Neurodevelopmental conditions are those that affect the functioning of the brain or neurological system. Children with neurodevelopmental conditions can have difficulties with language, speech, communication, motor skills, behaviour, memory, learning, or other neurological symptoms. Examples of neurodevelopmental conditions include:
- Autistic Spectrum Disorder (ASD)
- Attention Deficit Hyperactivity Disorder (ADHD)
- Developmental Language Disorder (DLD)
The Sheffield Neurodevelopment Transformation programme started in June 2020 and has the ambition of improving the services we provide to better meet the needs of children with neurodevelopmental conditions through working with families and carers as well as children and young people. The programme is being undertaken by Sheffield Children’s NHS Foundation Trust (Sheffield Children’s), Sheffield Clinical Commissioning Group (CCG), Sheffield City Council, and Sheffield Parent Carer Forum with crucial input from Healthwatch and Education.
What initiated this programme?
Neurodevelopment services were a decided focus for improvement and an area of priority for the city by the Sheffield Children’s Health and Wellbeing Board. Key reasons for this focus included:
- Feedback from families/carers that changes were needed to improve help and support for their children with neurodevelopmental conditions.
- Linked with current strategy priorities from Sheffield Health & Wellbeing Board, Sheffield Children’s, Sheffield Health and Care Partnership, and aligned with Adverse Childhood Experiences (ACEs) and Mental Health initiatives.
- Heightened need to support children and parents when experiencing a neurodevelopmental need with the reopening of schools in September 2020 after a long-term closure due to Covid-19.
There are five workstreams within the programme:
- Right identification at the earliest time: ensuring children’s vulnerabilities and needs are picked up and supported as early as possible. We want to support frontline health, care, and educational staff to have the right skills and knowledge in order to successfully support families through informed conversations and signposting confidently.
- Right support, right time: putting in place the right support for families based on need, not a diagnosis.
- Integrated care in the community: bringing together professionals from education, health (physical and mental), and care to assess and address the needs of children and young people closer to home e.g., schools.
- Improving the assessment pathway: co-developing better referral, assessment, and diagnosis pathways for neurodevelopmental conditions to better meet family needs, including improved booking processes and the development of a Sheffield Children’s Single Point of Access (SPA).
- Improve support to Neuro-diverse children and young people (CYP) in Schools:working in 10 mainstream secondary schools across Sheffield to improve the response to the needs of neuro-diverse CYP by developing forums for parents and CYP to receive peer support and by providing co-developed training and resources on sensory, emotional wellbeing and communication areas.
The aims of the programme are seen as a roadmap pictured below and are designed to support a family every step of the way when accessing neurodevelopmental services.
The programme is managed as a ‘Large Scale Change’ with a Task and Finish Group that meets weekly and works to three-month phases with clear actions and outputs. The bullets below describe an overall successful approach to working on the programme from set up, communications & engagement, system leadership:
- Address the root causes
- Willingness to develop and broaden the scope
- Committed to building robust and honest relationships
- Common vision and shared ownership and purpose
- Evolution rather than resolution
- Proactive, not reactive
The challenges identified initially included:
- Developing a group of professionals from a range of partner organisations with different cultures, perspectives, and priorities into a cohesive team during the first six months of the Covid pandemic.
- Enabling the group to feel comfortable about identifying and focussing on the root causes of the challenge rather than trying to tackle the symptoms.
- Building the capacity to deliver the programme without additional resources/funding.
These challenges were addressed by everyone working to the same goals and all bringing a system mindset, focussing on what was right for children, young people, and their families, not their individual organisations. Individuals also prioritised the work of this programme to gather enough evidence to build a successful business case for additional resources.
Existing challenges identified include:
- Ensuring continued support for the programme during a challenged Winter.
- Managing expectations about the impact of the programme before we can evidence this. Many of the actions completed/underway require significant cultural or process change which takes time to achieve and then evidence the impact.
- Engaging with different communities across the city to ensure that their voice is heard, and their needs can be addressed.
Approaches to these challenges include managing messages, identifying impacts as and when they happen, and being clear about when/how the impact is routinely evidenced. Sheffield Parent Carer Forum has also just launched its Safe Space meetings which are aimed at parents from ethnic minority communities.
- New ASD resources on the Sheffield Children’s website for families on the ASD assessment waiting list. Resources contain support strategies for managing difficulties around sleep, mood, anxiety, sensory issues, and going back to school.
