patient quotes

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

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

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

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

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

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

“This is a miracle.” (Joyce Mack)

Life events (and difficulties)

Recently I had a wonderful opportunity to interview Alison Creed. Alison has a background in medicine and the arts and unique personal insider experience of the following health conditions:

Cancer, osteoarthritis and hip replacements

I don’t define myself by that one episode of illness. I’m aware meeting people who were being treated that they could see this was going to dominate their future, beyond their recovery. I have just reached over 5 years since my recovery, which is supposed to be some sort of milestone. With different cancers you get into different statistics about chances of survival.

I am aware things can happen just out of the blue. At the age of 21 I was in a car with my parents going to see my brother. We were in a very bad car accident, from which my parents ultimately both died. So I’m aware, things happen, that’s my attitude. And cancer is just one thing that can happen. You have to deal with things as they come along. Life goes on.

I think some people have a lot of luck and some a lot of misfortune. This feeds into life - how people approach things. I think there are people who are born optimists; I believe in nature not just nurture, but I don’t think it’s a static thing.

There have been debates recently around positive thinking.

Going for treatment for cancer, I was really sick, nauseated and sick. I know if I had a recurrence, I would want to be able to say no, I don’t want to go on with treatment. It’s important for people to talk about death and dying. The modern concept of a good death is like the ‘think positive’, like you can control everything - but you can’t. Things happen out of the blue.

Cancer wasn’t spoken about at all; it’s changed; it’s much easier to talk about it now.

I’ve had my two more recent episodes of what people may call ill health - episodes with osteoarthritis which led to hip replacements. This is speculation, but do people focus so much on cancer as it happens throughout adulthood? whereas people have a concept of age appropriate ill health...(like arthritis) Now you can hope that a hip replacement may last you up to 20 years or more.

The genetics of it: my grandmother died when I was three of breast cancer, and my sister had it when she was 38. There are different sorts, we have no idea what sort my grandmother had, and my sister and mine were different, but the geneticist suggests that our daughters from their mid 30s onwards, do have mammograms regularly.

When you have been in medicine, you can think of umpteen things that are worse.

Cancer, I was told it takes a year out of your life for the cancer and the treatment thereof, I would say that’s absolutely accurate. People’s approach to things differs; with radiotherapy, some see it as causing them lots of difficulties. For me it was a doddle – it’s just how your body reacts to things.

I would say I didn’t have any pain, the only thing was being sick. The thing that people fear, which causes the dread about it, is the fear of pain. In particular the bone secondaries create a tremendous lot of pain. People fear not being able to cope with it and unfortunately have seen relatives go through this and not have their pain controlled adequately. For some people it’s their own pain of losing their relatives, or seeing them in distress, that’s projected onto the patient. With the hospice movement, people ought not to be in pain. It can be controlled, unfortunately there aren’t enough people skilled enough in pain control, so it’s a legitimate fear. Certain cancers tend to have certain types of secondaries, early diagnosis is very important. Certain cancers, such as melanomas though, pretty much as soon as they are spotted, they have invaded.

The whole language is loaded. Its interesting in obituaries they talk of battles, sometimes I think its not what the patient might have felt, sometimes it’s the relatives’ battle with their own pain, what they’ve seen of suffering or preparing for loss.

(Lois: “I understand that for a lot of women, the loss of a breast, can be worse than the cancer itself”)

The alteration of body image, a physical removal of parts of your body, or with Chemo, the loss of hair. For myself I wondered how I would approach it, I had extremely long hair, it was part of my body image - so I prepared myself by having it cut short. It was a practical thing too, as to have great long strands of it falling out is highly inconvenient. As for the mastectomy business, I have never gone along with this increasing single focus on the breast in western society as sexual rather than also functional, as mammary organs. As it was, I didn’t have to have a mastectomy, I had a surgeon who was very concerned about the aesthetics thereof, but to me it didn’t matter at all. There is the aspect of your partner’s approach to it, you can’t divorce that from it. I didn’t find the hair loss difficult, and the short hairstyle I’ve kept afterwards, people said it took 10 years off me!

