Many months ago, Colostomy UK recognised that there was a need to support people living with a stoma within their own communities. We realised that we could help connect the dots between stoma healthcare services and ostomates who could benefit from this support, yet might not know where to turn. We also realised that we could use our years of experience, connections and knowledge to empower people to start up their own Stoma Support Groups in their local areas. This is particularly important given that our research shows that peer support is one of the most valued and effective ways of managing the practical and emotional challenges which can arise from living with a stoma
In fact, the more we discussed it, the more it seemed that the possibilities for what we could do in the community just grew and grew, until finally, we realised that this support would require an entirely new, dedicated role within the organisation.
Fast forward to today, and the recently created role of Community Engagement Lead is fully up and running, and in the safe hands of our newly appointed and fantastic colleague, Shauna Hemphill. In this short article, we talk through what Shauna’s role involves, and what she’s been up to in her first few months. Examples are provided throughout as to which kind of community groups can be set up, as well as how best Colostomy UK can support them.
How the community engagement lead helps develop local support groups
In a nutshell, Shauna’s role is to empower, support and connect stoma communities across the UK. This requires Shauna to regularly travel the length and breadth of the country, offering advice and guidance to existing support groups, as well as meeting individuals who are keen to start their own support groups, but who may be unsure how to go about it.
Colostomy UK is perfectly placed to help such individuals. We can use our huge database of people living with a stoma to link interested people and parties together in their local areas. We can even connect people who want to focus on specific interests or needs. For instance, if a young person wants to start a group just for people aged under 25 years old, or if someone else wants to start a group just for people with urostomies.
Shauna has already supported the set-up of one new group on Canvey Island, Essex, but is also having conversations with people from Christchurch to North Wales as she continues her mission to build a network of support groups all over the country.
Top tips and your guide to setting up a support group
After many conversations across the country, Shauna decided to develop our brand-new Top Tips Guide to Setting up a Support Group. This pamphlet helps people to set up their own support groups and to understand what is involved in running one once it’s established. It also summarises what we’ve learned over many years and incorporates the advice and experiences of leaders of existing and successful support groups. To get a copy of the Top Tips Guide, or discuss any other aspect of setting up a support group, you can contact Shauna directly. Her contact details can be found at the end of this article.
How the Community Engagement Lead is working with stoma care services
Shauna is also developing new and existing relationships with stoma care departments and other organisations, to better understand how these services engage in their local communities. This is important, as we know that many ostomates are simply not aware of the variety of services available to them in their local areas. Shauna is keen to help bridge the gaps in awareness and information that often exist in different parts of the country.
Shauna has been visiting stoma care nurses in hospitals to help build relationships with these vital teams, as there are lots of opportunities to grow these partnerships. For instance, we can collaborate on local issues such as increasing the number of stoma-friendly accessible toilets in stoma care departments. We can also keep nurses up-to-date on our latest campaigns, such as our current campaign to break social stigma, offering ways for them to get involved themselves.
Nurses also play a vital role in signposting ostomates to the non-medical, practical advice and emotional support that we offer, but which they themselves may not have the remit to provide. For example, the support we offer through our 24/7 helpline, or promoting our free Active Ostomate’s classes.
We can also stock stoma clinics with a wide variety of booklets and brochures aimed at helping people living with a stoma find the information they need, when they need it most.
Active ostomates
Since joining the Colostomy UK team, Shauna has taken over the management of our flagship project, Active Ostomates. These free online group classes help people living with a stoma to get active after surgery. They include sessions such as yoga, chair yoga, mindfulness, meditation and pilates, and there is an ambition to increase the variety of classes available beyond the current capacity.
Classes were initially forced online due to the COVID-19 pandemic, but having listened to feedback from the stoma community, Shauna is keen to see the return of in-person classes again, in line with what ostomates have requested.
Until then, however, our online courses will continue at a pace. The next Active Ostomates courses start on the 9 September 2024 and include eight, weekly online group sessions. A further 8-week course will then begin in early 2025.
Workshops and events
The Community Engagement Lead is now the charity’s official point of contact for our workshop entitled: caring for a person with a stoma. This workshop is run by a trained stoma nurse, with support from Shauna, and provides other organisations and charities advice on how to care for someone with a stoma.
Shauna is also attending as many workshops and events as her busy schedule will allow. This is helping her to better understand where the gaps and opportunities for partnerships lie between the stoma community and the voluntary sector. One such event is the annual conference of the Association of Stoma Care Nurses (ASCN), which this year is held in Glasgow in September.
That being said, not all events need to be so large in scale. If you are planning your own event, let Shauna know, as she or a member of our team might be able to attend, provide literature, deliver a presentation, or even run an active ostomates session!
What the future holds
Given that the country is big, and Shauna is but one person, a primary objective of this outreach programme is to create a network of volunteers across the different regions of the UK who can assist the Community Engagement Lead in supporting people within their own communities.
Ultimately, Shauna hopes that each region across Britain will have its own self-sustaining and vibrant stoma community, with Colostomy UK available to offer advice and support whenever it may be needed.
How you can get involved
Whether you are someone living with a stoma, a stoma care nurse, a healthcare professional or an organisation wanting to become more stoma-aware, Shauna would love to hear from you!
Shauna can share information and advice on all the previously mentioned topics, including setting up a support group or an event, stoma care workshops, or discussing partnerships with stoma care professionals.