PUBLIC INVOLVEMENT IN HEALTH

COMMUNICATION AND INVOLVEMENT WORKSHOP

17^TH SEPTEMBER 2001

Jo Yelland

Project Manager, West Cornwall Hospital Services Review,

West of Cornwall Primary Care Trust, Josiah Thomas Memorial Hall, Trevithick Road, Camborne, Cornwall, TR14 8LQ

Tel: 01726 833270

Email:joyelland@beeb.net                                                                                       

Aims of the Workshop                                                         

Definitions – what we mean by public involvement                 

Recent local experiences of public involvement                      

Tools and Techniques                                                         

Listening to the “Silent Voices”                                             

Support and back-up                                                                     

What the authorities need to do to make involvement as real as possible                                                                                    

Techniques for facilitating community involvement                                      

Aims of Workshop

The aims of the workshop were:

1.To explore issues around informing, consulting with and involving local people in services and decisions that affect their health.

2.To share good practice from West Cornwall and elsewhere.

3.To apply this learning in developing a communication and participation plan which will inform the West Cornwall Hospital Services Review currently taking place

Definitions - what we mean by public involvement

“The public” what do we mean?  

• The general public - everybody who lives within a certain geographical area – citizens
• Residents - of a particular neighbourhood or locality
• People who use a set of services – such as people with mental health problems, or users of the council’s leisure services
• People who share a common interest, experience or identity – such as people from ethnic minority communities or from the homeless community
• Excluded Communities – in defining the “public” the silent voices – those hardest to reach also need to be identified

Involvement – what do we mean?

Involvement is not the same as consultation although they can be seen as two ends of the same spectrum:

  Involvement means finding ways in which people feel they are an essential part of a decision making process, and that their involvement makes a real difference to what is decided.  It is a continuous process with long term as well as short-term goals.  If people have never been involved before, they will need information and support to get involved in a meaningful way.

Working at different levels 

There are five levels at which public involvement needs to operate, in order to be effective:

Grass roots level – working directly with individuals

Community networks - working to support different community forums

Professional networks – working to build alliance and partnerships

Organisation development – working to change the ways organisations work

Co-ordination – making sure the different levels interact and work together

Some benefits and outcomes of public involvement:

For individuals

People would see change happen as a result of their involvement, and so feel taken account of

People would be aware of why decisions were being made, and why priorities have been set

People would become more actively involved in their communities

For communities

There would be better communication between community groups

Communities would feel more powerful in meeting local needs and influencing decisions

They would be given resources to go out and involve more people,

For organisations

Organisation would be more honest about what could be done and what cannot,

There would be openness about organisational priorities

There would be less short-term decision-making

Recent Local Experiences of Public Involvement

Small groups brainstormed the following list of recent examples of when they had participated in, or been involved in instigating local public involvement exercises:

• Local Government re-structuring
• Mental Health National Service Framework
• West Cornwall HealthWatch “The People’s Option”
• Respite services for people with learning disabilities
• Cornwall NHS Acute Services Strategy
• “No secrets” services for vulnerable adults
• Designated services for young people
• Community “Planning for real” events
• Federation of Isles of Scilly Schools
• Pensioner Group letter and meetings
• Elderly people with psychiatric disorders (EPD)
• Red Cross service review
• Town centre regeneration
• Crime and Disorder Community Safety Questionnaire
• Cornwall NHS consultation on new PCT’s
• National Strategy for Arthritis Care
• PTA fundraising
• Penzance Promenade
• Review of 700 residents in assisted housing
• CHC survey of wheelchair users
• Camborne and Redruth Regeneration Plans
• Mobile Phone Mast Enquiry
• Highways Department footpath enquiry
• CHC one-to-one discussions with health service users

From their own experiences the groups identified the following characteristics of effective and ineffective public involvement:

‘Involvement goes well and is positive when …’

• there is a perceived personal or community impact and the involvement presents a real opportunity to influence change
• the outcome of the process prevents unwanted change
• providers and services users come together in a focussed and meaningful way
• there is a clear sense of direction – the desired outcome is clear, benefits are explained
• people are properly informed, when explanations are clear and in meaningful language
• it reaches the right people  – including the hard to reach
• there is a “dialogue” and people are listened to
• people are confident that the process is real and that the outcome is not already fixed
• effort is put into the planning process
• when there are helplines for clarification and questions
• people feel personally involved – meetings are held in small groups and
• the process helps everyone to have a voice – not just having to stand up in public
• involvement is practical (planning for real, patients journeys)
• prompt accurate feedback
• boundaries and timescales are clear
• there is trust

‘Involvement does not go well when …’

