Advice and Tips

Living with bladder cancer can be challenging - and some patients (and their partners or carer) can find it helpful to find the support of others with bladder cancer through attending a group.

Are you interested in setting up a bladder cancer patient support group (PSG) but not sure where to start?  Setting up a group needn't be difficult and ABC UK are keen to help both patients and nurses to start a group in their area.

If you're interested in starting a new group, do get in touch, and one of our team will get back to you.  We can give direct help, with detailed advice and support, and give you face to face advice.  We can also provide on-going support and guidance, and give one to one assistance to potential group leaders.

If you already have a group, and would like us to provide a speaker for a group session - we'd be very happy to come along and talk about the work of ABC UK, our plans and how we can work together.  It's important to us to hear from bladder cancer patients about what we can do to help them, and we're keen to involve patient groups in our work.

If you would like to link up with other groups, let us know and we can also help with that, and we're happy to help publicise your group meetings and events.

We're here to help every step of the way to make it a positive experience for you and your patients...  We can also offer small grants to help with start-up costs or one-off costs.

Contact us if you would like more details about our work with patient support groups or if we can help. 

  
Read more from Phil, a patient, and Jenny Akins, an Advanced Nurse Practitioner - who have both set up their own support groups.

Phil, a patient who both leads and attends the support group he set up following his own diagnosis, says...

 "All the patients at the group have said to me (outside the meetings) how valuable they find being able to ask any questions about their own treatment - the rest of the group also benefit from the answers and explanations give, it's very much a learning process for them all. We're lucky to have our local CNS and urologist support the group as well, which really encourages people to come along."

Jenny Akins, Advanced Nurse Practitioner at Wolverhampton NHS Trust, set up her Support Group back in 2011.

In Jenny's own words: "Accessing a support group is a valuable resource to patients and should be available to every patient with a diagnosis of bladder cancer. 
This should be regarded as an essential part of the CNS job role and incorporated into their job plan.   
When asked what her 3 top tips would be for getting a support group up and running, she said...." engage, promote and involve!" 


Some things to think about if you would like to start a support group
 
The following are some of the key areas you might want to think about if you are considering setting up a bladder cancer patient support group.  Don't forget, we can help you with all of these points and provide lots more guidance too.
  • Where will the group be based.
  • What would be a suitable venue - that would be convenient for patients and group leaders.
  • Who can help you.
  • How often should you meet.
  • Who will run the group and do the admin.
  • On-going running of the group.
  • What are the aims of the group.
  • What form will the meetings take. 
 
 
  

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