News & Updates
What's happening with the group and other events relevant to people who live with pain
June 26, 2024
Social Get-together at the Garden Gate
We had a really enjoyable in-person get-together at the Garden Gate pub with a very good turnout from the group. As we are largely online these days, this was just a nice opportunity to get together and socialise with each other.
Appropriately enough we were in the garden, which is a friendly, hospitable space without too much noise. We also chose to be outside as several members of the group were concerned about being indoors currently.
Everybody had a good time and we resolved to do this again before the end of the summer.
(We had a few other people attending, who left before we took the photo)
16 April, 2024
Farewell to our
Good Friend, Simon
As many of you will already know, our good friend and long-term group member,
Simon Horvat-Marcovic, sadly passed recently after a brief illness.
Simon was a great character, filled with energy and enthusiasm, always putting himself out to help other people despite being affected by chronic pain and several other serious health conditions. He was ever present at our in-person meetings, always making the effort to attend, both to support the group and to get the benefits of peer-to-peer support himself.
He will be greatly missed.
Three members of our group joined other friends of Simon for his funeral at the East Finchley Crematorium for a sad but respectful and also joyous celebration of Simon's life and achievements. Afterwards we repaired to a local pub for a wake which was also very moving as it showed how much (and how many) people really valued Simon as a friend and colleague.
Group organiser Rachel Bonnington created an online remembrance page for Simon.
This also includes a fundraiser for the Terence Higgins Trust.
Over £400 has been raised for this fantastic cause in memory of Simon.
What a moving and wonderful tribute!
February 23, 2023
Back at the KTHC!
Thursday 23rd February saw our group returning to the Kentish Town Health Centre (a.k.a. James Wigg Group Practice) for the first time since before the pandemic. Then we were attending as part of the Pain Space project, now sadly defunct. Three years later, the world has changed a lot but the need for proper support, including peer support, for people living with long-term pain hasn't gone away.So it was a great pleasure to kick off our return to this venue with a very pleasant evening meeting. It was a small, but extremely select (:-)) gathering, with Rachel, Simon and Mark in attendance. As always, there was plenty to talk about, some about living well with pain but also just general catching up. It's always useful to share time with people who are going through the same thing as you, helps get everything into perspective. Also a great opportunity to share useful information and ideas.The James Wigg provides tea, coffee, biscuits et cetera so we had plenty of fuel to keep is going. We also brought along some snacks to sustain us. The 2 hours scheduled flew by and we departed in good spirits.This was a bit of a test event, trying out a formal group evening meeting for the first time. We also wanted to see if this venue would work for us as a group. It was a success on both fronts so hopefully we will be holding more such evening meetings. However we are carrying on with our daytime meetings at the Old Diorama Arts Centre for the time being. It may be that having the option of evening and daytime works for the group or perhaps we will end up focusing on one of the other, depending on what people prefer.
October 28 (deadline)
Paid opportunity to give feedback on access to NHS services
Paid opportunity to get give feedback on NHS MSK self-management systems.
Open until 28 October (Payment = £30)
If you would like to help improve NHS services for people with long-term MSK (musculoskeletal) conditions then a group called Thrive by Design are working with NHS England to understand different people's experiences of accessing support. This will be focused on 'self-management pathways'.
In plain language, 'self-management pathways' means when patients ask for an appointment when they need one,based on their symptoms and individual circumstances.
"Tim and Ali from Thrive by Design are interested in talking to people about their experiences of re-accessing support for Musculoskeletal (MSK) conditions through self-management pathways. We want to speak to lots of different people, to understand what their journey looks and feels
like on a self-management pathway. This could include what has worked well, and what has not. We can arrange to speak to you at a time and in a way that is accessible and convenient for you. This could be on the phone; we could send through a set of questions via an email or text, have a one-to-one telephone conversation, arrange a video chat or can come along to a group
you currently attend."
Dates
This project is taking place between 19th September and 28th October, 2022.
"Thrive by Design is a co-design, digital inclusion, and innovation team (hosted by the NHS) who specialise in Inclusive Digital Transformation in health and care settings. "
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October 4
Diet and Health talk with Dr Lucy Ward
We were delighted to be able to host a session with Royal Free Hospital Pain Consultant, Dr Lucy Ward, about diet and health with particular reference to pain. A number of the group had previously attended a Royal Free Pain Support Group webinar delivered by Lucy on this subject. They had reported back that it had been extremely useful and interesting but had said it would have been even better if they could have asked questions. The organisers decided it would be beneficial for the whole group to have a chance to hear what Lucy has to say about diet, ideally with the opportunity to ask questions. So we contacted her and she very generously agreed to provide us with a presentation just for CamPain – with the requested Q&A included.
