How to Break Bad News in a medical consultation: an introduction

By Elspeth Penny
22/09/2015

Breaking bad news is one of the hardest things a junior doctor, nurse, doctor, consultant or indeed any medical practitioner needs to do. On top of this, to do it well involves a great deal of skill and empathy, and can be very stressful for all involved, including the breaker of bad news. Thankfully there are some very useful guides, procedures and tips that can aid this process and allow the practitioner to do the most important thing of all in any medical consultation, which is to listen well.

I was invited in Spring 2015 to talk about How to Break Bad News at The Bristol Patient Safety Conference 2015 by the conference director Kate Dougherty. I’m a communications specialist and writer, and have been a consultant, simulated patient/role-player and facilitator in five different South West medical schools for over ten years and am planning a PhD in the area of Arts and Health. Kate was interested in my simulated patient work and thought that inviting me to talk would add a different perspective for the delegates. All the other speakers were or had been health professionals, including Dr Mike Durkin, National Director of Patient Safety NHS England, who gave the keynote address.

I decided to invite my colleague Professor David Radstone to join me. David is an eminent oncologist who teaches Diagnosing Death communication skills at the Peninsula Medical School, Exeter. As his simulated patient aid for a number of years, I have had many discussions with him about breaking bad news.

Kate told me about the delegates: “There will be a lot of nurses at different levels including patient safety leads, directors of nursing, people working in governance and risk management as well as junior doctors. So my first instinct would be to make it relevant to everyone and then provide some additional useful tips for junior docs if David feels their situation is unique.”

I set to writing a script for the talk, sometimes using David’s words from teaching sessions, which are often humorous. This is more or less a transcript of that script, with a few additions. For the next conference we spoke at together, the 4th Annual SAS Doctors’ Conference, Health Education South West 2015, we adopted a different approach. We workshopped scenarios, asking delegates to volunteer as the breakers of bad news, which allowed us to add insights in along the way. Delegates were typically highly level, experienced professionals trained overseas, who felt that they had gained useful insights on the topic and would like to know more. This account of our talk at The Patient Safety Conference, wilI, I hope be of use to all medics seeking an overview of the subject.

The Talk

David: I’m David. They chose me to do this because I’m near to death – the oldest member of the faculty. The students are young and for them death is probably a long way away. However, they need to be aware that there are certain expectations and they need to be prepared to deliver bad news. If they are unlucky, some seniors may ask them to tell the relatives, but the seniors ought to be doing this themselves. But it will be real to the students and fairly shortly.

Elspeth: Just to add, David is also a solicitor, on top of being a Consultant Oncologist – so he regularly prepares medico-legal reports for patients, and has a unique perspective as a consequence.

We’re going to go straight into a role-play, which is a slightly embellished word for word transcript script of a real student’s attempt to break bad news to me in role (here as Mrs Jones). Students are not usually as bad as this by the way:

Role-play 1:

Confident, verging on arrogant student, sits too close, gives an intense stare, which has a patronizing effect.

Student: So Mrs um (looking at notes), Mrs Jones, I realise this is going to be a shock for you, however I think it’s best to, how shall I put it? – break the news straight away, and say that I’m afraid the tests have come back to say you have breast cancer.

Mrs Jones: Oh…

Student: (not pausing) I realise this is a very sensitive issue for you Mrs Jones, looking at your mother’s history… your mother died of cancer I believe.

Mrs Jones: Yes… I….

Student: (not waiting) … but let me reassure you Mrs Jones, that treatments are always developing and whilst your mother’s illness and sad death will have made you sensitive to this diagnosis, we will do our utmost to give you the treatments we think best for you Mrs Jones. (Pause).

Mrs Jones: (Speechless)

Student: What are your emotions around this?

Mrs Jones: I don’t know what to say.

Elspeth: (to audience) Can anyone spot what went wrong there….?
Examples of things that went wrong.
• He didn’t allow sufficient response time
• Information was not given in manageable chunks and understanding was not checked
• It’s as though he has a manual in front of him ‘what are your emotions around this?’
• Assuming her response/preempting.

It’s easy to see mistakes when you’re watching, and to work out what they are once you’ve been working for a number of years in this field, but we all need to remember that it can be stressful for medical professionals to deliver bad news.

So why train in communication skills? As The Medical Protection Society say on their web-site, “Doctors who received training to improve their communication skills report a significantly lower rate of difficult interactions”, and there is a real need to communicate well for legal reasons. “Various communication interventions have been investigated. Communication training for health care professionals has been shown to have a significant effect on their communication skills”

There are other reasons too of course – as David once said to a group of students when we were working on a breaking bad news teaching session together, “There are people whose possibility of life is dependent on your ability to communicate.”

David: Our litigious culture however, has changed the way communications are considered and how they’re delivered. For example, managers might pressurize you into apologizing for what is essentially a misunderstanding rather than a mistake, or for a real mistake. Rightly so, you may say, but of course the fact is – if you apologise, you’re less likely to be sued.

