Nothing about us without us

Elevating the voices of cancer care patient representatives at Norfolk and Waveney Integrated Care Board.

“We’ve always wanted to develop our approach to patient public involvement. Like all Care Boards and clinical networks, we aspire to co-production but don’t necessarily fully achieve it. And like all Care Boards, the need to redress the patient-provider power balance so impacted by the pandemic is pressing. This workshop really helped.“

Maggie Tween, Senior Cancer Programme Manager NHS Norfolk and Waveney Integrated Care Board

Summary

Ensuring that people with lived experience of health conditions influence and shape the direction and delivery of NHS services is, thankfully, mandatory. But, like any mandatory task anywhere, the risk of virtue signalling by tick box is massive. And virtue signalling by tick box can do even more harm to an organisation’s culture than simply doing nothing.

By co-designing a communication practice workshop with and for its cancer patient representatives, Norfolk and Waveney Integrated Care Board is supporting more balanced conversations at their cancer meetings. Investing in its patient representatives’ skills in this way is resulting in a care strategy that is truly representative of the community it serves. Recently delivered though it is, there are already signs of improved outcomes. Patient/carer representatives are more confident to speak up and share their views.

Situation

No matter the industry, inclusive cultures lead to improved outcomes. Yet, creating inclusive cultures requires more than simply inviting experts by experience or members of underrepresented communities to “speak up”. It requires giving them platforms upon which to speak up and empowering them to do so with confidence so that they can shift established power dynamics in their favour. This is particularly true in the healthcare sector.

Aware of this, and of similar work we had delivered for Cancer Alliances, Norfolk and Waveney’s Integrated Care Board’s Cancer Transformation Programme commissioned The Communication Practice to co-design and deliver a communication practice programme for its patient/carer representatives.

As agreed by patient/carer representatives, the aims were to support them to:

• Feel confident in speaking up, asking questions and challenging assumptions
• Gain the respect of healthcare professionals and make their voice heard
• Better manage their emotions during board meetings.

Solution

Speaking to those who matter most

‘Nothing about us without us’ is at the heart of all The Communication Practice practices. This is why the design element of our workshops and training programmes always begins with speaking to those whose voices most matter.

So, together with NHS Norfolk and Waveney Integrated Care Board’s Cancer Transformation Programme Manager Maggie Tween, and Sue Trohear, Cancer Patient/Carer Lead, we talked to their patient representatives about their experience of meetings.

All reported finding meetings a bit intimidating, as Maggie explains:

“Although they’d agreed to attend meetings to represent patients and carers, all our patient representatives found themselves constantly having to deal with all the behaviours of people “being busy” in the NHS. Consultants arriving, often late, being a bit rude ‘come on, let’s just get on with it because I’ve only got half an hour’, those types of behaviour. Consequently, sometimes getting them to attend meetings was challenging.

“And when they did attend, they didn’t feel able to articulate what they wanted to say. Often they hadn’t really thought through what they wanted to say beforehand. Some, not from a professional background and unfamiliar with the dynamics of professional meetings, felt intimidated by healthcare professionals and unable to speak up. Healthcare professionals, without realising it or meaning to, were contributing to this dynamic. And the power dynamic balance was tipping more and more in their favour since the pandemic. Under so much pressure to meet targets themselves, their mindsets in these meetings were sometimes more focused on the clock than the content.

“While this is something we need to and will address internally by working on our meeting culture, supporting our patient reps to develop the skills they had told us they needed would, and did, make a hugely positive impact.”

Forum Theatre

With the co-created learning outcomes in mind, we developed the outline for a 2.5 hour online workshop using forum theatre. Taking on the roles of a patient representative, a clinician and a manager, three actors provided a live scripted performance of a realistic meeting. The script, developed with input from patient representative participants interviewed in advance of the day, represented their lived experiences.

Participants watched it through once, after which a TCP coach guided an open discussion about what the patient rep did well, and what they did not so well. The performance was then re-run. Participants shouted “Stop!” and made suggestions when they felt the rep could have said or done things differently to improve the conversation outcomes.

Putting it into practice

Following the forum theatre section Syrus, our key facilitator on the day, shared his top communication tips for the patient reps to have more effective conversations and meet the learning outcomes of the day. Participants then joined breakout rooms facilitated by our actor coaches and, if they so wished, got the opportunity to practise their new skills within a safe, supported environment.

Nothing about them without them.