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TRANSCRIPT
South Manchester Network
IN THIS ISSUE
Local Grants 2
Crohn’s and Colitis Awareness Week
3+4
Motown
Thank You Ava
WALK IT
Well Done Emma!
Dates For Your Diary
Social Meet Ups
Patient Education
Thank You
Contacts
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Spring 2019
WELCOME TO OUR SPRING 2019 NEWSLETTER
Thank you for taking time to read our latest newsletter. You will find more information here on what we have been up to for the last six months. 2018 was a fantastic year for the Network, which saw us raise funds and awareness across the area, hold more social meet ups, and help improve services for patients with Crohn’s and Colitis through local grants to hospitals. We have already had a great start to 2019, with new faces joining us, and more
plans in place for the months ahead.
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 to the lives of people living with Crohn’s and Colitis. It is simple and rewarding to get involved. Whatever interests, experience or skills you have, there are many ways to volunteer your time! There is more information on volunteering here: https://www.crohnsandcolitis.org.uk/get-involved
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 Crohn’s Disease and Ulcerative
Colitis.
Crohn’s & Colitis UK South Manchester Network Newsletter Newsletter
Page 2
LOCAL GRANTS
This year we have approved funding for places for two IBD nurses from Wythenshawe Hospital at the annual British Gastroenterology conference, which is being held in Glasgow this year. They would not otherwise have been able to go, but will now gain useful knowledge they can feed back locally.
We were also able to donate £450 towards the Family Network’s Activity Day at Chill Factore in December, which was attended by dozens of families from Manchester, and several who had travelled from across the country to be part of the event.
Our volunteers also helped out on the day with crafts and the snow activities.
The feedback from those who attended was fantastic, with many children and adults saying that they really appreciated the opportunity to be able to socialize with other people in a similar situation to them.
We have also given grants to several local hospitals, in order to buy Network banners. This is to make patients aware of their local Network, as we think it is very important for people with Crohn’s and Colitis to know that they are not alone.
We are delighted to tell you that a £10,000 local grant donated by the South Manchester Network to Wythenshawe Hospital has helped fund a psychological support staff member, who is now in post. They will be able to help patients struggling with their diagnosis of Crohn’s or Colitis, and psychological consequences from their surgery and medications. It is hoped the data from this pioneering pilot project will support a business case for the future.
Dr Paul Knight and IBD nurses receiving the £10,000 donation from South Manchester Network volunteers Andrea Macnab and Emma
Greenwood
IBD Specialist Nurse Rachel Campbell receiving the Network banner for Stepping Hill Hospital in
Stockport from volunteer David Rigby
Crohn’s & Colitis UK South Manchester Network Newsletter Newsletter
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CROHN’S AND COLITIS AWARENESS WEEK DECEMBER 2018
By Emma Greenwood
We had such busy week! My main memory of writing up the events we organised are that we talked lots, met lots of lovely people, shared stores, raised awareness, ate cake and gave out lots of leaflets!
The week began with an awareness stand in the very busy Manchester Royal Infirmary clinic. We enjoyed meeting lots of new faces and got approached by a lot of members of staff wanting to know more about Crohn’s Disease and Ulcerative Colitis, and the charity.
Emma and Dave with staff at Wythenshawe Hospital, where they had specially made Crohn’s and Colitis
topped cakes
Our next event was at Wythenshawe Hospital, where we were met by a very enthusiastic team in outpatients with the ring leader being Joanne the IBD nurse! They all wore their Crohn’s & Colitis UK t-shirts with great pride, and any member of staff that moved was caught by Joanne to wear purple awareness tops for their clinic. She also arranged for some amazing cupcakes to sell and we had another lovely afternoon giving out information and selling/eating cake.
Next was Stockport…wow! Rachel the IBD nurse and team had the event well organised and prepared for every cake and biscuit need. She ran her cake stall which included a master piece which was raffled off! We ran our modest awareness stand alongside her, and met some really friendly and interesting people.
Jenny with Bez the bear at Stepping Hill Hospital, Rachel at the clinic awareness, and Rachel’s amazing cake!
