Join our New Readers Panel

Would you like to help Crohn's and Colitis UK by becoming a member of our Readers Panel?

We are looking for people with IBD to read and comment on draft versions of information sheets and booklets from a reader’s point of view.

We would particularly like to hear from you if you have a full or part-time job and/or if you have tried counselling services for IBD-related problems.

If you are interested please contact Glenys Davies at publications@crohnsandcolitis.org.uk.

Giveacar for Crohn's and Colitis UK

This is a long shot... but, if you know of anyone with a car that's going to go for scrap, it could be put to better use...

Give some festive cheer this year and donate an old car through Giveacar with the proceeds going to Crohn's and Colitis UK.

A scrap car donation raises a minimum of £90 which could help us to provide much-needed support through our helplines.

Simply call 0207 736 42 42 or visit the Giveacar website to arrange a free collection.

They take cars of any age or value!

Merry Christmas One and All

Just a quick festive note to say thank you to all our readers and subscribers.

We've had a fantastic year in 2013, raising awareness of Inflammatory Bowel Disease amongst the general public - with a big media campaign launched in May by X Factor and Big Brother star Rylan Clark (whose mum has Crohn's) and Crohn's and Colitis UK media volunteer Amber Gamble on Sky Sunrise and 150 radio stations across the UK.

We have seen a sharp increase in visitors to the Me and IBD main website, which hopefully means we've been successful in encouraging the newly diagnosed IBDers (a staggering 10,000 young people a year) to seek support and information from Crohn's and Colitis UK.

We hope that you all have a wonderful Christmas, wherever you are in the world (we have a lot of overseas visitors). Bring good cheer to you and yours.

Red Hot Raffle winners announced!

Taking place on Thursday 12 December, the raffle managed to raised almost £61,000 to fund research into Crohn’s and Colitis.

The ticket which won our top prize was sold by Georgina Vrakettas-Knight who went all-out to support the raffle, selling an incredible 551 tickets.

We were delighted to welcome our Ambassador and TV personality Carrie Grant to draw this year's Red Hot for Research raffle.

Every ticket had an equal chance of winning, however some of our winners bought only a few tickets. We are grateful to everyone who bought or sold tickets.

The prize winners were:

• Read Georgina's fundraising story

Twins required for IBD research

Twins where one or both suffer from Crohn’s Disease or Ulcerative Colitis are needed for the IBD Nixon Twin and Multiplex UK Registry, a research database.

They are also interested to hear from "Multiplex" families where 3 or more members have been diagnosed with IBD.


The goal is to learn more about IBD to help develop new strategies for prevention, early diagnosis and management - Crohn’s and Colitis UK is supporting the work.

More information:

• Visit www.ibdtam.org.uk

• Email hannah.gordon@chelwest.nhs.uk

Joining the registry involves filling in a questionnaire about your health and allowing the research team to access your medical records.

This will also be featured in the next issue of NEWS.

Christmas Single Released, Profits for Crohn's and Colitis UK

The amazingly talented Emily Cotton has released an enchanting version of Silent Night called 'Sleep in

Peace'. A great addition to any Christmas song playlist and a snip at just 79p through iTunes.

This is a fantastic way to raise money and support an up and coming artist.

You can read more about Emily Cotton on her Facebook fan page HERE.

A massive thanks to Emily for releasing this to raise funds and awareness for Inflammatory Bowel Disease.

LINK TO ITUNES

New survey: Personal Independence Payment application experience

Crohn’s and Colitis UK is a member of the Disability Benefits Consortium, more than 50 charities calling for a fairer benefits system.

The consortium has just launched a new survey on the experiences of people applying for Personal Independence Payment (PIP) to help inform future campaigning work.

The survey has seven parts and should take about 20 minutes to complete.

In order for us to understand your experience of the whole process of applying for PIP, this survey is best completed once you have gone through your application for PIP and know the outcome.

Your views are incredibly important and will help us to tell the government about any problems or issues with the process that need to change.

• Complete the survey now

Office staff wear Christmas jumpers and raise funds for Save the Children

Following the success of our ‘Wear it Pink’ day in October, staff at Crohn’s and Colitis UK decided to get involved in Save the Children’s ‘Christmas Jumper Day’.


The festive jumpers have helped everyone get into the Christmas spirit, along with lunchtime Christmas carols, mulled wine (non-alcoholic of course), Christmas cupcakes and ginger cake.

While we’ve been having fun, we have also been able to support a charity who save children’s lives in some of the toughest parts of the world – from Syria to Liberia, Haiti to Bangladesh.

