Alison Worsley and Jemma South, Platform Leads at National Deaf Children’s Society, have given an update about changes and developments in the way that NDCS is supporting children and their families to help set them up for life. 

You can read the briefing below and if you would like more information abouthe NDCS strategy and the new roles, please contact Alison and Jemma via This email address is being protected from spambots. You need JavaScript enabled to view it.

At the National Deaf Children’s Society, we’re dedicated to supporting deaf children and their families, and deaf children are at the heart of everything we do, no matter their level of hearing loss, how they communicate, where they go to school, or which technology they use. We know that we can’t do this alone. Partnerships with specialist services and professionals is at the heart of our work.

In March 2023, we launched our new strategy, Every Moment Counts. It aims to support deaf children and their families during those critical early years to help set them up for life. As we all know, the early years are a crucial time for all children, but especially for deaf children, given the impact that deafness can have on language development, communication and social skills.

Our new strategy is also part of our ongoing work to embed the Family Centred Early Intervention (FCEI) principles into our work.

Our strategy is now moving ahead at full steam and this year we’re excited to have created new roles within the organisation that will help us deliver our strategic ambitions in two key areas: audiology and community.

This post provides information about these two new roles and how we hope that they will support and complement the work already being done by other specialist professionals towards our shared goal of making sure every deaf child has the best possible start in life.

Early Intervention Advice and Guidance Officers (EIAGOs)

As colleagues will know, NHS England have been delivering a Paediatric Hearing Services Improvement Programme. Led by the Office of the Chief Scientific Officer, this has been reviewing all paediatric audiology services across England and working with Integrated Care Boards (ICBs) to assess if records need to be reviewed and children recalled.

In a number of cases, this has led to deaf children being identified much later than would otherwise have been the case. In response, NHS England have funded the creation of a new EIAGO role.

Our experience tells us though that families whose children have experienced delayed identification of deafness may need additional emotional support — both to understand the identification of deafness and to come to terms with the circumstances in which it occurred. We anticipate that these families will need significant and tailored support, that can be challenging to meet without additional resourcing.

Our standard support offer relies on families proactively reaching out to us. Our new EIAGOs work on a different model where families are referred directly to us by audiology services. We will work with audiology services undergoing a review and recall process to establish new referral pathways and data sharing agreements. At a time when families may be especially struggling, this approach means that families don’t have to worry about remembering to contact us to access support that may help them.  

Our aim is that EIAGOs will support the work of audiologists by helping to reduce DNA/WNB rates. EIAGOs will also offer emotional support to families, advocate for their rights and help ensure access to appropriate services. EIAGOs will also support families with specific issues, such as attending harm review meetings, where this is wanted.

NHS England is sharing information with us about the services across England that are recalling children and would like our support. In each area, we have been working with regional leads, ICBs and audiology services to ensure that families affected can receive support from EIAGOs if they would like to.

We are also working to make sure we engage with specialist education services for deaf children and with Children’s Hearing Services Working Groups (CHSWGs) in review and recall areas. Collaborative working with professionals, including Teachers of the Deaf, to ensure coordinated support will be key to the role of EIAGOs. As our EIAGO work is being developed at pace, we have not always got this right in some of the early areas, but we are working to learn the lessons, both from this and from what families tell us.

Community Connectors

Ultimately, we want to make sure that all deaf children and young people, no matter their level of hearing loss, are reaching their potential and are not left behind. In developing our new strategy, we knew we needed to significantly change the way we work to achieve this, reaching and supporting all deaf children as soon as their deafness is identified.

That’s why, over the past year, we’ve been developing a new community transformation model that is strongly influenced by the FCEI principles.

In particular, we know from these principles that parents are the biggest influence on children in the early years.  We also know that peer connections are essential, with deaf children more likely to thrive in better connected communities.

This is why we have created a new paid Community Connector role. Our Community Connectors are parent leaders at the heart of their communities. They will seek to form new connections and strengthen existing ones between families, health and sensory support professionals, such as Teachers of the Deaf, so that deaf children can access a wide range of support to suit their individual needs.

Depending on family needs and the local context, they will also provide support to families from the point of identification. This might be through cups of tea in the home, peer support, resources and access to deaf role models. They will also connect with volunteer-led local groups, who offer a safe space for families to come together for friendship, support and fun. As Teachers of the Deaf will know, this early support and the chance to hear from other parents who have already walked in the same shoes can be especially impactful for families that are new to deafness.

A shift to a more community-based approach allows us to adapt to the different needs of each community. It means we can provide holistic, tailored support exactly when families need it, whilst also supporting the wider ecosystem of support to families.

We have piloted our new Community Connectors in 8 areas in the South East and South West of England. We are currently expanding this with another 20 across the North West and North East of England over the next few months, with a view to then rolling out to Scotland and Wales next year, followed by the rest of the UK.

The work of Community Connectors will vary. They will use their lived experience of deafness and work to core NDCS values to explore how referral pathways and support can be strengthened in each area. Community Connectors will look to build on what’s already in place and also look to explore and coproduce solutions that meet the needs of local families. Key to the success of their work will be the partnerships they develop within their communities and particularly with specialist sensory services, Teachers of the Deaf, audiologists and local deaf centres and clubs.  

Community Connectors will also work to bridge our community and national work, referring and escalating issues within our organisation, and helping to inform any local, regional and/or national work we do. Once fully rolled out, they will attend CHSWGs as a local NDCS representative, supporting parent reps and voices within the group.

With the development of our Community Connectors, the work of our Local Influencing team will change – but we will still retain the capacity to support professionals with any wider issues or concerns where necessary (for example, proposed closures of specialist provision or local SEND reviews). We encourage professionals to discuss with us any concerns they may have and, as now, we will treat any information confidentially or sensitively if needed.  

We are moving carefully to ensure that this transformation is sustainable and that lessons are learnt as we move forward – but our hope is that every area across the UK will eventually have a Community Connector in place.

And we’re already seeing early signs of real impact.

Amy Collins is a Community Connector in Wiltshire. She said “Being a parent of a deaf child myself, it’s an incredible opportunity to be able to walk alongside families as they navigate their own journeys.

“In the few short weeks I’ve been out in the community, I’ve been supporting and connecting families across the county, organising drop-in sessions for parents and collaborating with local organisations and charities to build a solid network for all families with a deaf child.

“The feedback so far has been wonderful, and families are really feeling the benefit of having someone to speak to who has “been there before”.

Another Community Connector, Kayleigh Greenwood from Hampshire, has highlighted the value of working closely with Teachers of the Deaf in her area. She said: “I had a brilliant conversation with our local Teacher of the Deaf at a recent school visit. We explored how I can support families in the community. We exchanged ideas, shared resources, and agreed to keep in touch so we can make sure any families who might benefit from extra support in our area know where to come. It’s always energising to see collaboration in action.”

Conclusion

We believe our partnership working with services and Teachers of the Deaf, and our passion, drive and determination have helped us break down many barriers for deaf children over the years. Our new roles will help us go further to make sure that every deaf child gets the support they need.

If you would like more information about our strategy and our new roles, please contact either of us via This email address is being protected from spambots. You need JavaScript enabled to view it.