In attendance for the discussion were:
Philippa Coleman, Interim Lead Commissioner, Children's Community Health Commissioning Team, Children, Families and Communities Directorate
Stephanie Courts, Children’s Clinical Service Manager, Worcestershire Health and Care NHS Trust
Sally-Anne Osborne, SDU Lead for Children Young People & Families & Specialist Primary Care, Worcestershire Health and Care NHS Trust
A Notice of Motion from Council on 9 November 2017 was referred to the Board. It noted the length of time it could take in Worcestershire from referral to a diagnosis of autism and also the high demand for the Umbrella Pathway. The Board was asked to consider the outcomes of the recent review of the assessment and diagnostic pathway for children and young people who it was considered were, or may be, on the autistic spectrum.
Following the Review, a report to the Integrated Commissioning Executive Officers Group (ICEOG), which included representatives from the County Council and the Worcestershire Clinical Commissioning Group's, was made in January 2018. It agreed measures to manage the demand of the Pathway.
The Review included recommendations to ensure that appropriate referrals were made to and accepted on the Umbrella Pathway. Only when other possible causes had been addressed, appropriate support provided and there was a strong indication of possible ASD should a referral be made. This should ensure that the Pathway would be completed in a more timely way for those children who needed it.
The National Institute for Health and Care Excellence (NICE) guidance indicated that an autism diagnostic assessment should be started within 3 months of a referral to the Autism Team, however there was no recommended maximum timescale for completion of the process. The Umbrella Pathway currently complied with this standard in Worcestershire but the whole process could take months to complete and varied on a case by case basis. In most cases, the full assessment process could take about twelve months.
During the discussion, the following main points were made:
· As the assessments were multi-disciplinary and staff were integrated into various teams, it was difficult to quantify whether there was sufficient staffing capacity to cope with the number of assessments coming or likely to be coming through the system
· A year or in some cases more than a year to obtain an ASD diagnosis was a very long time for families to wait
· Nationally and locally there had been an increase in the number of referrals for ASD assessment. In 2016, the average number of referrals was 20, currently there could be 100+ a month, whereas the expected number of referrals was 40
· There was an increased emphasis on early intervention and a graduated response, which over time should reduce the number of full ASD assessments enabling them to be carried out in a more timely and efficient way for those who actually needed them
· It was unknown what the waiting times were for referrals in other authorities. Not all authorities had a formal assessment process in place, but waiting times were known to be a widespread problem
· There was a concern about the average age that a child received an ASD diagnosis on the basis that the sooner the diagnosis the likelihood of better outcomes for the child. The Board were advised that the age of diagnosis wasn't currently monitored, but anecdotally there didn’t seem to be a peak in any one age group.
· The Umbrella Pathway dealt with referrals relating to school age children and pre-school children were referred to the Child Development Teams
· A Member suggested that it was important not to jump to an ASD diagnosis, which could label a child for life. There were instances where parents believed that an ASD diagnosis was the way forward in order to access extra support or the benefit associated with the diagnosis. This however, didn’t address the need for other support services for example behaviour support
· Anecdotal evidence suggested that some schools advised parents to request an ASD referral for assessment in order to access support, however in some cases the children should be gettingappropriate support from other avenues and didn't necessarily need an ASD referral
· It was questioned how the varying length of time for cases between referral and diagnosis was dealt with and monitored. For example in November and December 2017, the time varied from 79 days to 721 days with 379 days being the average. In 2017, the average Pathway took 327 days. It was confirmed that monitoring did take place and exception reporting on those cases which had been in the system over 12 months
· It was noted that there was a spike in referrals from December 2016 when they were around 20 per month to 100 per month in February/March 2017. Officers suggested that this could be as a result of a combination of things: national publicity, the 'A Word' TV Programme and an increased number of referrals from GP's and Community Paediatricians possibly as a result of the system being made more open
· In order that referrals for assessment were more manageable, they needed to be triaged appropriately, so guidance was being given to GP's, SENCO's and other referrers about this
· When a referral for the Umbrella Pathway assessment was rejected, parents were quite often devastated. This shouldn’t mean however that just because a referral hadn't been accepted on the Umbrella Pathway that they couldn't access appropriate support for their child's difficulties, they should be signposted to appropriate support via their GP.
