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Supporting vulnerable young people to find their voice

The ability to communicate with those around us is a vital part of human development, but for many children and young people with challenges or complex conditions, support is needed to give them a voice.

The Suffolk Communication Aids Resource Centre (SCARC) is a highly-specialised community service, part of the West Suffolk NHS Foundation Trust, that provides the tools and expertise to give hundreds of children and young people that specialised support.

Part of the Integrated Community Paediatric Service (ICPS), SCARC is a Suffolk-wide service that cares for children, and young people up to the age of 25 most of whom have special educational needs. Service lead Della Chubb said, “There are no local services like ours so we really are a lifeline for families. People who have been silent can finally find their voice. It’s the best job in the world.

“We offer a solution or partial solution to children and young people with complex needs who need support with ongoing access to communication via technology. We assess each individual according to their need, and then provide the equipment and training. Our devices spur on the patients’ language, and improves their communication.”

Della explained the service provides and maintains the equipment, which is then integrated into the overall package of care provided by other ICPS colleagues caring for the patient. While some can be discharged once they have learned how to use the equipment, long-term patients can be part of the team’s caseload for up to 25 years.

The team also runs a telephone advisory service for other professionals and can signpost to further resources. “Technology has changed beyond all recognition and there is new learning for us every week. Most users access special software via an I-pad, but some require dedicated devices,” said Della.

The WSFT service works in partnership with the clinical commissioning group, social care and the local education authority. It has been running for 25 years and cares for an average of 370 people. The team of seven comprises three speech and language therapists (SALT) including Della, who works clinically as well as managing the team. In addition there is an occupational therapist, a communication aid practitioner and communication aid assistant, and an administrator.  

Most referrals to the service come from health or education professionals. For more information visit:

https://www.wsh.nhs.uk/Services-A-Z/Childrens-services/Childrens-community-services/SCARC/Suffolk-communication-aids-resource-centre.aspx

One of the patients who has benefited from the SCARC service is Oliver. Della Chubb asked his mother, Lisa, to share some of their experiences with us:

Tell us about Oliver and his communication journey

Before embarking on this journey, Oliver was non-verbal. Oliver has always shown an interest in visuals and social stories. When it was mentioned to me about him having a communication aid, I thought it was a good idea and anything to help with his speech. We started with PECS (Picture Exchange Communication System), which Oliver took to very well and the next step was a Talk Pad (communication aid). After the initial realisation that it was not a iPad, Oliver took to this very well. It took him a while to figure out where everything was but it has been of great benefit to him.

How has a Talk Pad helped Oliver?

It has helped to avoid a few meltdowns when asking for things, as he can show you on the Talk Pad and hear how it is pronounced properly. It has helped him to be able to communicate more with people and has given him a bit more confidence. Still a long way to go but definitely couldn't do without it. 

What would you say to any parents considering SCARC as a support for their child?

I would definitely say consider it. It has really helped Oliver. I would highly recommend it. Also the SCARC team have been so helpful. They offer great training for it, refresher courses and assessments with the child. They are always at the end of the phone when needed. My child has benefited so much from the Talk Pad and I am so grateful Oliver was put forward to have one. It has helped his communication in ways that I did not think would ever happen.

 

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Photo of Oliver with tablet

Photo of Oliver with tablet