Friday 22 October 2010

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: 

Thursday 7 October 2010

a must to read


Patience

Patience is a book which captures patients’ experiences and stories of staff on the wards in a very creative way. It shows how every patient is different and how everybody has a different view on their stay in hospital and their life in general.

The artists did an amazing job in engaging with people in a variety of ways meeting people’s interests and abilities e.g. by putting prescription messages for happiness on pharmaceutical packages, writing poems, making pictures of people’s views on their hospital stay and by designing personal postcards.

All pages in the book contain touching messages, give great insights and are often humorous too. It is an impressive piece of collaborative art describing something so common as a stay in hospital, which could also be sometimes frightening and frustrating, from a human perspective.

Patience is an excellent book to look through, to read, to talk about and to reflect upon. It is a must to read for everybody wanting to deliver personalised and dignified care.

A big thank you to all people who contributed and shared their experiences and wisdom and to Lois and Phillip for capturing these valuable messages!



Nicole Alkemade
Older People’s Joint Commissioning Manager
NHS Stockport



Tuesday 28 September 2010

poems by dementia sufferer's


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


I don't think I have ever read a poem by a dementia sufferer before. Nobody usually has the time (or sadly patience) to sit and listen to their confusion. Here we are faced with disjointed sentences and isolated words which illustrate poignantly how lost these people must feel.

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

Now my genius is gone

the brain in its
skull-like maze
now my genius has gone
it’s difficult to say
describe everything, list everything

lost everything
(want it back)
can’t remember why I’m here
memory caught in a trap
it stiffens

spaghetti maze
fingers thick
disturbed at all times
keep building roads at the end of a whip
people say they know me

I wonder at it
puzzled, caught in a trap
now my genius is some worthless song
I use a lever a little
and it comes back.

Group Poem

Monday 27 September 2010

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. 

Friday 24 September 2010

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)

Wednesday 22 September 2010

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)



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

Tuesday 21 September 2010

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.

Monday 20 September 2010

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.



Friday 17 September 2010

Patience: coming into


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

Patience' defined as 'the ability to wait or endure without complaint'. The term suggests dignity and stoicism. Qualities that emerge from the participants in this book when their thoughts are expressed. For eg/ 'Coming into hospital for the fifth time.... (Mary Anandale)
 
Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)

Coming into hospital for the fifth time
coming into hospital for the fifth
hate to think of so many times
it’s a desperate thought
I don’t want to think it
get on and forget sadness
get on with it and remember only the
forget
who you’ve been with
where you’ve been you’re not yourself
I’m so glad that they come
I’m so glad that they come
I can’t say how often but they do
it’s action for yourself
to see someone
to see some with the same
perhaps the same difficulties
you are not alone
there are many people like you for better or worse
there are many people who like you
good people there are many
friends of myself friends of I
saw
my place
sat in my chair
saw my place sat in my chair
I can see so much from here
I wish
good
I can see I can hear.


Mary Arrandale


Anona Entwhistle



Thursday 16 September 2010

Images of Patience


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

Beautiful thought provoking images which could easily stand alone as large portraits or pieces of art. They belong on the walls of hospital waiting rooms, nursing home entrance halls, nursing and medical school refectories. Wherever somebody may pause before moving on to carry out their purpose, be this visiting an elderly relative, submitting an assignment or explaining to a patient that he cannot be discharged because he will not be safe on his own at home.
 
Fiona Roscoe RN DN MSc BSc(Hons) is an Advanced Nurse Practitioner (Primary and Urgent Care)


2 photos of Violet Gamble © Lois Blackburn 2009

Wednesday 15 September 2010

The Art of Nursing

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


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. With over 20 years clinical experience I value and embrace those qualities which we consider as a profession to be 'the Art of Nursing'. What this book does however, is give you 'the Art of patients'. Connecting with the meanings of the pictures and words has been profoundly humbling.