The talk was very well attended, with 13 people joining as attendees. This included 4 from the Footstep Festival lived experience members, who came as our guests. Lucy gave a fascinating presentation with slides, exploring current research on diet and health, with particular emphasis on inflammation. Although a clear correlation between diet and chronic pain does not seem to exist currently, the message was that there is evidence that a good diet can help reduce inflammation and improve mental health. The thrust of the presentation was that improving one’s diet could only have a beneficial impact on general health including pain. In practice this meant eating more fresh, plant-based foods and avoiding processed and sugary foods. For a more detailed understanding of what was discussed, please do see the attached slides and handout.
The group very much appreciated the opportunity to ask questions and we had a good half an hour of these at the end (with Lucy generously extending the end time well past the allotted hour). Several of the group commented afterwards about how much they had enjoyed it: “that was fantastic, Lucy is such a gem” “that was brilliant-better than the ‘official’ webinars!” “That was interesting” “it was really interesting… It has left me very thoughtful about making changes in my diet”
Hopefully we will be able to organise more such co-produced sessions with healthcare professionals in future – always with Q&A!
September 21
Face-to-face
get-together at the Old Diorama
Arts Centre
We had a very pleasant informal get-together of some of the group at the Old Diorama. Everything went very smoothly from an organising point of view with no hitches. We have been allocated a very nice studio on the 1st floor (readily accessible by lift) as our regular room. It’s a good size for our group, not too large so we don’t feel lost in the space. It also has a variety of seating, including a sofa (plus a chaise longue!) so hopefully everyone can find something comfortable to sit on.
Using the kitchen facility, we were able to set up with hot water plus our beverages. Various members of the group brought some snacks and dips so that there was an excellent spread of refreshments for those attending.
There were five of us who made it in on this occasion. This was actually a nice number as it meant we could have a good discussion with everybody getting assay. In fact this meeting was a particularly beneficial one. Very sadly, several of those attending were having a difficult time with flareups and pain generally. This made it all the more impressive that they managed to join us. But it did mean that there was a good opportunity for them to share what they are currently going through and get a sympathetic hearing from the rest of the group. We all need to vent and nobody is more prepared to listen than peers with pain.
Moving beyond that sharing of current experiences, we had a very fruitful discussion about various practical aspects of pain management. I thought this was one of the best discussions we have had in terms of sharing ideas and experiences and deepening our own knowledge of how to live with pain through that discussion. This was all the more remarkable given how much people were suffering in the room. It’s remarkable how much insight as well as courage and perseverance there is in this group!
August 17
CamPain August face-to-face get-together at the
Old Diorama
We had a really lovely, joyous meeting on August 17 at the Old Diorama Arts Centre. Four of the regulars at these gatherings were able to attend in person – Simon, Helen, Pauline and Mark (me), with Steve joining us remotely for part of it. As always, it’s wonderful to meet up with fellow members of the group who are now friends. We can catch up about what we’ve been doing and just generally get the satisfaction of spending time with people who “get” us and what we have to live with.
But in addition, this time, we were joined by a very nice new person, Rui, who came with his social prescribing adviser, Sarai. She was also very nice and had found out about our group, then arranged with us for him to attend, as well as coming along to support him.
The dynamic within this group worked out extremely well, helped by the light buffet which we shared. As mentioned, the regulars were able to do the normal socialising and supporting of each other but it was really nice to have someone new to learn about and share experiences with.
When Stephen joined us virtually for part of the session, this added a new dimension and type of contribution which was also very valuable and insightful. There was consensus that the session went very well and that Rui is an excellent addition to the group and hopefully will join us regularly in future. It was also very positive to hear Sarai’s perspective and to establish a connection with her, which could be beneficial for all in the future.
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New start at The Old Diorama Centre
April 2022
A fresh start at a new venue for our face-to-face meetings
We are delighted to announce that we have a new meeting place for our face-to-face get-togethers, a studio space provided by the wonderful Old Diorama Arts Centre, in Drummond Street near Euston.
Our previous venue since 2018, the Hpod, provided by the amazing West Euston Project, is no longer available after they unfortunately had to shut down.
It's extremely exciting as the Old Diorama is a vibrant, energetic arts centre with lots of amazing creativity taking place. We are so looking forward to meeting there and enjoying a great partnership with them.
CamPain on Footsteps Festival 2021
November 23, 2022
Our presentation about this wonderful group and the benefits of peer support, was a great success. Thanks to all those who helped plan, present and shared comments and images for the event. Great team effort!
Happy three-year anniversary to us!
October 17, 2022
This October was the third anniversary of our support group's first-ever meeting, at the H-pod, on 17 October 2018. It’s great to think that we are still going after three years, spanning great changes in the way pain treatment is delivered in Camden (switching from Drummond Street to the Royal Free), the end of Pain Space and of course the lockdown.
