patience

PATIENCE (press release)

2010-10-22T04:26:00.000-07:00

“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/

a must to read

2010-10-07T05:07:00.000-07:00

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

poems by dementia sufferer's

2010-09-28T06:04:00.000-07:00

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

Strength of Steel

2010-09-27T03:13:00.000-07:00

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

2010-09-24T05:44:00.001-07:00

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

2010-09-22T02:13:00.000-07:00

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

2010-09-22T02:01:00.000-07:00

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

2010-09-21T11:00:00.000-07:00

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

2010-09-20T02:27:00.000-07:00

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.

Patience: coming into

2010-09-17T02:36:00.000-07:00

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 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

Images of Patience

2010-09-16T04:59:00.000-07:00

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

The Art of Nursing

2010-09-15T07:53:00.000-07:00

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)

WARD D3

2010-09-09T08:22:00.000-07:00

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.

denial, anger, bargaining, depression and acceptance

2010-09-08T03:44:00.000-07:00

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.

Close-reading PATIENCE - by Matt Dalby

2010-09-07T07:23:00.000-07:00

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.

Reading PATIENCE x 2

2010-09-03T06:48:00.000-07:00

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

2010-09-03T06:45:00.000-07:00

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.

geriatric, older, elderly?

2010-07-18T07:30:00.000-07:00

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

2010-07-18T07:26:00.000-07:00

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

Download Patience

2010-07-16T06:36:00.000-07:00

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

Masterful inactivity

2010-07-08T04:55:00.000-07:00

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.

Pain and care

2010-06-03T13:22:00.000-07:00

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

bear-baiting for the queen

2010-05-17T02:46:00.000-07:00

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

2010-05-17T02:21:00.000-07:00

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

2010-05-17T02:19:00.000-07:00

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

Body and spirit

2010-05-14T10:41:00.000-07:00

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.

dementia support

2010-05-13T02:50:00.000-07:00

Staff Nurse. Ruth Breslin

The dementia support we offer is for people of any age – here it’s given so that sufferers can stay in their own homes as long as possible, living their lives as fully as possible. At this day hospital we provide specialist assessment, nursing support and O.T activities for people with various types of dementia. We hope this will prevent the need for a hospital admission and allow relatives / carers some much needed respite.

There are many different types of dementia. Some are related to diseases such as Alzheimers or vascular conditions such as strokes. Depending on the illness, people might have short-term memory problems, disorientation, be anxious or agitated or develop problems such as disturbed patterns of sleep.

We also support people with less common illnesses such as fronto-temporal dementia which can involve very challenging symptoms such as obsessive-compulsive behaviours or marked personality changes. At all stages of the person's journey through dementia there are hurdles to overcome, for both the individual and their loved ones.

Our role is to help people understand what they are going through, and together find positive, constructive ways to look to the future. This may involve helping people to come to come to terms with their diagnosis and explore their feelings and anxieties. For example, some people may feel angry and need emotional counselling. Others may need practical support to understand their symptoms or treatment plan. Educational support is also vital. Certain dementia symptoms may require special consideration in carers; for instance, Alzheimers can cause problems with visuo-spatial awareness which affects a persons' recognition of depth, distance and what an object is. Someone with this problem might walk from a carpet onto lino and think that they should be taking a step up, when the two surfaces are actually flat beside each other. This can cause them to stumble or fall.

We also see many kinds of language difficulties. People might remember songs, or recite poetry, but be limited in other uses of words. I knew a gentleman who could recite Shakespeare in any accent you like, but his own self-expression was stunted.

Individuals can sometimes get lost in the illness and we fight that by helping them create books that tell the history of their own lives. The patient is transformed from an anonymous old lady into someone who has flown planes, who has lived an amazing life. A book like this is very valuable, especially when someone is in long-term care; it becomes a memory guide to the person and a prompt for staff. It’s an anchor for the patient and it’s a point of contact, a talking point.

You need background to understand people. Local history, personal reminiscences, things to hang a conversation on. From there you get to know them more deeply. Everyone’s needs are so different. Some people actively seek help, others are more reluctant to ask for it and we have to gradually earn their trust.

We achieve a lot once we’ve got trust. Its very rewarding to see people getting happier and growing in confidence every day.

Many people who are referred to us understand that they have a diagnosis of dementia. Because of that you can be honest and trust can then build. People start to understand who you are, they open up to you, which is vital because dementia is in the mind.....unseen, it has to be talked about before we can treat it. It is so valuable for the person to know that the scary things that are happening to them, such as hallucinations, are part of their illness and that we will work hard to find the right medication to ease them. It is a partnership.

