Autism

Baroness Chisholm of Owlpen Excerpts

Tuesday 22nd March 2016 Grand Committee

[Baroness Chisholm of Owlpen (Con)]

What an excellent debate we have had this afternoon. As is normal, I am going to have to try in a short time to get through answering all the questions, which have been so incredibly interesting. I am grateful to my noble friend Lady Browning for raising this important issue. I pay tribute to her many years of support for those who have autism and indeed to the support in the contributions of all our speakers.

Parents can find themselves in a frightening and bewildering place, first, when they sense that there is something wrong with their child and, secondly, once they are given a diagnosis. Autism is particularly bewildering, partly because it can manifest itself in so many various ways. Obviously, as my noble friends Lady Browning and Lady Rock, and the noble Lord, Lord Touhig, said, a timely diagnosis of autism is essential to ensure that the relevant health, care and educational interventions can be implemented for the maximum benefit. The noble Baroness, Lady Hollins, also mentioned that if there has been an early diagnosis, problems can be sorted out before they become too desperate. It is essential to ensure that families do not spend a long time in limbo, uncertain of how best to support a child or young person. Indeed, the same can be said for staff in schools and other settings. As the noble Baroness, Lady Hollins, mentioned, a diagnosis may make a massive difference for adults if they have struggled through their life without support. As our understanding of autism and its impact has improved, we have become better at early identification and more nuanced approaches to therapeutic interventions.

NICE has recommended that following a referral for a clinical assessment, a person should wait no longer than three months before the assessment process begins. NICE also highlights that given the complexity of autism, this process cannot be rushed. This is a challenge for the NHS and its partners. There is no doubt that in some parts of the country the demand placed on services, often through the sheer weight of numbers, means that they can struggle to meet the standards. NICE guidelines recognise that there is evidence of girls being one of the groups at risk. It is looking into better guidelines on this issue.

I will set out some actions that we are taking centrally to deliver improvements in how the NHS and its partners are able to deliver timely diagnoses. Diagnosis is of course a process which should be driven locally by clinical commissioning groups, working in partnership with their local authorities, to develop the right pathways to assessment and packages of care which result from a diagnosis. The noble Lord, Lord Hunt, and my noble friend Lady Browning talked about meeting targets and holding CCGs to account. The Department of Health and NHS England, along with the Association of Directors of Social Services, are visiting CCGs and local authorities. These visits aim to develop a better oversight of the challenges in securing timely diagnosis across all ages. They will consider data on waits, which are so essential, and the design of pathways—as a nurse, I really dislike that word, as the noble Baroness does, but I cannot think of a better one to use. They will also consider many of the critical issues raised so that they can make an effective assessment of how information is made available to the public, the links to mental health services and social care services, how initial referrals are triaged, and who provides leadership locally for autism support. NHS England will complete its work in April and then report to the cross-government autism programme board.

Effective commissioning must start with effective identification of needs. The Department of Health issued guidance in 2014 for health and well-being boards on children’s complex needs, including autism, which provides key insights to effective assessments. The noble Lord, Lord Warner, mentioned that there should be specific commissioning for autism to take it away from other learning disabilities. I will write to him further on that but, as the noble Baroness, Lady Hollins, suggested, it can be difficult to separate the two when symptoms and behaviours can so often overlap. Quite often with diagnoses, somebody appears with a different kind of symptom than a natural autistic symptom. That can perhaps lead to finding that the child is also on the autistic spectrum, so I am nervous about separating the two.

The noble Lord, Lord Addington, spoke about higher education. It is essential that school staff are able to recognise and meet the needs of children on the autistic spectrum. The Department for Education has funded the Autism Education Trust to provide training for early years, school and further education staff across the spectrum of need. To date, the AET has provided training for around 87,000 education staff. I know that the AET is aiming to reach a key milestone of 100,000 trained staff in the summer of this year.

In brief, local authorities and CCGs are required to work together in joint arrangements to assess the needs of individuals and develop education, health and care plans designed to focus on the outcomes that will deliver the biggest impact for the child and their family.

Raising the skills and awareness of the workforce is of course key to diagnosis. The Department of Health has provided financial support to the Royal College of General Practitioners to make sure that there is a priority programme on autism, with practical work on autism awareness and training for GPs. This will enable people who may have autism to be supported more effectively from the start of their assessment process.

Last year, the Department of Health also provided funding to a number of organisations, including the Royal College of Nursing, the Royal College of General Practitioners and the National Autistic Society, to upgrade their autism e-learning training tools and materials. The department has also funded the development of two e-learning tools which can help people working with autistic children, young people and young adults to provide better services.

As people with autism are susceptible to mental health conditions, it is also worth noting that this Government are driving forward the transformation of children and young people’s mental health services, improving access and making services more widely available across the country. The transformation programme, backed by additional investment of £1.4 billion over the course of this Parliament, will deliver a step change in the way that children and young people’s mental health services are commissioned and delivered.

Also very important is the work done under the auspices of the 2014 Think Autism strategy. There are three key new proposals in the strategy that I think will make a difference. Think Autism community awareness projects will be established in local communities, and there will be pledges and awards for local organisations to work towards. The Autism Innovation Fund provides funding for projects that promote innovation, local services and projects, particularly for low-level preventive support.

The noble Lord, Lord Touhig, mentioned better data collection, and this is indeed very important. There will be more joined-up advice and information relating to services, including a new way for social care staff to record a person’s condition. There is also a commitment to make it easier for people with autism to find information online, including information about how their local authority is performing.

The noble Lord, Lord Hunt, mentioned finance, which is always at the top of everything. The Government have allocated £4.5 million for the Autism Innovation Fund and the autism community awareness programme. This funding has been announced for one year.

What will make an enormous difference to diagnosis is effective local engagement with parent forums and other groups. That is critical to CCGs being more effective in meeting complex needs locally. They have expertise and experience, and they can interpret and provide a voice for their children.

We have heard today from my noble friend Lady Rock, very emotionally, about the difficulties she had with the diagnosis of her child. We should listen much more to what parents are saying. They know if there is something wrong with their child, and when they go to see a GP they need to feel that that GP is going to listen to them. Parents are often co-ordinating and managing a complex range of services and interventions as part of their caring role. NHS England has undertaken considerable work in this field to promote the value of engaging with parents.

I know I have left out several things that various noble Lords brought up and will make sure that I get back to them on all those issues. The noble Lord, Lord Touhig, asked whether Ministers will work with NHS England to commission an autism register in GP records. It is felt that a register per se is not necessary to their primary care work in supporting people with autism. GP practices already maintain registers for people with learning disabilities under the quality outcomes framework.

Commissioners are now beginning to realise that awareness, diagnosis and support needs to be of a high quality across the country. It is debates such as this today, though it was far too short, that keep autism firmly on the radar. I thank all noble Lords for their participation.