Why did you decide to set up a patient focus group for the bladder, bowel and pelvic health team?
Myra
I read something about it in an NHS directive, and thought that it could be a way of helping management to see how patients feel about our service and the conditions we manage. I often feel that I'm saying what is best for our patients and potential patients, but sometimes it's not fully heard if it doesn't align with the KPIs or where managers want us to go. So it's an extra way of getting that voice in and having some strength in our voice. However knowledgeable we might be as clinicians, and even if we're patients ourselves, you soon forget what it's like to be a patient. So having the voices of the people that we're representing helps to keep us focused on what really matters to the people we care about.
Why did you decide to join the bladder, bowel and pelvic health team patient focus group?
Lewis
Myra invited me along to one of the training days and the four of us met up together. I thought it was a brilliant way of getting support. The problems we have can be a bit embarrassing and private and you don't really want to discuss them with your family. But meeting people who were in a similar boat to yourself was really helpful and affirming. We could discuss our own experiences and offer ideas and support. When you realise that someone else has a similar problem to you, then you can offer backup. It made me appreciate that my condition isn’t as bad as other people’s, and it also helps Myra and her team to feed back to management.
James
I joined because I'd previously had a poor experience with the NHS, and Myra is somebody who has integrity and genuinely wants to improve patient welfare – something I really resonate with. I felt that if I could share my experience and that might help other people avoid going through what I went through, then I was all for it. I want to ensure that patients are empowered to ask the right questions and feel supported in getting answers.
I'm a fairly unusual case in that I had routine hip surgery (a total hip replacement) that was done very poorly. I didn't know that at the time, and seeking rehabilitation for it resulted in a spinal injury and nerve damage – two issues that don't normally go together. In speaking with some of the physios on Myra's team, I've highlighted that pelvic surgery might cause nerve damage, but most physios don't routinely look for that, understandably. It's been really encouraging to know that some of the physios I've spoken to now actually ask questions about potential nerve damage following standard hip replacements. I joined because I want some good to come out of my experience, and if it can help other patients avoid what I've gone through, I'm all for that.
Margaret
There were two reasons I joined the patient focus group: because Myra and the team work tirelessly to improve the services they offer and to reach out to patients, and because having (in)continence problems is isolating in the extreme. It is such a relief to come out of ‘hiding’ these issues and know that other perfectly ‘normal’ people have these feelings and deal with these issues too.
Have there been any unanticipated outcomes from the group, either positive or negative?
Myra
Absolutely nothing negative. The positive is they all seem to get on really well and it's almost morphed into a support group. I think there's a huge value in that, as this is such a challenging issue to discuss. It can be mortifying to have some of the symptoms that people have got in our service. Clinicians talk about it all the time and have no shame, but when you're a patient experiencing it and when you're not used to discussing it all the time, that's very different. I would love to get some support networks involved.
What do you see as the benefits of having a patient focus group?
James
I think there are benefits both for patients and for healthcare professionals. As a patient, it can be very isolating when you're dealing with these issues on your own. Being in a group of people who are going through similar challenges and who want the best for themselves and other patients is very encouraging. It's such a difficult topic to talk about, so having a safe space where you can speak with like-minded people is incredibly helpful.
For me personally, after my NHS experience with a surgeon, it really took the shine off the NHS. Unfortunately, bad experiences can do significant reputational damage. However, Myra has given me the opportunity to meet physios and other healthcare professionals, and it's reminded me of the good people in the NHS – the quality professionals who genuinely care about patients rather than just focusing on reducing waiting lists and hitting targets. That's been very encouraging and has helped me see the positive side of the NHS again.
In terms of benefits for practitioners, by sharing my experience, they may be able to take it on board and perhaps change the way they look at and treat patients. That possibility makes the whole thing worthwhile.
Lewis
I would echo everything that James has just said. My experience with the NHS has been completely different to James's – I regard myself as very lucky. I was diagnosed with prostate cancer at exactly the right time, had excellent care throughout, an amazing team looked after me, and then having Myra as a backup to deal with the follow-on symptoms. The support that I get from the group and from Myra is superb. It is great that we can feed back to the professionals, because my experience is that the people that deliver the service are brilliant. My feeling is that the management, with the focus on costs, waiting lists and other targets, seems to lose sight of what its staff are delivering and what the point of the NHS is. It amazes me that people can continue to deliver such a great service to the patient in a demoralising environment. I think the benefits of the focus group and the way it's become a support group have been excellent both for us and for the wider world going forward.
Margaret
Not only do I feel the benefit of empathy with other members of the focus group, but it is heartening to know that our feedback is listened to by Myra and the team and that this will help other patients to come forward and feel less isolated.
What would you say to other patients who've been invited to join a patient focus group?
Lewis
Go for it! You get to see different perspectives from people with similar issues to yours, which can be really helpful.
Margaret
You meet a diverse group of interesting people and you feel safe to share problems, tips, and if inclined, thoughts and feelings about dealing with bladder, bowel and pelvic health. If any medical team you are dealing with offers you the opportunity to join a focus group you can rest assured that you are under the care of a great team with empathy and a commitment to improve quality of life, whatever your particular issues are. If you feel uncomfortable to begin with, very soon you will feel very confident and able to share.
James
I initially joined because I wanted my experience to help other people. What I've also found is that it's been very rewarding for me personally. If it resonates with you and it's something you feel drawn towards doing, then I would absolutely encourage you not to be afraid to join.
The important thing to know is that if it doesn't work out, there's no pressure. There's been no obligation with this group, which I've really appreciated. You can interact as much or as little as you feel comfortable with. If the idea appeals to you at all, I'd say give it a try – you might be surprised at how beneficial it is, both for others and for yourself.
Final thoughts
This article highlights the importance of collaborating with patients, and the additional benefits this can bring to the clinicians, service and most importantly the patients. This is why the Me+ patient programme was developed with users to ensure it met their needs and supported them in their management of their continence issues. To find out more, go to
https://www.convatec.com/en-gb/continence-care/meplus-support/ 
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