South West Cancer Alliances’ Patient and Public Engagement Event
28th July 2017
Hyde Park Conferencing Centre, Taunton Rugby Football Club

BREAKOUT SESSIONS

13:00Review of SW patient and public participation:

What do we know is happening currently?

What works well?

What could be even better if…?

13.40Levels of participation and co-design:

How can our patients’ and public help us in the service planning and redesign to deliver the strategy?

14.10 Break

14.30Going forward:

Agreeing the approach and next steps

Thank you for everyone’s input into these sessions – there were some really engaging conversations throughout the room; where we broke into 7 working groups. Please see below notes from the discussion points that were raised:

What do we know is happening currently?

  • Existing groups:
  • Patient Participation Groups (PPGs) and Site Specific Groups (SSGs)
  • Cancer User Groups – any cancer, discussing how we can improve the service
  • Cancer patient reference groups
  • Self-help and support groups – run by a professional peer support
  • Healthwatch
  • Gloucestershire Patient Reference Group meet every 2 months
  • Some look at pathways across boundaries & health and social care & commissioning
  • Wiltshire CCG hold patient engagement events throughout the year (on varying topics).
  • Village agents are working with Gloucestershire to help provide support.
  • Voluntary and Community Sector (VCS) organisations (particularly smaller cancer and tumour specific charities) have a lot of useful intelligence and data

What works well?

  • Gloucestershire Patient Reference Group carry out the following:
  • hold an engagement evening event;
  • are involved in document scrutiny;
  • are living with and beyond cancer (LWBC) focused;
  • develop resources;
  • feels independent and able to challenge
  • wrote 2ww patient leaflet;
  • engagement events started withCCG/ PPE team;
  • business case development input to development;
  • ensuring elements of choice.
  • Health Coaches:
  • Have time to discuss patient’s needs and develop trust;
  • Signpost patients to services;
  • Empowering on a 1-2-1 basis;
  • Tackles loneliness (once per month).
  • We Hear You (cancer charity):
  • Offers counselling services
  • Patient forums across the region
  • Wiltshire has a GP Care Co-ordinator for high risk patients that works across the GP surgeries. Also have health trainers.
  • There is some small funding support for the local groups
  • Independence – cancer user groups rather than patient reference groups
  • SU group would set their own agenda rather than working to patient rep / commissioning agenda
  • Professionals come by invitation to groups
  • There are a lot of good PPGs
  • North Bristol has self-management courses that work well. The patients lead the course, which also involves clinicians.
  • North Bristol are very good at communicating feedback and reviewing results afterwards – they can ensure that any following groups or events that they hold are relevant and engaging.
  • They also feedback to individual wards and nurses, so that the people delivering care are aware of feedback.
  • Gloucestershire ensure that when they carry out any surveys or feedback, that they have an action plan from this. They then look at whether they have carried out the subsequent action and whether it worked.
  • Patients in North Bristol and Gloucestershire are involved in steering groups and planning of services within the trusts.
  • Patient panels in the hospitals have a very strong voice.
  • Macmillan have just opened a cancer information centre, where patients can receive information and support throughout their cancer journey.
  • Patients and the public have been involved from the initial planning stages to make the centre comfortable, to provide relevant information and a good service for the community.
  • RD&E approaching patients individually (hospital groups)
  • Examples of P Practice support groups
  • Site specific group work e.g. risk stratification
  • Patients/public are supported well to be involved (raining/refreshers)
  • Cancer Information Centres play an important role in engaging with patients and their experience and issues

What could be even better if…?

  • Complaints and feedback:
  • some people have a fear of complaining;
  • feel may affect their subsequent level of care;
  • feel that feedback is not welcome;
  • will not make a difference;
  • some patients are reluctant to answer GP surveys as they feel that they could be identified by their handwriting.
  • Pathways across boundaries / regions / alliances, and also across health & social care.
  • Need to focus on the whole pathway, especially the beginning, which will include people who are in the end diagnosed as not having cancer.
  • Talk to people about whole of life – imparts on them.
  • Bring consistency to recognising and responding to the National Cancer Survey results – and being held account by NHS England, but also patients.
  • Healthwatch (reports, intelligence) involve them in this area.
  • Use Healthwatch to reach out to people and community often not well represented. Eg Somerset Healthwatch has visited Lunch Clubs and Stroke Clubs with specific questions about stroke.
  • Involve people without people having to physically come to meetings.
  • Celebrate successes – “You said, we did”. Share and celebrate what’s changed.
  • Don’t lose more capacity to clinical rather than patient involvement / share patient concerns – and keep it cancer specific.
  • More support for carers as more and more is put on them.
  • More funding and meeting across each alliance - where groups can go through where support is lacking.
  • Needs to be a mechanism for renewal of representatives, to provide fresh experience and perspectives.
  • Attract younger group members / new members.
  • NHS needs to publicise presence of groups, with better communication of what exists and what’s working well.
  • Ensuring that each GP practice has a PPG and that they are engaging with them.
  • Do the general public and patients know what support groups / patient groups are available and what their purpose is?
  • Better use of traditional media and social media – to communicate alliance work and involvement groups.
  • Also to engage better
  • Online forums and social media and support groups should also be proactively used
  • Different GPs have different working practices – need more consistency, as some practices and GPs are more forward thinking in their approach to cancer care.
  • Better recruitment of users for groups
  • there needs to be a clear reason for them to join the group
  • not just a tick box exercise – finding something meaningful for people to attend / to do at the meeting
  • Need clinicians and patients to be in a room together to design services
  • Keeping the impetus: allocate specific work
  • Clear and consistent communication: same for professionals and public. Make sure work well co-ordinated
  • We can be sure work is embedded, so that it feels valued: feedback/process
  • We understand how to work with people who are very passionate about a specific issue
  • Dispel jargon- care with language
  • Patients can still feel a sense of being done to. National drives can bulldoze patient experience
  • Learn how to bridge the gap (those who know the system/agenda). Use of technology?
  • User involvement in strategy, everything else follows
  • Participants should not be there in a passive capacity
  • Demonstrate what changes result from participation, such as:
  • Empowerment
  • Patients audit change and feedback on impacts
  • Patient portal – being developed as part of LWBC bid – could also be used for real time feedback

