Charity that helps families seeking a medical diagnosis for their children receives National Lottery support

For families of children and young people living with a special need or disability, knowing where to turn and where to seek help and support can sometimes be difficult. But for those parents desperately seeking a diagnosis for their child’s health condition, the confusion and sense of powerlessness can make the situation feel almost impossible.

Brentwood-based charity Special Needs And Parents Ltd (SNAP) is a charity for families in Essex with children and young people who have any special need or disability, including those who don’t have a diagnosis.

The charity is now looking to support more families and children in this position after receiving more than £372,000 for over 5 years from The National Lottery Community Fund, the largest funder of community activity in the UK. The funding will be used to support its Strengthening and Empowering Parents project, which provides comprehensive advice and guidance for parents and carers.

This includes face-to-face advice sessions, a dedicated helpline, and informal support during play activities. The helpline has already become a lifeline for many families, particularly as a result of the COVID-19 pandemic, with the number of calls and emails received growing from 6,000 between 2018 and 2019, to almost 8,000 between 2020-2021.

By having an open-door policy, the charity soon became a solace for those families struggling to find answers to their child’s health needs. Karen Boath, Director of Family Services at SNAP, said: “Having an open-door policy is so important because the process of getting a diagnosis can take years. In the meantime, families are left with a limited understanding of their child’s needs and how best to support as well as their own difficult emotions such as confusion, denial, and grief.

“Without a diagnosis, families are unable to access many existing support services and these services are often fragmented, short-lived or limited to a single diagnosis, aspect or condition. What’s more, these families struggle to use mainstream groups as they often do not provide the right environment, provisions or knowledge to accommodate their child’s needs or behaviours, which can leave them feeling very isolated.”

SNAP, which helps families who have children aged 0-25, was founded in 1994 by eight local families who were anxious about the lack of relevant support and signposting in Essex for people in their position. Services being offered from the charity’s specialist centre in Warley, Brentwood now include a specialist library, an online directory, talks and workshops on specific medical conditions, music therapy, pre-school sessions, after school clubs, and popular holiday clubs. It’s dedicated Information Network also updates over 2,000 families on a fortnightly basis through targeted e-mails containing relevant training opportunities, performances, events and useful articles.

The support provided to parents doesn’t just end at an early age either, with parents often seeking the advice of SNAP when it comes to big changes in their child’s life, which makes the National Lottery funding and the continuation of SNAP all the more important.

Karen said: “Each new transition, such as starting school or puberty, has its own challenges. As a result, families will often get back in touch with SNAP for support around new challenges as they arise.”

Sara Clifton, Statutory and Trusts Manager at SNAP, said “Thank you to all the National Lottery players who have made a huge difference to our parents and carers. You have helped us continue to provide vital remote support, advice and information throughout the pandemic. Your support has ensured that SNAP families have the help they need to get through this difficult period. We cannot thank you enough!”

SNAP is just one of 24 projects in Essex to receive a share of £2.1m from the National Lottery Community Fund over the last three months.* Across the East of England, over £6 million was awarded to community projects and charities, with a grand total of almost £65 million awarded to over 1,700 community groups across England over the period.

Other projects in Essex to receive funding over the last three months* include The Peaceful Place Ltd in Basildon, which received almost £10,000 to help with its work supporting those with early onset dementia, and ATF Southend, which received a grant of over £226,000 to support its work with disadvantaged young people.

Helen Bushell, Senior Head of Regional Funding for London, South East and East of England at The National Lottery Community Fund, said: “This vital funding is having a significant impact on people’s lives and, in the case of Special Needs and Parents Ltd (SNAP), has helped to provide a vital source of information, support and comfort to parents with children living with disabilities. Thanks to National Lottery players, projects like this can continue to make a real difference to those in need.”

The National Lottery Community Fund distributes money raised by National Lottery players for good causes. Thanks to National Lottery players, last year we awarded over half a billion pounds (£588.2 million) of life-changing funding to communities across the UK. Over eight in ten (83%) of our grants are for under £10,000 – going to grassroots groups and charities across the UK that are bringing to life amazing ideas that matter to their communities.

To find out more visit www.TNLCommunityFund.org.uk