Written evidence from Crohn’s & Colitis UK DYE0019

1.      About Crohn’s and Colitis

1.1   Crohn’s Disease and Ulcerative Colitis are the two main forms of Inflammatory Bowel Disease (IBD). They are lifelong immune-mediated conditions, affecting over 500,000 people in the UK. The conditions can be debilitating, painful, and life changing. Symptoms include urgent and frequent diarrhoea, rectal bleeding, pain, fatigue, anaemia, weight loss, and inflammation of the joints, skin, and eyes. There is currently no known cure.

1.2   Crohn’s and Colitis are relapsing-remitting diseases. Relapses (or ‘flare-up’s) often occur suddenly and unpredictably throughout a person’s lifetime. There is significant variation in the pattern and complexity of symptoms between people and across the life course, and an estimated 1 in 3 people with IBD have a severe form of the disease which results in repeat hospitalisation. The physical and mental impact of living with Crohn’s and Colitis can prevent many from fully participating in employment or education.

1.3   People living with Crohn’s and Colitis often require specialist medications and surgery, hospital admissions, investigations, and outpatient appointments. Relapses are unpredictable in nature, and around 50% of people with Crohn’s and Colitis experience at least one flare-up per year.

1.4   More than a quarter of people with Crohn’s and Colitis had to wait over a year for diagnosis, with almost half ending up in Accident and Emergency Departments (A&E) during this time[i]. Long delays lead to worse health outcomes, and leaves people without a diagnosis, without treatment, and unable to access workplace and Government support.

1.5   Crohn’s & Colitis UK is the leading charity for IBD in the UK. We work to improve awareness, understanding, diagnosis, treatment, and care of Crohn’s and Colitis, and to fund research for a cure. We are also a member of the Disability Benefits Consortium.

“My current biggest worry is being able to work and function whilst my health fluctuates. Because of the uncertainty of my symptoms, and my body’s unreliable response to treatment, I find it difficult to commit to plans, certain types of work, and living an enjoyable life in general.”

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2.      What progress has been made, especially since our 2021 report on the disability employment gap, on supporting disability employment?

2.1   Research commissioned by Crohn’s & Colitis UK in 2022 identified that 500,000 people in the UK currently live with Inflammatory Bowel Disease (IBD). This is almost double the previous estimate; meaning the prevalence of IBD in the UK is far higher than previously believed[ii].
 

2.2   Many people with IBD lead active lives, but employment can be significantly impacted, particularly for those with the most severe symptoms. The unpredictability of the disease can be hugely disruptive. Flare-ups can lead to frequent and urgent need for the toilet and less visible problems, like loss of sleep, pain, and fatigue, can have a profound impact on energy levels and mental health.

2.3   A Demos survey of people living with IBD[iii] found that:
 

• 57% had, at some point, reduced their working hours because of their IBD.
• 46% had left a job because of their IBD.
• 51% had applied for lower-paid work.
• 49% believed they had been made redundant because of their IBD.
• Two-thirds (68%) thought that having IBD had a negative impact on their career.

2.4   While there has been some progress in the provision of flexible working and employment support for people with long-term conditions, Crohn’s and Colitis can be difficult to talk about because of stigma and misunderstanding. This can leave people too ashamed to talk about their condition or seek the treatment and support they need[iv].
 

2.5   More than a quarter of those with Crohn’s and Colitis wait over a year before receiving a diagnosis, with almost half ending up in A&E while waiting for diagnosis[v]. Delays to diagnosis affect people’s ability to continue education and work, limits their treatment options, and increases their risk of being hospitalised or needing emergency surgery.

2.6   We are concerned that healthcare services are not meeting the needs of people with IBD, and we are seeing huge delays in diagnosis and treatment. Limited awareness of IBD means that many people delay presenting in primary care with their symptoms and are misdiagnosed or referred for the wrong tests, because of the lack of a national diagnostic pathway. In secondary care, people with IBD face long waits for appointments with gastroenterology teams, and further waits still for diagnostic tests such as endoscopies[vi].

2.7   Without timely access to diagnosis and treatment, people with Crohn’s and Colitis are less able to participate in the workforce and are unable to engage with programmes designed to support disabled people in work. To ensure that progress is made in supporting people with IBD to enter and remain in work, it is vital that they can access diagnosis and treatment without delay.

3.      What should be the priority actions to enable further progress with supporting disability employment for: i) employers; and ii) the Government?

Employers

3.1   Employers should create an environment where people with IBD feel able to disclose their condition. With a supportive line manager, people with Crohn’s and Colitis report a positive experience in the workplace and can better receive support and reasonable adjustments. Employers should consider how they can improve their awareness of disabilities and long-term conditions and ensure employees are supported to disclose their needs.

Campaigns such as ‘Are You IN?’ from Crohn’s & Colitis UK can help with this.

