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2 November 2016updated 04 Sep 2021 5:04pm

Patient empowerment and care in an appropriate setting

At the centre of the ‘RightCare’ approach to healthcare sits a focus on delivering increased value – but what does this mean for people living with Inflammatory Bowel Disease (IBD)?  

By David Barker

Ask ten people working within the NHS what they understand by the term ‘value’ and you are likely to get a variety of different answers. In the main most would probably link the term ‘value’ with the key issue of ‘money’. But does it always have to be this way? At Crohn’s and Colitis UK we believe that value comes through a variety of routes – not least how patient and clinical teams are working in effective partnership together.

Our belief is that to get the best out of the healthcare system, patients need to be empowered and supported to work in true partnership with their healthcare professionals. Value is derived from the extent to which patients are mobilised to embrace shared decision-making and we want all patients to be active and fully informed participants in their own care. Patients get best value when they are able to make fully informed choices about investigations, treatment and care that reflects what is important to them.

Sometimes living with IBD is frustrating but having the right information and support has helped me to feel more in control of my life” Melissa, 44, diagnosed with Crohn’s Disease in 2000.

Information from patient groups can help to bring this value by empowering patients to work effectively with their local health service to manage their condition and care.  Our patient guide My Crohn’s and Colitis Care does exactly that. It draws on the UK IBD Standards, which were developed by a wide range of health professional and patient organisations, to set out what a good quality IBD service should look like. Our patient guide compliments the UK Standards and outlines the top ten essentials of a good IBD Service including the need for patient-centred care that is responsive to individual needs and preferences, and supportive of shared decision-making.

“Empowering yourself with the right advice and knowledge about IBD is so important to your health and well-being, both physically and mentally”  Zaineb, 22, diagnosed with Crohn’s Disease in 2010.

This shared responsibility extends outside of the clinic and we must never forget the ‘other 8,000 hours’ which represents the time that people with IBD spend in their own homes, at work or school, socialising, having a family life etc.  – in other words getting on with their lives and managing their condition away from a clinical setting. 

However, living with a fluctuating condition such as IBD presents additional challenges for ‘getting on with life’ and means that patients need the support of a number of different healthcare professionals and services at different points over time.  Many IBD services now offer a dedicated IBD telephone and/or email service which so many patients describe as a ‘lifeline’. This type of service combined with specialist nurse provision is adding tremendous value. It provides speedy access (a critical component when a patient is experiencing a flare up), reassurance, enables better self-management and in some cases avoids the need for a GP or clinic appointment or a distressing visit to A&E. Inducing and maintaining remission, providing fast track access when required and keeping patients out of hospital are clearly all critical goals in the delivery of the IBD service. 

In some areas, homecare services are currently being developed to offer certain services at home, thus avoiding the need to attend a surgery or hospital clinic. For example, some patients can choose to receive their treatment at home, have routine blood tests taken, receive reminders of when to take their medication by text message or receive emotional support or advice on lifestyle changes. All these initiatives add ‘value’ but need to be properly aligned with a service that enables speedy and direct access back to specialist advice and support when it is required.

So, in brief our future ambition around value is quite simple. It is one whereby patients and healthcare teams work seamlessly, hand in hand to recognise and deliver gold standard partnership working. It is a 50:50 deal, no more, no less but if it is achieved we believe it will add increased value across the board.

David Barker is the Chief Executive of Crohn’s and Colitis UK. He wrote this piece as an outcome of the roundtable discussion entitled Thinking Outside the Box: Patient Empowerment and Commissioning for Value in Chronic Care. The roundtable meeting was funded by AbbVie and organised by AbbVie and the New Statesman.

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