The Ombudsman's final decision:
Summary: I do not consider there was any fault in the way the Trust and the Partnership Trust decided not to refer Y for an autism assessment in June 2016. This was despite a lack of formal commissioning of autism assessments at that time. However, I consider the Trust took too long to send Mrs X the write up of the June 2016 screening which caused her frustration.
- Mrs X complains about the actions of North-East Lincolnshire Council (the Council), North-East Lincolnshire Clinical Commissioning Group (the CCG), Northern Lincolnshire and Goole NHS Foundation Trust (the Trust) and Lincolnshire Partnership NHS Foundation Trust (the Partnership Trust).
- Specifically, Mrs X says there was a five-month delay between April and September 2016 in diagnosing her son’s (Y) high functioning autism by the Trust and Children and Adolescent Mental Health Services (CAMHS), part of the Partnership Trust. Mrs X says the lack of commissioning limited the number of children passing into CAMHS for a full Autism Spectrum Condition (ASC) assessment.
- Mrs X says her son did not receive support for his high functioning autism between April and September 2016.
- Mrs X says she would like improvements to the ASC pathway so this does not happen to other children and families.
The Ombudsmen’s role and powers
- The Ombudsmen have the power to jointly consider complaints about health and social care. Since April 2015, these complaints have been considered by a single team acting for both Ombudsmen. (Local Government Act 1974, section 33ZA,as amended, and Health Service Commissioners Act 1993, section 18ZA)
- The Ombudsmen investigate complaints about ‘maladministration’ and ‘service failure’. We use the word ‘fault’ to refer to these. If there has been fault, the Ombudsmen consider whether it has caused injustice or hardship (Health Service Commissioners Act 1993, section 3(1) and Local Government Act 1974, sections 26(1) and 26A(1), as amended).
- If it has, they may suggest a remedy. Our recommendations might include asking the organisation to apologise or to pay a financial remedy, for example, for inconvenience or worry caused. We might also recommend the organisation takes action to stop the same mistakes happening again.
- If the Ombudsmen are satisfied with the actions or proposed actions of the bodies that are the subject of the complaint, they can complete their investigation and issue a decision statement. (Health Service Commissioners Act 1993, section 18ZA and Local Government Act 1974, section 30(1B) and 34H(i), as amended)
How I considered this complaint
- I have considered the complaint information Mrs X has provided to me. I have asked the Council, the CCG, the Trust and the Partnership Trust to comment on the complaint, and provide supporting documentation. I have taken the relevant law and guidance into account.
- I have written to Mrs X, the Council, the CCG, the Trust and the Partnership Trust with two versions of my draft decision and considered their comments.
What I found
- In 2011, the National Institute for Health and Care Excellence (NICE) issued guidance on autism in young people, ‘Autism in under 19s: recognition, referral and diagnosis’. This guidance recommends setting up a local pathway for recognition, referral and diagnosis. In particular, the guidance suggest a local multi-agency strategy group is set up. This group should include a:
- Paediatrician and/or child and adolescent psychiatrist
- Speech and language therapist
- Clinical and/or education psychologist
- The severity and duration of the signs/symptoms
- The extent to which the signs/symptoms are present across different settings (for example, home and school)
- The impact of signs/symptoms on the child or young person and on the family or carer
- The level of parental or carer concern, and if appropriate the concerns of the child or young person
- Factors associated with an increased prevalence of autism
- The likelihood of an alternative diagnosis
- The General Medical Council (GMC) produced ‘Good medical practice’ in 2013 which described what it meant to be a good doctor. Included in this guidance it says: ‘You show make records at the same time as the events you are recording or as soon as possible afterwards’.
Delegation of duties
- Section 75 of the NHS Act 2006 allows NHS organisations and councils to arrange to delegate their roles to one another. These arrangements are known as Section 75 arrangements, and under them NHS organisations can take on providing social work services which are normally the responsibility of councils. Subsection 5 of section 75 says the NHS and councils remain liable for the exercise of their own roles.
- The CCG delegates responsibility for children’s health service commissioning to the Council. In turn, the Council delegates commissioning for adult social care to the CCG. This is done with the aim to provide an integrated service for the people of North-East Lincolnshire.
The diagnosis of Autistic Spectrum Conditions (ASC) in North-East Lincolnshire
- From 2012 to the end of 2015, CAMHS provided the service to diagnose ASC in North-East Lincolnshire. However, at the end of 2015 CAMHS faced capacity issues and told the Council it would not be providing the ASC service. Between January and June 2016, nobody was formally commissioned to provide the ASC assessment and potential diagnosis service. However, the Trust still accepted referrals and provided an ASC service during that period.
- In July 2016, the Council specifically commissioned CAMHS (and funded by the CCG) to provide ASC assessments, diagnoses, and support. The CCG set up an interim pathway to access ASC diagnosis for children. The process was as follows:
- Referral from a GP.
- Early screening by a paediatrician at the Trust. If there was no evidence of ASC, a team of professionals would identify ways to meet the child’s needs. If there was evidence of ASC, the paediatrician would refer the child to the ASC clinic.
- Joint assessment in the ASC clinic at the Trust by a paediatrician and a CAMHS psychologist. They would either diagnose or not diagnose ASC. If there was a diagnosis or not at the clinic, they would identify ways to meet the child’s needs.
- There was one route in to the pathway – the Families First Access Point. At this stage, information will be obtained from various sources to decide what referral to make next.