“Although the adjustments have improved my working experience, I have to say that it is the caring and understanding nature of my line manager and colleagues that has meant the most to me.”

Woman living with Crohn’s Disease.

3.2   Reasonable adjustments for people with Crohn’s or Colitis can include:

• Time off for medical appointments or treatment.
• Shorter, different, or flexible working hours.
• Unlimited toilet breaks.
• Workstations near a toilet.
• Accessible parking.
• Considering whether some duties could be allocated to another staff member.
• Alternative workplaces or home working.
• Adjusted performance targets to consider the effect of sick leave or fatigue.
   

3.3   Reasonable adjustments cannot be “one size fits all”. Employers should be educated about the nature of fluctuating conditions and develop plans to support employees at all stages of their disease.
 

3.4   Where roles can be flexible, we urge employers to make this explicit in job adverts so applicants will know from the outset that flexibility will be available to them. Employees should be made aware that it is possible to make time-limited requests to work flexibly.

3.5   We encourage employers to share best practice around flexible working, particularly where they have supported staff with fluctuating conditions. This not only makes employers more desirable for people with long-term conditions, but also shows other organisations how they can better support staff with health conditions.

“First of all, we’re doing it because it’s the right thing to do. But it also means you can attract a wider pool of talent, and it’s great for your reputation as you’re seen as a forward-thinking employer. We’ve had some very good feedback from clients, and it means we’re a business they want to do business with.

The rewards far outweigh the costs in terms of time and effort. I’d 100% recommend it to other organisations”.

Managing Director of an organisation signed up to ‘Are you IN?’

Government

3.6   We would welcome specific proposals to make flexible working the default for people with long-term conditions. We believe introducing flexible working as default will have benefits for people with long-term conditions and for the economy; helping to better manage sickness absence, address inequalities, promote well-being and boost productivity. People with IBD tell us that flexible working practices - including flexible hours, reduced travel, and working from home - improved their ability to manage and cope better with symptoms.

3.7   The Government should consider steps to ensure that employers cannot use the introduction of flexibility to gradually manage someone with a long-term condition out of their job or reduce their hours permanently. In all circumstances, when flexible working is discussed, employees should be made aware of the time-limited request option.

3.8   We would like the UK Government to follow the example of the Scottish Government and launch a national campaign to raise awareness of Crohn’s and Colitis; to raise awareness of symptoms, support people to access a diagnosis, and help tackle the stigma and misunderstanding of IBD.

How can people with disabilities and health conditions be better supported to start and stay in work?

4.1   GP surgeries and IBD services should provide newly diagnosed patients with information on IBD and employment. Department for Work and Pensions (DWP) and NHS staff should be trained to signpost to patient organisations that can support people with IBD with up-to-date information around employment and living with their condition.

4.2   The DWP should provide regularly updated information on IBD for work coaches that are co-produced by the voluntary sector, clinicians, and people with IBD. They should commit to increasing and protecting the number of Disability Employment Advisers and ensure they receive continuous training to help them effectively support work coaches.

4.3   Access to Work and Disability Confident should acknowledge and improve work opportunities for people living with invisible disabilities and conditions. They would benefit from using language and descriptions of disability that are more inclusive of invisible and fluctuating conditions like IBD.

4.4   The Government should work with the voluntary sector to improve awareness of the Access to Work programme amongst employers and employees. The benefits of the scheme should be properly communicated to people with long-term conditions, particularly those leaving education and entering the workforce for the first time.

4.5   We would like to see systems which can prioritise flexible working requests from people with long-term conditions and responds to them more quickly. This could help minimise the impact of those with fluctuating and unpredictable conditions and their employers.

4.6   The Government should explore other ways of supporting people with fluctuating conditions. For example, some Scandinavian countries have adopted the concept of ‘partial sick leave’, where benefits are paid to people with long-term conditions to help them remain in employment. Trials in Finland demonstrated that people on these schemes had 20% fewer additional ‘sickness’ days than people on the standard scheme and were able to remain in employment[vii]. This could allow people with IBD to return to work on a part-time basis rather than being fully on sick leave.

4.7   During a flare, people with IBD may be unable to work for some time and may therefore receive sick pay. They may also face additional costs during this time; for example, paying for multiple new prescriptions. Currently, those eligible for Statutory Sick Pay receive £109.40 a week, for up to 28 weeks. It is essential that Statutory Sick Pay is fit for purpose and allows people the time and resources to focus on their recovery, without adding financial uncertainty and stress.

4.8   Some people with Crohn’s and Colitis need to try multiple medications before finding one that works, which can mean paying for numerous prescriptions. Our research has found that the cost of prescriptions is leading people with chronic conditions to skip medication, resulting in worse health outcomes and a longer period away from work. At a time when people should be able to focus on getting better, it is essential they have the financial support to do so.