There are a whole lot of support networks if you wish to access them, I have never used them due to my own attitude to ill health, I don’t see it as a dominant thing in my life.

It’s much easier to have the cancer yourself, than to see someone else with it.

It’s interesting the part faith might play in peoples approach to it, I regard myself as an atheist. When I was being treated for cancer, people in the village would say, ‘I’ll pray for you’ and that’s a nice expression from some people, its giving a sort of gift in their terms.

With cancer, you see people alter in front of your eyes, weight loss and so on.

I had a useful tip from another patient, pins and needles in your feet - a side effect that you might keep after recovery. I have numbness in my toes, but how important is that? There are practical tips, but I know from the caring profession, you don’t tell everything as then people will feel it, whereas before perhaps they wouldn’t - a placebo effect, but the other way round.

I was very lucky being treated at Christies- who have the expertise. I had an oncologist, who was a fantastic researcher, but who had zero bedside manner. In terms of support there were two breast cancer nurses and they were fantastic. But I’m not backward in accessing what’s there, and would go out and look for it.

I was a classic case of being picked up by routine mammogram. When I got the letter for a recall - I knew and found it straight away.

Interview between Lois Blackburn and Alison Creed Feb 2010

Interview with Fraser Burton, Diabetes specialist

Diabetes: explain it in user-friendly language. That’s my job. The first bit of news isn’t so friendly. Diabetes is a chronic condition, it’ll be the thing that probably kills you. But there are many things you can do. You want to get rid of that label. Stop putting that label DIABETIC on your forehead. We put you right back into the middle of your peer group. We do that but we keep you safe.

What are the myths? People say that it’s a disease that stops you eating sugar. People say they ‘fall over’ with it – they actually go unconscious and then fall. There’s a myth that you can’t eat bananas or grapes, that’s a misnomer. People can eat anything they want in moderation. We say: eat a handful size. The main myth is that someone who has diabetes is insulin dependent.

In hospital, 10% of people will have diabetes. Most people here in Stockport will know someone who has diabetes. These people will get injections in later life. Nowadays we’re proactive with medicine. People with diabetes are one of the best looked-after groups in the country. We deal with people as a team of doctors, nurses, dieticians, podiatrists, and we bring in other specialists. Our job is to allay fears. Reassurance.

I have Type 1 Diabetes, was seven years old when I was diagnosed. I’ve done all the things you do when being a manic teenager. That’s what I tell the youngsters – you can still have your life. For the older generation, it’s explaining that they can still operate quite normally. Fit the diabetes around your lifestyle.

Type 2 Diabetes will be treated with lifestyle measures and tablets, a whole menagerie of tablets, and insulin injection too. People think its bad because it’s an injection. Think it’s worse than it is – associate it with hypoglycaemia and weight gain and sticking a shard of metal into wherever. They expect an injection to be something big and medical Hattie Jakes would use. But our needles are tiny, we don’t inject insulin into veins.

We have the grieving – a recognised circle of feeling. Anger, denial, acceptance. Most people accept it and get on with it. But denial (‘I’ll eat what I want’) and anger are part of the circle and will continually come round. If you have had things taken away from you – like chocolate – you will feel anger sooner or later.

For instance, if you are on insulin you can no longer drive certain vehicles. We negotiate medication with bus and taxi drivers. They fear, ‘My god I’m going to lose my job.’ Self-help groups are excellent for dealing with these fears, they have a massive input. There’s a lot of support – it’s actually very costly – 8% of the NHS budget goes on diabetes.

I can remember my first injection, I sat on the Sister’s knee and did it. Fantastic, look at me! I self-injected for a week. Then I reacted – ‘I don’t want to do it anymore!’ That was my circle of grief, coming round the first time.

We’re getting better at treating it, but it’s getting more prevalent. Firstly because we screen more aggressively. Secondly, we’re all getting fatter through lack of exercise. Diabetes isn’t just something that’s restricted to older people. The kids are getting adult onset diabetes earlier, because they’re not exercising.

