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Evaluation of Emotional Support and Counselling (ESAC) within
an Integrated Low Vision Service
VINCE 24th March 2011
Louise BowenSuzanne HodgeMartina Leeven
Introduction
• 3 year pilot project (2007-2010)• Funded by Glaxo Smith Kline and RNIB• 2 sites - Camden and Islington (RNIB ) and
Gateshead (Sight Service)• 1 part-time counsellor in each site• Independent evaluation by University of
Liverpool
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)
Who uses the services?
• 65% female; 45% male.• Average age 68 for women; 58 for men. • Age range of 15-95.• 53% retired; 28% unemployed; only 5% in
paid employment.• 45% had Macular Disease
• Physical health - arthritis, diabetes, stroke, heart disease etc.
• Ethnicity: 98% White British in Gateshead; 55% in London.
• 63% in London live alone, 43% in Gateshead.
• 41% reported a mental health problem: 33% in Gateshead and 52% in London.
The need for the services• The sight loss journey• Depression and psychological distress• Bereavement• Relationship difficulties• Physical health problems• Loss of confidence, social withdrawal and
isolation
Baseline CORE scores
Males Females
Previous studies*
Present study
Previous studies*
Present study
Well-being 1.37 2.40 1.77 2.30
Problems/ symptoms
1.44 2.41 1.62 2.11
Functioning 1.29 1.33 1.30 1.31
Risk 0.43 0.31 0.31 0.27
*Non-clinical population. Cited by CORE System Group (1998)
‘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
‘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
‘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
‘…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
Changes in CORE scores
‘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
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
‘…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
How the services work: accepting and adapting
‘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
‘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, London
‘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
The Clinical Model
• Humanistic• Accessible• Bio-Psycho-Social
Therapeutic Themes
• Grief• Identity and meaning• Mortality and frailty• Power and control• Relationships• Social realm
The Therapist Experience
• Making 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)
The Low Vision ESAC modelA holistic, multi-professional, integrated service
including: • Planning the rehabilitative process• Addressing psychological needs• Assessing the person's visual function and providing
aids and training• Facilitating modifications to their home, school and
work environments (Framework for a Multidisciplinary Approach to Low
Vision, 2001)
ESAC key service features• Integrated- multi-professional, containing
support for clients at time of high anxiety• Accessible- physical building, information,
interventions, self-referral throughout sight loss journey
• Flexible- in person, telephone, home visit, weekly, fortnightly
• Non-medical environment- role modelling, sense of belonging, 'safe place'
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)
…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
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)
Rehab and Counselling• ' 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)
The ESAC Service Manual• The integrated service model• Counselling model and assessment/eval• Clinical practice guidelines and resources• Organisational guidelines• Outreach information • Service integration • Supporting information and research
For further information
Full Research Report : www.rnib.org.uk/esac
Contact: Rebecca SheehyOlder People Impact Team Manager
Rebecca.sheehy@rnib .org.uk