· In order to avoid raising expectations, prior to making a decision to accept a referral, additional information was now routinely requested
· Officers confirmed that other than referrals via Patient Advice and Liaison Service (PALS), there hadn’t been any analysis to understand the effect on families of a referral being rejected from the Umbrella Pathway
· In response to the question about whether schools were using Pupil Premium funding effectively to support children's needs, the Board were advised that a response from Babcock Prime as commissioners for education support would be sought
· Although no targets had been set, it was anticipated that there would be an increase in the number of children going through the Umbrella Pathway resulting with a diagnosis of ASD
· If a child went through the Umbrella Pathway but was not diagnosed with ASD, a report would still be shared with the family and their referrer (with their permission) and recommendations for appropriate support would be made
· It was hoped that by more appropriately meeting children's needs, families should be able to access appropriate support more quickly without needing an ASD referral as a trigger for this support
· If it became apparent that a referrer was regularly making inappropriate referrals, contact would be made with them to advise on the referral process
· It was confirmed that all referrals to the Umbrella Pathway were made with parental consent
· For those children with elective home education, it was confirmed that there was equal access to the Umbrella Pathway
· There was a concern that for those children who were receiving elective home education and received a late diagnosis of ASD it would result in them being educated by the medical education team
· The biggest issue with the Umbrella Pathway was ensuring that the right children were accessing it and that early intervention and a graduated approach to support was provided as soon as possible. This it was hoped would result only the children who needed an ASD assessment being referred to the Umbrella Pathway. Gathering appropriate information early on in the process would also help triage and to speed up the process
· There was an acknowledgement if a parent didn’t receive the expected diagnosis of ASD in order to access appropriate support for their child, their despair and devastation was probably as a result of an unmet need which needed to be addressed
· It was acknowledged that the effectiveness of the Umbrella Pathway was dependent on the effectiveness of other pathways
· Mechanisms were now in place to enable families going through the Umbrella Pathway to check on the progress of their assessment. Leaflets had been produced detailing the process but essentially contact could be made through an Administration Team at any time throughout their assessment journey and if they needed to speak to a professional then messages could be passed on. Contact could also be made via PALS
· In terms of how Councillors could help when they were in contact with schools, it was suggested that many schools were doing a fantastic job of appropriately supporting children and their families, but if Councillors became aware of any unmet needs and pressures they could ask schools how they would wish to be supported. This could then be referred back to the Commissioning Management Team rather than the clinicians who needed to be concentrating on supporting children and their families.
During the discussion some information was requested and some suggested comments were made for the Cabinet Member with Responsibility (CMR) for Children and Families.
· Waiting times for assessment in other local authorities
· The number of referrals for assessment which took over one year to complete
· Whether schools were using Pupil Premium funding effectively to appropriately support children's needs (Babcock Prime)
· The number of children who had received a late diagnosis of ASD and as a result were being educated by the medical education team
· What support was available for parents who electively home educate due to their children's SEND
· Average number of days taken to be assessed over a rolling 12 month period.
Comments for the CMR:
The Board during its discussion felt that it would be helpful if
· The age group of when ASD diagnosis was undertaken could be monitored
· Some analysis could be carried out of the effect on the family of a referral being rejected from the Umbrella Pathway for an ASD Assessment; and
· The outcome of referrals to the Umbrella Pathway could be monitored, especially as a way of measuring impact of changes made following the recent review.
In addition, it was agreed that the Children and Families Overview and Scrutiny Panel look would add the SEND Strategy and behaviour support to its Work Programme.
The Chairman thanked everyone for the useful discussion.