February 2019 Issue 56 Northern Ireland...

Crohn’s and Colitis UK Northern Ireland Network

February 2019 Issue 56

IN THIS ISSUE

Northern Ireland Network

2 & 3 Fundraising & Donations

4 Family Day & Competition

5 Patient Comfort

Crohn’s & Colitis Week

Volunteering

6 Get-togethers

7 JustGiving & Publications

8 Contact details

EDITOR’S NOTES I have been sourcing material for and compiling our newslet-ters since 2002, and, with one exception, Peri took care of the ‘Notes from the Chair’. As I write, I can imagine her starting off by wishing everyone a Hap-py New Year, and so, on behalf of the Organising Team, I wish you a happy and healthy 2019. In this edition you will read about the tremendous fundrais-ing that our members and friends have done over the last six months. Thank you to every-one who has donated, whether your donation has been large or small. Following on from our Family Day at We Are Vertigo, our chil-dren and young people up to and including the age of 18 can enter a competition to win a voucher for We are Vertigo. (Page 4) We hope to hold a medical/education meeting in Enniskil-len in May, and also an event suitable for all our members in June. There will be more details about these in due course. We recognise that not everyone uses social media, so we en-courage you to check our web-site for details about events such as coffee get-togethers.

Monday 25th February: Educa-tion meeting, Ballymena 19th & 23rd March: Get-togethers in Bangor and Derry-Londonderry (Details on page 6)

This will be our first meeting in Ballymena, and we look

forward to meeting many

new members and friends

who haven’t been able to

attend previous events.

DATES FOR YOUR DIARY

BALLYMENA MEETING

Date: Monday 25 February

Venue: Ballymena North Busi-

ness & Recreation Centre,

120 Cushendall Road

Time: Refreshments from

7:30

AGM and meeting: 8:00

Speaker: David Cassidy, Pa-

tient & Client Council

‘Your voice in health and so-

cial care’

This is YOUR newsletter. What would you like to see in it? What stories would you like to hear about or share with our members? Your feedback will be wel-come, so please get in touch by e-mail or social media, details of which can be found on the back page.

If you are considering donating to our Northern Ireland Net-work through JustGiving, please read the information from our national office on page 7 care-fully. You can now find us on Insta-gram. (See back page.) As we go to print we have just received confirmation that our application for a Radio Ulster/Radio Foyle Appeal has been successful, and this should be aired during April. Audrey


Michael Williams ran the Belfast

City Half Marathon, raising

£1,031 through direct donations

and JustGiving. He and his fian-

cée, member Erin Scott, made a

presentation to Una and Zoe at

our last meeting in Lisburn.

Louise Wilson and Rebecca Hall

ran the Walled City Marathon on

behalf of their friend, Jill Wilson,

donating £788.05 to our Net-

work, and they presented their

cheque to Una and Zoe at our

last meeting.

FUNDRAISING & DONATIONS

Donations from collecting boxes

£161.00: Bowes Bros, Omagh £50.00 & £60.00: Hunt’s Tradi-tional Fish and Chips, Lambeg £18.65: The Frying Squad, Bal-loo Road, Bangor

OTHER DONATIONS £105.63: Awareness days in the Ulster and City Hospitals during Crohn’s & Colitis Week £50.00: Lisbellaw Daughters of William WLOL £30.00: Family Day donations £510.00: Lisnagarvey Ladies’ Bowling Club (nominated us as their charity of the year) £60.00: Ian Kelly and his col-leagues at NIFPO in lieu of buy-ing each other Christmas pre-sents

Many thanks to Lorraine Gillan and family for their donation of £70 and this super photo of them wearing their Christmas jumpers. Lorraine didn’t tell us who won the competition for the best jumper.

Shannon Bingham ran the Bel-fast City Half Marathon, raising £755 through her JustGiving page and Gift Aid donations.


Mother and daughter, Breege and Ciara Clarke, participated in the Dublin Mini Marathon, rais-ing £1,217.37. They presented their cheque to Rosemary during our coffee get-together in the Killyhevlin Hotel.

