Visual Impairment Scotland Research

Do the agencies that support children with Visual Impairment talk to each other?

A J Blaikie, L Middleton, J Ravenscroft, L Cresswell, M Buultjens, GN Dutton

The 7th International Conference on Low Vision Activity and Participation
July 2002, Göteborg, Sweden

Purpose and Background

Certification and Registration should allow children with visual impairment to access benefits and services from the four main agencies (Education, Social Work, Paediatrics and Ophthalmology) that make up the support team. Many parents are however unaware of receiving any benefits as a result of registration1,2. In developed countries 80-90% of childhood visual impairment is evident within the first year of life3. In Scotland however over 60% of new blind and partial sight registrations occur after the age of 5 years4. Many registrations are therefore occurring very late. There is good evidence that early intervention can improve both visual function and attainment of other developmental milestones in children with visual impairment5.

For certification and registration to promptly and effectively passport benefits and services to children the multi-agency support team needs to work together, communicate and share information. The purpose of this study is to describe the communication links between the multi-agency support team in Scotland.

Methods

All ophthalmologists (32) and community paediatricians (16) with children with visual impairment on their caseloads were sent a structured history document to complete and return. The history document addressed recognised areas of concern that have been previously highlighted in two recent Scottish Executive reports 2,6. The return rate was 81% (26/32) from ophthalmologists (Two of the returned ophthalmologist’s questionnaires were blank) and 94% (15/16) from community paediatricians. Every health board in Scotland was represented.

Results

Ophthalmologist’s responses
Most ophthalmologists (19/24) feel the BP1 form (the Scottish certification document) is not an effective means to communicate information to social work departments.

Half the ophthalmologists (12/24) independently inform special education of the existence of a new child with visual impairment. Just under half (11/24) independently inform community paediatrics.
Most ophthalmologists (19/25) are under the misapprehension that special education services are routinely informed by social work of a child with visual impairment on receipt of a BP1 form.

Community paediatrician’s responses
All community paediatricians feel that it is important that children with visual impairment are referred to their service as soon as possible after the impairment is diagnosed however most (9/15) felt that half or less of children are referred at an early enough stage to prevent avoidable developmental delay.

Only one community paediatrician is notified routinely by their local Social Work Department of new children with visual impairment. Just over half (8/15) of the paediatricians are routinely informed by their local Special Education Service.

All community paediatricians feel that it would be helpful if these agencies shared information with them as nearly all paediatricians (13/15) consider there to be children with visual impairment missing from their caseload who would benefit from their service..

Conclusions

The communication links between the agencies that care for children with visual impairment in Scotland are fragmented and poorly formalised. This leads to delayed and haphazard service delivery.

It is likely that there are many children in Scotland with avoidable visual impairment and developmental delay purely due to poor communication links.

Recommendations

Review the registration form (BP1)
The format, contents and dissemination of the BP1 form needs reviewed to facilitate its completion within the eye department and improve its function as a means of ‘transporting’ information to the multi-agency team.

Hold information electronically and centrally
Completed BP1 forms should be forwarded to an independent national coordinating body with the responsibility for informing all the relevant support agencies promptly and coherently of the child’s medical, social and educational status. Information from the BP1 form should be held electronically both centrally and locally to act both as a service planning and visual impairment research tool as recommended in a recent Scottish Executive report2.

Develop multi-agency community-based vision teams
We recommend development of multi-agency community-based vision teams to aid communication and sharing of information to allow delivery of more coherent, prompt and focussed care packages.

References:
1. Walker E, Tobin M, Mc Kennel A. Blind and partially sighted children in Britain: the RNIB survey Vol2 London:HMSO1992,
2. Certification and Registration Working Group, Social Work Services for People with a Sensory Impairment, The Scottish Office: May 2001
3. Blohme J, Tornqvist K.Visual impairment in Swedish children. II. Etiological factors. Acta Ophthalmol Scand 1997 Apr;75(2):199-205,
4. Social Work Statistics Release, Registered Blind and Partially Sighted Persons, Scotland 2001,
5. Sonksen PM, Petrie A, Drew KJ. Promotion of visual development of severely visually impaired babies: evaluation of a developmentally based programme. Dev Med Child Neurol 1991 Apr;33(4):320-35,
6. Social Work Inspectorate ‘Sensing Progress’, Social Work Services for People with a Sensory Impairment, The Scottish Office: September 1999

VI Scotland
Scottish Sensory Centre
Moray House School of Education
University of Edinburgh
Holyrood Road
Edinburgh
EH8 8AQ
Telephone: 0131 651 6078
Fax: 0131 6501 6502
E-mail: viscotland@ed.ac.uk
Web: www.viscotland.org.uk

John Ravenscroft
Manager
VI Scotland, SSC