different strokes

Great to see more people visiting and linking to our sites, heres an interesting notice board who have done just that.
http://diffstrokes.webfactional.com/

Interview with Fraser Burton, Diabetes specialist

Diabetes: explain it in user-friendly language. That’s my job. The first bit of news isn’t so friendly. Diabetes is a chronic condition, it’ll be the thing that probably kills you. But there are many things you can do. You want to get rid of that label. Stop putting that label DIABETIC on your forehead. We put you right back into the middle of your peer group. We do that but we keep you safe.

What are the myths? People say that it’s a disease that stops you eating sugar. People say they ‘fall over’ with it – they actually go unconscious and then fall. There’s a myth that you can’t eat bananas or grapes, that’s a misnomer. People can eat anything they want in moderation. We say: eat a handful size. The main myth is that someone who has diabetes is insulin dependent.

In hospital, 10% of people will have diabetes. Most people here in Stockport will know someone who has diabetes. These people will get injections in later life. Nowadays we’re proactive with medicine. People with diabetes are one of the best looked-after groups in the country. We deal with people as a team of doctors, nurses, dieticians, podiatrists, and we bring in other specialists. Our job is to allay fears. Reassurance.

I have Type 1 Diabetes, was seven years old when I was diagnosed. I’ve done all the things you do when being a manic teenager. That’s what I tell the youngsters – you can still have your life. For the older generation, it’s explaining that they can still operate quite normally. Fit the diabetes around your lifestyle.

Type 2 Diabetes will be treated with lifestyle measures and tablets, a whole menagerie of tablets, and insulin injection too. People think its bad because it’s an injection. Think it’s worse than it is – associate it with hypoglycaemia and weight gain and sticking a shard of metal into wherever. They expect an injection to be something big and medical Hattie Jakes would use. But our needles are tiny, we don’t inject insulin into veins.

We have the grieving – a recognised circle of feeling. Anger, denial, acceptance. Most people accept it and get on with it. But denial (‘I’ll eat what I want’) and anger are part of the circle and will continually come round. If you have had things taken away from you – like chocolate – you will feel anger sooner or later.

For instance, if you are on insulin you can no longer drive certain vehicles. We negotiate medication with bus and taxi drivers. They fear, ‘My god I’m going to lose my job.’ Self-help groups are excellent for dealing with these fears, they have a massive input. There’s a lot of support – it’s actually very costly – 8% of the NHS budget goes on diabetes.

I can remember my first injection, I sat on the Sister’s knee and did it. Fantastic, look at me! I self-injected for a week. Then I reacted – ‘I don’t want to do it anymore!’ That was my circle of grief, coming round the first time.

We’re getting better at treating it, but it’s getting more prevalent. Firstly because we screen more aggressively. Secondly, we’re all getting fatter through lack of exercise. Diabetes isn’t just something that’s restricted to older people. The kids are getting adult onset diabetes earlier, because they’re not exercising.

The patients are not being blamed, but we are trying to put in place things to increase exercise and improve diet. Diabetes is an easy thing to deal with, but to encourage patients to go with your suggestions is easier said than done. For example, smoking and diabetes go hand in hand, smoking makes you many times worse and vulnerable. How do you stop the bad habits? People who are motivated will flip out of that at some point. Who finds it hard to cope with the restrictions? The people who don’t cope is everybody – it’s just the length of time that they opt out of the diabetic system that alters with the individual.

I know someone who was a bad lad – a lot of naughty habits - didn’t make any allowance at all for being diabetic. Complete denial. Now he’s got holes in his feet and he’s at risk of amputation – and he’s the most responsible patient you could meet.

When I was younger, I went travelling. I was in Yugoslavia at a railway station and I needed to inject. I went to the ticket office to ask if there was somewhere I could do it, but they didn’t understand me. I didn’t speak their language. Eventually, I injected on the platform. Looked up and there was a circle of gun muzzles around me. They arrested me – and I was saying ‘I’ve got to eat something in half an hour!’ It was three and a half hours before the interpreter came and I was in a bad way by then. Travelling was a risk, but it was calculated. Fit the diabetes around your lifestyle.

For the rest of your life you go around the circle – anger, denial, acceptance. For most of your life we hope you’ll stay in the acceptance stage. Encouragement, support, good pharmaceuticals – that’s what people need and what we try to provide.

Research is key – improvement in diet, lifestyle, drugs, machinery to test blood and so on. Insulin has only been extractable since 1922. Before that, if you had Type 1 Diabetes you were dead. We treat it as a whole team: doctor, nurse, dietician, physiotherapist, wheelchair exercise people… It’s not just in every part of the body, it’s in the head. It’s global. A big, big jigsaw of attitudes. You have to take it apart and put it back together again.