We send our thanks, apprecia-tion and love to the Gillespie family and friends of Peri for donations of £2,055 in her memory. Donors included Kirkistown Area responder TEC services, WNR Electrical Ltd and the Brownie Guide Company where Peri was a Rainbows’ leader. A further £275 was sent directly to Crohn’s & Colitis UK from Ul-ster Rugby Supporters’ Club.

You may recognise Erin who has featured in a different guise elsewhere in the newsletter. Erin, who is ground crew at George Best Belfast City Airport, joined Audrey for the launch of their accessible toilet signage and an Accessibility Forum at the airport. In 2014 the Civil Aviation Au-thority issued guidance requir-ing airports to consult with pas-sengers with a disability or re-duced mobility. The aim of the Forum is ‘to pro-vide a forum for users of the Airport’s Special Assistance ser-vices or their representatives to share their knowledge and expe-riences of services at the air-port’. The first objective is ‘to be-come more aware of the specif-ic needs of air passengers with a disability or reduced mobility’. If you have experienced any dif-ficulties at the City Airport, please let us know so that your concerns can be fed back to the airport. This was followed up with a ‘walk through’ at the end of January, and it is anticipated that regular forums will be con-vened.

Let’s Talk Crohn’s & Colitis NI (LTCCNI) has provided a sup-port service within NI for the last 5 years, but it is with re-gret that they have had to dis-solve the charity. They have very kindly donated £7,362 to the NI Network, with the stipu-lation that the money must re-main in NI for the benefit of those affected by Crohn’s and Colitis here. We are very grate-ful for this donation and thank the Trustees for their generosi-ty.

Some of those who attended the get-together

Get-together at Killyhevlin

On a beautiful November morn-ing, Rosemary and Audrey trav-elled to The Killyhevlin Hotel, Enniskillen, to meet some of our members and friends there. Good conversations were held over coffee and it was decided that we should hold a Saturday meeting to accommodate those in the South West who feel iso-lated at times. This is in the planning stage.

Donations in memory of Peri


COMPETITION TIME!!!

Following our Family Day event at We Are Vertigo, we are excited to announce that we have 3x £10 gift vouchers to give away to our lucky members!

In line with our Family Day ethos, the competition is aimed at our younger members (under 18s) and is open to all children and young people living with IBD here in NI. To enter the competition, we want you to design an awareness poster for IBD that we can share on our social media ahead of World IBD Day this May. Your poster must represent IBD and our local group, here in NI. It can be any design and theme you choose! The 3 lucky winners will be announced via social media. So, get designing!! We look forward to seeing your entries! Terms & Conditions Entries must be sent via e-mail to

[email protected] Under 18s MUST have parental permission to enter the com-

petition. Please provide the parent or guardian’s name, tele-phone number and e-mail address when submitting the com-petition entry.

Closing date for all entries is Thursday 28th February 2019. Any entries received after this date will not be considered for the competition.

Winners will be announced via social media on Saturday 16th March 2019.

Winners will be contacted via e-mail to receive their £10 voucher for use at We Are Vertigo. Terms of usage are stated on the voucher and must be adhered to. Any issues with the voucher should be taken up with We Are Vertigo.

Crohn's and Colitis UK NI Network cannot accept any respon-sibility for misuse of vouchers, or exchange the vouchers for a cash or alternative prize.

FAMILY DAY at We Are Vertigo

We enjoyed a day of fun at We Are Vertigo at the beginning of December. In addition to the children and young people, a number of parents and one or two of the OT took part in the trampolining, climbing wall and high and low ropes. There were opportunities for the children to mingle and for parents to exchange stories. It was great to spend the day with some families who have attended previous events, and to meet new families whom we hadn’t met previously.

Parents, are you aware that our national office can provide emo-tional and confidential support through the Parent to Parent help-line? This is available for parents/carers of children up to the age of 25. Telephone 0300 222 5700 to arrange a phone call.


