Mechanisms for patient and public engagement and involvement within the transitional structures
Chapter 5 Research findings: case study 2 Background
Case study 2 was the second site to be recruited. Merged from four separate health organisations in 2006, CS2 had a long-standing tradition of patient involvement and public engagement, with a PPI strategy that focused on partnership working and active involvement.
Case study setting
Case study 2 is situated in an inner-city area in the north of England. It is culturally diverse, with a growing BME population. Life expectancy is marginally below the national average and the site reflected high levels of health inequalities, with areas and pockets of deprivation. Differences between life expectancy between the best-off and worst-off neighbourhoods was marked (around 14 years in 2008) and prevalence of chronic diseases showed a consistent and high relationship with indicators of deprivation at ward level. CS2 commissions services from a variety of providers, including acute, community services and specialist hospitals. Primary care is provided through 88 general practices, forming four locality-based, practice-based, commissioning groups.
Processes and supporting structures for patient and
public involvement
Public and patient engagement and involvement appeared well established in CS2, primarily through
CS2’s relationship with the local authority. The city council was an active partner in health and social care,
with an established track record in community development, as well as increasing public involvement via community assemblies. The voluntary sector was highly developed, with over 150 charities and voluntary organisations operational. PPEI structures, such as a third sector assembly, brought together voluntary and community organisations, faith groups and social enterprise organisations with statutory services.
The first workshop identified various PPI initiatives that were operating within the case study site. Significantly, participants found the information exchange informative, and discussion identified that many of the initiatives were not adequately or widely communicated. Sharing information was seen as essential (Table 8).
Interviews, discussions and documentary analysis showed a diversity of methods utilised within the case
study site in relation to PPEI (2010–13) (Table 9). The development of PPGs was evident at practice level.
Patient participation group recruitment was often via invitation, and involvement covered areas such as practice environment, patient education and self-help, advocating access to services and involvement in
public events. Lay representation was identified in a number of working groups– this included areas such
as Partnership for Mental Health, Health Panels, commissioning/public/multidisciplinary meetings and virtual groups. A focus group with local National Rheumatoid Arthritis Society (NRAS) members identified the use of the press as a way of making their views heard.
Some of the examples focused on information exchange, with a strong emphasis on feedback. Data collection tools such as survey, questionnaire and comment boxes were highlighted as well as a number of public consultation events. Newsletters and practice leaflets were also identified, as well as the use of consortium websites, with strong emphasis on providing patient information but also offering ways to
become involved. Discussion with LINk representatives highlighted the use of‘enter and view’ at hospitals
and GP surgeries. There was PCT involvement (PPEI team) in citywide PPEI networks and expert patient programme groups; in relation to tracer conditions, there were a number of consortia-led groups such as diabetes planning and commissioning group/long-term neurological conditions forum.
A diabetes support group had been involved in service redesign and had the ability to work independently of the practice, setting its own agenda and offering support and social networking. Patients were also acting as champions at practice level, which involved supporting other patients and helping them to access appropriate services. Patient involvement in educational programmes such as DESMOND
(Diabetes Education and Self-Management for Ongoing and Newly Diagnosed) had also led to increased involvement, for example in changes made to adolescent services. In addition, there were some examples where voluntary groups had been asked to run public consultation events; for example, the Royal National Institute for Deaf People (RNID, now known as Action on Hearing Loss) was involved with hearing aid
TABLE 8 Patient and public involvement structures in CS2 PPI structures PPI activities
Organisational-led structures
Expert patient programme
Quality Improvement Academy– led by PCT chief executive, attended by LINk and service users, focus on care pathways
Readers Panel
Health Inspectors– young people (11–19 group) inspecting children services re: fit for purpose Patient Involvement in redesign of hospital car park
Lay involvement in steering groups
Patient stories
Big Health Conversation– public consultation for JSNA Shadow Board for Coronary Heart Disease
PPI projects Experience-based design– the collection of real-time data focusing on how patients are feeling at each stage of pathway
Person-centred planning– patient redesigned care pathway transition from child to adult learning disabilities services, results identified reduction in hospital admissions and healthier lifestyle Service user-led
PPI structures
LINks
Local voluntary action groups
NRAS– directly approaching general practices to raise issues NRAS, National Rheumatoid Arthritis Society.
services redesign. In relation to tracer conditions, PPEI was evident in the redevelopment of musculoskeletal services, with the PCT instigating a number of service provision reviews focusing on physiotherapy,
podiatry and chronic pain services. PPEI focused strongly on consultation, with the predominant use of questionnaire and survey. Although there was a Long-term Neurological Conditions forum, with patient and public representation, documentary analysis revealed no evidence in relation to the impact of the forum.
Assessment of methods and approaches of PPI reviewed within the case study site (see Table 9) highlighted a continuing focus on commissioner-led initiatives, with fewer examples of participatory involvement. This would suggest that overall control of the agenda had rested within the PCT itself.
TABLE 9 Methods of involvement: CS2
Method of involvement Used or led by Level of involvement
Lobbying local press Service users Information exchange Lay representation on health panels/forum Commissioner
Consortia
Information exchange
Feedback
Patients as champions Patients Participatory
Lay representation in commissioning meetings Commissioner Information exchange
Feedback
Lay representation in working groups Commissioner Information exchange
Feedback Voluntary organisations facilitating public engagement events Service user representatives Participatory
Consultative
PPGs Initiated by practice personnel
User led
Participatory
Practice leaflets/letters Provider Information giving
Diabetes support group User led Participatory
Consortium/practice website Provider Information giving
Feedback
Comment box Provider Feedback
Lay representation in public meetings Commissioner Information exchange
Involvement network Commissioner/patients Participatory
Enter and view visits User led Feedback
Press releases Commissioner Information giving
Graffiti wall Commissioner Feedback
Public consultation exercises Commissioner Consultative Questionnaire– patient satisfaction Commissioner/provider Feedback
Lay representation in forums Commissioner/local authority Information exchange