The best patients take on information bit by bit, they’re prepared to wait. Ongoing diseases go on. The information, the research, changes. You can’t expect to have this information immediately, you have to be patient. People who have the time and resources to learn about it deal best with diabetes. The patients need patience to listen. But the care staff need patience to listen to the patients!

When I was diabetic as a kid I got given five needles a week. My dad was an engineer and used to sharpen them for me. My mum would boil the syringes on Sunday. I can still smell the surgical spirit.

Fraser Burton was interviewed by Lois Blackburn and Philip Davenport

the inner part

in last week and three weeks before

bowel trouble

(nice)

test me kidneys

mind going round

which is what and what is

ignorance last week and three before

toboggans into bowel trouble

embarrassment

that you need

to tell them inner

things

(nice)

ungrateful bowels

heart and me blood test

results

unconvinced

test me test me trudges up

mind going round to ignorance again

anonymous 8th July 2009

image © Lois Blackburn 2010.

for more examples of arthur+martha poems, please visit http://arthur-and-martha-poems.blogspot.com/

Seeing

Today, gathering to write a poem with a group for people with visual impairment. It's a rowdy group full of humour and argument, chaired in rascalish style by Vincent and Ann at Walthew House in Stockport. Although we hopped from discussing the smell of books tthrough to the potency of Spanish gin and many other diversions, the conversation crucially turned around ideas of blindness and learning to see our own attitudes towards it. It struck me over and over as we talked that the really dangerous blindness is in areas of thinking.

To live with a visual impairment needs a huge shift in thinking if you've been sighted. As Ann said, "First you need acceptance of your situation. Then comes acceptance of help."

And then of course, to be accepted by other people often requires a shift in their attitude too. I heard stories of everyday stupid intolerance, of men being ashamed to be seen guiding another man, of collisions with people who dont notice the white cane, and of a very sad rejection of one individual whose family simply were embarrassed by the blindness. But then there were the uplifts, the little moments of kindness. As one man said, "There's not a single time I go out onto that street that I don't get offered help."

It was a curious morning; to both laugh and be angered in the company of these friendly, welcoming strangers.

Interview with Sister Julie Hopwood. Rehabilitation Ward, Cherry Tree Hospital

I knew what I wanted to do this right from leaving school. I wanted to be a nurse, and I wanted to work with older people. I had always had a great affinity with my grandmothers and older adults. I knew it was a Cinderella Service, but I felt prepared to meet the challenge. I did an A-level pre-health course at Stockport College. At eighteen I started my nurse training at Withington Hospital. As a newly qualified staff nurse I went to Barnes Hospital and did stroke care. I was fortunate, and became a ward sister within a short period of time here at Stockport. I hope my early appointment was attributed to my enthusiasm and drive to make a difference in this area of care.

I started my job as a ward sister at the same time as a newly appointed charge nurse. It was a good partnership. We had both been trained in the South Manchester at same school of nursing. The ward had both the benefit of a male and female perspective. Together we made changes – nurses were encouraged to owned the care they gave. We allocated specific nurses to specific people – it encouraged a deeper relationship – if you look after somebody day after day, you don’t just talk about the weather, you talk about real issues and what concerns them. Care needs to be personal and individual to give the greatest benefit. People think older peoples medicine is about incontinence and dementia. It’s not. It’s about adults who are ill – often with combinations of illness and complex care needs. We should adjust our ideas because people now stay well longer. We are more likely to give elderly care in all specialities of the healthcare. Care of the future cannot discriminate against age.

We offer dignity and respect, by discussing and offering patient’s options. It’s about control, offering choice, giving the patient control. Even as simple as: “ Do you want to wear this, or this?” At one time you did what the doctor ordered. Now, you get options, you are still an adult, not a lesser person because you’re elderly.

Older people have amazing life experiences. They’re an interesting group to work with. They saw the world when it was a different place. You can also ask the question: when are you old? A 65 year old can have an ‘older’ outlook than a 90 year old who is a fighter and has lasted through many changes in life. There was a lady I looked after who described how she used to chew the bed-sheets at night when she was a child, because she went to bed so hungry as a consequence of living in poverty with a very large family. How different times are now. Now we look after elderly people who carry mobile phones!

Even in my time of being a nurse, I’ve seen changes in care. If you were a patient with incontinence, you had to wear a pad and particular adapted clothing, almost a uniform. Pain management – now instead of injections, we have patches that absorb into the skin. We also have a more positive attitude towards death. With good management, you can have a good death experience, pain controlled, nausea managed, psychologically supported.

In elderly care, we assess for scales of depression, which can affect recovery – if you come in here thinking you’re going to die, it doesn’t help recovery. We discuss the need to use antidepressants if a low mood is identified. Lack of motivate hinders the recovery process. Treatment with antidepressants though may take two or three weeks to start a therapeutic effect and that can impact on the length of stay in hospital. The emphasis now is to get people out of the hospital as quickly as possible once they are medically fit.

