*All patient names have been changed for confidentiality.
How does the focus group work in practice? What are the logistics of it?
Myra
We have four full training days a year for the whole team – around 20–30 healthcare professionals – and we invite the focus group members to our training day to come and talk through their stories and join us for a ‘coffee and cake’ session. That's been really powerful. There's nothing like hearing someone actually talking it through, particularly for staff who don't see certain conditions often. We get really good feedback from staff having the opportunity to talk to patients in a non-rushed manner so they can understand what patients feel about the service and about the NHS.
I plan to use focus group members to check handouts and our patient information. A group will test out what we've written, what we are missing, what other things would be useful to know. When we undertake any major revisions to the service, I would like to test it out on them. We're currently working on an annual audit for everybody with spinal cord injury, which we’re then going to roll out to those with conditions like neurogenic bladder and bowel (connected with multiple sclerosis, Parkinson's and so on). I will go to this group and say: ‘This is our plan. What does this look like and how would this land with you?’ I'm trying to send a monthly update on what we've been doing so they can be involved in what we've done.
I really want to make the focus group members an integral part of the team so they're really working with us. I don't want it to be a tick-box exercise.
My long-term goal is to have a person to represent every key group of conditions and types of patients we see, so that we will have a group of 10–30 people that's really representative of our whole team's work and that we can tap into. We're also evolving it depending on how people feel – they don't have to get involved at any particular time, or give any explanation for why they are not involved. This isn't an obligation. We've had no issues around that so far – everybody's been very engaged and very involved. I'd like to do more outreach activities in prevention and education, and I'd really like the focus group to be involved with that as well.
Are there any recommendations you would give colleagues who are thinking about setting up a patient focus group for their service?
Myra
Be clear what the objectives are for that service, what they can and can't support. Also be clear that it's not an obligation for patients because their feelings can change at different stages in their journey. They need to be able to just drop in and drop out as they wish. You also need to think through how people want to be contacted – who's happy to be in a group e-mail, and who wants to be contacted separately. Only take on what you can really do – don't overpromise and then underdeliver. I struggle to do that. On the other hand, if you don't start things off and try things out, nothing would ever happen, so somewhere in the middle is the sweet spot.
Choose your people carefully. I've picked people who I know are very good advocates who will be able to speak through their experiences. Interestingly, the majority of our focus group members initially came to us with a complaint. Often complaints are actually about communication. Once you've explained, most of the problem goes away because most people are reasonable human beings and understand that there are waiting lists and we don't have unlimited money. Taking some of the more challenging situations and turning those around can be really good. Choose your people carefully because you want them to work with you, to be constructive, proactive and to change things for the better. And if somebody isn't in a place where they can move past some of the challenges, it's probably not going to work that well.
Is there any advice from a patient’s point of view that you would give to staff who are setting up a group?
James
I'd echo what Myra said about making it clear that there's no pressure on participants. That was incredibly helpful for me personally because this was a new endeavour and I find it difficult to talk about these issues anyway. The thought of being put at the forefront to speak about this was initially quite daunting.
Myra's reassurance that I could say as much or as little as I wanted to, and turn up when I felt comfortable doing so, really empowered me to approach it in a way that worked for me. It took the pressure off and made it much easier to engage. I often feel obligated when I commit to something, so knowing I could participate at my own pace was important. That flexibility is key to getting meaningful participation.
Lewis
I think it's important that the people who join the focus group understand what it's about. It’s not for them to get the best out of it for themselves, but it's for the wider group and to help the team improve.
Final thoughts
We hope that this pair of articles has given you some inspiration as to how you can include patients and their views and needs in your service, and why this might benefit all involved.
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