Agenda item

Ian Spicer, Assistant Director, Adult Care, Housing and Public Health to present a progress update.

The Cabinet Member for Adult Care and Health introduced the agenda item by started with an apology for the delay in producing a final version of the all-age autism strategy.  An earlier draft was deemed to need more focus on adults and concerns had also been raised that it was more of a vision rather than a strategy and plan, so this had led to further work.  The benefits of taking a co-production approach to development were highlighted even though it did take longer and although there had been the delay the additional work would mean a better result.

 

Our vision

To work towards making Rotherham an autism friendly place to live. This means a place where you can get a timely diagnosis with support, meet professionals with a good understanding of autism, find services, organisations and employers that make reasonable adjustments when required, where people can feel safe, have aspirations and fulfil their potential, and become a full members of the local community.

 

Guiding Principles

All autistic children, young people, adults and their families are at the centre of everything we do:

• Focus on individual’s strengths to overcome barriers
• Guidance, information and support are easily available
• Supporting individuals to live the life they choose
• The right support at the right time and making every contact count
• Increasing awareness of autism across Rotherham
• Ensuring a Person-Centred Approach for autistic people living in Rotherham

 

Diagnosis in Rotherham

·       Nationally and in Rotherham there has been an increase in requests for Autism Spectrum Condition (ASC) assessments for both children and adults.

·       The increase is because of increased awareness both by individuals themselves, their carers/family members and by the health, education and social care system.

·       More men than women are diagnosed with autism.  This is changing with increases in the number of women being diagnosed

 

Key Activity – Children and Young People

Working with partners, our voluntary organisations and community groups we have identified five priority areas on which to focus our implementation plan. Some examples of the operational activity that is underway are:

–       A digital diagnostic pathway has been commissioned from Healios who will support local CAMHS service

–       Planning is underway to re-design our C&YP pathway in 2020-21

–       Education settings have engaged in training, licensed by Autism Education Trust

–       New specialist education places have been created, at primary and secondary, for children with Autism

–       Rotherham Opportunities College offers local post-19 education provision

–       Project Search offers supported internships

–       Rotherham Parent Carers Forum are commissioned by Rotherham CCG to offer regular drop-in sessions to support families on the diagnostic pathway

 

Key Activity – Adults

• Planning to introduce a Rotherham based adult diagnostic and post diagnostic service from Q1 2020/21
• Will maintain existing capacity in Sheffield service for one year to ensure waiting list is managed.
• Launched Autism Alert Card – this was done in partnership between SYP, Police and Crime Commissioner, the Council, NHS and Rotherham NAS.
• Parent Carer Forum and VOICE co-chair the Autism Partnership Board

 

Priorities

·       Priority 1 Starting well - All Rotherham’s autistic children and young people are healthy and safe from harm.

·       Priority 2 Developing well - All Rotherham’s autistic children and young people start school ready to learn for life.

·       Priority 3 Moving on well to independence - All Rotherham’s autistic children and young people are ready for the world of work.

·       Priority 4 Living well - Autistic adults living in Rotherham will get the right support when needed.

·       Priority 5 - Autistic adults living in Rotherham will be better supported as they grow old.

 

Priorities 1 and 2 were included in a development programme led by Children and Young People’s Service (CYPS) but in very much a partnership approach.  Messages from the very successful “voices day” would feed into strategic planning and the importance of workforce training and development emerged as being critical to understanding the needs of children and young people with neurodevelopmental diversity and to be able to meet them.  Curriculum activity and workforce development in over 200 providers was already underway.

 

Priority 3 was where work was taking place on the new transitions pathway, formerly known as Preparing for Adulthood.

 

Priority 4 - Most people with autism were not eligible for health and social care support.  The ambition was to capture neurodiversity and enable people to live their lives how they wanted to do.  This would be through a strength and asset-based approach post diagnosis support service developed with partners which was intended to be in place by May 2020. 

