Middle Step An evolving best practice model addressing the emotional needs of people with sight loss Carl Freeman Health and Social Care Policy Manager (Guide Dogs)

What do we know? Functionality and the needs of blind and partially sighted adults – a survey Major research providing detailed understanding and description of how blind and partially sighted people function in every day life

What the research found Restricted “functionality” in three key life activities: Mobility Independence Wellbeing Furthermore the individual’s state of wellbeing was found to significantly affect their mobility and independent living

Major barriers to functionality Depressive symptoms such as:- –Loss of Confidence –Anxiety –Fear these placed limitations on functionality in general and on mobility in particular

The findings mirrored those of previous studies It is loss of wellbeing which significantly affects an individual’s motivation to be mobile, their functionality and quality of life Between 25% and 33% of visually impaired older adults have experienced depressive symptoms Added to which…… The prevalence of mental health problems is even higher in young and middle-aged adults with vision loss –40%-45% clinically depressive symptoms –20% moderate to severe anxiety problems

Focusing on depression Depression is an umbrella term which varies enormously in its presentation, course and outcomes

Aetiology of depression Genetic Biochemical Endocrine Psychological and social influences Multi-factorial

Unequivocal evidence There is a well established link between visual impairment and depression –that’s why we are here isn’t it? Visual impairment is a much stronger risk factor for depression than other common age-related health conditions

Middle Step pilots - the hypothesis If wellbeing is not an enabler of functionality, of mobility and independent living……… …..the provision of “emotional support” (a middle step) in whatever guise would make NO significant impact on the achievement of an individual’s outcomes or goals

Specific aims of the Middle Step pilots Confirm the need for emotional support Determine the impact and degree of improvement in functionality as a result of the Middle Step service Understand the enablers of, and inhibitors to, an effective service Validate measures of functionality (functionality indices)

Predicted outcomes Improved levels of wellbeing Improved levels of functionality without rehabilitation (+) Improved levels of functionality with rehabilitation (++)

Criteria for inclusion in the Middle Step Service users: registration as blind or partially sighted –giving signed or verbal consent Service provider: acceptance of the resource implication of such a service –commitment of staff availability

What we did – How we went about it In order to ensure that the Middle Step concept was sound it was trialled in one locality (RNIB Lothian) prior to full implementation of the pilots 3 groups comprising a total of 20 individuals The initiative was deemed sound by both service users and service providers

Phase 1 10 pilot sites were set up in a wide variety of geographic and organisational settings Existing services had to be re-aligned rather than new ones created Participants were all recently registered The need for, and delivery of, “emotional support” was identified and actioned by experienced professionals either within or out with the group environment

Functionality measures were developed Functionality measures were developed and were used both pre and post intervention to measure an individual’s abilities in the key areas of: –Mobility –Independent Living Skills –Wellbeing

Results 24 Groups, comprising 91 individuals completed the pilot initiative, 19 of whom served as controls Full statistical analysis of the data has provided pre and post intervention index measures. (Age, gender and wellbeing were accounted for) A one day feedback meeting for all pilot staff was organised for the exchange of experiences and collection of opinions

Results continued All in the intervention groups completed 3 questionnaires (ie. 72 individuals) prior to implementation of emotional support strategies. i.e. pre- intervention measurements were determined The questionnaires addressed the three key areas of Mobility, Independent Living and Wellbeing Post intervention measures were then determined and calculated

The control group The control group (19 participants) comprised a group of individuals who received a standard rehabilitative intervention, ie. best current practice, with NO additional provision of special means to improve their overall wellbeing –i.e. rehabilitation input but no Middle Step They also completed 3 questionnaires pre and post rehabilitative intervention

Achieved outcomes Improved level of wellbeing Improved level of wellbeing without improved levels of functionality Improved level of wellbeing with improved levels of functionality Improved levels of functionality with rehabilitation input

Statistical Outcomes

Outcomes - independence and mobility In the groups which received emotional support there was significant improvement in ILS and Mobility from the first to the second visit There was improvement in the “control group” in ILS and mobility but the degree of improvement was much less than in the intervention groups (they showed “statistically significant” improvement)

The mean change between assessments ILSIntervention Grp Control Group p <0.001 p 0.97 MobilityIntervention Grp Control Group p <0.001 p 0.75 Wellbeing Intervention Grp Control Group p <0.001 p <0.01

Outcomes - Wellbeing There was significant improvement in wellbeing from first visit to the second visit in individuals comprising the groups which had received emotional support There was also improvement in wellbeing amongst individuals in the group which did not receive emotional support but the “statistical confidence” in this control group result was significantly lower

The mean change between assessments ILSIntervention Grp Control Group p <0.001 p 0.97 MobilityIntervention Grp Control Group p <0.001 p 0.75 Wellbeing Intervention Grp Control Group p <0.001 p <0.01

Conclusions The Middle Step model improves the functionality and wellbeing of visually impaired people The Middle Step model is successful in a hospital based environment and one in which the links between the hospital and community rehab services are well established

Lessons and implications Organisations should be clear as to the resource implications Need a middle step lead on each site Must be led by suitably qualified staff who can deliver timely and appropriate emotional support Referral by ophthalmologist is key to success and collaboration is essential

Phase II Randomised Control Trials

Phase II Randomised Control Trials planned to start in 2010 will: Require ethical approval Explore the most effective type(s) of emotional support Hopefully lead to specific NICE guidelines

RCTs - what we will be looking at. Clinical depression (assessment (when) diagnosis (how), treatment by (CBT/PS etc) Medical discharge – discharge into community (ongoing emotional support / social care ) Service implications

Types of emotional support (1) Supportive psychotherapy counselling, which helps ease the pain of depression, and addresses the feelings of hopelessness that accompany it (2) Cognitive-behavioural therapy (CBT), which is purported to change the pessimistic ideas, unrealistic expectations, and overlay critical self-evaluations that create depression and sustain it

Types of emotional support (3) Problem solving therapy/treatment (PST), which change the areas of the person's life that are creating significant stress (This may involve developing better coping skills) (4) Self-management (SM) therapy is considered to integrate both cognitive and problem-solving models of intervention and offers tools so that an individual can learn to help themselves on their own path to recovery from depression

Thank you for your attention