Three ideas for improving care from a barely coping carer

As I walked through the office door on Monday morning, my assistant told me that my first appointment had been cancelled. I admit to sharing some annoyance, but then he told me the person I was supposed to have met – a very well known national figure in the healthcare scene – had written me an email explaining why she'd had to cancel.

‘It’s a long story’ she began, ‘but I’ve got elderly parents. My Dad is in hospital, medically fit to be discharged and my Mum who has dementia is home alone and unsafe’.

Immediately this struck a chord. I remembered a similar conversation with a very senior NHS clinician, just a couple of weeks ago, who spoke of clocking up miles of motorway each weekend driving to be with his elderly parents.

Then there are my own parents and in-laws who between them have notched up four hospital admissions in the last three months and live with a complex mix of long-term conditions, including dementia. ‘All you can do’ said my mother’s caring GP, ‘is to lurch as elegantly as you can from one crisis to another’.

And what crises! One of the four falls off their chair and needs to go to hospital for an X-ray; another is found on the bedroom floor and can’t get up; another gets lost on the way back from visiting a neighbour; and another gets an infection that means her partner has to be found a short term care home place.

So it goes on. Relentless. Exhausting. Far more stressful than anything work can throw at you. Makes bringing up children seem like a breeze.

So, here’s three ideas from a barely coping carer:

The standard of care my parents and my in-laws receive is generally of a very high standard. That said, with the exception of my parents’ GP, the more senior and well paid the staff they interact with, the less there is an understanding of their emotional, communication and physical needs.

Best by far are the low-paid, unqualified community-based and residential care home staff. Much maligned and, according to the Francis Report, in need of registration, in my experience they show care, compassion and practical common sense way beyond the call of duty. They are saints.

This compares with the mumbling and insensitive psychiatrist, the hapless out-of-hours doctor and qualified hospital staff incapable ensuring the patient leaves with the correct drugs. So, when investing in training staff to understand the needs of older people in general and those with dementia in particular, start with the most senior and make it mandatory for doctors and senior nurses.

Next, while individual episodes of care and treatment are usually fine, it’s the lack of co-ordination between them that causes the stress and anxiety. Is it really necessary for the ECG electrode pads used by the out-of-hours doctor, the ambulance service and the hospital to be different?

Think of the discomfort to a frail 93 year old of them being pulled off each time just to be replaced by new and different ones. Start with some simple end-to-end waste elimination changes that save money and improve quality. Ask the carers what these should be.

And last, why do we have to find out what is available by some process of trial and error? Apparently there is council tax discount available for those deemed to be severely mentally impaired. Why did nobody tell me?

There is a falls service that avoids an elderly person being whisked off to hospital every time they fall and don’t injure themselves. How many unnecessary admissions were necessary before I saw a leaflet about this in a garden centre? So, let’s make sure for each community there is a single point of access for carers to get help and information.

Meanwhile, if you are one of the many healthcare professionals reading this who are going through similar experiences, do reply. It’s good to share.

Stephen is Chief Executive of the Health Foundation