 

Priority 5 - The Joint Strategic Needs Assessment (JSNA) identified the number of older people with autism – approximately 479 based on population prevalence.  Account needed to be taken of any adjustments to support needed as people with autism got older and this had been built into delivery plan.

 

Transforming Care

• Since 2015, Rotherham had been working on a national programme with Sheffield, Doncaster and North Lincolnshire to reduce the numbers of people with a learning disability who were detained in specialist hospitals – Transforming Care.
• Rotherham currently had 8 people detained in specialist hospitals - 4 people in hospital beds commissioned by Rotherham CCG and 4 people in hospital beds commissioned by NHS England.   
• Rotherham had successfully discharged 5 people back into the community over the last 2 years.   
• Rotherham will discharge a further 4 people in 2020/21.  The population had changed in that 3 people have autism and not a learning disability. A specialised housing and care support offer was required and had taken time to develop. 

 

Success Stories

·       Two people’s positive experiences were provided as examples.

·       New micro enterprises were becoming routine rather than the exception.

·       Contribution and sense of satisfaction of doing something

Autism Alert Card

·       Rotherham Council, South Yorkshire Police and Rotherham CCG have worked together to develop the Autism Alert Card. 

·       This will ensure the needs of autistic people are known by the police and criminal justice system. Previously a significant gap.

 

Ongoing Challenges

• Supporting wider services, such as leisure, and the community to be open to support people with autism: for the community to celebrate neurodiversity 
• Diagnosis and post diagnostic offer for Children and Young People and Adults – all age and alignment
• Rotherham CCG and RDaSH are working to create ‘all age’ solutions to address the diagnosis waiting list issues and develop a local post diagnostic offer for adults  
• Ensuring that the right support is available and is cost effective

 

Autism Strategy Progress and Timeline

• The Autism Partnership Board has supported the proposed implementation plan. 
• The strategy will be online and will be built around people’s stories.
• The strategy will be agreed by partners by April 2020 and presented to Cabinet in June 2020.
• It is planned that the strategy will be formally launched in July 2020.

 

It was emphasised that it was very much a partnership approach.  The aim was to produce an accessible and user friendly final version in an innovative way.

 

Further detail was provided to supplement the information in the presentation on key issues and Members probed into various matters.

 

Rotherham Clinical Commissioning Group (CCG) commissioned the children and young people’s diagnostic pathway from Rotherham Doncaster and South Humber NHS Trust (RDaSH) as one of the pathways in the Child and Adolescent Mental Health Service (CAMHS).  Officers acknowledged the current unacceptable waiting times for this diagnostic pathway and confirmed that the CCG had been working closely with RDaSH, education providers, Rotherham Parent Carers Forum (RPCF) and Healthwatch to understand the local dynamics and “over-subscription”.  Capacity for diagnosis was currently for 15-20 cases per month but referrals were in the order of 45-50 each month on average. 

 

As the waiting list would continue to grow if not addressed, work was underway both to increase capacity and to understand the high level of demand.  Rotherham was an outlier for autism spectrum prevalence at 3% compared with the national figure of 1.5% and in the recent annual schools Lifestyle Survey, 12% of respondents had self-identified, which was greatly above what was expected in terms of the number of children with autism and needed to be unpicked and understood.   Subsequently during the meeting it was felt that this 12% was from within the group of young people who had self-identified as having a mental health issues rather than 12% of the whole school population.

 

It was also important for children and young people to celebrate neurodevelopmental difference, which was not necessarily the same as a having or receiving a diagnosis of autism.

 

The CCG had increased capacity through an additional provider, Healios, working in partnership with RDaSH, who offered an on-line option for diagnosis It was confirmed that the digital diagnostic pathway approach had been used elsewhere and in Rotherham would join up with the current pathway, with parents offered a choice of which pathway they would prefer.  Healthwatch and RPCF were happy with the offer. Parents could use Skype technology to upload observations, for example by video clip, and some parents could see the benefit of this approach as it would show more typical behaviour in the child’s own home than it would be in a professional setting.  The contract with Healios was short term as a pilot for six months, but was flexible and had been commissioned by the CCG under one of its core standard contracts.  It was still early days and evaluation would follow. Dialogue was also still taking place with RDaSH around capacity but there were workforce challenges regarding NHS capacity for initial diagnosis, hence the need for external support and to reduce the waiting lists.

