CamPain – Our Story
An account of how this group started, developed and where we are now.
Pain Space – a Patient Initiative
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Before the group CamPain was started, there was already a patient inspired support group in Camden – ‘Pain Space’. Devised and established by patients, these NHS run sessions created an environment in which further patient-led organisation could take place. This project began with a diverse group of twelve people undertaking a pain management programme (PMP) with Camden Pain Assessment and Management Services (CPAMS) in January 2017.
Patient organiser Santo takes up the story,
As the PMP progressed and the group had started to appreciate the sharing of experiences and the support derived from one another, I initiated a discussion about how we could maintain support after the programme. One idea was to set up a WhatsApp group… but we all felt that it would be more beneficial if we could meet somewhere every few weeks to share knowledge and experiences of living with chronic pain. Group member Annette suggested approaching a local Doctors’ practice where they had a room available for local groups to run health classes. We contacted the James Wigg Group Practice in Kentish Town… However, they had concerns about potential health and safety and safeguarding issues with individuals attending without supervision by a clinician. We discussed this with the clinical team running the PMP; a senior Physiotherapist offered to liaise with the GP Practice. The outcome was positive, however it meant that the Pain Management Team would have to take over the running of the monthly meetings/drop-in sessions. Pain Space, a patient support group linked to CPAMS, was born.
Pain Space Model
This group started meeting on October 9, 2017, adopting a format which in essence persisted throughout its existence.
The aim was to support and be supported by others living with chronic pain. A physiotherapist or a psychologist would steer the two-hour sessions, revisiting strategies learnt on the PMP. Typical meetings included breathing and gentle physical exercises (Yoga), sessions on mindfulness, sleeping issues, medications, goals setting, and managing flare-ups et cetera. It would follow group work, providing the opportunity individually to feedback on how we had coped during the previous month(s); or to do role-play/listening exercises as a means to support one another.
At regular intervals, the clinical team would survey the group to identify any particular needs or topics that could be introduced in future meetings. The monthly sessions were well attended as there were obvious benefits from the support received by peers as well as from the clinicians. Other chronic pain sufferers who had completed a Pain Management Programme could join Pain Space at different stages during the year. Pain Space in its original format continued to operate until the first lockdown in March 2019.
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Origins of CamPain – the ‘Patient Pain Support Group’ (PPSG)
Thanks to the patient inspired project Pain Space there was a platform and opportunity for further patient initiatives. Several of us who attended regularly began to think that it would be helpful to develop additional, patient-led, support amongst ourselves. This began with the creation of a Facebook group in March 2018, followed by a rudimentary website (as some people objected to Facebook on principle). But these attempts gained little traction and few people joined.
Another proposal was that we should try to start our own, patient-led, meetings to complement the existing clinician-led (though patient initiated) ones at Pain Space. This was felt to be a good idea for several reasons. The existing meetings, though very useful, were not sufficiently regular to provide sufficient ongoing support – monthly intervals are a long time when you are coping with chronic pain, especially if you miss one, as frequently happens due to flareups, hospital appointments et cetera. Having an extra meeting a month could potentially compensate for that. Additionally, patient-led meetings could be more tailored to what we wanted, in particular providing peer-to-peer support which, though a component of official sessions, was never their main focus.
From Pain Space to Our Space
Feelers were put out to several potential providers of meeting space. Fortunately one of the first ones contacted, the charity West Euston Partnership (now Project), responded very positively and invited us to visit and talk. Their director, Sharon Gordon, was keen to help, despite the group’s lack of funds. She was able to find a way to make a space available to us for free on a monthly basis. Thus we gained access to the fantastic Hpod facility (‘Health Pod‘) near Euston. This was a wonderful development for us: the Hpod is purpose-built as a community space for health and well-being activities. It has a large airy studio space with galley kitchen to the side and an attached private room. Communications are good as it’s close to bus stops and Underground stations.
Getting Organised
At this stage we decided to formalise ourselves into a community group and adopted the name Camden Patient Pain Support Group (PPSG) which, though not elegant, had the merit of describing who we were and what we did accurately. It also clearly distinguished us from the Camden Pain Service (then called Camden Pain Assessment and Management Service – CPAMS). The PPSG also created a constitution with the original 4 organisers as the signatories. So the group was born, its purpose clearly stated as being to facilitate peer-to-peer support amongst chronic pain patients who had attended pain management programmes and were Camden-based.
