Quotes from People with IBD in Employment

To mark the release of the IBD in Young People: The Impact on Education and Employment. We've collated some of the responses from the 2011 IBD and Employment survey. This is what real people say about work. It's the good, the bad and the ugly, but these are all situations that you could encounter in the world of work. How would you handle the awkward or difficult moments that are mentioned?


“I think they need to understand the 
unpredictability of it as well. I was 
asked a lot of questions at interview 
like, how often do you flare-up?
How long do they last? How does it 
affect you? I just have to say I can’t 
tell you because I don’t know…”

“I feel that as a result of my illness 

I work harder and generally take 

fewer sick days than those around 

me who are of average or good 

health.”

“I think it is important to explain to 
your employer about your condition. 
Being open and up- front has helped 
in my case, and if they are good 
employers they will understand.”

“I always feel I have more to prove 

and therefore push myself too hard, 

leaving me exhausted when I get 

home. All energy goes to

completing a full day and then I

crash when I get home.”

“Employers do not realise how 
embarrassing IBD can be. Often, 
going to the loo may be very noisy. I 
worry that work colleagues may laugh 
behind my back”.

“I now work in a shop where 

everybody knows I have IBD and 

they go out of their way to make it 

easy for me if I need to leave 

suddenly to go to the toilet.”

“I am lucky in that I can plan the 
day the way I want to plan it. I’m 
supposed to start at 8am, but it’s 
rare that I do - but I always make it 
up at the end of the day. They are 
quite flexible with that. I can also 
move stuff to the middle of the day 
if I don’t feel up to it in the 
morning.”

“My employer has been good as I 

work extra hours sometimes to 

have at least two to three days of

‘in lieu’ time in case I need to be 

off, so they have been reasonably 

flexible.”

“Working from home is a god-send 
and I can manage to work through 
some flare-ups by taking this 
option. I am lucky because my 
hours are very flexible anyway.”

"I work in a hospital with lots of toilet 

facilities. However, it is the getting to 

and from work, particularly in the 

mornings, which proves most 

difficult."

"Travelling to and from work would be 
impossible without the use of a car. I 
wouldn’t feel confident enough on 
public transport, or having to walk 
long distances, as I am constantly 
aware that I have to be close to a 
toilet.”

“My employer is very supportive and 

gave me full pay when I returned to 

work, and asked me to return on a 

phased basis for the good of my 

health e.g. two hours a day first week 

back, three hours a day the second 

week etc., until back up to seven 

hours a day.”

“Employer information from Crohn's 
and Colitis UK helped me to keep a 
toilet close to the area I work in and 
helped my employer understand 
about my condition.”

“I feel that there is a lack of 

awareness around IBD, and it’s 

challenging talking about the issues 

which would be private for most 

people without the condition”

Employment: Support for Young People with IBD

Yesterday we brought you news about the release of a new report about IBD, young people and work (which can be found on the main Me and IBD website). It raised concerns about finding employment and staying in employment. But what support is there for you?

You probably have the same hopes, aspirations and needs as any other young person, but for you IBD is also part of the equation. If you are looking for a job or are already at work, you may be wondering whether you need to tell prospective or actual employers about your condition. Or whether it is a good idea to tell your colleagues. What rights do you have; what rights does your employer have? What are your options?

All these questions are answered in our information sheet Employment and IBD: A Guide for Employees and some more info can be found in another of our info sheets IBD Concerns for Young People, which has all sorts of general info about life with IBD. 

Many people with IBD want to and do have a a successful work career, but sometimes managing IBD at work can be a challenge. Raising awareness of Inflammatory Bowel Diseases, their impact on work and the simple steps that employers can take to improve working conditions is what the charity is striving to achieve.

One way we've found useful is the Crohn's and Colitis UK 'Good Desk Bad Desk' website - www.GoodDeskBadDesk.com - which shows (unsurprisingly, given the name) a Good Desk and a Bad Desk for an employee with IBD. It's a really simple way of showing employers the nightmares that can be overlooked by people who are ignorant of IBD symptoms. The really basic stuff - such as being near the toilets or a bit of flexibility for hospital appointments. These things can make all the difference.

You can also help inform your new boss and work colleagues about IBD by giving them the information sheet specially designed for employers. It is intended to help employers and managers understand what it means to have IBD, and how it can be possible, sometimes with minimal changes, for people with Ulcerative Colitis or Crohn’s Disease to work successfully and to fulfil their potential. It also considers the legislation that is relevant for managing people with such long-term health conditions.

"These challenges can be overcome but it requires action from people with IBD, their teachers, employers, and careers advisers, as well as policymakers and health professionals. By working together to implement some simple measures, we believe that people with IBD can be supported to gain the qualifications, education or training and access the careers they want, benefitting not only themselves and their families, but society and the taxpayer as well."

David Barker

CEO of Crohn's and Colitis UK

DID YOU KNOW??

One third of NEETS (that's those young people who are Not in Employment, Education or Training) don't claim benefits. 

If you'd like more information on your rights and for more details on what you may be entitled to head over to our main website, where there is a wealth of information. Click here.

IBD and Employment Part 2 - Disability, Equality and Employment Rights

If you have Crohn’s Disease or Ulcerative Colitis – conditions collectively known as Inflammatory Bowel Disease (IBD) – you may be concerned about your employment position. You may be employed or looking for a new job. You may be on benefits and are thinking about returning to work. While IBD is a chronic condition, with appropriate treatment it is often possible to remain well for long periods and many people with IBD are able to work full-time.

This series of articles sets out to answer some questions you may have about your possible options and how you may be protected by law. The quotations that are included are all from people who have IBD who responded to a 2011 Crohn’s and Colitis UK survey on IBD and employment.


When is IBD a disability?

