Chair: Bernard Forbes, UKC
Speakers: Paul Ward, THT , Ann Priddey, Commission for Patient and Public Involvement in Health (CPPIH), Janice Fox, Nottingham City PPI Forum,
Teresa Wotta Logg,
London Seminar participant,
Colin Capner,
Bristol Seminar participant,
Paul Attinello, Newcastle seminar participant,
Peter Twist and Garry Brough, Bloomsbury Patient Network
Rapporteur: Annie Temba, UKC
Patient and Public Involvement (PPI) was one of the themes of the conference and so this session was held in the main conference hall at the start of the event and all of the participants were encouraged to attend (around 350 people). It aimed to give people living with HIV and professionals the chance to learn more about PPI, what makes it work well and hear about a successful involvement project.
Paul Ward began the session by giving an explanation about how everything fits together in terms of PPI.
How do HIV services link up?
Paul first talked about the many different HIV and other services people living with HIV may interact with:
Primary Care Trust (PCT) community health services
General Practitioner (GP) services
Dental/ophthalmic services
Outpatient/hospital services
Voluntary sector services
Social services
He then explained who was responsible for these services using London as a model:
“Patients are the most important people in the health service. It doesn’t always appear that way. Too many patients feel talked at, rather than listened to. This has to change.” NHS Plan, 2000
“There is a legal duty on NHS organisations to involve & consult patients & the public in the planning of services & in decisions about how services operate.” Health & Social Care Act, 2001
Paul then went on to explain the remit of each service or body, acknowledging that some are not yet doing what they were set out to do:
Local NHS
Individual department service user groups and service user representation
HIV service planning group
Voluntary community organisations
Service user forums
Advisory mechanisms
Satisfaction survey work
Patient Advice and Liaison Services
Resolve immediate problems
Provide information
Help people access complaints
Patient Forums
Monitor and inspect NHS services
Produce an annual report
Refer issues onwards
Monitor PALS Services
Promote public involvement in health decision making (PCT only)
Overview and scrutiny committees
Review and scrutinise all matters re: planning and provision of health services
Make reports and recommendations
Require NHS to give them information
Have issues referred to them by patient forums
Boards of Governors
Oversee work of Foundation Trusts
Oversee plans of Foundation Trusts
Reflect local community interests
Taking it further
Independent Complaints Advocacy Service (ICAS)
Complaints – Trusts, PCTs, SHAs
Complaints – professional bodies
Getting involved
Make your views known
Raise issues with PALS
Check out local NHS and voluntary organisation arrangements
Patient Forum membership
Stand for election to Foundation Trust Board of Governors
Ann Priddey and Janice Fox gave participants their experience of PPI Forums so far. The Forums have legal powers and have a minimum of seven members. Training and support is provided to members. PPI Forums are currently doing the following:
Setting up a work programme
National consultations
Joint work
Janice encouraged participants to get involved by becoming members of their local PPI Forum to raise issues around HIV and sexual health.
As part of NAT ’s PPI Project, three regional seminars of people living with HIV were held leading up to the conference. Three people volunteered to give some feedback from these seminars. Teresa Wotta Logg began by outlining what people living with HIV think involvement is and shared some of her experiences with the audience.
Involvement is…
Self-advocacy
Taking personal responsibility
Two-way communication
Becoming an ‘Expert Patient’
Taking part in research
Advocacy for others
Having a voice
Active participation
Being consulted
Actively sharing knowledge
Taking part
Ongoing
A way to network
Supportive
An investment
Making a difference
DOING SOMETHING
Colin Capner went on to outline what people with HIV who attended the seminars thought were the reasons why involvement is important.
Involvement is important to…
Build confidence
Reduce stigma and isolation
Make well-informed decisions
Let others know what you think
Look after yourself
Help others
Give constructive feedback
Respond to needs
Make a contribution
Raise awareness
Improve services
Highlight and address anomalies
Ensure accountability
Raise standards
Influence local and national service providers
DO SOMETHING
The final presentation from the seminars included some inspiring personal experiences from Paul Attinello. As a Canadian living in the UK he highlighted the fact that it was often a very ‘British’ thing to complain when something wasn’t right but not actually ask for what was needed. He outlined what people living with HIV who attended the seminars said about what makes involvement work well.
This makes it work well…
People
Frank and open communication
Commitment
Diversity
Getting together
Technology (email, internet, conference calling etc)
Engagement throughout the process
Money and/or incentives
Support from service providers
Flexibility of meeting times and childcare
Training
Accessible, relevant information (no jargon)
Realism
Publicised results
All views listened to and acted upon
DOING SOMETHING
An example of a ‘ Virtuous circle’ of involvement was also presented. This was a completed feedback loop to people giving them information. Colin explained this as a proposal from caregivers, then listening to the response from clients. Paul said that in Newcastle the relationship is in reverse but it still ends up in a circle.
Move on to Bloomsbury Patient Network