Autism: Diagnosis of Children, Hull

Diana Johnson Excerpts

Monday 5th January 2015 Commons Chamber

[Diana Johnson (Kingston upon Hull North) (Lab)]

First, I would like to thank you, Mr Speaker, for selecting for the Adjournment debate this evening the important subject of the unacceptable length of time families in Hull are having to wait for a diagnosis of autism for their children. It is an issue I have grown increasingly concerned about over the course of the past year.

I was first contacted in spring 2014 by constituents about how long they were having to wait for a diagnosis. The National Institute of Health and Clinical Excellence produced a report in 2011, “Autism: Recognition, referral and diagnosis of children and young people on the autism spectrum”, which states that

“the autism diagnostic assessment”

should start

“within 3 months of the referral”.

The three-month target has since been reinforced by a NICE quality standard on autism, but the service level agreement set by Hull NHS clinical commissioning group is for children to be assessed within 20 weeks of referral, and what is actually happening is very different: families are waiting for well over 12 months, and even for 18 months, to get the diagnosis.

I am particularly concerned about the role of Hull clinical commissioning group, whose job it is to make sure that health services are available and delivered to the local population in a timely manner. I believe the CCG is failing to do that in relation to diagnosing children with autism. It appears not to have a plan on how to tackle the backlog and is also failing to communicate with parents about how long they will really have to wait for a diagnosis. I hope that tonight the Minister will be able to reassure me and my constituents that he will take action on the growing problem in Hull—and, I believe, in other parts of the country.

[Jim Shannon (Strangford) (DUP)]

I congratulate the hon. Lady on bringing this matter to the House for consideration. She has eloquently outlined the position in Hull. Across Northern Ireland, we have had a 67% increase in the number of individuals with autism and we have 1,300 children waiting to be assessed. The problems in Hull are replicated across the whole United Kingdom. One way in which the issue can be highlighted is, of course, through education in schools and hospitals, but the recognition of Dr Cassidy, chief executive of Autism Northern Ireland, in the new year honours list was another step in raising the profile of those with autism across the whole United Kingdom, but especially in Northern Ireland.

[Diana Johnson]

I am grateful to the hon. Gentleman for that intervention, which sets the context very well.

Let me tell the House about the experience of three families in my constituency and what the delays actually mean to families and children in Hull. Jayden was three years old when his family first contacted me. His mum, dad and grandmother were desperate to make sure that Jayden received the help he needed. His parents had tried to arrange an assessment with the autism panel in Hull. Without that diagnosis from the panel, Jayden’s parents could not access the specific local services that he needs. They were told that even if they obtained a private diagnosis from a doctor, it would not be acceptable.

Jayden’s parents have found the whole situation very difficult, and I know that Jayden’s grandmother, Mrs Spivey, has really tried hard to fight for her grandson to get the help he needs. Despite initially being told that it would take 20 weeks for a diagnosis to be made, Jayden’s parents were eventually told that in fact it would take 57 weeks. Jayden is now four years old; he still has no diagnosis and he has no speech. His family wanted him to attend the Early Bird programme, an early intervention scheme, but this is available only to children who have received a diagnosis, and Jayden is still waiting.

Thomas is 11 years old. His parents contacted me in June 2014. They believe that Thomas is on the autistic spectrum and have been trying for several months to obtain support. Thomas is high functioning and the long delay is adding to his anxiety. Thomas was referred to the autism panel in October 2013 and his parents were advised by child and adolescent mental health services that, owing to the severity of his needs, he would be seen within 12 weeks. His parents have now been told that he is on the February 2015 list to start his assessment—15 months since the referral. This is what his parents say:

“Thomas is suffering, he is an intelligent, beautiful little boy whose world is collapsing. He is confused by the behaviours he displays and cannot understand the responses which other people present. He is lonely and desperately in need of support. Likewise we are a family in crisis. We feel that Thomas deserves to know why there is insufficient funding to provide the diagnosis he so desperately needs. A diagnosis would bring him support and access to services which he needs to function.”

Thomas’s parents have had little contact from the CCG. They too were initially told that the waiting time was 20 weeks.

Isaac is three years old, and he suffers from severe social and communication difficulties. His parents requested an assessment for autism/sensory processing disorder He was referred to the autism panel in January 2014. His parents were initially told that he would be assessed within 20 weeks, but they have now been told that it will be Easter 2015 before he is assessed. Isaac’s parents were particularly concerned about applying for schools for him in September without having a formal diagnosis in place.

These families in Hull are clear examples of unacceptable and lengthy delays in a diagnosis of autism causing real stress, hardship and worry to families, as well as to the children themselves who are missing out on services and help.

[Alan Johnson (Kingston upon Hull West and Hessle) (Lab)]

My hon. Friend is making a very powerful case. Does she remember that we were told that the review of child and adolescent mental health services in Hull in 2013 that led to the closure of the tier 4 unit—the in-patient facility at West End—was designed so that more resources could be put into early assessment and early diagnosis? Does she believe that we now have the worst of all worlds, with no in-patient CAMHS unit and still a very poor assessment and diagnosis time scale?

--- Later in debate ---

[Diana Johnson]

I am grateful to my right hon. Friend, who powerfully makes his point about how we are now in the worst of all worlds, with the early intervention not being there and the in-patient unit having been lost as well.

The Government have talked at length about the strength of early intervention and how important it is, and we would all agree. We know that the sooner children get help, the better the outcomes for them.

