Yup, it's all happening over here in the flatlands.
Please note our new phone number, which has finally arrived. It is 01954 202158,
and accompanies our new office address:

The Barn

1 Corbett Street

Cottenham

Cambridgeshire CB24 8QX

For the moment, our fax number remains unchanged.

Amis all the excitement, two new stories from a Pilgrim Projects/Patient Voices
digital storytelling workshop, 'Look both ways' and 'Recovery' have been
released. Both are stories told by nursing professionals.

Tony

Another story, 'Where would I be without Shpresa?', around refugee, migrant and
immigrant experiences from the 'Communities of Health' project with Newham PCT
has been released.

Tony

17th September 2009 - Another story, 'Breaking Nurse in charge', in a series
facilitated for the University of Nottingham which allows newly-qualified mental
health nurses to reflect upon and share their experiences, is released.

Tony

Nine new stories created in a Patient Voices workshop sponsored by Sheffield
City Council are released. These stories, told by people who use mental health
services and those who care for them, are intended to illuminate the experiences
of people affected by a range of serious mental health conditions including
psychosis, depression, anxiety and autism, highlighting the needs of those who
suffer from such conditions, and of those who care for them.

Tony

Issue 5 of the Patient Voices newsletter is now available from the website. Any
comments gratefully received!

Tony

6th September 2009 - Another story, 'Breaking bad news: Is there a right way?',
in a series facilitated for the University of Nottingham which allows
newly-qualified mental health nurses to reflect upon and share their
experiences, is released.

Tony

Another story, 'Maybe it just isn't the right job for you?', in the series
facilitated for the University of Nottingham which allowed newly-qualified
mental health nurses to reflect upon and share their experiences, is released.

Tony

The final story, 'Blink once for yes', from the University of Liverpool 'Get
Involved 4 the Future' project is released.

Tony

Two new stories, 'Looking for my mum' and 'From darkness into light: new worlds'
are released.

Tony

Hi Gang
         You did have a busy weekend quite a bit to read through sounds
good to me ! wish i was there .

                                                                Brian
________________________________________________________________________
AOL Email goes Mobile! You can now read your AOL Emails whilst on the
move. Sign up for a free AOL Email account with unlimited storage today.

Hello,

This email message is a notification to let you know that
a file has been uploaded to the Files area of the patientvoices
group.

   File        : /full humanising healthcare July 2009.doc
   Uploaded by : drjotait <jotait1@...>
   Description : Notes from July 4th Reunion of humanising healthcare

You can access this file at the URL:
http://groups.yahoo.com/group/patientvoices/files/full%20humanising%20healthcare\
%20July%202009.doc

To learn more about file sharing for your group, please visit:
http://help.yahoo.com/l/us/yahoo/groups/original/general.htmlfiles

Regards,

drjotait <jotait1@...>

Four new stories, 'My journey with David', 'Soulmate', 'The real Malcolm' and 'A
bed for Betty', in a series around experiences of end of life care created to
accompany the National Audit Office's End of Life Care Conference held on 17
June 2009 are released.

Tony

Another story from the University of Liverpool Get fit 4 the future series is
released:

Alphonsus
=========
The threat of deportation hangs over many refugees and asylum seekers. Martin
and many others fight to save Alphonsus and enable him to live a better life
than the one he had in Biafra.

All best wishes

Tony

I will be out of the office until the 15th June, and Pip will be away until the
30th June.

We may have some email/phone access during this period, but cannot guarantee it.

All best wishes

Tony and Pip

I've just released three new stories from newly-qualified nurses from the
University of Nottingham about their experiences of the initial
post-qualification period. They're listed below.

Tony

Are we there yet?
=================
When Rachel qualifies she is idealistic, determined to help and fix her young
patient. When circumstances mean that she cannot help her client reach the end
of the journey, her resulting uncertainty and self-questioning are helped by the
support and understanding of her professional peer group.

What if the relationship is not enough?
=======================================
The human relationship between mental health nurse and client is one of the most
powerful tools available to a mental health nurse. But when Gemma's
carefully-nurtured professional relationship with a client breaks down, what
other avenues are open to her?

