The formal launch of my book What Would Maggie Do? at the House of Lords last week confirmed what I had already realised from the huge response to pre-launch publicity, particularly in the Telegraph and on the Today programme. Many senior leaders in the sector were already recognising the need for cultural change across the care system. In narrating my unique personal experience of living in a care home for nine years with my late wife, I merely found the words to focus minds on what was already troubling experienced professionals. Speaking at the launch, Professor Martin Green, CEO of Care England and a well-known spokesman for the sector, passionately supported the book and the need for a change in culture, saying that “the care system operates under a stifling bureaucracy and the straightjacket of grossly excessive risk aversion”. In addition, he said, “the system is institutionally ageist”, depriving elderly people of simple treatments on spurious grounds such as communication problems. Vulnerable and elderly people, especially those with dementia, need to be cared for, not processed, and the system needs to be refocused on the needs of the individual patient or care home resident, rather than feeding them through a machine where one size fits all. For all the love and care which many residents receive, crucial decisions on health and welfare too often ignore individual circumstances and seriously damage the lives of the very people the system is meant to protect. Whilst society agonises over the morality of assisted dying, it seems deeply ironic that hundreds of thousands of people in care homes are at the mercy of systems and processes which sometimes shorten their lives without their consent, often ignoring the views of their relatives or legal representatives. Whilst others can take the decision to end their lives, many care home residents are not even permitted to go for a walk because the risk of a fall would reflect badly on the care home statistics. The main reason for this is that a system has evolved which feeds on itself, lacking the input of customer feedback, such a vital tool for keeping most organisations relevant to the needs of their customers. And it is not just care homes we are talking about; it is the whole care system, including a variety of professionals, from carers in care homes to consultant surgeons in hospitals, physiotherapists, speech and language therapists, and even mental health professionals. Let me be clear: I have had a very positive experience of most such professionals and do not for a moment wish to cast doubt on their dedication and professionalism. Many of them are admirable. It is not the people who are at fault, but the system which puts them under severe pressure to make decisions about their patients, excessively influenced by the need to protect themselves against regulatory sanction or potential litigation. Unfortunately, protecting themselves, as well as being very time-consuming and costly, does not always coincide with the patient’s best interests. There is real fear across the sector of making decisions and professional judgements which depart from standard practices and protocols, yet just one wrong decision can seriously damage or shorten the life of a vulnerable patient. My unique experience That, in any event, is my clear experience. When my wife had to move into a care home because of advancing dementia, I moved in with her and mostly lived with her there for nine years. I did not then realise this was such an unusual thing to do, and I did it because I thought my presence alongside her would ease her distress. But my presence meant far more than companionship and love. It meant I was uniquely placed to supervise every aspect of her care and make decisions on her behalf, as was my duty and her wish. I called the book What Would Maggie Do? because this was the last question I would ask myself before making a decision: what would she do if she were making it for herself? One of the things that shocked me in the care system was that too many professionals were rather confused that I intended to make all decisions on my wife’s behalf. They seemed ingrained with the notion that her “best interests” lay in following procedures, protocols, and regulations, rather than interpreting and adapting them to individual needs and wishes, in this case expressed through me as her appointed advocate under power of attorney. I sometimes found myself in deep and protracted disagreements with a variety of health professionals, and on occasions I even had to bring in my own experts to argue my wife’s best interests. Senior doctors have opined that, but for my interventions, my late wife would have died at least five years earlier than she did, and her quality of life would have been seriously diminished. I must make clear that the basic care was normally superb. The carers and other staff were quite wonderful, the other residents delightful company, and for most of the ...