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South Manchester Network IN THIS ISSUE Local Grant 2 Social Meet Ups 3 Family Fun Day Patient Education Sessions Crohn’s and Colitis Awareness Week We Have A Winner! Direct Line World IBD Day Walk It Dates For Your Diary 4 5 6 7 7 8 9 10 In this issue, you will find out more about the team, what we’ve been up to and what we have planned in upcoming months. 2017 was a big year for the South Manchester Network! It saw the revived group relaunched, new members recruited, and dozens of events organised and attended. A particular highlight was Crohn’s and Colitis Awareness Week, which saw members of the Network involved in various awareness and fund raising activities – and a local landmark lit up in purple (more on that later!) SPRING 2018 WELCOME TO OUR SPRING 2018 NEWSLETTER New Recruits In recent months we have welcomed new volunteers to the group, and would like to introduce Emma Greenwood. “I'm a mother of three young boys, and I have worked as a nurse for the last 18 years. I have had severe indeterminate IBD for 4 years. I never have had the joy of experiencing remission but one day it is a goal! I've been on many treatments including steroids, mercaptopurine, infliximab, vedolizumab and golimumab. I've had several hospital admissions and collected post op complications! Last year I had potentially curative surgery. I had a total colectomy, got my life back with an ileostomy and then had a formation of a J pouch and reversal in May. “I started volunteering for the South Manchester Network in 2017. I decided to join to help raise awareness and funds for people with IBD. I am the volunteer that works with local hospitals to improve services – of which I have had plenty of experience now from both sides! The hardest part of living with IBD for me has been the effect it has on family and those close to you. I think it's important we all work together to raise awareness, and support each other in any way we can. We can work with hospitals to improve care, and raise awareness of the needs of people living with IBD. Our fundraising efforts also contribute towards researching for a cure and better treatment options, so ultimately there could be a future where people, families and friends no longer experience life with IBD!” THANK YOU HELEN Helen Stephenson decided to step down as Lead Volunteer at the end of 2017. Helen was instrumental in establishing the Network, recruiting volunteers, organising events, and supporting the work of head office to help them reach as many people with IBD as possible. We are extremely grateful for all the hard work and long hours Helen put in to keep the Network going – and particularly for dressing as Bez the Bear, including taking part in a parade for Stockport Carnival in the middle of the summer! Jenny Cooper has now taken on the role of Lead Volunteer, aiming to carry on the amazing work Helen has already done.
Transcript of IN THIS ISSUEs3-eu-west-1.amazonaws.com/files.crohnsandcolitis... · Crohn’s and Colitis. There...
South Manchester Network
IN THIS ISSUE
Local Grant 2
Social Meet Ups 3
Family Fun Day
Patient Education Sessions
Crohn’s and Colitis Awareness Week
We Have A Winner!
Direct Line
World IBD Day
Walk It
Dates For Your Diary
4
5
6
7
7
8
9
10
In this issue, you will find out more about the team, what we’ve been up to and what we have planned in upcoming months.
2017 was a big year for the South Manchester Network! It saw the revived group relaunched, new members recruited, and dozens of events organised and attended.
A particular highlight was Crohn’s and Colitis Awareness Week, which saw members of the Network involved in various awareness and fund raising activities – and a local landmark lit up in purple (more on that later!)
SPRING 2018
WELCOME TO OUR SPRING 2018 NEWSLETTER
New Recruits In recent months we have welcomed new volunteers to the group, and would like to introduce Emma Greenwood.
“I'm a mother of three young boys, and I have worked as a nurse for the last 18 years. I have had severe indeterminate IBD for 4 years. I never have had the joy of experiencing remission but one day it is a goal! I've been on many treatments including steroids, mercaptopurine, infliximab, vedolizumab and golimumab. I've had several hospital admissions and collected post op complications! Last year I had potentially curative surgery. I had a total colectomy, got my life back with an ileostomy and then had a formation of a J pouch and reversal in May.
“I started volunteering for the South Manchester Network in 2017. I decided to join to help raise awareness and funds for people with IBD. I am the volunteer that works with local hospitals to improve services – of which I have had plenty of experience now from both sides! The hardest part of living with IBD for me has been the effect it has on family and those close to you. I think it's important we all work together to raise awareness, and support each other in any way we can. We can work with hospitals to improve care, and raise awareness of the needs of people living with IBD. Our fundraising efforts also contribute towards researching for a cure and better treatment options, so ultimately there could be a future where
people, families and friends no longer experience life with IBD!”