The care philosophy we use is based on the work of the late Tom Kitwood, who pioneered the person-centred care movement. Kitwood once said that to treat people as if they were objects or consumer durables like a TV is "grotesque". But, in the current ecconomic climate, it is easy for healthcare to reduce people to numbers or statistics. Dementia care nursing has, historically, been under-valued and overlooked as a specialist area of practice. But the nature of our patients' needs and their vulnerability demands that we need more - not less- skills to work in this area. There is a lot of emotional giving in dementia care. The reality of person-centred care is that we have to go the extra mile. Our client group need people to spend quality time with them and they deserve committed, compassionate, well-trained staff who understand their needs. That’s what keeps the patients safe and physically / emotionally well. We work hard to keep the atmosphere calm and uplifting, from the music we play to the activities we undertake. We also have good relationships with the people around the client too, relatives, doctors and other health workers. Close teamwork is essential.

When people move on, we miss them terribly because we’re very much a community. We get relatives coming to visit at our Christmas Fairs, people from the past pop in to say hello. I always say: “Have a cuppa if you’re near, let us know how you’re doing.”

There are days when the job can be tiring and demanding, but it’s never to do with the patients. They keep us going on the tough days! It is the politics, red tape and paperwork that causes the most frustration.

We never forget though, that however difficult our days can be, it is the carers who have the hardest job of all. They never cease to amaze us at how they keep going- sometimes under extreme pressures and even with their own health problems. When we come off duty, we can relax and re-charge our batteries. Our carers are on duty 24/7.

Caring and dementia

2010-05-11T03:24:00.000-07:00

Anne Sadler and Anne Parry interviewed at Bluebell Ward Dementia Day Centre, The Meadows, Stockport, 2009

Ann Parry

Our job? Making life a little better, making it fun.

Anne Sadler

Treating people as you’d wish yourself or yours to be treated – as individuals. People aren’t a condition, it’s individualised for all of us. As health professionals we are in a privileged position to be with these people. Carers are often talked about as the ones who have to give their personal lives, their time, their caring, and so on. But the flipside is what we get from it- we get people’s histories, lives, wisdom.

Ann

We also get their trust. Making them feel wanted, because they might feel they don’t fit in anymore and they need reassurance. We can give that, among other things. You feel better about yourself because you have given something. I’ve never wanted praise, just that the patient feels settled and enjoys the group. If I can give that, I feel better.

Anne

You might not be having a great day, but if you catch glimpses of people, it brings you back to where you are and what you’re doing. It grounds you.

Ann

What we’re doing is caring for someone. We give life. We give choices, so they can make their mind up about things. We give them our attention.

Anne

Compassion fatigue can happen, I’ve seen it. The only thing I hope for is that if I burn out that I’m able to realise, because that is the time that I give up this job. If your compassion goes, you should go. A partner can lose compassion. They have to deal with it night and day, but we can go home at the end of the shift.

Anne

We try to keep sight of the fact that these people are made up of their own lives, which they can articulate and feel, despite the dementias. We need to keep listening, maybe listening more intently to people who are unwell. I liken it to day-to-day conversations where I will listen with half an ear. At work it’s very important that I give my full attention, truly listening.

Ann

Otherwise you make assumptions and they get frustrated.

Anne

The way people behave is explained partly by knowing their history, it helps you piece together what they’re saying now. I remember 30 years ago in residential care a lady with fists clenched, shouting. It didn’t make sense at first, but then it transpired that she was bothered about something that had happened from years gone by. That was the essence of it.

People cope with dementias the same way that people cope with physical issues. They get the strength from somewhere, faced with any illness.

Ann

With dementia, as with any illness there’s some who fight and some give in. Some want to be looked after, dependent. If the carer is fed up and doesn’t want to give care then these people have problems.

In the poem written in the workshop I liked the image of dementia being a bit like getting off a bus in the rain and not being able to tell where you are.

Anne

I like images of dementia to be more than just confusion. I like them to be lighter and brighter, that it isn’t all a dark journey. That’s what I’d like to get across to the general public. TV images of dementia as sadness I don’t agree with. You always get this awful chamber music and shots of gravestones. There is happiness too. It’s not all the time, but it is there. And are any of us happy all the time? No!