First Contacts
Our first meeting took place at the Hpod on October 17, 2018, with seven people attending. There was no particular plan for the format of the meeting, it was felt that we should just get together and talk amongst ourselves. This would enable us to work out the best way to organise meetings in the future. We ended up having a loosely facilitated discussion about a pain management topic. It was felt to be a success and plans were laid for the next meeting. It was decided that these meetings would work better if we facilitated them, with the organisers taking it in turns to do this. We were interested in talking about pain management primarily at this stage in the group’s development. We were also putting an emphasis on inviting speakers relevant to pain management. So many of these early meetings consisted of discussing a prearranged topic and/or having a guest who would speak or give a demonstration. These included the Patient Director of Camden MSK Services (who manage the Pain Service), a gentle yoga therapist and a tai chi teacher. So at this stage the PPSG was in some ways trying to replicate what the NHS Pain Space sessions were doing, although with more time allocated for just socialising over tea and coffee.
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An Increasingly Social Network
Meeting attendance in our first 16 months varied from four to ten, with an overall reach of about 20 people attending at least one. The culmination of this stage was a magnificent group party, held to celebrate our first anniversary in October 2019. Supported with publicity and a catering budget by Cristina Serrao, the Patient Director of Camden MSK, this was very well attended and much enjoyed by all. In addition to 12 of the group’s members, we had six guests, including representatives of Camden pain services, the VCS and Camden and Islington Mental Health Trust. This clearly signposted to us something that had already become increasingly apparent – that we should focus on what we did best, providing peer-to-peer support through social functions, rather than trying to replicate what NHS, clinician-led meetings did. So we started to tilt our meetings much more towards being informal get-togethers. And that end we organised an evening meeting at a pub quiz in December 2019, something which was well attended and enjoyed by the group. We were planning more such gatherings, in particular at a community club in Tufnell Park run by a group member, when the pandemic struck and face-to-face meetings had to be suspended.
Progress by Lockdown
In terms of organisation, communication and information sharing, we were entirely reliant on email at this stage. Notice of meetings and sharing of useful information was all done through the group email. This meant there were quite a lot of emails and that some of them were rather long (as any relevant info coming to the organisers was passed on). This felt rather clunky and inefficient so efforts were made to try to establish a website. Attempts by the organisers proved unsuccessful and so we reached out to solicit help from outside agencies. We tried to contact volunteers who might wish to help and there were some promising leads. Ultimately these did not progress, leaving us without a digital presence. This was disappointing because we needed this we wanted to establish our credentials when contacting other agencies (NHS, charities, donors) who might be in a position to help us. But mostly, we wanted to be able to use it to share resources and notifications with our own network. So at this stage the group was doing very well in having created a good face-to-face structure and built a real network of patient peer supporters in Camden. But there was more to do on our digital development.
Lockdown Challenge
For a group based primarily on face-to-face meetings, lockdown was obviously a challenging situation for us. Our regular meetings at the Hpod had had to be suspended until further notice. We were really left at this stage with just emails. As indicated, there were already probably too many of these and they were too long. We really needed to find alternative ways of communicating and supporting each other. In the first instance, WhatsApp came to the rescue. Obviously a lot of people were already using WhatsApp by 2019 but we hadn’t considered using it for group communication and many of us were unfamiliar with it. It proved a relatively easy step for us to establish a WhatsApp group (January 2019, set up by organiser Steve) and this quickly became our staple channel of communication. Many of the group joined and there was lively interaction as well as easy exchange of useful information. More recently (August 2021) we established a second group which was a purely one way channel for providing information, something which was preferred by those who don’t like a lot of notifications. WhatsApp has been a good tool for the group although we have refined our use through experience by establishing and clarifying some basic rules of engagement.
