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 Service)

·  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 training

·  Facilitating modifications to their home, school and work environments

·  (Framework for a Multidisciplinary Approach to Low Vision, 2001)

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

·  Bereavement

·  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 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

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, London

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

·  Grief

·  Identity and meaning

·  Mortality and frailty

·  Power and control

·  Relationships

·  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 calibrated.

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, 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'

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 information- integrated 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

RNIB

0117 9341702

Full report and research brief available at: www.rnib.org.uk/esac