NHS Citizen Assembly Learning Report March 2016

Table of contents

Table of contents .............................................................................................................................. 2 Introduction........................................................................................................................................ 3 About NHS Citizen ........................................................................................................................... 3 Purpose of the report ....................................................................................................................... 3 Summary of learning ........................................................................................................................ 4 Recruitment and diversity of voices ............................................................................................... 4 What worked well?..................................................................................................................... 4 Areas for improvement ............................................................................................................. 5 Logistics - venue, catering, registration, accessibility ................................................................. 5 What worked well?..................................................................................................................... 5 Areas for improvement ............................................................................................................. 6 Workshop discussions ..................................................................................................................... 6 What worked well?..................................................................................................................... 6 Areas for improvement ............................................................................................................. 7 Information and evidence packs .................................................................................................... 8 What worked well?..................................................................................................................... 8 Areas for improvement ............................................................................................................. 9 Communications and wider engagement ..................................................................................... 9 What worked well?..................................................................................................................... 9 Areas for improvement ........................................................................................................... 10 Impact and influence...................................................................................................................... 10 What worked well?................................................................................................................... 10 Areas for improvement ........................................................................................................... 11 Next steps............................................................................................................................................ 11 Appendix .............................................................................................................................................. 12 NHS Citizen Assembly Evaluation form answers...................................................................... 12

2

Introduction About NHS Citizen NHS Citizen is a national programme which aims to get citizens more involved in the NHS. NHS Citizen was commissioned by the Board of NHS England to give everyone in England a voice on how the NHS works and enable the public to influence NHS decision making The NHS Citizen programme has been designed and developed with the help of citizens. A key aspect of the programme is that we are committed to learning in public and listening to citizens’ views on how we can continue to improve the programme.

Purpose of the report This report reflects on the first official NHS Citizen Assembly which took place at the ExCel Centre in London on the 25th November 2015. It uses the immediate feedback we received on the event to ask what worked well and what could be improved in the future. The main sources for this report were evaluation forms completed by the Assembly participants, monitoring data, contributions to the ‘learning wall’ (where thoughts were collected during the event) and comments from the team as part of debriefing meetings after the event. The report is primarily intended for use by the NHS Citizen team and those involved in the co-production of the programme. It will help inform the learning and design of the next phase of NHS Citizen. NHS Citizen is also undertaking a wider learning programme where we will be reviewing and analysing what has been learnt so far from the project to support its future improvement. As part of this learning programme there will be further opportunities to reflect on NHS Citizen and activities like the Citizens’ Assembly. A full report on the discussions and outcomes of the Citizens’ Assembly is available here.

3

Summary of learning Recruitment and diversity of voices What worked well? “Really enjoyed the opportunity to meet people from a range of backgrounds and share experiences” The Assembly was attended by 250 people from a diverse range of backgrounds who were all able to bring their unique insight and experience to discussions. Many of these participants had little experience of sharing their views on healthcare or influencing decision-making:  69.4% of registered attendees had never attended an NHS Citizen event before  42.5% of registered attendees had never participated in any other NHS meetings, forums or workshops.  Registered participants were more diverse than the national average in terms of ethnicity.  Over half of registered attendees were female.  There was representation of all 8 age groups (under 20, 20-29, 30-39, 40-49, 50-59, Figure 1 Participants in the mental health workshop 60-69, 70-79, 80+), with no



one group representing more than 20% of all registered attendees. 38% of registered attendees identified as having a disability, long-term illness or health condition

This diverse mix was made possible through a targeted recruitment strategy. 100 places were made available on a first come first serve basis and the remaining 150 were offered to people from diverse and marginalised groups, the organisations who represent them, and other targeted groups. Although this approach was labour intensive it was successful in delivering a mix of people and allowing people who had no previous contact with NHS Citizen or other healthcare engagement forums to attend.