Who is an expert?
=================
As an enthusiastic, committed, newly-qualified nurse, Susanna values and
acknowledges her patients' own expertise in their conditions and care, but can
she maintain her belief when the system seems to feel otherwise?

Six new stories from the 'Communities of Health' project with Newham PCT have
been released. These are:

Hope never dies
===============
As asylum seekers from Kosovo with little English, Eda and her mother face many
difficulties as they try to build a life in London. Trauma and stress threaten
to overwhelm them but eventually Eda learns, with the help of Shpresa and other
friends, that what doesn't kill you makes you stronger, and hope can overcome
most things.

A light at the end of the tunnel
================================
Evis is ill and in hospital, faced with a life-threatening condition. She
panics.... and recalls earlier traumas when she was refused asylum and had no
money to live. With the help of community organisations, she is eventually able
to reach the light at the end of the tunnel, and now helps others who were once
like she was.

A knock on the door
===================
When Lindita arrives in a country where the highest barriers to her health and
welfare are those of language and culture, she suffers from physical and
emotional problems until an Albanian voluntary organisation opens a door in the
walls that hold her back.

How I turned my life around
===========================
When Flora leaves her home and family in Albania hoping for a better life in
England, she is unprepared for the isolation and difficulty of settling in a new
land... until someone tells her about Shpresa.

Never give up
=============
Flutura escapes the horror of war in Albania only to face the harsh reality of
trying to make a new life in a strange country. Sickness and depression
eventually give way to joy and belonging to a new community.

A journey that saved my life
============================
Entela is excited when her husband invites her to join him in the UK; she cannot
begin to imagine the perilous journey that awaits her before she can begin a new
life in England.

The stories can be seen at:
http://www.patientvoices.org.uk/newham.htm

Tony

Welcome Carole

It's great to have you on board and good to hear that you continue to watch the
stories.

We know that your Magic Light Switches story always goes down very well in
presentations and people, including clinicians, are often amazed to discover
that the ravages of rheumatoid arthritis can leave people unable to switch on
the light.

We'd love to hear more about your own experience of making a story - what it's
meant in your life - and of using your own and other stories...

All good wishes

pip

>
>
> Hi Everyone
>
> Just wanted to introduce myself, I am new to the group (thanks to Brian
> for directing me here).
>
> I am Carole Carter and I live in Gods own County of Yorkshire! I wrote
> my story last year ("Magic Light switches"), as part of the Arthur and
> Co Stories. I just think that the stories are such a powerful way of
> communicating so much in a short time. I've yet to watch a story without
> being moved by it.
>
> I am to happy to be part of the group.
>
> Bye for now
>
> Carole  [:)]
>

Hi Everyone

Just wanted to introduce myself, I am new to the group (thanks to Brian for directing me here).

I am Carole Carter and I live in Gods own County of Yorkshire! I wrote my story last year ("Magic Light switches"), as part of the Arthur and Co Stories. I just think that the stories are such a powerful way of communicating so much in a short time. I've yet to watch a story without being moved by it.

I am to happy to be part of the group.

Bye for now

Carole

Four stories, 'Darkness', 'My friend Autopilot', 'One woman's life' and 'You
only get one mum', from a Patient Voices worshop run for the "Get Involved 4 the
Future" project are released. Get Involved 4 the Future is being developed by
the University of Liverpool School of Health Sciences in partnership with the
Forum of Carers and Users of Services and with support from the University of
Liverpool Centre for Excellence in Teaching and Learning.

The stories can be seen at:

http://www.patientvoices.org.uk/ul.htm

Tony

-Greetings

I've emailed Paul to see whether he might be able to get hold of a copy for
us.... and also suggested that he join the discussion group!

While it's nice to be ahead of the times, it is also good, as Steph says, not to
be considered a loony lefty anymore when we talk about stories :-)

It's also interesting how the post-modern stuff comes out (so that's what that
was!!)

There is a lesson to us all to direct people to specific stories - and we might
also looking at changing the order of stories on the junior doctors' page, so
that, if people are only looking at one story, it will be a good one...

As for persuading people that a digital story is more powerful than a long,
boring interview, well, it may be a matter of whatever floats your boat... and
judicious use of appropriate stories.

