Working with NHS and VCS Partners

The Voluntary, Community and Social Enterprise sector (VCSE)

The Old Diorama

A wonderful, vibrant arts and community project centre located in a lively office and residential area close to Euston.

​

• With the sad demise of our previous meeting space provider, our group was anxious that we would be unable to find a replacement.

• However, having made just a few enquiries we were connected with ODAC and they immediately stepped into assist us, as they had done for some other WEP groups.

• They have been providing us with a free meeting space for our group at their wonderful facility since May 2022.

• Our members are very happy with this arrangement as they find the centre to be a pleasant, well-equipped environment with incredibly friendly, supportive staff.

• We are extremely grateful to the Old Diorama for their support.

West Euston Project

Based near Euston station, this fantastic employment, health and well-being charity, served the community in Camden and Westminster until its closure in March 2022. For 3 1/2 years (with breaks for Covid) they provided us with a free meeting space, invaluable to making our group viable.

• They maintained a full slate of community health activities at their ‘health pod’, known as the Hpod. including tai chi, yoga, community choir and an LGBTQ group. And CamPain.

• When we approached them, we were immediately invited to come and talk to their Director, Sharon Gordon, who was friendly and supportive towards us from the outset.

• They were keen to provide us with a space and when they realised that we had no funding, found a way to make the space available to us for free on a monthly basis.

• Given group was predominantly a face-to-face one until march 2020, having access to a free space was essential to us. We were extremely lucky to have this support as finding a space in London is very difficult.

• As well as finding us space, they were always extremely supportive towards us, allowing us to use the space flexibly and even change dates at short notice when circumstances dictate.

• We could not have established ourselves as a group without their help. We conclude that having such a partner is essential in establishing a face-to-face group, unless you have deep pockets. 

Voluntary Action Camden

• Main charity organising support for voluntary organisations in Camden.

• Provides excellent meetings/webinars on running a voluntary group attended by us.

  • Direction of travel of voluntary sector, general advice for community groups.

  • Technical advice, particularly on IT.

• Available for individual advice face-to-face and by email, utilised by our group.

• In charge of Social Prescribing in Camden. CamPain added to their SP register.

• Very friendly people and good to know that they are there to help when needed.

Other VCS Involvement

CamPain organisers have been invited to speak to VCs events in Camden, e.g. at a Camden carers event in 2019.

NHS

Cristina Serrao, Lived Experience Ambassador, NHS England,

formerly Patient Director, Camden MSK Services

Cristina has been a key ally and supporter of the group since she became aware of us in october 2018. she attended our second meeting in november and joined the group as a member, having chronic pain herself.

• It was quickly identified that we could work in collaboration as she was forming a patient advisory group – Camden MSK PAG

• She regularly attended our meetings.

• Gave us a lot of advice and encouragement,

• Boosted our profile within the borough and beyond within other networks that she was in contact with.

• Got many of the group involved in PPV work locally.

• Promoted/funded our 1st birthday celebration event –18 people came to, including 12 group members and 6 guests (healthcare professionals and people from voluntary sector)

Cristina was also instrumental in one of our most successful projects and collaborations…

Camden MSK Lockdown Group

• During lockdown we were approached  Cristina and her colleague Jonathan Hearsey, Clinical Director of Camden MSK about having an online forum for MSK patients and healthcare professionals in Camden.

• This was very successful and productive, providing a lot of good information and interaction which was mutually beneficial for both patients and carers and healthcare professionals.

• Many of the patients attending were from our group and our group help co-produced these meetings, suggesting speakers and taking over some of the facilitation of sessions.

• The project was recognised as an exemplar of good practice on the NHS Change Challenge project, which identified pandemic innovations which could be adopted and shared throughout the NHS.

• After Lockdown ended we converted this to regular Zoom meetings for our group which are still taking place.

Cristina Serrao had this to say about the role of CamPain in the Camden MSK Lockdown Group:

I'm glad that we had this peer support group to draw upon as we formed the Camden MSK Lockdown Group with them. It is important that we understand their drive to organise themselves in this way, Mark did a lot of work to ensure people stay connected and attended. I supported people who didn’t know how to use Zoom including a 95 year old woman. The group was and still is very diverse and is a great representation of the Camden borough.  My PTSD was triggered in lockdown 1 and I know the support they gave me was invaluable, as being on the shielded list and becoming so deconditioned was something we all understood.  A safe space, with people who understand how variable pain can be and the impact it has on our wider lives.

The clinicians (learnt experience) who joined us found they were also able to show vulnerabilities and have very open honest conversations and we – and it was a collective we – gave support to all that attended.

‘What Matters To You?’– is key to the way the sessions formed and evolved

Cristina's full thoughts about CamPain

Diarmuid Denneny, Lead Physiotherapist, UCLH Pain Management Centre

• Another great ally and supporter of our group is pain physiotherapist Diarmuid Denneny.

• Diarmuid Is Professional Lead Physiotherapist at the Pain Management Centre (PMC), the National Hospital for Neurology and Neurosurgery, University College London Hospitals NHS Foundation Trust. Clinically he is an Advanced Practitioner Physiotherapist.

• He is also Chair of the PPA and is heavily involved with organising the Footsteps Festival 2021.

• Diarmuid has been a supporter of CamPain since attending our now famous October 2019 party.

• Offered himself and members of his team to give talks about pain management at CamPain meetings. Suspended due to pandemic, to be arranged once numbers increase at face-to-face.

• Collaborated with us online, running a refresher PMP just for our group which was very successful, attended by up to 12 people per session.

• Invited members of our group to do coproduction with the pain management centre through their PPI/Pain Café initiative.

Diarmuid's testimony about CamPain

CamPain and Patient Advocacy

​

NICE Guidelines on Chronic Pain Treatment

• The national Institute for Care and Health Excellence (NICE) released its draft guidelines on the treatment of chronic pain in August 2020.

• They invited comments and submissions from stakeholders.

• We were able to register as stakeholders with NICE.

• We held a Zoom meeting explaining the proposals to the group and harvested everyone’s responses and thoughts about it.

• This was collated and then turned into a submission by group member Rachel, which was sent to NICE.

• They responded individually to us on the points we had raised.

• NICE Guidelines. Released April 2021.

Camden Pain Service, Camden MSK Services

• Most of the members of CamPain have come through the PMP provided by the Camden Pain Service, which comes under Camden MSK Services.

• Most of us, including the organisers, met at the Camden Pain Service monthly pain management meetings, Pain Space.

• Members of our group were amongst the most regular attenders at Pain Space meetings.

• Our group has provided feedback to the Camden Pain Service about provision of support for people with persistent pain in Camden.

• CamPain and the Pain Service are keen to cooperate to ensure that there is peer support available for persistent pain sufferers who have undertaken a pain management programme in Camden.

• To this end, the Camden Pain Service is providing details of our group to people who take their programme.

• Pain Space project has ended and the service is now providing monthly webinars on pain management topics instead.