4.9   The dynamic nature of IBD should be captured in workplace research, to assess the extent to which workers with IBD experience changing needs. Workers and employers would benefit from resources that help identify aspects of jobs that may become difficult and provide suggestions for accommodations that can help to reduce these barriers.

4.      What are the barriers to employers hiring disabled people and ensuring those people stay in work?
 

4.1   Stigma and misunderstanding can make disclosing IBD to an employer difficult. It is vital that employers create a supportive environment where people with IBD can discuss their condition and what reasonable adjustments may help them. Guidance for employers can help to address concerns, misunderstandings, and provide useful tools and tips[viii]. 
 

4.2   People living Crohn’s and Colitis tell us how important ‘reasonable adjustments’ are for their employment. As the impact of IBD is different for different people, and can change throughout an individual’s life, reasonable adjustments should be tailored to individual needs. Adjustments could include remote working, flexible hours, good quality toilet facilities and access, time off for medical appointments, and accessible parking.
 

4.3   Employers should be educated about the adjustments they are required to provide and how the Access to Work scheme can help facilitate more accessible workplaces. Employers should be educated on the nature of fluctuating symptoms and have plans to support employees at all stages of disease.
 

4.4   Opportunities to develop and progress within an organisation should be available and accessible to employees with long-term conditions. Organisations should consider whether their appraisal and performance metrics disadvantage staff with health conditions and promote presenteeism over effective work.

5.      How can employers be better incentivised and supported to employ disabled people and to adapt jobs and workplaces to better accommodate their needs?

5.1   We would like to see tailored communications that increases employers’ understanding of fluctuating and invisible conditions to improve work opportunities for all people with long-term conditions.
 

5.2   We encourage the Government and employers to work with expert organisations to improve their understanding of long-term health conditions and how to better support those affected. The Crohn’s & Colitis UK ‘Are You IN?’ campaign helps employers to better understand and talk about invisible disabilities and long-term health conditions.

5.3   Employers should be educated about the benefits of improving workplace accessibility and supporting employee wellbeing, including improved workforce productivity, better employee satisfaction, and lower staff turnover.

5.4   Employers should be required to show that they have considered alternative working arrangements when rejecting a statutory request for flexible working. Employees should be signposted to guidance and advice on their rights if they are denied flexible working.

5.5   Employers must be informed of the support they are required to provide employees and made aware of how the Access to Work scheme can help facilitate this. They should be educated that reasonable adjustments are not necessarily high-cost interventions, and that straightforward adjustments can make a significant difference.

5.6   Training and resources should aim to support conversations on disclosure and reasonable adjustments and improve understanding about living and working with a long-term condition.

6.      Does self-employment provide a valuable route for disabled people to find and stay in work? How could support for self-employed disabled people be improved?

6.1   Self-employment can offer a level of flexibility that traditional employment does not, for some people living with Crohn’s and Colitis. Ongoing stress is recognised as a potential trigger of flare-ups, and some people find that self-employment offers greater control over their workload and their stress levels.

6.2   However, fluctuating conditions like IBD can make it difficult for self-employed people to predict what their workload and income will be. Unexpected flare-ups or long periods of ill health will significantly impact self-employed people with IBD, particularly without access to Statutory Sick Pay. People with pre-existing conditions may also face high premiums or be ineligible for income protection insurance.

Man living with Colitis.

6.3   It is vital than people with long-term health conditions do not feel pressured into self-employment, because of inaccessible and unaccommodating workplaces. While self-employment can provide valuable employment for some disabled people, it should be one of many employment options available to people with long-term conditions.
 

6.4   Access to Work is available for self-employed people, but work is needed to improve awareness of the scheme. People living with Crohn’s and Colitis may also find it difficult to talk about and articulate their condition in face-to-face assessments, so it is important that assessors have a good understanding of invisible and fluctuating conditions.

7.      How successful have policies, such as Access to Work and the Disability Confident Scheme, been at increasing employment rates among disabled people and ensuring disabled people stay in work? How could they be improved?

7.1   Access to Work and Disability Confident need to do more to acknowledge and improve work opportunities for people with invisible disabilities and conditions. These programmes would benefit from using language and descriptions of disability that are more inclusive and recognise conditions that are non-visible and fluctuating.
 

7.2   Access to Work is currently very focused on aids and equipment in the workplace. We believe it should extend the approach it takes in mental health, in terms of developing a support plan, to long-term health conditions. We believe that this group of workers would also benefit from flexible working patterns, regular catch ups to discuss their concerns, phased work returns and additional time to complete certain tasks.

7.3   We believe that support planning would promote a more proactive, preventative approach to managing absence and presenteeism in long-term conditions that flare. We believe it would encourage employers and employees to co-produce work strategies to enable employees to work well in the long-term and address periods of ill health, mitigating against avoidable periods of absence or changes to working conditions.

For further information, please email policy@crohnsandcolitis.org.uk.