The focus in rehabilitation has changed. It used to be non-acute care or convalescence in a hospital setting. Once rehabilitation patients were medically fit but frail and in need of therapy in a hospital setting. Now rehabilitation aims to happen out of hospital; in your own home, or in an intermediate placement at a residential home. Decisions about discharge destinations for rehabilitation are usually made considering night time safety and social circumstances. Hospitals are going to struggle with meeting care needs in the future as our population grows if it does not do things differently. Hospital stays aim to be about acute care, you come here if you are medically unwell and are in need of active medical intervention that cannot be met in the community.

Florence Nightingale said hospital should do you no harm. But if you put sick people together, you put them at risk. At home you are safer, if you can self-care. If people self-catheterise, they’re less likely to get infection. Same with self-care of emphysema, the emphasis now is training people to recognise they’re getting ill and to treat themselves with readily available steroids and antibiotics, so they don’t come into hospital and get recurrent infections. Kids with diabetes learn to monitor their own insulin levels.

Infection control is a big issue. We’re making advances in cleaning skin. Washing hands between patients, sterile gloves and aprons. There’s a lot of hand-washing. We wash hands before and after each person. But constantly hand-washing can make your hands dry and crack – which in turn carries risk of infection – so you need to moisturise hands too. Our hands are the tools of our trade so we have to look after them!

We use colour-coding: aprons are green for food, blue for dressings, yellow if a patient is infected, and white for general use. The mops and buckets are all colour-coded too to use in separate areas of the ward. Simple systems make a difference.

The public have been frightened by the news coverage of increasing numbers of MRSA and Clostridium Difficile in hospital settings. If you were to get on a bus full of everyday folk, a high percentage would have MRSA on their skin. That isn’t a problem as they are fit and well individuals. MRSA has a greater impact on un-well individuals especially those in hospital. Patients can become infected with the organism as a consequence of passing the skin barrier at wound dressing, catheterisation and cannulation and so hand washing and asepsis is vital practise.

Then there’s the bowel infection Clostridium Difficile, which is usually antibiotic induced. If you are frail and you’ve taken certain or multiple courses of antibiotics then you are susceptible to this infection. The antibiotics can destroy the good flora in your gut and the dormant toxin present in your gut can takeover giving you the drug induced colitis and subsequent diarrhoea which is clostridium difficile. This infection could then contribute further to increased frailty and an increased length of stay in hospital.

It’s about being human, coming into hospital. You are faced with your frailties. You’re the new kid at school again. You want someone to show you round, make you welcome. We’re preparing your journey, whatever it is. We have a duty of care and we try to engage family and friends too, for help. It’s not just about us who are the carers or experts in care. The family contribution is vital, as they know the particular person and how they behave when they are well. If they are concerned about something, I seek a medical review. They can’t necessarily say what is troubling them about the state of their relative, but they have a perception and it should be taken seriously, not dismissed because they aren’t professionals. Working together with the family unit is important to achieve the best outcome for the patient.

Complaints shouldn’t be dismissed either. They shouldn’t be seen in a negative light, because they help us to improve our service when we get it wrong. We are all human and capable of getting it wrong sometimes; as the saying goes “By the grace of God there go I”. If we don’t reflect, review and change, then we’ll make the same mistakes over and over again.

Who deals with hospital best? It is hard to say. Some people present well, but they will not share their experiences – they could be anxious or depressed. Men especially try to put on a brave face. You could line up five people with the same illness and they’d all present differently. It’s about how people deal with it, there’s not a right fix for everyone.

Accident and Emergency focus on illness first, but in rehabilitation we need to consider the physical, psychological, spiritual, social aspects. We determine how you were living before your illness, what are achievable goals, what goals are too big. People sometimes get disappointed if they measure themselves against others. But we are all different and can respond differently according to our life conditioning.

The physical and mental are interlocked. Some people believe that faith helps them. But you can also turn that on its head. Others see illness as a punishment from God.

Motivation and following instruction has a lot to do with recovery. I cared for a man who had a stroke, a bad one. By his motivation, his diligence, he recovered more than he ‘should’ have done. And the converse can happen. If a stroke damages part of the brain that affects understanding and you can’t follow instructions, then your recovery isn’t going to be as good. You also have people getting aggressive towards staff because of misunderstandings. If a nurse is doing something to you that you don’t understand, then you defend yourself. And that can get you labelled as difficult, or disturbed… If you have a diagnosis of dementia, people tend to stand back from you. But dementia doesn’t necessarily bring behaviour difficulties.