I also wonder how long it took to edit those video interviews - if it's just an
unedited video, it will be both cheap and boring. If someone edited it, but they
are a member of NHS staff, then their time will go un-noticed, but still has to
be paid for somehow!

Anyway, we know that both the CMO and CNO like them and the NAO have asked to do
a third collection for them - this time on end-of-life, so we have some converts
in high places!

It's good, at last, that people are taking on board the importance of the
evidence of experience, and not simply the evidence provided by RCTs.

all good wishes

Pip



-- In patientvoices@yahoogroups.com, "drjotait" <jotait1@...> wrote:
>
> I'm going to see if I can get a copy via my NHS links. It sounds very useful.
> In a recent exchange with one of my senior colleagues - someone I would have
expected to be on 'our side'-  I probably made too many assumptions about her
willingness to be overtly keen on 'story' as a way of making change. She looked
at one of the Junior Doctor stories - not one of the best, unfortunately - and
came to the conclusion that digital stories are a bit like home-made hospital
soaps. (It did make me think about the music we choose, though ... the use of
piano to signify drama may be a bit of a cliche). She then went into some
postmodern stuff about digital and binary, and suggested that what they already
have on their website - long and boring audio files of the converted talking
about their experiences - are much cheaper and just as powerful. Not true, but
how do you argue without alienating?!
> As is often the case, her less senior colleagues are very open to the
potential of digital stories and do have some budget-power, so I shall persist.
The Medical Directors are particularly likely to be persuaded by something from
Innovation and Improvement, so I shall also go 'higher' in the hierarchy with
the potential for story.
> Thanks Steph. If anyone gets hold of an electronic copy that they can share
....
> Jo
>
>
>

I'm going to see if I can get a copy via my NHS links. It sounds very useful.
In a recent exchange with one of my senior colleagues - someone I would have
expected to be on 'our side'-  I probably made too many assumptions about her
willingness to be overtly keen on 'story' as a way of making change. She looked
at one of the Junior Doctor stories - not one of the best, unfortunately - and
came to the conclusion that digital stories are a bit like home-made hospital
soaps. (It did make me think about the music we choose, though ... the use of
piano to signify drama may be a bit of a cliche). She then went into some
postmodern stuff about digital and binary, and suggested that what they already
have on their website - long and boring audio files of the converted talking
about their experiences - are much cheaper and just as powerful. Not true, but
how do you argue without alienating?!
As is often the case, her less senior colleagues are very open to the potential
of digital stories and do have some budget-power, so I shall persist. The
Medical Directors are particularly likely to be persuaded by something from
Innovation and Improvement, so I shall also go 'higher' in the hierarchy with
the potential for story.
Thanks Steph. If anyone gets hold of an electronic copy that they can share ....
Jo



--- In patientvoices@yahoogroups.com, "stephstanwick" <stephstanwick@...> wrote:
>
> I cam acros  this resource recently its a booklet produced ny the NHS
Institute for Innovation and Improvement - its quite a good learning resource
and I got it for my Consultant Prasctitioners Trainees. The reason for bringing
it to everyones attention is that it talks about capturing stories, identifying
emotions, (emotional mapping) finding touch points etc. At our weekend we
discussed the unique selling point  for the Patient Vopices stories but I think
this is well presented whtever you might think about the way it broadens stories
etc. and its a good context against which to understand the processes that are
in the NHS at the moment - worth thinking about too in view of our taking
further the  ideas and future for Patient Voices and positioning it in the wider
NHS
> anyone else seen this yet?
> Steph
>

It will be interesting to see what you think of it.
At one level its a tollkit which over simplifies things and I don't think airs
the pitfalls or the difficulties - particulalry the stories and the authentic
voice, and yes they are geared to experience based design approaches so linked
to a particular service and particular topics I think. - but it does help
provide a wider spectrum for clinicians to think about before reaching for the
mandatory survey! I also think it makes a good discussion point for the kind of
coaching I am doing. some thing you can have a good discussion about without
coming across as 'looney lefty' its suddenly OK to talk about stories.
I guess the reflection for Patient Voices is how to build on the wave and get
across your own uniqueness.
PS you need someone with an NHS email to get you a copy - otherwise its very
difficult so Paul springs to mind?
Steph

Dear all,

Seven new stories from members of the Isle of Wight Stroke Club, 'The longest
night', 'Julie', 'Vicious circles', 'Dancing feet', 'No longer forgotten', 'Too
much sun', 'The most wonderful husband in the world' and 'The hidden
disability', have been released.