Crohn’s & Colitis UK South Manchester Network Newsletter Newsletter
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CROHN’S AND COLITIS AWARENESS WEEK DECEMBER 2018
Then the finale …… MACCLESFIELD!!! CAKE CAKE CAKE!!! MACCLESFIELD KNOWS HOW TO BAKE AND CHAT!! Amazing team! They ran the cake sales of all cake sales and sold out! Our awareness stand was well fueled by a sugar high. We even did a radio interview for a local student radio station while we were there!
While we were there the team handed over a cheque for an amazing £1,640 – the result of two bake sales, and a sponsored sky dive by IBD nurse Sammy!!
Thank you so much to all the hospitals for their hardwork, time, enthusiasm and friendliness during awareness week. Some of the staff were so dedicated they had even taken annual leave to run their awareness cake sales, which is amazing support. We raised hundreds of pounds by working together across the Manchester area hospitals, and raised a priceless amount of awareness.
A massive THANK YOU to everyone that helped me with the awareness stands, in particular Dave who has helped lug all the leaflets, tables and stands to all the events, his niece Sarah who crocheted some beautiful Christmas decorations for us to sell, and Andrea who sourced us the Christmas cards to sell.
What a great team effort for the South Manchester Network. THANK YOU!!
The Macclesfield IBD team at their cake sale, and handing over the cheque for £1,640!!
We would also like to thank Stockport Council for again illuminating the town hall
purple, and sharing a message on their social media pages, to help raise awareness.
Crohn’s & Colitis UK South Manchester Network Newsletter Newsletter
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MOTOWN
A Macclesfield Hospital patient, and Congleton resident, James Williams has organised two Motown and Northern Soul nights in Congleton this year, raising a fantastic £470 for the South Manchester Network!
People have travelled from as far as Blackburn to attend these events!
We would like to give a massive thank you to James, DJ Melvin Lloyd and his wife Margaret, as well as Alan and Linda for all their help.
We would also like to thank the Cygnet Club for allowing the use of their room
for free.
During the Family Day at Chill Factore we were delighted to receive a cheque on behalf of Crohn’s & Colitis UK from a local family.
Ava presented the £500 cheque to the South Manchester, and Family Networks - after raising lots of money by having her long hair cut to donate to the Princess Trust.
THANK YOU AVA
Crohn’s & Colitis UK South Manchester Network Newsletter Newsletter
Page 6
WALK IT is back in Manchester this year with brand new 5km and 10km routes.
Starting at the fun-filled event village in Sackville Gardens, take in the sights of Manchester on our exciting new routes.
By taking part in WALK IT, you will be helping to raise vital funds to find a cure and joining a community of thousands of people across the country walking across some of our major cities.
Whether you’re flaring, in remission or supporting a loved one, we know It Takes Guts to take part. Together, we can raise awareness and break the silence.
Challenge yourself to raise £100 or more - this could help pay for 2,000 people to get the information they need about Crohn's and Colitis.
FAQs How much is it to register? Adult registration is £14, and children (aged 5-16) registration is £7. Children under 5 are free. The registration fee is the same, regardless of the distance they have chosen to walk. Can I register on the day? Yes, there will be a registration tent in the charity village on the day. Can I bring my dog? Yes! Well-behaved dogs are more than welcome to come along- we ask that they are kept on their lead at all times. I’m having trouble with the form/I don’t have computer/I don’t have an email - can I still sign up? Of course. You can just get in touch with the Supporter Care Team via [email protected] or 01727 834485. Can I volunteer to help, rather than take part in the walk? Yes of course! There are lots of ways to get involved on the day; please have a look on the Crohn’s & Colitis UK website for some
further details and to sign up.
While some of the South Manchester volunteers will be walking along with some local IBD teams, we will also have a stand in the Event Village where you can find out more about what the Network does, and what events we having coming up in the
later part of the year.
