Winter News 2013 - Beating Bowel Cancer

News
The magazine from Beating Bowel Cancer
Decembeard success
How hundreds of Beardys got behind the campaign
Patient Day is back
Find out how you can get involved
Winter 2013

Welcome
2012 – what a year
January saw the first
national TV and radio
bowel cancer awareness
campaign and our
parliamentary reception
hosted in the magnificent
Speaker’s State
Apartments. In April, we
were very proud of our
fantastic runners in the
London Marathon and
more patients than ever
attended our Patient Day.
In the summer, our
patron Matt Dawson was
well and truly challenged
in a Dragon Boat Race
by Bowel Cancer Voice
Debbie Puxty. In October,
70 colorectal nurses
gathered to attend their
national conference
organised by our Patient
Services team. And what
an amazing end to the
year with over 700 men
and women joining our
band of beardys!
Demand for our patient
services keeps rising. More
patients than ever have
contacted our helpline
and visited us online.
So what does this year
hold? This month we’ll
be launching our Patient
Service Pledge, setting out
the minimum standard of
care and treatment that
should be delivered to
everyone diagnosed with
bowel cancer. From March,
everyone aged 55 in six
pilot areas in England will
be invited to take part in
flexible sigmoidoscopy
screening, so please make
sure you take it up if you
are offered it.
Patients are still being
denied treatment from
which they could benefit.
This year we have a clear
goal to urgently address
the inequality between
nations which means
that life-changing drugs
are restricted for use in
Scotland and Wales, but
routinely given over the
border in England.
None of this work would
be possible without your
generous support. So
in 2013 we have some
amazing ways for you
to raise funds. With the
success of our community
fundraisers in the
Midlands and the North
West, we are committed to
growing a team of them in
other areas of the country.
In August, we will be one
of only thirty charities to
benefit from RideLondon,
nicknamed the ‘marathon
on wheels’. If you’re a
cyclist then this is the
event for you. Plus at the
end of the year we need
you to help us make the
next Decembeard even
bigger and better.
Wishing you a Happy
New Year.
Mark Flannagan
Chief Executive
Beating Bowel Cancer
2 www.beatingbowelcancer.org

Highlights
What’s inside…
5 – Patients struggle to
get travel insurance
Find out how our new partnership could help
8 – Patient Day is back
See what's happening at this year’s event
10 – Dragon Boat Race
Read about our patron, Matt
Dawson’s, tough challenge
13 – Our Beardy month
Find out what happened when we
challenged our supporters to ‘sport a beard’
14 – Thank you
Just some of our supporters’
fantastic achievements
www.beatingbowelcancer.org 3

Bowel Cancer Voice
Jacquie’s story
Our Bowel Cancer
Voices are a network
of people affected by
bowel cancer and their
relatives who are happy
to share their story to
support others. Some
of our Bowel Cancer
Voices donate their
time for patient-topatient
support, where
they talk to other
people about their
experience of bowel
cancer and support
them through their
treatment. One of these
is Jacquie Fraser, 62,
who is a retired nurse.
It was during Jacquie’s
work at a hospice
20 years ago that she
became interested in the
psychological effects of
a cancer diagnosis and
retrained as a counsellor.
Jacquie was 57 years old
when she experienced
a small amount of rectal
bleeding for 3 weeks,
which she thought was
piles. Her GP did an
examination and referred
her urgently to a colorectal
surgeon.
Jacquie was
subsequently diagnosed
with Stage 3 bowel cancer
and had radiotherapy and
chemotherapy followed by
surgery. A small tumour on
her liver was successfully
treated by radio frequency
ablation. “I have worked
all my life with people
who have life-threatening
conditions, but I was still
shaken to my very core”,
says Jacquie, who is now
free of cancer but has six
monthly reviews.
During her treatment,
Jacquie called our Nurse
Advisors for support.
“I found them enormously
helpful and once I was
well I was very keen to
give something back to
the charity, so I offered
to support other patients. I
was sent some very helpful
guidelines which gave me
the confidence to pick up
the phone and call my first
contact. Marion* was a
bowel cancer patient who
had also suffered from
long term depression.
I think I helped Marion,
because I am a couple
of years further on in
my treatment and could
reassure her that, while a
cancer diagnosis changes
you forever, after time you
don’t wake up every single
day feeling so raw.”
If you would like
to talk to another patient
or carer, please get in
touch with our Nurse
Advisors: nurse@
beatingbowelcancer.org
or call 08450 719301.
*Name has been changed
4 www.beatingbowelcancer.org

