APPENDIX 3
Patient and Public
Involvement in Clinical
Commissioning
Feedback from Seldom Heard Groups
This project was funded by NHS South West London, Wandsworth Borough Team and the
department of Health
November 2011
Community Feedback - The Key Messages
As part of our contribution to the Wandsworth Clinical Commissioning Group’s initiative to
develop a strategy for involving the whole community in the future commissioning and
development of health services, LINk supported a number of groups, who are not always
represented in mainstream consultations, to seek out the views of their members on health
needs and to find out how they would like to be involved in future consultations.
Detailed responses are provided in this report, but, in spite of their differences, key linked
themes emerge from all the groups:

Health care staff and commissioners must be aware of the special needs of
each individual.

Commissioners must expect providers to have inclusive, welcoming, sensitive
and accommodating attitudes to all individuals.

Access is the key problem for marginalised groups which is one important
reason why their health outcomes are poorer.
To address these issues a number of common suggestions emerged about involving
people:

Use community leaders and voluntary organisations to consult people in
community resources where they feel comfortable

Ensure diverse representation on consultative groups (in a way that does not
necessarily require attendance at meetings)

Set up online health groups and forums

Ensure that representatives of diverse groups advise on tender specifications
– especially access

Use representatives of diverse groups to train and advise commissioners and
service providers to raise awareness and change attitudes
2
Community Feedback on Health and
Involvement
Group & who Health Issues
consulted)
Afro Caribbean
community
(New
Testament
Assembly)
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Mental health
(Sound Minds)
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Mental Health
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How to involve
Difficulty in accessing
information.
Over-representation of BME
community in range of
conditions – strokes, diabetes,
sickle cell disease, and mental
illness.
Being treated with respect
and dignity.
Distrust in system.
Big differences between
generations: Older - obesity,
diabetes, heart disease
Younger – drugs, sexually
transmitted diseases, gangs

Poor secondary care
experience
Disproportionately high
number of BME MH patients.
Stigma of mental illness in
community
More emergency support in
community to prevent
admission
GPs & other primary care staff
don’t prioritise MI.
Physical health needs are
often neglected
Generic health staff need MH
training
Upset at loss of resource
centres
Need more support for
housing, training and
employment
Need survey of MH needs
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3
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Use community centres e.g.
Churches as a conduit for
consultation
Identify advocates
Use community, e.g. church
premises to deliver health
services to community.
Actively approach community
for representatives on patient
groups.
Ensure they are included in
specific consultations
Provide invitations and support
to participate in expert patient
groups or hold expert patient
groups in community meeting
places
Establish patient
groups/meetings at ward level
and hospital level for inpatients
Seek views of service users by
visiting resources they use in
the community e.g Sound
Minds, MIND, Family Action etc
Invite onto GP patient groups.
Commissioners must require
mental health care providers to
demonstrate how they involve
users and regularly seek their
feedback about services.
Involve service users in setting
service specifications and
evaluating tenders
Allow time to engage and build
up trust as face to face is most
effective form of
communication.
Provide training, support,
briefing and debriefing to users
Somali
community
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(Somali
Community
Advancement
Organisation)
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Lesbian, gay
and bisexual
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(Lesbian Gay and
Bisexual Group)
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Asian
communities

(Wandsworth
Community
Empowerment

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Lack of information eg cancer
High incidence of TB –how to
monitor treatment?
Difficulty of access,
particularly for women
Overcrowding, 50%
unemployment
Stigma of mental illness
Use of khat –symptoms of
paranoia
Language barrier – use of
young family members as
translators causes confusion,
nearest Somali-speaking GP is
in East London
Cultural isolation – expect
doctors to give medicine.
Maternity services –
awareness of genital
mutilation
Some people avoid seeking
healthcare because they fear
discrimination and are
uncertain about disclosing
sexuality.
HIV/AIDS – health information
still required
‘Next of kin’ issues in terminal
care.
Confidentiality assurances
needed to overcome distrust
Sexual orientation in medical
records?
Higher risk of depression and
suicide.
Hard to find way around
system.

High rate of smoking - risk of
lung cancer and respiratory
diseases
Higher risk of acute glaucoma
and chronic kidney disease
Shortage of organ donors
4
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who participate.
Make more trained interpreters
available and make information
accessible in different
languages
Involve community
representatives to overcome
mistrust of users and to act as
intermediaries. Many do not
register with GP because do
not want to reveal address
Offer opportunities for women
only meetings/consultations
Awareness training to ensure
that Healthcare staff do not
assume a patient’s sexual
orientation.
GP surgeries/clinics publicity
material to reflect this user
group esp transgender.
Need for AIDs awareness
campaign.
Train carers on LGBT issues.

This group would respond well
to being consulted
electronically.

Possibly set up an on line forum
where health issues could be
discussed and consulted on.

Active members of local
communities to act as
intermediaries and be invited
to represent their communities
on patient groups,
consultations and developing
Network)
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Asian groups
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Neurological
Conditions
(Wandsworth
Neurological
Conditions
Group)
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Higher blood pressure
More coronary heart disease.
Domestic violence and abuse
among Asian women
Psychological abuse
Importance of privacy and
confidentiality
Women want treatment by
female health professionals
Difficulty of getting diagnosis
– especially for ME and rare
conditions. Delay in getting
referral to specialist units
ME patients still find difficulty
getting their condition
recognised and treated
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Health professionals to link into
community and faith groups,
be prepared to deliver services
in settings where communities
feel comfortable.

