Inflammatory bowel disease care should not be a postcode lottery
4 min read
We will never forget the last two years. Coronavirus – the loss of life, the lockdowns – and the long-term effects that we are only just coming to understand. Without minimising this, there are other chronic illnesses, and the people living with them for many years have not had their voices heard.
One of these conditions is inflammatory Bowel Disease (IBD), a term used to describe two main conditions: Ulcerative Colitis and Crohn’s Disease, although it is also possible to obtain a diagnosis of unspecified IBD.
People with IBD often face uncertainty and unpredictability with their condition, and experience symptoms like diarrhoea, cramping pain in the abdomen, loss of appetite and anaemia.
I am not medically qualified, but I can tell you from experience how these symptoms can be viewed through a simplistic lens until the patient receives a diagnosis. It can be stressful navigating that uncertainty, living and working, while also looking for answers as to what is happening inside your body.
If your condition is not well managed, or you lack the necessary support, it can make working life considerably harder
New research from Demos, commissioned by Takeda UK, has found that IBD can have a negative impact on the careers and earning prospects of those living with the condition in the UK. This much-needed research aimed to explore the economic effects that arise from IBD. This included asking individual people with IBD about the effect it had on their working lives and estimating the financial losses to employers from staff taking time off from work due to IBD.
Although IBD can occur at any age, people most often receive their diagnosis between the ages of 15 and 35 – so they are of working age. The unpredictability of IBD can have a serious impact on your daily life because you cannot always know when a flare-up will strike. If your condition is not well managed, or you lack the necessary support, it can make working life considerably harder.
It can be especially difficult for those of us with long-term conditions if the onus is placed on the individual to explain and ask for the support, rather than it being readily available. As a sufferer of a chronic pain illness fibromyalgia and arthritis, to the outside eye I look fine – with the war paint on and a smile on my face. However, what those eyes do not see is the energy-zapping pain, the fatigue; what’s more, to be treated this way really does have an impact on your mental health.
For those living with IBD, the insufferable pain, discomfort, nausea and embarrassment – compounded by the difficulty in convincing family, friends and colleagues in the workplace that this is more than a tummy bug or wanting a ‘duvet day’ – it’s quite the challenge, physically and mentally.
And it can hold people back. Demos’ report finds that nearly half (49 per cent) of people they spoke to had been made redundant because of their condition, while 46 per cent had decided to leave their job because of it.
This is a timely discussion to have, as we have all had to change our working lives over the last eighteen months, and flexible or hybrid working patterns become more common. The chance to work flexibly can help so many people, especially people with long-term conditions like IBD, so that they are enabled to reach their potential.
However, first we need to ensure people with IBD receive the right standard of care and reduce the unwarranted variation in care patients receive because of where they live.
It’s vitally important that we level up IBD care, as no one should have to contend with a postcode lottery to get the right treatment. More broadly, we need to look holistically at how we can support people with long term conditions like IBD to engage in the workplace – this must include having access to the best care from the health system, and support from the world of business.
The landscape of our medical sciences is moving constantly – we have only to look at the turnaround for Covid. Nevertheless, for people living with IBD, the pace does not feel the same. It is important for us as Parliamentarians to bring this disease back on to the table, to highlight the need for greater support for those with chronic health conditions in the workplace, so we can truly understand the impact these conditions have both on individuals and wider society.
Baroness Newlove is a Conservative peer.
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