Written evidence from Crohn’s & Colitis UK (HAB0093)


About us 


1.       Crohn’s & Colitis UK welcomes the opportunity to submit to the Work and Pension’s inquiry on health assessments for benefits.


2.       Crohn’s & Colitis UK is the leading charity for Crohn’s and Colitis in the UK. We work to improve diagnosis, treatment, and care, to fund research into a cure, to raise awareness and to provide information and support.[1]


3.       Inflammatory Bowel Disease (IBD), the two main forms of which are Crohn’s Disease and Ulcerative Colitis, affects over 500,000 children and adults in the UK. They are lifelong, often debilitating conditions, with no cure.[2] Symptoms include urgent and frequent diarrhoea (often with blood), abdominal pain, fatigue, and weight loss, with associated anxiety and depression. They lead to time off school and work, withdrawal from social relationships and inability to carry out everyday activities, such as shopping and exercise. IBD doesn’t just affect the gut. It can affect almost every part of the body and every aspect of life: from digestion, eyes and joints to energy levels and mental health. With many of these symptoms invisible, it can appear that someone looks healthy when they are in fact incredibly unwell. This creates stigma and misunderstanding around IBD, with thousands of people suffering in silence.


4.      People can be diagnosed at any age, with most diagnosed between the ages of 15 and 40. IBD requires tight monitoring and management, often over several decades depending on age of diagnosis. Care is managed across primary and secondary care, often with high-cost medications or surgery, or a combination of both. Delayed diagnosis increases the likelihood of surgery or more expensive treatments and results in a poorer prognosis.[3] If left untreated, poorly managed or in cases of severe disease, Crohns and Colitis can cause serious complications, which require emergency medical and/or surgical intervention. The burden of Crohn’s and Colitis on the NHS is increasing year on year and per patient costs are comparable to cancer and heart disease.[4] The annual cost of treating a flare (relapse) is up to six times greater than for treating a patient inremission.[5]


Summary of points and recommendations








  1. How could DWP improve the quality of assessments for health-related benefits?


People with Crohn’s and Colitis often use words like ‘battling’ and ‘fighting’ to describe their experience of applying for ESA and PIP. Issues with these benefits are the most frequently cited reason for people contacting the Crohn’s & Colitis UK Helpline with benefit-related queries.[6] Face-to-face assessments and the lack of knowledge that assessors have of IBD generate the greatest numbers of complaints.


People with IBD frequently express concerns that assessors do not understand the true impact of the condition (both physically and emotionally), its fluctuating nature, and its effect on their ability to maintain employment, relationships, education and engage in day-to-day activities. They feel that assessors prejudge eligibility based on their physical/mobility capability within a face-to-face assessment (informal observations), rather than asking probing questions that are relevant to their lives with IBD, a non-visible condition, across the different descriptors.


The assessment requires understanding and sensitivity, as well as assessors skilled in drawing out what a real day for a person with IBD looks like. This can be a challenge as people with IBD may find it very difficult or embarrassing to talk about their experience, especially given

both the lack of awareness of the condition and the nature of the symptoms, such as urgent and uncontrollable diarrhoea. During a ‘flare’ of the condition, people with IBD often report requiring the toilet more than 20 times a day. It is imperative that more is done to ensure that people with IBD are seen by professionals who understand that its effects are not restricted to the gut but can also include the liver, eyes, and joints as well as energy levels, pain, and mental health.


More needs to be done to engage people with IBD proactively and positively about benefits and to support them to better understand what is being assessed. The misunderstanding that eligibility is not solely based on medication prescribed or a specific diagnosis means that people often do not provide the right information in their application. Patient organisations and Citizens Advice continue to be the main sources for assistance and support in understanding benefit entitlement and making an application. We support the Disability Benefits Consortium’s recommendation that the government should fund an independent advice and advocacy network made up of local authority, peer network, VSCE and community-based organisations. This would support greater parity of access and consistency of high-quality advice across the country.