• issues are not clearly understood so dialogue is distorted
• too narrow a group is consulted
• provider responsibility is unclear
• not carried to the end – exercise must be evaluated to assess what is achieved
• written material is viewed as junk mail
• representatives do not report back to their organisations
• consultation is not genuine – when there are no choices
• people are asked loaded questions
• conflict of interests in the outcome
• it is a written exercise
• done in large groups and people feel talked at
• the language used is not common
• bias is apparent
• not enough time of information given
• nothing appears to happen afterwards
• only the loudest voices get heard
• full feedback is not given
• there is a history of mistrust

Tools and techniques  

          Participants discussed their own experiences of being consulted and in trying to consult or involve people in planning their own services and suggested these as effective ways of engaging and involving citizens in planning local services:

• Variety of techniques for each idea
• Communication responses that are matched to the needs of recipients
• Face to face interviews/discussions
• Small groups to make people feel more comfortable
• One to one keypad voting to encourage representation from small groups
• Involvement of community leaders and natural networks e.g. W.I.
• Taking the information away from the centre and out to where people are in natural settings such as shops, supermarkets, schools, colleges, workplaces etc
• Getting the media involved in genuine debate on all the issues
• Expert Panels (Young People Cornwall, Citizens Panels)
• Fun days, community social events
• Planning for real or patients/user journey events – making the issues “real” for people
• Websites
• Networking through exisiting community fora
• Some questionnaires/surveys
•   Mail shots/newsletters

Listening to the “Silent Voices”

All the groups raised the importance of not just listening to those who shout the loudest, the following “silent voices” were identified:

• Elderly
• Housebound
• People with mental health problems, learning and/or physical disabilities
• Ill people; patients in hospitals
• Rough sleepers
• Single parents
• Low wage earners
• Those living in remote rural areas
• People living in poverty
• People with limited access to private and/or public transport
• Carer’s
• Residents of nursing homes
• Ethnic minorities
• Young people
• People not members of recognised groups
• People with substance misuse problems

Support and backup

We asked people to:

Think about any way in which they as individuals or their group/organisation could help to ensure that local peoples’ voices are heard & involved – in the future & in relation to the West Cornwall Hospital Services review?

What support they would need from the authorities to help to do this?

They told us:

Support that organisations would need

• Volunteers would need training and funding to cover costs of co-ordination
• Some organisations would need some financial support to covers cost of staff time
• An expert advisory service on the drawing up of questionnaires and their evaluation
• Newsletter/articles that could be included in newsletters and magazines
• Reference point for queries – how about a telephone advice line?
• Clear information on the choices and the implications of them
• Some financial support to go out to people and/or set up small groups

What the authorities need to do to make involvement as real as possible     

In general:

• Link in with other organisations both voluntary, statutory and religious groups to establish a co-ordinated approach to public involvement
• Information: make sure it is clear, accessible and relevant to all audiences and large print/tape versions are available
• Ensure commitment and resources to enable involvement to be real – bottom up only works if the top wants it to.
• Invest in more people on the ground – outreach community workers
• Develop CHC replacement organisation to their maximum
• “Its too late now” have policies to stop this in future
•  Be very clear and open about money
•  Be realistic and explain the options fully.  What can be done differently – what can be done safely – can it be afforded?
•  Recruit and train a team of facilitators to get to a larger number of people in small groups
•  Use as many of the tools and techniques as is practical to communicate the full proposals and to give feedback
•  Provide secretarial and professional support to enable voluntary organisations to be fully involved
•  Use professionals to help design and produce written materials
•  Use existing networks to cascade information
•  Feedback – see the process through to develop trust

Techniques for facilitating community involvement

Many of the most frequently used methods of involvement include the list below - which is a ‘menu’ of different approaches and techniques which can be used on their own or in any combination.

advocacy groups

application forms for funding which ask specific questions re: community involvement

arts groups working with local community

cascading invitations out to the wider, ‘non-involved’ community

citizens juries

conferences (participatory)

drop in sessions

focus groups

forums of various sorts with regular meetings

fun days and events

informal contacts and approaches of all sorts

joint user/agency planning/steering groups to plan exercises

lunches for information exchange

media of all kinds

meetings of various kinds

newsletters compiled by local people and/or agencies

outreach - talking to people in their own settings

panels of users, or carers, or community members

participatory needs assessments

planning for real

presentations to public with different options

regular surveys of different kinds, with feedback

seminars with outside facilitators

talkback schemes

training and coaching courses

visits and walkabouts to areas/groups

workshops (participatory)

Choosing an appropriate method is a lot to do with common sense, asking yourself who you want to involve, why they will want to get involved, what would they respond to, and then asking where and how it would be easiest to reach them.