Sight loss affects all aspects of well-being including daily functioning and mental health. Demographic trends suggest that the number of people with visual impairment is set to rise significantly, with many people experiencing an additional disability or health problems. By 2050, the number of blind and partially sighted people in the UK is estimated to increase by around 122 per cent, to approximately four million. Promoting preventive and rehabilitation interventions is recognised as a high priority for all care settings as a way of reducing demands on health and social care services. This research, funded by the Thomas Pocklington Trust, aimed to provide an overview of the evidence base for community-based vision rehabilitation services for people over the age of 18 with visual impairment. The study focused on rehabilitation services funded by local authorities to find out how these services are currently supporting people with visual impairment, what possible outcomes they might achieve and to identify gaps in the evidence base about current service arrangements. The study was carried out in England. Findings were intended to inform a future full scale evaluation as well as inform services

Baxter, Kate

Bernard, Sylvia Margaret

Parker, Gillian Mary

Rabiee, Parvaneh

White Rose Research Online

This is a repository copy of Vision rehabilitation services : what is the evidence? Final report..White Rose Research Online URL for this paper:https://eprints.whiterose.ac.uk/83998/Version: Published VersionMonograph:Rabiee, Parvaneh orcid.org/0000-0002-0180-1745, Parker, Gillian Mary orcid.org/0000-0002-2221-6748, Bernard, Sylvia Margaret et al. (1 more author) (2015) Vision rehabilitation services : what is the evidence? Final report. Research Report. Social Policy Research Unit, University of York , York. eprints@whiterose.ac.ukhttps://eprints.whiterose.ac.uk/Reuse Items deposited in White Rose Research Online are protected by copyright, with all rights reserved unless indicated otherwise. They may be downloaded and/or printed for private study, or other acts as permitted by national copyright laws. The publisher or other rights holders may allow further reproduction and re-use of the full text version. This is indicated by the licence information on the White Rose Research Online record for the item. Takedown If you consider content in White Rose Research Online to be in breach of UK law, please notify us by emailing eprints@whiterose.ac.uk including the URL of the record and the reason for the withdrawal request. www.pocklington-trust.org.ukVision rehabilitation services:what is the evidence? Research FindingsPublished by Thomas Pocklington TrustThis publication summarises findings from researchcommissioned by Thomas Pocklington Trust to draw togethersources of evidence about vision rehabilitation services. The research was conducted by Parvaneh Rabiee, Gillian Parker,Sylvia Bernard and Kate Baxter at the Social Policy Research Unit,University of York. Summary findings • People with sight loss are positive about the impact of visionrehabilitation services on their safety, confidence andindependence. Some would like earlier access to services andmore readily available information. • The existing evidence base for community-based visionrehabilitation services is under-developed. However, there arestrong indications of the potential for these services, inparticular group-based interventions, to have a positive impacton people’s daily life and emotional well-being. • A survey of rehabilitation services found they vary widely in thetype of provider, type of support offered, structure and skills ofteams delivering interventions, caseloads and waiting times.Services provided by voluntary organisations appear toexperience more pressure on budgets and staffing ratios thanlocal authority services. • A quarter of services inappropriately required people to have aFair Access to Care Services (FACS) assessment to determinetheir eligibility to receive the service. Two thirds have a waitinglist. The average waiting time is 10 weeks. Service managersand staff are concerned about shortages of staff and inadequateopportunities for staff training and continuing professionaldevelopment (CPD).• Services are more likely to address people’s need for mobility,independent living skills, aids, adaptations and equipment thantheir need for emotional support. Thomas Pocklington Trust46February 2015• Just over a half of services say they measure outcomes andless than half of these use standardised measurement tools.BackgroundSight loss affects every part of a person’s life. It is morecommon among older people. In the UK’s ageing populationthe number of people living with sight loss is forecast to morethan double by 2050 to around four million. This suggestsincreased pressure on health and care services. Preventative and rehabilitation services are a high priority forpublic policy. In England, under the Care Act 2014, for thefirst time vision rehabilitation services are recognised as a keypreventative service. The expectation is that these services cansupport independence and reduce demands for other healthand social care services. Research aimsThe research summarised here aimed to provide an overviewof evidence of the impact and cost effectiveness ofcommunity-based vision rehabilitation services. It exploredhow these services support people with visual impairment andthe outcomes they can achieve. Findings were intended to inform a future full scale evaluationand current services.Research methodsInformation was collected by four methods: • A review of existing research about vision rehabilitationservices published internationally since 2000. • Workshops, two in London and two in York, with peoplewith visual impairment and professionals delivering ormanaging vision rehabilitation services.