Supplementary evidence submitted by the
NHS Alliance (PPI 81A)
EXAMPLES OF COMMUNITY DEVELOPMENT—PPI
AND HEALTH GAIN
INTRODUCTION
Community Development (CD) can be defined as
follows:
Community Development is about building active
and sustainable communities based on social justice and mutual
respect. It is about changing power structures to remove the barriers
that prevent people from participating in the issues that affect
their lives. (WHO definition)
CD can offer two important benefits at the same
time:
— Health gain through developing social
networks which are known to be health promoting.
— Engaging local populations which
can lead to effective PPI.
The structure of PPI in the NHS is under consideration
at the moment by the Expert Panel. We hope that it will not result
exclusively in more committees that are difficult for lay people
to attend, participate in and understand. We hope that it will
result in a more organic approach that harnesses community development
(perhaps not using that term) to bring people together, gather
views and make changes.
A POSSIBLE STRUCTURE
The sort of structure that the NHS Alliance
is promoting is a CD presence in each neighbourhood of the PCT,
aligned with the PBC commissioning groups. The process is two-way:
the CD workers gather views from local people on issues that matter
to them (in Lewisham's experience, for instance, issues of young
people's health, the housebound elderly, poor care for elderly
people in the local hospital). At the same time, the PCT and/or
commissioning groups ask the CD workers to investigate issues
that matter to them (what do diabetics want from commissioners,
what do local people want from the new LIFT scheme, what do cardiac
patients feel about care in Lewisham Hospital).
Meanwhile, the CD workers respond to some of
these issues with direct action themselves, organising youth work
activities, lobbying for new posts to respond to need, or putting
feedback from local people to key decision-making arenas such
as PBC commissioning groups and/or PEC and Board.
This organic approach seems to have been working
well for some years. There are three main examples where a generic
CD organisation, linked closely with PCTs but governed separately,
has managed a diverse range of activities all supporting CD, PPI
and challenging inequality. They are:
— Lewisham Community Development Partnership,
— Social Action for Health in the East
End of London, and
— the resource centre in Newcastle.
AN EXAMPLE
OF A
GENERIC COMMUNITY
DEVELOPMENT ORGANISATION
AND ITS
OUTPUTS
LCDP began a number of groups in response to
local need, as identified both by outreach work and by formal
questionnaire. As a result, the following activities were begun
in the first couple of years:
— a women's group and a mother and
toddlers group;
— a group for weight loss that focused
on the psychological forces on women;
— the development of an acupuncture
and osteopathy service—this was one of the first in the
country and became mainstreamed by the then Health Authority;
— a summer playscheme that has run
for many years;
— work with the Borough to:
— add a zebra crossing at a dangerous
local zone, and
— add a new bus-route to serve
the local estate,
— a change to the practice's ante-natal
services and appointment systems; and
— regular meetings with Lewisham Housing
to improve users' experience of transfer and to educate local
practices in working better with Housing.
The project then began a series of Needs Assessments
from users' points of view. These have had a significant impact
on the Lambeth, Southwark and Lewisham scene:
African-Caribbean Needs Assessment:
— a new community development worker
specially for the needs of this community;
— a focus on the mental health of this
community;
— two intergenerational initiatives:
— a group bringing together older
and young black people,
— a group linking mainly black
adults with young people with the intention of offering support
and guidance to families,
— later work on mental health.
Young People's Needs Assessment was carried
out with the help of the LSL public health department asking young
people what changes would be needed to improve their relationship
with their general practice. This resulted in:
— a new post called a Youth Health
Advisor who carried out the following activities, in response
to the requests expressed by the questionnaire respondents;
— calling up cohorts of young people
in four local practices,
— offering them information in
entertaining ways on the topics of their choice, which usually
centred around puberty, sex, relationships, drugs, and
— offering one-to-one counselling for
young people based in the practices,
— extensive outreach work across LSL,
focusing on issues of sexual health; and
— engaging hundreds of young people
through musical events with a sexual health message.
Needs Assessment of Housebound Elderly consisted
of a interviews with all the housebound elderly of two local contrasting
practices. The issues raised are helping to focus the Lewisham
PCT Older Adults Strategy. They include:
— the loneliness experienced by so
many older people;
— the lack of continuity from their
GP;
— the poor standard of care provided
by Social Services; and
— the lack of practical help where
and when it is needed most.
Needs Assessment of the users of local mental
health services. The outcomes of this have underpinned Lewisham's
response to the NSF for mental health, focusing on:
— issues of race and mental health;
— cultural awareness training for primary
care staff;
— working with the only local users'
forum for mental health;
— creating the understanding that the
basis for developing mental health services should be keeping
people out of hospital; and
— concordance: ensuring that prescribing
is done with the engagement and agreement of the user.
