PATIENCE (press release)

“There were times when I was reading this book that the hairs on the back of my neck stood on end and I felt my eyes prick with tears.”

(Fiona Roscoe, Advanced Nurse Practitioner)

A new book of experimental art and poetry by older people in hospital will help patients cope with illness and is being promoted as part of nurse training. 

PATIENCE is an account of the emotional rollercoaster of illness. The poems and artworks are by patients who are sometimes in the process of recovery, sometimes coming to terms with dying. The book trials experimental ways of working that haven’t been used in hospital arts, in a bid to get closer to the genuine voice of patients. 

Poet Philip Davenport explained: “We hope PATIENCE will help people deal with the journey through illness. The poems and artworks were made using cutup techniques, blending text and art, which allowed people to make delicate, tangential work that reflected their physical state. There’s a lot of humour and acceptance in the pieces. The idea is that PATIENCE will help people realise they’re not alone in illness, others have been there too.”

“We have put copies of the book on the wards for people to see. But the workshops were a tonic in themselves, the act of making something creative helps patients deal with illness, bringing respite. ”

“The end product is the joy you get from creating it…” (David, patient)

“Writing helps – ever since my stroke it helps me to spell – gets my brain working. Sometimes I get a bit down and I say to myself: come on you silly monkey, get writing. Do something.” (Joyce, patient)

PATIENCE was compiled from workshops and interviews with people in healthcare in the North West of England by arts organisation arthur+martha, in a Lottery-funded project. Threading between the art and poems are interviews with nurses, doctors and carers. The book becomes a cross-section of hospital life, using artworks, photographs (many are snapshots taken by patients of the view from their bed) poems, discussion. There are forewords by poet Carol Watts and psychiatrist Francis Creed; renowned American poet Robert Grenier wrote the ‘afterwards’.  

"The crossover between image and word is what makes this book unique - someone's shaky handwriting, or their face, or an object they've labelled - they are the fingerprints of real life. These little indications of frailty are very moving, " commented Artist Lois Blackburn from arthur+martha. “We encountered amazing determination, humour and kindness in hospital amongst patients and staff. People dealing with dementia, depression, diabetes, strokes... We met the experts in treating these illnesses and the sufferers, who in their own way are also experts. Their insights are important to pass on; they teach us how to live in our bodies gracefully as we age.” 

As well as being a tool for the wards, the book is being promoted as an adjunct for nurse training, giving student nurses a unique opportunity to understand and empathise with the point-of-view of older patients. The book is also available to the general public as an artful object in itself - a moment of peace in the midst of panic, a meditation on a rollercoaster. 

PATIENCE 129pp hardback, full colour ISBN 978-0-9539367-8-6 retails at £24.99 and is currently available from Amazon at: 

http://www.amazon.co.uk/

Strength of Steel

Saturday, we held the launch of Patience at Stepping Hill Hospital. Coinciding with the Stepping Hill Open Day, we had a great mix of staff, patients and the general public view our book. 

I took advantage of being next to the cake stall, and my whole family benefited from the fantastic chocolate roulade.  What I found most inspiring was the tireless work of the volunteers, what a fantastic bunch.

We got some more wonderful feedback to the Patience book. A retired teacher visiting the hospital, was excited by the book one particular artwork caught her attention,  Lost my Independence:

"The Spiral, the strength of steel, your mind is unwinding- like steel, gradually unwinding, from one side to another,  thats how I see it- that would express everything to me." Sylvia Piggott. 

the minds of elderly patients

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

Who are we to know what is going on in the minds of elderly patients as they sit dutifully in their chairs waiting for the next ward round or cup of tea?