If we can help channel the happiness – and the anger too - that’s our job. If we can take some of the anger it helps them. It’s not always pleasant, but it isn’t about us it’s about them. There’s a balance to be struck and people who attend as staff are aware of this. People’s emotions change as their illnesses progress. Some kind be insightful at times which can bring comfort, but at times can make them angry. “Why me?”

Ann

In the early stages a dementia can be awful, especially in young onset. People giving up jobs, big effect on the family.

Anne

Part of our job is to help people with that understanding. People can be angry, seem nasty, threatened. But it’s up to us to look beyond that. When I do home visits, very often it’s my job to help them maintain independence, not to take it. People worry about independence going.

When we talk about independence going, we often talk about this big whole. But there’s fractions of independence and they are important, little flags of independence. So for example, self-care might be very important to one person and not to someone else. Social independence – just the ability to socialise – can keep people going. If you chat to someone, that’s your choice and you’re exercising independence. A lot of it comes down to choice. It’s the same with our help. If we explain what we are doing and they give assent, then they are still showing a sign of independence.

Interview with Ian Clark, Healthcare Assistant

2010-05-10T12:41:00.000-07:00

Cherry Tree Hospital, Stockport

Every morning I come in – and I’m the first person the patients see. I try to make sure it’s a friendly start. I’d hate to be woken with someone giving orders: “Wake up! Get showered!” People are poorly, frail, elderly, sometimes they’re forgetful, sometimes they’re not good at speaking… I always say: “I’ll give you 5-10 minutes to wake yourself.” It makes all the difference, a big smile, the expression on a face.

I ask them how they’re doing and I also check with the other staff to see how the patient is. Certain patients never get a good night’s sleep, they only sleep well in their own room. Here they’re out of their house, out of their routine, it’s totally alien.

Whatever help I give to patients, I ask myself first, “Would I like this situation?” I put myself in their shoes, it’s commonsense. People here are frail and you’ve got to support them all the time, keep asking them if they’re OK. My last shift was 12 hours and it was difficult, it drains you, all the little things. But you’ve got to give everyone the same care, it’s what they deserve. I think of my mum and dad and I hope they’d get good care. I hope someone looks after me when I’m in that situation.

From a patient’s point-of-view, hospital can be very frustrating. They’re hanging on for someone to take them to the toilet, for instance. It’s humbling. They might get in a mood and it can last all day. To change from independence to asking permission is confusing for people. Yes, some independence is lost, but we’re actually trying to help. Some folks look at us as if we’re the enemy and I have to reassure them WE ARE HERE FOR YOU.

Who copes best? Patients who have visitors seem better; they have something to talk about. Those who don’t get visits – well, it must feel heart-breaking, it’s going to play on the mind. A man here, he gets irate seeing others having visits. It’s doubly isolating because he won’t speak about it to us. If I’ve got a spare 10 minutes, I take people outside into the hospital gardens.

At the end of the day, it’s good to see them tucked up and safe. You can tell they’re happy and content. I can go home without worrying about them, knowing I’ve done a good job. Then if the patient’s better and they get back their own lives – all that effort and patience was worth it in the end.

Parkinson’s Disease

2010-05-04T12:37:00.000-07:00

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

Palliative Care

2010-04-28T13:39:00.000-07:00

Sister Debbie Smith interviewed

by Philip Davenport, at Bluebell Ward, The Meadows, Stockport, 2009.

Palliative is a very broad word: looking after someone when there is no longer a cure. Anything from two years to two days, a whole range. Palliation is based on care not cure – symptom control to let someone have the best quality of life. To me, it’s searching for the real person, trying to give them control of what’s happening. Their life is coming to an end. They need control if they know what’s happening and need to be given choices; if they don’t know it’s even more complex.

I chose to do this work 15 years ago. A holistic approach is the core - psychological, physical, spiritual – that’s the crux. People are not just a bag of symptoms or tests. Plus, they sit within a family and you talk about it all with an appropriate family member too.

What is a good death experience? In whose eyes, mine or the patient’s? You can make death appear comfy, distress-free, with drugs. But you can also go through this talking. It’s the patient’s experience, it’s their’s, their control. Yes there is such a thing as a good death, listen to what the patient wants. Perhaps my patient wants to go home. It’s not what I would want, but it’s good for him. His decision, his good death experience. Most people die in hospital, but they actually want to die at home and we should support that, recognise it. But the support needs to be there, the family need to be able to cope, or else it won’t be a good death because the family are left with the pain.