The patients are not being blamed, but we are trying to put in place things to increase exercise and improve diet. Diabetes is an easy thing to deal with, but to encourage patients to go with your suggestions is easier said than done. For example, smoking and diabetes go hand in hand, smoking makes you many times worse and vulnerable. How do you stop the bad habits? People who are motivated will flip out of that at some point. Who finds it hard to cope with the restrictions? The people who don’t cope is everybody – it’s just the length of time that they opt out of the diabetic system that alters with the individual.

I know someone who was a bad lad – a lot of naughty habits - didn’t make any allowance at all for being diabetic. Complete denial. Now he’s got holes in his feet and he’s at risk of amputation – and he’s the most responsible patient you could meet.

When I was younger, I went travelling. I was in Yugoslavia at a railway station and I needed to inject. I went to the ticket office to ask if there was somewhere I could do it, but they didn’t understand me. I didn’t speak their language. Eventually, I injected on the platform. Looked up and there was a circle of gun muzzles around me. They arrested me – and I was saying ‘I’ve got to eat something in half an hour!’ It was three and a half hours before the interpreter came and I was in a bad way by then. Travelling was a risk, but it was calculated. Fit the diabetes around your lifestyle.

For the rest of your life you go around the circle – anger, denial, acceptance. For most of your life we hope you’ll stay in the acceptance stage. Encouragement, support, good pharmaceuticals – that’s what people need and what we try to provide.

Research is key – improvement in diet, lifestyle, drugs, machinery to test blood and so on. Insulin has only been extractable since 1922. Before that, if you had Type 1 Diabetes you were dead. We treat it as a whole team: doctor, nurse, dietician, physiotherapist, wheelchair exercise people… It’s not just in every part of the body, it’s in the head. It’s global. A big, big jigsaw of attitudes. You have to take it apart and put it back together again.

The best patients take on information bit by bit, they’re prepared to wait. Ongoing diseases go on. The information, the research, changes. You can’t expect to have this information immediately, you have to be patient. People who have the time and resources to learn about it deal best with diabetes. The patients need patience to listen. But the care staff need patience to listen to the patients!

When I was diabetic as a kid I got given five needles a week. My dad was an engineer and used to sharpen them for me. My mum would boil the syringes on Sunday. I can still smell the surgical spirit.

Fraser Burton was interviewed by Lois Blackburn and Philip Davenport

Interview with Sister Charlotte Moran. Stroke Ward, Stepping Hill Hospital

Strokes: people can become withdrawn, quiet, can be aggressive, can be tearful. People often say, you hear about strokes, but until it happens…

It’s hard to tell what a stroke will bring. You can have a mini-stroke that 24 hours later has been resolved. Other patients can be here 10 months. In the acute phase, people need to be looked after a lot. Then they move towards rehabilitation. It’s goal setting.

It’s about the denseness of the limbs – not being able to hold up your leg or arm, like a dead weight, with no power. But that can come back working with OTs and physios. Patients often talk to these people a lot, thinking about how they’re going to cope at home. Talking about the little things really. When they go home I always say goodbye. A shake of the hand, a kiss of the cheek. It’s the little things that make people tick.

Advice about strokes is improving: diet, lifestyle, smoking, therapy, advice about driving… The Stroke Association is good and the government have addressed it. Strokes have been a key area, like reducing waiting times. Awareness has improved through the media. So people know that smoking, high blood pressure, stressful job might have contributed to them having a stroke. Others just won’t believe it, whatever you tell them.

Do certain kinds of patients recover more easily from a stroke? Someone who is motivated has a reason to improve – a family, a holiday cruise booked, things to look forward to. Trust – trusting the staff – this really helps. We build a therapeutic relationships and trust is a big help with that. Humour – often people with a good sense of humour do well.