For those admitted to hospital, it is extremely important that those who have received awards get the proper help and support to either maintain, apply, or reapply for benefits. People with IBD may require longer stays in hospital (over 28 days) associated with complex surgery, complications, or flares. This can have a heavy physical and mental toll, not just on the individual but also on others close to them and make it more challenging to deal with the benefits system. Given their vulnerability, age, and likelihood to have dependents, it is vital that healthcare professionals and the DWP are proactive in supporting people with IBD to transition to or between benefits as smoothly and promptly as possible.


The assessment process should consider their physical ill health, need for rehabilitation and mental wellbeing following a period of serious illness. Ideally, we don’t want to see anyone who is in hospital for over 28 days losing PIP or the disability elements of other benefits such as universal credit. We also feel that the policy of having to inform the benefits office if you have an overnight stay in hospital for people with IBD is overly bureaucratic, especially as there is not one process for doing this but will require the person to contact each benefit source (e.g., housing and council tax) individually.


  1. Are there any international examples of good practice that the Department could draw on to improve the application and assessment processes for health-related benefits?


Other countries within Europe support people with fluctuating conditions in a range of different ways. For example, some Scandinavian countries have adopted the concept of ‘partial sick leave’, whereby state benefits are paid to people with long-term conditions and disabilities to help them remain in employment. Trials in Finland demonstrated that people on such a scheme had 20% fewer additional ‘sickness’ days than people on the standard scheme and were able to remain in employment. “Partial sick leave allows people with reduced workability to work part time. Thereby, a full-time sick leave can be avoided, and the partial sick listed person will maintain his or her connection to the labour market, which should make a full time return to work more likely at a later point”. It may prove informative to look at this more supportive approach to welfare benefits and employment in greater detail.[7]



  1. Do the descriptors for PIP accurately assess functional impairment? If not, how should they be changed?


Improving the assessment of fluctuating, long-term conditions


“An individual must be able to complete an activity descriptor reliably, in a timely fashion, repeatedly and safely, and where appropriate using suitable aids and appliances.”

Based on feedback from people with IBD, we would like to see improvements in the way fluctuation and the cumulative effects of fatigue, pain and mental health impact are considered. People with IBD have told us that the application form does not enable them to explain how their condition affects them on a day-to-day basis including how their condition fluctuates.

The DWP state that pain and fatigue are considered when assessing whether an activity can be “undertaken repeatedly and safely”. However, the experiences of people with IBD demonstrate that this depends on the quality of the medical assessment and the assessor’s understanding of IBD, including its fluctuating nature. People with IBD can find it difficult to articulate how their condition has fluctuated over a specific period, which may include difficulty recalling information over weeks or months, the emotional impact of having to do this, and coping strategies which may lead them to forget or suppress uncomfortable or distressing memories.

Consequently, we believe the descriptors and supporting guidance could be clearer and more specific (for example, reliably, repeatedly, safely criteria and their definitions should be embedded within the wording of each PIP and WCA descriptor), supported by improved training for assessors on probing fluctuating conditions and specifically on IBD.

“Even on a good day it doesn’t mean you’re good, it means that you’re slightly              less worse than you were the day before.”

Furthermore, the focus on an “average” day and 50% rule feel arbitrary. Exploring what a person can do on their best days, and how often these occur, and likewise with their worst days, will present a more holistic picture of a person’s needs and abilities.

The incorporation of a fatigue rating scale, with condition-specific fatigue measurements, into PIP assessments (and the WCA) would more effectively capture what is, for many people living with IBD, the most debilitating component of their condition. There are bodies of research and tools that the DWP can draw upon such as the Fatigue in IBD rating scale and forthcoming findings of the IBD-BOOST study to improve the assessment of fatigue.


“Just feeling very, very weary, and no inner energy...I’m “bone weary” is the old way of describing it.”




Fatigue is both more frequent and more severe in people with IBD than in the general population.[8]  Research shows 86% of people with active IBD report fatigue and, even in

remission, 40% say fatigue is their greatest concern.[9] It is unpredictable, can vary from day to day and isn’t necessarily linked to physical or cognitive exertion.


Fatigue in IBD is linked to inflammation, pain, nutritional deficiencies, emotional distress, medication side effects and disturbed sleep. Interviews with past PIP applicants found that while the fatigue resulting from IBD was often the most disabling symptom, it was also the symptom that they felt was least represented in their assessment. Fatigue can affect physical activity, memory and concentration, social activities, emotions, and work/education. People with IBD also report fatigue and pain having significant impact on bowel control, and of the cumulative effect that these interrelated symptoms have on each other.


