PA-TIEN - ENCE!

Being back in the hospital environment forcefully reminded me of how these places can be simultaneously strange, estranged and uplifting.

The morning was spent in Ward 5 at Cherry Tree, where a group of patients made me welcome and we sat together around a dining table that also serves as elbow rest, pillow, reading stand, desk for nurses, sounding board for angry fists and, mostly, a meeting place. Ill health is of course one of the great levellers; with this comes a great mixing of strangers and neighbours. They come quietly, privately together into understandings that are among the most profound that humans share. They also annoy, scare, amuse, alienate each other.

”PA-TIEN – ENCE!”

On this day we talked about patience and how you get it. ("Patience, you learn under sufferance.")

Symbolically, the two people at the head of the table were at the poles of patience and impatience. Richard was bristling with energy and annoyance that he couldn't expel because his 83 year old post-stroke body was beginning to seriously slow with wear and tear. Angela had recently suffered a stroke and was still in the first stages of recovery, but she emanated calm. We chatted around and about the experience of being in hospital and what gets you through. How to observe the collapse of your own body and still not succumb to inner collapse. How to cope with "Waiting, waiting, waiting."

Partway through we were joined by staff member the ever-supportive Susan Hughes. She listened awhile, then told us about Want It Now, or WIN, an acronym used by early teens to describe the process of heavy-pressuring their parents into buying the latest clothing/computer game/hairstyle/generic product for them. The conversation turned to the childhoods of the patients - "We were never prepared for pleasure, we were prepared for work."

Several of the women described in detail cleaning the steps of their houses with the 'donkey stone' when they were very young. The grind of working lives, that began not with work but early childhood. And yet the happiness was there too, they insisted. So how do you make sense of that, I asked.

And in the midst of the replies, Angela raised one finger in the air, and pronounced very slowly but clearly: "PA-TIEN - ENCE!"

Interview: Dr Stephen Watkins

In June, Phil and I had a fascinating, insightful interview with Dr Stephen Watkins, the Director of Public health for Stockport PCT. We discussed the independence of older people, dependency, care and control, choice, being a carer, social roles and patience....

Dr Stephen Watkins
Interview
8th June 2009

There is a gap between healthy life and life expectancy – and that gap is what we must reduce. It’s important that we narrow the gap to delay the onset of dependency, so that people enjoy life longer.

About a year ago I began to find that my right ankle was stiffening. It became difficult going up hills. I told my wife: ‘I feel like an old man.’ I went to a physio, who recognised some restricted movement at the site of an old fracture. She said: do exercises and force through the pain. I followed that advice and have been fine, although I’m slower uphill. Now, if I had been of the mindset that says ‘You’re 58, your life is ending’ I would’ve stopped going up hills. And then gradually I would have stopped walking altogether – a downward spiral.

We need to fight off the expectation of dependency. People have a right to care and will be dependent to a point, but we also have to accept people living with a degree of risk. We don’t stop the young climbing mountains – we must also trust the choices of old people.

This is the difference between care and control. Even when people have accepted a state of dependency they don’t have to lose all choice. You mustn’t become dependent before you really need to – and also when you are dependent, you still should be allowed to make choices, be trusted to take risks.

There needs to be policy that supports this, that recognises there’s a duty of care, but no right to force care on people. These are patients’ rights. In the case of allowing risk, the nature of that decision needs to be recorded. It must be shown that an individual was allowed to make a choice and that there wasn’t negligence, just the allowing of choice. It isn’t actually caring for someone to take away their choice, for instance taking them out of the environment they want to be in.

Being a carer can have a devastating effect on people. Often a carer can become as damaged as the person they are looking after. Sometimes you wonder if it wouldn’t be better if they weren’t caring – if they were able to just visit and be a supporter, friend, advocate. Better that than being trapped in a situation where all the opportunity for loving interaction is gone. Who benefits from that?

These are very personal things, affected by people’s individuality. I’m sure there are carers who would offer support, even if their independence is devastated. But it’s important for statutory bodies to realise that these people need support and can be neglected. This is especially the case in caring for sufferers of dementia who cease to be the person they were. Then the carer is grieving that loss alongside the stresses of the care. I’d like to see more support for carers but there’s a resource issue. That’s why it’s important life expectancy grows, but healthy life grows even more and so the dependency group gets smaller.

That gap isn’t understood. The assumption is that the number of dependent elderly is getting bigger, but this is based on a misunderstanding. The first time the population aged dramatically was when the last generation of large families came of age. Previously there had been high infant mortality so people had large families to compensate. With improvements in medical help the babies lived, but people didn’t change their behaviour and that cohort of unmarried women (the men died in the First World War) created the first ageing population in the UK at the end of the 20th Century. Predominantly female, dependent. People needing care increased because it was a particular demographic with certain needs. People gained a sense that this is what having an elderly population means. But the gender balance has changed, the older men have not been in a war, they’ve faced less occupational danger. People are living to be older, happier, which raises the possibility of narrowing gap. The pension crisis remains but the care crisis doesn’t have to.