Elspeth: Poor patient communication costs the UK NHS billions in inefficient working, poorer patient outcomes and unnecessary patient litigation, and is a significant contributing factor to NHS negligence liabilities – currently exceeding £21billion (nearly 20% of the UK health budget).

David: I had a recent complaint, which upset me, where I gave bad news to the patient, which he was relatively fine about at the time – no signs he took it badly. It was a family friend who wrote the letter of complaint. The family themselves were telling their Dad to “Man up” and after I had a phone call with them said they didn’t want to continue the complaint. It was a confusing situation, and in the end I can only think that the family friend just felt helpless, wanted to help and this is the way they saw fit.

It’s difficult to communicate bad news effectively, often for fear of escalating conflict. This can lead to frustration and dissatisfaction for the patient and may affect patient care and give rise to complaints.

Elspeth: We are going to start to look at:
1) why complaints arise in breaking bad news scenarios
2) techniques to handle communicating bad news effectively
3) and manage your own internal response.

Firstly. Why situations arise.
As a simulated patient and communications consultant, I see a lot of mistakes….

Sometimes there are cultural or language issues. I liked the way a Chinese student said to my character, “I’d love it if you reduced your smoking”: it was refreshingly personal, though when she said : “Your husband would too”, it suggested she had an insight into the dead, since my character’s husband had died.

There’s also the problem of over-doing communication. “I’m just going to have a chat with you and ask some questions, then I’ll have a chat with the Doctor and have a chat then I’ll come back to you and have another chat.”

Or over-sharing. “I know this is hard for you. My Mum died last year and the doctor was quite kind, but I cried for a week and felt terrible for months and then to top it all, I got a complaint about my communication skills when I delivered bad news! Can you believe it?”

In an obsetetric and gynaecological history taking session, a student asked me: “How much are you having sex”?
“A couple of times a week?” I said.
“So you’re giving it a good go?” he said.

In another, a student doctor said at the end of breaking bad news to a patient, that she had rheumatoid arthritis, said, “Fingers crossed, it won’t get too bad.”

David: Secondly. Let’s look at some techniques to handle communicating bad news effectively.
The Calgary Cambridge method, developed by Jonathan Silverman et al, is taught in 70% of UK medical schools. It gives us excellent microskills, nuts and bolts tools. Most of you in the room will know it, and you will have been taught how to go through the steps. For example the acronym ICE – Ideas, Concerns and Expectations, along with signposting and summaries. The summaries are a great place to put in open questions to get any missing information.

There is also the acronym SPIKES – a bit less general than Calgary Cambridge and used predominantly at the Peninsula Medical School for breaking bad news purposes. For example – in setting up the interview, make sure you sit down and involve significant others.

Elspeth: Interestingly, Spikes were invented by Rob Buckman, who is a comedian as well as being an oncologist.
The acronym is essentially this:
S – setting up the interview, including providing a quiet space
P – assessing the patient’s perception
I – obtaining the patient’s invitation (how much does the patient want to know?)
K – giving knowledge and information to the patient
E – addressing the patient’s emotions with empathetic responses
S – strategy and summary

I actually think comedy’s a good way to learn. We have made a few films, for a digital personalized learning app, Thumbpie, which is an online communications training tool that we’re developing. In one of the films I am playing the patient, and the doctor, played by another actor, Anita Parry, made some key mistakes:
• She didn’t know her patients name
• She was in a rush
• She was not prepared in regard to the clinical situation, records and patient
• She doesn’t give the information she needs to
• She has unconvincing empathy
• She doesn’t listen

Elspeth: Done with a lot of natural talent, these methods – Spikes, Calgary Cambridge and others, can be very effective, but for some people it doesn’t quite work. So what I’m interested in why or how you can go through the motions of the method but something still isn’t quite working. So what’s that element? Is it that some people don’t actually have much empathy? Or know how to generate empathy?
David: Yes, I think that’s true
Elspeth: They can’t actually do it.
David: Yes, although they try. And my prime example is a doctor of oncology in palliative care! You could see him struggling and going through the methods, like clockwork, like a robot, because you could actually see him thinking, “I’ve got to smile, I’ve got to hold the hand”.
Elspeth: The methods can help him though?
David: Well it was better than nothing.
He could actually go through that process and I think people felt that he was aristocratic, which he was, intellectual, which he was, and that this was just his rather aristocratic intellectual persona, and patients didn’t find it grating, it wasn’t hostile.
Elspeth: It was just part of him.
David: It was just part of him, yeah. Patients are kind. They realise it’s not an easy task.
So what else needs to be considered? There’s also a need to get behind these tools.