“My pain is exhausting, and it’s rarely just pain. If not accompanied by diarrhoea, fatigue, or other debilitating symptoms, it’s joined by a spiral of anxious thoughts about what the pain means.” 


Chronic abdominal pain is a common symptom in IBD, affecting up to 70% of people with the condition[10] and represents a significant health burden, impacting quality of life and psychological wellbeing. Pain is also associated with extraintestinal disease in people with IBD and includes back and joint pain.[11] Pain management in IBD is complex and challenging.[12]


“I’d built up a lot of negativity around the condition, thinking that my body was useless, and I couldn’t do all the things I wanted to do.”


IBD can affect people’s emotional wellbeing, with rates of anxiety and depression being significantly higher than in the general population.[13] This can be due to a range of issues including the impact and nature of symptoms, coming to terms with having a lifelong and often debilitating condition, sleep disturbance, the unpredictable nature of the condition or loss of self-esteem related to body changes or surgery. There is growing evidence of a direct two-way link between the gut and the brain which causes a complex interrelationship between physical symptoms and mental health in IBD.[14]




         Introduce appropriate measures for assessing the fatigue, pain and anxiety associated with living with conditions such as IBD, such as a fatigue rating scale[15]


Wider definition of toilet needs and incontinence in the descriptors


The current descriptors for toilet needs and incontinence are not fit for purpose. Concerns have been raised with this element of the assessment by multiple patient organisations since PIP’s inception. It’s disappointing that the DWP has not addressed calls for significant changes to these descriptors and supporting guidance.


The PIP guidance states: “This activity considers a claimant’s ability to get on and off the toilet, to manage evacuation of the bladder and/or bowel and to clean afterwards. This activity does not consider the ability to manage clothing, climb stairs or mobilise to the toilet.”


The guidance as currently written frames continence in very limited terms. Points are awarded based on the need for assistance and aids. This is a reductionist view of the wide range of toilet needs that exist and impact on individuals in our society, serving to exclude significant numbers of people who live with debilitating bowel conditions or symptoms.


Toileting and incontinence can have a significant effect on the lives of people with IBD which go beyond being able to get on and off the toilet. The reality, for many people living with these conditions, is that going to the toilet multiple times a day and managing accidents and/or incontinence can be frustrating, exhausting, and unavoidable, dominating thoughts and plans. It can affect a person’s ability to undertake everyday tasks, their mental wellbeing, energy levels and ability to complete tasks uninterrupted. It can also cause malnutrition and dehydration.


The descriptors and guidance fail to adequately capture this or to recognise the differences between types of toilet needs, including frequency of bowel movement, urgency, and incontinence. Each can have a distinct impact on people living with IBD, and their independence and participation.



person being aware.[16] As many as three in four people with Crohn’s and Colitis have experienced incontinence. Incontinence in people with Crohn’s or Colitis can be


caused by an overactive bowel and loose stools, increased sensitivity, damage to the muscles or nerves, surgery, severe constipation or perianal fistulas. Often it is linked to flare-ups, but for about one in ten, incontinence occurs even when their disease is not active.



People with IBD can experience each (frequency, incontinence, and urgency) separately, together and/or on an overlapping basis over time, during a flare and in remission. There is a significant psychological impact associated, which is not captured.


“Urgency does stop you from doing anything, it’s a real fear”


“If I don’t know where a toilet is I can’t socialise with people because if [incontinence] happens I’ll freeze, I won’t know where I’m going … it’s like your brain gets rewired to pre-plan everything and that kind of re-wiring that went on caused me to have a lot of anxiety, especially socially”.


NHS England’s Excellence in Continence Care states that “adult incontinence produces marked loss of self-esteem, depression, loss of independence, and can affect relationships and employment prospects”.[17] Studies of the experiences of people with IBD have found that adult incontinence can lead to an avoidance of routine social events or impairment of daily activities, using coping strategies such as only attending places with toilet facilities, reducing fluid or food intake or avoiding public places altogether. The fear of incontinence and its unpredictability also had a profound effect on day-to-day activities, emotional wellbeing, feelings of stigma and quality of life.[18],[19],[20],[21]






We have scoped alternative descriptors and can share this work in more detail to inform the basis of future work.

