Every turn of the wheel is a revolution

Every turn of the wheel is a revolution: developing community CAMHS services for children and young people with intellectual disability in Northern Ireland  

Dr Heather Hanna & Siobhan Rogan  

The Southern Health and Social Care Trust set up Northen Ireland’s first fully integrated Child and Adolescent Mental Health Service (CAMHS) team for children and young people with intellectual disability in 2014.   Our guiding vision was equal access to CAMHS for all children and young people – nothing more and nothing less. This shouldn’t be a revolutionary idea, but we know that our children experience health inequalities and barriers to accessing health services.   A picture of a bicycle on the wall of a famous pub has been our hallmark, it says “every turn of the wheel is a revolution”. 

In Northern Ireland, CAMH services are organised according to a Stepped Care Model; designed so that children and young people can access timely support whether they need early, targeted interventions or increasing levels of specialist care. As part of this approach, the range of supports provided by CAMHS has grown over the past fifteen years.  

Despite a growing policy imperative, children and young people with intellectual disability have not had equal access to this range of supports. Across our systems and structures, there is an incontrovertible need for change. Our Children’s Commissioner has described access to specialist multi-disciplinary and therapeutic mental health services for this group of young people as wholly inadequate.  

In many ways, Northern Ireland is well poised to deliver change. We have had integrated health and social care for decades. In our NHS trust, CAMHS sits within a directorate which delivers all health and social care for children and young people, including paediatrics and child protection services.  

In 2014, CAMHS-ID was born. This was possible and sustainable because of integration within wider CAMHS structures and collaboration with Paediatric and Children with Disability services. We adopted a ‘no wrong front door’ approach to ensure timely access to services and pathways for comprehensive biopsychosocial assessment and evidence-based interventions. Many young people present to the service with behaviours that challenge, others with evident mental health conditions. Most of the young people we see are autistic. Having the same front door for everyone, with access to specialist teams, ensures that children and young people get to see the right people at the right time.  A simple concept, but fundamentally a right-based issue – equal access to healthcare. In the words of Eleanor Roosevelt, “Where, after all, do universal human rights begin? In small places, close to home – so close and so small that they cannot be seen on any maps of the world”.  

We believe that equal is not the same. Whilst our ambition is to provide equal access to CAMHS, providing this often means an extraordinary level of resource including time and practitioner expertise. We cannot expect to sit in clinics and talk our way through difficulties our children experience. We think of our service as being the same, but different – illustrated in this table: 

Our motto is to “journey with children, young people and their families, giving hope by working for and with the child, to ensure the best possible quality of life.” Families value the flexible and responsive nature of the team; they appreciate their child’s wellbeing and quality of life being central to our approach and they have a high regard for clinical expertise.  

When you deconstruct the belief that our children and young people are complex, solutions are easier to find. The reality is that our systems are complex and often struggle to meet children and family’s basic needs. Systems can be outdated in their culture and practice and overwhelmed by fear or a drive for self-preservation. We know that our children and young people can become very distressed, and systems become very overwhelmed when trying to understand and meet their needs. People fall back on automatic ways of thinking which in the past has led to institutionalisation – exclusion from school, a view that only a psychiatrist and pharmacology can fix the problem, reliance on restrictive practices. 

It is important to bring challenge and solution, empowering people to make the system work for the child. Helping people to see and do things differently is part of our job. 

When you reframe behaviour referred to as challenging, often the challenge is the child facing barriers to having their fundamental needs met. Again, harnessing people to rally a team around the child, and a relentless focus on positive and creative ways to meet the child’s needs and build their skills, can bring meaningful change.  Sometimes, we find one simple thing that makes all the difference in a child’s life, such as constipation being treated. Doing this work is easier than not doing it and makes a difference. 

Developing services in Northern Ireland faces significant obstacles. Our undergraduate and early career pathways do not prepare clinicians for this work and staff wellbeing and development requires constant attention. Clinical excellence and governance must be integral to all we do to ensure continual improvement and prevent idiosyncratic or unhelpful practice slipping in.  Shared values and shared responsibility across the team ensures a sense of purpose and joy in our work. External networks of support are vital because, as a wise person once cautioned, “revolution is exhausting”.  

Change is possible. The team has been recognised for its innovation and outcomes in a range of national and regional forums. Of note, there have been no admissions to inpatient care for more than five years which is significantly lower than the regional average.  

In 2021 Northern Ireland’s ten-year mental health strategy recognised the need to ensure children and young people with intellectual disability have equal access to CAMHS and highlighted our team as a model of good practice. The development of CAMHS-ID teams across the region has been identified as a funding priority. We are not there yet, but every turn of the wheel is a revolution.