An attempt to contribute towards a patients' history of the NHS, 'Ordinary People Tell the Story' highlights how expectations have changed over the decades, people's positive and negative experiences of the health service, and also the strong commitment to the founding concept of the NHS.
The study authors have drawn on 60 years of comments by patients and health practitioners to make their own recommendations about the future of the NHS and how the highlighted issues ought to be tackled.
The study provides colourful accounts of people's encounters with the NHS at three points in its history: 1949, 1997 and 2008. These accounts are taken from the Mass Observation Archive, kept at the University of Sussex, which specialises in material about everyday life in Britain. Short extracts have been chosen from among hundreds of vividly written responses, to illustrate the themes which have been consistently important to the correspondents.
The study was compiled by Linda Lamont, a former Director of the Patients Association and Honorary Fellow in Contemporary History at the University of Sussex, and Fran McCabe, who spent 40 years working in health and social care and has an MA on the history of the NHS through general practice from the University of Sussex. Lamont and McCabe received support from a Wellcome Trust History of Medicine grant and from the Department of Health.
The NHS was launched in July 1948. Prior to that, healthcare was provided by a mixture of private, municipal and charity schemes. This led to inequalities between different regions and many people unable to afford healthcare. In the 1949 records, the report shows - unsurprisingly - that people were grateful for the services they had not been able to afford before the NHS began. By 1997, and increasingly in 2008, people's expectations are higher and they are more prepared to be critical when their needs are not met.
However, throughout the 60 years, there is a strong, often passionate commitment to the founding concept of the NHS. The majority of people whose accounts appear in the archive demonstrate their need for it to continue and their desire to support a health service free at the point of use.
There are many examples of caring and compassionate health services but some concerns arise with increasing frequency over time, including: lack of cleanliness and fear of hospital infections; decreasing standards in nursing care, especially for frail or elderly patients; confusing and frightening experiences during long waits at Accident and Emergency; and a lack of privacy and dignity in overcrowded wards.
People were generally happy with the care given by their own GP, but complained about problems with telephone appointment systems and reception staff, long waits to see their named GPs and problems of access for out-of-hours care. There was a widespread shortage of NHS dentists. They wanted more recognition by the state of the increasing responsibilities placed on carers by our ageing society.
Finally, the study looks at the attitudes of correspondents towards contemporary ethical issues, such as organ donation, fertility treatment and assisted suicide, as well as political debates such as the future NHS and how it is funded.
"The work I have done over these years from a patient's perspective has convinced me that the majority strongly support an NHS free at the point of use," says Lamont. "They see it as an irreplaceable institution. What is now needed is a patients' history of the NHS as evidence of the bedrock upon which it is based. There is no substitute for people's own words about their experiences and views. We hope that this study, with its use of the mass observation material, provides an important part of the patient's story."
McCabe adds: "The mass observation material gives us an absorbing and vivid perspective of the NHS going back to its birth. We should not forget that despite its problems, without the NHS many people, especially those without means, would not be alive today.
"People who have contributed to the Mass Observation Archive are reflective and prescient about the strengths and shortcomings of the NHS. They are aware of its complexity and discuss contentious issues around ethics and funding, sometimes suggesting solutions. Even when they have had problems using the NHS, they still hold its values to their hearts."