Zoom Boom
Online video meetings obviously became prevalent under lockdown very quickly. Our group were wary of doing this, partly because of digital hesitancy, partly because our identity was bound up with being a face-to-face group. It wasn’t clear what online meetings would consist of or how they would be run. Fortunately the decision was taken out of our hands with the establishment by Camden MSK Services of a Lockdown Group in May 2020 (discussed in more detail elsewhere). This organised twice-weekly meetings of MSK patients and healthcare professionals on Zoom and ran until October 2020. From our group’s perspective, the important thing was that it was co-produced/facilitated by group organisers and largely attended by members of our network on the patient side. This meant that when it wound down, we had already established the experience and routine of having regular Zoom meetings.
A Hybrid Approach
So from November 2020 until the present (December 2021) our group has held weekly online, drop in, social meetings, lasting an hour formally but often up to 90 minutes in practice. This is now the principal way in which our group ‘meets’ and it has been a success. Furthermore we have diversified, holding special online meetings about pain management topics, with PowerPoint presentations followed by group discussions. These are less frequent but still well attended when held. Zoom has also made it easier to run the group as the organisers can now hold planning meetings there rather than face-to-face. So it’s been broadly positive. But it must be acknowledged that for some of our group this is not the case. There are members who enjoyed face-to-face and have decreased their engagement. We hope that the revival of face-to-face meetings, now taking place, will encourage them to come back. Incidentally, even those meetings now have a digital component, with some time set aside for a hybrid meeting (suggested by group member Simon), allowing those who can’t get to the Hpod to be connected. So we see our future as a blend of physical and digital meetings, having the best of both worlds.
Information Share
Originally, as mentioned, we relied on email to share the abundance of interesting and relevant information that came to the organisers’ attention. This was not satisfactory and a solution was suggested by group member Siddiqa, namely that we have a regular newsletter, effectively condensing all this information into a single document which would be more manageable than a sprawling email. It was a commonsense idea and we adopted it immediately. The first such newsletter was launched in August 2020 and was a success with the network. Features include updates on what’s been happening with the group, upcoming meetings and seminars that might be of interest, opportunities to take part in research or surveys, and also regular items from group members including features on our pets, helpful gadgets and pain management hacks. Initially it was formatted as a simple MS Word document but it’s now had a design makeover (thanks to organiser Rachel) and been transformed into a much more stylish presentation, utilising MailChimp which is great for creating templates and managing mailing lists.
Website
Earlier attempts to build a website using WordPress had proved fruitless so we were happy to take advice from a helpful partner (Leva Clinic) and switch to using Wix instead. This proved to be intuitive and relatively straightforward, certainly not requiring any coding experience! Group member Rachel took on this task and rapidly produced a good-looking, functional, basic website for us in Spring 2021. Luckily we already had plenty of content prepared and this was swiftly slotted in to the site. A second phase of site building and content upload is taking place in Winter 2021. So far it’s been an excellent way to raise the group profile, providing a landing page and point of contact. It’s now being turned into a richer pool of pain management resources for group members and indeed anyone who wants to access it.
Better Branding
All this digital activity prompted the group organisers to review the now rather tired looking group branding. Obviously what really matters is the people in our group and the content of our communications but presentation is very important as well. We felt that our name was neither memorable nor impactful. We wanted something pithier, which embodied our sense of place and purpose. The name CamPain was developed by group member Mark and then tested with the wider group, receiving their approbation. The full name of the group remains Camden Patient-led Pain Support Group, but we generally refer to ourselves by this shortened title and it’s now our default name within our network. Alongside this, it was time to develop a proper logo. Rachel again came to the rescue with an excellent design which looks good and conveyed our caring, supportive ethos.
CamPain Ready
Equipped with this new, improved name and image, with a regular newsletter and burgeoning website, the group is in the best condition it’s ever been in terms of media and communication. More importantly, a real spirit of camaraderie and mutual support has developed within our network which is incredibly moving and inspiring. What started as connection has become a genuine community, which cares for and supports each other. There is a consensus that it’s really important to keep that sense and to build slowly, gradually incorporating new people to the group who have the relevant experience, approach and want to join. To that end we are now on the social prescribing list for Camden with Voluntary Action Camden and our details are shared with those completing pain management programmes at local pain services. We are also keen to share our experiences with other pain patients looking to build their own networks, as well as healthcare professionals wanting to encourage or facilitate peer support. So we are in good shape ourselves and looking to help others where we can.
December 2021
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