Insurance solutions
Bowel cancer patients struggle
to get travel insurance
A survey of bowel cancer patients conducted last year
revealed that the majority of people, 85%, face difficulties
when purchasing insurance, particularly travel insurance,
due to their condition.
Respondents highlighted
that they struggled to
get insured at affordable
prices, some said they
couldn’t get insured until
five years after remission
and some had been refused
altogether.
So we are pleased to
announce that Beating
Bowel Cancer has partnered
with a company called
Unique to offer a range
of insurance products and
financial services for bowel
cancer patients and their
families. Unique does the
shopping around for you
to find the best solution.
The partnership is due
to launch in February and
includes travel, home and
motor insurance. For each
policy sold, Unique makes
a donation to us at no extra
cost to you. You’ll be able
to buy:
Travel insurance – single
trip Platinum and Gold
policies, providing varied
levels of cover depending
on your individual needs.
Also, Travel Extras mean
that you have the option of
discounted rates on airport
hotels, lounges and parking
– an extra bit of luxury,
relaxation and privacy
before jetting off on your
break.
Home insurance –
building and contents cover,
separately and combined,
with specialist features as
standard. They can cover
refrigerated medication,
mobility aids, modifications
and more. For new
customers, you can save
10% off your renewal
quotation (subject to
minimum premium of
£138 and underwriting
criteria).
Motor insurance –
searching for the best
quotation for you from
a panel of insurers, with
breakdown cover and
legal expenses part of the
package.
If you’d like more
information about these
insurance services, or
you’d like to ask anything
before the launch, please
email unique@ajg.com
or call 01603 828 368.
Unique is a trading name of
Heath Lambert Limited, which
is authorised and regulated by
the Financial Services Authority.
Registered Office: 9 Alie Street,
London E1 8DE. Registered
Number: 1199129 England and
Wales. www.gallagherheath.com
www.beatingbowelcancer.org 5

Health policy
What’s your
experience
of the NHS?
Patients sharing their experiences of their local
NHS services – good or bad – are essential
and really valuable in helping to improve the
patient experience. We know this because
health services and the NHS tell us how they
have improved services as a direct result of
feedback from their patients.
So we have partnered
with the online patient
experience website Patient
Opinion to give you the
chance to share your own
stories and suggestions on
how your local services
could be made better for
all bowel cancer patients.
If you’re a patient, carer,
family member or friend,
we’d like to hear from you.
Whether you feel there
could be vital
improvements at your local
hospital or you want to say
thank you to the staff that
treated you, this is your
opportunity to share your
thoughts with the people
that can make a difference
to how your local services
are delivered.
You can tell your story
on our website by filling
in the online form
www.beatingbowelcancer.
org/patient-opinion
A gold
standard for
care and
treatment
B
eing diagnosed with
bowel cancer is a
frightening experience.
Many patients don’t
know what to expect when
they start going through
treatment or what level of
service they are entitled to.
To improve the experience
we will be launching a
Service Pledge for Bowel
Cancer, which will outline
the ‘gold’ standard of care
and treatment we believe
every bowel cancer patient
should have the right to
expect.
At our forthcoming
Be Loud Be Clear
parliamentary reception
we will be asking all MPs
to sign the pledge, as a
commitment to ensuring
improvements to their
local services.
In the coming months
we will be developing local
campaigns helping bowel
cancer patients voice
what matters to them
about their bowel cancer
services. Look out for how
you can take part in the
project.
6 www.beatingbowelcancer.org

New symptoms page
If you happened
to have visited
our website lately,
you may have seen
the symptoms
page looking very
different. We know
that the majority of
people visiting our
website look at the symptoms page, so we’ve redesigned
it to make it easier to use and more interactive.
Michael Ingram, Digital Development Manager, said:
“We’ve also made the symptoms page compatible with
mobile phones, so people can look at it on the go. Since
we made these changes the time mobile users spend on
the page has increased significantly. The next stage is to
get the whole of the website compatible to view on your
mobile phone.”
1 in 4 video
Through some research we commissioned last
year, we found that one in four people in the UK
are affected by bowel cancer either directly, or
someone they know. We produced a film, called
1 in 4, to showcase the work we do and how
people can benefit from our support.
It shows Debbie, who was diagnosed at 29, Goff,
who lost his wife Sheila to bowel cancer, and Alison,
who has advanced bowel cancer. Their stories are
both moving and inspiring. You can see the film by
visiting our website:
www.beatingbowelcancer.org/why-support-us
We would like to express our heartfelt thanks to
Debbie, Alison and Goff for sharing their stories, and
to Procreation, who kindly produced this wonderful
film at no charge.
Online community
Facebook
groups
We are currently
piloting ten bowel
cancer support groups
on Facebook. The
groups are managed
by Bowel Cancer Voices.
They are for patients or
former patients to get
in touch with others
in their local area to
exchange experiences
and support each other.
Following the pilot,
we hope to recruit
volunteers to run similar
groups all around the
country. Please visit
www.beatingbowel
cancer.org/facebook
supportgroups for more
information.
Don’t forget to tell
us what you think
We still want to hear
your feedback on
what you think of News.
Please fill in this short
survey to let us know what
you’d like to see more of.
www.beatingbowelcancer.
org/AutumnNewsletter
Survey
www.beatingbowelcancer.org 7

