Visual Impairment Scotland Report
Chapter 1 Background, Origins and Aims
Childhood visual impairment has far-reaching effects throughout life.
In Scotland the actual number of children with visual impairment is not known.
The true number of children with visual impairment in Scotland is significantly more than the number on the official blind and partial sight register.
It is important to know the real number of children with visual impairment in order to appropriately plan services.
The official register was developed to meet the needs of adults of working age who had fallen out of employment because of sight loss. Aspects of the current registration system do not therefore meet the needs of children and their education.
Several Scandinavian countries maintain comprehensive registers that are used for service planning and visual impairment research.
Based on these needs, an application was made to the Scottish NHS Innovations Fund. A three-year grant was awarded to pilot a new notification system for children with visual impairment throughout all areas of Scotland commencing in late 1999. The project was called 'Visual Impairment Scotland' and will be referred to in the rest of this report as VIS.
The VIS Project has two complementary aims:
1. To pilot a comprehensive notification system for children with visual impairment.
2 . To develop a tailored information and support service.
The effects of childhood visual impairment
Childhood visual impairment has far reaching effects throughout life1-5. It can impact upon a child's development, education, employment and emotional and social prospects. It has similar wide ranging effects upon the immediate family6,7. Beyond the affected child and family, visual impairment creates financial implications for society, impacting upon the provision of educational, social and health services8-10.
Accurate and current knowledge of the number, location and type of child to be served is required in order to offer integrated, efficient and effective services and support to children and their families. Such knowledge will also aid research into prevention, diagnosis and treatment of conditions causing visual impairment.
How many children are there with significant visual impairment in Scotland?
There is a great disparity between the estimated number of children with visual impairment in Scotland (over 2,00011) and the actual number on the official blind and partial sight register (only 82812). Of the children on the official register only 20% have additional disabilities compared to an expected 60%. (The official register is similarly underreporting children with hearing impairment in addition to visual impairment. Only 1.7% of children on the register are recognised to have dual sensory loss compared to an expected 6.2%). The register is therefore not just failing to identify the majority of children with significant visual impairment, it is also failing to identify children with additional motor, intellectual and sensory impairments.
In developed countries 80 to 90% of childhood visual impairment is evident within the first two years of life 13. In Scotland, however, 74% of new blind and partial sight registrations in children occur after the age of 5 years. It is clear that even when the register does identify such children, it does so late.
Is it important to identify children with visual impairment early?
Evidence from a range of studies14-19 suggests that early and prompt delivery of the services of a co-ordinated cross-disciplinary habilitation team is necessary to aid improvement in visual function and to optimise the developmental progress of children with visual impairment.
Although it seems clear that delay in receiving appropriate and co-ordinated services leads to sub-optimal development, it is not known if children fail to receive these services due to the delay between the onset of visual impairment and notification to the official registration system.
Incomplete and inaccurate statistics
The official blind and partial sight register does not store detailed information on the degree, cause, timing or site of visual impairment and provides no record of additional medical conditions such as cerebral palsy, epilepsy or autistic-spectrum disorder.
There has also been a recent drop in the total number of persons registered despite new registrations increasing. This is because many Local Authorities have started removing individuals who are deceased from the register, but who were previously in the official statistics. Some local authorities are also unable to make complete returns.
For these reasons the Scottish Executive states 'care should be taken when interpreting the figures' 12
Other sources of information
There are two other Scottish databases concerning children with visual impairment:
- The Educational record of Needs list
- The Health Paediatric Special Needs System
Although these lists were not specifically developed to record how many children there are with visual impairment they can be used as additional means of detection. The most recent information from the Education Minister states that there are 429 children in Scotland with a record of needs whose main cause of difficulty in learning is visual impairment20. At present there are estimated to be 944 children with visual impairment on the Health Special Needs System21. This system is however not national as currently only 9 of Scotland's 16 Health Boards contribute to it.
Why is it important to know how many children there are with visual impairment?
Children with visual impairment require an integrated and tailored service provision that involves:
- Social work
- Voluntary organisations
To plan and develop such a service requires accurate and current knowledge of the number, distribution and categories of children to be served.
None of the current registration systems in Scotland provides this information.
Origins of the official BP1 registration system in Scotland
The National Assistance Act of Parliament introduced Blind and Partial Sight Registration in 1948. The original register was developed in response to the needs of adults of working age who had fallen out of employment because of sight loss. The system was not devised for the needs of children and has changed little since inception. As a consequence many aspects of the current registration system are not appropriate for children and their educational needs. This was highlighted in the recent Scottish Executive Report of the Certification and Registration Working Group22.
The process of blind and partial sight registration in Scotland
Only a consultant ophthalmologist can 'certify' that a child is visually impaired and meets the criteria of being 'blind' or 'partial sighted'. Blindness is defined by statute as 'to be so blind as to be unable to do any work for which eyesight is essential'23. Partial sight is described as 'to be substantially and permanently handicapped by defective vision'.
Many children with visually impairing eye disease present to the hospital ophthalmology services within their first year of life. Referral may occur in response to:
- Parental anxiety about behaviour suggestive of impaired vision
- Peri-natal screening
- Conditions in which visual impairment is commonly associated
Once a diagnosis is made, visual impairment confirmed and prognosis determined, decisions regarding registration must be made. The consultant ophthalmologist decides the most suitable stage in the management of the child to raise the issue of registration. This is rarely at the time of initial diagnosis. The consultant must also consider whether the child fulfils the criteria for blind or partial sight registration. After discussing the benefits of registration, parental consent is gained to carry out certification.
Once a child is certified as being visually impaired the completed certification form is sent to the local social work department or visual impairment society. The details of the child are then added to the local list (the register) and the child is then 'registered'. The local authority is then responsible for assessing the child's needs and providing services to meet these needs.