How can our patients’ and public help us in the service planning and redesign to deliver the strategy?

  • Diabetes UK – the patients vote on projects that they feel should be funded. Patients should have more involvement in the cancer alliances, especially when it comes to where the money is spent.
  • Create a services auditing patient group??
  • Have a PPE sub group for each alliance, with a representative from this group who can site on the board for each alliance to feed in from a patient’s perspective.
  • Information – patient should be more involved in screening, referral/choose and book. Learn from Gloucestershire’s engagement and experience.
  • Peer review / national standards. Quality mark (national patient and public involvement (PPI) indicator).
  • Cancer care review – engage with patients at this point?
  • Co-design, with patients and public, around different aspects of interactions (HNA, RP & care review) – timely, appropriate, etc – across the whole pathway.
  • GPs extended access – discuss with community about access to services and what will meet people’s needs.
  • GP ‘difficult’ conversations – co-design / influencing GP training.
  • Involve carers too
  • Expertise is required for patient involvement, as not everyone would feel comfortable sitting in a room with professionals and being able to hold their own.
  • Make it less time consuming to be involved in groups
  • Being involved throughout all stages of planning and redesign
  • Hospital volunteers
  • Steering groups? How invited? Hospital CNS often a good link and judgement (but don’t make assumptions)
  • Invite patient stories: clinical programme groups: capture in different ways (words/videos/photos/men/women)
  • Patients who offer to become involved!
  • Do we use “high volume” points in patient pathways?
  • Publicise that we need voices
  • Run virtual groups
  • “You said, we did”- feed back
  • Surveys-patient/carer feed back
  • Using “members”
  • Consider how to reach younger people: TYA? Facebook, Twitter, Youtube. N.Bristolwork, on-line, texts, pop-ups, Apps?
  • Consider care homes and homeless. BME populations
  • Healthwatch e.g. volunteers to meet people and discuss their experience
  • Do we use “influencers”? local community champions and well-known local people
  • Mapping and scoping of involvement opportunities
  • Ensure it is co-designed including:
  • “We said, we did” rather than “you said, we did”
  • patients running a co-facilitating
  • a patient run conference
  • enough time is given to do it properly
  • don’t have pre-set agendas
  • Ensure participants are properly briefed including giving pr- reading information

What would you prioritise?

  • Can we co-design, with patients, carers and clinicians, the cancer care?
  • Patient groups should be more involved in the planning of services and pathways
  • Review this together;
  • Use this as a key mechanism to get feedback on patient’s experiences;
  • Use this to recruit patients and carers into future structures.
  • The structure needs to feed up – to strategic level as well as local levels.
  • Health inequalities / seldom heard groups
  • Make sure that they have the same opportunities to get involved as everyone else does to address their different outcomes.
  • Get a broader age range of group members:
  • Develop social media – create an app? Utilise Facebook (closed group)?
  • Broader mechanisms, not all about meetings
  • More inclusive materials – specific branding, etc.
  • Use existing engagement networks, for broader engagement
  • Do patients have enough informed information? Are we educating patients and do they feel valued throughout their journey?
  • Provide training for patients and the public – around make-up of the alliances and workstreams, and how they can be involved
  • Patient groups and site specific groups:
  • Define a patient’s role within the group
  • Provide training and support to fulfil their role
  • Ensure that they have a purpose
  • Better use of traditional media and social media to communicate the groups available, plus information on cancer / cancer alliances and the work they are doing.
  • Develop shared understanding
  • Language
  • optimised technology
  • offer of support
  • “It’s their story not ours”

Going forward / feedback:

  • Create a menu of opportunities for a patient’s cancer journey;
  • Including signposts to where to access information.
  • Need more joined up structures – scope the existing and where the gaps lie. Don’t just replicate what is already there.
  • Need a system where you can feed information up and down the line effectively.
  • Training (cancer voices programme) for chairs of meetings and patients, e.g. for SSGs
  • Encourage new members to join these groups
  • Capacity to develop and deliver PPI.
  • Wessex Voices are an interesting model – some of their aspects could be used in the South West
  • “you said, we did”
  • “If not, why not”
  • Survey fatigue - beware
  • The resource:
  • Use existing groups; 3rd sector; cancer; non-cancer
  • Local high profile figures/radio/print/paper
  • Develop the pool-use good examples
  • Patient portal
  • For NHS staff: how to use your patient voice to help you