After diagnosis, accessing relevant services is vital for your child, and this is especially true if your child is diagnosed at a young age or at a crucial stage in their education.
As the age of diagnosis is frequently in the teens, it is often GCSEs, A Levels, University and career choice which becomes the focus of a parents concern. However, a significant number of children are diagnosed at a much younger age, in particular when there is already a known history of RP in the family.
You may need assistance and support with educational issues. You may require advocacy when dealing with your child’s school or local education authority, advice on mobility and specialist equipment, or help when making decisions about specialist school versus mainstream school for your child.
Local authorities can also provide financial and practical assistance with educational equipment, for example laptops, audio equipment and support workers may be provided.
Your hospital’s Eye Clinic Liaison Officer (ECLO) can help you with advice and by making referrals to the services you need. Also, you can use this RP Pathway website to give your child’s teachers, doctors, support workers, family and friends information that will help them help your child.
In terms of benefits, you may be entitled to receive a Disability Living Allowance (DLA) or to claim carers allowance. DLA is a non means tested benefit designed to help with the additional costs of living with a disability and your Eye Clinic Liaison Officer or local association for visually impaired people can help you to make an application, it is always best to take advice – the process is bureaucratic and is fraught with the potential for errors, and completing the form incorrectly can lead to delays in obtaining allowances.
Some of the organisations you should be able to turn to for help include your Local Council*, Local Education Authority*, the National Blind Childrens’ Society (NBCS), and the Royal National Institute of the Blind.
For young people with advanced RP the Guide Dogs Association (www.guidedogs.org.uk) are a great source for mobility advise and information, and indeed guide dogs and buddy dogs are now available for younger children.
* search the internet or your local telephone directory for contact details.