Giving a frame to the end of life, a plan of what to do. Providing for all sorts of needs. The end of life tools are important, planning is important. Liverpool Care Pathway is very good example. This area is improving all the time, money is going into it, people recognise it as an important part of care. We’ve all got to die.

This area is our speciality, this thin line between palliative care and long-term care, where you can still correct the correctable. We don’t think, “Oh they’ve gone palliative, we can’t treat them.” But we won’t go to the extremes of care they will in acute. Most people who come here have already gone through that system. We won’t go to the aggressive end of treatment because it’s upsetting to no good result. If someone’s got terminal cancer, say, we give comfort not cure.

It all depends on the patient. Often they don’t know they’re at the end of life, or they might not want to talk about it and you have to honour that. You reflect back, the patient takes the lead and you reflect back. They only go as far as they want, it’s very gentle. Are you the kind of person who likes all the details at once, or do you like a little, bit by bit? Most say the second. Explanation and listening are key. It’s the same with the relatives: “What do you know?” They might be anxious, frightened. They might not have been told much. Might’ve been told there’s more hope than there is. We actually have to tell the truth: “Your mum’s only got a few days.”

It’s definitely a journey, could’ve been going on for years. Many have had surgery, relapse, treatment, relapse, surgery, relapse. Then suddenly it all stops. We can only manage symptoms. Some people are very accepting, they don’t like it but they accept. Some people ask you to end it. Most talk openly to us about it, but they’re a bit more guarded with the families because they don’t want to upset them. We work closely with chaplains, volunteers, consultants – it’s a team effort. The staff can get upset too and we support each other.

We get sent ‘symptoms’ and we give them back their life for a time. We give them quality. They might have a few days when they can appreciate their family, their memories, their time. It depends on how you look on things; my cup is half full. At the end of life there’s a lot we can do. If it’s your last week of life and you sit out there with a cigarette and a beer, or you get to see your dog, you have a better life for that time.

It’s not all doom-gloom, we have a lot of fun here, a great atmosphere. There’s a man in here right now interested in perpetual motion and his wife’s brought all his stuff in, bolts and screws all over the floor. I don’t mind. People bring in takeaways. We had a bellydancer and one chap, his eyes nearly fell out of his head.

Communication keeps it all together. And it’s not what you say, but how. And it’s even more important what the patients say to you. Or what they don’t say; body language. Very often they lose eye contact if they’re scared. It’s opening a can of worms, but I always step in and talk about it.

Who copes? People who have had adversity – for instance, chaps in the war – people who have dealt with that cope. They seem to be more accepting. Sometimes people with a faith cope better. But beyond that, who can generalise? You’ve not dealt with this before, there’s no set rule. People who are well-informed and up to speed handle things better – they have control. If they can advance plan, they still feel it’s their life. People who have been kidded along or misled can’t get beyond anger and the whole thing is difficult to accept. More informed people have less damaging emotions to get over. Same with relatives, they don’t need to go through some collusion where no one talks about it, it’s more open.

There are myths about palliative care, that it must be miserable. It’s not, it’s an honour, a privilege. We have a lot of laughs, when it’s appropriate. I hope someone will be there for me like this, at the end of my life. There are a lot of myths about death itself, people think it’s scary, sinister, because we are a death-denying society. It’s denied, behind closed medical doors. People paint black pictures, but I think it’s becoming more open.

The right to die. I’m a member of Dignity – I think if you have an incurable illness, I think you should have a right to choose. Shouldn’t have to go to Switzerland or wherever. Also, that a family won’t get prosecuted. In Holland it’s physician assisted, in Switzerland people pick up the pill itself. But palliative care dying will create far less stress symptoms; someone can die with dignity if its done well, properly.

What have I learnt from all this? Can’t put it into words. What people have shown me is the fantastic dimensions to the human spirit. People never, ever cease to amaze me. It is a privilege to be there at someone’s death, and to do it properly you have got to give of yourself. It’s important to get it right. You only get one chance to do it right, or it stays with the relatives. Because the memory of those who have died lives on in us who are alive.

