Visual Impairment Co-ordination Service

Royal London Hospital

a service provided by the Metropolitan Society for the Blind

Tower Hamlets

• Highest rate of child poverty in London.

• Second most deprived borough in London. 

• Third most deprived borough nationally.

• 79% of children live in low income families.

Tower Hamlets

• High levels of unemployment

• Disadvantage in income, health, housing and crime

• One of the highest population densities in London

Ethnicity

• Over half of Tower Hamlets’ population are from non-white British ethnic groups. A third of these are Bangladeshi, of whom over a third are 15 years or less old.

• Fifty six per cent of the population in Tower Hamlets belong to an ethnic group other than white British.

• Thirty per cent are Bangladeshi. • Eight per cent are from other white backgrounds.

Poverty and families with disabled children

• It costs three times as much to bring up a disabled child compared with other children, and childcare costs for disabled children are up to five times as much. Families with disabled children are both 50 per cent more likely to be in debt than other families, and 50 percent less likely to be able to afford essentials like new clothes or school outings.

My role in the eye clinicfrom January 2009

• Providing information about registration and eye problems

• Emotional support

• Signposting or formally referring people to other organisations

Visitors to VIC service

• 68 children (including return visits)

• Some families have more than one disabled child

• Follow up work varies in volume considerably

• Also enquiries by phone or email

Ethnicity of clients - majority

• Bangladeshi

• White British

• Indian

• Pakistani

Ethnicity of clients - minority

• Black Caribbean

• Mixed race – White and Black Caribbean

• Black African

• Turkish

• Greek

• Gipsy/Traveller (from Ireland)

• Mixed race - White and Asian

Accepting referrals

• Anyone can refer

• Most referrals come from eye clinic staff

• A minority refer themselves

• Need for me to explain my role - so people have realistic expectations

• Never closing ‘cases’ – people often re-refer themselves from hospital corridor.

Presenting problems

• Disability Living Allowance and Carer’s Allowance

• Benefits and concessions, including the Blue badge scheme

• Housing

• ‘Visual impairment’ issues

• And lots more!

Providing information about registration

• What registration involves

• Benefits and concessions

• Sending CVI to local education authority and sometimes making new referral

• Explaining about sources of help for families and children with visual impairments

Providing information about eye problems

• Helping families to ask professionals the right questions

• Handing people leaflets - where they exist and are appropriate!

• Putting people in touch with syndrome support groups (often via Contact a Family)

• Clarifying what other people have said or written about their child

Visual impairment – practical issues to resolve

• Support at school

• Bullying or “uninformed behaviour” – by teachers and school staff

• Computers and software

• Transition to adult services and support

• Large print books to take home

• Re-registration – to get more benefits

Emotional support

• Listening to parental concerns • Exploring the idea that someone is to

blame for the child’s disability – such as cousin marriage

• Cultural aspects of disability and positive images

• Genetic conditions including life-limiting conditions – parents, siblings and wider family

Low vision

• Providing basic low vision sessions to families

• Explaining about hand-held magnifiers, other low vision aids and equipment

• Promoting model of low vision passports for PCT to adopt

Implications of visual impairment

for children and families• Communication

• Motivation

• Learning and development

• Co-ordinating other senses

• Balance, movement and safety

• Sense of self

Visual impairment and other impairments

• Hearing impairment

• Physical impairments

• Learning difficulties

• Health problems, including complex syndromes

Signposting or formally referring people to other organisations

• Local statutory services, including Visual Impairment Services

• Action for Blind People – housing support

• National Blind Children’s Society – grants for IT, education advocacy, benefits

• RNIB – equipment, training, Parents Place website

Children’s pressure group – to improve local services

• Consultant ophthalmologist

• Orthoptist

• Head of Visual Impairment Service

• Commissioner on Eye Care

• Advice and Information Worker

• Manager of Children with Disabilities Team

Working to establish low vision passports – hand-held documentRecording the child’s eye condition

• Visual acuity and glasses

• Visual fields

• lighting

• How to help child use vision better

• Adaptations – human and environmental

Working with other organisations

• Tower Hamlets Visual Impairment Service – providing a link with hospital

• Other Visual Impairment Services

• Children with disabilities team

• Adult learning disability team

• Adult sensory impairment team – especially on transition

• PCT

There is so much to do.

“It’s all about helping children reach their potential”.