Putting It On The AgendaPutting It On The Agenda

Service Users IssuesService Users Issues

Pathways to Treatment and Care ConferencePathways to Treatment and Care Conference

Stirling Royal InfirmaryStirling Royal Infirmary

3030thth September 2004 September 2004

David Pentland – Peter AndersonDavid Pentland – Peter Anderson

IntroductionsIntroductions

Peter AndersonPeter Anderson

David PentlandDavid Pentland

ObjectivesObjectives

Look at users experiencesLook at users experiences

Describe our use of focus groupsDescribe our use of focus groups

Look at the pitfalls of the consultationLook at the pitfalls of the consultation

Raise awareness of our findingsRaise awareness of our findings

Share our experiencesShare our experiences

My history of user involvementMy history of user involvement

H.U.G.E. H.U.G.E. Groundswell U.K.Groundswell U.K. H.O.P.H.O.P. S.D.F.S.D.F.

WHY USER INVOLVEMENT? WHY USER INVOLVEMENT?

Making clients feel valued and that Making clients feel valued and that they have valid opinions.they have valid opinions.

Helping clients build there own Helping clients build there own interpersonal communication skillsinterpersonal communication skills

Making services reactive to the Making services reactive to the individual needs of the client group individual needs of the client group ( as apposed to the perceived needs).( as apposed to the perceived needs).

Viewing clients as part of the solution Viewing clients as part of the solution instead of part of the problem.instead of part of the problem.

Philosophy of involvementPhilosophy of involvement

Not using clients in a tokenistic fashion.Not using clients in a tokenistic fashion. Supporting clients throughout the Supporting clients throughout the

process and making sure they don’t get process and making sure they don’t get held back in there own development held back in there own development and rehabilitation.and rehabilitation.

Always feeding back on positive Always feeding back on positive outcomes.outcomes.

Making sure that what is being Making sure that what is being constructed is realistic. constructed is realistic.

Problems encountered in the focus Problems encountered in the focus groupsgroups

Expectations of the individual participants.Expectations of the individual participants. Having to learn as we went along.Having to learn as we went along. Size of groups.Size of groups. Involving the less vocal members of the Involving the less vocal members of the

groups.groups. Having at times to pull the focus Back into Having at times to pull the focus Back into

the remit of the focus groupthe remit of the focus group Keeping order within the group without Keeping order within the group without

being seen as the bad guybeing seen as the bad guy

What next?What next?

Presenting the findings of the report Presenting the findings of the report to the Lothian D.A.T.’sto the Lothian D.A.T.’s

Supporting a variety of user groups Supporting a variety of user groups to organise a speak outto organise a speak out

Providing training to the voluntary Providing training to the voluntary sector on user involvementsector on user involvement

Hopefully a sustainable user group Hopefully a sustainable user group that can be representative of the that can be representative of the homeless/drugs service user needs.homeless/drugs service user needs.

Future EventsFuture Events

SCSH In partnership with Groundswell SCSH In partnership with Groundswell

Setting up and Supporting a User Group Setting up and Supporting a User Group

EdinburghEdinburgh

Friday 3rd DecemberFriday 3rd December

Mike Seal & David PentlandMike Seal & David Pentland

BackgroundBackground

SDF commissioned by NHS Lothian SDF commissioned by NHS Lothian to undertake a consultation across to undertake a consultation across the Lothian area with drug service the Lothian area with drug service users.users.

Background (Cont’d)Background (Cont’d)

The objective of the study was to The objective of the study was to ascertain the views and experiences ascertain the views and experiences of drug service users in relation to of drug service users in relation to current drugs services in both current drugs services in both geographical and thematic contextsgeographical and thematic contexts

BackgroundBackground

This objective was met through This objective was met through creating a series of core questions creating a series of core questions

which would be offered for discussion which would be offered for discussion to a range of focus groupsto a range of focus groups

Core QuestionsCore Questions

Accessibility of drug servicesAccessibility of drug services

Barriers to seeking helpBarriers to seeking help

Experience of GP and shared care Experience of GP and shared care provisionprovision

Behaviour in respect of blood borne Behaviour in respect of blood borne virusesviruses

Suggestions for improved service Suggestions for improved service provisionprovision

The groupsThe groups

Each of the focus groups, whether Each of the focus groups, whether geographic or thematic, covered geographic or thematic, covered

these issues. In addition, the these issues. In addition, the thematic groups dealt with specific thematic groups dealt with specific issues affecting the particular group issues affecting the particular group

