South West Yorkshire Partnership NHS Foundation Trust (P-001030)

  • 1.	We have identified failings in the Trust’s communication with Miss E. Whilst we have not identified any concerns about the diagnosis it gave Miss E, we can see the information it provided caused confusion.
    2.	The Trust has not taken enough action to put things right. We have therefore decided to partly uphold this complaint. We have recommended the Trust acknowledges its poor communication and explains how it will improve this.
  • 3.	Miss E complains that after her GP referred her to the Trust for an autism assessment in 2018:
    •	The Trust did not address her concerns about its diagnosis of social anxiety.
    •	The adult Asperger assessment (AAA) in the Trust’s diagnostic report indicated she may have a diagnosis of Asperger’s but this is not the diagnosis she has been given.
    4.	Miss E says the Trust made her feel really uncomfortable at the appointments she attended and her diagnosis of social anxiety does not explain all of her difficulties. She believes she should have been diagnosed with autism and says the Trust’s diagnostic report confused her and her GP. She says she needs an accurate diagnosis so she can get the correct support.
    5.	Miss E would like acknowledgement from the Trust, further information about her current diagnosis and to be re-assessed for autism.
  • 6.	Miss E attended a screening appointment at the Trust in November 2018. The Trust decided she would need an autism assessment. It arranged follow-up appointments which took place between December 2018 and May 2019. As part of the assessment process, the Trust interviewed Miss E’s mother and conducted interviews with her former colleagues.
    7.	The Trust sent its diagnostic report to Miss E and her GP on 30 May 2019. The Trust said Miss E met the criteria for social anxiety disorder and did not meet the criteria for autism.
    8.	Miss E contacted the Trust in June 2019. She said she, her family, and her GP did not agree with the Trust’s diagnosis. The Trust felt it had met the expected standards of care.
  • 9.	In this investigation, we have considered the information provided to us by Miss E, her clinical records from the Trust, and the Trust’s complaint file. We have also considered the Trust’s correspondence with us about the care it provided to Miss E.  
    10.	We also obtained advice from one of our clinical advisers who is a consultant psychiatrist. Our adviser is suitably qualified and experienced to provide us with advice. 
    11.	We use related or relevant law, policy, guidance and standards to inform our thinking. This allows us to consider what should have happened. In this case we have referred to the following standards:
    •	National Institute for the Health and Care Excellence (NICE) clinical guideline 142: Autism spectrum disorder in adults: diagnosis and management, updated August 2016.
    •	General Medical Council (GMC) guidance on Good Medical Practice, 2013. 
    •	Our Principles of Good Complaint Handling, 2009. 
    •	The Local Authority Social Services and National Health Service Complaints (England) Regulations, 2009. We have referred to these as the NHS Complaints Regulations.
  • 12.	Miss E feels she should have been diagnosed with autism. There are different types of autism including atypical autism and Asperger's syndrome. Section 1.2 of the NICE guidance explains how to assess adults with possible and suspected autism.
    13.	Section 1.2.8 of the NICE guidance says
    To aid more complex diagnosis and assessment for adults, consider using a formal assessment tool, such as:
    •	the following tools for people who do not have a learning disability:
    o	the Adult Asperger Assessment (AAA; includes the Autism-Spectrum Quotient [AQ] and the Empathy Quotient [EQ])
    o	the Autism Diagnostic Interview – Revised (ADI-R)
    o	the Autism Diagnostic Observation Schedule – Generic (ADOS-G)
    o	the Asperger Syndrome (and high-functioning autism) Diagnostic Interview (ASDI)
    o	the Ritvo Autism Asperger Diagnostic Scale – Revised (RAADS-R)
    14.	The Trust assessed Miss E using the Autism Diagnosis Observation Schedule – Second Edition (ADOS-2) and the Autism Diagnostic Interview - Revised Edition (ADI-R). It also used the AAA tool. The Trust’s approach was in line with the NICE guidance.
    Adult Asperger’s Assessment (AAA) scores
    15.	In the AAA, Miss E scored 46 out of 50 on the Autism Quotient (80% of AS patients score 32 or more). She scored 16 out of 80 on the Empathy Questionnaire (80% of AS patients score 30 or less). Miss E scored 24 out of 31 on the Relatives Questionnaire (87.5% of children with AS score 15 or more). 
    16.	When considered in isolation, Miss E’s scores could indicate she may have a diagnosis of Asperger’s syndrome. Point 32 of the GMC guidance says doctors must give patients the information they want or need to know in a way they can understand.
    17.	The Trust’s report did not make any explicit reference to Miss E’s AAA scores and why these did not specifically indicate she has a diagnosis of Asperger's syndrome. It has since told us its ‘conclusions were reached after considering a wider compendium of information, which included AAA’. Our adviser said the Trust’s explanation is adequate as to why it concluded that Miss E does not have a diagnosis of ASD, despite her AAA tool scores being consistent with indicating a diagnosis of Asperger’s syndrome.  
    18.	However, the Trust does not believe ‘having a specific explanation about why their conclusions differed from the AAA explicitly is necessary or standard practice’. We do not consider this to be in line with the GMC guidance. This is a failing in the Trust’s communication.
    19.	Miss E says the Trust’s diagnostic report caused confusion. We recognise the Trust’s report should have been clearer. Had this happened, it is likely Miss E would have understood why she was not diagnosed with Asperger’s syndrome. We hope our analysis will provide some clarity for Miss E. We have made recommendations to ensure the Trust learns from this complaint.
    Concerns about diagnosis of social anxiety disorder
    20.	After the Trust diagnosed Miss E with social anxiety disorder, she told the Trust she was unhappy about this. Our Principles say organisations should consider the complainant’s views, investigate complaints fairly and give clear, evidence-based explanations for their decisions.
    21.	The NHS Complaints Regulations say complaint responses must include ‘the conclusions reached in relation to the complaint, including any matters for which the complaint specifies, or the responsible body considers, that remedial action is needed’. The Trust’s complaint response did not specifically refer to the diagnosis of social anxiety disorder. This was not in line with our Principles or the NHS Complaints Regulations. 
    22.	The Trust has since told us examples of how Miss E meets the diagnostic criteria for social anxiety disorder ‘are scattered throughout the report’. It said this was why no further explanation was given in the formulation section of its report. This was not in line with the GMC guidance on communication so this is another failing.
    23.	The Trust should have included its justification for making the diagnosis of social anxiety disorder in the formulation section of the assessment report. This would have helped Miss E understand how the Trust reached its decision.
    24.	Our adviser said the examples in the report are sufficient to explain why Miss E was diagnosed with social anxiety disorder. As such, we cannot say there is any indication of a failing in the diagnosis given by the Trust. We understand Miss E may disagree with this.
    25.	The Trust told us ‘the fact that the reasons of the social anxiety disorder were so exhaustively discussed with Ms E during her last appointment may have led the authors to a sense of false assurance and therefore not fully listed them as well as [you] have suggested in the formulation section of the report.’ We have made recommendations to the Trust to ensure its communication is clearer in future.
  • 26.	In considering our recommendations, we have referred to our Principles for Remedy. These state that where poor service or maladministration has led to injustice or hardship, the organisation responsible should take steps to put things right. 
    27.	Our Principles say that public organisations should seek continuous improvement and should use the lessons learnt from complaints to ensure they do not repeat maladministration or poor service.
    28.	In line with this, we recommend the Trust writes to Miss E within one month of the date of this report. It should acknowledge the failings we have identified in its communication and explain what action it will take to ensure its communication is clearer. The Trust should send a copy of its letter to us.