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




Thursday 9 September 2010

WARD D3

Poet Steve Waling writes about visiting his mother in hospital. This piece was sent to us by Steve in reponse to PATIENCE, our collection of poetry and artworks by older people in hospital.

a bundle of sticks /// writhes on a bed
it’s hard to believe in God /// are there any crackers
mum you’re in hospital /// oh I forgot
visiting hours /// are between 6 and 8

but now you’re here /// are there any crackers
close the curtains /// is there a party next door
pull the sheet back over her /// oh I forgot
ambulance siren /// like a startled cat

it’s the delivery suite /// what’s all that banging
dissociated as to place /// acute serious infection
but now you’re here /// it’s hard to believe in
nurse wipes down plastic mattress /// when there’s such

I saw rabbits on the lawn /// I’m hungry
they should bite the bullet /// just get on with it
she tries to climb out of a sheet /// a bundle of sticks
close the curtains /// are there any crackers

the eyes don’t connect /// no but there’s chocolate
disoriented as to place /// I’ll have some of that
see God in mother’s face /// like a startled cat
is there a party next door /// oh I forgot

Steve Waling's book Travelator is published by Salt. Steve teaches creative writing, occasionally in prisons, and reads his poems in public at any given opportunity. His poems might be described as gentle experiments in intimacy, sometimes awkward and always without pretension. He writes the blog Brando's Hat.

Wednesday 8 September 2010

denial, anger, bargaining, depression and acceptance

Our co-worker, the poet Rebecca Guest, writes about the shared experience of making PATIENCE.

These lines occur because of company they are nothing without company.  These lines occur because as the tongue rolls a pen captures; conversations that are captured upon the page express the core of what is latent, meant.  The work is cut to bring the intensity of emotion to the forefront with the maximum expression.  These exchanges of experience are a point of contact which moves beyond people as statistics and beds - to value what it means to be human.


PATIENCE searches our existential struggle with those who are currently amid emotions of denial, anger, bargaining, depression and acceptance.

One difference to other poetic explorations of grief is that these people are not alone, the contributors have a scribe, to express their thoughts to.  The second difference is that participants of this project are speaking whilst in the midst of physical and mental life challenges.

The book's rawness and rich content through words, imagery, subtext and understanding is because of the unique relationship and setting these exchanges of experience take place to create PATIENCE.

Rebecca Guest

Rebecca Guest has been a long-standing collaborator with arthur+martha. She helped to set up Kindness our holocaust survivor project and has supported us during many hundreds of hours in hospital workshops. Rebecca led several sessions for PATIENCE, gathering poems and insights for the book. Her editing work on the poems helped to push their aesthetic, to let them stretch out.

Tuesday 7 September 2010

Close-reading PATIENCE - by Matt Dalby

Matt Dalby is one of several contemporary poets we asked to repsond to PATIENCE. Here, Matt traces a path between two pieces: Be Patient by Margaret Hargreaves, the poem that states the theme of the collection, and a self-exploration of Parkinson's Disease by Doreen Jones, Thee Thy Summer.

Margaret Hargreaves’ Be Patient includes the line ‘was a dressmaker’. There is a sense here that Margaret may no longer be who she was, or at least may feel she is no longer who she was. But it is not a sentimental, nostalgic, ‘when I was younger’ reverie. It is a lot more interesting than that. Here are skills and experience, here is something that makes the loss or impairment of capabilities with illness become more real. Here is something that is often hidden.

Anecdote. An elderly Muslim man in Trafford walking slowly around two parks supported on either side by two young women who appear to be his daughters. The sight is only striking because it is so unusual.

But this is to make assumptions. The assumption that ‘was a dressmaker’ refers to Margaret Hargreaves herself. The assumption of impairment through illness. The assumption that the women supporting the elderly man are his daughters. The only assumption for which there is any evidence is the first of these:

‘I call myself
a quiet person

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

But without knowing the author, and without knowing how the poem was put together it is a dangerous assumption to make. And even if it were a simple statement of fact about the author it only provides limited information. Many people could say ‘was a shop assistant’ and it would tell you precisely nothing about them.