Crohn’s & Colitis UK South Manchester Network Newsletter Newsletter
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DATES FOR YOUR DIARY
PATIENT EDUCATION PROGRAMME 12th May Novotel Manchester West, Worsley, M28 2YA Talks on Cancer and IBD, and Surgery and IBD http://www.crohnsandcolitis.org.uk/pep
WORLD IBD DAY 19th May
BAG PACK 25th May Sainsbury’s, Lloyd Street, Altrincham The Network will be raising funds with a bag pack at Sainsbury’s supermarket, and will also have an awareness and information stand
SOCIAL MEET UP 8th June Cafelito, Railway Road, SK1 3SW 10am - 1pm Join Network volunteers and others with Crohn’s and Colitis for a cuppa and a chat. All are welcome
WALK IT 15th June Sackville Gardens, Manchester, M1 3HB http://www.crohnsandcolitis.org.uk/walkit
CROHNS AND COLITIS AWARENESS WEEK 2019 1-7 December
WELL DONE EMMA!
Emma Raynes joined the Network in 2018.
She is passionate about several charities, but has taken part in many Network events, including the Sainsbury’s bag pack and Family Day at Chill Factore.
Ahead of undergoing stoma surgery, Emma set herself several physical challenges and targets to achieve – with the mindset that having Crohn’s Disease was not going to hold her back.
She has already achieved two half marathons and a 10k, and is signed up to complete two marathons and two ultras!
To raise awareness of the disease, and her plans, she was interviewed for an article that was both printed in her local newspaper, and published online.
Read the article here.
Crohn’s & Colitis UK South Manchester Network Newsletter Newsletter
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SOCIAL MEET UP
NORTH WEST PATIENT EDUCATION PROGRAMME
Our social meet ups at Cafelito in Stockport have gone from strength to strength, with around 20 people attending the sessions in January, March and April.
We have had really positive feedback from these events, where people living with Crohn’s or Colitis have had the chance to speak to others in the same position.
We will be back at Cafelito on Saturday 8th June, 10am-
1pm.
In December, we there was a sessions on ‘What is IBD and what should I expect from diagnosis and investigations?’ By Dr Salil Singh from the Royal Bolton Hospital, and ‘What is the role of diet in IBD?’ by Specialist Gastroenterology Dietitian Lisa Fell.
In February, there was a triple bill of ‘Drug treatments in IBD – what should I expect?’, by Consultant Gastroenterologist Dr Simon Campbell, ‘New treatments in IBD’ by (Dr Paul Collins from The Royal Liverpool and Broadgreen University Hospital NHS Trust, and ‘Alternative treatments in IBD’ by Lynn Gray, IBD Nurse Consultant at Wirral University Teaching Hospital NHS Foundation Trust.
The next session in May will focus on ‘Cancer and IBD - should I be concerned?’ with George Lipscomb, Consultant Physician and Gastroenterologist at the Royal Bolton Hospital, and ‘Surgery and IBD’ with Dr Jonathan Epstein, Consultant General and
Colorectal Surgeon from Salford Royal.
The North West Patient Education Programme, organised by Crohn’s and Colitis UK, has provided more opportunities to gain further insight and useful information into the conditions.
They also give people the chance to ask questions they may not have time to ask in their normal appointments.
Crohn’s & Colitis UK South Manchester Network Newsletter Newsletter
Page 9
CONTACT US
SOUTH MANCHESTER NETWORK Lead Volunteer: Jenny Cooper Helpline: 0300 222 5700* Website: crohnsandcolitis.org.uk/sm Email: [email protected]
CrohnsColitisSouthManchester
CrohnsColitisSM
@crohnscolitisuksouthmanchester Crohn’s and Colitis UK 1 Bishops Square, Hatfield Business Park, AL10 9NE [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.
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.
THANK YOU
The South Manchester Network is supported by many people and organisations, but we would especially like to thank: Sainsbury’s Altrincham Cafelito, Stockport Novotel, Worsley The Cygnet Club, Congleton Stockport Council The Metropolitan, Didsbury And a big THANK YOU to everyone else who has donated, or stopped at our
stalls at events to say hello!