We would like to thank our IBD Nurse specialists, Gayle, for ar-ranging for us to have an aware-ness stand in the Ulster Hospi-tal, and Noreen, for organising a location in the City Hospital dur-ing Crohn’s and Colitis Week in December.

PATIENT COMFORT

In our last newsletter we re-ported on the benefits of Sur-face 4 devices for IBD staff in Belfast Trust which were pur-chased with a donation from our Northern Ireland Network. Here we see Sister Charlotte Wright with patient James McAuley receiving his infusion in a recliner which Altnagelvin (Western Trust) purchased with their donation.

CROHN’S & COLITIS WEEK, DECEMBER 2018

Above: Philip and Audrey and Below: Hazel, in the Ulster Hos-pital, Dundonald

IBD Nurse, Gayle, Ulster Hospital

Éirinn at our stand in the City Hospital We are grateful to Philip, Hazel and Éirinn for giving up some time to support our awareness stands.

If you are looking for a flexible volunteering role and you are inter-ested in helping to run awareness stands in local hospitals or shop-ping centres, please get in touch with the Volunteering Team at [email protected] or visit www.crohnsandcolitis.org.uk/volunteering to find out more.

VOLUNTEERING

Campaign Update

Make the Invisible Visible

Have you completed the survey yet? If you are living with Crohn’s or Colitis, and have faced discrim-ination or challenge when using toilet facilities, Crohn’s & Coli-tis UK wants to hear from you. Please complete the short online survey which you can find on the Crohn’s & Colitis UK website if it hasn’t already been sent to you by e-mail.


Get-togethers

The Red Berry Coffee House,

on the junction of Main

Street and Queen’s Parade, Bangor, will be the venue for

our get-together on Tuesday,

19th March.

This is aimed primarily at

members and friends in post-codes BT18 — BT23. We shall

be in the upstairs area from

7:30—9:00, so come along

and have a coffee, tea or

cold drink.

If you could help host this get

-together, please contact us

on social media or by e-mail.

It is important to have some-

one available to buy the drinks while others chat to

those attending.

BANGOR DERRY-LONDONDERRY

JAMM Coffee Shop in the

Richmond Centre, Derry-

Londonderry, will be the ven-ue for our get-together on

Saturday, 23rd March.

Given the large area to cov-

er, including Coleraine, Lima-vady, Dungiven, Strabane,

Omagh and the city itself,

you will have your choice of

time to drop in for refresh-

ments.

11:30—1:00 or

2:30—4:00

As mentioned in the notice

about the Bangor get-

together, perhaps some of you in the area whom we

have got to know over the

years would be available to

help at one or other of the

time-slots. If so, please get in touch by

social media or e-mail.

Since our first get-together

in 2016 we have covered 59

postcode areas, but acknowledge that there are

still many areas that we have

not yet reached.

The purpose of such social gatherings is to give mem-

bers and non-members alike

the opportunity to meet oth-

ers with IBD. Everyone is

welcome to attend, including family and friends.

The hosts will be wearing

their purple Crohn’s & Colitis

UK t-shirts, and should be

easily spotted.

It would be helpful if you

could give some indication

that you hope to attend, but

given the nature of IBD, you might not know until you’re

due to leave home whether

or not you will feel like leav-

ing the house.

We would encourage you to

keep an eye on social media

nearer the date of your pre-

ferred venue, in case some

changes have to be made.

We look forward to seeing

some ‘old’ friends, and

meeting others for the first

time.

We shall endeavour to host more get-togethers in other lo-cations around the country.


PUBLICATIONS

The following information sheets were updated or newly created in 2018. These can be downloaded online. Go to www.crohnsandcolitis.org.uk and type ‘publications’ into the search box.

There are many more information sheets available on the website, plus booklets on various topics, such as Food and IBD, Ulcerative Colitis—Your Guide, Crohn’s Disease—Your Guide, Living with IBD, My Crohn’s and Colitis Care, and a number of other booklets. Your IBD nurse may have some of these.

