As schools start to return in Scotland today, perhaps it’s a time for some reflection. What will it take for society to recognise, celebrate and support neurodiversity?
To say that we personally have been through the mill in trying to navigate a hugely complicated system is an understatement.
It has taken 5 years to get a consultant appointment for my daughter still not to be ‘formally’ diagnosed as Aspergers. Five years of fighting a system that seems set up to make the situation worse. Five years of asking, writing, phoning, begging for help across health, education and social care. This is a problem not confined to Scotland – we’d been fighting to get help for two years prior in Wales.
My daughter has not been in school since February 2018, despite us trying absolutely everything to get help, we’re still waiting. I’ve met with MSPs, MPs and countless professionals. She has no place at school for August and we’ve not heard from the school she is registered at since March. She’s 14.
It feels like we’ve fallen through a wormhole into a parallel universe. One where thousands of parents and children are screaming for help, yet their cries are falling on deaf ears. A universe where no one takes responsibility: “It’s not my job”, “I’ll refer you”, “You’re on the waiting list”, “It’s above my pay scale”. These are some of the responses we have had from teachers, doctors, social workers, education support workers.
Great policies may be talked about, however, in reality often their implementation is an utter failure. It goes across local and national government, across sectors, and frankly it is unacceptable.
Prior to Covid we were experiencing a national crisis in mental health and provision of care. Adequate support to those who are deemed on the spectrum or having Special Educational Needs, simply doesn’t exist. That crosses from those who are non verbal, or severely physically impared, to those who are highly intelligent and articulate with huge potential.
Research and statistics show that upwards of 25% of children in the UK do not fit into the current education system.
GPs, psychologists, medics of all sorts don’t seem to be able to deliver the health care required by society. A child being taken to A&E for a mental health crisis, might not even be seen by a doctor. They may have been taken in by the police. The child will be sent home, with no support and put on a waiting list for CAMHS. They then may have to wait 18 months to get a letter for an initial appointment. When they finally get to the top of that list – their assessment will go to another team, to be assessed and put on another waiting list. Or worse, they might turn up an hour late for a home appointment, then leave after 15 minutes saying they can’t help, your child’s problem is behavioural.
The system is driving children and their families to despair, those working within the systems seem utterly powerless to change anything. They know there are problems, however, nobody seems to be able to take responsibility and make things better.
We have monumental problems and it is the responsibility of all of us to fix it. From my own experience of having had to struggle through the system for my daughter, I think the following changes are required:
- We all need to recognise that the problems are significant, they are structural and cultural. Put aside blame and work together to support – children and their families and those working within the system.
- The NHS needs to radically overhaul it’s communication strategy and delivery mechanism – a simple CRM system with appointment booking management – nothing complicated and not expensive to implement – tech has moved on.
- Training on systems and impacts of tone of voice and urgency of communications is also desperately needed. This goes from the GP and receptionist training through to CAMHS inability to manage appointments and the physical paper pushing that is going on in departments across the land. Paediatric consultants would like to support children, before they are in crisis, early intervention is essential.
- Education needs to support children and families rather than referring to other agencies or charities that don’t have the resources, nor capacity to help. There are lots of folks all ready in schools, empower them to actually make a real difference instead of banging their heads against closed doors. Educators also need to recognise that all children have gifts – just because they are being difficult – you shouldn’t shun them – help kids find their gifts and build confidence. Children shouldn’t come out of the education system broken.
- Those working within Local Authorities need to take responsibility for their actions – or inaction – cut out the bureaucracy and help people – saying an issue is above one’s pay scale is simply unacceptable.
- Every GP surgery should have mental health support on site, with therapists available on a daily basis, be that in person or online appointments. Having to wait 6, 8, 12 months or more for help amounts to cruelty. How many people take their own lives, have family break-ups or become homeless during the waiting time?
- There needs to be accountability – not policing – but measurable and achievable working practices and targets that ensure departments and budgets are working together – not against each other – making problems far worse.
- Maybe it’s time to get a big blank piece of paper and reimagine a system that really does work and joins thinking and action together. Start at a local level and build up.
- What best practice learnings can we take from around the world – France in healthcare, Scandinavia in Education?
- Diet is essential in maintaining a healthy body and mind. Access to healthy nutritious food, whether in the home, at schools or in hospitals. Every school should have a kitchen garden, where kids learn how to grow food and look after the soil, learn to cook and have fun whilst doing it. Our connections to the soil and biodiversity are going to be essential if we are to help mitigate the coming challenges of climate change.
The horror of what has unfolded during Covid, should be a wake up call to all of us. It’s time for monumental change.
Gillian Bell FRSA is the founder and director of Caim Communications. She is also a Board Director and Trustee at The Larder West Lothian and a Fellow of the Institute of Digital and Direct Marketing.