SEN0250

Written evidence submitted by Portsmouth City Council

Portsmouth: Using profiling tools to provide needs-led, early support

Introduction

Of 55,000 children and young people aged 0-25 in Portsmouth, 17% - approximately 9,500 - require additional support to meet their needs, over and above universal services like maternity and schools.

This figure includes over 2,000 children with Educational, Health and Care Plans, 3,500 requiring additional support in schools due to their Special Educational Needs and Disabilities (SEND), over 1,600 requiring statutory safeguarding services (including over 400 children we care for), over 1,000 children receiving Targeted Early Help services and around 1,200 receiving specialist mental health support from CAMHS at any one point. And of course, many children receiving multiple services at once.

The children’s services system is a £350million system, delivered by more than 3,500 adults through over 200 services - working together to improve a range of outcomes and life chance for children and young people.

When understanding what proportion of this population are neurodiverse, answers vary from a narrow definition of 1% to an expansive definition of 20% - however, the debate is important because the system’s current diagnostic led approach is designed and resourced for the 1%. This means the other 19% of children and young people are likely to appear in other costly and specialist services - from social and emotional mental health services to specialist educational and youth justice services - across the city.

This might provide an indication as to why more children and young people are joining ever lengthening waiting lists for a neurodiversity diagnosis - a problem felt in every corner of the UK.

On average, children and young people up and down the country are waiting more than two years, and in some cases up to five years (where a child can make it through the whole of their secondary education on a waitlist) for diagnosis.

What have we done?

So, in 2019, the integrated children’s commissioning team in Portsmouth started a conversation between Portsmouth City Council’s children’s services team, children’s social care, education, the NHS, and most importantly, parents and carers of neurodiverse children and neurodiverse children and young people themselves.

We learnt five things together:

1. There were long wait times for diagnosis and demand was outstripping supply.

2. Investment seemed to be skewed to diagnosis rather than support and intervention.

3. There was dissatisfaction among parents after diagnosis, with families getting referred around the system - from education to GP to CAHMS to therapy services.

4. Schools were facing significant issues in meeting the needs of a wide range of children with some level of neurodiverse needs - exhibiting itself in absence from school, behavioural issues, relationship difficulties and barriers to learning.

5. The level of understanding of neurodiversity - what it was and what can be done to make things easier for children at home, at school and in the community - was low, with children and young people experiencing discrimination, feat and intolerance.

None of this fit with our aspiration to be needs-led and prioritised assessment over meeting needs. So, alongside our local community provider - Solent NHS Trust - we launched a major piece of co-production work lasting 18 months, featuring experts from NHS providers and commissioners, local authority, schools, the voluntary sector and of course, experts-by-experience - over 80 parents and young people - to think differently about ‘profiling’ neurodiversity and the evidence-based resources that can help to make life easier.

Profiling tool and multi-disciplinary team - Needs led not diagnosis led

Profiling Tool

Portsmouth has developed a Profiling Tool based on 9 dimensions (sub-profiles) that can be used by practitioners working with families to gain a better understanding of a young person's neurodivergence and their needs.

A key element of the profiling tool is working with the family to understand what are the young person's strengths? and also to consider what are their needs and what support is required to meet those needs. A plan can them be implemented for support following on from the profiling tool being completed. These 9 dimensions span speech and language, energy levels, attention skills and impulse control, emotional regulation, motor skills, flexibility and adaptability, sensory needs, empathising and systemising, and cognitive ability.

Alongside this, Portsmouth has developed a training programme so that hundreds of professionals working across health, education and social care services can use this profiling tool to identify and support children’s needs. They have also developed a bank of resources and strategies for families to use - shaped to the child’s neuro-profile.

Multi-Disciplinary Team

To complement these interventions, Portsmouth has a multi-disciplinary team that can provide tailored help, advice, support and guidance to children and families. This team includes neurodevelopmental clinicians, family support workers, speech and language therapists, a keyworker, an occupational therapist, and an education psychologist.

Families who do need additional support can receive it without needing a diagnosis, and children and families who still feel a clinical assessment is needed can discuss this with the team.

Online Platform

A platform containing advice, strategies and signposting has also been co-produced with parents/carers and young people to have everything that helps in once place. The platform continues to see increased hits on a month-by-month basis.

Impact

To measure the impact of this intervention, Portsmouth has carried out a pilot of 51 children and young people aged 3 – 15 on the use of the Profiling Tool. It has found that in the 3-month period from baseline profile to family review, wellbeing scores improved for all three stakeholders - child, parent/carers and the professional.

A further piece of research is currently being undertaken with the University of Portsmouth to review the longer-term impact of the tool and preliminary findings should be available in 2025.

Further information regarding the tool and the platform can be found here: Family Assist Home - click on the neurodiversity tab.

What have we learnt?

The feedback we’ve received from young people, parents, teachers and professionals has been outstanding with extensive national interest in the model we have developed.

Portsmouth now leads a National Community of Practice on needs-led neurodiversity models, and we have presented the model to over 40 other areas - from Cornwall to Cumbria, London to Wales.

Our three key learnings are:

1. People create change - Families are our (and children’s) biggest asset, and we must co-produce services with them • It is absolutely essential to bring NHS clinicians, joint commissioners, local authorities and schools together in order to think differently. Partnership and integrated working - when well facilitated, led and genuinely valued - is the true bedrock of true innovation and transformation

2. Coproduction needs time - Co-production is essential, but it’s likely to take longer than anticipated • Allow space for people to define their own outcomes - they almost certainly won’t be the same things we currently measure!

3. Focus on needs - Unmet needs around neurodiversity affect far more children, and are almost certainly more significant, than you may think. Focusing on needs, rather than activities or processes is vital to addressing poor outcomes for children due to unmet neurodiversity need. We should also focus on care groups and not individual outcomes - as health outcomes, education outcomes and wellbeing outcomes are interdependent.

Claire Mason

Service Manager - Neurodiversity Multi-Disciplinary team

January 2025