The basic care we do respectfully. A lot of trust is needed. What’s said (between nurse and patient) is in confidence. As a nurse, one of your codes is confidentiality. We are also advocates for people who perhaps can’t voice their own views. Often gestures can be used to communicate. Communication boards, picture boards, a basic YES/NO on picture cards. I’M HUNGRY. I’M IN PAIN. Someone might be able to smile. Communication takes a lot of time, but we’ve got to find a way. And then when it gets to the more complex things such as ‘I’d like some crumpets for my breakfast’, it’s difficult.

A typical stroke patient would be someone who lost movement in an arm, had swallow difficulty and some visual problems – bleeds or blockage can affect vision, creating one-eyed vision, tunnel or slit vision leading to a high risk of falling.

We are building therapeutic relationships, holistic – they’re not a number they’re a person. We orientate them to time and place, say hello at the start of the day and bye at the end. We have ex-patients who come in as volunteers and give out teas and cakes and sit with the patients, having a talk. Letting them know it’ll be OK.

Do I get stressed? You have to look after yourself, be aware of burnout. Space your shifts, take holidays, make sure you’re eating and sleeping properly. We do have time to debrief or reflect, that’s part of nurse training, but it is down to the individual.

I have the ability to switch on or off. During the car journey home I can switch off and become Charlotte, though not always. Sometimes I get upset. But if I cared in a strong way about every patient that died I’d be tearful all the time and couldn’t support anyone. My job is to support the patient and the family and I have to be there for staff as well. The staff know the door’s always open. Patients can be aggressive and upset the staff. I’m there for them, in the thick of it.

The staff work as a team, it’s a collective effort. Everyone needs to know their job and all bring something different. I might be very focussed and procedure-led, whereas someone else will be interested in having a chat about what you had for your tea.

I think you’re born with caring in you. Most of the women in my family went into caring: nursing, social work. I was caring for children from a young age. You don’t run out of caring, even when you’re exhausted and don’t know how you’re going to find the energy to drive home. You get up next day and come back with the same amount of caring. I’d say that’s true of most nurses.

I was born with it, always going to be a nurse. Went into it from Uni. Student Nurse: you get your tunic and your set of keys. But you learn how to actually be a nurse gradually. At first, some days are good, others not. You know if you’re made for this. Can you deal with the smell of a ward?

I listen out the whole time I’m here – it’s like a sixth sense listening to all the bays, making sure everything is alright. I just do it as part of the job. Some days you feel the responsibility. I’m paid to be accountable, my job is to make sure everything is to standard.

Patience: take a breath and count to ten. I do that regularly. Patience is not one of my qualities, I have to work on it. My family say my patience runs out at home – my mum and aunties are the same. But here I’m full of sympathy.

Sister Charlotte Moran, interviewed by Philip Davenport 7th August 2009

Half the river and all the way up to the sea

It's a commonplace to say you can be lonely in a crowd, but crowded hospitals incubate some particular strains of loneliness. This morning was spent sitting around the table in Ward 5 at Cherry Tree Hospital, with Nora, Dorothy, Leila, Helen and Hilda, trying to put a finger on what hospital loneliness is.

The very fact that we were gathered around a table was an issue. As Leila said, "To talk, you need a table to sit round." Chatting over cups of tea, taking turns with the conversation, is much easier with a table as meeting place. Unfortunately, many wards - especially some of the modern builds - have tiny day rooms and no large communal spaces. People can spend weeks sitting by their beds, in rows, cut off from close contact with one another.

The uncertainty of ill health is another factor. Not only might you be physically at a low ebb, medicated, and moved from ward to ward - but uncertainty as a continued state erodes confidence. As Dorothy said: "It's the general setup of it all, and then you don't know what you've got to face. Waiting to see what's going to happen. You're not as outgoing if you've got something on your mind, worry. This thing, it's happening to you, no one else but you. So you feel alone. Swimming half the river and all the way up to the sea."

Language is of course another problem. We are beseiged by misunderstanding. Whether we simply don't have the words, or the words have been taken away from us (by a stroke, medication, tiredness, dementia) it is a difficult thing to reach a happy meeting with these sounds we make. Just before I started the session, I spent a little time with a woman whose stroke had taken most of her speech, she spoke instead with smiles and hand pressure, and with her eyes. Leila's first language is not English and so a different set of problems appears. The word for loneliness in Polish is samonsc.

