(ESAC) within an Integrated low vision service

1) Evaluation of Emotional Support
and Counselling (ESAC) within an
Integrated Low Vision Service
VINCE 24th March 2011
Louise Bowen
Suzanne Hodge
Martina Leeven
Supported by:
GlaxoSmithKline, University of Liverpool, RNIB, Gateshead Sight
Service, Action for Blind People
2) Introduction
 3 year pilot project (2007-2010)
 Funded by Glaxo Smith Kline and RNIB
 2 sites - Camden and Islington (RNIB ) and Gateshead (Sight
 1 part-time counsellor in each site
 Independent evaluation by University of Liverpool
3) The Low Vision ESAC model
A holistic, multi-professional, integrated service including:
 Planning the rehabilitative process
 Addressing psychological needs
 Assessing the person's visual function and providing aids and
 Facilitating modifications to their home, school and work
 (Framework for a Multidisciplinary Approach to Low Vision,
4) Methods used in the evaluation
Data from service users:
Demographic and basic clinical data (n=98)
CORE-OM questionnaire x 2 (n=35)
Short ‘Needs and Expectations’ (NE) questionnaire x 2 (n=32)
Semi-structured qualitative interviews (n=14)
Qualitative interviews with service providers (n=15)
Questionnaire to supporting relatives and friends of service
users (n=7)
5) Qualitative findings: the need for the services
The sight loss journey
Depression and psychological distress
Relationship difficulties
Physical health problems
Loss of confidence, social withdrawal and isolation
6) ‘I mean it had gone just overnight, somehow this eye had gone
and it was really pretty awful, a terrible, terrible thing. I couldn’t
see, couldn’t read my newspaper, it was almost tear time, but I
don’t cry because I’m a hardy Scot. So that was it, devastating…’
Ian, 72, London
7) ‘I mean I’m a widow actually, my husband died seven years
ago now but I’m still trying to get used to it, and so that was a big
blow and then this started, so the two things together do engender
a loss of optimism...’ Sara, 77, London
8) ‘I think the biggest thing, my sight loss wasn’t too bad, I was
fine until I had the heart attack, it was the heart attack that just put
the lid on it.’ Michael, 62, Gateshead
9) ‘…for five years I was cooped up in the house and I just
excluded myself from everybody and I just felt like there’s no way,
there’s no way I can do anything and I felt like I was the only
person that can’t see anything in the world.’ Lydia, 36, Gateshead
10) Findings from the CORE-OM data
A chart shows the changes in the mean CORE scores for the full
CORE sample of 35 service users.
The chart demonstrates the cut-off scores for non-clinical
populations, as derived from previous studies. At baseline it is
clear that our study sample falls within the realm of a ‘clinical
population’ in all CORE domains except risk, and particularly in the
domains of well-being and problems/symptoms.
The chart shows that there are marked improvements in each of
the 4 domains, so much so that by post-intervention the scores fall
below the non-clinical cut-off in each domain i.e. the study sample
no longer represents a clinical population.
Statistical analysis confirmed the significance of this change
between baseline and post-intervention (in all cases p<0.01).
There was a similar significant improvement in the total CORE-OM
score, with the mean for the sample falling from 53.34 at T1 to
30.83 by the T2 assessment (t=7.323; p<0.001).
11) ‘This place here saved my life really, I’d have been dead if it
wasn’t for this place. (…) I was ready to do myself in.’ Michael,
62, Gateshead
12) How the services work: normalising feelings
‘I think it’s just good talking to someone who is like impartial like to
your situation and you can, because like I think it’s harder to talk to
like your friends or your family…’ Rachel, 16, Gateshead
13) ‘…she’d listen, she’s not laying it on you, you have to do this,
you should expect this, no she lets you speak, you speak and then
she will just gently add something, if you look at it this way or you
look at it that way…’ Alicia, 75, London
14) How the services work: accepting and
‘I’m trying to stay calm. Because that’s what sets it off. (...) this is
what the lady at the counselling sort of helped us to do. I can still
get around but differently.’ Dawn, 42, Gateshead
15) ‘It's not only me, many people have eyesight problems as
well. But the most important thing is how to be positive. (…) Last
year, I was very unhappy and I sat here hating myself and it was
very negative. I feel I’m - I feel calm nowadays.’ Hannah, 60,
16) ‘How was it helpful with [counsellor]? Because it brought to
my attention that there’s a life after, even if you do go blind it
doesn’t mean it’s the end of the world, she actually filled me in as
to how to cope with it. She helped with that way, the things that
you could actually do in the voluntary sector, that didn’t mean you
were finished with work or whatever.’ Bill, 72, Gateshead
17) The Clinical Model
 Humanistic-Integrative
 Accessible
 Bio-Psycho-Social
Notes: Relational work; collaborative rather than a therapist
directed in order to best foster growth of client’s autonomy and self
esteem. Open, accepting, non judgemental. An aspect of
therapeutic expertise lies in not retreating behind being the expert.