4

A number of people commented that they enjoyed meeting people with shared interest in an issue and that the event was a good way to expand their network. Areas for improvement “We need a minister for health and his deputy. We need a number of NHS Board members. We need some CCGs leads.” Targeted recruitment became easier once the 5 issues had been identified but this meant that recruitment was quite rushed. It would be easier to get a diverse mix of people in the room if there was longer between the Citizens’ Jury and the Assembly. Some people felt there were key voices missing from the conversations. For instance a number of participants suggested it would have been beneficial to have representatives from Department of Health and other decision makers in the healthcare system listening and contributing to discussions. Key learning:  A longer gap is needed between the Citizens’ Jury and the Assembly to allow for successful recruitment.  The success of the Assembly depends upon achieving a diversity of voices and making sure that there a number of senior NHS decision-makers in the room.

Logistics - venue, catering, registration, accessibility What worked well? “Food was brilliant (halal/ vegetarian)” The Citizens’ Assembly was a one day event held at the ExCel Centre in London. Almost 300 people registered to attend and the first-come first-serve list was booked up in less than 24 hours. The venue was spacious and accommodating with easy access between the plenary and breakout rooms. The catering was of a high standard and most dietary requirements were provided for. In general participants and the team felt the event was well-organised and ran smoothly. All accessibility requirements identified on registration were responded to and met wherever possible. Speech to text and British Sign Language interpretation were provided in the plenary discussions as well as one-on-one Farsi interpretation and designated accessibility support staff in all workshops. 5

Areas for improvement “It’s a long way out!” The venue was not centrally located which made it difficult to access by public transport. The air conditioning system failed during the event which meant that some rooms were very cold for part of the day. Registration for the event was operated through NHS England’s online booking system which some people found confusing and difficult to use. A number of people found it difficult to work out whether or not they were able to attend and if their places had been confirmed. Some participants commented that they would have liked to be able to register for workshops in advance of the event and felt that time was wasted by people choosing their workshops on the day. A few participants felt more accessibility support could have been offered prior to the event. One of the breakout rooms was smaller which made it difficult for wheelchair users to move around. It was difficult to hear when all the table discussions were underway. Some participants would have liked easy read material to have been made available before the event. Key learning:  The Assembly should be held in a central location that is easy to access from mainline stations.  Consideration needs to be given to improving the online registration system, including making it more accessible for people with learning difficulties and providing alternative registration options e.g. by phone  There should be a dedicated contact for accessibility to provide support before the event and liaise with the venue.

Workshop discussions What worked well? “One of the best events I have attended in terms of involving participants - I thought the staff were terrific”

6

Most of the day was spent in workshops around the 5 issues. Participants were able to choose which workshop they would like to attend on the day. Participants in each workshop were asked to think about their issue and discuss what the situation looks like now, what better might look like and what needs to happen to get there. Productive and lively discussions took place in all the workshops. A majority of participants rated the workshop Figure 2 Table discussion in the Preventing Premature discussions as ‘useful’ or ‘very useful’ Deaths workshop in helping them to understand the issue, to understand the issue from someone else’s perspective and to think about what action could be taken by NHS England. The graphic drawings provided a dynamic and informative record of the workshop discussions.

Several participants commented that they thought the issues were interesting and well-chosen. Some people would have liked to be able to attend more than one workshop. The workshops were designed to ensure that all participants were able to contribute their views and be heard. This worked well and, on the whole, the workshop discussions were inclusive and respectful. When asked “what words best describe your experience of the Citizens’ Assembly?” the words chosen most frequently were; inclusive, thought-provoking, productive and interesting. Areas for improvement “We all got things “off our chest” but have we created a way forward?” Several participants commented that the table discussions could at times go off-topic and could be dominated by loud voices. A number of people suggested that it would have been useful to have facilitators on each table. Other suggestions for maintaining group focus included making the workshops more interactive or making them shorter. Some discussions may have benefitted from stronger facilitation to ensure everyone’s voices were heard. A few participants found the tone of discussions 7

overly critical and negative towards the NHS. A few participants felt that some of the lead facilitators spoke too much or interrupted the flow of discussions. When asked how useful they found the workshops in achieving a number of objectives most participants ranked the workshops least useful in improving their understanding of how decisions are made within the NHS. A number of people would have valued more information from NHS England on current provision and challenges facing the system. The event highlighted a tension between providing enough information to enable informed and useful discussions and ensuring that the event is accessible and engaging for all participants. The use of acronyms and complicated language made it difficult for some people to follow the presentations and table discussions. Key learning:  Participants as well as presenters and facilitators should be briefed on using easy to understand language. There should be no assumed knowledge about the issues or how the health service operates.  In order to enable everyone to participate fully in the Assembly it would be useful to make additional information on the issues and the NHS available to individuals that request it.  Facilitators should be well-supported and closely involved in the process design of the workshops. Training sessions before the event could be offered to facilitators and other people in citizen roles.

