The Patients Association

A Patients Association Minutes 1963-1991

B Patients Association Organisation and Administration, 1975-1987

C Correspondence with Other Societies, Associations and Organisations, 1972-1986

D Subject Files, 1975-1986

E Project Files and Miscellaneous Subject Files, 1960s-1983

F Publications by the Patients Association, 1975-1996

G Publications by Other Organisations, 1981-1989

H Press Cuttings, 1962-1972

J Patient Correspondence, 1976-1991

K Papers of Linda Lamont and the Patients Association, 1987-1996

The first meeting of the Committee was held on 24 January 1963 with Helen Hodgson in the Chair. Hodgson was a part-time teacher who was moved to set up the organisation by recent events concerning the drug thalidomide, reports of patients receiving the wrong treatment and tests on patients without their knowledge or informed consent. Her aim was to achieve more say, for all patients, as a collective group.

The Association acted as an independent national voluntary body to help patients, in essence to protect and develop the interests, rights and well-being of users and potential users of the health services in the UK. It was probably the first organisation to address this angle of health, being set up before Community Health Councils and many self-help organisations. Its activities focused on the growing tide of patient frustration with the national health services, particularly hospitals, doctors and bureaucracy; the paucity of information on how to make a complaint; educating the public on their rights and responsibilities as patients.

Over the years the Association has monitored trends in patient satisfaction and opinion by questionnaires, surveys and studies; promoted the voice of the patient in NHS and private healthcare, notably via the media; represented the patient's viewpoint to official bodies such as the Department of Health, medical and nursing colleges and professional organisations such as the BMA and GMC; provided an advisory service for patients and their relatives; offered patients the opportunity to share their experiences of the whole range of healthcare services; campaigned on issues such as hospital conditions, waiting lists and visiting hours, standards of care, patient consent, codes of practice regarding use of patients in teaching, subject access to medical records, and confidentiality.

Dame (Dorothy) Elizabeth Ackroyd (1910-1987), consumer rights campaigner, was president of the Association from 1971-1978 and from 1978, until her death in 1987, Chair of the Patients Association Committee. She came to be considered as the heart and soul of the Association in terms of representation on committees and working parties, engagement with the media and attending events. Her influence was illustrated by the fact that many donations had to be returned and re-submitted when cheques were made out to her personally rather than to the organisation.

The Association's original sources of funding were government grants, members' subscriptions and donations from individuals and organisations. By the 1990s it no longer received funding from the Department of Health or any government bodies. At this time it underwent considerable expansion and development, becoming a powerful lobbying group and establishing a corporate members scheme. A list of corporate members as well as information on its current governance and structure can be found on the Patients Association's website.

The following is an interim description of material that has been acquired since this collection was catalogued. This description may change when cataloguing takes place in future:

Twenty-one boxes of material were received in November 2012 (Acc. 1952) consisting of the following papers: additional organisational records of the Patients Association, including minutes and papers of council meetings and AGMs, day diaries, correspondence, media files, press cuttings volumes, papers relating to membership, papers and correspondence relating to corporate membership, files relating to strategy, material relating to various major projects such as the Clean Hospitals Summit, Infection Control Survey, studies and surveys on pain management, depression and anxiety, hospital buildings and environment, papers relating to work as a political pressure group, and back copies of the newsletter Patient Voice.

Eleven boxes transferred in March 2023, with records relating to the activities of the Patients Association from 2000s-2019, including Trustee and Board meeting papers and minutes; CEO papers; Patients Association publications, newsletters, reports, surveys and patient guides; papers relating to conferences and summits; Advice and Information services cases and letters; press cuttings and media; Health Select Committee and lobbying; and other related papers relating to Patients Association's work.