Elspeth: A very sad story – a mother who shared with me that she got the news that her newborn twin girls were dying told me that the wonderful medics gave her three things. Directness, clarity and humanity.
I think those words are very helpful for medics. Directness, clarity and humanity.
It’s also important to be able to see the dynamics of the people in the room. And to understand the feelings that patients arouse in medics and use this to help them. Barry Bub’s book “Communication Skills That Heal’ looks at patterns of lamentation, such as anger and other emotions. He says listen, listen and listen some more. He talks about recognising and responding to a lament. This involves acknowledging the sadness, naming the losses and allowing the person to move on with a new perspective. He defines healing as removing barriers to allow people to make their own steps forward. It’s a little like providing a wailing wall.

David: The third thing we want to look at is the important issue of health practitioners’ health and wellbeing. This is important because you cannot help your patients if you’re not at peace with yourself in this situation.

Elspeth: Another useful tool is The Drama Triangle, developed by Stephen Karpman with Gill Edwards’ insights, a psychological and social model of human interaction . This tool helps illuminate consultations, helps avoid both complaints and emotional exhaustion, and perhaps helps maintain professional detachment in a consultation. It’s well worth looking at. This is about roles in a consultation, and a triangle of dependency that can arise.
The medic can become the Rescuer to the patient who becomes the Victim: a power imbalance. But the medic can also want the approval of the patient, and it doesn’t take long – just half a second, and the Victim (patient) can change their mind about the Rescuer, take back their power and change role into Persecutor: “You nasty person, you took my power and abused me, now I’m going to abuse you.” This dynamic can certainly lead to the burnout of the medic, and dissatisfaction for both parties.

There’s also the reality of a tight schedule and other patients in the waiting room. Jon Vickery, who teaches clinical skills in Plymouth and Exeter, told me how he broke bad news to parents to tell them their child was dead, and the next patient complained about the fifteen minute extra wait and how much his thumb was hurting. It takes a degree of professionalism and maturity to be able to hold back what you’re really thinking in a situation like that.

David: That is our job. Dealing with difficult interactions with patients can be a significant cause of stress, yet the nature of all clinical jobs makes these encounters unavoidable.

SO:
1. Be honest
2. Don’t impose your personal view in the situation (or make assumptions)
3. Always do your best (and no regrets)

Elspeth: Andrew Tressider, a GP I also have worked with, talks of how important it is to protect yourself before going into consultations. There are many tools out there to help you and which one works for you is a personal choice.

And so to another role-play….

David: This one is about Duty of Candour.

Role Play 2

David: Are you feeling any better since we took the fluid off your lung Mrs Taylor?

Mrs Taylor: Yes, a lot better thanks.

David: That’s good news.

Mrs Taylor: But my husband insisted I ask you a question about it.

David: Of course.

Mrs Taylor: Why didn’t you pick up that I had fluid round my lung last week?

David: Good point. We did do an x-ray last week, but that x-ray report got missed. The fluid was clearly a significant cause of your breathlessness.

Mrs Taylor: So you made a mistake?

Elspeth: (to audience) – Do you think he should now apologize?

There is a resounding ‘Yes’ in the audience.

Elspeth: Kate, the organizer of the conference, has requested that we do a model role-play session. That’s puts the pressure on in front of an audience, but let’s give it a go… So David, would you like to give me some bad news…

David: This is a scenario, similar to one we often use at the Peninsula Medical School.

Role Play 3

This isn’t a complete account of the role-play, but David and I improvise a breaking bad news scenario, where David gives my character Jan the news that the life support machine that her husband is on needs to be switched off. David sensitively but directly tells Jan that her husband has had a brain stem bleed and that the tests overnight have shown that he is actually dead. They will need to switch the machine off.
Jan – in shock – doesn’t quite understand this, as her husband seems to be breathing and his heart is beating. “Can’t they do anything? Are they sure the tests are correct?” David tells her that two consultants have checked the results of the tests, that he’s very sorry but repeats the words, “Your husband is dead”, so that there is no ambiguity in what he’s saying. David skillfully brings the consultation to a close, ensuring that Jan’s sister is going to be contacted and that Jan has some time to herself with her husband. Typically David and I role-play Jan’s next appointment to talk about organ donation, but we don’t have time at the conference to do this.

The audience is very quiet after this role-play, and some of them have been moved to tears. It’s a moving scene, but illustrates well what needs to happen in such a scenario to ensure clarity and humanity in what is a very difficult consultation for the patient’s wife and also for the medic.

It is worth introducing the idea here of the medic as an actor. Professor McManus says that ‘Acting may ultimately be the salvation of doctors at risk of professional burn-out.
This subject needs greater exploration than is possible here, but it’s worth saying that it has long been recognized that there are many similarities between medicine and theatre. Having been a theatre director and actor, and having studied Stanislavski in the pursuit of discovering artistic ‘truth’, it is curious for me to be seeing his name recommended in medical journals.
For some medics, the idea that they might be acting when they are delivering a medical consultation is not a comfortable thought, nor might it be comfortable for their patients. It’s worth then considering that from the perspective of social psychology or anthropology, all people adopt different roles in different social situations in any case, and the best we can do as social beings is to learn to play the best role we can in any given situation.