Even so, this is a relatively straightforward poem in comparison to a poem like Doreen Jones’ Thee Thy Summer, which is much more fragmented. Thoughts are abandoned partway through, broken into fragments, and revisited later. The kind of fractures recur throughout the collection. Numbers play a large role in the text, as if they are fixed points within a generalized confusion:

’21 x pills a day’

‘fell 4 x times’

‘7 in morning’

Some numbers, especially 21, recur in the poem. So too does 7. The poem itself is arranged in six stanzas of seven lines in pairs across three columns, which might be read as three sonnets. But there is an ambiguity introduced by fragmenting the poem that means the poem need not be read down each column in turn running left to right. It is also possible to read each line across the columns, or the first stanza of each column in turn. Both of these reading give a poem in two halves of 21 lines each.

The first stanza gives a good sense of how the poem is constructed, and contains words and phrases that recur in the rest of the poem:

’21 x pills a day
make sweet thy beauty
parkinson’s you see
started vertigo
dizzy all the while
fell 4 x times = smashed face
started parkinson’s’

’21’, ‘make sweet’, ‘thy beauty’, ‘parkinson’s you see’, ‘started’, ‘vertigo’, and ‘parkinson’s’ all appear again. Even while broken into pieces the poem circles itself, its own areas of concern, giving it a unity and coherence it might initially seem to lack.

This does not seem designed to imitate any particular mental confusion so much as it feels like an act of resistance. Illness is defined more by medication than by symptoms, and both are an inconvenience. And here and there some aspect of a person (the subject of the poem? the author?) keeps slipping out. This is not loss but an ongoing negotiation with life and illness.

From the four sections I have read this idea of an ongoing negotiation with life and illness is a consistent theme throughout the book. For me this allows for a far greater human interaction and identification with the experiences of the authors than some sentimental veneration of their wisdom and remembrance of things past. To acknowledge the frustrations, pain, anger and limitations of age-related illness is surely more healthy than a vague sympathy. It does not make for a comfortable read, and the poetry is not instantly recognizable as the personal reminiscence and anecdote in conventional forms you might expect from a project of this nature. To my mind this is a good thing. It is more interesting and compelling for the reader.

It would be interesting to know whether the experience of creating the book was more satisfying for the participants than just writing a set of conventional personal reminiscences. Certainly one of my initial thoughts in response to being approached to comment on the book was that experimental approaches, being less codified, less familiar, might be more accessible than more conventional poetry. We all have an idea of what conventional poetry should look like, and that it has a number of rules that we do not understand. These preexisting ideas can limit what we feel is possible, and therefore what we ultimately produce. Whatever the truth, the more experimental approach has led to a book you are actually likely to read and return to, rather than pick up out of sympathy and never open again.


Matt Dalby is an experimental poet whose works take shape within multiple approaches and mediums, including sound and visual making. His blog Santiago's Dead Wasp is a key journal of experimental writing and related events in the North West of England, as well as a document of Matt's ongoing project. His extraordinary communal Mutapoem is world-embracing.

Friday 3 September 2010

Reading PATIENCE x 2

Responses to our forthcoming publication PATIENCE, a collection of art and poetry by older people in hospital.

I love the fact that your work nurtures older people and dignifies their experiences within the context of an environment that conspires to be demeaning and perhaps dispiriting. I especially appreciate the contrast of individual voices on found packaging such as medicine boxes - items which could assume disproportionate importance within a hospital or care home. Placing words and testimony on medicine packets, especially words that are so cheeky, wise and poignant, make me laugh, and smile, and cry.

(Penny Anderson, Journalist)


As a piece of work itself I think it has a real simplicity and tenderness that opens something very ordinary and yet profound in the reader. It makes you care, and makes you think for a little longer about these experiences and what they mean, to you and to them and to all of us.

(Amanda Kilroy, Medical Researcher)

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.

Sunday 18 July 2010

geriatric, older, elderly?

There has been this concept that’s grown up over the last few years of advocacy..

I think its awful this age definition we’ve had, that’s happened right through my life… In my early years there was no concept of a teenager.. People are labelled entirely by their age.

