‘Cruel and degrading’ - Verdict on Treatment Received by Crohn’s Sufferer

Jobsworths at a Norwich job centre have been slammed over their 'cruel and degrading' treatment of an ill woman who was refused use of the toilet.

Nicola Martin, 32, who has Crohn’s disease, carries a ‘Can’t Wait’ card because the condition means she might need to “use the toilet facilities urgently”.

Despite this, staff at the Kiln House Jobcentre in Pottergate told the mother-of-two she could not use their toilet because it was ‘against job centre policy’...

Her local MP, Richard Bacon (no, not the TV presenter!), South Norfolk MP described the actions as 'cruel and degrading' and has been in contact with the Secretary of State for Work and Pensions, Iain Duncan Smith to look into the matter.

You can read the full story here.

To find out more about the Crohn's and Colitis UK's 'Can't Wait' card click here.

New Public Toilet Website Launched

Ever been caught short whilst out and about? It's happened to the best of us. The first thing most of us probably check out when we go somewhere is where the nearest loos are. Have you ever tried to look up where the nearest toilets are before you go somewhere? Well now, under a newly launched scheme you can... in limited areas as it's so new.

The areas covered by the Great British Public Toilet Map include parts of London, Manchester, Brighton, Hove, Lichfield, Lincoln and Salford.

It was developed, oddly enough by the Royal College of Art Helen Hamlyn Centre for Design - which is probably why it looks so pretty! But who cares who did it - let's hope they extend it to the rest of the world!

You can find it here.

How to Organise a Fundraising Event

Things to consider if you want to organise a really successful event to fundraise for charity - from Crohn's and Colitis UK.

Fun! Your event should be fun for everyone, not least you so think about you talents, interests and the time you have to spare. You may be bursting with ideas, but if not click here to take a look at our ideas for fundraising at:

• Home
• School, college or university
• Work
• Through Sport and challenges

Who can help? Family? Friends? Colleagues? Sharing ideas can make your event better. Sharing tasks can make it easier, as well as more enjoyable.

Where can you hold it? At home? At work? At the gym, pub, local community centre...?

When should you hold it? Think about convenience for you, your helpers and supporters. Avoid clashes with other events, locally and nationally.

Getting organised. Allow plenty of time for recruiting helpers and other support, finding a venue, arranging publicity, printing and selling tickets, inviting the press, organising catering and so on. Our sample timetable and budget may give you some ideas for planning. You can read it clicking here.

Check whether any licence or special permission is needed. Read Keeping it legal and keeping it safe by clicking here.

Handling money. Keep a note of money spent and hold onto receipts. Keep a note of money raised through ticket sales, donations, sponsorship etc. Ensure that helpers know what to do with money. Do you need a float? Who will organise it? How will you keep money safe? Who will bank it? For your own protection, it's prudent to have witnesses to money handling and recording. Money raised can be sent into us by cheque using the remittance form availablehere. Alternatively, call us if you prefer to make a bank transfer or pay by debit/credit card.

Make sure everyone knows what a great cause you are raising money for. We have a poster for you to display or email to show supporters the difference the money raised will make. You can download it by clicking here.

Make the money you raise s-t-r-e-t-c-h further Read our handy tips by clicking here.

Get your fundraising noticed. Read our publicity tips by clicking here.

Keep it legal and keep it safe. Read our tips by clicking here.

Say thank you. If it isn’t feasible to thank everyone face to face or by telephone or email, consider a poster or letter to your local paper.

Happy to organise your own event? Fantastic! If not perhaps you could:

• Think about joining someone else’s event - sponsored walk, run, cycle ride, skydive (eek!), overseas challenge, car boot or eBay sale, stall at a Christmas fair….
• Encourage someone else to donate or fundraise - Rotary and Lions Clubs, Masonic Lodges, Golf Clubs, WI Groups, Inner Wheel Associations, dance schools , sports clubs, religious, social and community groups ...We’ll be happy to support you with information.
• Introduce us to your employer.
• Encourage local shops and businesses to take our collection boxes.
• Introduce us to a Trust or Foundation.

Call: 01727 734485

Email: fundraising@crohnsandcolitis.org.uk

Great Tips for Fundraising

If you're thinking of doing fund raising for us (or indeed anyone) then these tips will be really handy. Rylan Clark (yes, him off the telly - X Factor and Big Brother) has been doing just that this year on Celebrity Family Fortunes and Tipping Point. 