David: To summarise then:
We’ve looked at how challenging it is to deliver bad news effectively.
1) why complaints arise,
2) techniques to handle communicating bad news effectively
3) and deal with the effects on you, as a giver of bad news.

Elspeth: By learning the communication skills needed using the variety of methods we’ve briefly looked at here, the breaker of bad news can hopefully create the most empathetic and nurturing situation for patient as possible, and then be ready to move on to the next patient.

References:

Annual Bristol Patient Safety Conference 2015 http://www.bristolpatientsafety.com

Wells T, Falk S, Dieppe P. The Patients’ written word: a simple communication aid. Patient Education and Counseling Elsevier, July 2003

Baile WF, Kudelka AP et al Communication skills training in oncology

Cancer 1999;86:887-97. Fallowfield L, Jenkins V, et al Efficacy of a Cancer Research UK communications skills training model for oncologists: a randomized controlled trial. Lancet 2002;359:650-6

Silverman J, Kurtx S, Draper J. Skills for Communicating with Patients 1 Feb 1998

Kurtx S, Silverman J. Teaching and Learning Communication Skills in Medicine, Second Edition

Gott, M. Teaching and Learning Communication Skills in Medicine 1 Jan 1960

A Game Free Life, Stephen B Karpmann M.D http://www.KarpmanDramaTriangle.com
McManus IC, Vincent CA, Thom S, Kidd J. Teaching communication skills to clinical students. BMJ 1993;306

Also https://www.ucl.ac.uk/medical…/1994-Lancet-Editorial-DeptOfTheatrical…

Benedetti J. Stanilavski: an introduction. London: Methuen, 1989.

Berne E: Games People Play: The Psychology of Human Relationships, 2010
by Eric Berne

Thank you to Dr Malcolm Rigler for the references.

Please contact me if you’d like a PDF of this article with marked footnotes.

Summer Cave Poems with Class 4

Spring 2015, I got the go-ahead to organise a caving trip for a class of year 5 and 6 children, followed by a day workshop – and this workshop was to be something creative, which the children would benefit from. Blagdon school chose to have a day of poetry writing for the class.

The trip was set for June 8th. A coach relayed children to the caves: there were four expeditions that day at Burrington Combe.

We had to climb into overalls, wear hard hats and belts, and have our safety talk.

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Walking to Goatchurch Cavern, we heard stories along the way from Rachel and Andy Sparrow and Andy Chamberlain, of skulls found in Aveline’s Hole, geology, geography, pre-history and the Victorian visitors who paid at the entrance and went caving with heavy wet through old hemp rope, in long skirts and cloth caps.

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A couple of feet at a time, we went down the giant staircase, down keyhole shaped passages and shallow descending sandy slopes, in the ambient temperature which remains the same in summer and winter. We saw cave spiders and lesser horse-shoe bats. 2015 became irrelevant – time was many layered and it was hard to keep sense of minutes going by.

Andy Chamberlain cracked jokes all the way around the cave and told us extraordinary geological facts, so nobody thought of even getting scared.

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I collected words along the way that the instructors and the children came up with, and wrote them all down in the dark on a dirty scrap of paper:

Down the badger pit. Bead of calcite. Brightening the cave with all their shininess. Limestone, slightly acidic water. A fractal waterfall. Boney vegetable smell. It smells like the cupboard in my bedroom. Volcanic ash, like peanut butter. The Drunkard’s alley. Scrunched. Fraught.

When I got home I put the words down on a giant piece of card.

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In the workshop we cut up the words, wrote some more and cut those up too.

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We hung words on giant stalactite shaped pieces of paper…

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… and played with words, phrases and points of view.

The children wrote over thirty poems, many with illustrations. They worked hard, shared ideas and concentrated. I tried to help each child individually, though could have done with another day, but the children finished off their poems in class over the following week. Some of the children came up to me, all buzzing, in the playground to tell me that they had been working on their poems.

The main thing I liked in the workshop and in the poems themselves is the detail that the children observed, felt and heard on their caving trip – it comes out in their choice of words. I also liked how clear it was that the experience had ignited their imaginations and how they were able to convey their own personal experiences, including a fair bit of fear in some cases. It’s great that the poems were written from different points of view – for example from the point of view of a bat, a girl, a storyteller and a cave…

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There was an acrostic poem…

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and some great pictures:

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The poems will go in the Time Capsule which I’ll be doing next term. The capsule will be filled up with letters and other goodies, ready to be placed in the school attic and to be opened in 25 years time.

Thank you to Stuart Bardsley at Discovering Blackdown Project for funding and supporting this project, to the excellent caving instructors and to the teachers and staff at Blagdon who made all this possible.

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🙂 “Thanks ever so much for arranging everything for this trip Elspeth. I know the children have had a great time working on this during this term.” Anne Harrison  at Blagdon school.

