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, nutritious 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 social care.

As we look back at the achievements of the charity, we are proud but not complacent. At the start of the year, Sir Robert and our Chief Executive Rachel Power felt compelled to write to the Secretary of State Steve Barclay about the appalling experience so many patients were experiencing. With the NHS in crisis and patients suffering, there is still a need to speak up for change.  

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 Published 24th April 2023