It is a time when many are at their most vulnerable and reflective but sometimes due to disability and ill health are unable to express themselves. The artists of arthur+martha have patiently sat with these souls and helped them to unlock their thoughts. In doing so, not only do we have examples of unique creative art but also a new dimension in our appreciation of our most senior citizens. (referring to Stages of grief 1950 and Parachute Landing by Albert Burrows)

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

Book Launch at Stepping Hill Hospital

We are pleased to announce that we will be launching our book PATIENCE, at Stepping Hill Hospital during their Open Day, Saturday 25th September,  between 12 pm. and 4.00 pm. During the afternoon, we will be based at E1, the Stroke Unit. You can find out more about the open day by visiting http://www.stockporthealth.nwest.nhs.uk/

schools of nursing

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

The stark honesty and desperation expressed by a stroke patient in 'Ever' provides a frightening insight into her world. I would advocate that schools of nursing examine their curriculums and ensure that students are given an opportunity to experience the art produced from this project as stopping to listen to what patients are telling us is key to knowing what needs to be done to help them.

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

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

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.

peoples art

In response to our new book Patience, Advance Nurse Practitioner, Fiona Roscoe has written:

Thumbing through the pages of this beautifully edited book your eyes are drawn to the different fonts and styles of expression on every page. What could have been unimaginative streams of text with predictably placed pictures is instead an attractive collection of 'people's art' that would grace any coffee table or bookshelf!

Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

You can download a sample chapter of Patience at http://www.arthur-and-martha.co.uk It will soon be available for sale at Amazon.

bear-baiting for the queen

the roaring of lions:
p ain
cuts my leg off
cuts the eleph ant’s trunk off
fullstop hyphen exclamation

the howling:
when you hear aaaaaaaaa
pain's hot horseshoe
spit on it just before the strike
it explodes raging

the raging sea:
look out at the
storm
there’s miles
between us

portions of eternity cry
you cry mainly
my wife going, going
(p ain de al with it your own way)
me in tears too great for the eye.

Anonymous

Parkinson’s Disease

Medical Director, Doctor Catania interviewed at Stepping Hill Hospital, Stockport, 2009

by Philip Davenport

For Parkinson’s Disease, the myth is the extreme. If you flash the word ‘Parkinson’s’ people conjure up pejorative words associated with extreme cases. This doesn’t describe the long journey of a patient. It is a progressive disease, but there are different rates of progression – almost individual. We have effective symptomatic treatment for patients.

30 years ago Parkinson’s was untreatable. Its progression remains untreatable, but the difference is that now the symptoms can be treated effectively. Combinations of treatment can be tailored. Older people frequently have other morbid conditions, so Parkinson’s is not necessarily the only contributor to illhealth.

Nowadays there’s a vast interest in Parkinson’s Disease among medics and the pharmaceutical industry, because the population is ageing and Parkinson’s is related to age. They know there’ll be a sustained demand for treatment. Very likely in the future, there will be novel therapies improving symptoms, but also influencing the rate of the disease’s progression – at the moment we can’t influence progression. There’ll be a lot of effort to diagnose it before symptoms develop – at the moment there’s a 10-year period of Parkinson’s that’s pre-clinical, invisible to us. Spotting and influencing the disease earlier will affect the rate of progression.

A large proportion of sufferers experience abnormalities with their sense of smell, which is possibly an indicator. Also constipation, depression and abnormal sleep. At the moment you can’t accurately diagnose pre- Parkinson’s.

Patients inevitably experience an element of mourning. There’s a wide spectrum of patients. Some self-diagnose. Some are relieved to be told about the nature of the illness and that there’s effective treatment available. Others are taken aback and shocked. Others never come to terms with it. There’s a high incidence of depression with Parkinson’s Disease. Sufferers will need help with this depression and it affects their perception of the illness. In some cases it’s more effective to treat the depression than the Parkinson’s.

Who copes? A personality type associated with Parkinson’s Disease would be highly intelligent and driven. These people tend to be positive. They can be amazing – they’re clearly encountering a high degree of disability but can cope and will say life is tolerable. Other patients, from an objective point of view, seem never to be happy, always want to change their treatment. People with good family support, social networks, positive, who are loved and cared for – this helps with the illness.