One Good Friday

2010-04-14T02:29:00.001-07:00

awful to go
got the call
quarter to three
sister said come
said very sorry
such a shiver
oh no he’s
gone broke my

h e a r t

couldn’t help
still want
them back after
all
his good
points
they stick in

Vera Stevens
20 October 2006

paracetemol soup

2010-04-13T07:11:00.000-07:00

love
(what’s wrong with it?)
can’t do without
the most important drug: love
it’s true
the bank writing me love letters
security, savings, minus, plus
my dad singing over the rainbow
throwing coins in the air
noisy
movement

my brother is bent double with arthritis
I am an expert in pain
disabled incurable
movement
backache we’ve all got it why haven’t you?
you’ve got to drink gallons and gallons of
paracetemol soup
we’ve all got it like income tax
there’s no escape
bloody hell, miracles
luck
love

Louis Marks, Margot Blake, Gloria Ordman
October 2007

of note

2010-04-13T06:57:00.000-07:00

have you been back
where you used to go?
to the old part of town
a drawer full of
dark

clothes, flat dancing shoes, fate
got so many wrinkles I can
screw my own knickers on
what I remember is
history

saw the Mayflower
coming in here on a Friday
I have memories of long washing lines
stretch from one place to
another

field: it’s good to be put on earth
money doesn’t come into it
learning to slow down: a hard lesson
working in kitchens of
stone

I’ve not composed any music
nothing of note
what have you and I done
except the pas de
double?

Phyllis Hollinshead, Harry and Beaty Wantling, Hilda Hewitt, Bob Mather
2007

musicality

2010-04-13T06:10:00.000-07:00

sounds
bring something out of you
like an old fashioned train

get to a certain age
and you get walked over
the heart sounds are drowned

a revving up engine
something about sounds you can distinguish
pieces of sound

snap shots
pictures on a heartbeat
over the clavicle

that’s a normal heartbeat
a rough murmur
a train going along a welded rail

diddley dee
how does your heart sound?
ah diddley da

the drum in my ear
jungle drums
a steam train

how does your heart
sound
when it’s aching?

Collaboration
Marlhill Court, Stockport
23rd February 2007

ever

2010-04-13T04:06:00.001-07:00

a thousand times goodnight

2010-04-06T10:26:00.000-07:00

sleeping daisies
waking up the senses
awaken upward the mind

nurses see the
touch
the

bitter scent
swash
the cuckoo buds

from the beds
floating petals
throw

lines dancing
white couplets
float over dead water

white life
paint the
meadows

Anonymous
2007

2010-03-31T02:47:00.000-07:00

One of the delights of putting together a new collection- whether its for a book (as in this case) or an exhibition, is re-visiting and re-finding artwork. Here is an example I just found:

It is'nt the coffin

that carries you off

its the coffin they carry

you off in.....

a wonderfully naughty bit of re-labeling on an old medicine container.

all infection this sun sucks up

2010-03-30T08:34:00.000-07:00

Had we but world enough and time it's the
End of the line for our favourite party
The jaws that bite the claws that catch
Long of face and short on patience
Hand in hand the edge of the sand
Harbours in this parched city

Hairs be wires, wires to her head
Essential maintenance for the dead
This anger lady is no crime
You’d rather be stealing breath than
Saying:
Amen to all men, amen.

Theresa Daulby
2006

atom split

David Smith 2008

yearby yearning

2010-03-30T08:22:00.000-07:00

sitting looking out
the windowaiting
for them to comehurry up
hurry up
minutes
hours
days
it seems
forever
Pauleen Eaton
2007

golden lads and girls

2010-03-30T08:06:00.001-07:00

they look like me
but
not
of
limb
the girls of summers gone
they look like me
but aren't
like me:
age it's

a different youth

age:
an old man loved is winter flowered
look at me child
of flesh but
not of brain
they know
such
a lot
of things these days

May Ferris

The boredom

2010-03-30T07:39:00.001-07:00

the b o r e d o m
the nothing-to-do nothing-
to-do
there’s nothing real
until
company

Gladys
27th October 2006

simple questions

2010-03-30T07:21:00.000-07:00

always a good memory
very
important
to
think:

remember
something more
losing your parents
your wife
that you never forget

going to school
going to communion
playing football
nothing really
simple questions

certain things
stick
earliest un-forgotten
in the front room
in my mum's arms

all
simple when you know the
answers
remember them today
forget tomorrow's memory

anon
24th Nov 06

A nearly man

2010-03-30T07:19:00.000-07:00

I don't look in the mirror
only when I can't avoid it
every
other
day
when I shave

when I was younger
when I used to go to the dancing
bryllcreme on my hair
I had hair then
Old Spice
dab on

thats what we used to do
get ponced up
my features
altered
with
years

I've always been a nearly man
just
an ordinary Joe
a nearly this
a nearly that
I used to think I was

good at my job
I was a gardener-painter
a nearly man
ordinary Joe
in the street
I'm leaving

certain things
certain things denied
in your life
you don't tell
when you wake up at night
you go back

you go back to the war
to the POW camp
when the daylight's
not broken
through
go back years

waiting to sleep again
your wife snoring
next the marches
the POW camps
being captured
the treatment

yesterday gone
tomorrow's out of sight
the next day does not come
time's your own ambition
you are free
not tied to

your life
certain things
certain
things
you don't tell
a nearly man ordinary Joe

Harry Wantling
October 2006

The giant city awakes

2010-03-30T07:16:00.001-07:00

The giant city awakes but
I am going down the pan
I have lied and cheated
my way through life
truth breaks through