Letter to the Future exhibition in Blagdon 9th May 2015

Now, we are lucky to find messages from our ancestors 10,000 years ago in the shape of scratches on cave walls, or carvings on bones. I asked Scouts, Cubs, Guides, Rainbows, Beavers and Brownies what they would like to leave for someone in the future. In our workshops we explored this by making a letter to someone in the future. We used different coloured home-made Mendip soil inks, plus a range of others such as beetroot, blackberry and elderberry ink. The children used feathers or sticks as well as pens, staples, even fuzzy felt. They made letters in pictures or in words about where and how they live, and what they can see, smell or eat. Sometimes they used images and ideas of animals or plants in prehistory. This is no rules letter writing: these letters are about having fun, being creative as well as engaging with Blackdown and its history. The project has been funded by Discovering Blackdown Project. For more about Elspeth’s letter writing project see: https://2buproductions.org/letterwriting

The letters hang on washing lines: pegged up works of art. A small girl charges in, attracted by the colours. She brushes her hands through silver ribbon hanging from a kite letter. She rushes out, then back in again several times. Her footsteps fall on rectangles of sunlight coming through the windows.

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Jane who runs Fanny’s café in Blagdon helps me put up the exhibition, draping  string and the large branch she places against the bar with fairy lights.

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Once we’re done, I sit in the corner and wait to see how people react.

Four boys search for the letter they wrote in the workshop. A mother points out to her daughter that she’s spotted her letter, and giggles at the words in it. A boy tells his brother that the letter he did is rubbish. It’s painted with local mud and has something about it, I tell the boy, it gives a lot of information to the people of the future, that’s why I laminated it and put it on display.

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One of the Cub leaders tells me that the children talked for weeks after the workshop I did with them. Though there’s no time for any thorough research evaluation here, this kind of verbal, even anecdotal feedback is welcome. It’s important to know that there are benefits.

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A pair of ladies giggle as they read things such as ‘Broccoli was never meant to have been eaten’ on a letter from one of the Cubs.

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A member of the village history society takes a long time over reading the words and looking at the images. She writes in the visitor’s book ‘Selfies and broccoli – brilliant. Really enjoyed looking at your exhibition’.

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‘It’s really quite moving,’ says a retired man who I’ve called in from the pavement, walking by. He loves children’s art having worked in a children’s hospital most of his life as a nurse, but hadn’t felt able to come. He likes the inks chosen from Mendip soil. He also likes a glittery splodge one child has made, and the mammoth.

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He visits again a little later with a bag full of jars of different coloured oche pigments, from golden to browny reds and one of the pictures he’s painting with them. ‘You can grind the ochre in a pestle and mortar, then sieve it, and grind it once more. That makes a very fine pigment.’

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A couple of Police Community Support Officers titter.

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One Cub, spontaneously tells me, ‘I loved doing all this.’ It reminds me how much the children enjoyed the process on those cold winter evenings.

A bunch of girls find it a good place to chat, amidst the letters:

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‘The rooms smell lovely – did the children use lavender?’ asks a parent. I say on one of the workshop tables there were a few bottles of essential oils, a few scents, lavender and eucalypus to dab on. That’s what you can do with a real letter.

Next door, the film that year 5 and 6 made for Decoy Day is on a loop, and a lots of people are coming in to watch it. Some of them stay for three sittings. In between or at the end, they eat war time cakes – a fruit cake, or honey cake with a cup of tea, served by the school Class 4 teacher. Then they wonder into the room of letters.

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‘They have clearly been able to be free whilst creating these – they’re really special aren’t they?’ one mother says to me. Another writes in the visitors book, ‘Loved the letters and the film – what wonderful creative enterprises! Fantastic that the kids get to express their creativity and individuality. The inks are wonderful.’

I tell one spectator that I was really interested in what the children picked up from the information and ideas I shared with them. I showed a bundle of local maps to the Guides, amidst a lot of images of Mendips animals and plants twelve thousand years ago as well as now. One girl picked out a little bit of one of the maps and drew a field map. Others drew deer, hare and owls.

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Some images had real plants on them, or mushrooms:

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Others had stuck on fuzzy felt, playing cards or glitter.

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There were even letters on a stone I’d brought to pin down paper.IMG_0665

They have really thought about the words, taken care to think what the people of the future might like to hear, and then chosen inks, writing slowly with feathers and wooden sticks, and got on with communicating in the best way they can to the future.

‘What’s going to happen to these letters?’ a few people ask. ‘Something should be done with them, they should actually be given to the future.’ A dad says he can find a box for them, he’ll have a look and perhaps they could be buried in the village? By the end of the day, I’ve found a little money to make this happen, if the children will let me bury them…. and they can have them back in 25 years time.

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More comments from the visitors book:

‘What a Joy’.

‘In discussion with one of the parents the project has really made the children of Blagdon think ‘outside the box’ and it has inspired them to talk about all their involvement and matters discussed.’

‘Lovely imagination – brought to life. I love the idea that ‘anything goes’.