THANK YOU HELEN
Helen Stephenson decided to step down as Lead Volunteer at the end of 2017. Helen was instrumental in establishing the Network, recruiting volunteers, organising events, and supporting the work of head office to help them reach as many people with IBD as possible.
We are extremely grateful for all the hard work and long hours Helen put in to keep the Network going – and particularly for dressing as Bez the Bear, including taking part in a parade for Stockport Carnival in the middle of the summer!
Jenny Cooper has now taken on the role of Lead Volunteer, aiming to carry on the amazing work Helen has already done.
Crohn’s and Colitis UK South Manchester Network Newsletter Newsletter
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LOCAL GRANT We are delighted to confirm that the South Manchester Network have been able to donate £10,000 to Wythenshawe Hospital to help fund a psychological support staff member for patients struggling with their IBD diagnosis, the quality of life elements of their diagnosis, and consequences from their surgery and medications. Mental health and psychological support are areas that the Network agrees are vitally important, and sometimes overlooked, so we are pleased to be able to help fund this role for one year. The data from this pioneering pilot project aims to demonstrate to NHS boards that it can be cost effective – by offsetting admissions and maintenance therapy costs /admissions from surgery – and so would support a business case for the future.
As well as benefitting patients at Wythenshawe, the data could be used to support a case for long term funding for this kind of post across the NHS. A similar post already exists at Manchester Royal Infirmary, and so by supporting this project it helps improve equity of access to services for patients in the South Manchester area. Consultant at Wythenshawe Hospital, and the South Manchester Network Clinical Advisor, Paul Knight said: “The funding for a psychological support worker in IBD at Wythenshawe will be a fantastic development. I think this will be a key addition to our team and help our patients suffering with all the psychological problems associated to coming to terms with the diagnosis.”
Dr Paul Knight and IBD nurses receiving the £10,000 donation from South Manchester Network volunteers Andrea Macnab and Emma Greenwood
TRAINING In February 2018, Jenny Cooper and Andrea Macnab attended a Crohn’s and Colitis UK Leadership Training event in London, which explained about different leadership styles, and how to get the best out of volunteers. It was also a great chance to meet and speak to members of other Networks, and ask them about what they were doing in their areas to raise awareness and funds.
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In January and March we held meet ups at Cafelito in Stockport. This is a great locations for a lot of people, as it is next to the railway station, near the bus station, and convenient for the M60 for people travelling from further afield. There are also plenty of toilet facilities!
We have had some fantastic feedback, with those attending saying it was great to be able to meet up with other people who have IBD, and understand what they are going through.
Our next social meet up will take place at Cafelito (next to Stockport railway station) on Saturday May 19th
Volunteer With Us
We are looking for more volunteers to help us to organise and attend awareness and fundraising events.
It is a great opportunity to make a significant difference in this area.
Whatever interests, experience or skills you have, there are many ways to volunteer your time, so if you’ve got plenty of enthusiasm we’d love to hear from you!
There is more information on volunteering here: https://www.crohnsandcolitis.org.uk/get-involved
Social Meet Ups
Our social meet ups have been going from strength to strength, following our first in Manchester City Centre in July 2017.
In October 2017, we visited Charley's Corner Coffee Shop in Sale Moor. We thought the purple décor was especially appropriate!
If you have received this newsletter by post and would be happy to receive future editions by email please provide your name, membership number and email address to [email protected]
This will save the Network valuable funds which can be used to benefit all those affected by Inflammatory
Bowel Disease.
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Family Fun Day
After months of planning, in November we helped hold a Family Day at the Old Trafford Cricket Ground. There were educational talks from consultants, IBD nurses and psychologists on subjects including diet, treatment options, fertility and fatigue. The South Manchester Network also organised mindfulness and meditation sessions. As well as our own information stand, other organisations also had stalls, including Get Your Belly Out, CiCRA, Stomawise and Over The Wall. Children who attended were also able to take part in games and craft activities, as well as cricket sessions.
Sir Graham Brady, MP for Altrincham and Sale West, also attended the event. We spoke to him about the work of Crohn’s and Colitis UK, the work of the South Manchester Network, and the
importance of raising awareness of IBD.