Hilda Hewitt

2008

Switching your thoughts

2010-03-26T03:05:00.000-07:00

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

now my genius has gone

2010-03-24T03:16:00.000-07:00

Relief

2010-03-24T02:28:00.000-07:00
“You deal with pain in your own way.” anon 2008
Some get through with determination, others distract themselves. Some focus on the pain (willing it to get worse in some cases helps to reduce it) some people pray, some people take the drugs offered. Others shut down mentally, still others find that creativity can help to put their troubles outside themselves – for instance, writing or drawing can be a blessing. Often pain seems to come in different guises day-to-day and needs to be met differently.

Relief, yeah relief relief
very much so
a medication to ease
then you can carry on
marring the pain
a blanket over

when you get the pain
you drop right down

say you're standing on a stepladder
then you
drop
take the medication
and you're back on the ladder

anon
17th October 2008

mary/margaret

2010-03-24T02:23:00.000-07:00
illness is change
chance
not accepting
a throw of the dice
I’m OK/you're OK
I'm going to live
you too
will not abolish illness
don’t fight
allow it in
be alright here
they’re looking after heaven's latchkey
looking after all the time
a paradise
will not abolish
see them everyday nurses
angels
angelas
feel looked
down up/on
looked after
one of the most important things
I’m glad
Ive got
pair of dice, we
(mary margaret)
the wings to fly to heaven
well looked after
they’re doing their best
couldn’t wish a better
chance angel

Mary, Margaret
31st July 2009

be patient

2010-03-23T05:59:00.000-07:00

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)

2010-03-22T13:18:00.000-07:00

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

my message is to you

2010-03-20T03:17:00.000-07:00

hope is your life
together we
hope
each looks after each
friendly nurses speak
look for
hope is swift exchange
my tablets my routine
hope for this
take pills like new ideas

swallow
hope
I listen to children’s advice
swallow’s wings
get on with life’s hour
accept
strokes hearts bowels propaganda
each other
what journey you’re facing
and what hope

do you get?
(would you like to join our discussion?)
everyone’s lonely in their own
true journey
hope is swift
can’t take it out
can’t shove it away
we’re all
in the end
swallow’s wings.

Group
Cherry Tree Hospital
2009

o lovely walls

2010-03-15T07:51:00.000-07:00

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

2010-03-10T01:41:00.000-08:00

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)

Care of Nurses

2010-03-09T13:18:00.000-08:00

I’ve seen a complete deterioration in care of the caring profession in terms of how well they are looked after by the administration - no place for staff to go and have something to eat. When I trained and you were on night duty you could go and have the same half hour off the ward as you would during the day. And a proper meal cooked in the middle of the night, now often they don’t have the opportunity. If you’re not looking after the staff, how are they going to be giving of themselves?

Staff rooms in the early days, doctors taking tea with Sister, and Sister had a big room and literally everyone could sit round and have tea. And where would you get that now? The staff are in cupboards, and they complain then about lack of communication between disciplines; doctors and nurses, or nurses and physios – but you have no means, no theatre.
Alison Creed. Retired

Life events (and difficulties)

2010-03-08T03:37:00.000-08:00

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

night pains

2010-03-04T08:16:00.000-08:00

I feel tight
feel clempt closed
always thinking trying
nighttime terror couldn’t tell you
a bit of a trouble-ful night
pains

hospital comforts: the beds are alright
the nurses are alright
the specialist said, “I can operate but…”

furious winter is in our stars

all the time many a time
I m always trying to look up
a-wondering what
to think of life itself
a bit of a trouble-ful night
pains

they do damn good work
specialist saved my legs for me
he was practically dancing

hope is a lot of things

group
Cherry Tree
2007

parachute landing in jungle terrain

2010-03-02T04:23:00.000-08:00

I’ve seen me whack
done me jumps
floating down Egypt Cyprus Malaya

that tattoo says in memory of Mitch
killed in Malay jungles
a tattoo that hurt me
I’ve killed and I’m not proud of it
(or they’d kill you
prisoner of war – whatcha gonna do?)

