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, Young People and Employment - New Report Released

Are you daydreaming about what you want to be when you grow up? Maybe you're off to university soon, or just finishing and just settingoff into the big wide world of work? Is it proving tough?

Well, it's a difficult time work-wise for everyone at the moment, but young people are really bearing the brunt of hard economic times - nearly 1 MILLION unemployed in the UK at the moment.

Today sees the release of Crohn's and Colitis UK's sub-report "Inflammatory Bowel Disease in Young People - The Impact on Education and Employment" which focuses on young people aged 16-25. It looks at the concerns of those still in education, support within the workplace for those who are already employed and offers recommendations as to what needs to be done in the future. You can view it here.

The original "Crohn’s, Colitis and Employment - from Career Aspirations to Reality" report, commissioned by Crohn’s and Colitis UK, was published in May 2011.This report aimed to assess the impact of IBD on career aspirations, opportunities and choices. It was based on the results of a survey conducted among almost 2,000 people in the UK with IBD. You may have seen coverage in the news:

An article in the New Statesman this month gave the following worrying statistics for young people leaving school this year:

• Last year 1 in 4 employers didn't employ a single person under the age of 25.
• On average, young people in the UK will spend 2.5 years out of work.
• Those with low or no qualifications are 3 times more likely to be unemployed.

These numbers don't make for pleasant reading, but don't be disheartened - in the report we found that young people in employment had a more positive outlook on aspects of employment than those still in education. In other words, if you've just been diagnosed and you're still at school please don't give up! 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.

Here is a taster of the information from the report, the statements that pre-employed young people agreed with the most:

The full report, and a handy infographic illustrating the results, can be found on the Me and IBD website. Click here

The 2011 Crohn's and Colitis UK survey ("IBD and Employment") found that 81% of employees had told their employer or HR department about their IBD, and 77% had told their coworkers. Most employees said that they felt comfortable about discussing their condition.

Tomorrow we will bring you more information about IBD and Employment and the support that is available for young people.

Employment and IBD Part 4 - Leaving Work and Financial Help

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.

What can I do if my employment is no longer suitable?

You may find that having tried changes to your current employment such as altering your working hours, job-sharing, working part-time, or a change of location closer to home, your condition still makes it difficult to continue despite reasonable adjustments. In this case, it is not unusual to feel angry or upset at the impact of IBD on your working life or career. There are various options you could consider including:

• Self-employment – you may feel daunted at the prospect of setting up your own business or worry that you would miss socialising at work. But some advantages are that you can often work the hours to suit your energy levels and, if you can work from home, reduce the fear or possibility of having an ‘accident’ in public.

You can get help and advice about self employment from several organisations including the Citizens Advice Bureau, Leonard Cheshire Disability, the Northern Pinetree Trust and from government schemes such as Access to Work, as mentioned in the previous article.

“As I am self-employed, this gives

me more flexibility than
employment. If I didn’t have IBD
and its symptoms I might have gone
back to employment, but now I
consider self-employment more
suitable.”

• Re-training – you may find that another kind of job makes it possible for you to work more comfortably. There are a number of organisations that offer training such as the Shaw Trust, Ability Net, Leonard Cheshire Disability, and SHARE Community.

Volunteering – if income is not crucial, you might consider voluntary work, which could provide a challenge while allowing you to give something to others. You can contact national volunteering organisations such as Volunteer Now, Volunteer Development Scotland, Volunteering England, Volunteering Wales, or Do It  for ideas and opportunities. They each provide an online database of volunteer jobs. Crohn's and Colitis UK also has volunteering opportunities around the UK. For further information contact our Member Involvement and Volunteering Team on 01727 734475 or email: enquiries@crohnsandcolitis.org.uk.

What Financial Help is Available?
If you have care or mobility needs arising from your IBD you may be eligible for Disability Living Allowance (DLA), whether you are working or not. We provide a Guide to Claiming DLA, or you contact our Information Line for a copy (0845 130 2233).

If you are in employment, your employer should pay Statutory Sick Pay if you are too ill to work. This starts after you have been off sick for 4 days and can be paid for up to 28 weeks. If you are not well enough to return to work after this time, or if your employment is terminated, you may qualify for Employment and Support Allowance (ESA). Some employers may make additional payments through their own sick pay scheme. This will depend on your terms and conditions of employment.

If you are well enough to look for work you may be eligible for Jobseeker's Allowance. You may also get help and support through schemes available to help people get back into work. For more information contact Jobcentre Plus or see the directgov website.

If you have been on benefits and are going to start a job, you may be able to obtain a job grant. This is a one-off tax free payment.

If you are on a low income or on certain benefits you may be entitled to claim help with fares to hospital through the Health Care Travel Costs Scheme. The scheme allows travel by public transport or private car. 

You can get more information about these and other benefits and details of helpful organisations from our guide: An Overview of Welfare Benefits for people with Ulcerative Colitis and Crohn's Disease.

For further help call the Crohn's and Colitis UK Information Line on 0845 130 2233 open Mon-Fr 10m-1pm or email info@crohnsandcolitis.org.uk

For all the information contained in this series of articles, and more, read our Employment and IBD: a guide for employees information leaflet.

Employment and IBD Part 3 - Travelling to Work and Returning to Work After Time Off

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

Travelling to work

Many people with IBD tell us that travelling to work or jobs that require travelling are particularly difficult. You may find it helpful to obtain a key for locked public toilets for disabled people from RADAR (The Royal Association for Disability and Rehabilitation). RADAR runs a National Key
Scheme for people to access specially adapted toilets that are kept locked to avoid vandalism.

They also provide a location guide to approximately 7,000 toilets throughout the UK. You may also get help with travel costs from Access to Work, as mentioned in the previous article.

“Because of lack of toilets I have to be

careful about my route and avoid

stressful situations like tube

stoppages. I dread being stuck on

the tube. Once I am in work I am

generally OK.”

Returning to work after a long absence 

If you have been off work for several weeks or months because of your IBD, you may feel anxious about returning to work. It is common for people to lose confidence about being able to return to work even after a relatively short time away on sick leave. Keeping in touch with an employer can help, and it may be helpful to set up an agreed procedure, if possible in advance, for how your employer will maintain contact with you whenever you are absent. This could specify a timescale, for example, suggest contact once you are absent formore than two weeks and/or specify the method by which you would prefer to be contacted e.g. phone, email or personal visit. You may prefer contact from a coworker, close colleague or union representative rather than your direct line manager.

It is important not to feel pressured into returning to work too soon before you are well. You might want to discuss a phased return to work, as you may not be able to work a full day at first. For example you might want to start working only a few hours each day and gradually increase your hours over time. Or perhaps you may want to ask for a reduced work load or lighter duties to begin with. Generally the more open you are about your needs, the more likely it is for your employer to be open and willing to make reasonable adjustments to help you back to work.

If you have to remain away from work until reasonable adjustments are in place (for example, moving your work station close to a toilet), arguably this should not be recorded as ‘sick leave’. 

“My employer is very supportive and

gave me full pay when I returned to

work from operations, 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.”

If you are absent from work because of a disability-related sickness, it is important that this is recorded separately from other sickness absences, such as having a cold. This is to make sure that you are not discriminated against if, for example, decisions about promotion or bonuses take other sickness absences into account.

In Part 4 - Leaving Work and Financial Help

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