  1. Do the descriptors for ESA accurately assess claimants’ ability to work? If not, how should they be changed?


Again, we would like to see a wholescale review of the descriptors, in particular continence descriptors.


Graphical user interface, text, application

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The narrowly defined continence descriptor carries a high threshold to pass the assessment, as claimants must experience “loss of control leading to extensive evacuation of the bowel and or voiding of the bladder” or “substantial leakage of a collecting device sufficient to require a change of clothing”, “at least once a month”, to qualify for the full 15 points. This makes it more difficult for people to qualify for the benefit if constantly going to the toilet or incontinence are primary symptoms preventing them from working.

In the current WCA there is no 9-point option as had been the case previously, and 6 points are now scored where there is a risk of this happening “if not able to reach a toilet quickly”, which is not present in the 15-point scenario. Therefore, the regulations imply that the same person who managed to reach a toilet in time would be assessed differently if they did not,

although the individual and their ability to do so remains the same. This produces the bizarre scenario where individuals lose points in the WCA if they take active steps to ensure they are always able to reach a toilet quickly, which most interviewees described doing. A respondent to a Crohn’s & Colitis UK survey described it this way:

“I didn’t soil myself at least once a month. I find this a ridiculous criteria to judge anyone on. I would do almost ANYTHING to avoid soiling myself.”

The DWP handbook issued to assessors implementing the support group criteria states, in reference to the continence descriptor, that a person must experience extensive evacuation of the bowel “at least once a week”, in comparison to “once a month” for the work-related activity group (WRAG). The DWP acknowledges that, “unlike other [support group] categories, the disability described is at a higher level than the highest [WRAG] continence descriptor”.[22] Such disparity between WRAG and support group criteria is not applied to other symptoms, and this inconsistency is likely to disproportionately impact on people with Crohn’s and Colitis who often rely on this descriptor to pick up most of their points.


The assessment doesn’t take into consideration a person’s ability to sustain an activity, uninterrupted by their continence or incontinence. Continence should be considered in the same way that the WRAG recognises that an individual’s cognitive abilities affect or impede their ability in relation to “initiating and completing personal action”.


We do not think it is acceptable to argue that people should be expected to wear nappies or that they should have to put in place harmful coping strategies such as not eating before and at work or taking high levels of antidiarrheals in order to present at work. Using a nappy can be embarrassing and distressing for some. For people with IBD, the poo may also have blood and mucus and it may smell due to inflammation or infection.


The criteria assumes that the person can get to a suitable place to change their nappy, that they can shower or clean themselves and that there is a suitable place to dispose of the nappy hygienically and discretely - which usually, especially for men, there is not. It assumes that an employer will make allowances for someone to excuse themselves from meetings, or from the shop floor of a business or a conveyor belt of a factory, to do this at any time of a shift, without planning or warning, and possibly multiple times over the day, on a repeated basis.


It does not factor in how physically and mentally tiring it might be to go through this process multiple times a day. It does not consider the effect this will have on feelings of self-worth or how this may affect relationships with colleagues and associated stigma.









Health assessments in the devolved administrations


15. The Scottish Government intends to introduce its own assessment process for the Adult Disability Payment, which will replace PIP in Scotland from 2022. What could DWP learn from the approach of the Scottish Government?


The experience of Crohn’s & Colitis UK to date has been that the approach taken during the development of the Adult Disability Payment by the Scottish Government has been positively focused on ensuring that the new benefit provides support not only for disabled people, but also for those people with a long-term health condition who may or may not regard themselves, or be regarded by others, as being ‘disabled’.


The development process has shown an understanding that the ‘costs’ of disability or having a long-term health condition are not only financial, but also include the cumulative adverse effects arising from long-term exposure to pain, fatigue and anxiety. Adult Disability Payment is not being viewed, as one person involved in the consultation put it, as a “reward for inability”, but as part of a wider system aimed at supporting working age disabled people.