At this event we were able to speak to the CEO of Crohn’s and Colitis UK David Barker, about his vision for the charity, and the work that is being done across the country to raise awareness of IBD, and to improve services and treatment for IBD patients. This was a great opportunity for the Network to get some feedback on the work we have been doing, and get ideas of what we can do in the future
in South Manchester.
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Patient Education Sessions We attended IBD North West Patient Education Sessions at Novotel Manchester West (Worsley) in October 2017 and February 2018. The first of these included a great question and answer session about IBD, where people with the conditions were able to ask about issues that had affected them, as well as general questions about Crohn’s and Colitis. There was also a brilliant talk about coping with IBD, which looked at the psychological effects of having a chronic illness.
At the February session we were told about some of the alternative treatments in IBD, and the clinical view of them (ie was there research that backed up the claims that they had a beneficial effect). The session also looked at the current treatments for Crohn’s and Colitis, the process behind developing new drugs for treatment, and what new ones are on the horizon.
We had information stalls at these events, with booklets, information sheets and benefits guides for attendees, which have been put together for attendees. Anyone wanting to access these publications can also find them online: https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications At both of these events we also had pin badges, pens and wristbands in exchange for donations. The next IBD North West Patient Education Session will take place at Novotel Manchester West (Worsley) on Sunday 22nd April, and will focus on IBD and surgery, and IBD and cancer.
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Crohn’s and Colitis Awareness Week 2017
1-7 December we held various activities to raise awareness and funds, as part of Crohn’s and Colitis Awareness Week. With the support of Stockport Town Council, the town hall was lit up purple for three days to raise awareness of Crohn’s and Colitis. The Town Council’s Cabinet member for health, Tom McGee, said: “It is vitally important that we do all we can to raise awareness of this ‘invisible illness’. “Many people with Crohn’s Disease or Ulcerative Colitis suffer in silence because they don’t know who to talk to or where to find information. “Knowing there is information and support available means they don’t have to feel isolated.”
Lead Volunteer Jenny Cooper had an awareness and fundraising stall at Stockport Railway Station on Monday 4th December, where she spoke to several people about IBD, as well as Crohn’s and Colitis UK and the Network. Jenny and Emma Greenwood spent a morning at Manchester Royal Infirmary on Tuesday 5th December with an information and awareness stall, where they also spoke with patients who were attending clinics. Link Volunteer Andrea Macnab set up information stalls at two Jacobs sites in Manchester and Salford during awareness week. Jenny held a bake sale at her workplace for Purple Friday on Friday 1st December. Emma also held a Christmas craft fundraiser at her home, which raised over £600!
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We Have A Winner! For several months we ran a ‘Name The Bear’ competition, with dozens of people trying to guess what he or she was called at events including Flixton Carnival, Stockport Carnival, and the IBD North West Patient Education Sessions.
The draw took place during awareness week in December – with Daisy revealed as the name for our bear! The lucky winner was Harriet, who you can see was over the moon to have won. Congratulations Harriet, and thank you to everyone who took part.
Direct Line In October 2017 Andrea and Helen attended an invisible illness awareness day at Direct Line’s offices in Manchester, where they spoke to staff about IBD and the impact it has on those who live with it. It was a great opportunity to be able to speak to staff about IBD, and raise awareness of Crohn’s and Colitis UK – especially the South Manchester Network.
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Getting involved is a piece of cake!
Choose a date and venue for your bake sale
Ask friends, family and colleagues to help make some delicious goodies for you to sell
Spread the word with a poster, and online through social media
Have some fun, and know that you’re making a difference to people with IBD
A free Bake It fundraising pack can be ordered through the Crohn’s and Colitis UK website, with recipes, purple icing, and cupcake flags. As well as selling cakes, why not…
Put the kettle on, and collect extra donations for tea and coffee
Competition time! Holding a bake-off style competition is a great way to encourage everyone to get baking
You could also hold a raffle, or make your bake sale part of a dress-down or non-uniform day
Share your photos from the day with Crohn’s and Colitis UK by posting them to their Facebook page, or tagging @CrohnsColitisFR in your tweets! If you don’t fancy holding a bake sale, why not do a sponsored silence, host a quiz, or do a dress down day at work or school. If you want to create your own Just Giving page to raise funds for the South Manchester Network, please notify [email protected] to ensure the money goes into local projects.
