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Innovative pilot project enables children with learning disabilities and autism to receive support earlier

Posted on the 9th May 2018

An innovative pilot project led by Lancashire Care NHS Foundation Trust in partnership with Chorley and South Ribble Clinical Commissioning Group has led to more children under five with learning disabilities and autism receiving vital support at an earlier stage of their lives than before.

The project, called ‘The ERIN Initiative’ (Education, Resources, Intervention and Networking), was introduced by Lancashire Care’s Learning Disability and Complex Needs Service in South Ribble to ensure children aged below five with developmental delay and/or autism receive appropriate support at an earlier stage of their lives. Sheila Roberts, Senior Practitioner, and Tracey Hartley-Smith, Integrated Service Leader, worked in partnership with the local CCG and paediatricians from Lancashire Teaching Hospital Trust, to develop the project.

The ERIN Initiative, which is also named after Sheila’s first grandchild Erin Mia who died during labour in April 2016, was introduced in October last year. It was developed to support the under 5s ASD pathway after paediatricians found that for some pre-school children it was difficult to reach a decision around diagnosis of autism due to conflicting or incomplete assessment information. Some of those children then had to wait until starting school to access further formal assessment  from the Trust’s specialist Learning Disabilities and Complex Needs team. The project now means that, when appropriate, pre-school children are diagnosed early, enabling health professionals to offer them and their families support for difficulties such as behaviour, sleep and toilet training.

Sheila Roberts, Senior Practitioner in the Learning Disabilities Complex Needs Team at Lancashire Care NHS Foundation Trust, said:

“Parents of children under five years old would approach us saying they were concerned that difficult behaviours are being seen at home but not in an educational setting and for some this made it more difficult for the multi-professional team to diagnose autism.  This situation has greatly improved following the introduction of The ERIN Initiative.  Most children can now receive a decision around diagnosis and access support much earlier than previously.

“Early diagnosis is beneficial for children with developmental delay and/or autism and their families to prevent or help manage common difficulties. I previously worked as a community nurse for children with learning disabilities and I would often hear parents of older children saying that they needed the advice and support when their child was much younger. In children with developmental delay and/or autism, behaviours can become entrenched and intervening earlier can have a positive impact for that child’s future development.”

“I was asked to think of a name for the project and wanted to include Erin's name in it if I could.  The letters in her name instantly linked with the four parental support elements of the project which are 'Educational' sessions, development of 'Resources,' 'Interventions' for daily difficulties and the opportunity to 'Network' with other parents and services. Being able to name the project after Erin makes my family very proud that Erin's name lives on in a positive way.”

Susan Holloway, Children and Young Peoples Transformation Co-ordinator at Chorley and South Ribble Clinical Commission Group, said:

“As part of the initiative, parents and carers are invited to attend education sessions around developing a greater understanding of ASD, challenging behaviour, sleep difficulties and toilet training. The Project commenced on 1 October 2017 and has so far had a great impact with feedback from parents and carers being phenomenally positive. Because of the extreme behaviour exhibited by these children, parents and carers regularly withdraw from activities such as shopping, visiting places and sporting activities, and The ERIN Initiative adds immense value in helping these families. Next year, we’re hoping to expand this service to the parents and carers of 5 to 16 year olds.”

The project has also been recognised and praised by NHS England, which asked Susan Holloway and Sheila Roberts to present their findings to them at a webinar in March with the commissioning rationale and a description of the service. NHS England issued a report in September last year recommending that early intervention or support is crucial in providing children with learning disabilities and autism with specialist support. The Learning Disability and Complex Needs Service was also recently shortlisted for Lancashire Care NHS Foundation Trust’s Partnership Working Award and has also been put forward for a NHS 70 Parliamentary Award because of The Erin Initiative.