We have the word geriatrics’, but older people are stigmatised, so we look for another one: care of the elderly, care of older people? Older? It starts with the Patient, the categorisation, you might as well say the prisoner when you talk about the patient, because for health and safety and legal reasons, as soon as you are admitted, your physical movements are constrained- you can’t go out.

extract from interview with Alison Creed, Retired

Hip replacements

Things are changing, as technology changes. And they can offer far more its not just people with osteoarthritis that have hip replacements, there are replacements of other joints- things are advancing all the time. I thought when I was on the ward that I would be one of the youngest (at 63) but there were people quite a bit younger than me. There is very little coloration between how something appears on an x-ray and the amount of symptoms, so to a certain extent they go on the symptoms. It’s also a question of supply and demand. The government see healthcare in terms of surgery, therefore they set targets that can be measured, so there have been more, its easier to get a hip replacement than it was. In my case, it was if your sleep was being disturbed; you’ve got pain in the night.


extract from interview with Alison Creed. Retired

Friday 16 July 2010

Download Patience

arthur+martha will soon be launching our new hardback book Patience. The art and poems contained in the book detail a wide variety of patients' responses to illness and to being in healthcare. Woven around these impressions are interviews with doctors and nurses.

This book helps ill people realise they’re not alone. What they find difficult may actually be normal. Many ill people have difficulties with tablets, emotions, and disability. It’s the sharing, the I’m not alone that is important. Professor Francis Creed

To download a sample chapter, please visit our website at http://www.arthur-and-martha.co.uk

Thursday 8 July 2010

Masterful inactivity

Professor Francis Creed, Psychiatrist.

Interview about the PATIENCE book- by Lois Blackburn and Philip Davenport

There are two things I’d say about context for this book. You’ve likened the experience of illness to the experience of grief. There’s a well-recognised literature on adjustment to illness which parallels that on grief. Hackett in USA described how people recovering from a heart attack showed denial, anger, guilt, and then acceptance at different stages of their recovery. He was concerned with those people stuck in the early stages of denial, or guilt and anger or non-acceptance.

Much of my work is seeing people who are trying to cope with physical illness but have not reached a reasonable state of acceptance. There’s a lot of grief associated with physical illness and the loss of ability to do this or that. PATIENCE illustrates ways of coping. People joke, or relate their experience to someone else’s, sharing the difficulties of being ill, taking the pills and the straitjacket of drug regimes.

40 years ago Colin Murray Parkes did a study following 50 women who’d been widowed. People who were themselves grieving were shown this material and said that it helped them simply to read about others’ experiences. Sometimes a pure description of what other people go through is really helpful, without analysis. These things don’t really need to be put into a theoretical context to be helpful.

I’ve worked many years as a psychiatrist in a general hospital and patients who have difficulty coping with progressive illness are a major part of my work. Denial can sometimes be very difficult.. When a person has such great difficulty adjusting to illness confrontation is unlikely to be unhelpful but the right environment can facilitate adjustment.

I saw a very difficult case when I was at the beginning of my career, a woman who couldn’t face dying and who was causing enormous difficulties in the hospital ward, she was so upset, shouting at others, refusing her medication and blaming staff for her problem. But moving into a hospice helped her come to terms with the seriousness of her illness. It was socially acceptable to express the upset of facing death there; others faced the same difficulty. In this setting she became much calmer and ceased to shout, although she was still very upset.. This illustrates how the environment is important in helping someone to deal with where they are at, to accept disability or even forthcoming death.

The care assistant who starts your book is a shining example of care, which is probably more common than people think. He describes taking patients out for a walk, but I bet he means he also talks with them. To be able to talk about a problem is immeasurably important in being able to cope. A problem shared is a problem halved. Much of what I do is providing space to talk safely about the unsafe topics.

I guess some of your work does that too. For instance, the Parkinson’s disease poem does it, talking about difficult things to pin down. Touching on humour, or despair in a poem or whatever emotions are around – that’s why some of the poems are very good. I liked the pill box labelled TAKE TWO, the double-meaning is nice. Take two tablets, but also this is take two, a piece of music, a performance re-starting. Humour is a well-recognised way of dealing with illness.

Some people would be surprised and disarmed by their own emotional reactions to illness. Your artist might not understand where the anger in some of the pieces comes from.