The maths is very striking. If healthy life expectancy is 60 and life expectancy 70, then one seventh of the population will be dependent. If healthy life expectancy is say 85 and life expectancy is 90 then dependency drops to one in eighteen. It is absolutely affected by what people do in their 50s, 60s, 70s – we have to get to the people who would’ve stopped walking when faced with my bad ankle. That’s the beginning of dependency.

We need new social roles. At present there’s no protection against unfair dismissal over 65. Things like this undermine the social vision we have to have if we are going to deal with having an ageing population. We have to have a healthy ageing strategy as an economic necessity.

We need patience in public health, because it takes people so long to listen to us. Churchill said the American government will always do the right thing but only first trying every other option. Reactions to public health advice sometimes seem a bit like that. How long did it take to get the ban on smoking? We are very accustomed to patience. Ultimately the health of the people is such a powerful social value that it will in the end prevail.

gummy legs and strokes

As part of the Patience project on Wednesday I worked at Cherry Tree Ward 5 (Rehabilitation ward) in the morning and E1 Stroke Ward at Stepping Hill in the afternoon. Another fantastic day, made the more poignant by the fact that it was my last day running art workshops (at least for a while) due to imminent maternity leave. In the morning, I spoke to the usual wide range of people- suffering from bowel trouble, an amputated leg, back problems, cancer...

We spoke about their condition, their response to being in hospital, their ways of coping. Again this week, I was amazed at how matter-of-factly people could speak of such sadness. For instance, the woman who had had her leg amputated: "Coping. You have to, no choice in the matter. You're here until fit enough to get home, so if you want to go home, put your mind to getting fit quick."
And.
"So had to have the leg off (she smiles) I could sit here and cry for eternity, but it wouldn’t put my leg back. Was a bit fed up at the beginning."

For the first time in ages, we did some drawing. Mary found it hard to tackle problems due to her low confidence - referring right back to childhood, not being able to draw - however she produced a really delightful drawing, which I feel she was quite proud of.


In the afternoon I worked with Stroke patients. I was able to give back typed versions of the pieces they wrote last week (this always seems to please people, to see their work looking formal, 'professionally' presented).

I was able to continue to develop conversations and building relationships with participants and to speak to new people. One gentleman was full of frustration and anger, he seemed so relieved to have someone to talk to: "Been sat on these statements for weeks to try and find the right minded person to speak to. 56 and I was a young 56, but its draining away from me... For the lonely it can be a nightmare in hospital, us and them. Worst thing is not knowing where the nightmare is... my nightmare - the staff changes - the shift changes, not everyone so understanding."

Artwork was in the form of plasters, stuck onto a part of the body that was participants wanted to fix, with letraset writing about their condition.



I'm going to really miss doing the workshops- its really humbling, exhilarating, tiring, inspiring and most of all an honor to share time with people and find out a little of their stories...

Lead soldiers & Stroke

As part of our new project Patience, on Wednesday morning I worked with older people at the Rehabilitation ward, Cherry Tree Hospital Stockport. Seven participants gave varying responses to a collection of toy lead soldiers I brought along to the session. My idea was to develop the theme of the 'brave soldier'.. and 'soldiering on'. Could these ideas relate to how we view our health? Participants chose an photographic image of toy soldiers, we selected a line from their text, which they in turn wrote on the photo, from which I made a badge for them. To my delight everyone seemed proud of their creations, and after photos I left them wearing their text/art.

In the afternoon, I met up with Jean Lally who was kindly offering her services as a volunteer. We had our first session at the Stroke Ward at Stepping Hill Hospital, Stockport. Its always going into the unknown when you start at a new venue: the participants, the staff, the environment all are to be discovered.

We worked with three women, each one shared with amazing candor their experiences - one had been in hospital for 28 weeks and was fighting depression, God and her disability. She was full of anger: 'If I don’t hurry up I’ll be dead.'

Another women was the main carer for her Aunt, the determination to get home - so that she could resume her caring responsibility - was humbling: "To get well as soon as possible and get back to my Aunt that I care for and love - there's only the two of us- just want a normal quiet life, anything would do."

And then there was the woman who spoke in such a matter of fact way about her devastating conditions: "I have not only one problem, not only a stroke but Inclusion Bodies Myisitis- a form of MS or motor neuron a muscle wasting disease. There's no way to stop it, no way to help it, not for me anyway."

All three women shared such strength and determination it was inspiring, an honor and a privilege to talk with them.