The formation of a local strategy group and ADHD ‘alliance’, with statutory services supported by, and in collaboration with the ADHD Parent Group, and new local charity, ARCS. We are all aware of how outcomes for children are determined not by the quality of a single service, but by the support they and their families receive in all aspects of their lives.
Our vision is to co-operate across the relevant services and, working with commissioning, make use of the passion and local knowledge of our ADHD community to create a mutually supportive network around Lambeth to support CYP with ADHD.
We feel this ethos is captured in the following NICE guidance NG87:
1.1.3 Every locality should develop a multi-agency group, with representatives from multidisciplinary specialist ADHD teams, paediatrics, mental health and learning disability trusts, forensic services, CAMHS, the Directorate for CYP, parent support groups and others with a significant local involvement in ADHD services.
Aims and objectives
Our aim is to form a multi-agency alliance across Lambeth.
Our shared vision is to see a world where having ADHD doesn’t hold you back:
- Where every member of staff and professional in Lambeth schools has an awareness of ADHD.
- Where no CYP is written off, fails or is excluded from school because of their ADHD.
- Where ADHD is accepted and recognised as a neurodevelopmental condition in the community.
- Where CYP have access to a timely assessment and diagnosis.
- Where all Lambeth children, young people and their families affected by ADHD have access to high quality and evidence-based interventions within Lambeth.
- Where ADHD CYP and their parents/carers are no longer blamed for the condition.
In doing so, we take the NICE guidance as our primary marker of effectiveness: this project is related primarily to the following sections of that guidance:
1. Service organisation and training
We have set up a local ADHD strategy group which acts to coordinate activity, and also a local charity, ARCS, to deliver training, support and information as laid out in NICE recommendation 1.1.3
We want professionals who work with children to be able to recognise features that may indicate ADHD (or other neurodevelopmental conditions) and have access to specialist assessment and advice.
For this we need:
a) a coherent and clearly communicated neurodevelopmental assessment pathway within health, with sufficient resources to ensure that waiting times are not an additional burden on families.
b) all professionals to have ADHD knowledge and understand that taking a neurodevelopmental view on behaviour can be constructive and reduce stigma.
3. Information and support
The information that families need to digest when a diagnosis of ADHD is made, can be overwhelming. In addition to the information given at the point of diagnosis, we are taking the following approach:
- A programme of open access education workshops run by CAMHS
- Information and signposting from the ARCS website
- Developing and co-designing access to parenting support that is empowering not stigmatising
For schools and other professionals:
- A programme of ARCS CPD training days
- Guidance freely available online, for schools that is age specific
- Ongoing training for health professionals within existing CPD programmes.
We think that these are necessary steps to achieve the recommendations in NICE NG87
Reasons for implementing your project
Our scope is the population of Lambeth. Lambeth is a highly diverse borough with a population of
325,000. Lambeth is ethnically diverse with 63% of school children being of BAME background. The population is fast changing with 12% of residents moving in to the borough each year and 12% leaving- there is significant pupil mobility within schools. Lambeth is one of the most deprived areas in the country, and the 5th most deprived area in London.
Specifically, there are 70,000 children and young people in the borough. There is a high rate of identified Special Education Needs (SEN) - 17.8% compared to the London average to 14.6%.
A 2018 ARCS/CAMHS survey about the current ADHD service in the borough (coordinated by the ADHD Strategy Group) was issued to both CAMHS staff and parents with the following results:
- 65% of parents/carers did not feel supported by services
- Only 15% parents/carers accessed CAMHS
- 85% of parents/carers wanted:
- ADHD specific parenting advice and behavioural support
- Advocacy support when accessing schools and other services
- ADHD awareness training for all the professionals working with their families
The following key themes arose from the staff survey
- The need to educate communities and build capacities locally
- Services are not being accessed by families
- 35% of staff not confident in supporting families
One message that has consistently come through is that better coordination between services makes families feel more supported, and thus decreases demand, as well as improving outcomes
The strategy group felt that key areas for this cooperation and further development were:
- A coherent neurodevelopmental assessment pathway crossing paediatrics and CAMHS
- A shared approach across education health and social care to supporting families, including efficient information sharing
- There is a need to collate and coordinate baseline data across Health, Education, Social Care and CJS
The Lambeth ADHD Parent Support Group has been involved in this work from the outset, and the ARCS charity was founded, and is run by, a parent of children with ADHD. The strategy group has members from health, education and social care as well as parent representatives.