Hospitals are focussed on physical illness, but in hospital on an acute ward people don’t tend to explore emotions. Some doctors and nurses aren’t inclined to open that Pandora’s Box, they are afraid it’ll take a lot of time and afraid that they can’t deal with the consequent emotions, someone breaking down in tears. However, if people are able to express what they feel, they tend to be much more satisfied with their care.

The art may be able to help people cope in this way, it’s a secondary addition which could have benefits. I don’t think it ‘fits’ in the usual medical routine but perhaps that’s a good thing. The primary activity in hospital is treating disease, treating the whole person is secondary. It’s because art doesn’t fit into routine hospital tasks that it potentially has enormous benefits. You’re tapping into the emotional part of being ill, as opposed to the physical. In hospital some staff don’t have the time to help people express emotional states; this book will open up other possible avenues of communication for some who are prepared to do that. It’s not art therapy, but it has therapeutic outcomes.

A project I was involved with helped people to cope with cancer. Sharing their concerns with a member of staff meant people could discuss ways of coping with them and this prevented depression. Now, the work you do as artists could help a lot because people’s emotional reactions to illness could be expressed. Why does it help? It might help because they’ve done something positive, gives them purpose in the day and satisfaction at the end of it. Producing something that someone admires. Might help because they’re working with other people to say or do something in a group, which counters isolation. It might be the way you deal with them as a person, with attributes that you can draw on. Inevitably, hospital staff are concerned with a patient’s symptoms and with their problems, but you talk to them about positives. These are all different ingredients that might be helpful.

This book helps people realise they’re not alone. What they find difficult may actually be normal. Others have difficulties with tablets, emotions, with disability. It’s the sharing, the I’m not alone.

Anger is a difficult emotion which may arise in the context of illness, the positive use of anger can help. Channel the anger. Channel the energy that goes with the anger to do or say something more positive. Don’t just say: ‘Why has this happened to me?’ Channel the anger. Let’s do X, or Y! Use your anger.

Getting old is to do with state of mind. Inevitably with older age you have limitations. When you get older attitude is important, the same as when suffering illness or grief. As life goes on your body changes, usually for the worse and you have to accept it. For us it is considered a kind of illness, but in Africa the older you are, the wiser you are seen to be. There are many good sides. The grandchildren like to play with us, to tease us, to spend time with us. Sit in a chair and tell a story. It’s attitude, it’s not related to age, state-of-mind is what we’re talking about. Grandparents have time. Where the parents can’t wait, the grandparents can.

The ability to wait, patience. The opposite of getting worked up because something’s not happening. The business of letting body and mind heal. Don’t do harm is a tenet of medicine. Masterful inactivity. What that means is it is sometimes best for the doctor to do nothing, to just wait and see. Surgeons are meant to be impatient, to get in and ‘cut’. Physicians give pills and await the consequences. It is joked that Psychiatrists are the most patient of all because their treatments work so slowly! Senior physicians do less for patients because they’ve seen it all before and are more prepared to let nature heal. Tablets have side effects, just need to wait not treat. If you wait, something might happen over which you have no control. Just sit and wait and see.

Thursday 3 June 2010

Pain and care

I think, correctly, people will find expressions of pain uncomfortable for the person whose hearing it, so that they don’t… maybe their protecting the audience. It’s a lack of faith, that people can deal with other people’s pain.

(some people will talk about nothing else but their pain/condition..)

That’s what I mean about support groups, letting something absolutely and totally dominate your life. Which allows that thing to define you.

A sense of humour is terribly important. It’s true that people mitigate difficult conversations with humour, and it may not be appropriate if their not in that place. I would say I have a pretty strong sense of humour and that helps.

I do believe in being upfront about whatever’s going on, and you’ve found that then promotes others to talk themselves. Maybe its having been in the caring profession, it’s no good hiding things. By bringing something out it makes things easier to cope with- that’s the function of art isn’t it?

(some peoples personality, you warm to and want to care.. I was thinking about Mary Hartin, she could hardly communicate with words, and yet you just wanted to be with her)

She was a very open person a very giving person.

(I imagine as a carer it would be very easy to care for her)

definitely

(in our sessions, she was life and soul, even though she had so few words, her body, her eyes her face communicated so much.)

