Take a partnership approach
- The Patient Panel should be about patients and healthcare professionals working together to bring about improvements. It should model a relationship of collaboration and mutual respect. You should aim to have a healthcare professional from the local IBD service at every patient panel meeting.
- A Patient Panel should be chaired by a patient and the panel should be free to set its own agenda. It doesn’t need to respond to demands from the IBD service, Trust or Health Board.
Understand how the Crohn’s and Colitis service and the NHS works
- Training may need to be arranged for all Patient Panel members. This is where a service open day can be really useful. Sources of support include the King’s Fund and Chest Heart & Stroke Scotland, VOICES training.
Understand the different ways to improvement services
- Share experiences with the IBD team, offer new ideas or at a Health Board or Trust level and advocate for more funds or raising awareness of Crohn’s and Colitis.
- Try to represent the diversity of people using the service. Use a range of methods to reach beyond the Panel and think about how to be reach minority groups when you’re recruiting Panel members. See our Accessibility and Inclusivity Guide.
- Consider whether holding meetings is the best way to engage with people. See our Accessibility and Inclusivity Guide.
Running the patient panel
- Have a look at our template letter for ideas and inspiration around setting up your Patient Panel.
- If holding meetings, these are usually four times a year. Make an agenda, keep notes and an up-to-date contact list. Be aware of data protection laws when storing people’s details and communicating with them. The Patient Engagement Team can support you with this.
Think outside the box
- People who cannot or prefer not to meet face-to-face (e.g. because of illness or caring commitments) can still give valuable contribute to the Panel. Think about using email and closed social media groups such as Facebook and WhatsApp.
Think national and regional as well as local
- Could your panel get involved in national or regional activities to strengthen the voice of the Crohn’s and Colitis community? Does your panel have time and capacity for this?
- Have a work plan – based on the IBD Standards and / or the patient journey in your service. The IBD Standards explain what good care looks like. Data from the IBD Registry and audits can also help you understand the service and what needs to change. Keep checking your progress. Review the Panel’s achievements against the work plan every year and update it. Could the Panel take on more activities or do you need to focus on a key project?
- Take advantage of training and support from the Patient Engagement Team at Crohn’s & Colitis UK. Keep in touch with the team so they can share good practice and others can learn from your Panel’s experiences.
- Local relationships – keep your Crohn’s and Colitis local network informed and involved.
- Look for local allies such as:
- other users’ panels groups in the hospital
- Trust / Board management
- Foundation Trusts
- Patient Advice and Liaison Service (PALs), Our Voice (Scotland)
- Health and Social Care Partnerships Scotland.
What the Patient Panel does and doesn’t do
The primary purpose of a Crohn’s and Colitis Patient Panel is to discuss ways local Crohn’s and Colitis services could be improved - not to take direct action to improve services. Patient Panels don’t usually get involved in:
- direct service provision such as mentoring or buddying newly diagnosed patients
- producing leaflets or web pages about IBD services.
These activities may need to be done by others such as a Local Network (fundraising) or by the service itself. Nevertheless, a Panel could get involved in the discussions about the content of websites/ leaflets or the need for a buddying service.