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Autism (Quality Standards)

Volume 528: debated on Tuesday 24 May 2011

Motion for leave to bring in a Bill (Standing Order No. 23)

I beg to move,

That leave be given to bring in a Bill to require the Secretary of State to make a referral to the National Institute for Health and Clinical Excellence (NICE) to develop and publish quality standards for autism spectrum disorders; and for connected purposes.

Autism, autism spectrum disorders and Asperger’s syndrome are terms that are increasingly entering public consciousness. The number of people who are diagnosed with those conditions is rising. That is the result of a growing awareness of the conditions and the greater specialism that is now available. However, far too many people are not having their needs met. Most Members will have had casework relating to children, young people and adults with those conditions. Such cases are usually about the difficulty that they and their families experience in accessing appropriate diagnostic services, education, health care or social care.

I declare an interest as the parent of a child with ASD, but I speak today for all families across the country who experience difficulties in accessing services. The Bill is an attempt to plug a gap that I believe exists in the commissioning and provision of health and social care for people with autism, particularly those whose IQ is above the level of diagnosis for a learning disability. The National Institute for Health and Clinical Excellence has quality standards for conditions such as chronic kidney disease, dementia and stroke, and it is working on more as we speak. However, none of those standards will relate to autism. I am encouraged that NICE is developing three sets of guidelines relating to autism management in children and adults. I argue that the creation of an overarching quality standard would bring together those strands into one coherent approach. What would the standards look like? I am grateful to members of the all-party parliamentary group on autism and to the National Autistic Society for their work on this. I will put forward some suggestions on behalf of everybody who has been involved.

First, people with ASD should receive care and support from appropriately trained staff who are capable of making reasonable adjustments to understand them and meet their needs. Secondly, people with suspected ASD should be referred to a specialist team. A diagnostic assessment should start within three months of the initial referral and there should be support throughout the assessment by the ASD team. Thirdly, people with ASD should be assessed for any co-existing mental health conditions. The severity of their symptoms and the degree of any associated functional impairment should be identified. Those who require additional help should be offered immediate support.

Fourthly, people who are newly diagnosed with ASD and/or their carers should receive appropriate written and verbal information about the condition and the support options that are available locally. Fifthly and importantly, people who are newly diagnosed should be given a profile detailing their strengths, skills, impairments and needs. That should be the basis for a needs-based management plan that covers learning, communication, self-care and other adaptive skills, behaviour and emotional health. The plan should take full account of the family context and the particular needs in each case.

Sixthly, people with ASD should have a community care assessment carried out by a trained assessor. Any care plan should be agreed across health and social care. If required, people with ASD should be given support to use direct payments or personal budgets. Seventhly, carers of people with ASD should be offered an assessment of their emotional, psychological and social needs and, if accepted, should receive tailored interventions identified by a care plan to address those needs. Let us not forget the carers in all this. Eighthly, there should be an ASD strategy group in each local area to help plan services for children and adults. Each group should contain representation from people with autism—the service users—as well as from mental health services, education, social care, parents, carers and the voluntary sector.

The ninth suggestion is that the professionals working with a child with ASD who is approaching the transition to adulthood—a lot of Members will know the difficulty that young people have with that transition—should inform social services and the child about the need for a community care assessment. Adult social services should formally contact the young person and/or their carer before adulthood is reached, so that such young people get the continuity that they deserve.

Finally, people with ASD who use child and adolescent mental health services should have a plan in place for the transition to adult mental health services. Where the referral criteria are not met, it would be good practice to signpost other sources of support.

Why bring this proposal forward now? It is clear that whatever the precise outcome of the important reform that the NHS is undergoing, the process of commissioning health and social care services will change. That will include the process of referring quality standards proposals to NICE. I suggest that the Bill comes at precisely the right moment and that it highlights the vital importance, which is underlined by the Government’s proposals, of bringing together health and social care. That is not before time say all of us with an interest in and a passion for issues to do with autism and related conditions.

Those who commission services for people with autism would be helped by a list of quality standards, because it would help to define best practice. It would inform GPs and other potential commissioners of the gold standard of provision for people with autism. Patients and service users would also be made aware of the standards that they should expect from service providers. NHS trusts and other professionals would also be helped. Maybe, just maybe, the lives of thousands of people with autism can be made better.

Question put and agreed to.


That Mr Robert Buckland, Roger Williams, David Mowat, Annette Brooke, Andrew Griffiths, Dr Julian Huppert, Robert Flello, Jonathan Reynolds, Damian Hinds, Justin Tomlinson, Charlotte Leslie and Nicola Blackwood present the Bill.

Mr Robert Buckland accordingly presented the Bill.

Bill read the First time; to be read a Second time on Friday 25 November, and to be printed (Bill 194.)

On a point of order, Mr Deputy Speaker. Could you clarify whether the House has the option to take today’s votes in an order that would facilitate the expression of Back-Bench opinion, as we will be debating Back-Bench business? In the usual course of events, a motion is not voted on until the amendments have been taken. That means that if the Government use their majority to whip through an amendment, the House will never get the opportunity to vote on the motion that the Backbench Business Committee selected for debate. Is it possible for you to ensure that the House has an opportunity to vote on the motion that was selected for debate, or are we in the hands of the Whips and those under their influence?

Unfortunately, I have been told that the answer is no; those are the rules on how votes are taken. As frustrating as that may be for the hon. Member, those are the rules of the House as they stand.

Further to that point of order, Mr Deputy Speaker. Given that this is a Backbench Business Committee debate and the will of the House needs to be heard, would it not be sensible for Her Majesty’s Government to accept the point that the hon. Member for Harwich and North Essex (Mr Jenkin) has made and not move the amendment?

As a long-serving Member, the hon. Lady is well aware that that is not a point for me to rule on, but Government Front Benchers will have heard it. There does not seem to be much movement from them to comment, so we will move on.