quality Commission (CQC) to become the monitoring and inspection bodies for health and social care services. The Act (in chapter 1, section 5) required the CQC to publish its proposal on how it intends to:

• promote awareness among service users and carers of its functions

• promote and engage in discussion with service users and carers about the provision of health and social care services and about the way in which the CQC will exercise its functions

• ensure that proper regard is had to the views expressed by service users and carers, and

• arrange for any of its functions to be exercised by, or with the assistance of, service users and carers.

YEAR 2009 In April 2009 – Care Quality Commission (CQC) started its operation; as an independent regulator of health and social care in England, working with local groups and national organisations to ensure the views and opinions of people who use services are heard as stipulated above by the Health and Social Care Act 2008. Some key policy documents published in 2009 were: The engagement cycle: a new way of thinking about patient and public engagement (PPE) in world-class commissioning (DoH, 2009) – every engagement activity, whether its engagement or experience data (e.g. communities identifying health needs and aspirations; public involvement in decisions about priorities and strategies for services; patient involvement in service design and improvement…) should generate data about what MATTERS to patient and public Putting Patients at the Heart of Care (DoH, 2009a) – sets out the visionfor patient and public engagement and experience Helping the NHS Put Patients at the Heart of Care (DoH, 2009c) – discusses the support programme initiated by the Department of Health to help care services engage with patients and the public Understanding What Matters: A Guide to Using Patient Feedback to Transform Care (DoH, 2009d) – All NHS Trusts are to collect feedback from patients with the aim of using this to drive service improvement. Ways of collecting, analysing and using patient data to transform services are proposed. For example – individual feedback; collective perceptions.

2010 – 2012

Battle for NHS service improvement continues, with new Coalition government in power

Strong advocating for a - “no decision about me, without me” approach to health services.

Significant Act of Parliament - Health and Social Care Act (2012) published

YEAR 2010 In March 2010, the NHS Constitution for England (DoH, 2010a) was put forward. Rights and privileges for patients and the public was a particularly strong social and political agenda in this document (this document has been updated in 2012, 2013, 2015)

In July 2010, new government released a White Paper called Equity and Excellence: Liberating the NHS (DoH, 2010) - This paper set out the plans to reform the NHS. Key ethos – was putting patients at the heart of everything the NHS does.

This document proposed the abolition of Local Involvement Networks(LINks) and introduced HealthWatch England. The goal was to reinforce Patient and Public Involvement as a long-term vision in the future of health and social care, building on the existing responsibilities of LINks (DoH, 2010).

HealthWatch was originally scheduled to start April 2012, now delayed until April 2013. Its role will be heavily prescribed by the Department of Health. According to Healthwatch (2017) “Healthwatch England is now the national consumer champion in health and care”. Holds significant statutory powers to ensure the voice of the consumer is strengthened and heard by those who commission, deliver and regulate health and care services” (Healthwatch, 2017).

In 2010 Report of the Marmot Review (2010) – brought together reinforcements for person-centred care, community and capacity building.

YEAR 2011 In January 2011, defined legal duty for the NHS as a care system to keep improving the quality of patient care was published in the document - Patient-centred NHS a step closer to reality: Health and Social Care Bill published (DoH, 2011) - The plans proposed to improve the NHS was set in these five key ways below:

• patients would be more involved in decisions about their treatment and care so that it is right for them – there will be ‘no decision about me without me’;

• the NHS would be more focussed on results that are meaningful to patients by measuring outcomes such as how successful their treatment was and their quality of life, not just processes like waiting list targets;

• clinicians would lead the way – GP-led groups will commission services based on what they consider their local patients need, not on what managers feel the NHS can provide;

• there will be real democratic legitimacy, with local councils and clinicians coming together to shape local services; and

• they will allow the best people to deliver the best care for patients – with those on the front-line in control, not Ministers or bureaucrats.