Information and evidence packs What worked well? “Information packs were very helpful and info provided suggested the NHS has some direction of how it wants to see services move forward” Participants were given printed evidence packs on arrival which contained information about each of the 5 issues and context to the Gather discussions. A large number of easy read packs were also available which contained simplified information with pictures. A majority of participants thought that the information provided before the event and the information packs were useful. The easy read packs were particularly wellreceived and used by a number of participants.

8

Areas for improvement “Could be a bit more succinct and easy to digest – less jargon” The evidence packs were quite lengthy with a lot of text which made them hard to read. A number of participants felt that the information was not easy to understand and was too wordy. The packs were not widely used by participants or referred to during the event. There was a short window for the production of the packs and last minute changes to the content meant that the process was very rushed. The short timeframe between the Citizens’ Jury and the Assembly meant that there was not enough time for an open call for evidence or for the content of the packs to be significantly co-produced as planned. Some participants noted omissions or inaccuracies in the evidence packs. Not all participants received practical information about the event by email in advance. Some participants would have valued receiving the evidence pack before the event so that they had time to read it. Key learning:

 

Sufficient time should be built into the event planning for the production of evidence packs and review of information. All efforts should be taken to ensure that the information provided before, during or after the event is accessible and available in different forms.

Communications and wider engagement What worked well? Significant efforts were made to ensure that people who were not able to attend the Assembly in person could participate in the event and follow it online. The Assembly was live webcast with an online forum so that those watching the event remotely could contribute their comments to discussions. The webcasts can continue to be watched online and have been publicised through social media. Each workshop had a team of social reporters tweeting in real-time what was happening in the workshops and inviting a wider online conversation about the event and discussions. The main #NHScitizen hashtag trended for a period. Twitter conversations are available to view online:  Support for people with dementia post-diagnosis  Comprehensive psychosocial approaches to mental health  Preventing premature deaths 9

 

Improving health outcomes for looked-after children and young people Transparency in Clinical Commissioning Group decision-making

Young representatives from Future Pulse, an organisation which works to improve access to health and wellbeing services for children and young people, interviewed a number of participants about their experience of the day. Having people external from the NHS Citizen team reporting on the event helped promote the concept of ‘active citizenship’. Areas for improvement “Look at ways to advertise NHS Citizen, had not heard about it until I stumbled across this a month ago!” The majority of online engagement was over Twitter or from people watching the webcast after the event. The social reporters found it difficult to feed comments from online back into real time discussions without interrupting the process. A number of participants would have liked the outcomes of the previous year’s Assembly to have been communicated more directly. Some people also felt that the Assembly and Gather process had not been publicised widely enough and were disappointed to have missed out at the chance to raise and vote upon the issues. Key learning:  It is worth exploring alternatives to using the webcast forum and social media to feed into discussions. One option could be to run a ‘digital Assembly’ which would run parallel to the main event with a dedicated online facilitator.  Feedback from the previous Assembly should be built into the agenda for future Assemblies. This should include progress against what was discussed.

Impact and influence What worked well? “The personal contact with members of the NHS Board and senior staff in NHS England, especially in the workshop has given me far more understanding of the challenges faced by NHS England Board and senior management” The Assembly was well received by board members and senior NHS staff. In his closing plenary Malcolm Grant, Chairman of NHS England, reflected that the 10

discussions that had taken place were “so much more profound” than what might be expected from standard consultation exercises. Participants overwhelmingly rated their experience as good or very good although a majority were unsure whether the event would positively change the way they think and talk about the NHS. Areas for improvement

Figure 3 Participants in conversation with Simon Stevens, Chief Executive of NHS England

“it’s essential that something tangible comes out of the event.... future credibility is at stake” Many participants and presenters were sceptical about whether the event would have any impact on NHS policy and decision-making. Several people questioned how the issues would be followed up and how progress would be communicated. A number of participants would have valued a recap and update on what was decided at the last Assembly. Key learning:  

It is important that NHS England’s progress on all of the issues is tracked and communicated regularly. An update on progress since the last Assembly should be built into the event’s agenda.

