Patients must enjoy a higher standard of care – from diagnosis to treatment
Patients can face a series of challenges across their care journey, with variation in care being a long-standing issue yet to be resolved, says Jon Neal | Credit: PA Images
Whilst treatment advances and new care models have driven some improvements over the last decade, there is still much more that needs to be done.
The coronavirus pandemic has rightfully taken centre stage this year.
But as the NHS focuses on its COVID-19 recovery plan and develops new, more patient-centric ways of delivering care, it is critical to use this opportunity to deliver improvements in underserved disease areas.
One such area is Inflammatory Bowel Disease (IBD). IBD, which includes the autoimmune disorders Crohn’s Disease and Ulcerative Colitis, can leave patients suffering from chronic pain and cramps, fatigue, diarrhoea, joint pain and swelling. Both conditions can lead to multiple hospital admissions and surgery, and symptom flare-ups are unpredictable.
Patients can face the prospect of managing a debilitating and life-long condition, which not only has a profound effect on their health and quality of life, but also has a significant impact on their families and wider society.
Delayed diagnosis results in higher likelihood of surgery, more expensive treatments, and a poorer prognosis.
IBD is more common than many may think; it affects an estimated 300,000 people in the UK (or, on average, around 460 people per Parliamentary constituency).
IBD also presents a significant cost to the health service. In 2013/14 the total cost of IBD to the NHS was an estimated £720 million. This means that the total lifetime care costs of an IBD patient is comparable to that of an individual with cancer or coronary heart disease.
These are not small numbers, yet IBD has been mentioned in Parliament fewer than 30 times over the last decade. With the prevalence of IBD rising, awareness and understanding should be higher than it is.
While there is no cure for IBD, there have been advances in understanding of IBD and in treatments.
There are now advanced therapies that can work to reduce inflammation and improve symptoms for patients who previously had no option but surgery.
But the pathway to getting appropriate treatment is often convoluted, with patients finding it difficult to receive a definitive diagnosis.
Delayed diagnosis results in higher likelihood of surgery, more expensive treatments, and a poorer prognosis.
Whilst treatment advances and new care models have driven some improvements over the last decade, there is still much more that needs to be done.
Patients can face a series of challenges across their care journey, with variation in care being a long-standing issue yet to be resolved.
While some areas of good practice and service innovation exist, more needs to be done to ensure that all patients enjoy a higher standard of care – from diagnosis to treatment.
There is a clear need for a national strategy which provides a framework for dedicated clinicians and the NHS to reduce variation across the system through a patient pathway which delivers improved patient outcomes and experience.
The recently updated NICE guidelines focused on new recommendations on maintaining remission after surgery and on inducing remission in mild-to-moderate Ulcerative Colitis, however this was only a part review.
The updated guidance failed to strengthen recommendations around supported self-management, shared decision-making, preventing and managing a flare and personalised care planning, as suggested by Crohn’s and Colitis UK and the British Society of Gastroenterology.
We need to adopt and implement a care pathway that establishes best practice at all stages of the patient journey.
To help resolve this, Takeda has worked with the clinical community to develop an Optimal Care Pathway which looks at the best practice standard of care at all points along the patient pathway.
It recommends all newly diagnosed IBD patients should be seen by an IBD multidisciplinary team, with regular follow-up reviews.
Decisions on treatments should focus on delivering optimal long-term outcomes for patients, with regular reviews and patients receiving the right information and support so they can make choices about the most appropriate treatment.
For many people living with IBD the need to shield for many months during this pandemic has been a heavy burden of anxiety and social isolation. But as we adjust to a new world, it seems like a positive time to think about what can be changed to make a tangible difference to patients.
We need to adopt and implement a care pathway that establishes best practice at all stages of the patient journey.
I urge politicians and policymakers to step into an IBD patient’s shoes and think about what can be done to help speed up diagnosis, optimise care and help more patients achieve long-term remission.
The next step needs to be action.
C-ANPROM/UKI/GI/0013
November 2020
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