Bake It!
This World IBD Day (Saturday 19th May), why not raise awareness and funds for the Crohn’s and Colitis UK South Manchester Network by getting busy in the kitchen! Why not get involved with Bake It, and hold a bake sale at home, work, school, church, or IBD clinic!
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WALK IT will return to Manchester on Saturday 16th June. This is a chance for people to come together and to raise much needed funds and vital awareness for Crohn’s and Colitis UK. These are fantastic community days, with walks starting and finishing at a fun-filled event village, with food and entertainment for all ages! Sign up with your friends and family (and dogs!) for a 5k or 10k through the centre of Manchester. The funds raised will be used to pay for pioneering research, provide expert helplines and campaign for more specialist IBD nurses. By supporting WALK IT you are changing the lives and futures of people with Crohn’s and Colitis. If you don’t fancy doing the walk, volunteers are also needed to help the day run smoothly. FAQs Who can take part? The event is open to everyone. All routes are accessible to wheelchairs and buggies, and there are regular toilet stops along the way. I’ve never fundraised before – is it difficult? We have a fundraising guide which we’ll send to you when you register. Most walkers start by setting up their online fundraising page and sharing if on social media. You can contact us at any time for support and advice. How much do I have to raise? We ask walkers to aim for a target of £100 raised in sponsorship; people are often surprised at how easy it is to raise money once you start! What happens to the money I raise? The money raised at WALK IT supports our helplines, the information we provide and our ground breaking research.
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The South Manchester Network has made every reasonable effort to ensure the content of this newsletter is accurate, but accepts no responsibility for any errors or omission. The views of the contributors do not necessarily reflect the views or policies of Crohn’s and Colitis UK and no
reference in this newsletter to any product or service is intended as a recommendation.
CONTACT US
South Manchester Network Lead Volunteer: Jenny Cooper Helpline: 0300 222 5700* Website: www.crohnsandcolitis.org.uk/sm Email: [email protected]
Crohn’s and Colitis UK 45 Grosvenor Road, St Albans AL1 3AW [email protected] www.crohnsandcolitis.org.uk Charity registered in England Number 1117148 Charity registered in Scotland Number SC038632 A company limited by guarantee in England: company number 5973370
HELPLINE Our helpline is a confidential service providing
information and support to anyone affected by Crohn’s
Disease, Ulcerative Colitis and other forms of
Inflammatory Bowel Disease (IBD).
Our team can: help you understand more about IBD, diagnosis and
treatment options provide information to help you to live well with your
condition help you understand and access disability benefits be there to listen if you need someone to talk to put you in touch with a trained support volunteer
who has a personal experience of IBD
CONTACT US BY:
Telephone: 0300 222 5700*
Mon, Tue, Wed and Fri – 9 am to 5 pm
Thu – 9 am to 1 pm
Email: [email protected]
Web Chat (Live Online): see our website for details
*Calls to this number are charged at a standard landline rate
or may be free if you have an inclusive minutes’ package.
Calls may be recorded for monitoring and evaluation
purposes.
facebook.com/ CrohnsColitisSouthManchester
@CrohnsColitisSM
DATES FOR YOUR DIARY
IBD PATIENT EDUCATION SESSION Sunday 22nd April 9:30am-11:50am Novotel Manchester West, Worsley, M28 2YA WORLD IBD DAY Saturday 19th May SOCIAL MEET-UP Saturday 19th May 10am-12pm Cafelito, Stockport, SK1 3TA (next to the railway station) WALK IT Saturday 16th June St Michaels Flags and Angel Meadow, Manchester, M4 4TF ENGLAND V AUSTRALIA - AWARENESS STALL Sunday 24th June 11am-3pm Lancashire County Cricket Club, Talbot Road, M16 0PX STOCKPORT CARNIVAL AND CAR BOOT SALE Saturday 21st July 9am-5pm
Woodbank Park, Stockport
Thank You
The South Manchester Network would like to say thank you to the following for their support, fundraising and kind donations:
Stockport Ukulele Players: £500
Stockport Carnival Committee: £300
Cafelito, Stockport for their support
of our social meet ups
Sophie Skelton Group
Thank you to everyone else who has donated, or stopped at our stalls at events
to say hello!
