This dimension covers the degree to which the statistical product meets user need in both coverage and content.
Experimental Statistics
The statistics in this publication are marked as ‘Experimental’ and may be subject to further change as we develop these statistics. Experimental statistics are a subset of newly developed or innovative official statistics undergoing evaluation. The classification of Experimental Statistics is in keeping with the UK Statistics Authority’s Code of Practice. The ‘Value’ pillar in the Code of Practice advocates that as suppliers of information it is important that we continue “improving existing statistics and creating new ones through discussion and collaboration with stakeholders”.
Accordingly, these are published in order to involve users and stakeholders in their development, and to build quality at an early stage. It is believed that these statistics have immediate value to users; however, those users need to be aware of the statistics’ limitations and related cautions around their use, which are set out in this document, to make informed and qualified use of them. The methods used are still subject to regular evaluation and future modification.
Read the UK Statistics Code of Practice.
Content of this publication
Autism Statistics has been developed to help achieve better outcomes for children & young people and adults with autism. It provides data that will be used to commission services in a way that improves health and reduces inequalities and supports service improvement and clinical quality. This is done by capturing detailed information submitted about the patient (age, gender, ethnicity) along with submitted data at provider level. Further detail on the information captured within the MHSDS dataset.
The initial publication comprises of a set of 2 tables for each financial quarter, in Excel format with a web summary of key information based on those organisations that submitted data.
This release provides the latest information about the people who are in contact with autism services. This publication contains information based on total submissions for England and at provider level, but not all provider organisations are submitting data. Therefore, please treat these figures with caution. Where totals are presented for England, these are aggregate totals of the areas that submitted the relevant information.
There are currently 50+ tables in the MHSDS dataset that each contain information relating to a specific event or type of information that may occur during the mental health care of patients. Learn more about the dataset model.
Only a subset these tables have been used for this release as follows:
- Patient Details (MHS001)
- Referral Details (MHS101)
- Service Type Referred to (MHS102)
- Care Contact Details (MHS201)
- Primary diagnoses (MHS604)
- Secondary diagnoses (MHS605)
Information from these tables have been used to produce the following tables:
Table 1: Number of new patients referred for suspected autism within the reporting period and waiting times for first appointment (in weeks) by age, gender and ethnicity
Table 2: Number of new patients referred for suspected autism within the reporting period and waiting times for first appointment (in weeks) by provider
Reporting will change to include more data tables as data quality and coverage improves and hence increase the relevance of this report to reflect wider user needs.
Coverage – are all relevant providers submitting data?
All providers of NHS-funded specialist mental health, learning disability and autism services should submit to the MHSDS. At present only a small number of independent sector providers are making submissions, and this has an impact on coverage.
Generally, the number of service providers who have provided an MHSDS submission is monitored and reported in the MHSDS Submission Update which shows the number of providers submitting data each month and the number of records by provider and by table. Read these reports.
The submission report shows those providers providing a submission compared to those NHS Digital currently consider to be in scope for the collection. The providers considered in scope for the MHSDS have been determined through intelligence gathered from other national datasets and from information provided by national and local stakeholders. This list is subject to revision based on new intelligence received.
In order to be counted as providing a submission, only two of the data tables are mandated to flow each time any activity is reported within the MHSDS (MHS001; patient demographics and MHS002; GP registration). Completion of the remaining tables is only required when activity has occurred that is captured within these tables.
All providers of autism services are required to submit data if they provide this care. Diagnosis takes place across mental health, community and paediatric services and so it is difficult to determine an exact number of organisations that should be submitting autism data to the MHSDS. Work to determine which provider organisations should be submitting data for autism patients is ongoing, using other sources of information (e.g. National Autistic Society directory) as well as contacting providers directly. This will help build a clearer picture for future reporting.
