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Hull MP tells Commons about state of services in Hull for children with autism

Hull North MP Diana Johnson made the speech below in her adjourment debate on the Diagnosis of children on the autism spectrum in Hull.

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, due 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 CAMHS 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?

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.

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