What we did

The Western Isles Patient Panel was established in 2019 to enable people with lived experience to inform practice development and quality improvement. The Panel brings together representatives of existing Patient Peer Support Groups and Managed Clinical Networks, with a strengthened focus on disability and human rights. It also includes third sector partners supporting mental health, carers, advocacy, chest, heart and stroke conditions, and people living with dementia. The Panel covers all geographic communities across the Western Isles.

Each Patient Peer Support Group nominates 2 representatives to attend Panel meetings and raise issues on the group's behalf. This provides a two-way flow of communication and ensures representation is not person or issue specific. Panel members are able to discuss matters relating to both satisfaction and concerns with service provision, to ensure the patient voice is heard.

Prior to the pandemic the Panel held face-to-face meetings but since March 2020 they have been held virtually.

To support the planning of services restarting across the Isles (also known as remobilisation), NHS Western Isles sought the views and experiences of its communities. A survey was distributed via the Patient Panel to their respective Patient Peer Support Group members and to third sector organisations that had access to communities of interest, such as people living with dementia, learning disability or mental health conditions. The purpose was to assess how people living with long term conditions and who were shielding had been impacted by the pandemic, and to capture their experience of accessing health care during this time.

The survey was developed by staff and a Panel member, with final approval being received from the wider Patient Panel members. It was made available in both paper and online formats. Although there was a low response rate to the survey, 16 in total, these responses represented different communities of interest and so NHS Western Isles was able to identify themes which caused most concern – or could bring most benefit – to people.

In addition to the survey, a virtual island-wide Patient Panel meeting was held on Microsoft Teams, with representation from the geographic communities. It was also attended by one of the Board's Non-Executive Directors. This virtual joint meeting focused on the impact of the pandemic and was in the theme of 'The Big Lunch', with over 20 representatives attending.

Feedback from both exercises was shared with NHS Western Isles' Remobilisation Groups and covered what had worked well during COVID-19, what could have been better and what people would like to see continue. Key points included:

• Positive feedback on the level of communication and direct information from the Chief Executive Officer of NHS Western Isles regarding regular updates on the local impact of coronavirus.
• Feedback on the partnership of NHS Western Isles, Comhairle nan Eilean Siar (Western Isles Council), Third Sector and Volunteers and the community cohesion and how this can be built upon. Many people commented on how communities had come together with volunteer support - organised either at local level or through the multi-agency Supporting People Group - to arrange delivery of food parcels and/or hot meals to those shielding and the universal home delivery of prescriptions.
  • "What a great support system that you offer, this is what is needed universally and I am sure very much appreciated."
  • "Impressed with this, know that you are doing good work."
  • "What a lovely supportive group of people here."
• Shared information on how third sector agencies have used technology to extend the range and frequency of their service delivery and reach a wider geographic audience, despite COVID restrictions.
• Feedback regarding the value of the mPower Community Navigators, community workers who support people who are isolated to link with services in their community.
• The value of how mPower is helping people to use technology to look after their own health and care.

What worked well

Offering 2 methods of engagement, the survey and virtual meeting, helped to assess the current level of interest in ongoing community engagement during the pandemic. From verbal feedback it became apparent that people felt a need to engage and have their voices heard. The Patient Panel had always planned from the outset to bring geographic areas together for shared learning. This was accelerated due to the pandemic and provided communities with the opportunity and motivation to participate.

Disability Access Groups have told us that technology has levelled the field in terms of engagement as they could potentially feel left out in terms of ability to access meetings due the remote nature of our environment. Comments have included:

There have also been a number of positive observations comparing how the Patient Panel operated prior to the pandemic and how it is now operating.

Before the pandemic:

• The Patient Panel originally covered Lewis and Harris and Barra. Uist opted out as they felt their current engagement mechanisms met their needs.
• Meetings were held separately in each geographic area, quarterly in Lewis and Harris and 6-monthly in Barra.
• There were around 9 members participating in any Panel at any one time, covering issues such as mental health, continence care, disabled access and carers' issues.
• Engagement was community-based, within each island.

As a result of the pandemic:

• MS Teams allows a meeting to be organised covering the whole health board area, with the geographic communities all being represented to share their unique experience. This received positive feedback with a lot of shared learning.
• Panel members asked NHS Western Isles to increase the frequency of meetings from quarterly to monthly or 6-weekly, in the short term.
• The Patient Panel has grown and now covers the whole of the Western Isles. Patients and carers can join meetings to discuss matters of interest and issues across all geographic communities.
• Third Sector organisations on the Panel represent communities of interest, including mental health, carers, advocacy, chest heart and stroke and people with dementia.
• Approximately 31 members are now linking in via MS Teams.
• There is shared learning across the island chain and improved communication between patient groups and organisations.
• Over 20 requests have been received from communities and individuals for help on how to engage with health and care services.

The Patient Panel members promote patient and public partnership, providing a patient perspective on issues of discussion both within the Panel and in wider NHS groups on which Panel members serve.

Patients and carers have felt that they have had quick responses to any queries that they have raised. This has also led to new developments following direct feedback from groups, such as new information materials in relation to men's cancer.

Challenges

There was low representation from the Isle of Barra. We carried out additional localised marketing to encourage attendance at future meetings and are considering individual meetings to look at island-specific issues.

Some participants experienced technical difficulties during the initial MS Teams meeting. This was overcome in later meetings as people became more familiar with the format and felt more at ease. We also offered attendees the chance to take part in a test call beforehand.