While the world’s attention has centred on the coronavirus pandemic, the focus of the NHS, the media and politicians has rightly been on hospital bed capacity, testing and, more recently, vaccination roll-outs. But it is important to remember that those living with long-term conditions continue to manage their symptoms.
Delays in diagnosis and screenings, and impact to care in diseases such as cancer have been much-discussed.1 But delays are also having an impact on patients with lesser-known chronic diseases like Inflammatory Bowel Disease (IBD), where waiting for diagnosis and treatment can have a significant negative impact on their quality of life, as well as on the success of future treatment plans.2
These delays not only affect patients, they can have implications for the wider health service too; early diagnosis and rapid transition through the care pathway can deliver better outcomes and savings for the NHS.3
As we endeavour to look beyond the immediate challenges and towards placing our health service on a more sustainable footing, it seems right to also look at the ways in which we might make positive changes that will lead to better long-term health for those living with IBD.
IBD and the patient experience
Crohn’s disease and ulcerative colitis, which are the two main forms of IBD, affect an estimated 500,000 people in the UK.4 It can leave patients with chronic pain and cramps, fatigue and diarrhoea. Experiencing these symptoms can be life-altering or limiting.
While there is no cure for IBD, there have been advances in treatments. Medicines can not only ease symptoms, but also act to treat the underlying disease in the gut, which in turn gives patients the best chance of achieving long-term remission, meaning that their condition is stable and symptoms are reduced.
But the pathway to getting appropriate treatment can be convoluted, with patients often finding it difficult to receive a definitive diagnosis. This can be confusing and stressful. But more than that, the longer it takes to get a diagnosis, the longer before a patient can begin treatment that will make a difference.
We recently spoke to patients from across the country and worked with leading pollster Opinium to simultaneously conduct a survey, so we could better understand IBD patients’ experience of their care and the physical and mental impact.5
Many patients told us of long delays and multiple trips back and forth to the GP and hospital in search of a diagnosis, hoping for answers. We’ve heard about misdiagnoses, with some being told they had coeliac disease, irritable bowel syndrome or even an eating disorder instead.
We found that many experienced further delays as they progressed through the pathway. Beyond taking, on average, nearly a year to reach a diagnosis, it then takes patients even longer to find a treatment plan that can alleviate the impact of their condition on day-to-day life.
Not only can these delays have a physical impact, such as causing damage to the gut, there is also an emotional, social and economic toll. Time spent waiting for diagnosis can also have a serious negative impact on mental health. We spoke to one patient, Emily, who told us how it affected her social life and relationships: “I became a bit of a recluse. I stopped going out because I was scared that I might have a bowel accident. If I did go out, I had to plan my routes around being able to go to the bathroom. I lost all my friends. People that I was friends with got frustrated because I would cancel plans. They felt like their social life was impacted by me.”
It can also make it difficult to hold down a job, which can then have a knock-on effect on relationships with friends and family. Some patients feel aggrieved that they have had employers who have not understood their condition and its impact. Some have lost jobs, or say they have been forced to leave due to IBD flare-ups.
Our survey follows existing research that shows that one in 25 individuals who are eventually diagnosed with IBD have endured gastrointestinal (GI) symptoms such as diarrhoea, abdominal pain or cramping for at least five years before diagnosis.6 This is despite there being set guidelines that patients experiencing GI symptoms for more than six weeks should be referred to a gastroenterologist for timely specialist review within four weeks.7
The need for a national strategy
What is clear is that delays to diagnosis, and to finding a stable treatment plan that allows a patient to lead a full life, leave a mark. Consistency in applying standards of care across the country is strongly needed, in the form of a national disease strategy that sees the implementation of national standards driven through the system.
That’s why at Takeda we have launched the 500,000 Reasons Why campaign, to highlight the need for more consistent care for IBD patients across the country. Ensuring national standards are implemented consistently across the health system will have a positive effect on IBD care and patient quality of life by ensuring that unnecessary delays are not the norm. It will also ensure patients have access to the right specialists, helping them to feel supported and empowered, and encouraging them to be involved in treatment decisions.
IBD is a chronic, often life-long, illness but with the right treatment, patients can enter remission. As it stands, less than half of patients we surveyed described their current situation as being in remission. Taking a longer-term view of care – and considering the positive impact on patients’ lives that finding a successful and sustainable treatment plan can have – reaps rewards for patients, the healthcare system and wider society.
If we can embed best practice, there should be no reason why more patients are unable to reach remission quicker, and enjoy the benefits to their physical and mental health, as well as their work and relationships.
For the NHS, this can ultimately help to reduce pressures. If more patients are able to manage their conditions themselves at home, the need for hospital admissions is reduced, which can only be helpful at this time of extraordinary pressure on beds and resources.
Whilst good practice in IBD care exists, we need a more consistent approach to ensure that all patients enjoy a higher standard of care – from diagnosis to treatment. By targeting investment appropriately, we can help to avoid costly hospital admissions, improve services and – most importantly – improve the quality of life for patients.
Craig Adkins is business unit director GI at Takeda UK
References
1. Cancer Research UK, Cancer screening and coronavirus (COVID-19) https://www.cancerresearchuk.org/about-cancer/cancer-in-general/coronavirus/cancer-screening
2. D-W.Lee, J.S.Koo, J.W.Choe, S.J.Suh, S.Y.Kim, J.J.Hyun, S.W.Jung, Y.K.Jung, H.Yim, S.W.Lee, Diagnostic delay in inflammatory bowel disease increases the risk of intestinal surgery, World J Gastroenterol. 2017, doi: 10.3748/wjg.v23.i35.6474
3. Patient Knows Best, Better care leads to savings in Inflammatory Bowel Disease https://patientsknowbest.com/2019/10/17/better-care-leads-to-savings-in-inflammatory-bowel-disease-surrey-and-sussex-healthcare-nhs-trust/
4. Crohn’s and Colitis UK, About us. Last accessed March 2021: https://www.crohnsandcolitis.org.uk/about-us
5. Polling undertaken in December 2020 by Opinium Research of 250 people living with IBD, commissioned by Takeda UK Ltd
J. Blackwell, S.Saxena, N. Jayasooriya, A Bottle, I Peterson, M Hotopf, C Alexakis, R C Pollok, Prevalence and duration of gastrointestinal symptoms before diagnosis of Inflammatory Bowel Disease and predictors of timely specialist review: a population-based study, Journal of Crohn’s and Colitis, jjaa146, https://doi.org/10.1093/ecco-jcc/jjaa146
6. IBD UK, Timeframe for referral https://www.ibduk.org/ibd-standards/pre-diagnosis/timeframe-for-referral
7. Kapasi R, Glatter J, Lamb CA, et al. Consensus standards of healthcare for adults and children with inflammatory bowel disease in the UK. Frontline Gastroenterol. 2019: flgastro-2019- 101260. doi:10.1136/flgastro-2019-101260
