This week we are exploring the topic of independence, one of our key values. The reason I am discussing this is because I’ve recently re-read the book Being Mortal by Atul Gawande. It is a very moving and uplifting book which shaped the way I worked in health and social care and how I think about promoting independence. If interested you can find a Radio 4 discussion of Being Mortal on BBC iPlayer.
In 2016 I changed direction to work in care because I was angry at the way my neighbour was treated when she went into respite care after breaking her arm. She went into the care home with full faculties and physically was ok. But the home she was placed in eroded her independence and wellbeing. It happened so fast.
Her health deteriorated because staff failed to understand the Mental Capacity Act (MCA) and they lacked curiosity about who she was and what her interests/skills/abilities were. I witnessed the way the staff interacted when I visited. It was paternalistic and devoid of any life. My neighbour was a woman, who had a sharp mind for details, a passionate gardener, loved interacting with all the people in our neighbourhood, a crossword fanatic, and used to work in health.
Yet she was seen as a non-entity in the home. There was a beautiful garden at the home, and on my first visit, I suggested we go out into the warmth of the sun and look at the flowers. The immediate reaction was ‘no you cannot get out, the garden is locked.’ This stunned me. Was there any stimulation inside – no. The residents were all sitting in their chairs with no interaction with staff or other residents. This home was supposedly “Good” according to the Care Quality Commission (CQC). This is not a word I would choose to describe such a soulless place.
A Different Approach
This is where Being Mortal offers what is possible. Being Mortal talks about giving individuals autonomy no matter how frail or ill the person is in their care. Gawande shares many examples of where individuals have ended up losing their identity and autonomy all in the name of keeping people safe. This is not what care homes and independent living should be about.
I applied for a care home manager position shortly after the experience with my neighbour’s care because I was so angry and convinced that I would create better environments. I believe that promoting independence in health and social care is necessary and entirely achievable.
Better care is possible because we have legislation in the UK which, when followed well, can enable staff to respect an individual’s autonomy. The Mental Capacity Act (MCA) is fantastic when it is understood and applied well. Too often however, staff jump to best interest (even then not from the perspective of the person) without checking through the first three stages. As a disabled person I know what it is like for people to make assumptions that are not correct. Therefore, I was determined to ensure the voices of individuals in our care were heard and recognised. This applied to everyone including non-verbal residents.
In Gawande’s book he shares some great stories where one individual can make a huge impact. This is why we need more people to be those individuals, who understand what it means to enable people to make choices and decisions that matter to them.
The Results of Change in Care Settings
Going back to 2016, I did something that very few managers would do. That was to spend my first six weeks just listening, and observing residents, staff and family members. This gave me a great insight into the significance of small things that make a difference. It made me follow the MCA and the Care Act very closely to enable all to flourish with choices that mattered to them. The staff team were brilliant when they too were encouraged and enabled to spend at least 15 minutes a day just listening and engaging with residents in their own time. The relationships changed and led to talents and skills being shared from all within the home – staff, resident or family member. They all had something special to share.
What is ‘Independence’?
Occupational Therapist, Alice Hortup shared an article, Should ‘Independence’ be at the Heart of OT? (8th March 2023). Here Alice shares how she had to re-evaluate the word independence in her role. She discusses how we are all inter-dependent and that the emphasis on independence rankled with her. This word could be seen as ableism. I had not seen it in that way before but when Alice started talking about “autonomy” this made sense.
This linked well with Gawande’s point about the over medicalisation of hospitals, care settings etc to fix people and/or keep people safe. Gawande’s perspective of medicine changed over time when observing geriatric doctors and hospice nurses. He listened and observed people with multiple health conditions and/or disabilities living well and with satisfaction. The key was about supporting individuals holistically and listening to what mattered to them. This provided individuals with more autonomy, choice and control, making life worth living.
The reason why we need to explore this further is because the regulators themselves have much to blame for the heavy emphasis on health and safety in care and health settings. With Covid this came to a harsh reality where patients and residents were treated differently long after restrictions of our lives had been lifted. Things we take for granted, seeing friends and family, were denied and still are being obstructed in some places. This is not acceptable, yet CQC is still disregarding basic rights like this.
Regulators in Health and Social Care
Regulators are not the only ones to have failed to understand what is important. We also have regulators in education, who put far too much emphasis on results, conformity, uniform and styles of learning that are not suitable for many. Regulation has lost sight of the children and teachers. The loss of curiosity as a quality in many children is not a coincidence. Our education system is broken, all the emphasis is on training to pass the test rather than exploring subjects for their intrinsic interest and value. We have tragically lost a head teacher recently to suicide because of relentless pressures on things that don’t matter.
In health and social care far too many good managers and owners have left with ill health and burn out because of relentless focus on the wrong things together with the lack of recognition and pay. Residents and patients are dying of loneliness and boredom because their lives have been wrapped in cotton wool with no prospect of doing things that matter to them like visiting, doing activities that interest them and more.
What We Can Do
Why are we allowing these experiences to be perpetuated? Part of the problem lies in the fact most of us put off discussing what we would like to see happen to us until too late e.g. when a crisis happens. If we all could re-evaluate and share what we would like this may help create the communities and support we need in health and social care. This needs to be for all ages, where access to activities, hubs, shops, culture, libraries, rehabilitation facilities, green spaces, houses/flats with access to support are available in all communities. Ideally communities should have most of their amenities within 15 minutes walk away because this helps get people out locally leading to relationships that can be fostered to support one another.
Find out more about our services, helping care teams promote independence, wellbeing and choice for their residents and patients.
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