World Autism Awareness Week

Hannah Bardell Excerpts

Thursday 28th April 2016 Commons Chamber

[Pauline Latham (Mid Derbyshire) (Con)]

I congratulate my right hon. Friend the Member for Chesham and Amersham (Mrs Gillan) on securing this important debate. I realised the importance of this subject just before the last election when I met a group of parents in my constituency who were talking about the problems that they had experienced. I had previously met people with autism, but I had not understood the pressures that parents and families are put under by the diagnosis, or even by not having a diagnosis of their children’s problems.

I met people who had never received a diagnosis and did not think that they would get one because nobody seemed to recognise that their child had autism. However, it was clear from what they said that the children in question were suffering from a form of autism, although it had never been recognised. Those parents were at the end of their tether and did not know where to turn to next. It is not just mums who have this problem; there were also a lot of dads at that meeting. It is not only about children; it is often adults for whom even less support is available. Whole families are affected, and autism can cause such a big strain that it affects the parents’ marriage or partnership. Many of those situations break down when people have one, two or even three children with autism.

I want to focus on local situations in Derby and Derbyshire, where I feel that the system is failing children who need the diagnosis and help in schools. Through an active group in the area—particularly in Spondon—I have met many people who have autism or whose children have autism. Last year and this year the cathedral has been lit up blue to highlight National Autism Week and to show people that there is a problem in that area. I commend it on that.

[Hannah Bardell (Livingston) (SNP)]

The hon. Lady is making interesting and powerful points and has mentioned the problem that people with autism face. In my office I have employed someone on the autistic spectrum. Does the hon. Lady agree that we need to change the narrative in some respects, because people on the autistic spectrum have specialist and incredible skills, and it is so important that we are positive about those people and the opportunities that they provide to society?

[Pauline Latham]

I completely agree. There are some incredible people with autism, but I am talking about the problems that they need to overcome to access proper education and help for themselves and their families. We must focus on the fact that it is the system, not the people, that is the problem.

In Derbyshire, families have to wait far too long between getting a referral for autism spectrum disorder and a diagnosis. Local authorities need better training for local authorities and schools regarding education, health and care plans and dealing with ASD pupils. We need a better transition from special educational needs statements to the new EHCP, and that has been badly managed in my area.

ASD behaviour and management strategies should be a mandatory part of the teaching qualification for teachers and teaching assistants. There also seems to be a lack of knowledge by parents on the legal rights and services available to them as a family dealing with autism, and we as a society need to recognise that and put out more information for those who are dealing with autism. Guidelines from the National Institute for Health and Care Excellence recommend a maximum of three months between a referral and first appointment for an autism assessment. It has been estimated that in Derby that takes closer to 12 months, which is far too long when a child is having problems with their behaviour in school and needs help now.

The Children and Families Act 2014 mandated local authorities to move from special educational needs statements, which outlined a child’s needs and how help would be given, to an education, health and care plan for each child. It also reduced the amount of time that children with special educational needs had to wait for an education, health and care plan from 26 weeks to 20. However, in Derby city the average wait is 35 weeks, and that is after people have already waited for 12 months. Derby local authority did not make sufficient plans to prepare itself for that change, and it has been on the back foot ever since. Until February 2016, only 12% of statements had become education, health and care plans, which is really unhelpful for families. That gap causes delays in the child’s educational development, and places additional stress on the families caring for them.

I believe that Derby city is now asking schools to complete the education, health and care plans even though they are not meant to, and the training provided to school staff on changes to the law has been labelled by some parents as “diabolical”. Admin staff at schools do not understand the difference between a special educational needs statement and education, health and care plans, because they often copy and paste them. Without an EHCP, children on the autistic spectrum disorder are managed by inexperienced staff with a fundamental lack of understanding of ASD.

Derby city local authority has to employ consultants who know what they are doing to help make changes, but they cost four times as much as usual school administrative staff. When all local authorities claim that they are short of money, that seems to be a complete waste of money, although if it gets the process completed more quickly for families and children with autism, it is obviously better for them. However, that money could be better spent on mental health care for autistic children and their families.

