Anne-Marie Trevelyan is MP for Berwick.
The Conservative Party has put mental health on the political agenda as no-one has before. We’ve invested more in mental health than any previous government, hired tens of thousands of staff, and most importantly, enshrined the parity of esteem between mental and physical health in to law.
For all these great steps forward, we will be judged by those who are left behind. Last month the Prime Minister took a big step forward by opening a review into the 1983 Mental Health Act, under which too many people have been discriminated against for too long.
There is one specific group which continues to have a miserable time in the mental health system, and whose cohort have not benefited from improved access to core therapies and services. That group is autistic people. They need our support.
We’ve all heard the statistic that a quarter of us will experience a mental health problem at some point, but few know that within the autism community that is true for almost eight in ten. To those of us familiar with autism, this isn’t a surprise. Society is designed for us neurotypicals – as my autistic son likes to call me – so almost everything can cause stress or worry for those wired differently. Having a different perspective on the world has huge potential benefits for our society and economy, and we fail those on the autistic spectrum to the detriment of both our society and the individuals in question. It is truly shocking to discover the scale of suicide across the autism community.
Last year, Autistica, the UK’s autism research charity, revealed international findings that autistic people without a learning disability are nine times more likely to die by suicide than the rest of the population. The charity’s research is now uncovering practically identical rates within the UK. As a parent, this is awful to hear. As an MP, it’s a rallying cry.
Three burning injustices
The exact causes behind this are complex and still being uncovered, but there are three clear ways in which our mental health services are letting autistic people down – three burning injustices that as Conservatives we have a duty to tackle.
First, we know that autistic people’s mental health problems are often misdiagnosed or missed completely. Despite mental health problems being the norm rather than the exception, there are no systematic mental health checks for autistic people. These problems can often look very different in autistic people, partly because so many become practised at masking their feelings to fit in. What is truly traumatic for one autistic person might not be for another so if they do seek help, autistic people can find their worries dismissed out of hand.
The Five Year Forward View for Mental Health, NHS England’s pre-eminent strategy for mental health, recommends the development of autism-specific care pathways for mental health. This work is supposed to get underway in 2018, but nothing has been heard since it was proposed last February. Right now, it’s not clear whether the project is actually happening, let alone who’s going to lead it, what its scope will be, how autistic people will be involved and a myriad more questions. This is a crucial opportunity to begin transforming care for autistic people. It’s vital that we get it right.
Second, we know that autistic people can struggle to find the support that works for them. It has been assumed that what works for us neurotypicals will also work for autistic people. My colleagues in Parliament may have recently seen an incredibly moving interview with a parent whose daughter took her own life. In her words: “just offering someone group therapy when they’re autistic is not going to help”. Autistic people may benefit from things like cognitive behavioural therapy, but we need to adjust them to fit the individual.
We have long neglected researching what mental health therapies work for autistic people, even though this topic overwhelmingly tops the list of research priorities for autistic people and their families. Our manifesto says that we “will address the need for better treatments across the whole spectrum of mental health conditions” by “mak[ing] the UK the leading research and technology economy in the world for mental health, bringing together public, private and charitable investment”. But whereas Autistica has invested nearly three-quarters of its budget over the last few years in the area of mental health, just three per cent of autism research in total has done the same. It’s about time that the public investment caught up.
Third, we know the NHS is bad at gathering and using information about autism. A case in point: GPs are often the first port of call for mental health problems. Going to a GP can be really difficult for autistic people. It’s a strange environment, with unusual lighting, sounds and rules that cannot easily be escaped. You get a ten minute appointment with a stranger who asks you a disconcertingly unclear question like “how are you doing?”, and you either clam up or panic and talk about the first answer that springs to mind rather than the issue you really came for. If you’re suffering from anxiety or depression that already makes leaving the house a battle, seeking help from your GP becomes impossible.
If your GP knew a bit about you to start with, they could make some adjustments to help. They could offer you a longer appointment at a quieter time of day; they could find out how best to communicate with you when you’re struggling . Every autistic person is different. If some basic information about preferences and needs was recorded and shared, we could improve the experience for each as an individual. But it isn’t and we haven’t. We’ve long had information systems to support people with diabetes, asthma and learning disabilities, but not autism. Until now.
In August, NICE recommended that these same systems – sometimes known as “GP registers” – should be developed to support autistic people. Jackie Doyle-Price, the minister responsible, has indicated that the Government wants to see this good practice spread and is “open to any suggestions” about how to do so. Here’s one: ensure that whatever happens to the Quality and Outcomes Framework (QOF), the autism registers still get set up. NICE have recommend that the QOF – an incentive scheme for GPs – is used to roll out the registers. When this was done for learning disabilities, 97 per cent of practices had those registers set up the next year. The QOF is due to be renegotiated in 2018 but whether it’s through that scheme or its successor, GPs still need to be supported to make these changes – we can’t just tell them to do it and expect it will happen.
It’s their world, too
This Thursday, 30th November, MPs from all sides will be debating these very issues in the House of Commons. In these three areas – pathways, research and data – we have a real opportunity to make a difference for autistic people in crisis. It was Cheryl Gillan who forced the Labour Government to first introduce the Autism Act. It was a Conservative government that put autistic people at the heart of its mandate to NHS England. It is this Conservative government that is working tirelessly to reduce the numbers restrained in inpatient facilities. Now we need to show autistic people that we won’t leave them behind when it comes to their mental health; that this is their world, too.