And what to do about loneliness? Helen: "Think of your close people. I would do that, after all they're the ones you really love."

Norma: "I approach people and ask them 'Would you like to talk?' People often say yes, they're pleased to know me. If you don't talk to em they think your too posh for them!"

Dorothy: "Every day is a little different - it can change sometimes for the good."

We discussed the photographs that people have by their beds. Norma again: "Bring a photograph of people you love - then you're near to them. You feel you're with them and they feel the same."

And what would a picture of loneliness be, I wondered?

Dorothy: "Empty!"

Business as unusual

Home is sometimes the littlest thing. Frank Powell has a small calm in the bustle of the ward. On his bedside table is a stack of CDs, a newspaper, a book, a carton of juice.

"Do a crossword, something like that. Or read. I reminisce many times, thinking of the past. Each thought is different."

Everybody deals with the experience of hospital in their own way. And the reasons for being in are as varied as the people.

"They cope with it as differently as themselves. The life in here, you need to ease it. Crosswords, reading, it's like ordinary isn't it? It's a bit annoying the noise here but not as bad as some. Just cope that's all. Pain? Grin and bear it. Good luck with the weather."

Being with Frank, I have a strong sense that he has created his own space, a bubble of concentration and inner life. But he doesn't especially stand out, it's not a big statement, quite the opposite.

"Got my CD. Newspaper, book. I fit in. When in Rome..."

I often wonder: how I would deal with all this? The pain, the strange space and strangers, my own body a stranger too.

"Make it close to your ordinary life. Try to make this unusual thing as close to your usual as possible."

War and peace

"I was five when the war broke. A little nipper. Remember the bombs coming over and the black curtains. Burning candles. And much later, I remember this man coming out of the dancehall. Shouting, 'The war's over!' and dancing in the street."

On Friday morning I sat with Norah, Helen, Dorothy, Freida, Mary and Angela in the rehab ward at Cherry Tree Hospital. I asked them about the big war they'd lived through - the 1939 war - if the struggle of simply getting through it had prepared them for the struggle back to health now?

"You've got to get on with it, or slip behind. It makes you harder. You look after yourself, you're not baby-ish like, crying all the time. You're hard, strong I should say. You don't notice at the time, but it comes later. You think about it, see it in your mind."

Did that experience shape your experience of hospital?

"Yes, it's part of life. It's hard but you've got to get on with it."

Did it prepare you for hospital?

"You're never ready for hospital. Not if you've been healthy before. You're not the same as you were. It's change. Suddenly you find yourself in hospital in terrible pain. Some people get upset, some feel it deeply, some accept it easier. Different temperaments. The ones who accept change, the ones who fight it."

And what would you say to someone in that position.

"It does pass in time, it does. IT DOES PASS."

overcome

Parkinson's disease is a chronic (persistent) neurological condition that affects around 120,000 people in the UK. The condition is named after Dr James Parkinson, who first identified the it in 1817.

Parkinson's disease affects the way the brain coordinates body movements, including walking, talking, and writing. NHS choices website
overcome

Parkinson’s (face it)
face it, get involved, take part
in sports: the adrenalin temporarily
overcomes the Parkinson’s
(face it)
don’t take the pills as gospel
at 1am in the morning
you can be flexible
get a consultant who knows
about Parkinson’s (the bad doctors
do damage)
when I got diagnosed
I dropped out into sulks
refused meals
then decided
this was a waste (face it)
have a bout with life
live to the full
with
an incurable disease.

Ray West
11 June 2009

Arthritis

"Arthritis is a term used to describe a number of painful conditions of the joints and bones. Two of the main types of arthritis are osteoarthritis and rheumatoid arthritis." NHS Choices website

‘arthritis:
keep it going, the only thing I
use a lot of oil, rub oil on
walk on it if it hurts
if it hurts keep it going
keep it warm
I believe in keeping the hips warm
that’s the way I’ve done
and I’ve shovelled snow…’

anon 2009