When asked whether or not they consider themselves to have a disability, 51% of respondents to the 2011 Crohn’s and Colitis survey answered yes. However, many people with IBD do not consider themselves disabled. Anyone with an ongoing illness may qualify for protection against discrimination. The fact that your
IBD is a variable condition, generally with good days and bad days, does not affect your rights. The main point is that the overall effect is long-term.

The Equalities Act 2010 defines disability as a physical or mental impairment which has an effect on a person’s ability to carry out normal day-to-day activities. This includes ‘hidden’ impairments or disabilities such as incontinence. The effect must be substantial, adverse and long-term. For example, the loss of bowel control is considered substantial and adverse if it is unpredictable and leads to immediate major soiling, even if it is infrequent. Minor but frequent loss of bowel control may also qualify as substantial and adverse. Long-term is generally taken to mean the effect has lasted, or is likely to last, at least a year. In most cases treatment for a health condition is not considered when deciding if someone is disabled under the law. This means that you may benefit from the protection of the Equalities Act if your symptoms are controlled by medication.

For more information about the Equality Act 2010, contact the Equality and Human Rights Commission or your local Citizens Advice Bureau listed under Further help.

What protection do I have under the Equality Act 2010?

The Act applies to all employers, whatever their size, except the armed forces. If you are considered to have a disability you qualify for protection under the Act, which covers all aspects of employment from recruitment to selection, training, promotion, redundancy and dismissal. Discrimination under the Act means either  treating a disabled person less favourably than others because of their disability, or failing to make reasonable adjustments to the work place or working arrangements.

It is also unlawful to victimise a disabled person if they wish to take or have taken action in relation to their rights under the Act.


What are reasonable adjustments?

If the Equality Act applies to you, you can ask your employer for reasonable adjustments when any aspect of your working arrangements, including the building or place of work or your working hours, puts you at a substantial disadvantage compared to a non-disabled person doing your job. These adjustments are not favours but rights.There is no certainty about what is or is not reasonable, but the cost and difficulty in making the adjustment and the size of the employer will be taken into account. Generally, if the adjustment is not too expensive considering the resources of the employer and the type of business, it is more likely to be considered reasonable.

Helpful adjustments that would not generally be too expensive could include:

• Allowing time for medical appointments or treatment
• Changes to your working day such as shorter or different hours
• Unlimited toilet breaks
• Moving your work station close to a toilet
• Providing a car parking space close to the entrance into work
• Allocating some of your duties to someone else
• Offering another place of work
• Providing you with relevant training, for example if some of your duties have been reallocated and you take on new tasks that are more suitable to your needs.

“I was informed that I would have to

work night duty as part of my role but

in the past night duty has given me

unnecessary flare ups. My previous

manager was very understanding

and took me off the night rota.

However, my recent employer is

unsympathetic, so I sought advice

from our occupational health

department who sent my manager a

letter stating I was not expected to

do nights.”

Four out of five respondents to the 2011 Crohn’s and Colitis UK Survey said that the ability to take time off for doctor or hospital appointments, separate from holiday allowance, was important to them. Nearly three out of five rated flexible working hours as important and more than one third placed importance on the ability to work from home.

Where adjustments are expensive, such as installing separate toilet facilities, a scheme called Access to Work may be able to help (see below). Ultimately, if it is not possible for you to agree with your employer about whether an adjustment is reasonable, you could issue a claim in the employment tribunal in respect of your employer's failure to make reasonable adjustments and seek an award of damages. However, before you are able to issue a claim you would need to raise a formal written grievance with your employer. (See What can I do if I feel I have been discriminated against?) Contact the Equality and Human Rights
Commission for further information.

What is Access to Work?

Access to Work is a government funded scheme to help people with a disability overcome practical difficulties that may stop them from working. It is available for part-time or full-time workers and for those who are self-employed or unemployed and looking for work.

Besides possible help towards installation of toilet facilities, Access to Work can help in a number of ways such as with the additional costs of travel to work, if you are unable to use public transport. Any help provided is for a maximum period of 3 years, after which there is a review.

More information about Access to Work is available from the government website directgov.com. You can ask the Disability Employment Adviser at your local Jobcentre Plus office to put you in touch with your closest Access to Work Business Centre.

What can I do if I feel I have been discriminated against?

If you have had a conditional job offer withdrawn on medical grounds but feel that you would have been able to do the job with reasonable adjustments, you can make a complaint to an Employment Tribunal. The Equality Act places the burden of proof onto the employer to show that you have not been discriminated against.

If you suspect you have been treated unfairly in this way, it may be helpful to seek advice from the Equality and Human Rights Commission. You may also face difficulties because of your IBD when you are in work. For example, you may be bullied by colleagues who believe that you just have a stomach upset, or do not understand that your tiredness is due to your IBD. As a first step it is usually a good idea to talk informally to your employer or manager about your concerns of how you are being treated. Often things can be resolved by talking them through, although it can also be useful to keep notes of conversations or meetings just in case you need to take the matter further.


Making a formal complaint

If you find the situation does not improve, you could make a formal complaint through your employer’s internal grievance procedure. A written grievance has to be submitted no later than three months after the discrimination happened. Your employer then has to arrange a meeting with you to discuss the problem. You have a legal right to take a colleague or trade union representative with you if you ask your employer beforehand. Alternatively you could ask a family member to accompany you, but in this case your employer does not have to agree to it. If you are not happy with the result of this meeting you can make an appeal to your employer.

If you find it difficult to make a complaint or if, having made it you are still not satisfied with the outcome, you might want to contact the Equality and Human Rights Commission, ACAS or other similar organisations to explore your options. You may be referred to a caseworker to help you to negotiate adjustments with your employer or, if necessary, to help you make a complaint to an Employment Tribunal.

In Part 3 - Travelling to Work, Returning to Work