Vision Rehabilitation Services: Increasing the Evidence Base

Parvaneh Rabiee, Kate Baxter, Gillian Parker and Sylvia Bernard

RNIB Research Day 2014: Rehabilitation and social care

RNIB, 105 Judd Street, London20 October 2014

Background and the rationale for the project

Aims and methods

The key findings

Conclusions

Implications for policy and practice

Structure of presentation

A rise in the number of people living longer with long-term conditions

Sight loss is most prevalent among older people Increasing pressure on health and social care

services

Preventive and rehabilitation services are a high policy priority for all care settings Reduce the number of people entering the

care system Reduce needs for on-going support

Background

Growing interest in rehabilitation not a new idea: 1997: The Audit Commission

2000 onwards: Significant investment in intermediate care and reablement services

2010: DH guidance on eligibility criteria for adult social care - endorsed by: UK Vision Strategy Advisory Group 2013 Vision 2020 UK 2013 ADASS guidance 2013

2013: RNIB - ‘Facing Blindness Alone’ campaign

2014: Recent DH Care Act guidance

Background …

Much of the existing research has focused on low vision services – not clear What community-based rehab services are

currently doing to support people with VI What impact they have on people with VI What a model of ‘good practice’ might look like

The study funded by Thomas Pocklington Trust is the first step towards a future full evaluation study of vision rehabilitation services

The rationale for the project

To provide an overview of the evidence base for community-based vision rehab interventions: People aged 18 and over Rehab interventions funded by LAs in England

The study involved 4 main research elements: A review of literature Scoping workshops with people with VI and key

professionals A national survey Case studies

Aims and methods

No secure evidence around effectiveness, costs and different models of community-based vision rehab services – however some strong messages for:

The potential for vision rehab to have a positive impact on daily activities and depression

High prevalence of depression in people with VI and increased need for emotional support

Vision rehab interventions mostly target physical/functional rather than social and emotional issues

The cost effectiveness of group-based self-management programmes

The literature review

Survey respondents (87)

All LAs (152)

0% 10% 20% 30% 40% 50% 60% 70% 80% 90%100%

In-house Contracted outCombination Joint health/social careSocial enterprise OtherNone Not known

Who provides vision rehab services?

Specialist physical & sensory

Generic adult social care

Multi-disciplinary/other

Specialist vision impairment

Specialist sensory impairment

0% 10% 20% 30% 40% 50% 60% 70% 80%

Contracted out In-house

How do teams describe themselves?

Other (not vision

specialist)

Occupa-tional

therapist

Specialist in sensory

impairment

Specialist in vision im-pairment

Generic social worker

0% 20% 40% 60% 80%

Contracted out In-house

Background of team managers

60% screened by professional with specialist vision rehab skills

95% assessed by professional with specialist vision rehab skills

25% required FACS assessments

66% reported a waiting list

Average waiting time 8-10 weeks

Accessing vision rehabilitation services

Standard tools

Measured impact

0% 20% 40% 60% 80%

Contracted out In-house

Measuring Impact

Survey data on budgets poorly reported Annual budgets £13,000 to £800,000 Average budget £221,000 Annual caseloads 16 to 2000

Additional data from three case studies Annual budgets £238,000 to £336,000 Annual caseloads 282 to 3322

Costs and caseloads

Who provides the service A and B: LA in-house C: Contracted out service

Team delivering vision rehab A: Sensory Needs B and C: Visual Impairment

Manager specialism A: Social Work B and C: Visual Impairment

Current waiting time: A: up to 6 months B: up to 2 months C: up to 1 month

Case studies

35-40% of time spent on admin duties – travelling time varied

Differences in the way services operated

Sites A & B restricted activities to one-to-one intervention - Site C offered a range of group-based activities

Only one site (C) measured outcome using an evaluation tool

Limited staff training & networking opportunities - more opportunities in site C

Key features of vision rehabilitation services

Access to specialist knowledge and skills Concerns about the loss of specialist input within

the team

Early access to vision rehab interventions Late referrals risk care needs intensifying and

clients losing motivation A tendency among health professionals to see

vision rehab as the last resort

The characteristics of people who use vision rehab services

Staff views on factors impacting on the benefits of vision rehab support

A long gap between diagnosis and referral - in particular those with degenerative conditions

Rehab goals tailored around individual needs

Support could continue as long as needed - But...Waiting list to get additional training - Site BTime constraints - Site C

Progress monitored informally & no follow-up contacts

Experiences of people who use vision rehab services

Boosted confidence, improved independence. Increased motivation

People felt safer

Greatest benefits related to mobility training, independent living skills and supply of aids, adaptation and equipment.

Group-based activities offer great opportunities to socialise and learn from peers’ experiences

Positive impacts on families

Experiences of people who use vision rehab services

Information not always forthcoming and timely Concerns about future needs

Help often offered when it is too late/when people ‘have to have it’

Emotional needs not met effectively

Social activities most often geared towards older people

Perceived limitation of vision rehab support for people who use services

Staff with specialist knowledge and skills High quality assessment Personalised support Offering a wide range of support Flexibility to adapt to users’ abilities Timely intervention Shared vision among all relevant health and

social care staff Regular follow-up visits Easy access to information

Key features of good practice

Potential for vision rehab to have a positive impact on the quality of life for people with VI

A wide variation of vision rehab provision – measuring outcomes not a common practice

Restricting access on the basis of FACS assessment

Negative impacts of financial cuts

Lack of recognition of specialist vision rehab skills

Group-based activities effective but limited

Main focus is on the physical aspects of life

Conclusion - key messages

All LAs should follow the recommended practice on FACS eligibility criteria – timely intervention

Raising the profile of specialist vision rehabilitation skills

Safeguarding specialist assessments

Taking account of individual priorities

Improved staff training and networking opportunities

Greater focus on group-based activities

Implications for policy and practice