The quality of their emotional life – particularly how they deal with the depression – is dependent on how they adapt. Some adapt well, rather than pursuing hobbies that are impeded, they pick up other activities. Coping is affected by how people perceive their own body to be – visual things like the tremor will affect wanting to go out. Eating, for example, or limitations with walking, can produce a social narrowing. But this is highly variable.

Normally after 10 years, people are likely to develop Parkinson’s Disease dementia, which is similar to Lewy Body Disease dementia. Usually there will be visual hallucinations, or tactile or auditory hallucinations. There might be daytime somnolence and acting out dreams. It is an executive dementia, which means that people preserve their short-term memory, but have difficulty in formulating a sequence of ideas. For example, if asked to follow a sequence of alternating numbers or letter, a person with Parkinson’s Disease would not be able to do it.

If you talk to someone with Parkinson’s Disease, they might give the impression that you are not understood. They might also stare at the TV, baffled by the complexity. It is all to do with this inability to deal with sequences. For instance, if you ask them to tap out a simple rhythm with one finger they might be able to do it, but tapping out the same rhythm with two alternating fingers would defeat them. To use a metaphor, it’s a bit like trying to play a piano using rhythm but no scales, no melody.

Giving the news to somebody that they’ve got Parkinson’s is something I’ve done hundreds of times and yet each is unique. When I meet a patient who I’ve diagnosed with the disease I first of all describe what I found in the examination; I tell them that in my opinion this suggests that they have got Parkinson’s Disease. Then I ask: “Have you heard of it?” Next I tell them that this is not curable, but we have very effective symptomatic treatment. It is progressive, but difficult to predict and varies individually. We have a lot of knowledge of it so we can give the best treatment available. I’ll tell them about DVLA, then give them a pack of information to read about the disease.

Sometimes the response is “OK, what do we do now?” and so we discuss treatment. Others need to digest the information. I bring them back in when they’ve had time to reflect and possibly to get more informed.

Their journey, their voyage, as sufferers can be described as passing through mild, moderate, severe stage. It affects the deepest trends in personality. The ‘weather’ changes, depending on the stage and so does treatment. At the mild stage you are interested in having some long-term effects with treatment, maintaining complex brain activity. By the severe palliative stage, you are trying to reduce complexity because the treatment is effective only if the brain has cells to use as transmitters. At this last stage, the dopamine won’t have enough cells to work with and at the very end will only cause hallucinations, increasing distress. The journey takes 15-20 years.

Patients are humans with a particular need. They’ve presented to me a physical problem that impacts on their quality of life. They see me as a person who has experience and knowledge to help. As a doctor, my duty is to help people – I cannot shy from my responsibility. This work is intellectually and medically challenging and also very emotionally fulfilling. The rewards are in helping the carers and relatives understand the nature of the problem, making them feel that they’re not on their own. Even though the patient has an incurable, degenerative condition we can still offer high quality care.

Medical Director - James Catania

James Catania has been a Medical Director for the last six years and is a specialist in the care of older people, for which he has retained his clinical commitments. He has worked as a consultant physician for the last 15 years and has been involved in management for over 13 years

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

Switching your thoughts

Whilst drawing with a patient last week, I asked for her response to the terms:

Anger

What’s the use of being miserable? Am I being frivolous? Just plod on and take what comes… get a bit uptight but not angry. If you get a bit uptight, it affects other people, you get snappy with them.

Bargaining

Switching your thoughts to suit other people, to get what you want.

Depression

I don’t get depressed, I get cross. Its hindering me and my nerves do this when things tidderling me. I get fed up but I’m not depressive. When you get fed up you get cross, when you get depressed you get miserable. All that’s making me cross is being stuck in here. Can’t be doing nothing.