Also a bespoke approach meeting each individual client with
whatever the therapist thinks will best serve them at that moment
from their consolidated theory and skills base.
Pure CBT as a manual driven approach often involves writing and
form filling which can be problematic in terms of accessibility.
Elements of CBT however may be useful eg when working with
aspects of depression and anxiety.
Internal psychological processes as well as the physical/functional
and relational social aspects of experience. The whole field in
Gestalt terms.
18) Therapeutic Themes
Identity and meaning
Mortality and frailty
Power and control
Social realm
Notes: The huge presence of loss; how past losses are evoked.
Classical grief model however places experience in a locus
characterised by comparative lack which allies with the medical
rather than social model of disability.
Existential questions
Co-morbidity – particularly diabetes
How self support and environmental support are accessed and
How I am seen – the white stick dilemma - ‘In reality we’ve learned
that we do not have to be symbols for anyone’ vs the ‘thousand
signifiers’ (Kuusisto)
19) The Therapist Experience
Therapeutic contact
Working with cultural and organisational introjects eg being
‘helpful’ vs ‘being with’
The non VI therapist – empathic companion in the felt world –
‘the dark has it’s own sunlight’ (Stephen Kuusisto, Planet of the
Blind 1998)
Notes: Sometimes literally physical contact e.g when acting as a
sighted guide. Much information will have been exchanged even
before reaching the therapeutic space. Also how adjustments are
made in terms of eye contact.
The matron at the Bensham workhouse 1886 – ‘a comforting
counsellor’. Old style philanthropic attitudes towards the blind.
Wanting to be helpful, wanting the good research outcomes vs
sitting with a beginners mind (and still incorporating the necessary
research requirements!)
The difference between us – how can you ever know what this is
like for me? Therapist guilt?
The integrated experience, acceptance and enrichment.
20) ESAC key service features
Integrated- multi-professional, containing support for clients at
time of high anxiety
Accessible- physical building, information, interventions, selfreferral throughout sight loss journey
Flexible- in person, telephone, home visit, weekly, fortnightly- not
one size fits all service
Non-medical environment- role modelling, sense of belonging,
'safe place'
Note: based on integrated team - optom, rehab, counsellor
21) Challenges of integrating service
'why am I not referring…often we'll provide that level of support on
the day, to the point where people will feel really good, within the
scale of 2 hours, and so they'll decline the (counselling) service, or
we'll feel that they're quite happy they don't need the service… But
I often feel I am doing too much of that emotional support myself…
I'm sort of talking about understanding boundaries, and making
sure I refer into the service properly.' (optom)
Note: The journey of integrating counselling into an existing
service was not always straight forward. Although it is a gold
standard in LV services to have emotional support provision, in
reality it is often the optoms and rehabs providing some level of ES
themselves. Part of integrating was about re-defining boundaries
and roles, and clarifying the difference between emotional support
and counselling.
22) More challenges
Challenging counselling stigma
How staff offer counselling
Reviewing boundaries and risk in an integrated service
Getting referrals in
Reaching the 'unheard unseen' client group
Note: Counselling stigma- normalising counselling and modelling this
with team and clients.
Staff not responsible for assessing psychological need - often we
cannot tel l- defenses, 'coping', 'getting on with it'
Risk/Boundaries- confidentiality, Need to know informationintegrated support for client, agreeing shared info, Ex.
rehab/counselling working together
Protocols and guidelines overlapping professionals and clinical vs
organisational governance. Who is responsible? Confidential incident
book? Crisis folder?
Outreach- setting up referral pathways takes time, internal ones set
up in LVC
LV meant people who normally don't access counselling but are very
much at risk, will be referred
23) Benefit of an integrated model
'There are many patients that I see that it is a relief to me to know
that I can arrange counselling directly. The fact that it is attached
to the service is reassuring as it means that the service user is
definitely followed up and not lost in the general referral system,
and they are seen by a counsellor who understands the specific
needs of a person who is experiencing sight loss.'
(Lead optometrist, London)
24) ‘There are service users seen here that are so distressed by
their eye condition that they are not in the right frame of mind to
accept low vision aids without working through their anxieties and
feelings of loss first'
(Optometrist, London)
'There are times when the rehabilitation process cannot begin
because a person is just too emotionally raw'
(Rehab worker, Gateshead)
25) The ESAC Service Manual
The integrated service model
Counselling model, assessment/evaluation
Clinical practice guidelines and resources
Organisational guidelines
Outreach plan and information
Service integration
Supporting information and research
Notes: Project has now come to an end and leaving behind 2
important products:
• the research report with robust set of findings both qualitative
and quantitative.
• The service manual which is a resource of running future
counselling services
We would like your views on the contents of this manual:
'what would you find useful to support you in your work or setting
up a counselling service in this remit?'
26) For Further Information
Rebecca Sheehy
Older People Officer Early Reach
Evidence and Service Impact
0117 9341702
Full report and research brief available at: www.rnib.org.uk/esac