So – thank you to all the children – Scouts, Guides, Brownies, Cubs, Beavers, Rainbows for all your work, to all the group leaders, Jane Adams for helping me put the exhibition together, Ruth Coleman for sharing the exhibition, and Stuart Bardsley at Discovering Blackdown Project for funding the workshops and exhibition http://www.discoveringblackdown.org.uk and all the people who came to see it.

Shelf Life: what’s in a bookshop?

All those put your hands up if you bought books online in the last week.

Now all those put your hands up who bought books in a bookshop.

Let’s go back in time. 1978 – the North East, and I was ten. The picture you may have in your head now if you’re a Southerner may be of grim, cold, windy tragic scenes: a second cousin of mine once said he felt sorry for me because I didn’t come from London. Well, it really wasn’t too painful to be brought up there, that is when they let me out of the broom cupboard. The elders of my tribe taught me how to create warmth, and what made it even less painful was that I was brought up in a bookshop.

Back to 2014. I am witnessing this show of hands in an audience listening to a panel – ‘What Future for Words’ – introduced by Vikki Heywood, Chair of the Warwick Commission on the Future of Cultural Value. I put my hand up for both.

‘Slightly more people in the room’, Vikki says, put their hands up for the bookshop one. ‘Perhaps’, she adds.

To put this in context, this is Cheltenham Literature Festival, where people have chosen to attend in order to explore words and books, so it doesn’t represent a random cross-section of the British public.

I am reminded that one of my own children proudly told his head teacher last week that he wouldn’t be buying the book at the school book sale even though he desperately wanted it, because he could get it cheaper online. Ouch.

The question that these hands in the air are making me ask is, what exactly is it that we risk losing if bookshops or hard copies of books disappear?

Newcastle in the 80’s. It was a survival strategy of mine to spend as much time as possible in the bookshop. I’d never have seen my real live mum in the flesh, or got fed, if I hadn’t gone there.

Home did not have any in-date food in the fridge and was sometimes not very tidy and was quite often filled with pale skinned spotty goths and dope smoking teenagers.

I liked them, they taught me how to smoke, and they seemed to think I wasn’t too irritating but I knew even then that they were into a little bit too grown up kind of stuff for me to be hanging out with them all the time.

At the shop, reference books became my grandparents, poetry books became my well-stroked pets, novels my big sisters, art books gave me my special treats and cookery books read me bedtime stories. It was warm (the heating was on, unlike at home) and it smelt of Italian coffee.

Sometimes the bookshop spilt into home life. My siblings and I had a joke that when Mum wanted to say something, like ‘Time you knew about sex’… she’d just casually leave ‘the latest’ book hanging out on the kitchen table at home for us to find.

The Bookhouse was an independent bookshop with a coffee bar. We thought we were terribly original and that it was before anyone else in the UK had thought of that combination, which might be true. The Bookhouse was my very own mother’s shop. It was around that time I copied my brothers and sister and started to call her Iris: ‘I don’t want to be called Mum when I’m 77 years old,’ she said.

Whilst I was attending my father’s wedding and getting to know a new bunch of step siblings, and – more importantly – discovering my sister’s Lou Reed and Bowie records (which she had stolen from our eldest brother), Iris was busy. Somewhere or other she was persuading a bank to give her a loan, choosing the location (13 Ridley Place… spooky since my dad had married Mrs Ridley), shelving out two floors of the shell of the shop, then ordering the books.

Her dad – a Geordie grocer – sat on the sidelines, as he died slowly of a smoking related lung disease, warning her gloomily that she probably wouldn’t succeed. She was a single mum – not that we used that phrase – and a feminist, and we knew that his words just fuelled her resolve.

When the first book orders were delivered, a team of us slid knives into the tape holding the boxes together and opened them up one by one. Oh for that unmistakable inviting fragrance of a box of brand new books. The silky smoothness of a quality hard-back cover. The sensation and thrill of sliding each volume out, carefully so as not to damage it, holding each one as though it were a new-born baby, checking it for eyes, ears, nose, mouth and then working out which section to put it in.

They might well have been called worlds: worlds of ideas, for that’s what each one was, and the whole lot together on the shelves was a universe, and I greedily wanted to read them all.

My daily routine, once shop life started, was to walk there after school, or get on the Newcastle Metro, once that was installed, and get out at Haymarket. When I arrived in my creased school uniform, with half my school dinner down my front and my homework in my bag, Iris would suggest I got myself a hot chocolate in the coffee bar and do my homework there.

Then she’d open the till and give me a fiver to get garlic chicken from M&S, maybe also enough for my brothers if they were around, because she’d always stay late and I’d be being helpful if I could put it in the oven, and it would be extra brilliant if I’d walk the dog.

She had to switch off the coffee machines in the coffee bar, and count the takings at the end of the day and tot them all up each week (takings ranged widely and often determined our family mood for the week), and sort the stock cards, when we had that system.