Primo Levi had this concept, of hope, that he believed people survived the concentration camps because they maintained a sense of hope.

People have felt about the American positive thinking, about how you deal with cancer- leads you to either feeling if your not surviving as it where, then you are somehow guilty because you haven’t led a decent life, or you’re not thinking in the right way.

(putting the blame on the person, rather than the condition)

That somehow you can find this magic formula in life, and going to live forever…It puts a blind fold across you, shutters up. Being tested is interesting, living is interesting- so will dying be I imagine.


Alison Creed in conversation


Monday 17 May 2010

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

spy my shadow in the sun

strange weather
’s something you get used to
I’m not proof to it yet
tired
of
it

strange rather
gathering myself to
gether I can’t
give advice and I’m still learning
how
it
is

whether and if
you could fix a part, which part
would it be?
what
would the sticking
plas
ter
say?


Anonymous

statements

sat on these statements for weeks awaiting
to find the right-minded person to speak
56 summers (and a young 56!)
but it's draining from me: brain attacks.

lonely, a nightmare set in hospital
(worse, not knowing whose the nightmare is)
the staff change, shift changes, I’m going blind
long-shadowed in my body's sunset

physical, mental pain, frayed sleeved
hand trapped within my own body weight
neighbour losing hearing, he’s lost speech
we’re all learning in the same boat

live through, it does get better, find
like-minded souls, sat on these statements.


Richard Lewis

Friday 14 May 2010

Body and spirit


Interview with Reverend Brenda Lowe and Reverend Philip Winn


BL: Patients have so much time in hospital, time to think what's important. They often worry about what is going to happen when they get back to their home, worry they don't have the resources: 'I want God to help, but I don't know how to pray.' What I believe is so deep-seated, it's difficult to explain and many patients have that faith, we share faith and they feel like family.


PW: We see the difference between people who have hope and those who don't. There's peace there. Witnessing death makes it more real. Most people don't see death that often, but working in hospital...we see suffering.


BL: The attitude: is this suffering a punishment? I'm not sure if that's faith. These are times when people question God. It can be very positive, an opportunity to bring healing. A lady who was ill said to me 'I'm feeling very cross with God today.' We all feel that sometimes. People get guilty about it and they don't need to. People in the past had an unhealthy fear of God wielding a big stick. That's not God.


A lot of elderly people are ready to go, particularly when they've been widowed, want to be together again. They're ready, the emptiness, the loneliness, is within them. Then there are people who are in denial that their relative is old. A women who was ninety-two, her daughter was saying, 'She's giving up.' But the woman was ninety-two! Sometimes the family find it hard to let go... I find it very moving when a couple - one of them is dying - and they're sat holding hands - that's what love is.

PW: We ask: 'Are you able to share this person's life with us?' It gives us a picture that's not just the frail person in front of us. Research says people have a better end, a more peaceful end, with faith - and yes that would be our experience. It's the hope, death has no fears. Can't say people aren't frightened of dying - most people are frightened of dying- but it's the journey people are frightened of, not death itself.

BL: It amazes me always, people in their last moment when we give them their last rites. They respond when maybe they haven't responded to anyone for weeks. I've had people say 'Amen', or open their eyes. People become peaceful after being agitated. This week I gave the last rites to a women with very sticky eyes, she opened her eyes as wide as a child with a chocolate bar.

Death can be a great release for families. We can help people through the journey of grief. Us being there for the families in all sorts of situations. Maybe the relative is just not wanting to leave the person whose just died, or is looking for someone to blame. We help families deal with the burden, it's not a joy, but we can help. We talk them through the 'if only, if only' that can torture them. I remember a woman who couldn't leave the deathbed because of the guilt. Our role is often simply to tell those who are left behind: 'What you did was generous and right.'

PW: We can only do our best. I don't think we can have regrets. We're good at talking about things between ourselves so they don't become burdens. We know we have to minister to the next person who needs us, and that person may just be another phone call away and we need to function, and give them our best.

BL: We're good at talking to each other and good with the kettle. We believe we have a power that helps us in difficult situations. We never know what we are going to find behind the curtain round a patient's bed. We don't know what we're going to face. Got to find strength, praying as you go.