‘We need to consider those who are more vulnerable to the impact of climate change, but who also have the least control’

Would you like to introduce yourself?

Xan Brooker, Neurodivergent, Perpetual student, Integrated Strategic Commissioner for Neurodiversity affirming NHS and Social Care Services in Kent and Medway. Studying Systems Thinking in Practice with a focus on the relationship between Climate Change and Neurodiversity.

What is your role as a commissioner in Kent, and the biggest issues facing your area?

Commissioning is understood as a process of planning, purchasing and maintaining health and care services. We are supported in our work by a commissioning cycle – broadly Analyse, Plan, Do and Review. In my experience, commissioning can be both limited and limiting in terms of improving the situations experienced by people. This is particularly true because commissioning was founded within the principles for competition, and in my experience can be reduced to a cyclical process that is used to create and monitor provider target delivery. This is a challenge and commissioning needs to respond to this.

Traditional commissioning practice has contributed to a landscape of services which are target-driven, resulting in people experiencing a gatekeeping approach. This was seen to play out recently in ADHD and Autism assessment and diagnostic services, while people with learning disabilities continue to be recognised as experiencing some of the worst outcomes as a result of inaccessible services, despite consistent targets and programmes to address this.

Systems approaches can complement but stretch this commissioning approach. Systems approaches allow us to develop strategies and services that can flex and adapt, and to engage with uncertainty to create new possibilities. In Kent, this is particularly important because the landscape our residents live in is tangibly uncertain as a result of climate change.

How does this role relate to the needs of neurodivergent people in your area?

My role as an Integrated Strategic Commissioner means bringing together multiple organisational perspectives with the perspectives and experiences of neurodivergent people.

The purpose of this is to 'review' and 'analyse' whether the combined processes are delivering what is intended and expected. Often there are differences in experience between stakeholders, and we expect that organisational pressures, such as budgets, will add uncertainty throughout the 'planning' and 'doing' phases of the commissioning cycle. Bring in the additional uncertainty created as the neurodivergence paradigm shifts from pathologisation to neurodiversity and the day job certainly becomes interesting!

Integrated commissioning has a role in developing the infrastructure to bring multiple organisational partners together, and also in developing the opportunities and potential for the partnership to deliver. In Kent and Medway this infrastructure is a Partnership Agreement for Neurodiversity, which includes the flexibility to pool and align budgets, enabling organisational partners to commission jointly around the needs of neurodivergent people.

To create a culture for potential and innovation, this agreement was written with neurodivergent people who embedded the language that reflects their experience into the definitions. This is a partnership of organisations that have been asked to come together and learn the language of its neurodivergent citizens. This creates an opportunity for a new commissioning practice.

How can commissioning support neurodivergent people?

Where commissioners are able to create partnerships like the Agreement for Neurodiversity, different conversations do happen, and different outcomes are made possible. This happened during the process of developing integrated commissioning within the current partnership as we learned during the Covid-19 pandemic.

One programme to address inequality experienced by people with learning disabilities is the NHS England Service Improvement programme Learning from Lives and Death service (LeDeR). This was traditionally commissioned, with the delivery and performance of providers monitored and reported at a national level. During the pandemic, in Kent neurodivergent people with their advocates and supporters, providers of services, and commissioners came together in a state of uncertainty and learned together.

By May 2020, Kent was recommending that providers of supported living services for autistic people, and people with learning disabilities, purchase and use Oximeters to identify Covid-19. Then, in January 2021, Kent approved the recommendation to include anyone on the Learning Disability Register, anyone in Supported Living and anyone in any Care Home within groups 1-4 as a priority for the vaccinations. These examples show that commissioning practice that engages with uncertainty and complexity can blend with traditional approaches resulting in different possibilities.

Building on this learning; at the time of writing, the Kent and Medway Partnership for Neurodiversity are working in co-production with self-identifying and diagnosed neurodivergent people alongside providers to design and test new services that validate and support people based on their experiences. This will both complement and challenge the existing assessment and diagnostic services (starting with ADHD) and offer new insights and learning to all participants. This learning is necessary so that the impact of climate change as experienced by neurodivergent people is considered within commissioning practice.

You have spoken about the importance of recognising the impact of climate change on the citizens of Kent. Can you tell us why this might particularly impact neurodivergent people?

Climate central mapping, informed by the IPCC (2021) shows large parts of Kent, particularly Thanet, Swale and Folkestone areas as lower than the sea and annual flood level in 2030. The areas most likely to be below the flood level correlate with the areas where disabled people live, and this includes neurodivergent people who are receiving NHS and Social Care services, as well as those who are not yet recognised.

In my commissioning brain, this demonstrates the importance of developing a new approach to commissioning, co-producing with people now, and developing our thinking more outwardly to consider the needs of those who are more vulnerable to the impact of climate change, but who also have the least control. This different model of commissioning is key to working with neurodivergence, with climate change, and crucially, when supporting people within the contexts where they live. Equal, inclusive partnership will be key and integrated commissioning has a key role, provided it is embedded as a systems approach.

And from a personal perspective; this is about me and my people.