Chairs: Dr Simon Barton, Chelsea and Westminster Hospital, Robert James, Birchgrove Group
Speaker: Hong Tan, London Specialised Commissioning Group (LSCG)
Facilitators: Paul Clift, Thandi Haruperi, UKC, Ian Hayes, Deborah Jack, NAT, Tom Matthews, NLTSG, Neo Moepi, Beatrice Nabulya, Hong Tan
Rapporteur: Robert James
This workshop was attended by 70 people.The session began with a presentation from Hong Tan. He highlighted the importance and need for patient involvement in HIV commissioning and the successes the LSCG had in involving people and organisations. Hong also presented the Living Well Model for HIV services:
Expert patients are informed, trained and supported to be more involved in their healthcare i.e. to live well.
Expert communities where expert patients are supported to develop new skills including how they can feedback into planning and other groups.
Expert staff involved in delivering and commissioning services are trained to engage with expert patients and communities. This will support patients and communities being able to influence service commissioning, development and delivery more effectively.
The participants were then divided into five groups facilitated by one or two people. The groups were asked to come up with a list of things that help individuals become more involved in their care. This was to be either their own individual care, the care for people with HIV in their clinic or patient involvement in their area.
After this each group was asked to select the three most important points and present them back to the whole group. Most groups presented back four or five things and many were repeated in each group. Those in bold were fed back to the whole group.
Group 1
More time
More info about structures/opportunities for involvement
Support from self-help groups
More transparency (how work, how financed, how involved)
Making structures user-friendly
Getting rid of barriers - (time, money, jargon, language, location, etc)
Making people feel they've got something valuable to say
Giving people skills - training
Bringing people together - e.g. non HIV
Better HIV education for staff
Having a social worker
Service providers reaching out to positive people
Better 2 way information
People being aware of MedFASH standards of care they should expect
Local information and contacts
NHS has to convince people it has changed - give practical examples - outside London!
Group 2
Know you are being listened to
Where to go
Infrastructure clearly identified
Active participation of people living with HIV who are also working in the field
Knowing and believing that all personal effort is worth it - NO TOKENISM
Welcome ALL views of participation - regardless of status/ sexuality/ ethnicity/ faith etc.
Use VCOs to offer support/ structure for patient representatives
Action to be seen
Group 3
‘Certain stroppiness’ from individuals with ‘willing ears’ to hear the voices and action
Direct involvement from patient to clinician/ providers
Ensure mechanisms are in place for more ‘silent’ majority to be heard
Build community capacity & skills for people affected and ensure their participation
Transparent & clear information on & about infrastructures so people know who to go to & where e.g. PPI
Group 4
Lots of money (it’s a motivator and a way of valuing contribution)
Understanding how
Basic communication from hospital
Knowing the system
Information to attract me
Info for choice
Background info
A system that uses patient input positively
Not feeling a token
Publicising PPI successes
Lack of a specific PPI target for HIV
Feeling I could make a difference
Knowing I could make a difference and knowing how to
More info to facilitate real choice
Understanding the system
A realism in our agenda
Mutual honesty
Group 5
Time
Information
Motivation e.g. Conference
Confidence
Examples of involvement that work
Resources, e.g. childcare
Benefits and outcomes of involvement
Training - skills development
The things judged the most important to help people become involved from the discussions arising about the feedback were:
Knowing that it makes a difference
Confidence that input will be taken seriously, results can be felt by patients and feedback should always be given to the individuals involved. The value of the presentation by the Bloomsbury Patient Group was frequently cited as helpful in building others confidence to become involved.
Resources, but usually time and NOT money
Money was always helpful but time and expertise were more important; the time of senior people in order to influence things; expertise and knowledge of the NHS, local authority and voluntary groups systems, structures and processes.
Why can't things just happen?
A desire to understand the issues for commissioners, managers, patient-seeing staff and not just other patient’s issues.
A 'no blame culture' for patients too
That input would not be received defensively or presumed to be criticism and lead to different treatment of those that provided feedback. This means not punishing those that make negative comments or suggest changes. (A 'no blame culture' is expected of NHS organisations in order to promote whistle blowing and help reporting mistakes and serious incidents).
Early involvement
A strong plea to be involved at the 'we have a problem, what should we do?' stage as well as the 'we have a solution, what do you think of it?' stage (involvement, not just consultation). There was a suggestion of a target for PPI in HIV and Simon Barton asked if anyone had considered what it might be. The only target suggested was from Robert James of one where he worked of identifying a service change made because of patient input.
Direct involvement means from patient to clinician and/or providers(rather than involvement of organisations to facilitate this which may be seen as ‘muscling in’ on an exercise that works best when patients and clinicians meet face to face)
It is essential to publicise successful outcomes of patient involvement to demonstrate that involved patient interventions are productive
Involvement should be part of the whole process (from service planning through service development to service implementation and ongoing monitoring)
Build community capacity and skills for people affected and ensure their participation
Develop and establish consultation mechanisms for the ‘silent majority’ to be heard (establish consultation mechanisms with which patients can engage if/when they wish)
Providers should produce more and clearer information about infrastructuresso people know where to target/direct their involvement for it to be useful, effective etc.
This workshop was evaluated by 38 people. There was a wide age range, the youngest participant being 24 and oldest 63. The average age was 43.
Gender
20 male, 13 female, 5 not stated
Ethnicity
14 black African, 17 white, 6 not stated, 1 other non-white
Sexuality
18 heterosexual, 13 gay, 6 not stated, 1 bisexual
Usefulness
Very useful |
Useful |
Not useful |
63%(24) |
37% (14) |
0% (0) |
NOBODY said not useful
18 people set themselves action points:
Getting involved locally (39%)
Draw on Hong Tan's model to advocate locally
Try to improve local PPI representation
Seek info on local general patient forum
Representation on behalf of others (33%)
Go and represent newly diagnosed people
Continue advocating for patient representation in Scotland
I will become a patient representative!
Personal action/confidence (28%)
Take more interest in my hospital
Consider getting involved
Make sure I am fully informed
Move on to Treatment Issues For Dinsoaurs