CURRENT ACTIVITY
Now, funded by the PCT and still run by a Management
Committee of local residents, the organisation is Lewisham-wide
and carries out the following activities:
— supporting practices in involving
users, the public and carers;
— developing and sustaining an ICAS;
— ensuring a community development
presence in each neighbourhood;
— helping to develop the Lewisham User
Involvement Strategy, including a strong commitment to community
development;
— supporting a number of Lewisham-wide
initiatives including;
— mental health initiatives supporting
particularly issues of race,
— a support network for young parents
in a local housing estate,
— improving children's and young
people's services on another local estate,
— a number of reminiscence groups,
— work with young people and sexual
health,
— work on an estate which has resulted
in a substantial drop in crime, and
— advice to practices on PPI which
has resulted in a number of patient Participation groups starting
up,
— involvement in a wide range of committees
in the PCT, including developing public involvement in developing
the Local Delivery Plan which sets out the financial map for the
next year; and
— supporting lay involvement in practice-based
commissioning.
EXAMPLES OF
CD PROMOTING HEALTH
GAIN
Healthy Living Centre in Newcastle
The need and the design for this Healthy Living
Centre was identified and by CD. It has a steering committee that
includes local people. It now runs a range of healthy physical
activities, as well as a range of groups that support local needs.
— Classes including dancing and pilates.
— Links with cardiac rehab.
— Groups for people with diabetes.
— Exercise for people with mental health
problems.
— The development of community development
link workers.
Reducing falls in the elderly
The Healthy Communities Collaborative (HCA)
originated from the NHS Plan under the heading "New Partnerships
to Tackle Inequalities". It was led by the National Primary
Care Development Team (NPDT) supported by evidence provided by
the Health Development Agency (HDA).
The aims of the HCC are to:
— Create a template for multi-agency
working.
— Reduce falls in over 65s.
— Remove the barriers which prevent
statutory organisations from engaging with communities.
The successful sites were Gateshead, Easington
and Northampton who were tasked with engaging teams of local older
residents to begin to work on falls prevention.
Team composition across the sites varied with
some teams being 100% local older people and others 50% local
older people. The composition of the teams has an impact on the
successful outcomes of the pilot.
The HCC produced a 32% reduction in falls in
the over 65s in the pilot year, using ambulance or acute trust
data. Another measure used was warden services data and this demonstrated
an even greater reduction in falls.
A transport solution to a health problem
As part of a generic needs assessment on an
estate in SE London, the Lewisham Community Development Partnership
(LCDP) found that local people found that the hilly area caused
a number of difficulties, particularly for people with respiratory
and cardiac problems. The local GPs were aware of this but felt
obliged to treat symptoms with medication. LCDP negotiated with
the Local Authority to reroute a bus to the estate. This enabled
particularly elderly people on the estate to expand their social
life and rely less on medication.
An example of how CD can identify a health solution
by taking a broader view both of the problem and the solution.
Health Guides in East London
Aims of the Health Guides Project
— To establish and support cohorts
of local people to act as health guides within their own community.
— To facilitate own-language access
for excluded people to information and guidance about health services;
to promote understanding and awareness of self care and self management.
— To empower local people so that they
realise their own community-based knowledge and learn how to act
on that.
— To represent the concerns of local
people at decision-making meetings and seek to make services more
responsive.
Outcomes to date
— Around 90 local men and women from
the Bengali, Somali and Turkish/Kurdish communities in Tower Hamlets,
Newham and Hackney have been running sessions in community centres,
schools, mosques and clubs with groups of people from their own
communities.
— By the end of March 2006, 450 sessions
will have been delivered to local people in their mother tongue,
on a targeted basis, with some tutors working with the same group
over a number of sessions to get to grips with a complex range
of issues.
— SAfH feeds issues raised to providers
and commissioners to help ensure services become increasingly
responsive, informing service redesign in heart disease, diabetes,
urgent care services and maternity services. Several Health Guides
have joined the Patient and Public Involvement Panel in Tower
Hamlets which feeds into the work of the PCT and hospital Forums.
— Through the Health Guides project,
we designed a flow chart guide to A&E showing that you might
not need to see a doctor and still get good care. It is now available
at the A&E department in several languages.
— Another issue that has emerged from
the Health Guides sessions with Moslem participants is concern
about the way death is managed by clinicians and hospitals and
coroners. Discussions are beginning with the relevant Coroners
about the requirements for autopsy. Health Guides are in discussion
with the Mosques and the Islamic funeral directors which is going
to lead to a set of guidelines.
— The scale of the Health Guides Initiative
means that they can speak on behalf of many hundreds of people
and the mechanisms used means that they can check back with local
people easily and straightforwardly.
