Crohn’s and Colitis UK Partnership Project Review of 2018

Our Crohn’s and Colitis UK Partnership Project review activities over 2018 for our annual report.

The ALLIANCE’s partnership post with Crohn’s and Colitis UK (this link will take you away from our website) has gone from strength to strength in 2018, continuing to push for the recommendations from “Scotland Leading the Way; the Blueprint for Inflammatory Bowel Disease in Scotland” to be implemented.

The postholder continues to support and develop the Scottish IBD Nurses Network, a network of all specialist nurses in Scotland with a caseload of Crohn’s Disease and ulcerative colitis patients. The Network submitted written evidence on the Health and Care (Staffing) (Scotland) Bill, quoting the caseload for IBD nurses recommended by the report “Modelling Caseload Standards for IBD Specialist Nurses in the UK”. Scotland lags well behind this recommended staffing level. The Network is looking to develop a national shadowing and mentoring system to support learning for nurses new to the speciality.

The Cross Party Group on IBD held three meetings in 2018 covering self management and psychological support, IBD nursing, service redesign and technology. Actions from these meetings have included letters to the Cabinet Secretary for Health and Sport, the Minister for Mental Health and the Chief Nursing Officer. The group will be holding an MSP sponsored exhibition in the Parliament in February 2019.

The Cross Party Group has also led to the formation of a small group of paediatric IBD clinicians. The group is taking forward work on a number of recommendations from the IBD Blueprint including the lack of 16-24 transition services and the sudden cut-off of psychological support at age 16.

We continue to work closely with  Scottish Government the Modern Outpatient Programme and are moving towards piloting a new model of care in the NHS Borders IBD service; a community –based IBD Nurse Service which would enable patients who are in remission and on certain treatments to access support from a nurse via a community hub, avoiding unnecessary  visits to hospital and freeing up capacity for more complex patients.

Together with Scottish Government colleagues, Crohn’s and Colitis UK arranged a multi-stakeholder IT roundtable in November to reach a shared understanding of current IBD-related innovation work, including SBRI challenge entries and My IBD Portal and to map these initiatives against the patient journey.

As part of this partnership with the Modern Outpatient, new self management tools- a flare-card and individualised care plan- have been codesigned with people living with Crohn’s and Colitis and health professionals. The tools will be tested with a cohort of 100 people living with IBD in three services before national roll out later in 2019.

The Health Policy and Public Affairs Officer, although based at the ALLIANCE works within the Health Service Development Team at Crohn’s and Colitis UK which is currently undergoing a re-structure and re-focus under new Director, Rukshana Kapasi. Key areas of work in Scotland, particularly around influencing stakeholders and developing new models of care will continue in 2019.

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