For staff, is it possible to have compassion, fatigue, burn-out? I’ve had burnout because I care passionately about what I do and understand my responsibility as a registered nurse and ward manager. I often stay after hours if the service requires it for a better patient outcome or to ensure management goals are met. But sometimes it does become expected that you will stay on and sometimes you have to draw a line that you balance your work and home life. Care can fluctuate at the end of shift, so you might stay on if you have the skills others haven’t. I’m the manager of the ward, so I need to have an overview of all the ward issues to lead effectively. I need support and good communication from the ward staff. I ask for feedback on their workload & how the shift was, to enable me to delegate appropriately & protect them from fatigue and risk of injury. I try to be fair & balanced with my decision making but I am mindful that we have to meet the service needs.

You’ve got to get a team that works well together – a 24 hour service. People cannot be left packed up in bed with incontinence pads. A pressure sore only takes a couple of hours to develop. You can’t sit and read or knit – you’re being paid to be a nurse. You are always on the go assessing, anticipating and meeting patients care needs.

If you’re a patient with dementia, you might need the prompt of sitting at a table with others in order to eat. People coming together makes them interact. People with dementia in that situation will perhaps pick up knives and forks when otherwise they might not have done if left to themselves. New wards are designed for bed to chair existence with no dayroom or dining facilities. This is the design for acute care and not rehabilitation. Almost like battery nursing on a conveyor belt- quick in quick out. Time will tell if this new design will change to again encourage patients to interact.

People need to understand their illness – for instance, a stroke is not a quick fix. They need a strategy, things to occupy them, to entertain them. Everyone is individual in this, recovery time is individual. And even their personal coping strategies have to change – using same coping strategy repeatedly doesn’t work. The family can help get people re-engaged into the community. Going out into the grounds in a wheelchair, go for a drive with your family. Achievable goals must be given to motivate recovery. Prognosis & progress should be discussed honestly. You have the right to the information first, if it’s about you.

We all become vulnerable at some time in our lives. This might be for physical, or mental, reasons. Or it might be emotional, a relationship break-up for instance. We hear a lot about ‘vulnerable adults’ and we have changed our practice because of that.

Changes always come, turning what we previously knew on its head. Nursing changes, it spirals, moving on. We should take the good with us, looking always with new eyes.

Interview with Philip Davenport, 2^nd September 2009

Interview with Sister Charlotte Moran. Stroke Ward, Stepping Hill Hospital

Strokes: people can become withdrawn, quiet, can be aggressive, can be tearful. People often say, you hear about strokes, but until it happens…

It’s hard to tell what a stroke will bring. You can have a mini-stroke that 24 hours later has been resolved. Other patients can be here 10 months. In the acute phase, people need to be looked after a lot. Then they move towards rehabilitation. It’s goal setting.

It’s about the denseness of the limbs – not being able to hold up your leg or arm, like a dead weight, with no power. But that can come back working with OTs and physios. Patients often talk to these people a lot, thinking about how they’re going to cope at home. Talking about the little things really. When they go home I always say goodbye. A shake of the hand, a kiss of the cheek. It’s the little things that make people tick.

Advice about strokes is improving: diet, lifestyle, smoking, therapy, advice about driving… The Stroke Association is good and the government have addressed it. Strokes have been a key area, like reducing waiting times. Awareness has improved through the media. So people know that smoking, high blood pressure, stressful job might have contributed to them having a stroke. Others just won’t believe it, whatever you tell them.

Do certain kinds of patients recover more easily from a stroke? Someone who is motivated has a reason to improve – a family, a holiday cruise booked, things to look forward to. Trust – trusting the staff – this really helps. We build a therapeutic relationships and trust is a big help with that. Humour – often people with a good sense of humour do well.

The basic care we do respectfully. A lot of trust is needed. What’s said (between nurse and patient) is in confidence. As a nurse, one of your codes is confidentiality. We are also advocates for people who perhaps can’t voice their own views. Often gestures can be used to communicate. Communication boards, picture boards, a basic YES/NO on picture cards. I’M HUNGRY. I’M IN PAIN. Someone might be able to smile. Communication takes a lot of time, but we’ve got to find a way. And then when it gets to the more complex things such as ‘I’d like some crumpets for my breakfast’, it’s difficult.

A typical stroke patient would be someone who lost movement in an arm, had swallow difficulty and some visual problems – bleeds or blockage can affect vision, creating one-eyed vision, tunnel or slit vision leading to a high risk of falling.

We are building therapeutic relationships, holistic – they’re not a number they’re a person. We orientate them to time and place, say hello at the start of the day and bye at the end. We have ex-patients who come in as volunteers and give out teas and cakes and sit with the patients, having a talk. Letting them know it’ll be OK.

Do I get stressed? You have to look after yourself, be aware of burnout. Space your shifts, take holidays, make sure you’re eating and sleeping properly. We do have time to debrief or reflect, that’s part of nurse training, but it is down to the individual.