Youth Health Advisor in Lewisham
It was clear to the CD workers in Lewisham that
local youth had little to do and got into trouble. As part of
a summer playscheme set up to improve the situation, young people
were asked their views about local health services for young people.
They told us that school sex and health education
took place too little, too late and was of poor quality. In addition,
they found it difficult to go to the local practice because it
felt too exposing and alien. Initial opinions were confirmed by
a large-scale survey conducted in schools and youth centres by
LCDP in collaboration with Public Health.
Young people recommended that a new post be
created called a Youth Health Advisor. Funding was found for this
post which has now been running for eight years. Among many interventions,
the YHA calls cohorts of kids of a certain age up to the surgery
for meetings where the subjects are set by the young people and
where training is by local youth workers and other relevant experts.
The subjects usually centre on sex, drugs and common health problems
such as obesity and acne.
The YHA now has an international reach. He has
also collaborated on a Patients as Teachers programme for young
people with asthma, helping them to train local practice nurses
and GPs in good practice in asthma care from the users' points
of view.
WHO research
Linking community and psychological empowerment
to health has been difficult. A study in Detroit, however, identified
greater sense of community (the strongest predictor), perceived
neighbourhood control, and neighbourhood participation as independent
predictors of better self reported health and fewer depressive
symptoms (Parker EA et al. Disentangling measures of individual
perceptions of community social dynamics: results of a community
survey. Health Education & Behavior, 2001, 28(4):462-486.)
Only a few published studies were found that
explicitly tested the hypothesis that community participation
in decision-making would show additional benefits in health or
health care. In the late 1980s, a quasi-experimental study on
water supply in Togo and Indonesia including an active participation
group, a top-down intervention group where water systems were
installed without participation, and a control set of villages
(Eng E, Briscoe J, Cunningham A. Participation effect from water
projects on EPI. SocialScience & Medicine, 1990, 30(12):1349-1358.)
found that 25-30% more children were immunized in the villages
with active participation. The study showed that increased community
participation in water projects was correlated with improved child
health strategies. A comparative study of two drinking water supply
and sanitation projects (one with active villager participation
and one without) documented a range of better outcomes in the
active villages: better water quality, higher percentage of people
understanding g the risks and switching to the safe water supply
(40% vs. 25%), better monitoring of tap functioning and maintenance,
better health habits in using latrines and filtering drinking
water and higher levels of satisfaction (75% vs. 30%) (Manikutty
S. Community participation: so what? Evidence from a comparative
study of two rural water supply and sanitation projects in India.
Development Policy Review, 1997, 15(2):115-140.)
In Ghana, a schistosomiasis control programme
compared the provision of chemotherapy with three village conditions
of health education: a participatory action approach, a passive
approach, and no health education. With a baseline showing limited
knowledge of the disease and its prevention in all villages, after
the intervention, the participatory villages more successfully
constructed school pit latrines and weeded the river banks, though
all constructed hand-dug wells (Aryeetey ME et al. Health education
and community participation in the control of urinary schistosomiasis
in Ghana. East African Medical Journal, 1999, 76(6):324-328, Nsowah-Nuamah
NNN et al. Urinary schistosomiasis in southern Ghana: a logistic
regression approach to data from a community-based integrated
control program. American Journal Of Tropical Medicine And Hygiene,
2001, 65(5):484-490).
A quasi-experimental design in Norway with an
empowerment intervention fishing village and three control villages
attributed improvements in cardiovascular risk factors to integrated
involvement of the fishermen within many sectors, such as schools
and worksites, the health care system and local government (Lupton
BS, Fonnebo V, Sogaard AJ. The Finnmark Intervention Study: is
it possible to change CVD risk factors by community-based intervention
in an Arctic village in crisis? Scandinavian Journal of Public
Health, 2003, 31(3):178-186).
In addition to personal patient empowerment,
family empowerment strategies have increased caregiver efficacy,
coping skills and access and effective use of health services.
Family strategies have seen greatest use in mental health (Sherman
MD. The Support and Family Education (SAFE) program: mental health
facts for families. Psychiatric Services, 2003, 54(1):35-37. Dixon
L et al. Pilot study of the effectiveness of the family-to-family
education program. Psychiatric Services, 2001, 52(7):965-967)
including reduced anxiety and depression in caring for chronically
ill children (Melnyk BM et al. Creating opportunities for parent
empowerment program effects on the mental health/coping outcomes
of critically ill young children and their mothers. Pediatrics,
2004, 113(6):e597-607).
Support group interventions with grandparents
and a systematic review of 20 studies of parent training to improve
maternal psychosocial health showed reduced depression, anxiety
and enhanced empowerment (McCallion P, Janicki MP, Kolomer SR.
Controlled evaluation of support groups for grandparent caregivers
of children with developmental disabilities and delays. AmericanJournal
of Mental Retardation, 2004, 09(5):352-361; Barlow JH, Coren E.
