Patients reading PATIENCE

Today was our first day on the wards with the new book PATIENCE, a deep baptism. Reading these poems in the place where they first came into being, often in circumstances of great suffering, was very moving - the response from patients was powerful and generally positive, though sometimes they too were a little overwhelmed. It was as if we were finally talking about the 'elephant in the room' - everyone's relieved, but it's an awkward moment.

"It brings a new outlook from my point of view, reading this book. It makes you think of something else in life, apart from yourself. You cheer one another up." (Madeleine)

"It's terrible in here, impossible to describe. You have to live it to understand. It can help a little to hear other's experiences. A little. Please come back again and read more poems." (Douglas)

"Very good that, very true. Pass it on... It's openness. You bring things out in people, so people don't close to you... a book like this is useful to read, helps with the patience, you need a lot of patience in here." Jean

We also shared the book with staff, many of whom remembered particular people featured in the collection. As so often happens, they said that they wished they still had time to talk to the patients as we are able to do.

"The emotional side gets overlooked. Without that, you are not treating people in depth. If a patient is in the process of getting better and they have psychological or emotional problems, they won't get better as easily. To verbalise and express their problems, they feel lighter, better... If it's repressed it affects them.


Conversing with them helps. They are away from their environment, in fear. Time is a factor. Take a minute or two, take time to listen and reassure them. Reading them this book will give them an idea of what a patient can expect to go through."

(Staff Nurse Mioji Baloguh)

On E1 the Stroke ward, we read poems to patients Madge and Marjorie, they commented:

"You feel very shaky and that, not kind of with it, you can't vision yourself. This book, it gives other people something of what you feel like."


A daughter, visiting her mother who'd had a stroke two weeks ago, said:

"The book would be nice for when they start recovering and can start reading - if they can't put their feelings into their own words, they could use the book to help." (Amanda)

We hope that PATIENCE will be helpful on the wards, a conversation opener, a comforter and perhaps a communication aid as Amanda describes. There's a point when a book, having been published, starts make its own way, separate from the the makers. As we put PATIENCE out into the world, it is now starting to do just that, to have its identity inscribed by its readers.

Reading PATIENCE - by Scott Thurston

The first copies of PATIENCE, our collection of art and poetry by older people in hospital, are about to be delivered to us. It's a book that's taken much labour and considerable love, so we are in a state of anticipation. Various poets, artists, medical practitioners and (most importantly) patients have very kindly made responses to the book and we will post these on the blog over the next weeks. Scott Thurston at Salford University wrote an overview piece, taking up themes and questions raised in PATIENCE. We felt that Scott's sensitive and insightful essay would be a good way into the debate...PATIENCE

‘take pills like new ideas’
(acceptance, chpt 5)

This latest offering from arthur + martha is a collection of poetry, text and artworks based on older people’s experiences of ill-health and hospitalisation. Divided into five parts, its structure is based on the five stages of the ‘cycle of grief’: denial, anger, bargaining, depression and acceptance. What is remarkable about a+m’s approach is that they use a whole host of techniques associated with innovative and experimental writing in order to frame people’s experiences. The results are simply extraordinary. In these works, the notion of writing and creativity as ‘therapeutic’ does not do justice to the seriousness and the ambition of the project, which is experimental in the truest sense. The diversity of the approach is key. In one strand of the project, creative work emerges from the charged objects of the everyday: medicine boxes getting a makeover by acquiring new labels like ‘take one glass of sunshine a day with water’ or ‘all’s well that ends well’ – the latter on medication for trapped wind relief! In another strand, it is postcards – pictures of famous buildings cut out and stuck on the reverse, creating a new space for words – in another (‘Lost and Found’), text is appended to actual objects – poignantly the label ‘Lost – your husband or your wife’ is attached to a tiny, empty chair.

Aside from these text-objects, there are many poems in the book – some co-authored and often produced using collage and/or cut-up techniques. Ron Miles’ ‘The Old Grenadiers’ is a particularly effective poem which opens:
'you’re 96 years
thy image
an old Grenadier'
(anger, chpt 2)

A stoic meditation on ageing, Miles’ narrator has ‘pain’s / red medal round my neck’ but is still able to conclude: ‘though new-fangled ill / this old dog’s prouder still.’ Elsewhere, Allan Whittaker and Frank Wigley offer a collaborative work, juxtaposing accounts of football history with a patient’s current predicament in a poem called ‘Football’ which is shaped like one on the page. Thus the story of the Busby Babes and their fate in the 1958 Munich air crash leads to some striking reflections:
'you’ve got to be determined to stay alive otherwise this world will see you off falling
into chaos somebody needs to mop the world nurse sort the ends out I’m sat in a
chair thinking literature I cant express god’s fire in the head'
(bargaining, chpt 3)