I have the ability to switch on or off. During the car journey home I can switch off and become Charlotte, though not always. Sometimes I get upset. But if I cared in a strong way about every patient that died I’d be tearful all the time and couldn’t support anyone. My job is to support the patient and the family and I have to be there for staff as well. The staff know the door’s always open. Patients can be aggressive and upset the staff. I’m there for them, in the thick of it.

The staff work as a team, it’s a collective effort. Everyone needs to know their job and all bring something different. I might be very focussed and procedure-led, whereas someone else will be interested in having a chat about what you had for your tea.

I think you’re born with caring in you. Most of the women in my family went into caring: nursing, social work. I was caring for children from a young age. You don’t run out of caring, even when you’re exhausted and don’t know how you’re going to find the energy to drive home. You get up next day and come back with the same amount of caring. I’d say that’s true of most nurses.

I was born with it, always going to be a nurse. Went into it from Uni. Student Nurse: you get your tunic and your set of keys. But you learn how to actually be a nurse gradually. At first, some days are good, others not. You know if you’re made for this. Can you deal with the smell of a ward?

I listen out the whole time I’m here – it’s like a sixth sense listening to all the bays, making sure everything is alright. I just do it as part of the job. Some days you feel the responsibility. I’m paid to be accountable, my job is to make sure everything is to standard.

Patience: take a breath and count to ten. I do that regularly. Patience is not one of my qualities, I have to work on it. My family say my patience runs out at home – my mum and aunties are the same. But here I’m full of sympathy.

Sister Charlotte Moran, interviewed by Philip Davenport 7th August 2009

marvellous encounters of my life O little drops

This afternoon (Fri 11 Sept) I worked with people in The Meadows, which is among other things a day centre for people with a dementia diagnosis. The two staff (Ann and Anne) and myself had the luxury of working one-to-one with participants.

We'd talked about memory and the loss of memory on other occasions, with my noting the conversations, allowing threads to build into a complex weaving. Today, we began with seeds of Il Pleut (Appollinaire) and Kaddish (Ginsberg) two of the most well-known 20th Century poems - and then span them away into rain and recollection.

The poem was collaged together from people's memories of rain, memories of forgetting, and image-play of rain symbolising the liquid borders of these states. The blurring of edges, of shapes misting, thunderbursts, and the sensual beauty of rain perceived through our bodies.

The group of three participants worked quietly, concentrated. This was a very different quality of attention than that of the first two talk-shops. Today was most definitely a serious enterprise, fully meant. The subject of forgetting is talked about in this place with humour, anger, fear, insight...

Broaching it felt like an extended faux pas, the sound of a taboo breaking. To my ears, the piece that emerged had both delicacy and directness. A three-voice reading of it flicked between joy and pain. Mostly joy. Anne said afterward, dementia is often depicted on TV with doomy images and pompous classical music. But it is not necessarily a dark journey; light does come through.

As I left, I was full of my own memories of The Meadows, which is where Lois and I began our first collaborative sessions nearly ten years ago. I kept expecting to hear the clicking of those Blackburn high heels and her big bursts of laughter.

the unknown

My dad rang this morning, wanting to share his delight in the promptness of his GP and at last getting a diagnosis for the pain he has been suffering. He phoned the surgery at 9.30 and his doctor was round to his house in 5 minutes!

Like so many people he finds it difficult to ask for help, particularly from health professionals. This is the first time I can remember him asking for a home appointment, whether this is out of the 'fear' of doctors, or not wanting to bother them- prehaps a combination of both, I'm not sure...

He's been suffering with lots of persistent pain, and was today diagnosed with 'Sciatica' as he described it 'its what old people get!' He appeared to get huge pleasure and relief from having this 'pain' named, (and with the promise of a referral to a physiotherapist.)

Over the years meeting with older people in health care settings, one of the biggest issues to wellbeing is not knowing- not being able to put a name to a condition. Often it seems a case of trial and error, to find out what the problem isnt, rather than what it is. Then there is the emotional pain of waiting, waiting for test results, waiting for doctors rounds or appointments with specialists. Recently I experinenced a form of this first hand. When pregnant I had the Amniocentesis test for chromosomal abnormalities and fetal infections. The time between my blood tests results, recieving the news that I was in the high risk catagory and the amniocentesis, the time of not knowing, not being able to plan, feeling like I couldnt even bond with the baby growing inside of me- felt never ending and was horrible. Thankfully for me the tests were clear.

It seems that having a name to put to something, you can start to tackle it both mentally and physically.

http://en.wikipedia.org/wiki/Sciatica

"A bookful of things you're left wondering."

Today I ran a morning session, moving chair to chair, bed to bed. Working this way loses the group dynamism, but gains intimacy. Sometimes the people who are quietest in groups are the most open one to one. There are little glimmering insights that lead right to the heart of people's lives.

