Red flags on a Monday morning…

Before 11am on a recent Monday morning, I felt in need of another weekend.

I was chairing a group of patients and carers, who meet to review transformation programmes locally.

In preparation for the meeting, I had spoken to the speaker to check timings and they were clear about what they wanted to discuss and how to do that. I was assured all was ok!

The meeting started well, and the first item on the agenda was introduced – prioritizing areas of a specific programme for in depth co-production engagement work. With 40 mins set for the item on the agenda, the first ten minutes quickly disappeared with an introduction on the process that got the programme to where it was that day, and the questions starting flying in… and my internal chimp mind (the italics below) went into overdrive and concepts of mindfulness went out the window.

“what do these [condition specific] pathways look like at the moment?”

Cue detailed response from a pathway lead about clinical pathway

Cue me panicking that the detail of those conversations isn’t what we are here for – we are the overview and help call for the detailed engagement with condition specific groups. The red flags in my mind were starting to flutter!

Another angry voice paraphrased “this is an unfit document, we need proper work done properly and people to actually do something, rather than plan what we’ve been saying for ages”

Cue me to think yes, there is too much planning and not enough implementing in the NHS, but this is the hand we’ve been dealt so lets try and get on with making the most of this, and I’m feeling impatient hearing this again!

“but they are all priorities – we can’t not do any of them!”

Yes, but we can’t… so…

Thinking collaboratively with my brilliant co-lead for the group when it became clear the session wasn’t working with the speakers plan, we wanted to bring the conversation back to its focus and devised a quick (thinking on the spot!) exercise to get the information we needed through. This picked up the need for further questions, so the speaker and other staff members circulated to support pairs.

Phew… I think we are back on track…but still feeling very stressed

Bringing the group back to collect the outcomes of those discussions and draw up the priorities for the in-depth engagement co-design work, I promptly fell off that track in spectacular fashion!

“why isn’t [specific condition] on this list of priorities? Its such a major condition!”

Yes, but not every condition can be on here, and priorities are what they say, and there are other programmes looking at that condition…

“why aren’t we looking more systematically, with stroke and cardio combined?”

Of course, in an ideal world, but this is anything but, and its about the systems as they are, and the detail means that these are different pathways because this is a very specialist acute pathways

“this is really tokenistic consultation”

Oh S**T!

For someone who has complained about this being done by others, being told this is something that stopped me in my tracks

RED FLAG

I was aware of all these red flags, but also felt like I was seeing red! I felt cross that the discussion among members had deteriorated so much, that the speaker hadn’t held the topic and that the conversation was rapidly veering away from our usual constructive style. On reflection, these were all symptoms of ‘us’ not getting it right. Easy to blame them, but actually it was a prompt to look at what we were doing. Credit to my professional co-lead for driving this.

I paused the conversation as Chair, and wanted to share my frustrations with the situation and acknowledge that their frustrations were shared. For me, this was an opportunity to share the pressure I felt to give the speaker the tangible outputs they needed, as I’d been pushing for engagement and if we didn’t get this, I felt that we would miss the boat on co-production, as programmes would have already started – crucially without ‘us’. I shared all of the frustrations of planning to plan, not planning to do, and also the realistic situation the programme is in (funding, or lack of, being the driving force for prioritization), and the choice of priorities (which I had been involved in) informed by criteria I had helped create and that fitted with other considerations such as engaged clinicians and achievable outcomes – which means things get done and change is realized – a reoccurring request from our group!

I handed over to the speaker and a lead for their reflections, as the temperature in the room was building (metaphorically and literally).

After a deep breath, I said that we’ve got it wrong. We’ve asked the wrong question, which means that we’ve got the wrong answers (or rather not the answers we needed). We hadn’t briefed or introduced the objective clearly enough. As the feeling of utter despair (at myself!) started to pass, the criticisms (which I was now starting to see as constructive) were used to make sure that we had clarified what the right question should be, and agreed to send through a proforma to continue the exercise via email.

We talk often in the group about the importance of information, time, context and shared objectives, yet somehow we’d not managed to create that with this task. We’d been too driven by the task at the expense of the process.

Once I had sat down with a cup of tea and reflected on the internal commentary that was going on in my mind, a few things struck me…

•  f If I’m impatient hearing the same things again, maybe people aren’t feel heard each time they raise them? How do people feel ‘heard’ when the topics and questions are so complex with so many variables in the system?
• How much should we be pushing for an ideal world? How much should we be trying to work with what we’ve got? Acknowledging that waiting for the ideal world is like waiting for Godot? Do we do nothing while waiting to change everything?
•  The NHS is suffering (and in the end the patients are suffering) from an industry of planning to plan. Impatience with planning and strategy is rife (rightly so). How do we manage expectations of planning and time for programmes to deliver? We need to really challenge and support the NHS with this agenda. On the other hand, if we find these aspects too frustrating, are there other ‘PPI’ or patient leadership opportunities better suited to these people? At the strategic level, no matter how successful, tangible and direct impact isn’t always quick or clear. Other levels such as service improvement or projects ‘on the ground’ could suit some people better?  
• With limited time and resources, is it ok to prioritise engagement activities? I think it is. If we prioritise and get it right, we can do really successful and impactful co-design work around care pathways, and leave discussions about procurement of devices, image sharing agreements between Trusts and high speed IT links to be updated on. There is a continuum of engagement, and aspiring to co-production is good, but sometimes, with limited time and resources, I’d rather get the pathway engagement right with co-design, and have more traditional update/feedback/informing approaches for very ‘back-office’ functions. Quite a nuanced message to communicate!
•  It felt really good to say I was wrong! Not something I ever thought I would say, but it was a relief to be able to admit this in the group. It is not about blame, and the deficit of planning by the speaker was a serious shortfall, but accepting my role in getting it wrong felt important for my leadership role.
• I’m sure I’ve sat in groups that I’ve not been chairing and made the Chair feel as I felt during that session, so it reinstalled for me the need to be clear and challenging but remain solution focused in conversations.  
• Being realistic doesn’t mean that us ‘patient rep types’ are going native. But I can see how it might be interpreted as such. That balance between realism and native could be a fine line though, and as a peer network nationally, we can really help hold mirrors up to each other to challenge this.

I’m now proposing with the leads to put two really practical things in place, from all of this learning.

1. An agenda that clearly states the objective for each session to help clarify and focus discussions. This is important when we are taking up the time of people in our local community. Most agendas don’t actually have this, and it can be quite fluffy!

2. A brief for speakers that sets outs the timings, considerations for presentations context (such as what do the group already know on this topic – we are a very informed audience!), and what methodology have they got to achieve the objectives of the session. 

Although in the moment, I confess to nothing but sheer panic and fear, I now realize that this meeting exemplifies the strength of the group and the culture that we have created, where members are happy to challenge and hold us up when not getting it right. As uncomfortable as that is in the moment, I wouldn’t have it any other way, because that's how good teams of patient leaders should work together, and consequently with the system.

As a Chair, I can’t always get the questions right, but if I can get the culture and environment right, for people to challenge me when I get it wrong, that's ok. I am lucky to be surrounded by such a great team to do this. 

I wanted to share this as a blog to help structure my reflection on the events, and to hear how other people might managed the situation or any tips/suggestions... feel free to comment below! Thank you in advance for supporting my learning curve with this!