With huge thanks to everyone who took part and made Friday the 13^th a day worth getting out of bed for.

New publication: Tests and Investigations for IBD

A new information sheet: Tests and Investigations for IBD (Edition 4) is now available to download from our website.

Tests and Investigations for IBD (PDF)

This replaces the booklet Investigations for IBD - Edition 3, which is now out of date and being discontinued.

More information

Printed copies are available from the office - contact usif you would like one.

Visit our Information about IBD section to view all of our information sheets, guides and booklets.

Personal Voices

Personal voicesEvery patient's experience of Crohn's and Colitis is different. Our website and booklet tells the story of just some of the UK's 240,000 children, teenagers and adults who have the conditions.

Read about their personal experiences below or download our Personal voices booklet (PDF).

Catherine's story

Derek’s mum Catherine was diagnosed with Crohn’s at the age of 16 and, although she defied medical advice to have two children, she was almost always frail.

Chris's story

Chris was diagnosed with Crohn’s in 1983. Since then he has undergone surgery eight times and had numerous other stays in hospital.

Jennifer's story

It took 18 months of pain, sickness, bleeding, exhaustion and dramatic weight loss for 22 year-old Jennifer to be diagnosed with Crohn’s despite three visits to Accident and Emergency and even more visits to her GP.

Philip's story

Philip was a happy little soul from the moment he was born, and being diagnosed with Colitis at the age of 16 did nothing to change this.

Rob's story

There were two reasons why Rob’s experience of Crohn’s came as a shock to him.

Robyn's story

Robyn was only 8 years old when she was diagnosed with Colitis, becoming the third generation in her family to have the condition.

Ruth's story

As a working wife and mum of two, Ruth battled through periods of sickness and stomach pain for several years before being diagnosed with Crohn’s.

Sarah's story

“I felt very alone,” Sarah says, remembering her first two years of illness. “No one understood what I was going through.”

Sonya's story

Diagnosed with both Crohn’s and Colitis, Sonya’s experience has included multiple surgeries, more than 90 general anaesthetics, 37 blood transfusions, long periods of up to a year when her only food has come intravenously.

Do you find living with IBD exhausting? Would you like to share your story?

Crohn’s and Colitis UK is putting out a call for lots of member and supporter (recent) short stories (all ages) about how the symptom of fatigue/extreme tiredness has had a negative impact upon an individual’s ability to enjoy a normal social life, undertake study or stay in employment .

We will be looking to place some of these stories into regional press all around the UK during the Spring 2014, to raise awareness of Fatigue. These may also take the form of interviews.

70% of young people in 2007 when surveyed by the charity stated Fatigue” as their most noticeable symptom. As a result we won £500,000 from the Big Lottery Fund to investigate Fatigue further. This year, our Me and IBD survey of over 1,000 young people aged 16 – 29 indicated an even higher level of concern – even when not having a flare - 76% found it more of a problem than extreme pain or diarrhoea.

Our Fatigue project findings are due to be released in May/June 2014.

*This is for any age, so feel free to share with others.*

Please download the Fatigue Media Volunteer form and email  it back to us.

Still Looking for Christmas Presents?

MAD Sale - 50% off all jewellery, watches and cufflinks 

Using a limited time discount code, grab a festive bargain and help people with Crohn’s and Colitis as well.

M.A.D. (Make a Difference) is a jewellery store with a difference. They stock thousands of beautiful, affordable jewellery designs and sell them not to make a profit - but to change the world. Whenever you make a purchase from M.A.D. they pass 100% of the profit on to the charity of your choice.

50% OFF ALL ORDERS - Use the discount code: MADGOESMADValid from Friday 29th November until Monday 2nd December.

• Visit the M.A.D. jewellery website

One Week to Go - Christmas Cards

Send our Christmas Cards to your family, friends and colleagues, and not only will you be raising funds for our charity, you will also be raising awareness as each card is printed with our logo.

All cards come in packs of 10 and with prices starting from just £2 per pack (20p per card) they are great value too.

Designs include traditional scenes, jolly santas, the nativity and a merry little robin so there really is something for everyone.

Order before Monday 2nd December 2013. Stock is limited so please order early to avoid disappointment.

• Visit our Christmas Cards shop
• Download our Christmas Cards brochure (PDF)

They Want to Raise the Prescription Charge to £10

Prescription Charges Coalition response to Reform proposals to increase prescription charges

Proposals released today by think tank Reform, include increasing prescription charges to £10 an item and increasing the cost of the annual Prescription Prepayment Certificate to £120.