One such moment occurred today, in a conversation with a lady who is normally very quiet. She is unsure of her own speaking, the use of words sometimes baffles her. But this lack of certainty makes her lucid in a different way. She was talking about old age:

"People expect you to live the same time again and it doesn't give you time to live now. The time it happened, your reflexes were different but now people expect you to have the same feel. Your body reacts differently, you are not capable of dealing with that response...

Your body reacts to time and place. The body is accepting, whereas your mind is elsewhere losing the day-to-day, instead of developing what's within. Your body absorbs feeling, real life itself. "

This was said with great humbleness, a distrust of her own mind, of her own idea of herself.

Half the river and all the way up to the sea

It's a commonplace to say you can be lonely in a crowd, but crowded hospitals incubate some particular strains of loneliness. This morning was spent sitting around the table in Ward 5 at Cherry Tree Hospital, with Nora, Dorothy, Leila, Helen and Hilda, trying to put a finger on what hospital loneliness is.

The very fact that we were gathered around a table was an issue. As Leila said, "To talk, you need a table to sit round." Chatting over cups of tea, taking turns with the conversation, is much easier with a table as meeting place. Unfortunately, many wards - especially some of the modern builds - have tiny day rooms and no large communal spaces. People can spend weeks sitting by their beds, in rows, cut off from close contact with one another.

The uncertainty of ill health is another factor. Not only might you be physically at a low ebb, medicated, and moved from ward to ward - but uncertainty as a continued state erodes confidence. As Dorothy said: "It's the general setup of it all, and then you don't know what you've got to face. Waiting to see what's going to happen. You're not as outgoing if you've got something on your mind, worry. This thing, it's happening to you, no one else but you. So you feel alone. Swimming half the river and all the way up to the sea."

Language is of course another problem. We are beseiged by misunderstanding. Whether we simply don't have the words, or the words have been taken away from us (by a stroke, medication, tiredness, dementia) it is a difficult thing to reach a happy meeting with these sounds we make. Just before I started the session, I spent a little time with a woman whose stroke had taken most of her speech, she spoke instead with smiles and hand pressure, and with her eyes. Leila's first language is not English and so a different set of problems appears. The word for loneliness in Polish is samonsc.

And what to do about loneliness? Helen: "Think of your close people. I would do that, after all they're the ones you really love."

Norma: "I approach people and ask them 'Would you like to talk?' People often say yes, they're pleased to know me. If you don't talk to em they think your too posh for them!"

Dorothy: "Every day is a little different - it can change sometimes for the good."

We discussed the photographs that people have by their beds. Norma again: "Bring a photograph of people you love - then you're near to them. You feel you're with them and they feel the same."

And what would a picture of loneliness be, I wondered?

Dorothy: "Empty!"

Business as unusual

Home is sometimes the littlest thing. Frank Powell has a small calm in the bustle of the ward. On his bedside table is a stack of CDs, a newspaper, a book, a carton of juice.

"Do a crossword, something like that. Or read. I reminisce many times, thinking of the past. Each thought is different."

Everybody deals with the experience of hospital in their own way. And the reasons for being in are as varied as the people.

"They cope with it as differently as themselves. The life in here, you need to ease it. Crosswords, reading, it's like ordinary isn't it? It's a bit annoying the noise here but not as bad as some. Just cope that's all. Pain? Grin and bear it. Good luck with the weather."

Being with Frank, I have a strong sense that he has created his own space, a bubble of concentration and inner life. But he doesn't especially stand out, it's not a big statement, quite the opposite.

"Got my CD. Newspaper, book. I fit in. When in Rome..."

I often wonder: how I would deal with all this? The pain, the strange space and strangers, my own body a stranger too.

"Make it close to your ordinary life. Try to make this unusual thing as close to your usual as possible."

War and peace

"I was five when the war broke. A little nipper. Remember the bombs coming over and the black curtains. Burning candles. And much later, I remember this man coming out of the dancehall. Shouting, 'The war's over!' and dancing in the street."

On Friday morning I sat with Norah, Helen, Dorothy, Freida, Mary and Angela in the rehab ward at Cherry Tree Hospital. I asked them about the big war they'd lived through - the 1939 war - if the struggle of simply getting through it had prepared them for the struggle back to health now?

"You've got to get on with it, or slip behind. It makes you harder. You look after yourself, you're not baby-ish like, crying all the time. You're hard, strong I should say. You don't notice at the time, but it comes later. You think about it, see it in your mind."

Did that experience shape your experience of hospital?

"Yes, it's part of life. It's hard but you've got to get on with it."

Did it prepare you for hospital?

"You're never ready for hospital. Not if you've been healthy before. You're not the same as you were. It's change. Suddenly you find yourself in hospital in terrible pain. Some people get upset, some feel it deeply, some accept it easier. Different temperaments. The ones who accept change, the ones who fight it."

