Autism: Diagnosis of Children, Hull

Dan Poulter Excerpts

Monday 5th January 2015 Commons Chamber

[The Parliamentary Under-Secretary of State for Health (Dr Daniel Poulter)]

I congratulate the hon. Member for Kingston upon Hull North (Diana Johnson) on securing this debate on what is an important issue for her constituents and for many families, both in Hull and across the country. She made a strong advocacy for the needs of Thomas and many of her other constituents, and discussed some of the challenges locally as well as the flooding of facilities in Walker street, which has affected services. I think she would agree that the situation that has developed locally over time is unacceptable. I hope I will be able to reassure her that improvements in access to services are taking place and that improvements have been made over the past 18 months or so.

The National Autistic Society estimates that there are about 700,000 people in the UK with autism. We know that the right support from an early age, as the right hon. Member for Kingston upon Hull West and Hessle (Alan Johnson) said, can make a huge difference to the quality of life for children and adults with autism and for their families.

Before I address some of the specifics of the local issues in Hull, I think it is worth talking about some of changes this Government have made to improve lifelong support for people with special educational needs such as autism. I hope that will address the questions the hon. Member for Kingston upon Hull North asked in her closing remarks about improving services for people in Hull with autism.

The Children and Families Act 2014 introduced, from September, new joint arrangements for assessing, planning and commissioning services for children and young people with special educational needs and disabilities. In the past, many children and their families have encountered a disconnected and fragmented system. Families, particularly those with a child with complex needs, have often faced a battle to secure all the necessary support services, finding themselves repeating the same story over and over again to different providers who are not integrated or working together properly.

The new framework will change that. It is designed greatly to improve integrated working across health, education and social care, and to deliver improved outcomes for children and their families. CCGs and local authorities will work together to agree a local package of support services for children with special educational needs and to develop personalised education, health and care plans for each child who needs one, focusing on the outcomes that will make a real difference to the individual child and their family and friends.

Each child, and each young person up to the age of 25, who needs an individual education, health and care plan will have one tailored to their individual needs, including their options for future employment and independent living. Involving the child and the family at every stage of the process is, of course, essential. The plan must be developed in collaboration with the child and the family, and should cover the range of services that the child will receive and the specific outcomes each service will deliver. The plans will also have a section for the child and the family to talk about themselves, their wishes and their aspirations, to set the context for the assessment of need. I am confident that this new approach will be a powerful tool to better join up and integrate services across the local NHS, education services and local authorities for the benefit of both children and adults with autism.

On the specific issue of waiting times for diagnosis in Hull, we know that children with autism can benefit from receiving specialist services as early as possible. The hon. Lady made that important point. The new education, health and care plans will help to ensure that children receive all the support they need, but a diagnosis is of course crucial in identifying from which services a child might benefit.

Hull CCG has committed to commissioning services with the aim of providing autism assessments and diagnoses within 20 weeks of referral, as the hon. Lady said. The CCG acknowledges that it is currently far from meeting that target. I agree with her that the situation at the moment is unacceptable. The current longest wait is almost 64 weeks, which is not appropriate or good for families. It is not right that anyone should have to wait that long, and it adds stress to what is often already a difficult time for families and children.

It is vital to recognise that NICE has guidelines on the importance of early and timely access to autism services for a diagnosis, but we must also accept that when the CCG took over commissioning from the primary care trust in April 2013, it inherited an even worse position than the one we have now. The hon. Lady was disparaging about CCGs, but I hope that will give her some reassurance that the clinical leadership of the CCG—together with the changes put in place as a result of the local education, health and care plans—are improving the quality of services.

Although only 52 children were waiting when the PCT transferred its responsibility to the CCG in April 2013, the longest wait at that point was 129 weeks, which is two and a half years. Hull CCG is working hard to address the issue of long waiting times for the assessments, and it has made substantial progress. The longest wait is now less than half the figure of 129 weeks. That reduction has been achieved while demand for autism services has been rising rapidly. The number of children requiring an assessment has increased sixfold, from 52 in April 2013 to 299 in December 2014. However, the long wait for services has halved, so some progress has been made.

Like many areas across the country, Hull has seen a large increase in the number of children referred for autism assessments and diagnoses. If the growth in the number of referrals means that more children with autism are receiving a diagnosis and therefore access to the services that they need to succeed in life, then the trend is obviously positive. However, it does of course put pressure on the multidisciplinary teams working to provide the assessments needed for autism diagnoses.

