Patients Association Archive Available in the Wellcome Library

Readers may have observed recent media publicity following publication of the Patients Association's report 'Patients... not numbers, People... not statistics' in August 2009. In this report the healthcare charity focused on poor standards of nursing and domiciliary care for the elderly, highlighting the difficulties that patients and their relatives have encountered in access to information, communication with health authorities, and the complaints investigation process. These and many other aspects of patient care are issues examined and discussed in detail in the archive of the Patients Association which has recently been catalogued and is now available to historians and researchers.

The Patients Association, a registered charity, was founded in 1963 by Dame Elizabeth Ackroyd (1910-1987), civil servant and consumer rights campaigner. It was set up as an independent national voluntary body to protect and develop the interests, rights and well-being of users and potential users of health services in the UK. The Association was probably the first to address this angle of health, being set up before Community Health Councils and many other self-help organisations. Its activities focused on patient frustration with the National Health Service, 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; promoted the voice of the patient in NHS and private healthcare; represented the patient's viewpoint to official bodies such as the Department of Health, medical and nursing colleges and professional organisations such as the British Medical Association and General Medical Council; 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.

Elizabeth Ackroyd virtually ran the Association from its early days until her death in 1987. She was president from 1971-1978 and from 1978 chairman. She was considered to be the heart and soul of the Association in terms of representation on committees and working parties, engagement with the media, attending events, and (with a small industrious staff) the day-to-day business and running of the organisation. A source of formidable energy and enthusiasm, as well as running the Association Dame Elizabeth held prominent roles in the Consumer Council established in 1963, the Consumers’ Association and numerous other voluntary organizations.

The Archive has been allocated collection reference SA/PAT and comprises 112 boxes. It is divided into ten sub-sections and covers the history of the organisation from its establishment in 1963 up to about 1996. It contains material relating to the organisation and administration of the Association, correspondence with numerous voluntary, professional and other health related bodies, files on a wide range of health subjects, publications, press cuttings and patient correspondence (the latter is however closed for a specified period in order to protect the confidentiality of individual members of the public).

The catalogue can be viewed by entering ‘SA/PAT’ in the reference field of the search interface of the Archives and Manuscripts online catalogue. To navigate around the catalogue click on the light blue numbers on the left side of the results page and the ‘See this in context’ links.

The papers are available subject to the usual conditions of access to Archives and Manuscripts material, after the completion of a Reader's Undertaking. Please note that parts of this collection are subject to specified restrictions or closure periods for the purposes of data protection.

It is hoped that the Patients Association archive will provide valuable evidence of the concerns of patients from the 1960s through to the mid-1990s and thereby also a basis upon which comparisons can be made with issues affecting today’s health service consumers.

Author: Amanda Engineer