Bryan Webster: Failed by a system set up to care for her every need

Published on Monday 29 June 2009 20:28

DEAR Consultant for Patient-Centred Care, I want to draw your attention to our friend (whom we will call Patience) who recently lost her life while being cared for by the NHS. I know you exist because politicians and NHS managers talk about patient-centred care all the time, so there must be someone responsible for it. But, like Richard III looking for Richmond on Bosworth Field, I kept thinking I had found you, only to be frustrated.

We ran into various doctors: our own GP (he lost track of Patience when she went to hospital); the doctor in A&E, who passed her on to the consultant on the ward (who looked for a disease, but couldn't find one). He passed her on to a junior doctor, who passed her on to another, who, although she scarcely knew Patience, signed that she died of bronchopneumonia.

We had already met the community psychiatric nurse of the Mental Health Older Adults Team, but Patience dropped out of his diary at the beginning of the year and by the time we raised him, Patience was already in hospital and beyond his remit. He thought the clinical psychiatric nurse (liaison) at the hospital might visit Patience, but we suspect she never did.

The occupational therapist also phoned to start the process of assessing Patience's needs so that a care package could be put in place. But once Patience deteriorated, we never heard from her again. Then there was the dietician called in when we suggested Patience might not be taking enough food and water. And who, after a few days of sketchy monitoring, left a bottle of supplementary feed on Patience's table – with a straw. I doubt if Patience ever used a straw in her life.

Perhaps you think patient-centred care is the role of nurses on the ward. I'm afraid the life of a nurse is too erratic for that. In a ward like a transit camp, nurses fiddled with bleeping equipment, made beds, cleaned patients, dished out medicines, escorted fugitives back to bed and wrote up notes in the corridor. "My hand aches at the end of the shift," said one.

It seemed that whenever we went to talk to a nurse we found a different one. No wonder! After three shifts of 12 hours, the nurse-in-charge disappeared for four days. When she came back, most of her patients had changed. How could she possibly keep anyone in the centre of her care?

So, in spite of coming across all these busy – and often, caring – people, I failed to find you. So this public letter will have to do.

Patience was a frail old woman with dementia. I am sure that was how your medical colleagues saw her. But before she went into hospital she had not spent a day in her bed for years, had a daily routine, a little dignity and the surrounding affection of relatives and friends. It wasn't much of a life: regular light meals prepared by her sister; a little dusting; drying dishes; listening to music; eating chocolate eclairs; telling old stories to friends; a run in the car; a short walk in the sunshine, a well-kent carer popping in to give her a bath; a hairdresser to tend her hair and a chiropodist to tend her feet; a little banter on her way to bed at night.

It wasn't much of a life, but she enjoyed it. Then she had a slight fall, was taken into hospital with a suspected chest infection and lost her life. It was swept away within hours. It was swept away because her care was not patient-centred. How could it be when no-one asked the right questions?

Oh, questions were asked. Questions about her health she could not answer. Questions she did not understand about what she wanted to drink and, by way of a form, what she wanted to eat. In A&E she was humiliated by 20 questions culminating in "who is the monarch of the country?" But the questions that needed to be asked were not; questions that would have been instinctive if care was patient-centred – questions that might have saved her life.

There were two: of what does her life consist? And, what must we to do to preserve as much of it as we can? The first, on which the second depends, could only have been answered by one expert: her sister who cared for her. But she was never consulted.

She would have reported that Patience could eat and drink by herself, but needed prompting and given soup and rice pudding, chocolate biscuits and regular cups of tea; that Patience needed to walk to keep mobile; that she needed stimulation to keep her fading faculties alive.

But her sister wasn't asked, so Patience's flickering life was snuffed out by carers who didn't know how to keep it going. For Patience it is all too late, but I invite you to see her, not as a rare exception who slipped between the cracks, but as a marker of a deficient system of care. For if patient-centred care is not there for the likes of Patience, it is not there for anyone. That some patients manage to negotiate their way through the labyrinth that is the NHS should not blind you to the fact that many get lost in it, some totally.

For if care is to be patient-centred, you must first discover what the patient's life is centred on. Those at home know. Let them hand over to someone with a face – a Val, a Julie or a John who will take care to preserve such life as the patient enjoys.

I suspect, Mr CPCC, that you will argue that such meticulous care is impossible for the NHS. In which case may I pose another question: if the prime task of a national health service is not to preserve life, what is it?

Yours sincerely, Bryan Webster.