Consistent care for IBD patients is crucial for a truly national NHS
Where services are poorly co-ordinated or leave gaps in the pathway, desperate and vulnerable people don’t receive the help they need. IBD patients must have access to consistent, quality care regardless of where they live.
This past year, our efforts have rightly been directed towards supporting the NHS to cope with the enormous strain of the Covid-19 pandemic.
The crisis is not over – but as the NHS begins restoring services, we must seize this opportunity to level up consistency in care, across regions and conditions. Inflammatory Bowel Disease (IBD) isn’t glamorous, but it’s a condition where the standard of care should not depend on where you live.
IBD, mainly Crohn’s Disease and Ulcerative Colitis, can leave patients with chronic pain and cramps, fatigue, diarrhoea, joint pain and swelling. This can require serious surgical intervention and subsequent stoma care, and the symptoms themselves can be life-altering. It also develops most frequently in younger age groups, affecting teens and young adults just when they are beginning to make their way in the world.
An estimated 500,000 people in the UK now live with IBD – and I am one of them. Thankfully, once stabilised, my condition has been well-managed and my symptoms mild, but this is not the case for everyone.
When I have a flare-up, within a matter of hours, I go from being a confident member of society holding down senior positions, to a fearful wreck confined in pain to my home
As a Parliamentarian with a commitment to delivering healthcare that works, I have sought to ensure IBD patients’ voices are heard, and I have advocated for improvements across the patient pathway.
The pathway is central to every patient’s experience. It determines how they receive a diagnosis and progress to treatment. It determines how that treatment is co-ordinated across healthcare settings, from primary and community care to specialist and hospital services.
But for too long, it has been a lottery for people with IBD. Where local services are excellent and delivered according to individuals’ needs, it works. Where services are poorly co-ordinated or leave gaps in the pathway, desperate and vulnerable people don’t receive the help they need. The NHS Long Term Plan highlights the need for personalised care for patients with long-term conditions, but sadly, for many, these words do not reflect reality.
Variation is a persistent challenge, with the level and quality of care largely defined by a postcode lottery. We cannot protest ignorance; variation was a key finding of the 2006 audit of IBD services, but the standards which were developed in response have been inconsistently implemented. A recent patient survey by Opinium Research again confirmed the problem, finding significant regional variation in the availability and quality of IBD services.
Although easy diagnostic tests are possible in primary care, swift diagnosis is not yet standard and many people suffer without a diagnosis for months or even a year. Once diagnosed, patients should have immediate access to a specialist IBD nurse to manage both flare-ups and the chronic condition – but over a third of patients go without.
When I have a flare-up, within a matter of hours, I go from being a confident member of society holding down senior positions, to a fearful wreck confined in pain to my home. A specialist nurse is my lifeline. It’s unconscionable that some patients don’t have access to that lifeline because of their postcode.
It is time for change. The unmet need is growing with the rising prevalence of IBD. Existing examples of best practice provide the solution. A framework to improve consistency across the system would deliver improved patient experience and outcomes, reduce the cost of care, and relieve pressure on NHS services. Patients must have access to consistent, quality care regardless of where they live for the ‘National’ in NHS to ring true.
As we gradually broaden our focus to the long-term restoration of the NHS, we must give due consideration to the long-term health of those living with chronic conditions. Too long have these patients been forced to live with less; and there are 500,000 reasons to change that.
Baroness Young is a Labour member of the House of Lords.