If I resisted buying joss sticks or retro hats from the Handyside Arcade with some of the money, I might manage to get chocolate éclairs or a lemon tart for pudding.

Working at The Bookhouse on Saturdays and holidays from the age of ten was cool, and getting paid in Collins English dictionaries or play scripts or postcards, even cooler. Sometimes I made chocolate brownies or dodgy Florentines to sell in the coffee bar. Occasionally they were good enough to sell.

Iris even let me select books from the reps: ‘Just get any that you think look interesting’, she’d say. How exciting was that? I got to order any book I felt like, as well as choosing what we’d have for supper, aged 12!

Spotting shop-lifters was an essential part of working on the till, and I developed a nasty glare for anyone I thought might EVEN BE THINKING ABOUT IT. This studying also gave me quite good lessons – I am ashamed to say – for my own subsequent (brief, I hasten to add) phase of shop-lifting nasty eighties earrings (from chain stores, never independents… that was my questionable moral code) which I didn’t need or even want that much, along with a very naughty friend.

Sorry shops, I would now pay you back if I thought you still existed. Guilt. Shame.

There was a host of staff in the shop – far too many to be economical – including Gran and our rocking horse in the children’s section (the horse got the highest wages of any of us) and Aunty Ruth and sometimes my friend Didi. Beth Kessler, Mum’s choral singing friend, and Elizabeth Hammill, who went on to set up Seven Stories, the children’s book centre in Newcastle, were also there from the beginning.

Neil Astley had free rein in the poetry section, which was tucked up on the shelved section on the left side under the stairs. Neil could often be spotted at our house drinking wine, planning and discussing with my mother how to bring to the attention of the reader the slim volumes (obscure volumes as I saw them at the time), but which in fact comprised a huge collection of modern international poetry which deserved an audience. This was in the years that he was setting up Bloodaxe Books, cutting and pasting cover design in the kitchen of his flat.

Sometimes there were two people working in the coffee bar, down the spiral staircase, and also Mick, the guitarist on Saturdays. We had visitors too – illustrators like Michael Foreman and Colin McNaughton drawing wicked monster and witch pictures for kids (I still have some).

Royal Shakespeare actors dropped in to recite works such as Beowulf – in between sips of mulled wine – on winter evenings. There was a bunch of us, (including – most exciting for me – the boy I had the hots for) who often visited after we’d been to the People’s Youth Theatre, on a Saturday morning.

Reams of Newcastle Literary Festival writers and opera singers came back to our house for parties. At least that’s how I remember it. God knows how my mother did it all. She was even on Woman’s Hour once for winning Young Firm of the Year, awarded by the Newcastle Advertiser. Agony to listen to your mum talk on the radio when you’re 16, but in retrospect, that’s not a bad accolade is it? Especially for running a shop, which never really made quite enough money.

As A.L. Kennedy says at Cheltenham: “If money becomes the sole purpose for words, it becomes bit depressing”. Iris was not, you can fairly say, into selling words for the sole purpose of making money.

Our Bookhouse got sold ten years later for not very much, as an ongoing concern, which really is an unfortunate phrase. It didn’t survive that chain – Waterstones – arriving in town and setting itself up in Northumberland Street, where there must have been an astronomical rent, but, as we’d put it, ‘Everybody is always walking past, so they just drop in’, unlike the Bookhouse which suffered from just-off-the-high-street syndrome.

I truly hoped that some of the books that were still hanging out on the shelves unsold were not ones that I had ordered, randomly, in those early days, but I suspect quite a lot of them were.

For a long time, I would not go into a Waterstones anywhere, out of loyalty to our shop. Iris didn’t ever ask me to have this loyalty. I even sent unfair sour glares (learned from the shoplifting spying) to the staff in there, especially if they’d opportunely side-stepped from our shop. It’s odd to me that we are all now hoping that the chain won’t go bust. Waterstones is now one of the rare surviving bookshops.

The longest I’ve spent in a bookshop for years is at Cheltenham Literary Festival, and that isn’t even a bookshop, it’s a marquee. It’s filled with the books by the writers giving talks, the public who are listening to those talks, and the writers signing the books, which they’re giving their talks about. What a party again! I have indescribable urges to join in, but I don’t quite know how to not be part of the team organizing the event and whipping the writers off for a meal or a drink afterwards.

What happened to my own regular bookshop browsing habit? Whilst having those delights called very young kids, who have tendencies to rip out pages from books then vomit all over what is remaining, I tried to make sure I was a good book Mum. I gathered enough books to feed their hungry souls, read to them as soon as they could sit up (in my womb) and then just left them to rip out pages and vomit as much as they liked.

We were living in deep rural Devon in a seventeenth century kind of way, where it was hard to get a proper radio signal, and the ghosts spoke more loudly than my husband, and books made a contribution to keep me in modernish times. I hardly noticed bookshops then, because I hardly noticed the outside world at all in that time, but when I did sit up and notice, all the bookshops had started to close. The one in our nearest town – Tiverton – closed suddenly, before I’d even been in it. The person who pointed it out to me, was Iris.