How did you implement the project
The results of the aforementioned survey were presented to staff, to parents and to commissioners. Initial funding was given to ARCs charity by Mercer’s Trust (via a staff recommendation) and from commissioners.
There were several challenges that arose. The main challenge is sustainability of the model, the strategy group, the parent support group and ARCS charity are run on a ‘voluntary’ basis. For professionals engaged in this work, it is an extra, on top of existing job plans. For parents, an additional responsibility on top of the existing work of raising children with additional needs. This has slowed progress and made the project always fragile. Work is ongoing with commissioners to address this.
Prioritisation of ADHD within organisations: While individual professionals were broadly willing to engage, the status of ADHD within organisational plans was a barrier. It is not an official DofE category of SEN, being bundled in with SEMH, and so getting the Local Authority to address it as a separate category of need has been, at times, challenging. Equally, the health commissioning for assessment of ADHD is still being clarified, as for years Lambeth has received input from paediatrics for ADHD in excess of what other services within the same organisations (GSTFT) have done.
Understanding and culture within schools: some schools adopt a ‘zero-tolerance’ approach to behaviour, justified by the belief that behaviour is ‘chosen’. Countering this approach has been challenging and resulted in a lot of stress and effort for the team. Children and families face the direct consequences of these institutional tensions, which frequently results in internal and external exclusions and educational alienation.
As a result of the distress faced by the families, the initial aim of ARCS charity work was to directly support families and young people, and provide case work. It was soon clear this was a huge burden on volunteer parent time.
It was evident that the direction of work needed to be readdressed. As a group, we came together to focus on where our strengths lie, and how we could utilise the wealth of professional and expert parent knowledge within the network. This knowledge was pulled together to resource three bespoke training days; one for primary schools, one for secondary and one for youth services. This was funded by commissioners.
The following is some direct quotes from the attendees of the training provided by ARCs and the strategy group:
‘It really highlighted the difficulties that arise when a school stops listening and how isolating this is for the parent and therefore the child’.
‘Great to hear from a young person who has been through the school system and is doing well’.
‘Since the training I feel like I am better at understanding ADHD behaviour. I have worked on building the relationships and trust with a few of our students with ADHD’.
‘Very helpful. This has been an aspect of ADHD that I have struggled with previously. Now I understand where it is coming from’.
‘I thought the day was very worthwhile and extremely helpful. In particular, hearing from Max Davie, Kate Cheesman, parents and young people directly affected by ADHD was very enlightening’.
‘I found Maggie Olowade (sic) (ARCS Director) contribution was invaluable it was well organised and had some very useful tools to take away and use in real life’.
‘Brilliant day was more than I expected’.
As a direct result of the ARCS Secondary School Training Day, a group of interested teachers, inclusion managers and SENCOs, in collaboration with the Director of Educational Psychology and the ARCS Director, and the highly specialised OT (who co-designed the Lambeth Primary School Pack) have committed to co-designing and producing a Secondary School ADHD toolkit and resource pack. Pupils with ADHD will be at the heart of its design, production and implementation. The CCG has agreed funding for this project.
The success of the training has also led the Metropolitan Police to commision ARCS to deliver bespoke ADHD training to 150 of their Custody Officers and Safeguarding Champions (the first training session was delivered on 27 February 2020).
As a result of the Universal Services ADHD Training Day, Fulham Football Club commissioned ARCS to deliver specialist De-escalation ADHD training to their inclusion afterschool and holiday club coaches.
At this point we do not have specific data on impact. The project is at a crucial stage of going from being an ambitious and passionate ‘start-up’ to part of the fabric of services in Lambeth.
Key learning points
We have identified the following as are our critical success factors:
- Champions from CAMHS, Paediatrics, Education and parents
- Active parent support group presence prominent in the SEN review planning
- Committed and experienced parents who have devoted their time for free
- Dynamic and proactive ADHD Nurse
- Dynamic and effective ADHD multidisciplinary Strategy Group
- Maintaining a vision which is relevant to all stakeholders –including parents and young people
- Ethos of co-production and partnership from the very top
- Willing to listen to each other and think of new ways to support ourselves
- An understanding that communication is key to our success
- Proper funding and investment
- This is possible!