Next steps A number of learning activities have been planned (commencing January 2016) to look back at the NHS Citizen programme. This learning programme, themed “NHS Citizen: What it is and what it could be”, will also look in more detail at some of the key ideas underpinning NHS Citizen such as citizenship and co-production. More information on these activities and how to get involved is available on our blog.

11

Appendix NHS Citizen Assembly Evaluation form answers Total responses: 95 Note: Response rates vary for each question, percentages are taken from number of respondent for each question.

Q.1 What motivated you to attend the Assembly? Individual answers not listed

Q.2 Which workshop did you join? Support for people with dementia post-diagnosis Comprehensive psychosocial approaches to mental health Preventing premature deaths Improving health outcomes for looked-after children and young people Transparency in Clinical Commissioning Group decision-making

12.77% (12) 25.53% (24) 25.53% (24) 10.64% (10) 27.66% (26)

Q.3 How would you rate your overall experience of the Citizens’ Assembly 1 Very Poor 0.00% (0)

2

3 4.35% (4)

4 7.61% (7)

5 Very good 36.96% (34)

51.09% (47)

Q.4 How useful did you find ….

the information provided about the event

1 Not useful

2

3

4

5 Very useful

1.18% (1)

4.71% (4)

18.82% (16)

42.35% (36)

32.94% (28)

12

the information packs

2.63% (2)

1.32% (1)

14.47% (11)

47.37% (36)

34.21% (26)

Q.5 We try to make our events as inclusive and accessible as possible. How satisfied were you with the levels of accessibility at this event?

Physical access (mobility) Sensory access Access to information e.g. language or format

1 Not satisfied 5.19% (4)

2

3

4

1.30% (1)

11.69% (9)

35.06% (27)

5 Very satisfied 46.75% (36)

4.23% (3)

1.41% (1)

16.90% (12)

28.17% (20)

49.30% (35)

1.54% (1)

1.54% (1)

18.46% (12)

29.23% (19)

49.23% (32)

Q.6 How satisfied were you with the support provided by the NHS Citizen team during the event? 1 Not satisfied 1.23% (1)

2

3

4

0.00% (0)

7.41% (6)

33.33% (27)

5 Very satisfied 58.02% (47)

Q.7 How useful did you find the workshop discussions in…. 1 Not useful

2

3

4

5 Very useful

Helping you to understand about the issue

0.00% (0)

2.47% (2)

23.46% (19)

40.74% (33)

33.33% (27)

Helping you understand the issue from someone else’s perspective

0.00% (0)

3.66% (3)

19.51% (16)

28.05% (23)

48.78% (40)

13

Thinking about what action could be taken by NHS England

1.22% (1)

9.76% (8)

21.95% (18)

41.46% (34)

25.61% (21)

Improving your understanding of how decisions are made in the NHS

2.50% (2)

23.75% (19)

35.00% (28)

21.25% (17)

17.50% (14)

Q.8 Do you feel that how you think and talk about the NHS will positively change as a result of your experience today?

1 Strongly disagree 2.33% (2)

2

3

4

5 Strongly agree

5.81% (5)

46.51% (40)

30.23% (26)

15.12% (13)

Q.9 What words best describe your experience of the Citizen’s Assembly (circle up to 3 or choose your own)

Fun Difficult I did not feel listened to Too simplistic Confusing Boring Inclusive Different Thought provoking Rushed Productive

20.69% (18) 6.90% (6) 3.45% (3) 4.60% (4) 5.75% (5) 0.00% (0) 29.89% (26) 11.49% (10) 67.82% (59) 9.20% (8) 39.08% (34) 14

Waste of time I felt listened to Respectful Interesting Too long Other (please specify)

0.00% (0) 19.54% (17) 22.99% (20) 56.32% (49) 11.49% (10) 13.79% (12)

Q. 10 Any other reflections or suggestions for how to improve the Assembly in the future? Individual answers not listed

15