And what would you say to someone in that position.

"It does pass in time, it does. IT DOES PASS."

ever

a stroke: it’s like freezing a piece of meat

waiting and waiting and waiting and waiting
a cancellation
put me back again
a slight stroke
couldn’t move my arm
so I lift it with the other one
don’t let it lie dead
rub the back of your hand
keep it going

and then it’s un-frozen

waiting and
try to keep moving
haul yourself
with a walking stick
to your exercises
tried, tired and knackered
they train you, so
if you fall in the house by yourself
trapped

but only in part and some remains

waiting and
trying to open the door
try to get to the phone
try to climb a step, up four inches
(one bad leg, two arms, nothing 100%)
terrifying thinking about it
don’t think, try to
get on, to stand

on ice.

Anonymous
24-31 July 2009

for further examples of arthur+martha poems please visit http://arthur-and-martha-poems.blogspot.com/

come back come back come back

walking:
a simple question

put it this way
once you’re in these places
they expect you to stay
til you’re better

my own children took to walking straightway

my wife in hospital expecting a child
I walked there four times that day
morning, afternoon, evening
must’ve done 40 miles

now you can’t say I’ve been a lazy person so
far as walking is concerned

put it this way
what changes is you
are seeing four walls day in
out

came here with expectations
put in here, I plunged
to where I am
now

walking:
a simple question, a simple answer
me, wheelchair

lets put it again this way
opportunity is a fine thing

a fine thing is opportunity
a pint and a half of beer a day
my doctor recommended

recommended a little village green
fields, the pub, a walk
dig the allotment
active all my life’s apprenticeship

(walking in the wood at night
by the river
it’d make a noise like:
come back come back come back
sandpipers
on the side
oh god aye
comes to life that does)

come in here and I’m idle, a passed buck

explain that to me straight
a straight punch
tell the doctors
they will be treated in their late life
like this.


Thomas Weston
31 July 2009

for further examples of arthur+martha poems please visit http://arthur-and-martha-poems.blogspot.com/

come back come back come back

I walk, or I ride a bike. For most of my journeys I’m self-propelled by my own limbs. Even when Julia and I travel by car, there’s often a long walk at the end of it, hiking up into the hills. Thomas, who is 88 and has walked his life's duration, now sits all day in a chair by his hospital bed.

I asked him: how can you come to terms with this?

He said he remembered when his wife was expecting their child, he had to walk to the hospital – a journey of several miles. The baby was a late arrival and he made the journey four times – about 40 miles by foot.

I asked him my question again.

He told me about his daughter’s first steps. And then of his own disastrous first memory of walking. His mother was scrubbing the kitchen floor. There was a bucket of boiling water. He recalled the bucket, gesturing the rising steam. He stumbled into it. Remembered the spill, his mother’s shock. Happily he survived to toddle into more mischief.

I pressed him for a more direct answer. How do you deal with not being able to walk?

He said he remembered walking at night by the river in the village where he was born. The river sounded like talking. It seemed to say: come back come back come back.

Terminally ill and suicidal

I've just finished listening to a fascinating program on the radio: 'Inside the Ethics Committee', entitled Terminally Ill and Suicidal

Phil and I have been wanting to create some work on the emotive subject of death, dying and Palliative care with older people, for the PATIENCE project, so it was a timely and very informative program.

In it Joan Bakewell discusses the real-life case of Mary, a terminally-ill woman in her 80s. She has considered her condition and has decided that she wants to die.

If you missed it and want to listen again, or find out more about the subject matter, you can by following this link http://www.bbc.co.uk/programmes/b00lvgwj

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: The Director of Public Health

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.

Case Notes

I've just been listening to a very interesting 'Case Notes' on the radio, if you missed it you can 'listen again' at http://www.bbc.co.uk/

In the program Dr Mark Porter explores how to improve communication between the medical profession and patients.

"There are always times when a diagnosis is bad news or a treatment has failed. Some doctors have an excellent bedside manner and can talk about the worst with compassion, but there are many who don't naturally have that skill."

shut in now

shut in now
to feel free
just want to jump
in


anon
recycled postcard, pen, glue
2009

Made in collaboration with arthur+martha guest artist Anneke Kuipers.

One in five people over 65 are alone for more than 12 hours a day

"Britain’s older people are living in isolation‚ with those over the age of 65 twice as likely as other age groups to spend over 21 hours of the day alone.

The NOP survey of 1‚000 people found that one in five people over 65 spend more than 12 hours of every day on their own. These people are more at risk of depression and ill-health caused by isolation and loneliness.