- The Access Panel would decide if the child met the criteria for a referral to the joint paediatric clinic
- Awaiting the result of the assessment, a package of care would be completed for the child and a lead professional in the Paediatric department would continue to provide support to the child and family.
- The Trust’s paediatrician’s reviewed Y following a GP referral in 2013, when they first diagnosed him with dyspraxia, anxiety and emotional difficulties. The Trust then reviewed Y five times until April 2016.
- At the time of the matters complained of Y was 14 years old.
- In April 2016, a locum paediatrician at the Trust reviewed Y. The paediatrician referred Y to the ASC clinic for a screening appointment by another paediatrician and a CAMHS clinical psychologist (employed by the Partnership Trust).
- In June 2016, a different locum paediatrician and clinical psychologist reviewed Y before deciding if he should be referred to the autism team. They said “He has a background of Dyspraxia which could be contributing to some of his difficulties. He certainly does not fulfil the criteria for Autism Spectrum Disorder”. They made referrals to CAMHS for anxiety, and to the school nurse for counselling. The Trust confirmed the diagnosis by letter, which Mrs X received on 13 August.
- On 16 August CAMHS received the paediatrician’s referral. CAMHS rejected the referral, as it wanted to see how well school counselling worked for Y first. Mrs X later said school counselling had been previously unsuccessful.
- On 1 September 2016 Mrs X wrote to a paediatrician at the Trust. She was unhappy with the lack of an ASC diagnosis, and did not agree dyspraxia was causing her son’s problems. She sought another assessment for her son. Also, in September, Mrs X (as lead petitioner) and a group of residents put in a petition to the Council as they were unhappy with the local arrangement for diagnosing ASC in children. In response, the Council arranged a scrutiny group to complete a report on the gap in ASC assessments in North-East Lincolnshire. The scrutiny group would report its findings back to the Council’s cabinet.
- On 5 September 2016, after a phone call with Mrs X, a paediatrician at the Trust diagnosed Y with high functioning ASC with dyspraxia. This assessment considered his social problem, communication, interaction and imagination. Also, Y’s delayed speech and language with his high educational performance showed he had high functioning autism.
- The Trust followed up Y in the paediatric clinic after his diagnosis. He later received support from CAMHS for his anxiety in early 2017, and had counselling at school.
- In May 2017, the Council and CCG provided a joint response to Mrs X’s complaint. As Mrs X did not give the CCG permission to access her son’s medical records, it could only provide Mrs X with general comments on the ASC pathway. It said:
- There was a gap in providing ASC between January and September 2016. Then the CCG, the Council, the Trust and the Partnership Trust were all trying to agree an interim measure.
- From September 2016, there was an interim service for the diagnosis of ASC in children aged 5 to 16.
- The first appointment with a paediatrician was a screening for ASC. If there were signs of it, the child would pass through to a full assessment.
- A new single access pathway for ASC from March 2018
- A review in July 2018 to outline progress with the new pathway
- Future scrutiny of provision for support and diagnosis for ASC include SMART targets, key performance indicators, and benchmarks.
- Provide support and diagnosis (if suitable) to those families who feel they have not been helped in recent years
- Rationalising or limiting the number of parenting courses prescribed to a single family
- Independent expert review to consider the effectiveness of the Council’s approach to supporting children/families affected by ASC.
- The CCG are accountable, and the Council responsible, for developing the ASC pathway in North-East Lincolnshire.
- I consider there were fundamental flaws in the North-East Lincolnshire’s ASC pathway both before and after July 2016.
- Before July 2016 there was a gap in commissioning ASC services. No organisation was responsible for providing this service, despite the Trust and CAMHS still carrying out joint assessments for ASC.
- Before the Trust agreed to carry out an autism assessment of Y, a paediatrician (from the Trust) and a CAMHS psychologist (from the Partnership Trust) reviewed Y. This was in line with the NICE guidelines. They concluded Y’s signs/symptoms could be explained by his dyspraxia and anxiety. I do not consider the Trust’s actions were fault.
- A separate paediatrician later diagnosed Y with high functioning autism in September 2016, after Mrs X requested a reassessment. The consultant made the diagnosis separate from the temporary ASC pathway at that time. Also, the diagnosis was not in line with the NICE guidelines. However, this benefited Mrs X as she received a diagnosis of autism for Y.
- Also, after the ASC screening in June 2016, the Trust took six weeks to write up the outcome of the assessment. This was an avoidable delay, and not in line with the relevant GMC guidelines. I consider that six-week delay was fault. While Mrs X was aware of the outcome of the June 2016, I understand this wait for the written outcome would have caused Mrs X frustration.
- Within four weeks, the Trust apologise to Mrs X for the frustration caused by delays in sending the June 2016 ASC screening outcome.
- The Trust should confirm to the Ombudsmen when it has completed this recommendation.
- I do not consider gaps in the formal commissioning of ASC assessments had any adverse impact on Y. In June 2016, the Trust was still accepting ASC assessment referrals. The Trust screened Y before referring him to the autism team, and this was in line with the relevant guidelines.
- However, the Trust took too long to complete its write up of the June 2016 ASC screening outcome, which was not in line with the relevant guidelines. This caused frustration to Mrs X.
Parts of the complaint that I did not investigate
- Mrs X would like me to investigate the delay in diagnosing her son’s high functioning autism back to 2013. I consider Mrs X had the opportunity to raise this complaint earlier. Mrs X has not provided any exceptional reasons why we should look at the complaint dating back to 2013. Therefore, I do not consider we should be investigating the delay going back to 2013.
Investigator's decision on behalf of the Ombudsman