Care and support
Saturday
27 April 2013
Following the success of Patient Day 2012, we are holding the
same FREE event in 2013. The day allows you to meet others,
share experiences and learn more about the latest developments
in bowel cancer. We’re inviting both patients and their carers to
join us and we also have 50 places reserved for colorectal and
stoma clinical nurse specialists.
Beating Bowel Cancer Together
Last year, our patron,
Professor Lord
Ara Darzi, Honorary
Consultant Surgeon at
Imperial College Hospital
gave a fascinating
presentation on advances
in bowel cancer surgery,
and we are delighted that
he has agreed to be our
keynote speaker again
in 2013.
The day will include
workshops on innovations
in treatment and
research, advanced
bowel cancer, managing
long term side effects,
emotional and
psychological issues
and relaxation. New topics
this year include intimate
relations following bowel
cancer treatment, family
history of bowel cancer
and a workshop
for carers.
The exhibition room will
have a variety of stands
from companies who offer
goods and services to
make bowel cancer
patients’ lives easier and
you can book a free,
private consultation with a
colorectal or stoma nurse.
For more information
about the event and to
see highlights of last
year’s event, please visit
www.beatingbowelcancer.
org/patient-day-2013.
You’ll find the what’s on
programme and you can
register your attendance.
You can also call us to
request an application
form by post.
8 www.beatingbowelcancer.org

Care and support
Patient Services
National Colorectal Cancer Nurses
Network Conference
In October we were delighted to
organise the National Colorectal
Cancer Nurses Network’s annual
conference in London, which was attended by 70
colorectal and stoma nurses.
The delegates were given presentations on a wide
variety of subjects ranging from the Cancer Drugs
Fund to bowel management after rectal cancer to selfmanagement
pathways. To wind up a very successful
day of learning and networking, one of our Bowel
Cancer Voices, Hazel Elkamouri, gave a patient
perspective on the challenges of coping with advanced
bowel cancer.
What the nurses valued most from the day was the
opportunity to network with other colleagues and share
experiences.
New Chemotherapy Drugs
There are two new drugs
in the pipeline to treat
advanced bowel cancer;
both have been licenced
by the US Food & Drug
Administration, and await
approval here in the UK.
Zaltrap (aflibercept) is
a targeted therapy which
aims to block the growth
of blood vessels to
tumours (angiogenesis).
In a large study of patients
with previously treated
advanced bowel cancer,
aflibercept in combination
with chemotherapy
(FOLFIRI) was shown
to help some patients
to live longer.
Stivarga (regorafenib)
is an oral medicine which
targets key proteins that
are essential for the
survival of the cancer cell.
By specifically targeting
these proteins, regorafenib
may stop cancer growth or
reduce the growth of the
tumour.
There are clinical trials
available for both of these
drugs – contact us if you
would like further details.
New Member
of our Medical
Advisory Board
We are delighted to
welcome to our
Medical Advisory Board
Mr Hassan Z Malik, a
consultant hepatobiliary
surgeon and clinical lead
for liver surgery at
University Hospital
Aintree. Appointed to
the hospital in 2007, he
has introduced complex
liver surgical techniques
within the unit and his
areas of clinical interest
include the management
of colorectal liver
metastases.
Mr Hassan Z Malik
Consultant hepatobiliary
surgeon and clinical lead for
liver surgery at University
Hospital Aintree.
www.beatingbowelcancer.org 9

