We welcome the publication of NICE Quality Standard on autism

The National Institute for Health and Care Excellence (NICE) has today published its Quality Standard on autism setting out what good services for children and adults with autism should look like. 

Local councils and the NHS will now need to look at whether services are meeting relevant areas of this standard. This should mean the specific needs of people with autism are taken in to account in the design of services. The standard can also be used by people with autism and their parents/carers as information about what high-quality care or services should include. 

The need for a Quality Standard was a key recommendation of our You Need to Know campaign for improving child and adolescent mental health services (CAMHS) for children with autism.

The Quality Standard sets eight measures to assess the quality care for people with autism, which include:

• diagnosis should happen within three months of referral to an autism team
• whilst being diagnosed, people must be assessed for comorbid mental or physical health issues
• those with a diagnosis should have a personalised plan, developed between the individual, parents/carers and the local autism team
• everyone with autism should have a key worker to support delivery of the personalised plan
• People with autism should not be prescribed medication to address core features of autism
• those who develop behaviour that challenges should be assessed for possible triggers, including physical health conditions, mental health problems and environmental factors
• people with autism and behaviour that challenges should not be offered antipsychotic medication for the behaviour unless it is being considered because other interventions are insufficient or cannot be delivered because of the severity of the behaviour.

Mark Lever, Chief Executive of The National Autistic Society, said:

With the right support at the right time, people with autism can live rewarding and fulfilling lives which is why we campaigned hard to secure this Quality Standard.

The first step to getting the right support is having timely access to diagnosis so speeding up the process will have a significant impact on the lives of thousands of people with autism in England, many of whom have waited or are waiting, to obtain this critical milestone.

The Standard recognises that people with autism can also have mental or physical health issues. Professionals need to understand that all of a person’s issues need to be looked at when providing support and so services should rightly be judged on their ability to do just that.  

This Standard will also allow for services to be measured on how they respond and treat challenging behaviour and makes it clear that people with autism should not be prescribed medication to address the core features of the condition.

People with autism have campaigned long and hard for their needs to be addressed when professionals are designing support and services: measuring progress against this Standard will help to ensure that this happens.”

The Quality Standard can be downloaded from the NICE website. 

MPs quiz Care Minister on key campaign demands

MPs continued to maintain pressure on the Department of Health to meet its commitments under the Autism Act, as the National Autistic Society’s ‘Push for Action’ campaign was raised in Parliament during the Health questions session.

Angela Smith MP asked the Secretary of State for Health when he expected the revised adult autism strategy to be published. Responding on behalf of the Government, Care Minister Norman Lamb said that the review and revised strategy would be published at the end of March 2014.

Ms Smith also asked the Minister if he would consider the NAS’s proposals to introduce an ‘innovation fund’ for local councils to encourage the implementation of new and innovative models of service provision for people with autism. The Minister commended the Push for Action campaign and the work of the NAS. He confirmed that the Department was seriously considering these proposals and that they have ‘real merit.’

Chair of the APPG on Autism, Robert Buckland MP also asked the Minister how he plans to use the review to bring forward programmes to increase autism awareness amongst the general public. The Minister accepted that general awareness of autism is still low but that the strategy review provided an opportunity to ensure that implementation makes a real difference on the ground for people with autism.

The Minister’s comments were encouraging, particularly with regards to our proposals for an innovation fund. We are also glad that the Department of Health recognises that there is still much more work to be done to ensure that the spirit of the Autism Act is maintained in the revised strategy and that people with autism get the support that they need. 

Tom’s campaign blog #6: NOISE.

You know that feeling when you suddenly realise that the kitchen extractor fan has been left on since you finished cooking and then you turn it off and suddenly the atmosphere seems incredibly calm and soothing and down-right wonderful and even though you hadn’t actively ‘noticed’ that noise was there while the fan was on its new-found absence makes you feel like a twenty-tonne weight has been lifted off your shoulders? It’s nice isn’t it?

Anyway, as a man who likes a convoluted analogy, that’s my metaphor for using local media to help win a campaign. I’ll explain…

Last month, we launched an action asking our army of campaigners to write to their local and regional papers raising awareness of autism and the Push for Action campaign, using Susan Boyle’s recent announcement that she has Asperger syndrome as a handy news hook. Hundreds of you acted (thank you!), and as a result we’re now seeing hundreds of your letters in the papers, with more being spotted every day.

Each letter on its own is valuable. Maybe a few thousand people will see it, and a few hundred will read it properly. Some of those people are even likely to be local councillors, service directors or MPs. (We know from research that most MPs always read the letters pages of their local papers.)

But the action’s main effect, much like the extractor fan in my clunky and poorly-judged nimble and near-perfect analogy of four paragraphs ago, is to create that constant background ‘noise’ about autism and about the campaign. People might not even consciously know that its there, but trust us: it will be having the desired effect.

Back in 2011, we were campaigning hard against some of the proposed changes to Disability Living Allowance and launched a similar press action which also got excellent pick-up. A few days later, out of the blue, I got a phone call from a press officer at the Department of Work and Pensions. “We’ve been picking up a lot of local press on the issue of autism and DLA reform”, he explained. “Would you mind coming in to the office to talk to us about your concerns?” The ‘drip, drip’ of coverage we’d generated through these simple letters-to-editors, even though it was just in local papers with often tiny circulations, had reached the heart of Government on a crucial policy area.

When stories about autism are popping up everywhere, appearing in the papers, websites and Twitter feeds it creates the sense that the issue is current, urgent and relevant. And that makes it that much easier for campaigners like us to get the traction we’re after, be that in Whitehall or town halls. Members of the public are more likely to be supportive, MPs are more likely help out, and the Government is more likely to listen.

So, please keep sending those letters. You can be the extractor fan to the Department of Health's kitchen. Or something.

Tom Madders,
Head of Campaigns