Let me tell you a story – Martin McShane

I recently had the opportunity to listen to a woman whose mother had developed vascular dementia. This is a type of dementia caused by problems with blood flow to the brain and is the second most common cause of dementia after Alzheimer’s disease.

This is what I heard.

A stroke caused her mother severe difficulty in speaking and in understanding the speech of others, along with a change in behaviour. When stressed, her mother would become aggressive. Despite that, she lived in her own home alone, safely, and her daughter managed to care for her. However, it wasn’t easy.

Her mother was on warfarin to improve her blood flow and they had to get her to the GP surgery for her tests. This was a struggle as it stressed her mother and this caused inevitable problems. The fact her mother had dementia was not recorded in her notes, so staff were unaware and administering medication was difficult. They took her to the surgery for a flu injection, as requested. Then a nurse turned up at the house, not knowing it had already been administered, and would have given her the jab for a second time had the daughter not been there. It all seemed uncoordinated and reactive. It felt like a system they had to work against, not with.

Her mother deteriorated over the years and they were given no choice about her end of life care but told she must be admitted to a psychogeriatric ward – for older people with mental health problems. She was given psychotropic medication, which affect the central nervous system and affect mood and behaviour. Blood tests showed kidney problems. Despite pleading with the staff not to transfer her mother, as on previous admissions to hospital the staff could not manage her challenging behaviour on a busy ward, she was ignored. It seemed it was more important to treat the results, not the person or listen to the carer.

Her prediction came true. The hospital unit could not help. Then came the discharge process. An ambulance was booked, but the transfer required two consultant signatures one of whom wasn’t available. By the time the signature was secured, 24 hours later, there was no ambulance.

Her mother died in the psychogeriatric ward some three years after the onset of her vascular dementia. The stress of caring for her mother over those years gave the daughter panic attacks and led to her self employed husband’s business collapsing. Yet, despite that, she wants to help improve the system. This is what she suggested.

If only the diagnosis has been clearly recorded in her mother’s care record, that would have helped.

If only she and her husband had been seen as integral to her mother’s care and their insight, opinion and advice sought – not rejected or ignored – that would have helped.

If only there had been continuity of care, combined with proactive care, with someone or a team to support them to navigate the health and social care system – that would have helped.

If only they had been informed that there was support for end of life care – as they subsequently discovered – that would have helped

There were many instances of kindness and caring during those three years but it seemed to be despite, not because of, the system. Since her mother died she has discovered many instances of good practice but they are not being spread. Why not?

What struck me was that so much of this was about using what we have effectively. Everything needed was, potentially, available and much of it is generic no matter what the condition – diagnosis, recording the diagnosis, advice, information, care coordination, empowering carers, proactive care and care planning. We have the wherewithal – what we need to apply is the will.

Much of this can be driven from the grass roots. Clinical commissioning groups know their local services and practices.  Working to support them to be champions for the change required must be an opportunity to seize?

This post has also been published on the BMJ blogs site.

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