As part of the MHSDS monthly statistics publication, national and organisation level data quality measures are shown that validate a selection of key data items by provider. These show the proportion of records as counts and percentages which have ‘valid’, ‘other’, ‘default’, ‘invalid’ and ‘missing’ values for key elements of the dataset, such as Primary Reason for Referral. These DQ measures need to be considered when interpreting these autism statistics.
Completeness
Completeness of submissions varies month-on-month by provider. Local knowledge may be required to assess the completeness of a submission, based on information about local caseload. This release provides detailed information about activity, which providers and commissioners are encouraged to review to ensure that submissions accurately reflect the local situation.
We have been able to group submitters into five categories:
- Non-submitters for anything autism related but do submit to MHSDS for other types of patients
- Partial submitters that submit autism referrals but nothing else
- Partial submitters that do not submit a primary reason for referral but do submit autism diagnoses (mostly with care contact dates)
- Irregular submitters i.e. don’t submit each month (this can include full and partial submissions).
- Good submitters that submit autism referrals, care contact dates and diagnoses information each month
Providers have been contacted in relation to non-submission, partial completion and low submission. Responses were summarised as follows:
- Confirmation that they do not provide autism services;
- Uncertainty around how to submit the data and advice has now been given, signposting to the autism guidance;
- That they do not have the relevant IT systems in place to provide all the relevant information for submission especially around coded diagnosis. For some providers, new systems are being introduced;
- Some providers assess patients as having suspected autism but seems there is confusion around recording this as a referral or onward referral especially where providers do not treat or formally diagnose patients for autism;
- Some providers are not able to record autism-specific activity in their local systems and still using broader category of ‘Neurodevelopment conditions’;
- Community hospitals have submitted data to MHSDS for autism but not sure if they should. This is where patients are presented to them with more than one health condition including autism with some of the patient pathway recorded in the Community Services Dataset.
As a result of the above findings, NHS Digital plan to:
- Review the current autism guidance for data submitters;
- Wait to see whether certain providers submissions improve following advice and guidance or following the introduction of improved data collection and IT systems;
- Produce an in-scope list of those organisations that provide autism services, so coverage and completeness are better understood.
Reporting requirements that cannot be yet met due to very low completeness are:
- Post-diagnostic outcomes which require completion of the Onward Referral table and an increased number of submissions for referrals for ‘diagnosed autism’ (code 26).
- Robust waiting times between referral and first care contact/appointment - current waiting times are based on length of time between the referral date and earliest care contact date submitted for each patient. This could be an initial assessment/triage appointment or a first treatment appointment. First treatment appointments could be a more robust measure for stopping the clock on waiting times but there is very low completion of the Consultation Type field which indicates whether the first appointment was an initial assessment/triage or a first treatment appointment. Therefore, all care contact dates have been used to stop the clock on waiting times.
Clinical codes used for autism diagnoses
In terms of diagnoses information, different clinical classifications have been used across providers. Some providers have submitted International Classification of Diseases Version 10 codes (ICD-10), some READ codes and some SNOMED codes. This analysis captures all classifications. For ICD-10 submitters, all F84.0 codes have been included which are all codes for autistic spectrum disorder. Read the list of all ICD-10 codes.
For SNOMED, the following concept IDs have been used:
Description
|
ConceptID
|
Active but odd autism (disorder)
|
|
Active infantile autism
|
191689008
|
Asperger's syndrome
|
23560001
|
Atypical autism
|
231536004
|
Autistic disorder
|
408856003
|
Autistic spectrum disorder
|
35919005
|
Childhood autism
|
43614003
|
High-functioning autism (disorder)
|
|
Infantile autism
|
408857007
|
Pathological demand avoidance
|
712884004
|
Residual Asperger’s (disorder)
|
|
Residual infantile autism
|
191690004
|
Suspected autism
|
401204006
|
The above codes have been mapped to READ codes to ensure all READ V2.0 and Read CTV3 codes are also captured.
From 1st April 2020, SNOMED completion will become mandatory which will help to standardise coding and reporting.