While your fundraising activities might not include a stint on ITV (although if it does - kudos!!), the same principles apply:

Gift Aid - Increase the value of donations (including sponsorship) by 25p in every £1. Find out how by clicking here.

Matched giving – Some employers will match the money you raise. Others may donate or support you in other ways especially if you can thank them publicly - a room for your event, catering supplies, printing, stationery, or raffle prizes such as a day off, a late start or an early finish. Some employers are connected to grant-making trusts or foundations.

Donations of money, services or gifts in kind – Could friends, family, local shops and businesses donate prizes or supplies, or sponsor aspects of your event? We can provide an endorsement letter to show your fundraising is genuine and also information for potential donors. Some businesses may buy advertising space in your programme.

Local sources of funds – Many areas have grant-making trusts and foundations, and some county councillors have locality budgets for charitable donations. Stress the difference your event will make - increased confidence for your volunteer helpers, for instance.

Online fundraising and social media – Reach more donors, keep them interested and make life easier by:

• Creating an online donations page. As donors pay at the time of sponsorship, there’s no need to chase them afterwards (phew!). We can still provide a paper sponsor form for those who do not like to give online. You can set up an online donations page at www.justgiving.com.
• Using email to send a link to your online donations page to people all over the world.
• Using our downloadable information on the difference the money you raise will make.
• Keeping things interesting by updating your supporters on how things are going through email or a blog.
• Using social media to spread news and updates. Connect to our fundraising facebook page and twitter feed.

Fundraise with us on Facebook - click here

Fundraise with us on Twitter - click here

Get your fundraising noticed – you can order posters by clicking here and read our publicity tips and sample press release by clicking here. Publicity raises much-needed awareness as well as funds.

Show your supporters what a great cause you are fundraising for. Click here to download information you can use as a poster or email attachment.

Guess to Give - keep things lively with a sweepstake. How quickly will you run the marathon? How many stitches will you knit? Supporters pay £3. to enter with 50p from each guess going into a prize fund for the winner and £2.00-£2.50 coming to charity. Visit www.guess2give.com.

Side events - you may be fundraising for a special event but perhaps you could reach your target more easily by holding a side event - cake sale, raffle, quiz, sale of DVDs...

Ask people for help – could they help with your event or hold an event of their own to boost your fundraising?

Interested in organising a fundraising event? Read our information by clicking here.

Keeping it legal and keeping it safe – Read our tips by clicking here.

Guess Who Popped Into the Office??

Premiership footballer and Scotland international player Russell Martin took us all by surprise recently and popped into the Crohn’s and Colitis UK office.


Russell became a Crohn's and Colitis UK Champion in 2012 for our IBD: Sport and Fitness campaign and has recorded a video for us detailing his diagnosis and how he lives with the challenges of IBD - Russell has Ulcerative Colitis like fellow Scottish International and Manchester United footballer Darren Fletcher.



Read the full story here on the main Crohn's and Colitis UK website. 

You can find out more about Russell's biography and story at the IBD: Sport and Fitness website. Plus really interesting statistics about sport and fitness with Inflammatory Bowel Disease.

Fancy Being A Fundraiser for Crohn's and Colitis UK?

Every penny donated or raised helps to make a real difference to people’s lives. Whether you give £1 or £1,000,000 we welcome your support.

Fundraising comes in all shapes and sizes to suit all shapes and sizes of people – young, old or somewhere in the middle. From simple donations through runs, challenges to wacky events  there’s something for everyone.

We’re here to help with ideas, fundraising packs, t-shirts, running vests, collecting tins, cheerleader packs and a whole lot more. 

We have ideas for ways you can raise money at your school/college/university - just click here to go through to our main Fundraising Pages where you'll find tonnes of useful information and tips.

Every little helps, as you can see from what each amount can do:

£5 - Help us to reach out to the family of a newly-diagnosed child through our Family Information Pack.

£10 - 10 patients could benefit and feel more informed about their condition through our booklet, Understanding Crohn’s and Colitis.

£20 - A person in distress could receive support from our helplines.

£50 - Craft material for a Family Fun Day to help children feel normal again.

£100 - Help pay for equipment for a research project.

£300 - A Personal Grant for someone in need.

£1,000 or more - Contribution towards a research project.

Gift AidIncrease the value of your donation by 25p for every pound donated at no extra cost to you.Find out more about Gift Aid.

For more information, call 01727 734485 or email fundraising@crohnsandcolitis.org.uk.

Guest Writer Harvey - Conclusions

Me, Myself and My Immune System: A brief timeline of my love affair with Crohn’s Disease.

