1.3 Understanding personalisation: the patient
We start by looking at what it has meant to be 'a patient'.
One of the arguments for personalisation is that, to some extent, categorising people as ‘patients’ has led to people being depersonalised (Taylor, 1979). That is, people's wishes and requirements – despite the best intentions of professionals – have sometimes been ignored or dismissed. At times patients may be seen first as a body, a disease or a biological process and, only some time after that, as a person (Goodrich and Cornwell, 2008).
From the mid-nineteenth century onwards, hospitals and their organisation have been seen as a major focus of the delivery of health care. The status of medical practitioners grew with the growth of hospitals – at first located in cities and then through offshoots such as ‘cottage hospitals’ in rural areas.
Health is not just about hospitals. But the way in which hospitals were organised has hugely influenced relationships between patients and professionals like doctors and nurses. While most people in the UK value the NHS and the care they receive from the health service, one of the reasons that people may have felt (and sometimes still feel) failed by health services is because they are seen as impersonal and even depersonalising. One patient talked about feeling like a parcel and a consultant talked of patients as ‘pushed around like a piece of packaging’.
With every move, patients and relatives worried that the knowledge about them fell away. Arriving in a new environment, with a new group of staff, they would have to begin building relationships again from scratch. One very elderly patient was moved twice in the same night, once at 2 a.m. and then again at 5:30 a.m.
She was treated like a parcel. The junior doctor on one ward ordered tests but she moved before the results arrived so they were never received. In one of her moves, she was taken by a porter in a wheelchair to the door of one ward. The nurse in charge came to the door and barred the way, telling the porter: ‘You’re not bringing her in here.’ My mother felt anxious she would be lost inside the system.
Activity 1.3 The experience of being a patient
The videos below feature Margaret Scally. Margaret was admitted to Waverley Park Home, an institution established for the care of 'defective and feeble minded children', when she was six years old. At the age of 16 she was transferred to a long-stay hospital called Lennox Castle where she lived until the early 1990s. She was interviewed about her experiences in Lennox Castle during the 1990s. More than ten years later she was interviewed again. This helps us to contrast her experience as a patient and as a non-patient, and between being a child and an adult in institutional care.
Transcript: Margaret Scally interviewed in 1996
Caption: Margaret Scally, Lennox Castle Resident 1968–1991, Interviewed in 1996
Caption: Ward Living
Caption: Going out
Transcript: Margaret Scally, interviewed more than ten years later.
In the first video Margaret talked about how her care in hospital was organised. Although she was given medication there are hints that this was provided in order to make Margaret’s behaviour more manageable rather than to meet a definite health need. The discussion about ‘punishments’ raises many concerns,especially when you remember that she was a six year old child when she first moved into an institution. Perhaps it had more to do with orderly group living within an institution than health care?
In the second video you heard how, since she left the hospital, Margaret has taken (and sometimes been supported to take), increasing control over her life – where she lives, how she spends her time and who she spends it with. She also decides when to ask for support and how to use this support. These changes come over as quite dramatic, although we should not view life for Margaret in the community through rose-tinted glasses: there is still much to do to ensure that, as a society, we afford the same rights to children and adults with disabilities as other individuals in society.
When she was in institutional care Margaret was relatively powerless to influence how she lived her life in the face of the power of professionals. Of course it is true that during the twentieth century many people in the UK received a good service from medical and nursing staff in hospitals and the community; nevertheless, in Margaret’s account we can see direct evidence of some of the negative impacts of institutional life and of the potentially damaging impact of professional power.
Professional knowledge is important, but it is also very important not to exaggerate its significance. The Austrian philosopher, Ivan Illich, described the mid-twentieth century as the highpoint of what he called ‘The Age of Professions’ (Illich, 1977). He predicted that we would look back at the dominance of professions of this time as a harmful folly.
The next part of Section 1 will explore how the development of the social work and social care professions began to influence formal care relationships.