Transcript WHY USER INVOLVEMENT

Putting It On The Agenda
Service Users Issues
Pathways to Treatment and Care Conference
Stirling Royal Infirmary
30th September 2004
David Pentland – Peter Anderson
Introductions
Peter Anderson
David Pentland
Objectives
Look at users experiences
Describe our use of focus groups
Look at the pitfalls of the consultation
Raise awareness of our findings
Share our experiences
My history of user involvement
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H.U.G.E.
Groundswell U.K.
H.O.P.
S.D.F.
WHY USER INVOLVEMENT?
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Making clients feel valued and that
they have valid opinions.
Helping clients build there own
interpersonal communication skills
Making services reactive to the
individual needs of the client group (
as apposed to the perceived needs).
Viewing clients as part of the
solution instead of part of the
problem.
Philosophy of involvement
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Not using clients in a tokenistic
fashion.
Supporting clients throughout the
process and making sure they don’t
get held back in there own
development and rehabilitation.
Always feeding back on positive
outcomes.
Making sure that what is being
constructed is realistic.
Problems encountered in the focus
groups
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Expectations of the individual participants.
Having to learn as we went along.
Size of groups.
Involving the less vocal members of the
groups.
Having at times to pull the focus Back into
the remit of the focus group
Keeping order within the group without
being seen as the bad guy
What next?
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Presenting the findings of the report
to the Lothian D.A.T.’s
Supporting a variety of user groups
to organise a speak out
Providing training to the voluntary
sector on user involvement
Hopefully a sustainable user group
that can be representative of the
homeless/drugs service user needs.
Future Events
SCSH In partnership with Groundswell
Setting up and Supporting a User Group
Edinburgh
Friday 3rd December
Mike Seal & David Pentland
Background
SDF commissioned by NHS Lothian
to undertake a consultation across
the Lothian area with drug service
users.
Background (Cont’d)
The objective of the study was to
ascertain the views and experiences
of drug service users in relation to
current drugs services in both
geographical and thematic contexts
Background
This objective was met through
creating a series of core questions
which would be offered for discussion
to a range of focus groups
Core Questions
Accessibility of drug services
Barriers to seeking help
Experience of GP and shared care
provision
Behaviour in respect of blood borne
viruses
Suggestions for improved service
provision
The groups
Each of the focus groups, whether
geographic or thematic, covered
these issues. In addition, the
thematic groups dealt with specific
issues affecting the particular group
[e.g. homelessness]
Method
This was a qualitative exercise based
on the transcription and analysis of
seven focus groups
Impartial Facilitator
Geographical
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The focus groups covered the four
Lothian Drug and Alcohol Action
Teams’ areas of
Midlothian
East Lothian
West Lothian
Edinburgh
Thematic
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The thematic groups consisted of
Homeless people
Women
Young People
Stable Drug Users
In total forty-one people participated in the
focus groups between September 2003 and
March200 4- the focus groups consisted of
between three and twelve participants and were
facilitated by SDF volunteer and staff. A
representative from Lothian Health Board
participated in three of the focus groups. Each
focus group was recorded, transcribed
verbatim and analysed by SDF’s research
officer.
Agency Support
Good from supporting agencies
Feelings…..
Women’s Focus Group:
Brenda House, Edinburgh
Brenda House provides residential
rehabilitation services including
detoxification, support and aftercare
for women with children under the
age of 12 and pregnant women
Homeless Outreach Project
Two focus groups were conducted at
the Homeless Outreach Project in
Edinburgh’s Cowgate area. The focus
groups included both drug and
alcohol users
Young People
Rock Trust, Edinburgh
The Rock Trust offers support to
young people aged between 16 and
25 years of age. The focus group
took place at the Rock Trust drop-in
on Albany Street, Edinburgh
Mid and East Lothian
MELD
The focus group was conducted in
Prestonpans and included service
users from Mid and East Lothian
attending MELD. MELD is a
community based drug service
offering a range of services for drug
users, their families and friends
West Lothian
The West Lothian focus group took
place at Strathbrock Partnership
Centre
Moving On
Chrysalis Project, Edinburgh (Turning
Point Scotland)
The Chrysalis Project provides a structured
12 week day programme for drug users
who wish to address their offending
behaviour, employability issues and
relapse prevention. The project is
designed essentially for stable drug users
who are at the stage of considering how
best to address their future in terms of
moving on from drug use
Findings
Access to drug services
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Difficult for a number of participants
and for a variety of reasons
Waiting times – Although DAAT
monitoring and TAPS now in-situ
Access to services should be
provided at the time of need
Access to services (Cont’d)
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Information on the available services
Details on waiting times in respect of
access
Service providers’ attitudes being
crucial in seeking help
View that access to services was
inequitable
Service users experience of care
provision
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Views on the provision of drug
services was varied.
Younger service users were more
informed about the range of services
available and provided a more
positive response to the treatment
and support they had received than
other focus group participants.
Service users experience of care
provision
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The experiences and views of the
homeless focus group participants
was perhaps the most pessimistic.
A clear view that homeless services
required improvement in
coordination
Extend/abolish time limited stays in
hostel accommodation
Service users experience of care
provision Service users
experience of care provision
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Rehabilitation services were said to
be lacking in the Lothian area.
Participants in all the focus groups
reported the need for a range of
rehabilitation services to be provided
locally
Service users experience of care
provision
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Lack of residential rehabilitation units
for women with children
Detoxification units, residential
rehabilitation services and relapse
prevention support in need of
considerable improvement/expansion
In addition aftercare/moving on
support services gap in provision
Service users experience of care
provision
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Child care was an important issue for a
number of female drug users.
In all the focus groups staff attitudes were
seen as crucially important
Low self esteem and identifying oneself as
a member of a marginalised group
increases drug users’ feelings of
powerlessness and marginalisation.
Unfortunately this was reported as being
reinforced by inappropriate staff attitudes
Service users experience of care
provision
Regarding staff attitudes there was a
clear view that if the relationship
between the client and the drugs
worker was well grounded then
recovery was more likely
Blood borne viruses
The focus groups highlighted a
worrying gap in blood borne virus
information and service provision.
The key findings relating to blood
borne viruses were
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Limited knowledge and information about the
risks from Hepatitis B & C across all the focus
groups.
Limited take-up of vaccination programmes. Of
the minority who had received a Hepatitis B
vaccination, a significant number had not
completed the full course of vaccinations and had
not been followed up with a booster
Long waiting times may exacerbate risky
injecting behaviour which may lead to increased
transmission of blood borne viruses.
Some Quotes…
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“Counsellors look down on you”
“Things change so quickly don’t
they? You can be really motivated
one day and the situation changes
and you say fuck it.”
Some Quotes…
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“I had four GP surgeries refuse to
take me on because I was a drug
addict”
“Can you get it drinking out a bottle
if someone’s got it?”
What’s the point of being there for
eight to ten weeks and being back on
the street?