[e.g. homelessness][e.g. homelessness]

MethodMethod

This was a qualitative exercise based This was a qualitative exercise based on the transcription and analysis of on the transcription and analysis of seven focus groupsseven focus groups

Impartial Facilitator Impartial Facilitator

GeographicalGeographical

The focus groups covered the four The focus groups covered the four Lothian Drug and Alcohol Action Lothian Drug and Alcohol Action Teams’ areas ofTeams’ areas of

MidlothianMidlothian East LothianEast Lothian West LothianWest Lothian EdinburghEdinburgh

ThematicThematic

The thematic groups consisted ofThe thematic groups consisted of Homeless peopleHomeless people WomenWomen Young PeopleYoung People Stable Drug UsersStable 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 werefacilitated 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 SupportAgency Support

Good from supporting agenciesGood from supporting agencies

Feelings…..Feelings…..

Women’s Focus Group:Women’s Focus Group:

Brenda House, EdinburghBrenda House, Edinburgh

Brenda House provides residential Brenda House provides residential rehabilitation services including rehabilitation services including

detoxification, support and aftercare detoxification, support and aftercare for women with children under the for women with children under the

age of 12 and pregnant womenage of 12 and pregnant women

Homeless Outreach ProjectHomeless Outreach Project

Two focus groups were conducted at Two focus groups were conducted at the Homeless Outreach Project in the Homeless Outreach Project in

Edinburgh’s Cowgate area. The focus Edinburgh’s Cowgate area. The focus groups included both drug and groups included both drug and

alcohol usersalcohol users

Young PeopleYoung People

Rock Trust, EdinburghRock Trust, Edinburgh

The Rock Trust offers support to The Rock Trust offers support to young people aged between 16 and young people aged between 16 and 25 years of age. The focus group 25 years of age. The focus group took place at the Rock Trust drop-in took place at the Rock Trust drop-in on Albany Street, Edinburghon Albany Street, Edinburgh

Mid and East LothianMid and East Lothian

MELDMELD

The focus group was conducted in The focus group was conducted in Prestonpans and included service Prestonpans and included service users from Mid and East Lothian users from Mid and East Lothian attending MELD. MELD is a attending MELD. MELD is a community based drug service community based drug service offering a range of services for drug offering a range of services for drug users, their families and friendsusers, their families and friends

West LothianWest Lothian

The West Lothian focus group took The West Lothian focus group took place at Strathbrock Partnership place at Strathbrock Partnership CentreCentre

Moving OnMoving On

Chrysalis Project, Edinburgh (Turning Chrysalis Project, Edinburgh (Turning Point Scotland)Point Scotland)

The Chrysalis Project provides a structured The Chrysalis Project provides a structured 12 week day programme for drug users 12 week day programme for drug users

who wish to address their offending who wish to address their offending behaviour, employability issues and behaviour, employability issues and relapse prevention. The project isrelapse prevention. The project is

designed essentially for stable drug users designed essentially for stable drug users who are at the stage of considering how who are at the stage of considering how best to address their future in terms of best to address their future in terms of

moving on from drug usemoving on from drug use

Findings

Access to drug servicesAccess to drug services

Difficult for a number of participants Difficult for a number of participants and for a variety of reasonsand for a variety of reasons

Waiting times – Although DAAT Waiting times – Although DAAT monitoring and TAPS now in-situmonitoring and TAPS now in-situ

Access to services should be Access to services should be provided at the time of needprovided at the time of need

Access to services (Cont’d)Access to services (Cont’d)

Information on the available servicesInformation on the available services Details on waiting times in respect of Details on waiting times in respect of

accessaccess Service providers’ attitudes being Service providers’ attitudes being

crucial in seeking helpcrucial in seeking help View that access to services was View that access to services was

inequitableinequitable

Service users experience of care Service users experience of care provisionprovision

Views on the provision of drug Views on the provision of drug services was varied.services was varied.

Younger service users were more Younger service users were more informed about the range of services informed about the range of services available and provided a more available and provided a more positive response to the treatment positive response to the treatment and support they had received than and support they had received than other focus group participants.other focus group participants.

Service users experience of care Service users experience of care provisionprovision

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 Service users experience of care provision Service users provision Service users

experience of care provisionexperience of care provision 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 Service users experience of care provisionprovision

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 Service users experience of care provisionprovision

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 Service users experience of care provisionprovision

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

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…Some Quotes…

“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…Some Quotes…

“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?