David Barker, Chief Executive of Crohn’s and Colitis UK, lead organisation for the Prescription Charges Coalition of 29 charities and professional organisations, concerned with the impact of prescription charges on people with long-term conditions, said:

“Prescription charges currently stand as a barrier between people with long-term conditions of working age and their essential medicines. Research shows that many are already struggling to pay for the medicine that will keep them well or even alive; they are being forced to make impossible decisions between paying for food, heating, rent or their medicines.

People with long-term conditions would be disproportionately affected by any increase in charges, which could have a disastrous impact on their quality of life and health outcomes, potentially resulting in significant knock-on costs to the NHS, employers and the benefits system. Current measures to protect those on low incomes are vastly inadequate. As many with a long-term condition have a reduced income, this highlights the lack of thinking behind these proposals.

The current system for prescription charges and exemptions was established in 1968 and is due for reform. However, any proposals need to be based on research of the full costs and consequences for these, often young people, who rely on medication on a daily basis throughout their lifetimes. It is clear from the evidence that already exists that increasing prescription charges is not the answer and would represent a critical additional burden for those who can ill-afford it.”

The Royal Pharmaceutical Society issued this response on their website and twitter feed.

We are very pleased to see that the British Medical Association remains opposed to charges and the Department of Health has restated their commitment to an NHS that is free at the point of use, with access based on need and focused on providing excellent care.

However, it is clear that current prescription charges already run counter to this. What are your thoughts? Do you get a Prepayment Certficate or pay as you go? How would this effect you?

Support for Young People

If you follow our blog and have visited our website Me and IBD, you'll know that the number of

young people getting diagnosed with Inflammatory Bowel Disease each year is a whopping 10,000 (that's out of 18,000 who will be diagnosed in total). Despite preconceptions, IBD is a young people's disease.

So we're reclaiming it! We're talking about it and sharing experiences. If you want to read real life stories, just do a search in the box (top left) for "Guest Blogger" and you'll be able to read all sorts of stories from all sorts of young people. They're raw and honest, funny and bittersweet. But they're all true and they're available for you to read.

If you have a problem that is niggling you, or a burning question and you should be able to find the information you're looking for on the Me and IBD website or the main website (which has lots of Information Sheets). 

                    If not, why not give us a ring?


We have a number of helpline services available to everyone (not just members).

The services are designed to provide information and support, regardless of your situation or background. These include:

• People who have recently been diagnosed with IBD and those living with the condition for a number of years

• Friends, relatives, partners and carers

• Young people and the parents of children who have IBD

• People who are looking for information about the condition and the impact that it has on day-to-day life

• Those who need emotional support

• Anyone who needs help with practical matters, such as finding out about, and applying for, disability benefits

You're never alone in this, we're here to help and support you wherever we can.

Your Local Group...

Each local group is run by an organising team of volunteers, and is funded entirely by local

fundraising. They provide the opportunity for anyone affected by IBD (for example patients, their families and friends) to meet other people who understand the challenges of living with the conditions, and can also support them to access information and support from the national charity. The activities vary from group to group, but can include:

• Groups hold meetings that can range from informal 'get-togethers' to meetings on specific subjects, such as diet, research etc.
• They carry out a wide range of activities that raise awareness in their communities, eg information stands and social events.

For a full list of the Group locations (there are lots!) please visit the Groups pages on our main website.

Plus you can download a PDF of exactly what the Groups can do for you here.

Give As You Shop

Check out our Me and IBD news pages to find out how to donate to Crohn's and Colitis UK whilst you do

your Christmas shopping (or even your supermarket shop)... yes, that's right. And it doesn't cost you any more!

FIND OUT MORE!

Leeds Lord Mayor's Appeal Raises Over £38k

The formal cheque handover took place on Monday 4 November and an amazing £38,165.88 was received from the Leeds Lord Mayor's appeal.


A huge thank you needs to be given to Councillor Ann Castle, former Lord Mayor, for choosing Crohn’s and Colitis UK to benefit from her year in office.

A special mention must also be given to the Leeds and District Group who worked so hard on this project and managed to recruit so many volunteers throughout the year.

Part of the money raised has gone towards IBD services at Leeds Royal infirmary as well as the purchase of two capsule endoscopy machines.

L>R Suzi Clark (Director of Marketing and Fundraising), Councillor Ann Castle (former Lord Mayor), Alex Demain (Marketing and Fundraising), Graham Bell (Leeds Group Chairman) and Dr John Hamlin (Gastroenterologist).

Related Links

• 

• Leeds and District group