Harvey Hancock

Part Four

Fast forward 2 years. My trip to university has been delayed, for reasons obvious to you. I now have to stay behind in 6^th form and do an extra year while all my friends leave to go on their own university adventures. I’ll still get there, eventually. But right now I am being bullied by kids two years younger than me because I just won’t leave school. School is the last place I want to be, and my attendance drops to 50%. I’m not ill, I just refuse to go in. The work is too easy and there is nobody waiting there for me – at least nobody who wants to put a smile on my face. I so want to escape the grapples of school so it’s time to don my armour and pick up my shield. I’ll shut myself off. I’ll deflect their words and jibes. I’ll do what must be done to get on with my life. I’m going to make a success of myself and nothing will stop me. Crohn’s can do one. And those snot-nosed wotsits, surrounded by jeering friends, they’re not worthy of my time or emotion. I’ll write this year off. That’s what I’ll do. I’ll just do my work and keep my head down. And look forward. The promise of university is all I have to keep me going.

Fast forward three years. I’m in the second year of university and I have an exam in an hour. I’m not going to pass it. I go to see my tutor before it and she says “you look like crap, man.” I agree, but say that, while I’m on campus, I may as well give it a go. In the exam room my friend says that perhaps I should just go to the hospital instead. I soldier on. I finish with over an hour to spare, having written under two pages of words for two whole essays. I go home, cry, and sleep. What a waste of time.

Fast forward three weeks. By all rights, I should have failed this exam. But somehow I managed to pass. Many people will be celebrating their good grades but my 49% ranks as one of the best marks I’ve ever received. Screw you, Crohn’s disease. I. Will. Not. Fail.

Fast forward a year. University is over. My friends have left, and I’m on my own. To pass

my time I write a story about what it is like to have Crohn’s disease, and it is nearing its end. Though this piece is a timeline of my illnesses I actually conclude it by realising that this section of my life, though defining, does not define me. I have been called “tubey”, “sick boy”, “skiver” and all manner of names and missed a fair chunk of my education. I struggle with energy levels on a day-to-day basis and I can’t play sport as much as I’d like. But I am funny. I am kind. I am intelligent. I’m a good singer. I’m generous. I’m loved. I’m not too hard on the eyes (at least that’s what people say). I am not dramatic. I don’t get scared easily. I am honest and thoughtful. All of these things, self-aggrandized or not, define me far more than a scarred liver or a malfunctioning bowel ever will.

I live with this every day. And it really isn’t a big deal. It’s just Crohn’s disease, you know? And that makes me fantastically lucky - to only have Crohn’s Disease is a blessing,

all things considered. By recounting some of the negative aspects of my illness all I have done is emphasised the fact that my life has been full of laughter, friendship and success. Take a look at all those gaps I fast-forwarded through: my first kiss, my first girlfriend, passing my driving test, getting into university, late-night adventures and long summer holidays. Memories of all kinds were put to one side to give an honest account of what it’s like to be “ill”. But that never was and never will be all I am. I am greater than the sum of my parts, even if some of those parts sometimes go on strike. So don’t feel sorry for me, and don’t you dare feel sorry for yourself. There’s still plenty to look forward to: a career, love, a family and many unexpected adventures, so let’s all have a bloody good laugh. It’s only IBD, after all.

For information for Students at Uni with IBD click here.
For information for Universities click here.

Want to Have Your Say in Important Matters? Become a Campaigner!

Crohn’s and Colitis UK campaigns actively at both national and local level and in every country of the UK to raise awareness of Inflammatory Bowel Disease (IBD) among decision makers and improve services for everyone affected by the condition.

Our campaigning work has delivered real success, including the development of clinical standards for the treatment of IBD, a debate on the disease in the Houses of Parliament and the leadership of the Prescription Charges Campaign.

Members of the Prescription Charges Coalition

However, our work will be at its most effective with your support, whether that’s by signing a petition, registering to receive our campaign e-mails, or getting in touch to see how you can best support our campaigns.

Standards and services for the treatment of IBD have come a long way thanks to our hard work, but there is still much more to do. From protecting vital health services, to campaigning to save local public toilets from closure and making the benefits system fairer, we are pushing for the changes that people with IBD need.

"If you think you're too small to have an impact, try going to bed with a mosquito in the room" - Anita Roddick

• To find out more about what campaigning for Crohn's and Colitis UK involves, click here.
• To see what specific campaigns Crohn's and Colitis UK are working on now, click here.

