Eye Examinations in Special Schools SeeAbility’s Children in Focus Campaign Marek Karas Optometrist

SeeAbility SeeAbility is a UK charity supporting people with sight loss and multiple disabilities

Services Supported living services Residential services Outreach services Skill centres Advisory and training services

Advocacy Acts as a national advocate Peer advocacy network to promote eye care Training for health and social care staff on eye care, vision and VI Vision charter for organisations to sign up to committing to standards on eye tests, glasses and VI support. Adult eye care pathway

Adult pathway Higher prevalence of visual impairment in people with Learning Disability (1) Low uptake of eye examinations and other services. (2) Worked with professional bodies to create a enhanced pathway. (3) Designed to allow people with LD to access NHS sight tests in the same way as others.

Ophthalmic Services for Children (4) Neonatal examination Screening at age 4 to 5 years Screening at other ages Free NHS eye examination up to the age of 16 (19 if in full time education) by community optometrists.

Ophthalmic Services for Children (4) Targeted surveillance of high risk groups Sensorineural hearing impairment Neurodevelopmental impairments inc. Downs syndrome A family history of a childhood onset ophthalmic disorder e.g. retinoblastoma

Ophthalmic Services for Children (4) Neonatal examination Screening at age 4 to 5 years Screening at other ages Free NHS eye examination Targeted surveillance of high risk groups Hospital Eye Services

Ophthalmic Services for Children (4) Hospital Eye Services Offer of certification Input into the EHCP Recommendation is for multidisciplinary assessment Low Vision Assessment

Ophthalmic Services for Children (4) Neonatal examination Screening at age 4 to 5 years Screening at other ages Free NHS eye examination Targeted surveillance of high risk groups

Special Schools A school which is specifically organised to make special educational provision for pupils with SEN (5) 4,080 maintained and non maintained special schools in England (6) 101,475 pupils (6) Primary SEN listed: –8,795 had a profound and multiple learning difficulty, –24,735 had a severe learning difficulty and –22,490 had autistic spectrum disorder identified as their primary special educational need. –under 1% of pupils (750) had visual impairment listed as their primary special educational need (6)

Children with SEN Children with SEN are more likely to have refractive errors, ocular conditions and visual impairment than children without SEN

Children with SEN Estimated prevalence of visual impairment amongst children (0-19 years) with learning disabilities to be almost 1 in 18 (5.66%) in the UK. Estimated prevalence of these refractive errors were shortsightedness %, longsightedness % and astigmatism – 25.3 It was predicted that figures would rise by 0.5% each year over the next two decades.(1)

Children with SEN The estimated prevalence of visual impairment is 0.2% of the general population of children (7) Children with learning disabilities are 28 times more likely to have serious sight problems than other children.

Children in Special Schools “A clear vision, 2012” (8) 151 pupils in 5 special schools in Wales More than a third had never had a sight test 53% needed glasses (only 38% had them) 47% had at least one eye health issue

Children in Special Schools 200 pupils in special schools in Glasgow (9) 46% had refractive error that needed correction 12% had low vision or blindness (WHO criteria)

Aims of the campaign Assess current eye care services in special schools through a survey of special schools in England. Design and deliver an eye care service in a number of special schools. Evaluate that service and make recommendations for future service delivery.

Results of the survey 220 (13.6%) of the 1618 schools surveyed responded 19,122 pupils (203 schools) 74% said they were aware that pupils were at greater risk of sight problems 58% reported no vision screening

Establishing pilot sites Establish four pilot sites Gather a data set to build on “A Clear Vision” (8) Ethics from Cardiff University Principal investigator Maggie Woodhouse

Location of the Pilot Sites Persaid School- Epsom and St Hillier Village School- Central Middx. Hospital Moorcroft- Hillingdon Hospital Grangewood- Hillingdon Hospital

Aims of the work Prevalence of sight problems among pupils in special schools. Collect evidence on previous access to eye care among pupils in special schools Identify and correct sight problems among pupils in special schools, including referring to other services if needed. Test a model of service delivery

Key Elements of the service The service is delivered in the school. A joint optometric and orthoptic assessment of children starting school at 4 to 5 years old. Regular assessment of children throughout all other years at school. Provision of spectacle dispensing in the school free of charge. Co ordination with local hospital ophthalmology services and education services. Communication of results to parents, teaching staff and qualified teachers for visually impaired children (QTVI’s). A leavers report for pupils moving on from the school.