The hon. Lady drew attention to the fact that, in accordance with NICE clinical guidelines, Hull CCG commissioned an autism team made up of staff from a range of specialties and working for various providers. In response to the increase in demand for assessments, the CCG has been working with local providers to recruit additional staff to the autism team. However, it has found that recruiting to some specialties in the Hull area, particularly speech and language therapy, has been a challenge.

The CCG is continuing to work with local health and care providers. I had a conversation with the CCG area team earlier today, and I was reassured that it is now looking with greater vigour to recruit more permanent staff where there are challenges. In the meantime, there is an agreement with current staff for them to put in additional hours to support better access to services. That is only part of a short-term solution, however; the long-term one has to be to recruit more staff, particularly in vital services such as speech and language therapy. I was encouraged to learn, during my conversation earlier today, that greater emphasis will be put on long-term recruitment in the Hull area.

The CCG has also improved working practices in the autism team, which has freed up time to allow more assessments to take place. However, it is important to remember that, as the hon. Lady mentioned, Hull CCG lost an important clinical space when the Walker street children’s centre, a critical area for the service, was flooded during a tidal surge in December 2013. The centre allowed complex, multi-therapist diagnoses to be made, and its loss has had serious repercussions for the local service, which is not good for the delivery of timely access to diagnostic and other care services for people with autism. However, the CCG plans to reopen the centre early this year, which will go some way to reducing the waiting times for assessment. I hope that that reassures the hon. Lady and her constituents.

In the meantime, while the local NHS continues to work towards its commissioned target of a 20-week waiting time for autism assessments and diagnoses, it is also working to assist parents who are facing the current long waits for such assessments. The CCG is ensuring that while families are on the waiting list, they are able to contact the autism team. That enables them to access appropriate information and support services pending a formal diagnosis, which I believe is available from both voluntary and private providers in the area. That does not, of course, make the long wait for assessment and diagnostic services acceptable, but it means that families are not left completely unsupported and alone at what can be a difficult time.

[Diana Johnson]

I am listening carefully to the Minister and I am grateful that the CCG has been willing to brief him in a way that it was not willing to brief the local Member of Parliament. Does he find it acceptable that families are being told there is a 20-week wait for a diagnosis when clearly that is not the case? The wait is much longer, yet parents and families are still being given that false information.

[Dr Poulter]

I agree that the current situation is not acceptable, but the CCG inherited a much worse position from the primary care trust, and it has made progress in addressing the needs of those who have been waiting the longest. As I described earlier, in April 2013 when the CCG came into existence, the longest wait was 129 weeks. In October 2014 that had fallen to 81 weeks, and by December 2014 to 63 weeks. Progress is being made to deal with those unacceptably long waits, but ensuring that all families receive timely access to services must be the next priority. I am sure that the reopening of the Walker street service will be helpful in that respect, and that the hon. Lady will hold the CCG to account and bring the matter back to the House if it does not deliver improved services in the near future. Progress has been made in dealing with those long waits, but there is a much greater need to ensure that all patients receive timely access to a service. While a 20-week waiting time is a strong move in the right direction, in future patients should expect the service to move towards NICE guidelines.

Let me talk briefly about the broader issues that were raised in some of the interventions, such as training for staff. It is important that all NHS staff have a greater awareness of autism. The mandate for Health Education England was set by the Government and includes a requirement to develop a bespoke training course to allow GPs, who are often the first point of contact for many families, to develop a specialist interest in the care of young people with long-term conditions—including autism—by September 2015. Hon. Members may also have seen this week’s announcement by the Royal College of General Practitioners, which has launched a training programme for its members to improve the diagnosis of autism and support. I welcome that because when primary care is the initial point of contact for so many families, it is important that general practitioners have greater awareness and training in the challenges facing families with autism, and in how to recognise a child that may have autism.

The Government have provided grant funding to the Royal College of Paediatrics and Child Health to lead a consortium of voluntary sector partners and medical bodies to develop an extensive programme of resources—Disability Matters—to be launched in early 2015. It is designed not only for health professionals but for the wider work force that engages with children, and will help to raise understanding in the NHS about how to support families and young people with disabilities, including autism. Importantly, the more we do to educate not just the health work force but those who work with children with autism more generally, the more we will encourage early access to the support that those children and families need.

I commend the hon. Lady for her important and well-made case on behalf of her constituents with autism, and for raising an important matter about what has been unacceptably poor access to autism services in Hull for a number of years. I hope she is reassured that the CCG is beginning to make some progress, and I know that she and the right hon. Member for Kingston upon Hull West and Hessle, who is sitting next to her, will do all they can to hold the CCG to account. I know they will not hesitate to bring this matter back to the House if improvements are not made in the months ahead.

Question put and agreed to.