After raising my concerns with the clinical commissioning group on behalf of constituents in April last year, I was told that the waiting time for an assessment in Hull was approximately 14 months, not the 20 weeks that the CCG was telling people. The CCG told me that a number of issues had affected the delivery of the service. First, it said that there was an unexpected and significant increase in the number of referrals to the service, which in some months had tripled based on 2013 activity. It said that there had been several unanticipated changes in the staffing and resources for the lead organisation. It referred to the flooding of a children’s centre and classroom at Walker street, in the constituency of my right hon. Friend the Member for Kingston upon Hull West and Hessle (Alan Johnson), that is used by the autism service. It also said that the availability of specialist knowledge, skills and experience required to make a diagnosis of autism to meet the increased number of referrals had been lacking. The latest information that I have received indicates that the long wait has not improved in the past nine months—in fact, it looks as though it is getting worse—and yet families are still being told about the 20-week standard when they are first referred.

In a letter dated 20 May 2014 from Emma Latimer, the chief officer at Hull CCG, I was told:

“The CCG is working closely with the Humber NHS FT provider services to further understand the issues relating to the increasing waiting times for children and young people that are beyond the commissioned 20 week pathway.”

In a further letter from Emma Latimer dated 8 August 2014, I was told:

“As a result of recent pressures the whole assessment pathway was reviewed by commissioners and the service providers in early June 2014. We are working with the service to increase capacity in this specialist area and increase the number of assessments which can be undertaken. As well as exploring ways of working in order to expedite the process whilst maintaining the quality of the service. The changes proposed include a system to assist administration and aid report writing. These will release time for clinicians to conduct some more assessments.

As Commissioners we are prepared to fund additional clinicians to conduct the assessments; this may include utilising other health care providers who already work closely with the Autism Team, including our local authority colleagues/services.

We will continue to look for every opportunity to increase the resource in the Autism Team, and will continue to work closely with our providers in order to achieve a high standard of assessment in a more timely manner.”

However, I had sight of a letter dated 28 October 2014 to a parent from the Humber NHS Foundation Trust, from which the situation appears very different. Philip King, the interim director of nursing, states:

“The current position is that Humber NHS Foundation Trust prepared a business case for additional staffing which was sent to the Clinical Commissioning Group (CCG) for consideration over the summer. At the steering group meeting in September 2014 our staff gave the CCG an additional paper outlining the staffing needed to address the waiting list in addition to the staffing needed to meet the demand for the assessment service. A range of solutions for the capacity issue have been discussed openly with the commissioners who continue to communicate that they do not wish the service to change the level of assessment which is offered and is NICE compliant (although not to its timescales for waiting times).”

The letter goes on to say:

“As of today”—

this is 28 October—

“the Trust has not heard from the CCG regarding additional staffing capacity.”

I have been chasing the CCG ever since to see what has happened, and I have been fobbed off. I have been promised information and updates, but I never get anything, including today, when I approached the CCG again. The CCGs set up under this Government need to be challenged about providing information and being held accountable for the services they provide. Over the past nine months it has been very difficult to find out what is going on. That is why I have brought this matter to the Floor of the House for a Minister to hear what is happening in CCGs.

I am very concerned that Hull CCG is failing to tackle the problem and since the summer has been dragging its feet on making a decision on a business case that has been prepared to increase capacity. I am aware that the NICE three-month target for diagnosis is consistently not being met across the country. A survey conducted in 2011 by the National Autistic Society found that 48% of parents had to wait over a year for their child to get appropriate support, with more than a quarter saying that they had to wait over two years. In the same survey, 69% of parents said that their child’s educational progress had suffered because of a lack of timely support, and three quarters said that a lack of support had harmed their child’s social and communication skills.

It is clear from the local cases I have referred to this evening that delays in obtaining an assessment can have a negative impact on a child’s education and development. So what can be done? First, Hull CCG needs a clear plan of action on how to tackle the backlog in diagnosing autism, and it needs to respond to the business case prepared in the summer by Humber NHS Foundation Trust.

The National Autistic Society informed me that health services in Sheffield have achieved a significant reduction in waiting times by developing a dedicated diagnostic team, and ensuring that staff are not trying to do other jobs alongside playing a role in the diagnostic process. I want Hull to look at best practice elsewhere and have a clear plan of how to deal with the problem.

I am concerned about the ability of services in Hull to recruit and retain suitably qualified clinicians. This has been mentioned to me by a number of different organisations, and I believe that there is a real problem in Hull. There is a competing demand for the same staff from the local authority, as they are required to complete what used to be called statements of special educational needs. I would like to know from the Minister what steps the Department of Health can take to ensure that sufficient numbers of clinicians are being trained in Hull and across the UK.

Hull CCG needs to communicate better with parents so that expectations are realistic and based on honest information. I am disappointed to hear that the autism service is still sending out letters to parents which say that the waiting time for an assessment is 20 weeks.

The Government recently set up a taskforce on children’s mental health and well-being. Part of the role of the group will be to look at the most effective way of commissioning appropriate services for children and young people with mental health problems. Can the Minister say whether the taskforce on children’s mental health and well-being will look at the specific commissioning of autism services locally? Can he confirm that the taskforce on children’s mental health and well-being will look at the specific challenges facing children with suspected autism in accessing a diagnostic assessment?

In order to allow parents and stakeholders to hold local services to account, it is important that data on waiting times for the diagnosis of autism are routinely collected and published. The National Autistic Society has called for those data to be included in future revisions of health outcomes frameworks. What plans are there for including data on diagnosis of autism and waiting times in particular in the NHS outcomes framework and the CCG outcomes indicator set?

Finally, I have also been asked specifically to raise the issue of girls being diagnosed on the autism spectrum and then being able to access appropriate autism services after being diagnosed. What additional support is being given to girls? I hope the Minister can give my constituents some hope this evening that addressing the problems in diagnosing autism in children can be speeded up considerably in Hull and in other parts of the country and that children can start to access the services they need fully to develop and reach their full potential.

[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.