Since it was established in 1963, the Patients Association has investigated health and care concerns raised by patients, monitored trends in patient satisfaction, and supported health and social care providers to deliver services in ways that meet every person’s health and social care needs.

Teacher Helen Hodgson established the charity. She had been moved to establish the organisation by, in her words, “reports on thalidomide babies, wrong patient operations and tests on patients”.  

The public were excited about this new organisation supporting their rights, joining as members at a rate of 100 per week.

Information

From the outset, the Patients Association was clear that its work was to represent patients by campaigning on policy and providing information to individual patients. It sought to rebalance the relationship between the patient and professionals. This has continued throughout its existence, with each patient’s experience informing the Association so that when it speaks up, it does so for all patients.

Throughout its early years, the Patients Association campaigned for the creation of a body which could examine complaints, without legal action, and in 1973 the role of Health Services Commissioner (the Ombudsman) was created. Community Health Councils began their statutory work locally in 1974, their legal powers giving the potential to affect improvement.

Despite these new bodies, there was a continuing need for the Patients Association as an independent (as opposed to statutory) organisation, campaigning at national on both NHS and private care. Freedom of information was a major part of the campaign, to let patients have access to their medical records. The changing attitude to patients led also to government action to ensure wider lay representation on the new Ethics Committees set up to approve clinical trials, and other professional bodies.

Partnership

Achieving charitable status in l978, the Association went from strength to strength. It became the leading commentator on behalf of patients, led by Dame Elizabeth Ackroyd. She stressed the changed relationship between doctor and patient: no longer that of “guru and disciple” but one of partnership with obligations on both sides. Years of hard work and campaigning led ultimately to the Patient’s Charter of the 1990s and the NHS Constitution ten years later.

Daily life for patients has always needed improvement. Many of the improvements we have campaigned for over the years still need improvements: better hospital food, more NHS dentists, better management of chronic pain and, improvements in the way complaints are handled by the NHS.

Claire Rayner became Chair in 1997. A former nurse, she was well known throughout the UK as a plain speaking agony aunt. She brought a new dimension of publicity to the charity’s campaigns. She became President of the Association, a new role, and held that position until her death in October 2010.

Care Campaign

In 2009 we published, Patients not Numbers, People not Statistics, 16 first-hand accounts of appalling patient care. A year later, the public inquiry into Mid Staffordshire NHS Trust, which we fought hard to secure, began. In 2011, we launched the Care Campaign in conjunction with the magazine Nursing Standard. Its aim was to ensure that all patients received the essentials of care. At the same time, we worked with the Health Foundation, partnering with the Mid Staffordshire NHS Foundation Trust alongside Pilgrim Projects and the National Confidential Enquiry into Patient Outcomes and Deaths (NCEPOD), to transform the complaints system at the trust. As part of this work the Patients Association Standards for Good Practice in NHS Complaints Handling were developed and a peer review score card.

The standards were subsequently recommended for use across the NHS in the report of the inquiry into Mid Staffs, which was published in 2013. That report set out a clear blueprint for an NHS that treats patients in a safe, dignified and caring way. The inquiry’s chair, Sir Robert Francis, became our President later that year, which was also our 50^th anniversary.

In 2014, we ran an inquiry into the NHS’s Care.data programme, acting as secretariat of the All Party Parliamentary Group (APPG) for Patient and Public Involvement in Health and Social Care. We established that the public had been inadequately consulted and the programme had to halted to allow further public consultation. The programme was eventually abandoned in 2016.

Waiting times

By the mid-2010s it was clear that patients were increasingly waiting longer and longer for treatment. We investigated this in our report, Feeling the Wait published in 2016. We warned then that things were going to get worse, although we couldn’t have foreseen then how bad things would be when we turned 60.

In 2020, we were aghast that so many health and care services were withdrawn as part of the public health measures introduced by the Government in response to the COVID-19 pandemic. We understood the need for stringent controls in the face of an unknown disease, but we were concerned that changes had been introduced with little or no consultation with patients.

Throughout the pandemic, we spoke up for patients’ need for information about how to care for themselves while they waited for care – for many this wasn’t made available. While services were restricted, we reviewed our strategy and considered: what difference do we want to make, for whom, and by doing what? Our wide-ranging review considered rising levels of unpredictability as health services were redesigned and the backlog of patient rose.

Patient partnership

Our new strategy of patient partnership was developed through this lens of uncertainty with the aim of helping patients thrive. In 2022 we published our Theory of Change, the route map for what needs to happen before we can say patient partnership is embedded across health and care. Also in 2022, we set up Patient Partnership Week – a celebration of all the best in patient partnership. It’s an annual opportunity for the Patients Association to show the work we do with patients and partners, and to invite other organisations to present what they’re doing to practice patient partnership.

In 2023, we published the six principles of patient partnership. The principles were created by working in partnership with patients, as well as a network of national and local organisations and health and care leaders. The principles are:

1. Treating patients as equals: Patients are treated as equals, with their views recognised as equally valid as those of health professionals and having an equal say in decisions.
2. Patients who are fully informed: Services and systems make sure patients are fully informed, in a way that patients can access and understand, and patients use as much information as they wish to.
3. Shared decision making and patient partnership: Shared decision making, and patient partnership approaches are used as a matter of routine in health and care systems.
4. Recognising inequalities: Inequalities are recognised by health and care services, and appropriate approaches adopted for different patient groups and communities, identifying and meeting their specific needs.
5. Seeking patient input: Patient input is actively sought, genuinely valued, and meaningfully acted on by health and care services.
6. Joining services around patients: Services join up around patients, working with them to identify their needs, and responding to them in a way that makes things as easy as possible for the patient.

Pandemic and inequalities

At the height of the COVID-19 pandemic we collected the experiences of patients attempting to access care. We said we would share our data should there ever be a national inquiry and in 2023 we became Core Participants in Module 3 of the UK COVID-19 Inquiry. This module considers the pandemic’s impact on the UK’s healthcare systems and the impact of governments’ response on the healthcare system. It also includes people’s experience health inequalities. We are privileged to be able to share what we heard from patients in this important inquiry.

One impact the pandemic had was to widen existing and significant health inequalities. This is of great concern to the Patients Association and we take every opportunity to work with partners committed to reducing health inequality and improving access to quality care for underserved populations.

Disappointment with the NHS

We have been very supportive of several post-pandemic initiatives such as the delivery plan for recovering access to primary care, the Elective Recovery Taskforce’s plan for planned surgery, and the NHS Long Term Workforce plan. These and other plans have much to commend them but patients’ experiences of care continues to deteriorate.

The Care Quality Commission’s State of health and adult social care 2023 report painted a picture of health and social care services in decline, with the most vulnerable and those at risk of inequalities being left behind. In March 2024, the British Social Attitudes survey found public satisfaction with the NHS was at an all-time low. Every day our helpline takes calls from patients who cannot get access to the services they need. This abnormal situation must not be normalised.

A manifesto for health

In January 2024, we launched our general election manifesto, guided by how patients have been affected by the pressures on health and care services. The next Government must ensure more people can get the care they need and make patient partnership a reality across health and care services. Reversing the normalisation of the crisis in health and care and rebuilding the relationship patients have with the services they need to live well must be addressed urgently. Political parties can take the followings steps to make that happen:

• Take patient partnership from theory to practice 
• Make increasing the availability of quality care a national priority
• Place health at the heart of government
• Deliver genuine two-way communication between patients and health and care services
• Provide the workforce patients need.

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 Published 24th April 2023; updated May 30th 2024