Start your own Support Group
About Support Groups
Many patients and carers would like help dealing with the effects of a bladder cancer diagnosis and treatment. Fight Bladder Cancer offers a range of services, including helping to assist with in-person local groups throughout the UK. They provide a space for patients to access help and overcome psychological trauma accompanying a cancer diagnosis.
Recently, the pandemic has prevented in-person local support meetings. Now, Fight Bladder Cancer hopes to facilitate reintroducing the provision of bladder cancer support groups across the UK.
If you want to set up a local support group, Fight Bladder Cancer will help you make it happen.
The “professionally led” Support Group
This is when a urology team or urology Cancer Nurse Specialist (CNS) in a hospital takes the lead and works with Fight Bladder Cancer to establish a support group. The group usually consists of a group of bladder cancer patients linked with their hospital(s).
The CNS who helps to facilitate the groups should run it initially in a non-directive way and always be available for advice and answer any questions at group meetings. These are active groups where the patients support each other, share experiences, plan guest speakers, and do various fundraising activities.
Monthly meetings are successful, and they should have guest speakers to provide a focus on information whenever possible. The venue used can often be provided free of charge by the hospital. We can provide you with awareness materials and advertising for your event.
As well as talks and discussions on treatments, side effects and quality of life issues, we have found that groups also like to discuss diet and nutritional advice, financial advice, bladder cancer research, awareness campaigns and fundraising events.
The “patient- and carer-led” Support Group
This is when patients and carers themselves set up and run a self-help support group. Many Fight Bladder Cancer groups have started after people who have made contact through our Confidential Forum realised that they live near other members and decided to get together regularly to support each other.
Support groups are fundamentally about human warmth, friendship and companionship with people who have had (or are having) the same experience as you. This helps to create a strong bond between people affected by bladder cancer and helps to ensure that these groups are sustainable.
The big difference with these patient-led groups is that they start small and grow as word gets around of their existence. If you set one up, don’t worry if only a few people turn up at the beginning- they will grow!
Many of these groups meet in a local pub or café for a chat. As the groups grow, you can start having more formal meetings. If (and when) you move to a more formal venue, this can often be provided free of charge by the local hospital, or you could borrow the staff room at a local supermarket. Many national supermarket chains offer this facility to local community groups.
“We chose a building which was on hospital grounds but not where patients were having their consultations. It was a little removed from the clinical environment but was at a location that members were familiar with, with good transport links.”
“Initial set-up needn’t be either just nurse-led, or patient-led but can work well with input from both. As a nurse, I felt very lucky to have insights from patients into what other patients and their families would like from a group and what would help the most.”
“We held several meetings with speakers and Question & Answer sessions as well as some more informal sessions where everyone just had chance to chat and get to know each other better. A mix of session ‘types’ can be great in addressing needs for information but also for companionship and sharing”
At Fight Bladder Cancer, we are always here to give advice and support to help your group find its feet and move it forward for you and your fellow patients and carers. Contact email@example.com to get the ball rolling with your very own Support Group.
How to set up a Support Group
You can find more information about Support Groups on our download here:
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We’ve tried to make the information on this site as accurate as possible. Whilst we have support from medical professionals to review the general medical content of this site, please remember that only your medical team can give you specific advice about your symptoms or illness. Fight Bladder Cancer is a registered Charitable Incorporated Organisation in Scotland (SC051881), England and Wales (1198773), and was initially established as an unincorporated charity in England and Wales (1157763). It also operates in Northern Ireland.