More than a quarter of people over 65 do not have a best friend‚ which is higher than any other age group. A third of people over 65 see their local supermarket as somewhere to socialise and get out of the house and one in five people eat their meals there rather than at home." http://www.ageconcern.org.uk

more freedom

you have to
hope for a
quick recovery
so you can go home
more freedom when you are
away hospitals are very good
but they have to have a
limit for what patient can do
hospitals are
very good
they do their best


anon
recycled postcard, pen, glue
2009

carers

my wedding
my engagement
my eternity

Harry Wantling
2008




In the future, most people's lives will include at least one episode of caring. In the UK there are Over 1.5 million people aged 60+ providing unpaid care and over 8,000 carers are aged 90+, 4,000 of these very aged carers provide 50 or more hours care each week

Older carers are…

Often in poor health themselves
Usually living with a partner, especially male carers
Sometimes still in paid work Carers Uk http://www.carersuk.org

fix my brain

fix my brain and hope that would fix everything
my brain that will fix everything else
not a plaster big enough
a plaster wouldnt cover my arm
my hand
‘please put everything right for me

Ivy Burton
8th July 2009

A stroke is a brain attach
"A stroke happens when the blood supply to the brain is cut off and brain cells become damaged and die. It has an immediate effect on body functions (like moving arms and legs) and mental processes (like thinking, remembering and understanding language). Sometimes the symptoms last a short time- called a transient ischaemic attack (TIA) or mini stroke. In other cases, the symptoms may last for a longer time."
The Stroke Association.

D.N.A

D.N.A (HAIR)
I was always
picked as an
angel


anon
2008



'Deoxyribonucleic acid (DNA) is a nucleic acid that contains the genetic instructions used in the development and functioning of all known living organisms and some viruses. The main role of DNA molecules is the long-term storage of information. DNA is often compared to a set of blueprints or a recipe, or a code, since it contains the instructions needed to construct other components of cells, such as proteins and RNA molecules. The DNA segments that carry this genetic information are called genes, but other DNA sequences have structural purposes, or are involved in regulating the use of this genetic information.' Wikipedia

learning to slow down

learning to slow
down
a hard lesson

Rennie Venus
2008

Stroke Ward

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 our conversation 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 and an honor and a privilege to talk with them.

arthritis

my arthritis
I get my realistic details
at all times.


Ron Miles (Curzon)
1st July 2009

Stroke

Try to get up from your wheelchair- its awful- you can't. Sometimes you cry out with (clenches fist)

You do, I can't explain how depressing it is. You have to ask someone if you can go to the toilet, sometimes gone bursting and there's no-one else.

anon
1st July 2009

sit in this chair

sit in this chair, from the collection 'Our needs are very small' a series of Ltd edition postcard size photo/poems from our archive. They show the view from older people’s hospital beds, wheelchairs, or their accommodation in residential housing. These photos were taken by the participants themselves, or else directed by them. Their words were selected from conversations with each participant – offering sidelong, poetic views on how it feels to be in a care environment.

Had a fall last night

Had a fall last night, from the collection 'Our needs are very small' a series of Ltd edition postcard size photo/poems from our archive. They show the view from older people’s hospital beds, or their accommodation in residential housing. These photos were taken by the participants themselves, or else directed by them. Their words were selected from conversations with each participant – offering sidelong, poetic views on how it feels to be in a care environment.


Slips, trips and falls are a very common cause of accidents with hundreds of thousands of incidents reported each year. Falls often result in serious injury, often to bones and joints, and there are many fatalities, particularly among older people and people at work.
Accidental falls are by far the biggest killer in the home. An estimated 1,000 older people die each year from a fall on stairs. Falls cause the most deaths and long-term health problems among older people. NHS website http://www.nhs.uk

the jargon

Below is the poem we made with the group 'talking heads' at Walthew House. Walthew House http://www.walthewhouse.org.uk is an independent local charity supporting people in Stockport who are blind, visually impaired, Deaf or hard of hearing or who have dual sensory loss. We were made very welcome by the group, I learnt lots and look forward to hearing about the next session with the group (I'll be of on my maternity leave by then!)


the jargon

terminology:
I’m registered blind

the word blind is very final
people
get embarrassed by words
but I’ve always faced the world
blind
eyes of bone

some boys kicked
the stick out of my hand, said
“Now go look for it,” said
unacceptable words, not-PC
always interested me, the words
I am totally blind
a spade’s a spade
an indicator cane
a symbol
a guide cane to
measure from your foot to your breastbone

go through a grieving
lost vision
lost independence
grieving
lightsudden flewbird
go through a long time
the bitter twist fills a void
Blind Beggarman Pew always
bringing the black spot

language, jargon:
visually impaired

how small my disability
from the foot
to the top of the heart-bone
born blind:
went to schools for the blind
the sunshine homes
colours mix with words for me
anger with red traffic lights
what you can see and what I can’t is

I don’t get any older
in the shaving mirror.