Registration in Other Countries - the Scandinavian Perspective
Some of the most comprehensive information on the epidemiology of childhood visual impairment has been published by the NORDSYN group of researchers from Scandinavia. In particular Denmark has a long history of maintaining a comprehensive childhood visual impairment register and provides an excellent model to discuss.
A register of visually impaired children has been held in the National Eye Clinic Copenhagen for over 100 years. To ensure the register is comprehensive and effective as a planning and research tool the Danish Government conceded specific changes in the data protection laws. As a consequence it is the professional obligation of teachers, ophthalmologists and paediatricians to notify any child with visual impairment to the National Eye Clinic register. This represents a statutory form of notification that does not require explicit consent of parents or children. The threshold visual function for inclusion on the register is a best-corrected visual acuity equal to or worse than 6/18.
Denmark has one of the most accurate and comprehensive registers of childhood visual impairment in any developed country. The prevalence rate is currently 12.9 per 10,000 with over 50% of the children having an additional disability24. There are over 1,700 children on the register with approximately half of these children attending the eye clinic at least annually in the company of their parents and teacher for review of their sight impairing condition, visual function and low vision aid use.
The clinic is responsible for organising teaching courses and issues an annual copy of the eye clinic and register report to notifying colleagues. By maintaining these positive links with professionals who care for children with visual impairment the value of the register is reinforced and encourages further notifications. The Social Service Department funds the register.
The University Ophthalmology Department of Lund, Sweden holds a comprehensive register of children with visual impairment. The register is notified of all children with visual impairment attending low vision clinics throughout Sweden. The register is a complete and inclusive source of information of the true burden of childhood visual impairment. 60% of children on the Swedish register are recognised to have additional disabilities25. The prevalence of childhood visual impairment in Sweden is 13.1 per 10,00026. The inclusion criteria are the same as the Danish register. However, registration does not confer any automatic benefits to the child or family and the register is funded by local health sources.
Overall Benefit to the Nordic Countries: Service Planning and Research
The governments of the Nordic Countries use their respective registers as service planning tools. This has led to the provision of appropriate and more equitable educational, social and health services for children with visual impairment.
A great deal of important visual impairment research has also been performed using these comprehensive databases27,28. This research has made significant contributions to our understanding of specific visually impairing conditions and the effect of visual impairment on a child's development and general health.
Information and support services for children with visual impairment
There is a wide range of services and benefits available for children with visual impairment, but the delivery of such services is patchy, partly on account of lack of knowledge by children and their parents and carers of what is available29-31. There is therefore a requirement for a comprehensive information and support service.
Comprehensive and accurate information on the epidemiology of childhood visual impairment
There is also a need for a single source of comprehensive information on the epidemiology of childhood visual impairment that can be developed by combining elements of the current registration systems in Scotland, as well as ideas from Scandinavia.
Application to the Scottish NHS Innovations Fund
Based on these needs an application to the Scottish NHS Innovations Fund was made. A three-year grant was awarded to pilot a new notification system for children with visual impairment throughout all areas of Scotland commencing in late 1999. The project was called 'Visual Impairment Scotland' and will be referred to in the rest of this report as VIS.
The project has two complementary aims which are in addition to the current registration service.
To pilot a new and comprehensive notification system for children with visual impairment
This system aims to describe the cause and level of visual impairment as well as any additional disabilities. Where possible an educational profile for each child is also described.
To develop a tailored support and information service
The development of a support service is aimed to fulfil unmet need and to encourage and motivate parents and children to become involved in the VIS project. Elements of the support and information service which were to be developed include:
- A club for children with visual impairment called VISKIDS
- A safe and secure internet chat room for VISKIDS members
- Understandable medical information A telephone helpline for children and parents
- A web-based parents' discussion forum
- A website (http://www.viscotland.org.uk) to access all these services and to help achieve these aims
1.5 Study Population and Definitions
Our target population of 'children with significant visual impairment' includes any child under the age of 16 years who has:
- A best corrected binocular visual acuity equal to or worse than 6/18 (or equivalent) or
- Any form of visual field loss or
- An eye movement disorder which affects visual function32-34 or
- Any form of cognitive visual dysfunction35-38 due to disorders of the vision parts of the brain
These definitions represent thresholds that can be considered more relevant to the educational and developmental needs of children for inclusion in a childhood visual impairment register, compared to the current criteria for 'blind' or 'partial sight' registration.
The core team includes:
Ms Marianna Buultjens, Project Director
Mr John Ravenscroft, Service Manager
Dr Andrew Blaikie, Ophthalmology Research Fellow
Mr Ian Lancaster, Database and Website Officer
Mrs Yvonne Cairney, Receptionist and Secretary
There is an extended voluntary team that includes:
Dr Jim Chalmers, Consultant in Public Health, Information and Statistics Division, NHS Scotland
Dr Harry Campbell, Consultant in Public Health, University of Edinburgh Medical School
Dr Lyn Cresswell, Consultant Paediatrician, Royal Edinburgh Hospital for Sick Children
Professor Gordon Dutton, Consultant Ophthalmologist, Yorkhill Children's Hospital Glasgow
Dr Brian Fleck, Consultant Ophthalmologist, Lothian University Hospitals NHS Trust
Mrs Sarah Landale, Parent
Dr Caroline J MacEwen, Consultant Ophthalmologist, Tayside University Hospitals NHS Trust
Dr Anne O'Hare, Consultant Paediatrician, Royal Edinburgh Hospital for Sick Children
Ms Joyce Renton, Parent
Ms Grace Stuart, Parent Counsellor
Mr Danny Sweeney, Head of Sensory Impairment Social Services, North Ayrshire
Together, the above named individuals make up the ‘Visual Impairment Scotland Research Group’.