Participation

We had got ourselves a bit of a reputation, but this chap clearly wasn't aware of it. As usual the administrator, Sarah, had arranged a senior manager to give us a talk, and David had turned up with his laptop and powerpoint and relaxed into his presentation. We were a polite lot, we let David work his way through the first ten minutes of the professional-looking slides, and the script, clearly prepared by a team of people.

Then it happened. Jonathon said "But..."

A wry smile drew across the faces of everyone there, we all knew that someone would interrupt the manager from the distant big office, and we knew that the most likely person was Jonathon. Actually, if I am honest, we knew it would be Jonathon because it always was him. He was polite, concise and asked pertinent questions that would make a manager stop and think, so he was the ideal person to ask the first question.

"But what you say on that slide is not 100 percent correct. I use that service and I know that two times out of ten it will fail."

David stopped. The look on his face was puzzlement: someone had interrupted his talk. In years of being a senior manager, no one ever interrupted his talks, he didn't quite know how to react.

There were thirty of us in the room and he knew that everyone there was regarded as being a 'critical friend', people who wanted the service improved. And that was his intention too. He was used to giving presentations to employees, who, careful of their future career, would never interrupt someone as senior as him. None of us were employees, but we weren't 'the public' either since we had been invited to these regular meetings as people who were part of the community and thus closer to the service. The look on his face changed as he made up his mind that engaging with Jonathon was the best course of action.

"Going forward we will ensure that the service will succeed in ten times out of ten..."

A valiant try from someone not used to engaging with the public, but it was rather poor and Jonathon would have nothing to do with it.

"But", continued Jonathon, "I can assure you that it will not improve if you do what you say in the slides, and I can explain why..."

The room was quiet, waiting for the response.

It came, and this time David chose the right thing to do, he took out a notepad from his jacket pocket and asked Jonathon to explain why the service failed in a fifth of cases. After the quick explanation, David realised that Jonathon knew what he was talking about, and - concerning for him - the failures were real and no one had ever told him about them. David wrote down the details, telling Jonathon that he would get 'someone on my team' to look at the issue once he had returned back to his office.

The management spell had been broken. David was talking with us, not at us. To his credit, David recognised that as a group we had an experience of the service that no one on his team had, and he was listening to us because he knew that he would learn from us.

As soon as Jonathon had finished Peter started talking. He too had an issue with the service, and showed that he was knowledgeable and knew what needed to change to fix the issue. As with Jonathon's issue, David had not come across Peter's issue, and he scribbled more in his notebook.

It was clear now that the slides had been abandoned, and the rest of the hour long presentation was a two way conversation between David and the group. There were a long list of questions. Sometimes David would answer them, but mostly the direction of travel of information was from the group via David and his notebook to his 'team'.

After the presentation was finished we paused for a break to have coffee. I went to talk to David.

"What do you think our group?"

It was clear to me that he was looking a bit tired, but relaxed.

"It was tough. I have never had a session like that before. Do you do that to everyone?"

I smiled, "Yes, everyone, it's why we are here".

He laughed. "You are very difficult to please. I don't usually get this level of detail from my team, I didn't know there were these issues with our service. It was a great session, I really enjoyed it. I will definitely come back and next time I will be able to tell you that those problems have been fixed."

This all happened, though the names have been changed (well, not Jonathon's, everyone who knows him will recognise him from this story).

Now you are thinking about which of the patient participation groups that I attend I am describing, and when this happened.

It is not a patient participation group, it is a Microsoft user group and it happened a decade ago. For a decade from 1996 to 2006 I was involved with Microsoft user groups, mostly helping software developers use Microsoft's tools and libraries. I was not paid to do this, it was peer-to-peer support. I would answer people's questions on newsgroups and forums, and I would ask my own. Since I tended to answer more questions than I asked, and the quality of my help was good, Microsoft decided that I was a "community leader" and invited me to attend these user groups every quarter at Microsoft's regional headquarters in Reading. The manager I mentioned above was from Redmond, and yes he did return and he had ensured that the issues were fixed. In return we gave him a whole pile of additional issues to fix.

My involvement with Microsoft meant that I was asked to beta test most of their products, but the involvement went further. I was also asked to do alpha testing (very early version of products while they were being developed, and often before it was even publicly known that Microsoft was working on the product). However, the most useful part of this relationship was having access to the product team. On regular occasions I was invited (and my travel and hotel expenses paid) to visit the product team, usually in Redmond, to review the design of the next version of the product. I got to see the product on the "drawing board" years before the product would appear. Of course there were Non-disclosure Agreements (NDAs), but even so, I was not an employee, I was totally independent of Microsoft and I could say what I wanted. And I did. I was chosen to be there because I was a user, I knew what the product should do, and because of my involvement with "the community", I knew what other users of the product wanted.

This is how I expected NHS Patient Participation to work. Sadly, it is a million miles away. Most of NHS Patient Participation is a tick box: the CCG invite patients to a meeting, tell them what they are going to do and then tick the box marked "patient involvement". We are involved because, right at the end of changing a service, we have been told that the service is to be changed. This is not how it should be. Patients should be, but are not invited to be part of the commissioners' meetings when designing a service.

Patients are held at arm's length by commissioners, it is as if commissioners do not trust patients to know about the services they use. In the few meetings I am invited to I feel like I am a "guest": everyone there is polite to me, but I rarely feel that the meeting has any influence over the service involved, or that any of my concerns are noted. I find that when a patient raises issues about a service, the first reaction from commissioners is to be defensive and to blame someone else, usually the local hospital (now that CCGs are GP-led, there can never be an issue with primary care). I rarely find a commissioner reply to me that the service is poor and would be changed in response to my comments.

And then there are areas of the NHS where patient involvement appears to be forbidden. You know who I am talking about, NHS England and Local Authorities.

Primary care, GPs, dentists, opticians, pharmacies, very local patient services, are commissioned at a large population level in aloof and distant offices with no patient involvement by NHS England Area Teams. Does the Area Team know whether there are enough GPs in a town? They certainly don't bother to ask the patients who use the existing GP practices. Most GP practices have a patient participation group (PPG) where patients have joined specifically to improve the practice's services, but NHS England never consult these groups. That they choose not to consult GP PPGs shows that NHS England have a contempt for patient participation.

Now (in a bizarrely ill thought out decision) "public health" has been transferred to local councils. To be clear, I am happy for "healthy living" services - smoking cessation, health eating and campaigns to lose weight - to be transferred to local authorities. But for odd historical reasons, some healthcare services were classified as "public health" and these have been transferred out of the NHS, where they belong, to local authorities. For example sexual health services, school nurses and health visitors. Local authorities don't do patient participation, so by re-classifying a former NHS service as "public health" politicians have removed a legal requirement to involve the public in their commissioning.

The NHS has a lot to learn about patient involvement. It could learn a lot from how user groups provide peer-to-peer support and how they feedback to the companies providing the products they use. The current version of patient participation does not work. I have never been told that my comments about a service will result in a change in an existing service, and I have never been invited to be part of the team designing a service that I will use as a patient. Indeed, and more concerning, I have specifically been told that I cannot attend such meetings. I know that it will make some people wince, but the NHS could learn a lot from Microsoft.