The West Yorkshire and Harrogate (WYH) Cancer Alliance community patient panel, last met in person in March 2020 at John Lewis’s Community Hub in Leeds. It was very much business as usual, the meeting was well attended by patient members, who on the day engaged in an energetic discussions and gave feedback to help develop Quality Markers for NHS Rapid Diagnostic Centres. At this point in time, there had only been a few cases of Covid-19 in the UK, the impact hadn’t yet shocked the nation and we were still in full swing as a patient group meeting up on a regular basis.
Only a couple of weeks on from this and it was a very different picture! Our nation was placed on lock down, staff from all sectors were instructed to work from home if they were able and significantly, cancer patients would be required to shield themselves from this rapidly escalating virus that has since claimed so many lives. It was clear that this pandemic wasn’t going away any time soon and as a cancer specific community group, we would need to find other ways of meeting and engaging with our members.
After positive discussions between panel members, Healthwatch Wakefield and the WYH Cancer Alliance, we decided to take out a one year Zoom conferencing plan. This would enable the panel to continue to meet face to face but in the virtual world and crucially, it would allow us to continue assisting the Cancer Alliance with ongoing project work and discussions in order to continue to support local cancer patients.
To get us off to a positive start, on 9 April, we held our inaugural community patient panel check in and catch up Zoom meeting. This meeting gave panel members the opportunity to get used to using the technology and to share a bit about how they’ve been managing in the wake of the Covid-19 crisis. The initial response was excellent with over 17 panel members joining the online meeting, exchanging stories and sharing some of the more positive experiences they’d come upon whilst being confined to house and home. What was clear during this initial meeting, was that our members felt uplifted, through being able to meet face to face once again and being able to freely share what was on their minds. As a group we now had something positive to look forward to, in resuming panel meetings and in supporting the ongoing the project work of our local Cancer Alliance, to help and make a difference to cancer patients and services across our local areas.
Following on from this, we held several further community patient panel Zoom project meetings which took place on the 30 April, 7 and 28 May 2020. During these meetings, panel members were able to provide verbal feedback and patient experience, helping to develop cancer projects for work ongoing. Projects included; overcoming barriers and increasing access to support for hard to reach groups at the end of cancer treatment and delivering personalised care and follow up support for patients across West Yorkshire and Harrogate.
A typical community patient panel Zoom meeting involves 15 – 20 patient members logging in and greeting each over their webcam in a gallery view which puts the whole group in face to face contact. This is followed by a warm welcome from myself as the panel coordinator and then the introduction of our Cancer Alliance guest speaker, who will in turn relay some important facts and background information about their specific cancer project. This lays out the foundation before the main panel discussion takes place. It’s then over to our patient panel members to share their experiences, thoughts and ideas and importantly, to provide the Cancer Alliance with essential feedback which will help to influence a local NHS cancer project, service or aspect of care for the benefit of local cancer patients.
At our May meeting, the panel held a very engaging Zoom discussion around public confidence in accessing cancer services across our local areas. Evidence has suggested that patients have been worried about putting an additional burden on the NHS, or they are afraid of contracting the virus during the course of their treatment. Therefore securing public confidence in the availability and safety of cancer care is essential to ensure that those who need to access services, feel reassured to do so. Twenty panel members joined in for this discussion, we divided them into breakout groups of five and asked each group to answer a series of questions designed to gather essential patient feedback that could potentially be used by the Alliance to address the identified areas of attention – the ‘key lines of enquiry’.
Following the meeting one panel member commented “I’d just like to say what a great call this was, well organised and the group chats worked perfectly ……. and ours was led very well by our ‘leader ’. Everyone respected people’s views and some great feedback and ideas were shared. I hope that all the work you are doing along with our small contribution, will help those who need It, including us all too.”
In addition another member stated “Today’s meeting was one of the best and has given me so much more info to present to Mid Yorkshire, so thanks again and well done. I know the Cancer Alliance will really appreciate all this work and the difference it is making so well done.” Receiving this positive feedback from panel members is inspirational and gives a good indication that were getting it right in terms of our engagement.
In addition to the Zoom panel meetings, each week I’ve been keeping in touch with panel members by phoning round, having a friendly chat and catch up and being there to listen to some of what they have experienced with their own cancer treatment, check-ups and other related circumstances . This close level of engagement has been particularly welcomed by members who are more isolated.
Our patient panel members have also taken part in digital work collaboration over email. An example of this, was where over a dozen panel members provided feedback and suggestions into the production of an NHS guidance leaflet document, which will be used to support cancer patients preparing for surgery during Covid-19.
Cancer Alliance Optimal Pathways Group Project Manager, Charlotte Houston, confirmed that many of the suggestions made by the panel as part this work, were incorporated into the final leaflet and overall their input had been a great help and support.
In addition to the main community patient panel Zoom meetings, I’ve also been arranging one to one Zoom meetings with individual members, to help them get to grips with using the new technology and who might otherwise have found it hard to engage through this means. This have proved popular and Eric, our oldest panel member, has benefitted from the additional support offered to get involved online.
Looking back over the past few months, it has been a really challenging time for cancer patients and for our panel members, but embracing these new technologies and finding new ways to engage online has been met with a very positive response and there is a feeling we a making real progress, as we continue to work in integrally with the West Yorkshire and Harrogate Cancer Alliance.
We are now well into the summer of 2020 and it’s still rather uncertain as to when cancer patients and community groups may be able to meet up again in person. However, we will no doubt look forward to getting back to business as usual, and until this point, our community patient panel will continue to benefit from digital conferencing as a new found platform to keep us in touch and enabling us to make progress. Importantly, we will continue to support the WYH Cancer Alliance with further cancer projects, aimed at improving care and services for patients across our local areas.
Fraser Corry
Panel Coordinator