When the Patients Association’s committee first met in January 1963, it included two lawyers, an engineer, a local government official, and a housewife, and was chaired by the teacher Helen Hodgson. She had been moved to establish the organisation by, in her words, “reports on thalidomide babies, wrong patient operations and tests on patients”. These three elements provided core themes – safety, rights and ethics – that would run through the Association’s work.

The creation of the National Health Service in 1948 had established free access to healthcare to everyone. But by 1963, it was becoming clear that the NHS wasn’t as responsive to patients as it should be: patients’ rights and their dignity weren’t always respected, patient safety was an issue, and many patients didn’t get a say in their care. The Patients Association formed as a response to these concerns. We pushed hard to ensure patients’ needs were considered, often with considerable success. 

Research

The Helsinki Declaration published in June 1964, 18 months after we were founded, states the ethical principles for medical research involving human subjects. In the Association’s early years, how and if patients could give consent to taking part in research and the teaching of medical students was a major cause for us. Similarly, if patients declined to be part of research or medical students’ education, we were concerned that their care should not suffer as a result.

Following on from these concerns, was the idea that patients have rights to have a say in their treatment. This development was part of a wider societal concern about human rights. This concern included civil rights, reproductive rights, and gay rights. Concern grew throughout the 60s and many voluntary organisations and charities were established to champion various rights.

The emergence, and promotion by the Patients Association, of the idea of patients as active partners in their care, with rights that must be respected, took place in this wider context. 

Patient rights

Throughout the 60s and 70s, governments ignored the idea patients had rights. But attitudes changed and by the early 1990s the idea that patients had rights was embedded in the Patient’s Charter, first published in 1991. It was described as a “commitment to providing high-quality services within the NHS, which are responsive to people's views and needs” and it challenged “staff to change deep-rooted practices”.

The Charter was side-lined in favour of the NHS Plan 2000. The plan reorganised the health service, introduced targets, and mandated that there should be greater public and patient representation on healthcare bodies. Nearly a decade later, the NHS Constitution was introduced in England. Among its pledges are the need for NHS services to reflect the needs and preferences of patients, and the requirement for the NHS to work in partnership with other organisations in the interest of patients, local communities and the wider population. It also made the NHS accountable to those it served. So not quite an endorsement of patient partnership, but it’s clear that the concept of patients as partners in their treatment and care is becoming mainstream.

It’s perhaps important to remember that as the Constitution was being launched, the failings as Mid Staffordshire were finally being investigated. The Patients Association was vocal in calling for a public inquiry into the scandal.

The NHS Constitution was updated in 2013, strengthening, among other things, patient involvement, the need for good patient information, and the need to treat patients with dignity, respect and compassion.

It is now past time for a review and update of the Constitution, and we’d like to see patients and our members involved in that.

Partnership

In 2010, the NHS white paper, Equity and Excellence: Liberating the NHS, once again reorganised the health service but went further than before in recognising patients’ rights and the need for person-centred care. It included the phrase, ‘no decision about me without me’, and placed patients at the centre of the health service. It wanted patients to have greater choice and control.

A year later, 2011, we published our report Listen to patients, speak up for change.  It contained first-hand accounts of the experiences of care of 17 older patients and called on the Government to explore the introduction of independent clinical patient safeguarding champions, conduct a comprehensive review of the NHS complaints process and introduce a national survey for all complainants. We worked with the trust to improve its complaints handling and created the Patients Association Good practice standards for NHS Complaints Handling, for use by any NHS organisation.

Elsewhere in the NHS, partnership was becoming more accepted and encouraged. The NHS England Five Year Forward Plan, published in 2014, took on board comments from patient groups on how to close the widening gaps in the health of the population, quality of care and the funding of services. The plan contained the ambition to establish a new relationship between patients and the NHS, based on patients having control over their care.

This theme was continued in NHS England’s Long Term Plan published in 2018

The plan was drawn up by frontline staff, patient groups, and national experts. Some of its key ambitions included a shift to person-centred care. It recognised that genuine partnerships required professionals to work differently and a systematic approach to engaging patients in decisions about their health and wellbeing. In the same year, the Comprehensive Model for Personalised Care was introduced to support people to manage their health. From our perspective, the model includes many things we advocate: shared decision making, choice and supported self-management, among other things.

Last year, statutory guidance for Integrated Care Boards, NHS trusts and foundation trusts Working in Partnership with People and Communities was introduced. It included 10 principles and we worked with NHS England to develop them. Legally, the NHS must provide a platform to build collaborative and meaningful partnerships that start with people and focus on what really matters to communities. We welcome the ambition for health and care systems to build positive, trusted and enduring relationships with communities to improve services, support, and outcomes for patients.

Patient partnership

Despite our role in establishing statutory guidance that seeks to embed patient partnership, and the many documents, from the Patient Charter to the Long Term Plan, we believe patient partnership has not been realised in practice - yet.

Governments, the NHS and health professionals agree personalised care and working with patients should be standard. But we know it doesn’t happen regularly throughout the NHS in the UK. Safety and abuse scandals in the NHS still persist. There are serious health inequalities across the UK with some patients struggling to access the healthcare they need to live healthy lives. The pandemic and ensuing crisis in the NHS has caused a rupture in the relationship between patients and the NHS.

The future

Much has been achieved since 1963. Issues that were major concerns for us then are now chapters in the history books. But there is still a role for the Patients Association and work to be done. Our strategy of patient partnership is a way to rebuild the fractured relationship between patients and the health service. Patient partnership offers a way to improve safety, quality and cost-effectiveness of the NHS.

In this 60^th year, we recommit to our purpose to ensure everybody can access and benefit from the health and care they need to live well, by ensuring that services are designed and delivered through equal partnership with patients.

Join us, become a member and help us campaign for patient partnership

 Published 24th April 2023