Let me tell you a story.

I recently had the opportunity to listen to a woman whose mother developed vascular dementia.  This is what I heard.

A stroke caused expressive and receptive dysphasia along with a change in behaviour so, when stressed, her mother would become aggressive. Despite that, she lived in her own home alone, safely, didn’t wander and her daughter managed to care for her. It wasn’t easy. The mother was on warfarin. They had to get her to the GP surgery for her test which was a struggle, as that stressed her mother, with inevitable problems. The fact she had dementia was not recorded in her notes so staff were unaware. Administering medication was difficult. They got her to the surgery for a flu injection, as requested, and were glad they were in the house when a nurse, not knowing it had already been administered, turned up to give her it for a second time. 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. She was given psychotropic medication. Blood tests showed renal impairment and hypokalaemia. Despite pleading with the staff not to transfer her mother, as on previous acute admissions the staff could not manage her challenging behaviour on a busy acute 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 acute 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 a 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 had 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, that would have helped them 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 3 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?

Dr Martin McShane is the Director for Domain 2 of the NHS Commissioning Board for England. This role is focussed on enhancing the quality of life for people with long term conditions. Qualifying in 1981 he  undertook training in general and vascular surgery before electing to work in General Practice. From 2004 he has been immersed in commissioning, working for PCTs, Specialised Commissioning and regional networks. He was a member of the National Patient Safety Forum.