Encourage GP champions for
neuro conditions
Establish accessible borough
wide neurological network via
GP clinicians, patients and
carers forum
St Georges to declare
neurological diseases a local
priority
Consider establishing a ‘virtual
ward’
Consult via the existing expert
patients group
Signposting using expert
patients
information and publicity
material in out-patients waiting
area
Specific requirements for
disabled access in
commissioning plans
Use disabled people in
preparation of specifications
and in looking at tenders.
Use disabled people to train
professionals and advise
commissioners.
Some disabled people may
respond to electronic
consultations, others may need
to be visited in the resources
and meeting places they use
Use GP surgery as hub with
carers lead
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Disabled
Groups
(Wandsworth
Independent
Living Forum
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Confusion over use of
personal budgets to buy care
Appointments system and
difficulty of getting home
visits
Disabled access in clinics eg
wheelchair transfers
Not being treated with dignity
and respect
Disabled car parking often not
available near health
resources
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Carers
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Standards of care for older
people, availability of drugs
5
contract specifications.
Professionals who speak
language
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(Wandsworth
Carer’s Centre)
Carers
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Visually
Impaired
(Thomas
Pocklington
Trust)
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required
Lack of adequate information
Not being listened to
Carers physical and mental
health needs neglected.
Travel to hospital, waiting
times
Carers’ expertise in their
relative’s health condition not
recognised
Overlooking young carers
‘Consultation fatigue’

Inaccessible appointment
letters
Visual signboards in GP
practices
Medication dosage
instructions
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Elderly
(Putney Vale
Residents Assn,
Roehampton
Trust)
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GP appointment system –
can’t get through, hard to
make advance appointments.
Access: getting to surgeries by
public transport/lack of
nearby parking/steps.
Getting to hospital out
patients also really hard
Long waits for transport
Very expensive parking costs
for someone who takes you
Long waits in out patients very
stressful and uncomfortable
for elderly person
6
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Compulsory register of carers.
Meeting room for carers’
support
Better signposting of
advice/information
Carers to be involved in training
primary health staff.
Carers could contribute to
specifications and look at
tenders.
Carers should be represented
on all patient groups
Carers might also use electronic
communication eg virtual
networking as it is hard for
them to attend meetings.
Healthcare staff to offer
information, guidance on
facilities available in waiting
areas eg toilets, drinks.
Escorts to be available for
hospital clinics
Offer appointments in
accessible form eg phone.
Visually impaired people should
be consulted about accessibility
issues through groups that they
attend
Advance appointments to be
available at GP surgeries
Regular clinics on estates
Home visits for older patients
Staff training in dealing with
elderly (eg.impaired hearing,
sight and mobility).

Older people make up a large
proportion of those using the
health service so they must be
consulted.

Older people have many
informal meeting places across
the borough and they should
be consulted about how to
make services more accessible
and user friendly.
Deaf
community
(Deaf Access
Group)
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People with
Learning
Disabilities
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(Generate
Opportunities
& Wandsworth
Health Action
Group)
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Too many different and
outdated communication
systems
Without proper
communications deaf cannot
access health services
Lack of interpreters in
emergency services
Lengthy waiting times in GP
surgeries and hospitals
Medical staff using long or
technical words
Hospital food – can’t read
menus
Staff not taking enough time
to communicate effectively
with patients
People with LD can miss out
on public health campaigns
and on screening
opportunities.
The health needs of people
with LD can be missed or
inadequately met
7
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Common policy of updating
communication arrangements
eg. Loops, online interpreting.
Relevant agencies to coordinate and oversee services
and pool information on
council/NHS websites
Enhanced awareness training
for primary care staff provided
by and with deaf people
themselves.
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Deaf people could be consulted
on line and have an online
forum about health care
services
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There are a number of
organizations in Wandsworth
that care for and represent the
needs of people with LD and
there are people with LD able
to speak for themselves.
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Public health information
needs to be provided in Easy
Read format.
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Systems need to be established
to tap into the expertise of
these individuals and inform
the design of services.
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Following consultation
commissioners need to specify
approaches that will ensure
that people with LD are fully
catered for in all contracts and
specifications.
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People with LD and their
advocates can be invited to
train and advise staff.
Asylum Seekers
(NHS Health
Team for
Homeless,
Refugees and
Asylumseekers)
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Hard to find and access eg
do not respond to letters team knock on doors and
visit hostels
3 main groups in
Wandsworth – Somalis,
Ahmedis (Pakistan), and
Iranians
Lack of information on
how to access health or
social services support
Trauma – physical and
mental – many tortured
Acute housing issues –
many awaiting
dispersal/deportation
Language problems inappropriate use of
children as translators
Very few GPs focus on this
group
8
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Awareness training of
medical staff and
Commissioners of health
needs of this group
A&E staff need to be able to
use Language Line to access
translator services
Improve liaison between
HRA Health Team,
Commissioners and social
services. GP lead to
oversee