Pre visit Questionnaires Parents are sent a pre visit questionnaire Telephone follow up

Outputs Assessment of visual function Refraction Binocular status Examination for pathology Eye movements Glasses dispensed at the school Five key questions for CVI Explain it all

Five Key Questions

Referral to QTVI 3/5+ on Five Key Questions so full inventories need to be used Glasses prescribed Visual impairment

Results children seen (mean age 12.1 yrs range 3.9 years to 19.6 years. 36.5% of pupils had no history of eye care Of those seen by hospital eye service and discharged, 74.0% had not subsequently seen an optometrist. 33.6% needed glasses (10.9% for the first time)

Evaluation School questionnaire Focus groups Parents questionnaire Practitioner feedback

Referral to QTVI 3/5+ on Five Key Questions so full inventories need to be used Glasses prescribed Visual impairment

Conference on CVI Friday 26 th June 2015 Birmingham Conference: Survey:

Why are we doing this? Establish a data set Explore funding Catalyse change Build a consensus/platform for interested parties across England

References 1. Emerson, E. and J. Robertson, The estimated prevalence of visual impairment among people with learning disabilities in the UK. Improving Health and Lives: Learning Disabilities Observatory report for RNIB and SeeAbility, McCulloch, D., et al., Vision care requirements among intellectually disabled adults: a residence ‐ based pilot study. Journal of Intellectual Disability Research, (2): p LOC Support Unit. Community Eye Care Pathway for Adults and Young People with Learning Disabilities [cited /8/14]; Available from: pathway-for-adults-and-young-pe. 4.Mike Clarke on behalf of the Paediatric Subcommittee, Ophthalmic services for children, 2012, The Royal College of Ophthalmologists. 5.Department for Education and Department of Health, Special educational needs and disability code of practice: 0 to 25 years., 2014, Crown: London.

References 6.Health, D.f.E.a.D.o. Special Educational Needs in England SFR 26/2014: School Census: National Tables (Tables 10a and 11) [cited th February 2015 ]; Available from: needs-sen 7.Social Research Group. Key facts about vision impairment in children and young people [cited /3/2015]; Available from: 8.Woodhouse, J.M., et al., Ocular and visual status among children in special schools in Wales: the burden of unrecognised visual impairment. Archives of Disease in Childhood, Das, M., et al., Evidence that children with special needs all require visual assessment. Archives of Disease in Childhood, (11): p

Campaign Steering Group Paula Spinks-Chamberlain (SeeAbility’s Director of Advisory Services) Gordon Ilett (Optometrist and SeeAbility Trustee) Maggie Woodhouse (Senior Lecturer and Optometrist, Cardiff University) Kathryn Saunders (Subject Head - Optometry, University of Ulster) Rachel Pilling (Consultant Ophthalmologist, Bradford Teaching Hospitals NHS Foundation Trust) Jane Leitch (Consultant Paediatric Ophthalmologist, Epsom & St Helier NHS Trust) Annette Dillion (Clinical Specialist Orthoptist & Deputy Head Orthoptist Warrington and Halton NHS Foundation Trust Hospitals) alternating with Pamela Bowen (Orthoptist at Wrightington, Wigan & Leigh NHS Foundation Trust) Jennifer Browers – Dispensing Optician and Low Vision Practitioner Jim Barlow – retired NHS England Commissioner and Chair of NHS England Eye Health Steering Group Marek Karas (SeeAbility’s Clinical Lead – Optometry) Alister Riedl (SeeAbility’s Eye Care and Vision Development Officer – Children) Nathan Davies (SeeAbility’s Eye Care and Vision Development Officer – Impact and Evaluation)