A lot is said about the challenges facing social care from care providers and their representatives and from government. Rarely do the perspectives and reflections of someone living from the beginning to the end of a journey through social care get to be voiced in quite this way, however.
What Would Maggie Do? is a book written by Michael Maslinski, who lived in a care home for 9 years with his wife Maggie, after she was diagnosed with dementia. Michael describes the beginnings of his wife’s condition, how they both prepared for the future, the challenges faced once Maggie eventually needed residential care, and why Michael chose to live with her in the home. It contains advice for anyone about to take a similar journey, and a timely critique of how the health and social care system’s structures, processes, regulations, and attitude to risk have reduced the system’s ability to deliver care tailored to the well-being of the individual.
Mr Maslinski said:
“Having lived for nine years in a care home beside my late wife, my focus now has been to use my rare, if not unique, experiences of how decisions are made in the care sector to allow others to have a genuinely individualised, or “person-centred” experience of the system.”
Michael detailed in the book the challenges around keeping his wife mobile during her stay, including daily walks, which ultimately he believes strongly contributed to her longevity and quality of life. Despite the apparent benefits, regulatory pressures and an impersonalised approach to risk often threatened to end Maggie’s regular walks. While most care home residents don’t have a family member on site as much as Michael was, his perseverance as an advocate for his wife kept her moving. This was just one of many examples of how Michael had to challenge the system to ensure his wife’s needs were not subjugated to standard processes and regulations.
Professor Martin Green OBE, Chief Executive of Care England, added:
“Michael has produced a fantastic book in which he goes through all the issues related to supporting somebody who’s living with dementia. One of the things that really came through for me was the fact that we need to shift the system from being risk-averse to being risk-aware. Ensuring that those who don’t have such a forceful advocate so close to hand can still benefit from the person-centred care that clearly kept Maggie moving and allowed her to live a better life for longer.”
Mr Maslinski also challenged how the NHS approached risk when he had to battle to have relatively minor surgery carried out to keep Maggie physically well, where doctors initially felt that the advanced dementia made the procedure not worth the risk.
Michael has since been giving talks to the management of care home groups, discussing his experiences, and has noted how care staff have been using the book:
“When I visited one care home, I saw that a senior manager had been using my book, with lots of stickers marking passages that they had been referring back to. It means a lot that this book is already making a difference, and I’m continuing to share this knowledge, especially now during Care Home Open Week.”
The book ends with recommendations to care providers, regulators, and the families of those navigating life with dementia. Mr Maslinski and Care England hope to share his story throughout Care Home Open Week and beyond, with Baroness Casey’s “national conversation” due to begin this year.
For further information and to order the book, click below:
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