What is most impressive here is how the innovative techniques employed lead to a genuine creative opportunity. These poems show that an approach to creativity that recognises and utilises language’s physicality and malleability, immediately makes a connection between body and art object. By bringing creative practice closer to embodied experience, and breaking habits – of thought, of feeling, of experiencing – along the way, it is clear that these authors find new ways to express complex physical states that might be hard, or impossible, to achieve by other means. Illustrative of this, a group poem entitled ‘Now My Genius is Gone’ mourns the loss of creative autonomy but simultaneously finds the means for its recovery:
now my genius is some worthless song
I use a lever a little
and it comes back.'
(bargaining, chpt 4)

The personal empowerment resulting from this approach is testified to over and over again in these pages. Another group poem, entitled ‘A Kingdom’ argues ‘a body case / can’t case your mind’ and identifies the meaning behind the central pun of the title:
'when you’re in pain
teaches you something
teaches patience'
(acceptance, chpt 5)

Raymond West, the author of two excellent poems in the book, also comes out fighting in ‘Overcome’:

'have a bout with life
live to the full
with
an incurable disease'
(acceptance, chpt 5)

There is much more to admire in this beautifully-produced book: terrific photographs of the authors – including an impressive double portrait of Violet Gamble – and a series of text-images entitled ‘our needs are very small’ which link writing with images of wards. There are also several highly informative interview-articles from the perspective of various practitioners – care assistants, nursing sisters, a diabetic nurse, medical directors – offering insightful reflections on their experiences alongside more detailed accounts of working with dementia, Alzheimer’s and Parkinson’s.

A key message emerges in this book about trust – not only the trust to be won by care practitioners and creative workers such as arthur + martha, and to which end their creative strategies are invaluable – but also the trust to be granted to those older people in care contexts. As Stephen Watkins argues, the expectation of dependency that many of us have is one to be resisted, otherwise care can too often slide into control. As Watkins puts it:
'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.'
(bargaining, chpt 3)

It is clear from the breadth and verve of the work of this book, that a trust in risk-taking has been fully embraced by everyone involved – in this way fulfilling the experimental essence of creativity.

Dr Scott Thurston

Scott Thurston lectures at the University of Salford where he runs a Masters in Innovative and Experimental Creative Writing. He co-runs The Other Room reading series in Manchester, edits The Radiator, a little magazine of poetics, and co-edits The Journal of British and Irish Innovative Poetry with Robert Sheppard. He has published three collections with Shearsman.

be patient

many patients
aren’t patient
if there’s waiting to be done
take your turn at

patience
nurses can’t give
everyone time
undivided

the vale of years turns
take turns to be patient, wiser
the main answer
what wound healed but by

patience visits
sits quiet with my own thoughts
I call myself
a quiet person

was a dressmaker
if a stitch went wrong
I set it right
in two words, two small words

Margaret Hargreaves

October 2009

Life events (and difficulties)

Recently I had a wonderful opportunity to interview Alison Creed. Alison has a background in medicine and the arts and unique personal insider experience of the following health conditions:

Cancer, osteoarthritis and hip replacements

I don’t define myself by that one episode of illness. I’m aware meeting people who were being treated that they could see this was going to dominate their future, beyond their recovery. I have just reached over 5 years since my recovery, which is supposed to be some sort of milestone. With different cancers you get into different statistics about chances of survival.

I am aware things can happen just out of the blue. At the age of 21 I was in a car with my parents going to see my brother. We were in a very bad car accident, from which my parents ultimately both died. So I’m aware, things happen, that’s my attitude. And cancer is just one thing that can happen. You have to deal with things as they come along. Life goes on.

I think some people have a lot of luck and some a lot of misfortune. This feeds into life - how people approach things. I think there are people who are born optimists; I believe in nature not just nurture, but I don’t think it’s a static thing.

There have been debates recently around positive thinking.

Going for treatment for cancer, I was really sick, nauseated and sick. I know if I had a recurrence, I would want to be able to say no, I don’t want to go on with treatment. It’s important for people to talk about death and dying. The modern concept of a good death is like the ‘think positive’, like you can control everything - but you can’t. Things happen out of the blue.

Cancer wasn’t spoken about at all; it’s changed; it’s much easier to talk about it now.