Anon
March 2010

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

Stepping Hill Hospital at Night (after Vosnesensky)

coughing at night

other breathing at night

people tend

droning to sleep

quietly

nurses’

footsteps

low light faces

the television

an adventure

of dark blue glass

constant

quiet breath engine

in their beds

three or four

calmed

safe



people

moving that’s the thing

I want to hear

people

X-ray photos of the soul

lonely

speak to me with dark tongues

lone

night

yawning




Ralph Starmer and Keith Philips

Stepping Hill

o lovely walls

seven months sorrow
been seven months
(o lovely walls!) its been hectic
times seven
nurses change the speed

lively nurseschange beds, lives
coming to you bones groan
brain on top spine down the back

I don’t have time for please
change the speed of the day

doing you good
change your window speed
good-doers do-gooders
throw your body puking
sorrow eat my body

the nurses change

anonymous
Stepping Hill Hospital
2008

patient quotes

We're putting the finishing touches to our end of year report at the moment, here are some examples of quotes from the hospitals used in the report....

“If someone like you gives a bit of hello, it gets the day going on nicer… One thing leads to another with people, they’ve all a little tale to tell. They’re lonely. Time that’s the stumble-block. Do a bit of chit-chat in between and it brings things on a little.” Grace Smith

“People are substantially the same and culture is our local expression.” Louis Marks

“A book of hospital poetry (describing patients’ experiences)? I think the product would be of immense use to patients and doctors… to focus on something of this kind where arts and health are breaking out into new ground is fantastic.” (Dr Steve Watkins)

“Nice pictures, poems, stories from others - Yes! Useful for people who are just coming into hospital… What to expect if there’s a downfall and how to accept it before the up-fall comes.” (Doreen Jones)

“Poems and all – they help people. Sharing personal experience of people helps others.” (Marjorie Rayner)

“This is a miracle.” (Joyce Mack)

conch

many a time tea

on blackpool beach

day trips with me dad all the time

when he had time

blowing her nose

an excuse me lost at sea

in winter gardens - indoor gardens

that’s yours my love that music

fox trot waltz

a winter garden

fresh warm

stay the day

conch

it’s just the blood in your head

you can hear it rush

to shut

it’s rough

cough it up

an excuse me

scared the life out of me change the scene

sea rough

a garden a-flower

a tower

a walk many a time

asleep

me

shells

May Cocker, Rosamund Blackham and Mary Arrandale

Stepping Hill Hospital

my eyes they view the afternoon (part 2)

The living day

my eyes they view the afternoon

but when I sleep the floor

try to get up my way

the image shouts

where am I going?

I woke through heavy sleep

in hospital my rest defeat

shadow’s form to ask

everything against your nature

Lynn Holt 1^st July 2009

Guest writer

It was definitely the beginning of this cold spell, when I went to do my first poetry workshops at Stepping Hill Hospital on 6th November. I was nervous, especially as I was going along to the stroke unit E1 where a long time friend of mine was a patient and would now be a participating in this morning’s workshop.  I was also confused to find that B5 was no longer, and so I rearranged my afternoon session for the old faithful A10.

The morning session on E1 was in a group with people who had recently had a stroke. Each of them had been affected differently. Joyce had lost her speech and was working on gaining it back, Tom had lost the use of his left hand and was slowly trying to adapt to using his other, Victor could no longer write and Muriel was in a similar position.

I felt so much compassion for all of them taking on board the activity of the morning, which was to write how they were feeling using William Carlos William’s poem Asphodel as loose inspiration.
I considered what a difficult task this is to do, when the entire group had been to places recently within their own bodies they would never have imagined.  I was greeted with warmth, tears, sharing, deep thoughts and exasperation.  But not once was any frustration aimed inappropriately, the heightened emotions allowed creativity to happen and vice versa.
William Carlos Williams was chosen as an established poet who suffered a series of strokes, he spoke of his weakened physical state giving him strengthened creative ones. His poem gave way for much discussion and interpretation in the morning session and carried on to A10.

The afternoon session was spent one to one with two patients, who openly admitted liked to talk.  We went from the past to the present, through people in their lives and the daily minute. There are so many levels of creativity I see when finding people to engage in these sort of sessions, from church, to dancing, to making clothes, to bird watching, we are each as unique as our own passion placement, but underlying these writings show we all have the same essential qualities.
All in all an awe inspiring day.

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 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