PATIENCE (press release)

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

(Fiona Roscoe, Advanced Nurse Practitioner)

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

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

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

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

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

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

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

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

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

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

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

dementia support

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.

Parkinson’s Disease

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

by Philip Davenport

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

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

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

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

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

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

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

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

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

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

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

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

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

Medical Director - James Catania

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

Palliative Care

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.

souvenir

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

stages of grief: 1950

it’s the same a broken heart and physical pain

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

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

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

break

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

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

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

come or you just
let your
self
go.

Anonymous
Cherry Tree
2009

my mind is a kindom

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

time disappears when you're in hospital

time disappears when you're in hospital
nights are very long
days are just as

people seem to think I need to be entertained
I’m happy reading

among my friends of recent years
humorous stories and jokes

memories you create for future generations
remembered as jocular
things you do with your grandchildren
they will say

I remember
Granddad remembering

don’t
do an awful
lot

when friends die
certain instances trigger good/sad
life goes on
days are very long
nights are just as

forget awhile
then something happens remember

experience
death brings
memory



anon
24th Nov 2006

Amputation

(I’m not depressed but)

I was am
putated
that made a difference
cos I’m reliant
I have good glasses
hearing aid
amput
ation was the worst thing
that’s happened
I’ve got no dates

to rely on
in somewhere like this

the way of life
don’t get as many visitors
the way of
sedentary
dependent
life
adjust slowly
am puttee
(they’re very good to you here
I’m not stopping)
lived alone since
father died
long time ago can’t
think when
it’s terrible don’t think
I’ve got it written
I’ve not written when people
left

I’ve no dates
just addresses

– even got phone numbers –
that don’t mean any
thing to me

(I can’t even remember why you’re here)

the worst was

it slows up gradually
a cold fish cold

I’ll have to ask
never thought to make a note
gosh I can’t remember
(when did the war finish?)

I think my mother died
and I don’t think I’ve got a diary with
those dates
started and
retired gosh
– wait
I’ll get my diary
I’ve not got any dates at all
none that matter.

(I can't even remember why you're here)


Anonymous
2006

a robin red breast

A robin red breast
in a cage


Harry Wantling
2008

part of the Brackenhurst Collection

today: the garden

I’m filled with roses

remember
hydrangea

lilac fuchsia
snowdrop bluebells

reawakened
a memory of those flowers

a memory of
my brother
I looked up to him
there was a birdcage a stork dove water round
cleaned out and painted
in Manchester I can remember good times

not the weeding
not the daffodils

I don’t forget
granddaughter swimming, memories
jigsaw

such good fun in the war
shrapnel
all them bits that were fired up
red hot in a can take it back in a biscuit tin
10 shilling for the lot

Strines Rd Marple
walking down
to school

never been back you’ve got to
look forwards
I’ll always do that

to the shelter underground rocks
school from Stockport from Cheadle
our bus fare for food
back to the family 3 sons and a daughter

today:
I’m filled with the feeling
being upside down

remember
a number of various
I can remember it all
saying it that’s a different thing.

Victor Richardson, Joyce Knibs, Tom Dolan, Victor Richardson, Dorothy
(+ William Carlos Williams – from Asphodel, That Greeny Flower)
November 2009

constancy

hospital
a huge mountain between my
heart and tongue
ill-starred
not important
rubbish
brought here and left
a mountain
if I could pray
prayers would move me

***

Fellows in the Firmament!
it is up to you to get right
down to you, getting better
(***
certainly is
***)
to be helpful with those helping you
determination will make a difference
to be very patient
is a difficult art
you’re not born such
constantly
learning
you get old
as the northern star.

Anonymous
11 September 2009

Little tree

December 4^th and a Christmas poetry session that would not be complete without E E Cummings Little tree. It was nice to see the marked progress of the E1 group, Tom had gone home, Joyce was able to say certain words, Victor was much more able and we had two new participants Philip who could not hear and Joan who liked to sleep. We constructed poems of Christmas feelings past and present and looked into the little tree poem to create our own version. The group were wonderfully open and when Joyce struggled on a word Victor would step in. A tree poem was imagined and constructed with the winter leaves were withering away, but Victor took me aside after the session and asked us to paint a more positive image, I hope that comes across.

The afternoon session was spent with four remarkable women, one whom had taken part in the previous workshop. Two sisters Eileen and Elsie told me their ways of being, and Ida described the most intense relationship with her own Aunt. What struck me when speaking to these women was how much loved ones come into our minds when we are alone and still and what a reflective time of year it is. The sessions always are a journey, as you do not where they will lead and who you will meet; in the words of Ida “it’s a Peter Pan journey.”

Guest writer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Interview with Philip Davenport, 2^nd September 2009