Support us
Challenge Matt
Dragon Boat Race
It was a race that
needed nerves of steel
as well as a good
paddling technique;
our Dragon Boat Race
took place back in
September and raised
a fantastic £10,000
towards our work. It
was the first of our
‘Challenge Matt’
events, where patients,
families and friends
can get involved and
test the stamina of our
patron, Matt Dawson.
Two boats, one
captained by Matt, and
the other by our Bowel
Cancer Voice, Debbie
Puxty, battled it out to be
crowned champions of the
river at the annual Dragon
Boat race organised by
Kingston Rotary Club.
It was a closely run
contest with both teams
doing their very best to
finish the 250m course
first, spurred on by the
support of our Beating
Bowel Cancer supporters
on the riverbanks. After
three races, the winner
with a score of 2-1 was
Team Debbie!
A big thank you to our
teams of paddlers who
provided fantastic muscle
power and the supporters
on the riverbank who
helped us to raise such
a huge amount of money.
We’re currently planning
more Challenge Matt
events for 2013 – so don’t
forget to keep an eye out
on our website for the
latest information. Who
knows – it might be you
challenging Matt in his
next adventure.
10 www.beatingbowelcancer.org

New members of staff
Meet the team
We’ve welcomed three new members of staff recently – here we find
out a little bit more about them.
Natasha Etienne joined us in December as
Community Fundraising Manager. Natasha has
worked in the charity sector for a number of years
including fundraising roles at Cancer Research UK
and Arthritis Research UK. She is looking forward to
working on expanding the charity’s network of Regional
Fundraisers and getting more people throughout the UK
supporting us. Natasha says: “It’s amazing to see the
generosity of people and I love the buzz of fundraising.”
Elspeth McAusland, Media and PR Manager, joined
the team in October. She has been busy supporting
the charity through Decembeard, as well as getting
Beating Bowel Cancer’s voice out in the media around
issues such as the introduction of bowel scope (flexi-sig)
screening and the latest National Bowel Cancer Audit.
Elspeth joins us from previous roles in two other
national charities following a career as a journalist.
A
fter volunteering in the Communications and
Campaigns team two years ago, Sarah Chamberlain
has joined the charity on a six month basis as Trust and
Major Gifts Assistant. Sarah’s mum is a bowel cancer
survivor and this experience has drawn her to support
the cause which is close to her heart. Having previously
worked at Action Against Hunger, Sarah says she’s
enjoying learning about Trusts fundraising.
www.beatingbowelcancer.org 11

Get involved
Get involved in 2013
If you’re considering a challenge in 2013 or want to push yourself
to achieve something special, look no further than Beating Bowel
Cancer’s fantastic new events.
If you’re a budding
Bradley Wiggins or an
aspiring Lizzie Armistead
why not check out Ride
London; a brand new 100
mile cycling road race in
London this summer. The
route will take you in the
tracks of the Olympians
and follows the Olympic
Road race route finishing
on The Mall.
If running is more your
thing, for the first time we
have guaranteed places in
the Greater Manchester
Marathon, the Brighton
Marathon, and for those
wishing to go further
afield, the exciting Berlin
Marathon.
Following our huge
success in the Virgin
Active London Triathlon in
2012, we have doubled
the number of places we
have available for 2013.
If you can’t decide
between running or
cycling why not try
a triathlon?
If you’re after something
more exotic, get involved
in the Coast to Coast
Rainforest Trek in Costa
Rica. Our very own
Community Fundraising
Coordinator, Leanne, took
on the trek in November:
“I can’t recommend it
highly enough. It was the
hardest thing I’ve ever
done, but definitely the
most rewarding.”
If you’ve been inspired
to get involved and take
on a challenge, check
out our 2013 Event
Brochure included with
your copy of News or
visit our website.
12 www.beatingbowelcancer.org

Get involved
A Beardy thank you!
We’d like to say a
massive thank you
to all those who
took part in our
Decembeard
fundraising
campaign. Our team
of Beardys did us
proud by sporting all
kinds of weird and
wonderful beards to
help us raise funds
to support our work.
We had 740 Beardys
join us, so a big
thank you to all of you and
everyone who sponsored
one of our Beardys.
To date we’ve raised
£58,367, smashing
all targets.
Our campaign was
backed by Everton
footballing legend, Kevin
Sheedy. Kevin was
diagnosed with bowel
cancer in the summer,
and following successful
surgery, is back coaching
the Everton Academy
team. He is now helping
us to raise awareness of
the condition and get more
people to recognise the
symptoms.
Kevin explained “I knew
something wasn’t right
as I was going to the toilet
more often than normal
and when I noticed I was
passing blood I knew I
had to visit to the doctor.
I lost my mum to bowel
cancer and my dad had
a successful operation,
but it was still a shock
to be diagnosed.
“Thankfully I got help
early and I was able to
have an operation which
was successful. So I
wanted to team up with
Beating Bowel Cancer to
help raise awareness of
the condition to ensure
more people go to the
doctor when they
Kevin Sheedy takes part in radio
interviews with our CEO Mark.
experience symptoms; it’s
so important not to bury
your head in the sand.
“Decembeard is a great
way to get people,
especially men, to talk
about bowel cancer. It’s
a fun campaign and I’m
really pleased I was able
to be involved.”
Decembeard will be back
for 2013, so don’t forget
to watch this space to
find out how you can get
involved later this year.
www.beatingbowelcancer.org 13