- An ASD mythbuster has been developed in collaboration with Sheffield Parent Carer Forum, Sheffield Children’s, Sheffield CCG, and Sheffield City Council. As of July 2021, this resource has had a reach of over 4000 people on the Sheffield Parent Carer Forum Facebook page and has been shared over 23 times.
- A pilot started in the Firvale area of Sheffield, where health, education, and care professionals are meeting to identify the support required for children with additional needs referred by schools.
- New parent-led training to help early identification is available for all staff working in Early Years. The training aim is to help staff feel more confident about discussing concerns with parents, in turn, help to signpost to the right support. As of July 2021, over 200 staff had attended the course, feedback received includes an average of 4.5/5 likelihood to recommend the training to others and between a 40-55% increase in confidence and knowledge after attending the course. There will be an online version of the training to make it more sustainable and a toolkit/resource pack has been developed which is on the Sheffield Parent Care Forum website and given to all attendees.
- Excellent joint working has been evidenced across all sectors which has strengthened relationships and developed new, more integrated ways of working.
The following reflections were given from the project team’s experience of working on the programme so far:
- “Commitment and passion from all the partners involved has helped the momentum of the programme. It is about successful partnership working and real co-production. It will change the way we identify, diagnose and manage neurodevelopmental conditions in children and young people – basically changing the culture around neurodevelopment and ultimately delivering services based on need not on a diagnosis. Whilst we are seeing small improvements now, we need to acknowledge that it may take several years to see the benefits of this. Whilst the waiting lists for diagnosis are a real challenge, the work around early identification, raising awareness, training and educating, and forging strong links between clinicians and schools are the fundamentals of the programme. If we don’t tackle the root causes, then we won’t tackle the increasing waiting lists in the long term.”
- “The key to the success of this programme is co-production and the inter-relationships between the members of the group. Through regular contact in the weekly meetings, we have forged strong relationships, built trust and respect for each other and the organisations/services we each work in. This has given us a strong base to put actions into place, learn from these in a safe environment, and create an integrated citywide working approach to neurodevelopment services for children and young people in Sheffield.”
The provisional aims/priorities over the next few months depending on recruitment and funding being identified include:
- Broadening the scope within localities and communities by working closely within schools and attending local panels to decide on the appropriate support for children who have additional educational needs.
- Go live with a SPA for ASD and ADHD referrals.
- Work with 10 mainstream secondary schools in Sheffield to raise awareness of ASD, and to improve the response to the needs of ASD students.
- Secure funding to engage with those communities who have been less well heard by decision-makers in the past.
- Start to identify developmental vulnerabilities very early on, and provide additional brain building activities in place for a small cohort of families as a project.
- Explore the expansion of Health Education England training to Early Years.
Evaluation and feedback
Regular audits of calls made to families, parents, carers and young people with neurodevelopment needs through the programme inform the developments and offers of support in response to their needs. Feedback gathered shows families are appreciative of the contacts made with these offers of support and signposting. Additionally, parents and carers felt “listened to” in terms of the issues they are facing.
Feedback gathered from teaching staff after attendance of a clinician at a school panel meeting:
- “Being able to have lots of heads thinking together and coming up with at least 1 step forward can only be a good thing and it makes sense that no one agency is able to ‘solve’ the issues on their own. It also means that we are made aware of the most pressing cases early on.”
- “I found having other professionals there really helpful, it’s so good to be able to find out where children are at with health, what diagnosis they have received, and next steps. And then it is really helpful to be able to ask what a diagnosis means for a child and /or check our understanding”
- “I thought the panel was excellent – for Early Help services it is so much better to be part of the conversation ‘upstream’ before things have moved on too far – as we alluded to on a couple of occasions, I think some of the work we did today could / should genuinely prevent some of the children discussed requiring Specialist provision because we’ve got in earlier.”
Feedback gathered from Healthwatch Sheffield:
- “I self-referred to Multi-Agency Support Team and they bumped it up to social services. We got a social worker doing door visits. They were really good. A guy from the Council Inclusion and Attendance team has a monthly Zoom meeting with us to help her and I’ve got two other Autistic kids. He troubleshoots. I report any issues and he unblocks things, for example, he chases things up.”
Visit the following page to stay up to date with the progress of the Sheffield Neurodevelopment Transformation programme and find ways to be a part of the programme.