University of Edinburgh
 

Visual Impairment Scotland Research

What do Doctors know about the Benefits of Blind and Partial Sight Registration?

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

In Scotland there is a great disparity between the estimated number of eligible children with visual impairment (over 2000) (1) and the actual number of children on the blind and partial sight register (only 828)2. If parents of children were made aware of the many benefits of registration then use of the system is likely to increase.

The purpose of this study was threefold:

  • To find out what all the current benefits of registration are and create a leaflet that describes these benefits.
  • Describe the knowledge of benefits of registration amongst health professionals.
  • Describe what health professionals perceive to be the main benefits of registration to children and families

This study explores issues raised in two recent Scottish Executive3,4 reports and implements recommendations made in them.

Methods

A leaflet was developed that describes all the benefits of childhood blind and partial sight registration in Scotland. There was no previously existing single source of information.

All ophthalmologists (32) and community paediatricians (16) with visually impaired children on their caseloads were sent a structured history document to complete and return.

The return rate was 81% (26/32) from ophthalmologists and 94% (15/16) from community paediatricians. Every health board in Scotland was represented by at least one ophthalmologist and one community paediatrician. Two of the returned ophthalmologist’s questionnaires were blank because they did not have a paediatric caseload.

Results

Knowledge of current benefits

Most respondents (26/39) were aware of only half or less of the current benefits of registration. Knowledge was poorest amongst ophthalmologists with one third (8/24) claiming they were aware of ‘hardly any’ or ‘none’ of the current benefits of registration compared to only 2 of the 15 paediatricians.

Perceived benefits to children and families of registration

Nearly all respondents (33/39) felt that children and their parents gain ‘only a few’ or ‘no’ benefits from becoming registered. The two most common ‘benefits’ to visually impaired children and their families of registration stated by respondents was access to special education (17/39) and financial benefits (15/24).

Since December 1999 in Scotland children on the blind and partial sight register have been able to access fee bus, rail, ferry and underground transport within Scotland. This is one of the most attractive benefits of becoming registered. Out of the 39 health professionals who responded only 3 mentioned free travel as a benefit.

Usefulness of the new benefits information leaflet

All health professionals felt the new benefits leaflet would be a useful framework for discussing registration and would encourage parents to have their child registered.

Conclusions

Knowledge of the benefits of registration is poor amongst the health professional in a key position to promote the system. Paediatricians knew more about the benefits of registration than ophthalmologists and were more convinced that children and families might actually benefit.

If health professionals are more knowledgeable of the concessions available and personally convinced of the benefits of registration to children and their families then rates of registration are likely to increase. This will in turn lead to a more comprehensive register.

Interestingly most health professionals in this study were under the misapprehension that access to special education and financial benefits automatically accrue from registration when in reality they do not. Very few social work services formally notify education and share information when a child is registered. With regard to financial benefits despite registration families are still required to go through the challenging process of applying separately for disability living allowance.

A new brief but comprehensive leaflet explaining the benefits of registration has been developed which is considered by health professionals to be a useful means for discussing and encouraging registration. An important finding was that the current benefits available are more suited to children with ocular aetiology than cerebral visual impairment and additional disabilities.

Recommendations

Efforts should be made to promote the benefits of registration amongst health professionals, parents and children. Development of guidelines that involve paediatricians, nursing staff and orthoptists in promoting registration and identifying eligible children will further encourage use of the system.

Broadening the current portfolio of benefits to meet the needs of children with cerebral visual impairment will make the system more relevant to this large group of children. Ideally access to special education and financial benefits should become an automatic sequel to registration.

References

1. Walker E, Tobin M, Mc Kennel A. Blind and partially sighted children in Britain: the RNIB survey Vol 2 London: HMSO 1992,
2. Social Work Statistics Release, Registered Blind and Partially Sighted Persons, Scotland 2001,
3. Certification and Registration Working Group Social Work Services for People with a Sensory Impairment The Scottish Office: May 2001
4. Social Work Inspectorate ‘Sensing Progress’, Social Work Services for People with a Sensory Impairment The Scottish Office: September 1999

John Ravenscroft
Manager
VI Scotland, SSC