ever tried to pack a parachute?
bloody handfuls
like trying to get a bed into a pillow

they won’t let me out of here
told me straight I’m not for getting out
driven to die
very very very very
bored in the brain
so bored it’s ridiculous
bored to the ears

these wards are in lost time

landing in jungle terrain
we laugh
butterflies

what’ll we do after the war?
lost a lot of weight
don’t know if I’ll get a visitor
my wife died and I didn’t go to the funeral
I’d jump
to go as I want
even prisoners are allowed to
walk to the great door

parachute regiment I’d jump again tomorrow
you worry til it cracks out
cracks out open and you’re floating

down
down
down

Albert Burrows
Cherry Tree
2007

football

2010-03-01T03:07:00.000-08:00

stanley matthews georgie best nobby stiles sammy much roger byrnes busby babes in packs in a set players 10 or 20 cigarettes on the back their age height history wifeswaps then in germany in munich early morn the takeoff

I do as best I can I do the journey from here to there is no different to any other journey more’s the difficulty is keeping your friends cos you cant get out the wheelchair

known as the munich crash the ground frosted fog photos of them on the runway matt busby sandy busby the son (good at spending money) when they emerged the babes were near unbeatable on £15 a week put edwards on he could cream the lot dog them clobber them sort em out

you cant get out the wheelchair and start getting angry telling the fellow where you want to go well lets say it does make you feel you’re not getting anywhere it’s just a question of administration

stanley matthews turned up at 8 in the morning running barefoot feels free blackpool sands (soak your feet in cold water you’ll walk a million miles) georgie best kidded the goalie banged it a brilliant shot but he done himself in daily brandy-soaked

you feel limited in the weight of this you’re not designing the journey the other person is I was an apprentice pro blackpool fc loved every minute gave back every penny

the footballs were heavier then leather soaked in rain describe a great god the best he was a tippler of everything two or three wives he had so many women over the weekend hundreds seen him train in the park a dangerous man a danger

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 up nurse sort the ends out I’m sat in a chair thinking literature I cant express

re-match: duncan edward he was only 19 in munich on the runway play was awhile ago you’ll hear them you’ll hear them a mile away no problem just a trick of the foot.

Allan Whittaker, Frank Wigley
Cherry Tree Hospital
2007

souvenir

2010-02-26T13:08:00.000-08:00

there are a lot of souvenirs in my head
raining
the water in lines
falling
the gutters
the line going
I remember everything
an older brother
he was running

the river
boots
running through

it was raining and I remember
the planes passing over
making a boom boom boom
I’d sit on the window sill
curtains drawn in case there was a bomb
watched the children through the curtains
on rainy days

head in a fog
frustrating, confusing, annoying

it was raining and I remember the ground
wet and muddy, I had to wear Wellingtons
splash splash splash
through the
raining and I remember
the old ladies couldn’t go out
so grandma and I went to the pub
to get them guinness

your head in a fog
horrible
because you have it in your mind
but what I remember is right

remember playing by the
river and my shoes falling off and being washed
away
(I didn’t get into trouble but the other kids did)
used to love lying in bed
listening to the rain pattering the window

it was raining and I remember I was
a little devil
when I was young, when it was raining
raining in Alexandria
lightening
and then, for a month no rain
then again, rain really bad
looking out through a window
and swimming far
the fruit of the beach
catch it and eat with a spoon
faraway, the fruit
when it was raining it was raining hard
there was lovely fruit
I was mad, I was a devil swimming
taking the fruit from the rock
the fruit from the sea, rezza

raining women’s voices

branches of trees and old tyres
being washed down
even the baby’s dummy
gutters on roofs overflowing
leaves and pieces of soil run down the walls
cats and dogs
want to get inside

what does it feel like to forget?
it can be confusing, frightening
especially if you’re in the rain
like
getting off a bus
when you don’t know where you are

it was raining and I remember
Gene Kelly singing in the rain
in a musical, a great musical
Gene Kelly dancing under an umbrella as he sang
Morecambe and Wise singing
the same
funny, I remember singing at school with the other children
‘rain, rain, go away, come again another day’
raining and sunshining
I remember seeing a rainbow
remember it poured most of this summer
remember splashing the puddles when I was
a child
getting very wet
having to change and
dry in front of the fire.

