How Was It For Me? My First Focus Group

Standing in the street near a cafe: a giant stone ear with arms and legs. The ear becomes the arms and pulls at itself. The figure is squat and muscular. .

Today I went to a focus group at my hospital.

Listening to patient stories and learning from them is a hot topic in the National Health Service, and rightly so. A service user will always have some insight that the provider will lack, because they – and not the provider! – are truly inside the service. Think about that. The true insiders are the patients.

If you read this blog post by Katherine Rake you’ll get a feeling for how important this listening is, but also for how it still doesn’t happen everywhere.

But the event I was at today gets 10/10 in my book. The aim was to capture patient experiences and stories, good or bad, and not just what happened, but how patients felt, and more than that – how they described it, and the patient’s own voice, and richness of language and expression.

I was bowled over by the clear sense of commitment shown. From the moment we entered the room to the moment we left the atmosphere was one of warm welcome and sincere engagement. Most of the conference organizers I have met could have learned something just from the way were greeted today.

We patients numbered about 20 and there were a slightly larger number of medical staff present. Each patient was assigned a buddy member of staff to be their listener, and stayed with them for the whole workshop.

And it was a workshop! We all worked hard for two hours. There were lots of post-its, some green (for good things), some pink (for, er, not good). We worked with our buddy, half an hour, racking up as many post-it notes of each colour as possible. Then came some triage! We are asked to star two of each colour as priority.

Now we regroup, from twos to a dozen or more, patients and staff. Start with green. Who has a star?! Someone says “We do!”, and what it is. A facilitator (I didn’t mention them yet did I? Later.) pins it on a board. And now here’s a cute idea. SNAP! If someone else in the group has the same star they shout “Snap” and their post-it is stuck next to the first. And now the second facilitator (I didn’t mention the second facilitator yet did I?) is meanwhile board marker in hand naming a theme. Because that’s what we are trying to do: draw out themes.

Round and round we go and the themes multiply and grow. Just when pretty well all our post-it notes have been pinned up we get another task. What three themes would we choose as promises that would most improve the patient experience? We have two minutes to distill things down. Miraculously we mange it quite easily.

And now as you will have guessed all 40 strong of us unite. What are our promises? I don’t know whether it’s surprising or not to you, but it is to me. The level of agreement is exceptionally high!

The outcomes from the workshop are going to be written up as a report which all the participants will receive and which I presume will be made public. I’m not going to leak anything! But when you read the report in due course, the findings won’t surprise you. They aren’t rocket science. We all knew them in our hearts. But they had to be said out loud so we can pin them on our sleeves.

For the cynic: why should this event change anything? Isn’t is really just a token? Well that’s not my belief. Immense care and thought went into the workshop and there were very senior staff present. That’s normally taken as a sort of litmus paper to test whether management have genuine commitment.

Footnotes: the 40 participants were very dynamic and creative and produced a flood of insights. And our buddies did a great job of noting them on the post-its. And the group facilitators did a great job of pulling together the themes.

And the whole event had a facilitator that ran it so well that I shall pinch some of his ideas (he knows, I told him and he’s good with this!).

One thought (insight I’d say) our facilitator offered at some point went more or less like this:

“Every person with a particular medical condition is different from every other person with that condition. Everyone has individual needs.”

Hear hear!



Skulptur in Köln, by VollwertBI



About partialinsight

One evening I had a stroke. Half my sight vanished overnight. Adapting made me grasp how amazing the visual system and brain are. It also taught me to understand disability completely differently and I'm grateful for the lesson.
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6 Responses to How Was It For Me? My First Focus Group

  1. dms91 says:

    Brilliant Thank you for your insightful writing!

  2. Thanks you for the kind words! I found the workshop really encouraging and I hope I’ve given an idea of how excited it made me feel.

  3. Stéphanie says:

    I never did a workshop like that, but had a “meet up” group with other M.E. sufferers shortly after I was diagnosed. As your facilitator said, even sharing the same condition, we still have very different needs (especially with a condition like M.E. which has such a wide range of symptoms). But still, to be together, to share, and to see others with the same problems, really helped me. It helped to feel I wasn’t alone in that, and gave me hope to manage better with it. Every occasion (workshop or else) to share and explain how we are affected and how we cope, help the sufferer and the person we’re sharing that with. It’s a very good way to give the medical personnel a good insight of every day problems we have. Because they usually just see the condition in books, and usually can’t see how the person feels and deals with it.
    It must be time consuming to organise these sessions, but I’m sure it is worth it.

  4. hi Stephanie

    This reminds me of many things.

    Longer ago than I want to say, when I first worked for the Open University, I was trained as a counsellor, and learned

    A good counsellor listens more, speaks less.

    I still hold on to this.

  5. Richard Fewtrell says:

    Hi Thank you for such an interesting and informative blog.
    I suffered a large bleed as a result of an AVM in Jan13. Am obviously fortunate to have survived but now have left HH. I was 44. A commercial 747 pilot and ex-military fighter pilot. Of course all that and driving has all gone, To say it has ruined and rules my life is an understatement . However,your insight and comment has been fascinating and helpful. I too am or was until very recently a patient of Dr Alex Leff. Best Wishes.

    • hi Richard

      So sorry to hear of your loss. It’s bad enough not being able to drive but you have lost a major part of your life and it must be devastating.

      Does it affect your reading at all? I was very interested to hear that you have been under the care of Alex Leff, who I know has done a lot of work on rehabilitative therapy for homonymous hemianopia sufferers.

      Best wishes, Rich

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