Now I’m a bit more normal, living a bit less of a sheltered existence. I actually have neighbours, and there are cities quite nearby and in those cities there are bookshops though some of them only have remainders, the cheap books that publishers want to sell off. If I have time, I will give myself fifteen minutes to check over the titles and buy something. I still have some getting back in the groove to do. After all there is so much to know and follow nowadays if you’re interested in words, ideas and communication. How can you be expert of digital media, of film, music and art and dance and children and school and housework and earning money and looking presentable and try to eat the food in the fridge in time, then read regular papers and novels too?

There have been a few conferences which work has taken me to… such as Sheffield Documentary Festival, Cinekid in Amsterdam, Kidscreen in New York, Vision in Bristol. Fast paced adrenalin vehicles for pitching, selling and flirting. The focus is often multi platform: words and ideas across media. Telling stories over the internet, TV and on mobile devices.

This is my first visit to Cheltenham Literary Festival and to a literary festival at all since 1986. I am gate-crashing Iris and Aunty Ruth’s annual expedition, and they’ve been really kind taking me out for lunches. The festival is gentle, thoughtful, relaxed. It’s reminded me of the importance to put away your mobile phone and forget about text messages, slow your pace and read words in print, and then let the thoughts wonder.

At the ‘What Future for Words’? debate which I attend, the debate has the feeling of scratching the surface of something enormous. I come home wanting to know more about all the panelists: Amereh Saleh, a spoken word artist who has a strong online presence; the shrewd, confident writer A. L. Kennedy, Rebecca Levene who is a cross-platform writer and the publisher Gail Rebuck. I find them all on Twitter, and I also look up The Warwick Commission on the Future of Cultural Value.

The question of what exactly is it that we risk losing if bookshops or even books disappear has taken quite a bit of answering, and I haven’t covered all the points by any means. The bookshop I was brought up in might have parented me, but it didn’t change my nappies and it didn’t give me hugs. However, the people in and around the bookshop, including the customers, did give me hugs, or at least warmth. Luckily by the time I was 10 I was out of nappies, so they didn’t have to do that too.

For me then, it’s the people in a bookshop that makes a bookshop. It the talking about a book, enthusing, knowing about the book you’re looking for, sharing, giving advice, suggesting, looking together for an author or a title. Online does do that, but it’s not quite the same when there isn’t another human being in front of you, is it? It’s a need I don’t think I am alone in having…. I need that sharing, and that energy. The same energy and need attracts us to live comedy and live music and brilliant theatre, doesn’t it? Otherwise we’d all just sit at home in front of our screens right?

The Bookhouse was a place where a bunch of Northern people could explore a little bit about who they were, for a decade. It was a place where artists, even Southern artists visited and shared their ware. It was a place for creative folk or just any folk to get a book and have a coffee, have a giggle or feel sad, just something human…. and then get on with the rest of their lives. For me, as a teenage bookseller, there was the tantalizing mystery and excitement behind the question of which book would a customer buy? Was it for them or was it a present? It’s the customer, and the future reader that eventually gives a book its breath.

Iris doesn’t sell books anymore, but my sister and I reckon she singlehandedly props up bookshops all over England with the amount she buys, and it’s great visiting her house for a weekend: each time there’s a month or two of fascinating material to get through.

My own children feast on library books, spend their earnings or savings on books and read anything else they can get their hands on in their spare time… I have to limit it in order to get a conversation out of them, and it has to be juggled with playing Terraria and Minecraft.

It feels important to Tweet about this after the festival. I want to say I was brought up in a bookshop, but Twitter doesn’t let me have enough words to say why this has any relevance at all. Then it crosses my mind (ok, I admit, I am a bit behind everyone else) that I can tweet a link to a blog post. Brilliant. This is what I will do. I spot one of the battered dictionaries that I now prop my laptop on so that I don’t get neck ache when typing – ‘The Collins Dictionary of the English Language’. I pull it out, and find on the first page an inscription in it in spangly young writing.

“Elspeth Penny.

In payment for working in the Bookhouse.”

You could say – couldn’t you – that my words literally came from the Bookhouse and are still literally propped up by the Bookhouse.

The morning that we leave, we finish off an enormous breakfast at the hotel. It’s Mum’s – oops, I mean Iris’s 77th birthday.

What do Ruth and I give her?

Books.

PT (Postscript Tweet)…

Elspeth Penny ‪@elspethpenny‬

Love books, love digital both. Thanks ‘What future for words?’ panel ‪#cheltlitfest ‪@GailRebuck ‪@Writerer, ‪@Voiceofthepoets ‪@RebeccaLevene

Amereh Saleh @Voiceofthepoets has retweeted it! Yay! I now feel a little bit part of it all again.

Any ideas or thoughts this article has prompted in you? I’d love to know.

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