All best wishes

Tony

Hmmm. When I tried to log in so that I could order a copy... it wouldn't let me
create a new profile. I suspect you may have to be part of the NHS in order to
get hold of a copy... unless anyone else can discover how to do this!

suggestions welcome.

pip

<stephstanwick@...> wrote:
>
> I cam acros  this resource recently its a booklet produced ny the NHS
Institute for Innovation and Improvement - its quite a good learning resource
and I got it for my Consultant Prasctitioners Trainees. The reason for bringing
it to everyones attention is that it talks about capturing stories, identifying
emotions, (emotional mapping) finding touch points etc. At our weekend we
discussed the unique selling point  for the Patient Vopices stories but I think
this is well presented whtever you might think about the way it broadens stories
etc. and its a good context against which to understand the processes that are
in the NHS at the moment - worth thinking about too in view of our taking
further the  ideas and future for Patient Voices and positioning it in the wider
NHS
> anyone else seen this yet?
> Steph
>

Hello Steph

Thanks for bringing this to our attention.

It does look like an interesting resource and it's important that Patient Voices
should be set in the wider context of what's going on in the NHS and elsewhere.

It's encouraging that people are now recognising the value of stories - we just
need them to see the additional value of our particular stories!!

Our experience of working with the Institute was that they expected the stories
to convey particular messages and were disappointed when they didn't get quite
the stories they wanted ... often a tricky balancing act for us, but possibly
reflects a tendency to gather only particular sorts of evidence, or only the
evidence that supports a particular hypothesis or only the evidence that is
important to the interviewer/researcher rather than the authentic evidence of
experience that many of the stories reveal in relation to what matters to
patients/carers/clinicians.

We'll see if we can order a copy anyway!

all good wishes

pip



--- In patientvoices@yahoogroups.com, "stephstanwick" <stephstanwick@...> wrote:
>
> I cam acros  this resource recently its a booklet produced ny the NHS
Institute for Innovation and Improvement - its quite a good learning resource
and I got it for my Consultant Prasctitioners Trainees. The reason for bringing
it to everyones attention is that it talks about capturing stories, identifying
emotions, (emotional mapping) finding touch points etc. At our weekend we
discussed the unique selling point  for the Patient Vopices stories but I think
this is well presented whtever you might think about the way it broadens stories
etc. and its a good context against which to understand the processes that are
in the NHS at the moment - worth thinking about too in view of our taking
further the  ideas and future for Patient Voices and positioning it in the wider
NHS
> anyone else seen this yet?
> Steph
>

Ah yes. Hawk hunter Brian. Well, he made a wonderful story, full of humour and
very honest about the effects of RA and the ways in which involvement helped to
lift Brian out of that slough of despond and give him more confidence. It was
certainly a pleasure to have him there with us, quietly getting on with stuff
while we attempted to deal with not six, not eight, but ten new storytellers ;-)

I think there will be some stories, when we've recovered enough to sort them
out!!

I hope everyone is well...

pip x


--- In patientvoices@yahoogroups.com, bskclark@... wrote:
>
> Hi Everybody
> ??????? Just spent a jolly three days creating a new story with a good bunch
of people ,Pip and? tony as well ,somebody said it must be like riding a bike?
you
> don,t forget,not true i kept falling off my bike. It was as usual a very good
time tiring as usual but at least i was able to help some off the victims sorry
i mean
> storytellers with putting together their stories it will be well
worth?watching their stories when they become public. Never fails to amaze me
what goes on in other
> peoples lives,still everyone survived intact ,Pip and Tony were well worn out
with ten stories to sort out they worked long hours ,imagine me holding a glass
> of beer? and lets all give three cheers to Granny to be Pip and Tony ,well
done again you?two and thanks for having me.
> Hope everybody is okay . I am going to lie down now i am well and truly
shattered.
>
????????????????????????????????????????????????????????????????????????????????\
? Brian (Hawk hunter)
>