Thank you
Thank you to…
Here are just some of the amazing things our supporters have been
up to recently.
Kevin Flay and Bruce
Gresswell, along with
family and friends, who
took on the Hadrian’s
Wall Challenge in
memory of Claire
Gresswell. They raised
over £6,500 and money
is still coming in!
Our runners in the
Adidas Silverstone,
Bupa London 10,000,
Bupa Great North Run,
Run to the Beat, Royal
Parks Half Marathon
and the Virgin Active
London Triathlon have
all worked so hard and
raised an incredible
£114,000.
One of our star fundraisers
and supporters, Dafydd
Farr-Jones has reached
the £10,000 milestone
through his special one-off
eBay auctions. Thank you
and congratulations
Dafydd!
Our intrepid team of
explorers from The
Royal Cornwall Hospital
took on Trek Borneo.
The team hiked their
way to £11,300.
Supporter Goff
Norrington put on his
annual golf day and
raised £1,720. This is
the fourth time he has
organised the event at
West Malling Golf Club
and he has raised over
£6,500 in total.
Laura Barrett has been
supporting us all the
way from Dubai. So
far, Laura, her family
and friends have raised
over £10,000 through
a variety of events.
Our two teams of
participants who took
on the Coast to Coast
cycle challenge over
the summer. Together
they have raised a
superb £8,000.
14 www.beatingbowelcancer.org

Regional Fundraising Update
In the last newsletter we introduced our two
new Community Fundraisers for the North
West of England and the Midlands. Here is
what they’ve been up to.
Thank you
North West –
Rachel Thomas
The Autumn has been
a great time for
volunteering and
fundraising in the North
West. We now have a
steadily growing bank of
volunteers who are helping
to organise fundraising
events and collections, as
well as represent Beating
Bowel Cancer at some
awareness events – so
thank you to everyone
who has helped out!
Plus a massive thank
you to those who have
organised their own
fundraising events in aid
of Beating Bowel Cancer
across the region – these
include taking part in
triathlons and marathons,
selling and reading books,
donations from long
term employment and
anniversaries and even
chest waxing.
So far for 2013 we
already have some great
events in the calendar plus
Helen Chidlow and Claire Booth
– members of the Cheshire
Fundraising Committee
lots of collections which
we need volunteers for,
so if you would like to get
involved, please contact
local Community
Fundraiser, Rachel
Thomas on 07825
910943 or email
rachel.thomas@
beatingbowelcancer.org
Midlands –
Sajedah Patel
Abig thank you to all our
Midlands supporters
and volunteers for helping
out over the last few
months since Beating
Bowel Cancer came to the
Midlands. By sharing your
ideas, your invaluable
knowledge of your local
area and being readily
available to help out, it
has been a fabulous start.
We have been busy raising
awareness of the charity
and its work by gaining lots
of regional press coverage,
recruiting new supporters to
the cause and raising funds.
We’ve been bag packing at
Sainsbury’s Coventry and
shaking our buckets and
donning our Bum Shorts
at two collections at
Leicester Railway Station.
Volunteers Alan Jayne and
William Lord rallied their
friends and family for
a collection on Knowle
High Street raising a
whopping £567.82!
We have lots more
collections booked and if
you are able to help out for
a few hours, your support
could make a difference.
Contact Sajedah Patel
on 07825 971623 to
find out more or email
sajedah.patel@
beatingbowelcancer.org.
www.beatingbowelcancer.org 15

CONTACT US
NOW TO BOOK
YOUR PLACE
Saturday 27 April 2013
9:00am-4:30pm
Royal College of Surgeons, London
Beating bowel cancer together
This free event is for anyone affected by bowel cancer and includes:
Information and support hall, workshops, presentations, one to
one nurse consultations, keynote speakers, and much more.
T: 08450 719300 (Lo Call rate) W: www.beatingbowelcancer.org E: patientday@beatingbowelcancer.org
Registered Charity No.1063614 (England & Wales) SC043340 (Scotland)