Evaluation of Emotional Support and Counselling ESAC within

Evaluation of Emotional Support and Counselling (ESAC) within an Integrated Low Vision Service VINCE 24 th March 2011 Louise Bowen Suzanne Hodge Martina 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

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 training • Facilitating modifications to their home, school and work environments (Framework for a Multidisciplinary Approach to Low Vision, 2001)

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)

Qualitative findings: 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

‘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

Findings from the CORE-OM data Non-clinical cut-off 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-Integrative • Accessible • Bio-Psycho-Social

Therapeutic Themes • • • Grief Identity and meaning Mortality and frailty Power and control Relationships Social realm

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)

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- not one size fits all service • 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, assessment/evaluation Clinical practice guidelines and resources Organisational guidelines Outreach plan and information Service integration Supporting information and research

For Further Information Rebecca Sheehy Older People Officer Early Reach Evidence and Service Impact RNIB 0117 9341702 Rebecca. Sheehy@rnib. org. uk Full report and research brief available at: www. rnib. org. uk/esac