I’ve had my two more recent episodes of what people may call ill health - episodes with osteoarthritis which led to hip replacements. This is speculation, but do people focus so much on cancer as it happens throughout adulthood? whereas people have a concept of age appropriate ill health...(like arthritis) Now you can hope that a hip replacement may last you up to 20 years or more.

The genetics of it: my grandmother died when I was three of breast cancer, and my sister had it when she was 38. There are different sorts, we have no idea what sort my grandmother had, and my sister and mine were different, but the geneticist suggests that our daughters from their mid 30s onwards, do have mammograms regularly.

When you have been in medicine, you can think of umpteen things that are worse.

Cancer, I was told it takes a year out of your life for the cancer and the treatment thereof, I would say that’s absolutely accurate. People’s approach to things differs; with radiotherapy, some see it as causing them lots of difficulties. For me it was a doddle – it’s just how your body reacts to things.

I would say I didn’t have any pain, the only thing was being sick. The thing that people fear, which causes the dread about it, is the fear of pain. In particular the bone secondaries create a tremendous lot of pain. People fear not being able to cope with it and unfortunately have seen relatives go through this and not have their pain controlled adequately. For some people it’s their own pain of losing their relatives, or seeing them in distress, that’s projected onto the patient. With the hospice movement, people ought not to be in pain. It can be controlled, unfortunately there aren’t enough people skilled enough in pain control, so it’s a legitimate fear. Certain cancers tend to have certain types of secondaries, early diagnosis is very important. Certain cancers, such as melanomas though, pretty much as soon as they are spotted, they have invaded.

The whole language is loaded. Its interesting in obituaries they talk of battles, sometimes I think its not what the patient might have felt, sometimes it’s the relatives’ battle with their own pain, what they’ve seen of suffering or preparing for loss.

(Lois: “I understand that for a lot of women, the loss of a breast, can be worse than the cancer itself”)

The alteration of body image, a physical removal of parts of your body, or with Chemo, the loss of hair. For myself I wondered how I would approach it, I had extremely long hair, it was part of my body image - so I prepared myself by having it cut short. It was a practical thing too, as to have great long strands of it falling out is highly inconvenient. As for the mastectomy business, I have never gone along with this increasing single focus on the breast in western society as sexual rather than also functional, as mammary organs. As it was, I didn’t have to have a mastectomy, I had a surgeon who was very concerned about the aesthetics thereof, but to me it didn’t matter at all. There is the aspect of your partner’s approach to it, you can’t divorce that from it. I didn’t find the hair loss difficult, and the short hairstyle I’ve kept afterwards, people said it took 10 years off me!

There are a whole lot of support networks if you wish to access them, I have never used them due to my own attitude to ill health, I don’t see it as a dominant thing in my life.

It’s much easier to have the cancer yourself, than to see someone else with it.

It’s interesting the part faith might play in peoples approach to it, I regard myself as an atheist. When I was being treated for cancer, people in the village would say, ‘I’ll pray for you’ and that’s a nice expression from some people, its giving a sort of gift in their terms.

With cancer, you see people alter in front of your eyes, weight loss and so on.

I had a useful tip from another patient, pins and needles in your feet - a side effect that you might keep after recovery. I have numbness in my toes, but how important is that? There are practical tips, but I know from the caring profession, you don’t tell everything as then people will feel it, whereas before perhaps they wouldn’t - a placebo effect, but the other way round.

I was very lucky being treated at Christies- who have the expertise. I had an oncologist, who was a fantastic researcher, but who had zero bedside manner. In terms of support there were two breast cancer nurses and they were fantastic. But I’m not backward in accessing what’s there, and would go out and look for it.

I was a classic case of being picked up by routine mammogram. When I got the letter for a recall - I knew and found it straight away.

Interview between Lois Blackburn and Alison Creed Feb 2010

grit

you first come in you’re sick and that slows you can’t be mithered grit me teeth and bear it grit me teeth and keep me head down

called up 1939 went to France Dunkirk had a bad time a bad time

driven to distraction by all the waste of time getting angry doesn’t help you got to somehow slip into a lower gear get through these long days

in a truck for cover

get up when the nurses start clattering early habit of a lifetime bed late after the noise of the medicine the nurses overworking I’m surprised how cheerful they keep

tried to get in the little boat trousers round my neck and the trousers floated away

if you’ve got a decent book get what exercise you can push this wheelchair up and down

people fighting to get on the boat

that’s one thing I never do – give in

and keep a smile on the faces of the nurses

you’ve got to make your pleasure – is there anything that pleases me? - yes everything - grit me teeth and grin