As part of this process, Crohn’s & Colitis UK has been engaged with Social Security Scotland over an extended period and on several levels to ensure that the new system meets the needs of people with IBD and other fluctuating conditions. This has included:


The following is taken from the Social Security Scotland website and indicates an approach based significantly on partnership and the use of existing background information to reduce


the need for face-to-face assessments which have been the source of considerable dispute and anxiety over an extended period with PIP.


Social Security Scotland will make decisions about entitlement for Adult Disability Payments using the applicants account of their circumstances and existing supporting information, where possible.


Examples of supporting information include:


We will significantly reduce the number of face-to-face assessments and will only ask someone to undertake a face-to-face assessment when it is the only practicable way to make a decision.[23]




Crohn’s & Colitis UK recommends that the DWP examine the approach taken by the Scottish Government in the development of the Adult Disability Payment in terms of:


December 2021

[1] www.crohnsandcolitis.org.uk

[2] About Inflammatory Bowel Disease | Crohn's & Colitis UK (crohnsandcolitis.org.uk)

[3] Mozdiak E, O’Malley J, Arasaradnam R (2015). Inflammatory bowel disease. BMJ. 351: h4416. Inflammatory bowel disease | The BMJ

[4] Luces C, Bodger K (2006). Economic burden of inflammatory bowel disease: A UK perspective. Expert Review of Pharmacoeconomics & Outcomes Research. 6: 471-482.

[5] Ghosh N, Premchand P (2015). A UK cost of care model for inflammatory bowel disease. Frontline Gastroenterology. 6: 169–174. doi:10.1136/flgastro-2014-100514.


[7] Nordic Social Statistical Committee, Copenhagen (2015). Sickness Absence in the Nordic Countries. FULLTEXT06.pdf (diva-portal.org)

[8] Fatigue in inflammatory bowel disease and its impact on daily activities - Schreiner - 2021 - Alimentary Pharmacology & Therapeutics - Wiley Online Library

[9] Crohn’s & Colitis UK (2014) Tackling Challenges in IBD Fatigue Report 2014.

[10] Focus on current and future management possibilities in inflammatory bowel disease-related chronic pain

Anna Zielińska, Maciej Sałaga, Marcin Włodarczyk, Jakub Fichna

Int J Colorectal Dis. 2019; 34(2): 217–227. Published online 2018 Dec 19. doi: 10.1007/s00384-018-3218-0

[11] Van der Have et al, 2015; Harbord et al, 2016

[12] The challenge of treating chronic pain in inflammatory bowel disease | British Journal of Healthcare Management (magonlinelibrary.com)

[13] Irving P, Barrett K, Nijher M, et al, Prevalence of depression and anxiety in people with inflammatory bowel disease and associated healthcare use: population-based cohort study

Evidence-Based Mental Health 2021; 24:102-109.

[14] Microbiota-gut-brain axis and its affect inflammatory bowel disease: Pathophysiological concepts and insights for clinicians

Emanuele Sinagra, Erika Utzeri, Gaetano Cristian Morreale, Carlo Fabbri, Fabio Pace, Andrea Anderloni

World J Clin Cases. 2020 Mar 26; 8(6): 1013–1025. Published online 2020 Mar 26. doi: 10.12998/wjcc.v8.i6.1013

[15] Do You Have IBD and Fatigue? Take the Test Here | Crohn's and Colitis UK (fatigueinibd.co.uk)

[16] Managing Bowel Incontinence in IBD | Crohn's & Colitis UK (crohnsandcolitis.org.uk)

[17] excellence-in-continence-care.pdf (england.nhs.uk)

[18] WJGPT-7-447.pdf (nih.gov)

[19] https://pubmed.ncbi.nlm.nih.gov/23624884/

[20] Experiences of faecal incontinence in people with inflammatory bowel disease: self-reported experiences among a community sample - PubMed (nih.gov)

[21] The lived experiences of people with inflammatory bowel diseases: A phenomenological hermeneutic study - Demirtas - - International Journal of Nursing Practice - Wiley Online Library

[22] Centre for Health and Disability Assessments, ‘Revised WCA Handbook’, 30.

[23] Social security: Disability Assistance - gov.scot (www.gov.scot)