Agenda item

To consider a report and presentation on delivery of the Healios Pilot and re-designed pathway.

Consideration was next given to a related report on the redesign of the neurodevelopmental pathway. The presentation described the significant challenges that had led to the redesign and the progress that had been achieved. It was noted that formerly, the rate of referral that could be accommodated for assessment by the pathway was 15 children per month. The average referral rate was 50 per month, creating a considerable waiting list. In the six months that led up to school closures in early 2020, the rate had increased to an average of 69 referrals per month. Wait times are dependant on the child’s journey, and the interventions they have received previously, and what has been available to them in their particular circumstances. These are for autism, ADHD or both of these together. These variables make it difficult to calculate an average wait time, but it is known that the wait times are too long. Therefore a bid was completed for the digital pilot of HELIOS and the redesign was undertaken. The bid was for funding to add 180 assessment. Starting wit the families who had been wating longest, the waiting list was progressed. 220 families have requested digital pathways. Anyone waiting has begun to be picked up my HELIOS, working with the CCG and RDASH, who are putting in place a trust wide compact with several different approaches available.

Details regarding the impact on families and the breakdown of funding were also provided as part of the presentation. Initially the clinical team had been quite disconnected from the rest of the process and providers, and the emphasis was on clinical diagnosis. Therefore the new vision was to meet the needs of children who present with neurodiversity there is a network of support in place to put support strategies in place. Families can then decide whether to progress to a formal diagnosis or not.

Whole school approaches are being used in tandem with specialist approaches, provided free to schools at the point of access. Previously this was offered at a cost to school, but because of the funding in place, it can now be offered for free to schools.

A structured and consistent resource pack has also been developed. Some schools will provide a robust and secure response, while other schools may not be able to provide such a strong response. A website was provided that will provide the resources to any staff who are supporting children and who may themselves need support to access education.

The aspiration is that rather than training programmes sitting behind a diagnostic threshold, these trainings are now available without a diagnosis, and families can even self-refer. This removes previous challenges that prevented families from accessing support.

The clinical team was quite isolated from the rest of the team previously, which meant they did not have access to all the contextual information that is needed to feed into the diagnostic process. Part of the investment has enabled a multidisciplinary team to be established including a licensed clinical psychologist, and this team has helped with triaging and providing vital contextual information where more information is required for diagnostic work. This team also provides support and advice to families awaiting an assessment. In the new year, it is expected that more work will be done to find out how to provide additional support to people on the waiting list.

Between March and August, schools were closed; therefore, the rates of referral were reduced to 46 new referrals. It is possible to keep pace with the number of referrals. It is likely to be a three-year trajectory to progressing through the waiting list and ensure that it does not build back up.

In discussion, Members wished to receive clarification around the waiting times and the size of the waiting list. Members reiterated concerns that referral rates may likely go up. Officers responded that they were very concerned about the size of the waiting list, and all the leadership of the Rotherham Place Board are owning this situation and are investing in working to resolve it. The reduction in the waiting list relies on the team being able to manage the number of cases coming in. If previous levels of 69 referrals per month are seen again, this will create a problem for bringing down the waiting times. The money has been invested as effectively as we can, but the size of the challenge cannot be underestimated and has to be watched closely. Locally and nationally within this area, it is very specialised, and there have been challenges with recruiting. It is a national problem.

Further interpretation was requested around the recources required to respond to Rotherham’s statistical rate of autism diagnosis which is nearly twice the national average. The response from officers noted that it would be unlikely that the rates of autism in Rotherham would be significantly higher than other areas, but it could be that because of good practice and a strong parent/carer forum, awareness in Rotherham could be higher. There may be higher rates of diagnosis in Rotherham than in other areas, and for this reason, it is important to move support outside of the diagnosis threshold. This way strategies and resources that respond to the range of need are available regardless of whether the child has received a formal diagnosis. 

Members noted that scaling the response and support would be possible based on the current pathway and the changes that had been implemented under the redesign. The response from officers likewise noted that expanding would be possible although limitations on the capacity of the physical team and being able to recruit to expand the team might be difficult.

Is digital poverty a factor within the model in terms of parents and carers. The response from officers noted that any pathway or intervention that relies on people having the equipment and the data will have limitations as a result. The HELIOS platform relies on a certain level of technical equipment and data/broadband. One of the difficulties is that HELIOS cannot work with families who do not have that level of technology available to them. This is not unique to neurodevelopmental, and it is exciting to be able to move into digital as it potentially creates capacity, but we are mindful of families who are not able to access it this way. The other thing is it is about patient choice, and we are always offering the choice of digital but some families choose to wait for access to interventions by face-to-face means.

Members noted the progress that has been made and noted the positive trajectory over the years and anticipated in the years ahead. It was asked if the children are able to speak out clearly or if the parents speak over the children. The answer was offered in writing following the meeting.

Members also noted that the patient satisfaction rate dips slightly when the cohort is the largest, which suggests that the high approval numbers for small cohorts are much the same as the small cohorts and is genuinely positive.

More information was requested as to the support that is available to children and families while they await assessments. An information sharing agreement has been made between CAMHS and the Local Authority, to enable the team to see which schools the children attend, and whether early help or social care are involved. Those schools who have the largest number of children waiting for assessment were prioritised for group strategies for support, but as work in schools has had to be put on hold this year, it is work that will be revisited and continued.

Resolved:-

1.     That the report be noted

2.    That the next update be brought in 12 months’ time, and that information about support for children with learning disabilities be included in the report.