If local authorities consistently ask schools to carry out the care plans, as is happening in Derby, we must ensure that schools are given the necessary funds and training for that. There is no obvious legal accountability if deadlines are not met. We must support the parents and siblings of children with ASD. Early diagnosis is key to avoiding the mental health problems associated with not knowing what is wrong and being able to deal with it, and we must move faster to help those children and families to deal with their problems.

--- Later in debate ---

[Norman Lamb]

That brings me nicely on to my next point, because I was going to say that this is not one Government’s responsibility; we all have to learn and understand more. The article in The Economist made clear the strong economic case that if we invest in diagnosis and early intervention, we will save a fortune in lifetime care. As we learn, the Government have to respond. That is the challenge. This Government, because they are here now and because new learning can lead to improvements, have a responsibility to respond.

[Hannah Bardell]

The Library briefing paper states that

“the Government does not collect data specifically on employment rates for people with Autistic Spectrum Conditions”.

We should campaign, cross-party, to change that and work with business to get interviews that are friendly to those on the autistic spectrum.

[Norman Lamb]

I totally agree with that. As a former Minister, I recognised during my time in the Department of Health that, whether it be mental health, autism or learning disabilities, we operate in a fog. There is an absence of data that have been analysed and understood. If we are to make the improvements of which we are capable, we have to understand the evidence, which involves the collection of data.

I want to highlight the failures of society and the extent to which we treat people with autism as second-class citizens by referring to two cases. The case of Connor Sparrowhawk, who tragically lost his life through drowning in July 2013, has been much documented recently, and his mother, Sara Ryan, has been an amazing campaigner, fighting for justice. The Oxford Mail reported this morning about a recently leaked report, produced for the NHS trust some 11 months before Connor lost his life, that demonstrated failures of care in his unit. The article states:

“The report found Slade House was particularly poor, flagging up issues with a ‘lack of clarity of care plans’, ‘no clear understanding of a ‘locked door policy’

and so on. What is the point of commissioning reports at enormous expense if their conclusions and recommendations are ignored?

There has been great focus this week on the importance of the accountability of public bodies following the shocking conclusion of the inquest into the Hillsborough tragedy, but that importance stretches across all public bodies and into healthcare. It is important that organisations recognise their responsibility to involve the families of those who lose their lives in investigations and to have an open and learning culture, rather than a closed culture that excludes families. The trust’s treatment of Sara Ryan in the investigation of Connor’s death has been truly shocking. There must be accountability and a willingness to learn from mistakes and to take account of any recommendations.

As we try to get people out of assessment and treatment units, where they are often left for too long, the Health & Social Care Information Centre has found that 15% of the transforming care cohort, of which the Minister will be aware, have autism and no learning disability and that 23% have autism and a learning disability. When looking at the transforming care partnership plans and the outcomes for individuals, it is important that the Department ensures that the specific needs of autistic people are included and addressed.

Finally, I want to refer to the case of an extraordinary constituent of mine. A nine-year-old boy wrote a letter for his parents to take to a meeting that I had on his behalf with the authorities at Norfolk County Council, and he ended up being interviewed—at the age of nine—on the “Today” programme, and it was a remarkable interview. He movingly wrote in his letter:

“I normally say to myself you have to keep on going. I normally also say ‘is it worth it’. I could just kill myself. I wouldn’t have to face today.”

That comes from a nine-year-old boy. His family has been left waiting some two years for a diagnosis without any real support. They have been told that he does not meet the threshold for care from the Child and Adolescent Mental Health Services. Other hon. Members have highlighted similar cases, with the hon. Member for Berwick-upon-Tweed (Mrs Trevelyan) talking movingly about her experience, for example. The family, by borrowing from relatives, have managed to pay for some support for their little boy, but what about all those families who cannot afford it? It is intolerable. We cannot justify a society in which children get help if they have articulate parents or parents with money, but where those without go without.

As we seek to implement maximum waiting time standards in mental health, something which I have made my mission, my plea to the Minister is that we include autism and follow the NICE guidelines that the first diagnostic assessment should start no later than three months after GP referral—not 36 months, as I am told is sometimes the case in Norfolk, or 24 months, as in many other parts of the country. The result will be that society and the Government will save money in the long run if we make the investment in diagnosis and treatment at an early stage.