Patients reading PATIENCE

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

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

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

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

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

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


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

(Staff Nurse Mioji Baloguh)

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

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


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

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

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

Patience: coming into

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

Patience' defined as 'the ability to wait or endure without complaint'. The term suggests dignity and stoicism. Qualities that emerge from the participants in this book when their thoughts are expressed. For eg/ 'Coming into hospital for the fifth time.... (Mary Anandale)

 

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

Coming into hospital for the fifth time

coming into hospital for the fifth

hate to think of so many times

it’s a desperate thought

I don’t want to think it

get on and forget sadness

get on with it and remember only the

forget

who you’ve been with

where you’ve been you’re not yourself

I’m so glad that they come

I’m so glad that they come

I can’t say how often but they do

it’s action for yourself

to see someone

to see some with the same

perhaps the same difficulties

you are not alone

there are many people like you for better or worse

there are many people who like you

good people there are many

friends of myself friends of I

saw

my place

sat in my chair

saw my place sat in my chair

I can see so much from here

I wish

good

I can see I can hear.

Mary Arrandale

Anona Entwhistle

denial, anger, bargaining, depression and acceptance

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

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

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

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

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

Rebecca Guest

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

Reading PATIENCE x 2

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

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

(Penny Anderson, Journalist)

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

(Amanda Kilroy, Medical Researcher)

Reading PATIENCE - by Scott Thurston

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

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

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

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

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

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

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

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

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

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

A key message emerges in this book about trust – not only the trust to be won by care practitioners and creative workers such as arthur + martha, and to which end their creative strategies are invaluable – but also the trust to be granted to those older people in care contexts. As Stephen Watkins argues, the expectation of dependency that many of us have is one to be resisted, otherwise care can too often slide into control. As Watkins puts it:
'You mustn’t become dependent before you really need to – and also when you are dependent, you still should be allowed to make choices, be trusted to take risks.'
(bargaining, chpt 3)

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

Dr Scott Thurston

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

Masterful inactivity

Professor Francis Creed, Psychiatrist.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Pain and care

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

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

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

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

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

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

She was a very open person a very giving person.

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

definitely

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

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

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

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

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

Alison Creed in conversation

spy my shadow in the sun

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

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

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


Anonymous

Body and spirit

Interview with Reverend Brenda Lowe and Reverend Philip Winn

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

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

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

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

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

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

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

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

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

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.

Interview with Ian Clark, Healthcare Assistant

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

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.