Guest Writer Harvey - The Difficult Kids

Me, Myself and My Immune System: A brief timeline of my love affair with Crohn’s Disease.

Harvey Hancock

Part THREE

I have come home from school crying again. Gary H keeps puffing his cheeks out to imitate my swollen face and he is doing it every time he sees me. Today he put me in a headlock in the playground and wouldn’t let me out of it until a dinner lady dragged him off me. He says, “I know you want me to apologise but I’m not going to.” to the dinner lady. “Why is that?” she responds. “Because I hate him,” Gary replies.

Fast forward a few months. It is leaving day at my primary school and the year has been very tough. My attendance has been low and I haven’t had any friends. My dreams of sailing through Yr.6 were short-lived and I can’t wait to get away from Gary H. He is stood behind me right now, because we are next to each other in the register. Our procession to get our leaving certificates is minutes away but I’m crying again. Since we were lined up Gary has been kicking me after every step we take, and kicks me repeatedly whilst we are standing still. I ask him to stop. He says “No”. The girl in front of me, Laura G, tells Gary to stop kicking me. He tells her not to tell him what to do, so she tells on him. I am dragged out of the line and into the girls’ toilets and cry my eyes out – I don’t understand why he is trying to make me feel so bad and this is supposed to be my special day. The procession goes on without my name being called, and I am reminded afterwards that people missed me. But it doesn’t really do much to make me feel better.

Fast forward a few months. It is my first day of secondary school. I am excited because nobody will know who I am and how I sometimes have “interesting bowel movements”, and that’s good. I meet my new peers and teachers without having to mention my assorted maladies and for the first time since diagnosis I feel normal. Things are looking up.

Fast forward to next year. I am walking around school and everybody knows who I am. I am the boy with a “pipe in his face” – a nasogastric tube that is used to feed me a liquid diet. I’ve been off of school for 12 weeks now, and I wish I wasn’t back here, where stares come from every angle, but even this is preferable to spending another day in bed watching Scooby Doo. As I get pushed into a locker I reconsider.

Fast forward to 6^th form. GCSEs and AS levels have come and gone, and some of the guys still call me “tubey”. I look forward to leaving this place, to university. I am excited because nobody will know who I am and how I sometimes have “interesting bowel movements”, and nobody knows that I had a pipe in my face. Nobody will know that I was bullied by my friends, even by boys significantly younger than me. I’m nervous, but it’s that excited nervousness. I’ll be an equal.

Coming up in Part 4 - Uni and Conclusion...

Looking for Media Volunteers

Hi All!

We have a very specific request for media volunteers. An American journalist has asked us if we can find an IBD patient who has taken part in an IBD-related clinical trial or was part of the IBD Registry set up (this is a very new project, so there's only a very few of you out there!). This is for a very well respected American journal and they are keen to speak to someone British.

Please share this if you have any friends you think this might be relevant for.

More details can be found on our main website: www.meandibd.org

Thanks from the Me and IBD Team

Have You Ever Thought About Volunteering?

If you have some spare time and are willing to develop existing and new skills you can volunteer with Crohn’s and Colitis UK.

Anyone aged 18 years or over can volunteer.

Don’t worry if you think you might not have the skills to carry out roles that you are interested in because we sometimes provide role-specific and more general training for volunteers.

Volunteering isn’t just about sharing your skills and experience. Crohn’s and Colitis UK volunteers tell us that through volunteering they make new friends and develop confidence and self-esteem.

To find out how to get involved with Crohn's and Colitis UK click here.

To find out what particular roles are being recruited for now click here.

What Do Patient Panels Do?

An IBD Patient Panel is a group of patients who have Crohn’s disease/Ulcerative Colitis and who use the same IBD service at their local Hospital.

They believe that they can help improve the local service by meeting with the staff who provide it by:

• sharing their thoughts, experiences and aspirations on service improvement
• acting as a sounding board for proposed service re-design and changes
• raising the profile of IBD Services through events like IBD Departmental Open Days
• influencing decisions around the improvement of the provision of their IBD service

They are different from most Patient Panels because they are both disease (Crohn's and Colitis) and service/hospital specific. This means they can speak with the authority of personal experience about a service with which they are intimately acquainted, and, because they suffer from an illness which is a Long Term Condition many of them have become experts (in their own condition) by experience. They are committed to the ethos of partnership working through the co-design of services.