• A national survey of local authority funded providers ofvision rehabilitation services.• Case studies of three models of vision rehabilitation services.These drew on focus groups with people working withinthe services and individual interviews with people who hadreceived their services.The workshops, survey and case studies were carried out inEngland and focused on vision rehabilitation services forpeople aged 18 and over, funded by local authorities.www.pocklington-trust.org.uk Research Findings 462www.pocklington-trust.org.uk Research Findings 463Findings1 The state of current evidenceThe review of existing literature found that research lookingat community-based vision rehabilitation services and theircost-effectiveness is limited in scope and quality. However, itidentified some key messages:• Vision rehabilitation services, in particular group-basedself-management programmes have the potential topositively affect activities of daily living (such as dressingand toileting), instrumental activities of daily living (suchas cooking and shopping) and psychological outcomes(such as emotional adjustment to sight loss). • Group based self-management programmes have thepotential to be cost-effective.• There is a high prevalence of depression in people withvisual impairment and need for emotional support.• Vision rehabilitation interventions mostly address physicaland functional needs rather than social and emotionalissues. An approach that is holistic and multi-dimensionalis likely to have a greater effect on quality of life than onewhich concentrates on one set of needs.2 Current vision rehabilitation provisionThe survey of local rehabilitation services was completed by87 services, (57% of English local authorities). It showed adiverse pattern of provision. The two main types ofproviders were local authority (LA) in-house (61% ofservices) and voluntary organisations (28% of services).Other providers were joint health and social care, socialenterprises, and private (for profit) organisations. The most common type of team within LA in-house serviceswas a broad sensory impairment team (57%). Seventy fivepercent of voluntary sector providers were specialist visionrehabilitation teams. A quarter of services required a FACS community careassessment to determine eligibility. In 40% of services theinitial screening of referrals was sometimes undertaken bystaff without specialist skills in vision rehabilitation.Annual caseloads were measured differently; some servicesrecorded the number of people supported and others thenumber of episodes of support provided (with most peoplereceiving multiple episodes). These differences meant it wasnot possible to calculate the cost of services per person. Shortages of specialist staff, inadequate training and CPDopportunities and lack of recognition in adult social care ofthe importance of specialist vision rehabilitation skillsconcerned managers and staff. Measuring outcomes for service users, and the use ofstandardised measurement tools, was not universal. Voluntarysector providers were more likely to be measuring outcomesthan LA in-house services (70% and 46% respectively).A key concern among managers and staff in visionrehabilitation services was the impact of financial cuts ontheir ability to provide responsive and effective services. Cutsput pressure on the numbers and types of staff, waiting timesand the type of support provided. These pressures werebeing felt more strongly in the voluntary sector than LAs:27% of voluntary sector services reported a decrease in theirbudgets in the last 12 months, compared with 14% of LA in-house services3 Types of vision rehabilitation interventionsMost interventions addressed mobility; independent livingskills; and aids, adaptations and equipment. Emotionalsupport, particularly counselling, was less likely to be offered.Around a third of services offered self-management courses,including 25% of LA in-house services and 39% of voluntarysector services. All group programmes, including self-management courses, were reported to be a casualty offinancial cuts. Data from the case study sites echoed thesesurvey findings.4 Staff perspectives – the case study sitesRehabilitation staff were committed and enthusiastic aboutrehabilitating people with visual impairment but felt theirteams’ ability to work effectively was restricted by timepressure, inadequate training and networking opportunitiesand difficulties collaborating with some external teams. Theyfelt that poor collaboration and delays in referral to therehabilitation team risked care needs intensifying and that ifpeople become accustomed to their existing care andsupport, they lose motivation to regain independence. Lackof recognition of specialist rehabilitation skills among otherprofessionals was seen to undermine timely referrals and jointworking.www.pocklington-trust.org.uk Research Findings 464‘... while they[consultants] weretreating