Over an 18 month period, health services, local authority, parent carer forums and Voluntary, Community and Social Enterprise (VCSE) organisations have worked together to design a new ‘needs led’ pathway to help support parents/carers and children where the child has a need associated with a neurodevelopmental condition, autism and/or Attention Deficit Hyperactivity Disorder (ADHD).
Historically, the focus has been on the diagnosis, but more often than not, the diagnosis did not always meet the need the child had. Consultation carried out with parents, revealed that the health, education and local authority systems needed to work more closely together to make sure services were available to meet the needs of children.
Changes also needed to be made to the ‘diagnostic’ element of the service to ensure children did not have to undergo unnecessary assessments over an elongated period of time. We still have work to do to get the waiting times down but new processes will help with this and more importantly, your child and family should feel supported during this assessment process.
What’s changed
We want to offer more support to you and your child when you first become concerned that your child might have an additional neurodevelopmental need. The diagram below highlights services which are available in your local area which you can access free of charge. There are links further down the page to allow you to access more information about the service. These services will help you explore your child’s needs and can offer you support and techniques to help meet these needs. Parent Carer Forums are a great place to start as you are able to speak with other parents who have been on a similar journey. Alternatively if you don’t feel ready to speak to other parents yet, then there is a wealth of information available through the virtual offer.
Darlington Bubble of Support
Self-Help / Virtual Offer
Please take time to explore this section, as there are a selection of strategies, activities and webinars for you to access. All have been recommended by NHS England and the Regional Parent Carer Forum.
Behaviour:
Develop your new routine as soon as you are able. Have fixed points within the day that you can focus on, even if there is ‘free time’ at other parts of the day. Use diaries, timetables, lists and other familiar supports to aid this: https://www.autism.org.uk/about/strategies/visual-supports.aspx
Consider using social stories or social narratives to explain the changes we are making and why they are happening.
The Challenging Behaviour Foundation have made all their videos about managing behaviour that challenges available online.
The Challenging Behaviour website offers lots of helpful advice and guidance for parents, carers and professionals.
Positive Behavioural Support (PBS) is an evidence-based approach which is recognised as best practice in supporting people with learning disability and behaviours that challenge. The overall goal is to improve a person’s quality of life and the lives of people around them and minimise the chances of behaviour that challenges happening in the first place.
The North East and Cumbria PBS Steering Group is working with partners from across the health and care sector, including Northumbria University, and has developed a website at www.pbsnec.co.uk which provides information and resources to support families around PBS on upcoming events, courses and latest news.
Sensory Ideas for the Home:
A recorded webinar has been developed by an Occupational Therapist to outline tips and guidance for supporting children and young people with sensory needs within the home.
Check out the following website for useful ideas, top tips and information for children’s occupational therapy: https://cddft.nhs.uk/our-services/community-services/children’s-services/children’s-occupational-therapy/top-tips.aspx
Positive Behaviour Support:
Below are the links to a short film created to showcase the co-production of Positive Behaviour Support (PBS) training for parents of children with a learning disability, autism or both. The project has been created by parents who work at Skills for People (Jillian Allan and Shona Chambers) working alongside Alison Branch (North East and Cumbria PBS Community of Practice) and is set to expand in the coming year.
The film was made by Beacon Films and funded by an NHS England / NHS Improvement Sharing and Celebrating Patient and Public Involvement in Healthcare Community Grant.
With subtitles:
https://vimeo.com/423221243/bae45b191a
Without subtitles:
https://vimeo.com/423220234/96572afc01
Wellbeing:
Here is a link to the Learning Disability Matter website for families; it has a range of resources to support family resilience and health and wellbeing of children and young people with a learning disability:
Speech and Language Therapy:
Speech and language therapy in Darlington is provided by North Tees and Hartlepool Foundation Trust Speech and language therapy for children
Other resources you might find useful:
South Tees Hospital NHS Foundation Trust Paediatric Speech & Language Therapy
South Tees NHS Speech Therapy YouTube channel
BBC website ‘Tiny Happy people’
Occupational Therapy:
County Durham and Darlington NHS Foundation Trust Children’s Occupational Therapy
Returning to School; support and strategies for managing behaviour and worry:
Parent Carer Guides:
Parent carer organisations from across the region have worked together with NHS England to develop the North Cumbria & North East Children & Young People’s Peer Network newsletter which is full of advice, signposting and training opportunities.
Darlington Parent Carer Forum
Run by parents for parents.
Family Support
Contact can provide support to families where they think their child could have a neurodevelopmental need. Please see flyer below for more details.
You can also find more information on their website at https://contact.org.uk/
0-19 Service
Growing Healthy Darlington provides 0-5 and 5-19 services to young people and families in Darlington: 0-19 Service Darlington
Darlington Local Offer
Darlington Borough Council SEND (Special Educational Needs and/or Disabilities) Local Offer website: https://livingwell.darlington.gov.uk/Categories/528
Mental Health
Kooth online mental wellbeing community – free, safe and anonymous support: http://www.kooth.com
Darlington CAMHS Community Team for Children and Young People
Meeting Educational Needs
Other resources:
North Tees Autism information and guidance – https://northtees-autism-info.co.uk/
Darlington Borough Council Early Years and Childcare – https://www.darlington.gov.uk/education-and-learning/early-years-and-childcare/
Darlington Borough Council Early Help Assessment – https://www.darlington.gov.uk/education-and-learning/childrens-social-care/early-help-assessment/
Attention Deficit Hyperactivity Disorder – https://www.adhdfoundation.org.uk/
Foetal Alcohol Spectrum Disorders – http://www.fasdnetwork.org/
The Neurodevelopmental Pathway Team
A team has been developed specifically to co-ordinate the assessments and support which a child and their family might need whilst undergoing an assessment for ASD and ADHD. The service is provided by Tees, Esk & Wear Valleys NHS Foundation Trust (TEWV) and is for children aged between 5 and 18 who are registered with a GP in Darlington.
For Children aged under 5 – work is still ongoing to change this assessment process, but at this time, please continue to speak to your health visitor, GP or other health professional.
Additional Information
The following documents include a guide on how to refer your child and the Referral form:
The team aims to support young people, parents and carers as much as possible throughout their assessment process and is happy to offer support and advice. For any additional information, please contact tewv.darlingtonneuro@nhs.net