Fred, Patricia, Yolanda
11 September 2009

conch

2010-02-25T08:36:00.000-08:00

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

Coming into

2010-02-24T03:27:00.000-08:00

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
Stepping Hill Hospital

a locker

2010-02-23T02:10:00.000-08:00

a locker is a sort of miniature you
haven’t much room on-ship
roll your mattress rope around
hammocks slung sausage-like

these curtain rails carrying

a coiled rope and a heaving line
panic at the dock everyone swearing
doesn’t bother me a cramped situation
eight fathoms for your morning wash

around the beds in the ward

a rough bloody outfit
you was on the frontline
some of the roughest buggers ever
I’ll take you all

remind me of

a good rough house in the pub
was a favourite occupation
thorough gentlemen
below decks

hammock rails

remind: dear me you don’t half meet characters
limbs and bits of heavy engineering
the place exploding
you hit the floor

the clews as they call em

undo them strings beg a kiss
the nurses
stealing sailors’
hatbands for ribbons

Allan Whittaker
Cherry Tree
2007

homemade scones

2010-02-22T03:04:00.000-08:00

my daughter’s getting me somewhere
to live
it wasn’t easy
don’t fight allow it in
they’re looking after me all the time
is

a helpless helper
I see them everyday
feel I’m being looked after
my daughter will be down
one of the most important things
is

Angela Jenkins, Margaret Brown, Mary Murray
Cherry Tree
2009

wheelchair

2010-02-21T04:30:00.000-08:00

walking
an outlook
an outlet
your body don’t dilly dally
does what you tell

marbles on the way to school
for a long way flick it through
play for each others’ cowboys and indians
late at night
in the fields around farms
make dens of
long-seeming summers
in the 1940s

the first
thing is
to keep
little things adding
to a bigger step

on the fringe of farmed fields
bounded by the Mersey
we’d walk over the iron bridge
time working horses
the river a-flooded with ducks and geese
it’s all we had
kids walking the road home
was better frittered

what’s so good about sitting down?
if you’re going
for a walk
get your shoes and
go

Group
Cherry Tree 2009

wireless

2010-02-20T08:20:00.000-08:00

a couple of operations
the prostrate region (nothing to look forward to)

nothing doing
nothing a lot of pain
look forward to talking to your wife

don’t watch the telly
don’t listen to the wireless
nothing I spose
dropping off to sleep
the fall of a sparrow
you do nothing you’re a nothing

absolute

your best plan is to go
(there he goes, off to the toilet
had a fall)

your outlook is nil
go to sleep don’t blame ya

married 65 years
keep your hand in pleasure

hold
real things
valuable qualities

but what can she do
she can’t look after me

is there anything? nothing?

annoys me this number of ill people
their chances are not good and mine are the same

and one of them shall not fall on the ground without

my wife catches my eye

Anonymous
Cherry Tree
2007

GEORGE III

2010-02-18T06:11:00.000-08:00

PUT THE CLOCKS BACK

it’s a timewarp here shortens the day wakeup wakeup alters everything breakfast-time doesn’t mean anything

SO THEYD WORK ASTRONOMICALLY

your jewelled stars are not allowed cut off from your possessions cant have any treasures only uniforms we are all tea-squeezers the refugee syndrome non-person things

PEOPLE SAID HE’D STOLEN TIME

things might not be worth much but it’s the story behind that gives value each of these people these subjects these things are things you can’t do without

GEORGE WENT MAD

I watch a lot of telly.

Ray West, Freida Brobart, Monica Smith
Cherry Tree 2009

photo © Lois Blackburn 2010

grit

2010-02-17T10:00:00.000-08:00
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

2010-02-16T02:06:00.000-08:00

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

diphtheria

2010-02-15T02:41:00.000-08:00

the ambulance bringing
ding a ling a ling

she can remember them ringing
them bells

it was one of the common ones
the cough
a sore throat easily contracted
diphtheria scarlet fever
five years old
the cloth stretching across the wall
my father raised a blade

the ambulance bringing

take swabs
of it the children terrified
isolation hospital
their faces
thought they’d be red
scarlet fever
diphtheria

ding a ling a ling

keeping them apart
lockjaw
didn’t talk
to em too scared
peered through a washroom window
one of the kids saw me said
I won’t tell
remember

them ringing the ambulance bringing
ding a ling a ling

them bells.

Dora Boulton, Frank Bryan, Olive Wilson
Cherry Tree 2009