We are so appreciative that many of you fundraise for us here in NI via JustGiving. Due to policy changes within the national office, you MUST speci-fy on set-up of your page that the money raised will be donat-ed to us here in NI, and inform the fundraising team of this on set-up of your page, otherwise all money raised will be allocat-ed to the national office. No exceptions. We would also ask that you let us here in NI know about your fundraising, to give us the op-portunity to promote your event and thank you for your hard work. Contact us for more infor-mation, or use the link on the Crohn’s & Colitis UK website: https://www.crohnsandcolitis.org.uk/get-involved/fundraising/organise-your-own-event To ensure that the NI Network receives donations made through the page, the following steps must be followed: • To inform donors where their money is going, the following text must be included on the page, specifying which Network is being supported by the funds. “This page is raising money in aid of the Crohn's & Colitis UK - Northern Ireland Local Network. All money received by Crohn’s & Colitis UK through this page will be passed onto the team and used by them locally to continue their work.” • You must give your page an appropriate close date, as mon-ey will only be transferred to the NI Network when the page closes. • You must notify the Fundrais-ing Team at [email protected] with the link to your page as soon as it goes live and specify the close date which has been entered and that the money raised should be allocated to the NI Local Network.

JUSTGIVING

• An automated message is sent out to anyone who donates via the JustGiving website and this should be amended to include a personal thank you, if you wish. The below can be used, if desired. “Thank you for donating to this page and supporting the work of the Crohn’s & Colitis UK, North-ern Ireland Local Network. Your money will make a huge differ-ence to the local community and allow us to continue raising

awareness, providing infor-mation and support and strengthening our hospital links to improve patient education and care throughout the area. To find out more about what we do, please find us on the website.” **Please note that if the pur-pose of the page is not made clear as in the above steps, the money will be transferred to national funds as per the de-fault process.


CONTACT US Northern Ireland Network Chairperson: Audrey Derby

Website: www.crohnsandcolitis.org.uk/ni Email: [email protected]

Crohn’s and Colitis UK

First Floor, Helios Court, 1 Bishop Square,

Hatfield Business Park, Hatfield, Herts, 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*

Monday, Tuesday, Wednesday and Friday - 9 am to 5 pm Thursday - 9 am to 1 pm

Email: [email protected]

Web Chat (Live Online): see the Crohn’s & Colitis UK 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 Northern Ireland Network has made every reasonable effort to ensure the content of this newsletter is accurate, but accepts no responsibility for any errors or omissions. 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.

NETWORK ORGANISING TEAM MEMBERS

Treasurer: Patricia Henderson

Social Media: Ruth Kyle, Zoe McAteer

Kim Montgomery

Valerie Boyd Steven Kennedy Rosemary Patterson Brian Ritchie Una Smart John Collins, MD FRCP

Medical Advisor: Dr G Turner MD FRCP

IBD Nurse Specialist: Evelyn Warwick

/CrohnsColitisNI @CrohnsColitisNI

IBD NURSE SPECIALISTS

Mary Kane, Northern Trust (Causeway)

Jacqueline Kearns, Northern Trust (Antrim)

Evelyn Warwick, Belfast Trust

Noreen Kennedy, Belfast Trust

Caroline Collins, Belfast Trust

Ruth Hall, Southern Trust (Craigavon)

Stephanie Dunn, Western Trust (Altnagelvin)

Gayle Martin, South Eastern Trust (Dundonald) Tracy Close, paediatric nurse specialist, Belfast Trust (Royal Belfast Hospital for Sick Children)

Tracy Hill, South West Acute Hospital (Enniskillen)

Newsletter printed by

ILEOSTOMY & INTERNAL POUCH SUPPORT GROUP

e-mail: [email protected] www.iasupport.org

Welcome to all new members. We do not receive membership updates, so we are unable to send new members a ‘welcome’ e-mail.

@CrohnsandColitisNI

February 2019 Issue 56 Northern Ireland...

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