YEAR 2012 In 2012, the legislation - Health and Social Care Act 2012 (UK Legislation 2012) came into effect. A new GP-Led Clinical Commissioning Groups (CCGs) was developed.

This Act imposes a legal duty on CCGs to promote the involvement of service users and their carers or representatives in decisions that relate to – 1. the prevention or diagnosis of illness, or 2. their care or treatment (section 13H).

Part 5, Chapter 1 of the Health and Social Care Act (2012) details the functions of

Healthwatch England in championing the course of patient and public involvement to

influence and improve their local health and social care services. Healthwatch

organisations have replaced the Local Involvement Networks (LINks).

Health and Wellbeing Boards were established within each local authority area –

These boards are responsible for assessing and addressing the current and future

health and social care needs of local communities [sections 194 – 199]. They are

required to carry out assessments known as Joint Strategic Needs Assessments

[section 192] and are required to involve the local community in this process.

2013 – till date Department of Health commissioned published a full initial government report of the Mid Staffordshire NHS Foundation Trust

Work to developing new relationships with patients – transforming the way involvement takes place

Ongoing government policy on health and social care integration

Further reinforcement of rights via the – The NHS Constitution for England

Next Steps of the NHS five year

YEAR 2013 In February 2013, the Francis Inquiry into the failings of the Mid Staffordshire NHS Foundation Trust between 2005 and 2008 (in lack of quality in care) was published.

Patients First and Foremost - The Initial Government Response to the Report of The Mid Staffordshire NHS Foundation Trust Public Inquiry (DoH, 2013) was a published public inquiry by the Department of Health into the level of failures at Mid Staffordshire NHS Foundation Trust. The culture now being promoted as an absolute must is one of making a meaningful difference for people who use healthcare services. The first key action in creating this new culture based on cooperation with service users, as stated by Secretary of State – Jeremy hunt is “… patients and service users, and their families, friends and advocates – these are the people who know immediately if something is not right and who must feel welcome and safe in every part of our NHS and care and support system” (DoH, 2013, p. 6)

In 2013, the document - Transforming participation in health and care ‘The NHS belongs to us all’ (NHS England, 2013) – The purpose of this development is to

support commissioners to improve individual and public participation and to better understand and respond to the needs of communities. YEAR 2014 In 2014, the Five Year Forward View document (NHS England, 2014) reinforced similar ethos on developing new relationships with patient and communities – empowering patients and engaging communities. This policy calls for exploring new models and supporting local design. The NHS is now considered as a “Social Movement”.

Integrated Care and Support Pioneer Programme (NHS England, 2014a) -this programme was set up in 14 localities – to develop innovative ways to coordinate care around the needs of people.

forward view is published

YEAR 2015

In 2015, The NHS Constitution for England (DoH, 2015) reinforced an individual’s right to be involved in planning and decision making about health and social care, either directly or by representatives, to an open and transparent relationship with service and care providers.

The Constitution sets out 7 principles that guide the NHS. With regards to involvement in services, the 4th principle states:

“It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged in accessing health services in the area they reside. Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment. The NHS will actively encourage feedback from the public, patients and staff, welcome it and use it to improve its services” (DoH, 2015: p. 3 - 4)

An integration policy - 2010 to 2015 government policy: health and social care integration - published in 2015 (DoH, 2015a) requires that everyone who uses both health and social care services should have access to care services that work together to give the best care based on an individual’s personal circumstances

In 2015 – new programmes to develop greater integration and person/community centred care were proposed.

YEAR 2016

New Care Model - Integrated Personal Commissioning – classed as a pillar for the NHS five year forward view. Built to supports the improvement, integration and personalisation of services (NHS England, 2016)

YEAR 2017

NHS England (2017) - Next steps of the Five Year Forward View published - plans to deliver a better, more joined-up and more responsive NHS in England. One that is focussed on the issues which matter most to the public. NHS that collaborates to ensure that services are designed around patients, and that is on a more sustainable footing, so that it can continue to deliver health and high-quality care - now and for future generations.