somebody,they wouldn’t thinkabout referring toour service .... it waslike to them we arethe last resort ...They hadn’t seen itthat way round forthe patient.’www.pocklington-trust.org.uk Research Findings 4655 Perspectives of people using services – the casestudy sitesMost people with visual impairment interviewed in the casestudies felt that vision rehabilitation services had made themfeel safer and had positive impacts on their confidence andindependence, with many feeling more motivated to learnnew skills. Delay in being referred to vision rehabilitationservices (particularly for people with progressive conditions),and lack of accessible and timely information about theseservices were key concerns for them. Some people felt thatvision rehabilitation had focused on the physical aspects oftheir life, giving little attention to emotional well-being.Group-based activities had provided opportunities tosocialise and learn from peers’ experiences, but suchactivities were said to be limited. Younger people felt socialactivities were geared towards older people.6 Key features of ‘good practice’The findings from across the project indicate the keyingredients of ‘good practice’ for vision rehabilitationservices:• Staff with specialist knowledge and skills • High quality assessment and initial screening• Personalised support • Flexibility to match the duration and content of support toan individual’s abilities and priorities • Developing and delivering support in partnership withpeople with sight loss • Offering a wide range of interventions, including group-based activities, that address physical, functional, social andemotional needs• Clarity among health and social care staff about the aims,potential and limitations of vision rehabilitation services andgood access to resources outside the vision rehabilitationservice • Timely intervention to prevent care needs intensifying andpotentially reduce future care costs • Regular reviews and follow-up visits to assess progress andmonitor outcomes • Timely and accessible information about vision rehabilitationservices.‘Without [therehabilitationteam] there wouldbe no training,there would be noequipment for meto use. I’d berelying on peopleto do things forme, not doing itmyself. I’d berelying onsomebody to cookfor me, not doing it myself.’www.pocklington-trust.org.uk Research Findings 466Conclusions and recommendationsThe findings from this research suggest that vision rehabilitationservices have the potential to improve the quality of life andindependence of people with visual impairment. These servicescan support policy objectives to promote prevention andrehabilitation. However, the study found that robust evidence ofthe impact and cost effectiveness of different models ofcommunity-based rehabilitation services is limited in scope andquality. Further research is required to identify what works, forwhom and at what cost, in order to guide services. The following aspects of vision rehabilitation services need to beaddressed by commissioners and service providers: • Protection of specialist, qualified, vision rehabilitation andassessment. • Raising the profile of specialist vision rehabilitation skills byincreasing understanding among relevant health and socialcare professionals about the aims, potential and limitations ofvision rehabilitation services. • Ensuring timely intervention.• Facilitating access to training and CPD for staff, in particularto enable staff to address psychological issues or to referpeople to specialist services. • Giving people with sight loss accessible and timelyinformation about vision rehabilitation services. • Taking account of individual priorities and paying attention tosocial and emotional issues, as well as physical and functional.• Supporting group-based interventions.While in England the Care Act 2014, which comes into force inApril 2015, has replaced FACS criteria with a national eligibilitythreshold, it now requires local authorities to providerehabilitation services irrespective of whether the person haseligible needs.  Hence, local authorities should ensure access tovision rehabilitation is not dependent upon a person’s eligibilityfor care and support. AuthorsParvaneh Rabiee, Gillian Parker, Sylvia Bernard and Kate Baxter.How to obtain further informationThis paper is a summary of the full report “Vision RehabilitationServices: what is the evidence” by Parvaneh Rabiee, Gillian Parker,Sylvia Bernard and Kate Baxter which is downloadable frombit.ly/virehab and on the Pocklington websitewww.pocklington-trust.org.ukIn this publication, the terms ‘people who are sight impaired’,‘people with visual impairment’ and ‘people with sight loss’ areused interchangeably.www.pocklington-trust.org.uk Research Findings 467www.pocklington-trust.org.ukPier House90 Strand on the GreenLondonW4 3NNTel: 020 8995 0880Email: research@pocklington-trust.org.ukWeb: www.pocklington-trust.org.ukPublished by Thomas Pocklington TrustRegistered Charity No. 1113729Company Registered No. 53593369 781906 464639ISBN 978-1-906464-63-9Thomas Pocklington Trust

Vision rehabilitation services:what is the evidence? Final report.

Vision rehabilitation services : what is the evidence? Final report.

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Vision rehabilitation services : what is the evidence? Final report.

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