Parent training for improving maternal psychosocial health. The
Cochrane Database of Systematic Reviews, 2003, 4(Art.No:CD002020
DOI: 10.1002/14651858. CD002020.pub.2.)).
EXAMPLES OF
CD PROMOTING PATIENT
INVOLVEMENT
Housebound elderly
A survey of the elderly housebound in two practices
by CD workers identified a range of serious problems. Although
discussed in a number of forums across Lewisham, the conclusions
have never seriously been taken up. They resonate with a number
of other studies.
Aims of the needs assessment
(i) To identify the self-assessed health
needs of elderly people who are perceived by two different GP
practices as being housebound.
(ii) To enable:
(a) The two practices to compare the findings
with their own perceptions.
(b) Identify gaps or overlaps in provision.
(c) Judge effectiveness of their existing
services.
(d) Patients' satisfaction to be assessed.
(e) Explore if they need new services.
(f) Predict future needs and for them to
make changes as necessary.
Recommendations
What is working well:
1. The District Nurses are recognised as
offering an excellent service.
2. Relationships with GPs are generally
good, though continuity, when it happens, is warmly welcomed.
3. Lewisham Community Development Partnership
is useful.
Improvements needed:
1. More appropriate assessments tailored to
the individual. This will involve changes in procedures for social
service assessment and > 75 checks.
2. More one to one support. This may be
best provided by voluntary agencies.
3. More regular home visits by the GP. If
practices are unable or unwilling to do this, some compromise
may need to be found. This could be negotiated with the elderly
housebound through LCDP.
4. GP continuity—the same person is
best. In addition every effort should be made to comply with patients'
wishes to see the same doctor on each visit.
5. More practical interventions, particularly
aids and adaptations, should be offered and made available. There
is a need for community projects and health professionals to engage
in community education with the elderly to ensure they know their
rights and are able to articulate their needs.
6. Better liaison between secondary and
primary care on discharge from hospital. Based on results from
the study there are great variations in the quality services after
hospital discharge. The housebound elderly constitute a very visible
and vulnerable population. It is necessary for better planning
and co-ordination between NHS professionals, voluntary organisations
and Social Services for their hospital after-care.
7. Improved reliability from social service
input.
8. More services from social services—provision
is felt to be decreasing.
9. More focus on benefits: this appears
to have a low profile in >75 checks and other assessments.
10. Improved over 75s checks by including
an interest on benefits and aids and adaptations.
11. Doctors should record the living arrangements
of their elderly patients to improve assessment of needs.
12. This study found tangible evidence of
the immense value of informal carers. More resources should be
allocated to their identification, development and support.
13. General Practices should do more to
inform their patients as to the range of services on offer to
the housebound.
14. There is a need for health professionals
to reach out to the community and collaborate with other organisations
with grass-roots contacts. Community development organisations
need to use their knowledge of social interaction and skills in
networking, collective/self help organising to work with the housebound,
carers, families and neighbours. They are also best placed to
engage in social planning to ensure there is greater co-ordination
among the myriad of services that impact on the lives of the housebound.
Youth Advisor work
See above.
Cardiac Discovery Interviews
Carried out by CD workers, the following conclusions
were reached. They are under discussion at the moment.
CHD services in Lewisham
Generally the service is seen as thorough, responsive,
and empowering.
Where there are criticisms these are specific
and could carry specific solutions: ie training in giving stomach
injections; more information as to what to expect from an angioplasty
procedure; more cultural awareness amongst orderly staff.
— Length of time to obtain a range
of tests—a one stop approach is recommended.
— Transfers of care—they need
to be smoother with better information for patients.
— Aftercare knowledge and support—needs
to be improved, with more information for patients.
— Support to ask questions; an understanding
of what might fuel anxieties.
— Clearer written information to take
away and for some people a longer time to explain and reassure
in lay terms.
— Focusing more on the needs of women
whose voices seemed less well heard.
— Focusing more on the needs of the
African-Caribbean population. They seemed less well-informed and
more marginalised.
Developing a patient panel for a practice and
a PBC cluster
LCDP has developed an alternative to Patient
Participation Groups which are thought to carry a risk of institutionalisation
and settling into a set of non-representative members.
The patient panel consists of a representative
group of patients randomly selected. Once they have agreed to
participate, all communication is by mail or email, apart from
one meeting a year, unless more are requested. Either the practice
or the patients can raise issues.
A panel has made decisions for a practice on:
— appointment procedures;
— dealing with non-UK residents; and
— responding to the QOF questionnaire
results.
LCDP is now developing the equivalent approach
to a PBC cluster which will enable rapid dialogue with local people
on key issues.
Brian Fisher
NHS Alliance
March 2007
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