There are about 40 such IBD Patient Panels at hospitals around the UK and are supported by Crohn's and Colitis UK. They usually meet about four times a year, sometimes more if they are working on a particular project

Their overall aim is to improve the NHS experience of the IBD Patient at their local hospital.

To find out more about Patient Panels and the work they carry out click here.

Guest Writer Harvey - Telling School

Me, Myself and My Immune System: A brief timeline of my love affair with Crohn’s Disease.

Harvey Hancock

Part TWO

Two days later. I am ready to go home from a two-week hospital stay where I learned I had Crohn's Disease, aged 10! I vow never to watch Scooby Doo as long as I live. I say thank you to the nurses who shoved thermometers in my mouth and pricked me with needles, give a hug to the special nurse called Sian who is very pretty and very friendly (I never see her again) and wobble my way back to the car. Two weeks in a hospital has taken its toll and I look forward to sleeping in my own bed, but things don’t go to plan. I stay feverish, with flannels all over my head to cool me down. I sleep fitfully and wake up shaking. I reluctantly agree to spend three more nights in the hospital.

Fast forward a month. I am on huge doses of medication and my face is swollen up from the steroids. I am at home and enjoying the last week of the summer the way any 10yr-old should – running back and forth from living room to toilet, sleeping with 3 fans in his room and not spending any time with friends(!). My only visitor is a teacher from school.

Mr Wallace, who is going to be my teacher for yr.6 comes along and asks me if I want to share the details of my diagnosis with the rest of the class when school starts in September. Kids can be cruel and I don’t want to regret anything, so I tell him I’ll see how I feel. I joke with Mr Wallace about how I could maybe say to the class that “every Friday evening, I turn into a big green monster” and he genuinely laughs, telling me that that is the exact kind of things that will make the children understand that I’m not to be feared, that I’m still the same Harvey. He leaves and I know that, with him as my teacher, I will be safe from the bullies.

 

Fast forward to the first day of school, and the moment of truth arrives. My friends have all asked about my fat face but I have declined to answer their queries. Whilst Sarah H talks about how she spent her summer dancing, I do some maths and work out that my 6 week summer holiday was split into 3 perfect parts – my holiday to Portugal, which was a write-off, my two weeks in hospital, which were a write-off, and my final two weeks of my holiday, also a write-off. As I look around the room, taking in the posters and noticeboards, the drawers to put our work in, and the bookcase full of new dictionaries, I realise that I am so, so relieved to be back around the children with whom I have grown up. Mr Wallace asks: “So, does anybody else want to share what they did with the summer holidays?”

I’m a confident child and, if I may say so, a pretty popular figure in the class, so I have no problems with public speaking. However, as I find my hand raising itself, almost automatically, I consider my ability to sail the impending storm if I do indeed choose to share my summertime misadventure. Mr Wallace doesn’t bat an eye-lid when he sees my hand in the air, a tiny fist with one finger pointing towards the sky, amongst 35 sets of hands that remain firmly in laps or fiddling with hair. “Harvey? How did you spend your summer?”

Many things happen at once. My hand falls into my lap. I question what I want to actually say. I actually put my hand up to say I went to Portugal, and to hide my new identity until the time was right. I see the faces of all the children who were bored stiff by Sarah’s ballroom dancing competition in the summer break. I look at Mr Wallace, willing me to do only that which leaves me feeling safe, understood and happy. In a moment of madness and sensing the silence in the room I say “I spent two weeks in hospital”.

Hair-fiddling stops and all eyes stare at me. Finally, an interesting story! Mr Wallace looks at me thoughtfully and, I will never forget this, he raises his eye-brows a bit and gives me a subtle, questioning nod. I reply in kind. He smiles. “Would you like to tell us why you were in hospital, Harvey, or would you like me to explain for you?”

I get stage fright and ask Mr Wallace to do it for me. I keep my head down, ashamed to be the centre of attention in such extraordinary fashion, so I don’t know what the other children are doing. But I listen. I listen hard, and Mr Wallace does a stellar job, explaining to everyone how I became very ill over summer but am now okay. He emphasises that I am not contagious or to be treated any differently to how I was before the summer. He asks if there are any questions. Simon V puts his hand up, sheepish but still noticeable. I dread his question. Mr Wallace suddenly becomes one of the greatest men I shall ever know by simply ignoring Simon’s hand and moving on. I breathe a sigh of relief and get on with the rest of my day. Nobody avoids me, but nobody asks me any questions; a perfect first day back.

Coming up in Part 3 - dealing with the difficult kids...