No blind child can wait

The RSBC is a national charity supporting blind and partially sighted young people and their families. OT  speaks to its CEO, Dr Tom Pey

RSBC members playing instruments

Tell us about the work the RSBC does?

The Royal Society for Blind Children (RSBC) exists so that no child in the UK will have to grow up to be poor or lonely just because they are blind. It is an appalling fact that if an individual loses their sight as a child, they have a 90% risk of never working in their life, and a 70% risk of living with anxiety or depression as adults.

This situation persists despite the best efforts of the Government and the charity sector. The RSBC tackles the problem by working with the parents and the child to make sure that the young person not only has the skills to succeed in life, but also the emotional resilience and motivation to keep going when times get tough.

RSBC was established in January this year following a merger between two charities – how did the merger come about, and what are its benefits?

As independent charities, the Royal London Society for Blind People (RLSB) and the Royal Blind Society (RBsoc) shared similar values and ambitions, as well as a growing frustration that rising numbers of blind and partially sighted children in the UK continue to grow up to be poor and lonely just because they are blind.

The single most important driver for the two organisations to merge and become RSBC was that we share a strong determination to counter this unfairness. We also share a passion to make a real difference.

Our shared strategy – “No blind child can wait” – set out our goal of reaching 11,000 children by 2020. It demanded that RLSB and RBsoc started to work in tandem to build a national presence and drive up income.

Prior to the merger, we had to consider whether combined we could deliver a more effective charity that beneficiaries and donors would want to engage with.

Additionally, we also considered whether or not it would be financially and legally viable, and if it would give us the necessary infrastructure to deliver our services.

What steps are being taken to achieve the charity’s goals?

When we started out we were helping 150 young people, and we are now in a position to support 1700.  

Over the next three years, we have ambitious plans to roll-out a Family Support Service across England and Wales, as well as offer more support and advice digitally.

We also want to work with professionals, such as optometrists, to ensure that they have the most up-to-date information and contacts at their fingertips. This will ensure that they can support their patients and help them deal with the awful trauma that is childhood vision impairment.

Will we make it? We are working very hard to do so, and what we can promise is that we will not rest until we have achieved our goal.

What campaign is the RSBC currently focusing on?

We want every optometrist in the UK and everyone associated with monitoring and diagnosing paediatric sight loss to understand that, as things stand, a diagnosis of vision impairment means that the child is almost certainly condemned to fail in life. To ensure that this awful situation no longer prevails, we want to get all health and social care professionals to work together as a unit. This would lead to significant improvements both on the ground and for the affected family.

What are the issues affecting the work of the RSBC right now?

The biggest issue facing all of us is that, although we understand on a human level the impact of paediatric sight loss on the child and their family, we currently don’t have the referral mechanisms that permit us to work as a team.

RSBC wants to work closely with optometrists to establish safe and compliant referral pathways so that together we can make a real difference. This can be achieved by optometrists during the sight test, and the RSBC guiding the family through the challenges that will take place as the young person’s sight changes over time.

A young girl playing basketball

Helping parents is one of the RSBC’s top priorities – what are the methods you use to do this and why?

The psychological development of a vision impaired child and the eventual success of that child’s life is very heavily influenced by how their parents work within and outside the family unit. Failure to put parents first will therefore seriously diminish the opportunities for the child to flourish as an adult. That is why our national Family Support Service is a vital component of ensuring that no child in the UK will grow up to be poor or lonely just because they are blind.

What is the most common issue raised by parents when having a child diagnosed sight loss?

There have been many papers written on this topic and all agree on one thing. Almost without exception, the process of conveying the diagnosis and prognosis to parents causes confusion, anger and a sense of hopelessness.

Clearly, a serious diagnosis such as vision impairment is going to be very distressing. With hindsight, parents often say they wish they’d had someone with them who could hold their hand through the process and be their friend in the weeks and months thereafter. For this to be effective, parents must know about the service and subsequently trust the person who accompanies them.

For many parents, the first time they know something is wrong is when they find out through their optometrist. With this in mind, optometrists could build on this relationship and refer parents to a family support service, such as the one we provide.

What are the types of skills that you can offer blind children and young people to help them find work opportunities?

We do this through our Employability Programme, which is a six-week tailored series of workshops and one-to-one sessions to prepare young people for work. Our experts work closely with their clients to identify their skill sets, prepare CVs and explore interview techniques. We also source work placements wherever possible and offer guidance to prospective employers about how best to support a vision impaired employee. In addition, we also assess the client’s access requirements and can test out all the latest desktop, assistive and navigational technologies to get them on a level playing field. Our ultimate goal throughout the process is to help our service users grow in confidence so that they can go on to achieve their career ambitions.  

What are the charity’s ambitions for the next 12 months and then five years?

Indoor navigation is the new frontier for vision impaired young people. The young people we work with tell us that they want to go to the same places as their sighted friends, hang out with them and simply enjoy their youth. Working with an internationally renowned digital design studio, Ustwo, and benefiting from a generous grant from Google, we have developed an indoor navigation system called Wayfindr.

The International Telecommunications Union has just published the first-ever audio-based navigation standard, which will be unveiled in 169 countries across the world. This is an example of where the dreams and hopes of a few vision impaired young people who told us how they wanted to change the world, have the power to do so for every blind person on the planet.

Over the next two to three years,, a subsidiary of RSBC, will work hard to make sure that their dream is delivered. This together with other life-changing ideas shared with us by vision impaired young people, will form an important part of our work.

Visit the RSBC’s website for more information about the charity’s work.

Image credit: Alex Brenner