Liaison Meeting with MPFT CYP Autism service.
On Thursday I met with representatives from the CYP Autism team for one of our regular catch-ups, and was brought up-to-date with developments around the new autism pathways. We discussed a few other issues too, and below is a summary of our discussion.
Liaison Meeting with MPFT CYP Autism service.
Today I met with Debbie Llewlleyn-Sims and Jenny Dennis from the MPFT CYP Autism Team.
Debbie and Jenny were able to update me on the new assessment pathways for autism that have been developed and should be in place from October 1st.
They described having a wider MDT team than ever before, with more psychologists, assistant psychologist, a consultant psychiatrist, Nurses and plus more OT and SALT input.
They hope that this will improve the efficiency and quality of the assessment service.
Their aim is to ensure that every young person’s assessment is a more individualised experience than it might have been previously. They wanted to change the ‘one size fits all’ approach.
There will be three pathways, colour coded to easily identify the route for a particular child or young person.
ORANGE – Under 5s
AQUA – over 5s where there is already a lot of evidence, they might have been seen by lots of people previously and have a more straightforward presentation of autism.
PURPLE – for children and young people with a more complex presentation: for example, where other factors such as trauma might be impacting them; where there might be other co-conditions; in the case of girls who don’t present obviously; in the case of CYP who present differently in different environments.
It is also possible for CYP to move from Aqua to Purple. One important change is the UNDER FIVES WHO ARE ON THE ORANGE PATHWAY WILL CONTINUE ON THAT PATHWAY EVEN IF THEY TURN FIVE WHILST WAITING. Previously some children had fallen through the net by being taken off that pathway when they aged out.
Every referral will go before a pre-assessment panel to determine which pathway they need to follow and what their individual assessment will look like, including what appointments and assessments they require, for example if there are concerns around a possible Speech Disorder then a Speech and Language Therapist would complete some of the assessment. This panel takes place 12 weeks before their initial appointment.
There will still be a place for the teacher liaison form but it won’t be preventative. NAS Stafford have long argued that teacher input shouldn’t gatekeep assessment pathways and we are really pleased to see that although they will still be used to inform and provide evidence, they will not be used as a basis to reject a referral. If these forms are not returned, CYP team will chase them up, and they can also alert families that school needs to complete them. They will seek more information from parents and other settings too if required, to ensure that they are getting as full a picture of the child’s presentation as possible.
The team has also changed the teacher liaison form so that it is more in-depth, not just asking for a broad statement but is more probing of a child’s presentation in school. The team acknowledges that teachers are not clinicians and that a clinician can more easily understand behaviours and responses of children, so school observations are important. They also recognise that masking takes place in schools so if the observer can’t really see any evidence of autism, or not enough, then as part of the assessment process the team will follow up with an observation elsewhere as required.
The CYP Autism team also recognises that for some children an ADOS tool is not appropriate, especially if they have significant global developmental delay or have ADHD/Behavioural concerns. If they can’t engage with the ADOS process, then there will be an alternative way of assessing through observations, for example in school or nursery. Also, if a clinic-based ADOS assessment is not conducive to completing the process, ADOS could be done at schools, where the school is able to accommodate the team.
Each assessment pathway will have a mix of different professionals dedicated to that pathway.
For CYP on the purple pathway all full assessments tools will be used and completed and school observations undertaken for most Children and Young People. For those not in education the team will seek to do observations in other settings such as playgroups, or home ed groups or similar. Family history of autism will be considered, as will RIO records held by MPFT.
Jenny stressed that the referrer needs to provide as much evidence as possible but that they won’t reject a referral because of the initial lack of evidence from the referrer and their admin team will chase evidence as much as possible. They will always seek to bolster the assessment process. Again, for children not in a formal educational setting, the team will work with the parents to see the child or young person in other settings.
As for the under-5s, CYP Autism team are currently concluding a pilot where they held a robust MDT meeting with professionals from Community Paediatrics and CYP Autism Service for 10 of their longest waiting five-year-olds in a particular area who had been seen by multiple agencies/professionals. They were able to give five of them diagnoses at the MDT meeting because of the wealth of evidence which included an up-to-date Teacher Liaison form, and for the remaining children they were able to identify what further assessments they required to inform a decision. Again, the emphasis is on collecting a wealth of robust evidence and information.
For under-fives on the orange pathway there will now be face to face initial appointments involving two clinicians. They will take a developmental history and do play-based activities again, possibly in family hubs, moving away from the current TEAMS calls. Some won’t need more assessments to be completed and can be discussed at MDT meeting straight away whereas others will need nursery or school observations, a home visit or an ADOS.
The CYP Autism team are trying to do more liaison with the Early Years CAMHS and will have an Early Years CAMHs team member sit on the MDT board for the under-fives; they will also meet once a month to share information and ideas. In October there will be a big Autism and CAMHs conference which NAS Stafford will attend with their stand.
We spoke about the disconnect still felt by some families between CAMHs and CYP Autism, and the need for more discrete Mental Health support for autistic people. Jenny acknowledged the difficulty around the phrase ‘All in the context of autism’ and they are trying to bridge some of that gap with CAMHs colleagues, building up links and spreading knowledge. It was felt that a few case studies around families seeking and not getting MH support from CAMHs because of an autism diagnosis would be helpful.
Debbie and Jenny were keen to stress the importance of early intervention; to try to be preventative rather than remedial in approach and working in consultation with other professionals, including the Learning Disability team.
We discussed the wait times and it is positive that triage wait times have dropped from 26 plus weeks to 2-4 weeks. However, we are still seeing wait times for full assessments of around two and a half years, which is not dissimilar to other areas of the country.
With this in mind we talked about private assessments and the issues around rejection of private assessments. Jenny explained that the checklist for parent and carers around what to look for when choosing a private provider will be ready soon, it should be agreed next month. I raised the issue from a few members who had had initial rejections; one of them being accepted once the providers reached out to MPFT to further explain their process. Jenny said that every other week a group of her most senior clinicians look through the private assessments that come in to them to check that they are NICE compliant, and that assessments are not, for example, carried out by Lone Clinicians. Hopefully the checklist will help to resolve some future issues but if a private assessment is rejected, if it is rejected then Jenny advised that the team will write to the private provider to ask for further information; private providers can also reach out to CYP Autism team and explain their approach in more detail, as was the case with our member, whose rejection was subsequently overturned. Jenny expressed that by reviewing the private assessments and diagnosis the team are acting in the best interests if the child or young person to ensure it is the correct diagnosis and decision for them so that the right support can be put into place.
It was a constructive and positive meeting, revealing some real improvements on the current process, including recognition of different presentations, in girls and those with co-occurring conditions, and the pathway for the ‘turning fives’ remaining consistent. Also useful is the recognition of CYP not in formal education needing different approaches and changes to the way school liaison forms are worded and used. We hope that the emphasis on collecting evidence will enable more children and young people to get the appropriate support they need.