Autism: Diagnosis of Children, Hull — House of Commons, 2015-01-05
Topic: Health
Diana Ruth Johnson (Labour, Centre-left): 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