E Wooley
2008

stages of grief: 1950

it’s the same a broken heart and physical pain

he died in front of me (talking one minute)
the pain in their face
you feel it
want to do
something and you can’t
the doctors said no

went cold head to toes
and you can’t get warm
when you’ve had a lovely husband
you feel it more

helping people helps
fills a gap fills what’s gone
sorry I never meant
to

break

you can let yourself go
and then you fade
sitting on ice days
not sleeping he died (talking one minute)
fade or you fight it
its always there
1950 as though it was last week as though

you cry alone
there all the time
even when I’m washing
up

a broken heart and physical pain though
everything shut
I put a bolt on the door
said: ‘There is no
good’ and then I was praying
it pulls it pulls
come back at night

come or you just
let your
self
go.

Anonymous
Cherry Tree
2009

happiness is a cheeky so-and-so

Phil has been busy editing poems for Patience, and just sent me a batch. Here is the first one, a bit of joy....

happiness is a cheeky so-and-so

happiness waking up in the morning
happiness happiness
find happiness in grandkids gladness
they keep you young and one on the way singing

happiness crowds queues laughing
happiness happiness
in your chest happiness overalls
I’ll assist you wrap it all in healing bringing

happiness the glugging sound of
happiness happiness
would you like a cup of
happiness? – the dog just smiled at me

(are we going up the dancers?)

May, Audrey, Edna, Marion
2009

my mind is a kindom

I've been experimenting recently working with the 'Patience' poems, and creating my own text/art pieces, sort of in the tradition of a concrete poem. Its been a bit of my own therapy whilst on maternity leave. Somehow doing something creative counteracts the sleep deprivation and leaves me feeling quite invigorated and almost human again.you can find more of my illustrations at www.loisblackburn.co.uk/

migraine

fortnight this time
few times before
me head
very bad heads
suffered from migraines all my life
when the change came
I’m left with

take them as part of life
only you can do it
nobody else can help
take my mind of it
find something to take my mind
plenty of people worse of than me
would swap places
life’s ups and down
money doesn’t come into it
live your life to the full
say to myself people have the same problems
they get over it
have to do the same

pain I know its there
try and shut it away as much as I can
plenty worse
migraines for years
say to myself there’s another one
will go eventually

bad bump when I was a little girl
set them off
got to master it
up to you how you deal with it
walk around with a morbid face
that doesn’t help
people go around like it’s the
end of the world
that doesn’t help

when its coming on think
oh not again
nearly all my head
starts at the front goes around the back
severe pain
go on with it
not a lot you can do until it goes
dull headache
an hour
sometimes one eye goes
know one is coming
just deteriorates
then its gone
the Lord did hear me
let me have a good nights sleep

get mythered about things
get one
have to stop mythering
not to worry

pray to the Lord at night
please free me of this pain
more or less help me
grin and bare it till it went
really feel ill
no way out of it
ask Him to take me many times
but He said no you’ll get over it


determined to get there
nobodies going to stop me

Marjorie Rayner
October 2008


Photo Marjorie Rayner © Lois Blackburn 2009

pills by the bucketful

day by day
the red plague
hope the next will be a little bit better
pain
had so long
childhood
a great thing when you can jump out of
the body

prison:
fight against time
it will come nevertheless
can't move like I used to
must be something stopping me
cope
cant do anything else
hope and pray for a cure
heat or cold
or drugs or whatever
tormenting irritation
can apply
pass the parcel of things

headline: mind can conquer body
make the most of what
little we’ve got
know we’re not going to improve
an acre of barren land
go on day by day
best to think about other things
yellow sand
and hope for
pills by the bucketful


5th Dec 2009
Group

my eyes they view the afternoon (part 1)

went down and that was it

going to make my Aunt a cup of tea

a cup of tea and went down to the floor

woke in hospital

*

try to get up

image shouts

*

where am I going?

different than a normal fall

try to get up , couldn’t shout or anything

don’t remember the brain scan

*

I woke through heavy sleep

in hospital my rest defeat

*

cry with aggravation

particularly in the early stages

can’t even get to your own wardrobe

have to ask for everything

shadow’s form to ask

everything against your nature

against your nature

always wanted to do things myself

accepted it more than to begin with

in terrible pain, chronic pain/relief

*

my eyes they view the afternoon

but when I sleep

*

get back to my Aunt

I care for and love

only the two of us

a normal quiet life, the living day.

*

Lynn Holt

1^st July 2009

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

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."