 

Members inquired about the length of time for diagnosis as anecdotally they understood it could take three to four years after the involvement of school and the GP, followed by learning support for a period of one-two years before referral to CAMHS for diagnosis. Recognition was given that this was the pathway for some families and that responses were inconsistent prior to referral on to the diagnosis pathway.  Strategies could be put in place before this by parents/carers and by education providers but variations existed between schools, so the aim was to increase consistency, so schools were well informed on how to respond to neurodevelopmental difference.  The aim was also to reduce the waiting times significantly once a referral had been made to CAMHS for diagnosis.

 

A graduated response was in place by schools and Early Help and it was difficult to quantify overall waiting times as these were not tracked at individual school level. The timescale could also vary because of differences in a child’s presentation and how the graduated response was delivered.  It was over one year once referred to CAMHS for formal diagnosis, which was too long, but people were still supported.  Support was provided during pre-diagnosis through regular drop-ins run by RPCF who provided peer support but also attended by CAMHS staff to provide advice and strategies for home and school.

 

The point was raised regarding support packages and post diagnostic support and the fact that change could be very unsettling.  This was being looked at and as stated above pre-diagnosis support would be from RPCF plus the Autism Communication Team.  Post diagnosis support could be through the youth group and the Autism Information and Advice Team, although potentially some of this post diagnosis work could be done earlier.

 

Members asked how schools would be made aware of what was available and were informed that a task and finish group had been established with a primary a secondary and a special school headteacher with communication outwards as they expanded awareness. Coupled with this was the wider work needed with the workforce in terms of awareness raising, which schools would also be very much involved in.

 

Two pathways for adults aged 18+ currently existed, one for people who also had learning disability (diagnosis would be through the Learning Disability service) and one for people without learning disability (through Sheffield).  The aim was to repatriate that activity to Rotherham to make a Rotherham Place offer for adult diagnosis.  The importance of post-diagnostic support was again emphasised.  People waited for 28 weeks on average, if they did not have learning disability, which exceeded the standard NHS 18-week target, but for those with both learning disability and autism it was quicker. Although no exact figures were to hand the feeling was that Rotherham was not an outlier at 28 weeks.  The first task would be to address the waiting list before commencing with the new offer so that a waiting list did not transfer to Rotherham from Sheffield. A twin track approach also using Healios was under consideration for adults as well to try and relieve some of the existing list pressures.

 

Early in the presentation a point had been made regarding diagnostic tools being developed primarily for men.  OSMB inquired whether any specific work had been undertaken on the issue of gender disparity or if it would be captured in the new service.  It was agreed that the diagnosis process itself might have gender bias but the current diagnostic manual was being looked at in relation to this issue by leading academics and any resulting changes would be implemented for future diagnosis in Rotherham

 

SEND sufficiency work had provided capital funding to develop the offer; including additional places at Waverley Primary and Wales High School for children and young people with a diagnosis of autism.   The implementation phase would see the offer increase further at Wales High and possibly to the development of a centre of excellence there.  The specialist resource was also being enhanced at Swinton High and Milton Special Schools.  Money had also been also invested in the post-16 offer which had been acknowledged as a potential gap, with places at Thomas Rotherham College for students to study for “A” levels.  25 places had been created at Rotherham Opportunities College (ROC) which were more for life skills and less academically focused.  ROC was located in the Sitwell area and linked to Newman School, providing an 18-25 offer. ROC and the Council had worked together to develop Project Search, a supported internship, with support tailored to individual needs such as travel training.  At present it was a small cohort with the aim to increase the numbers so more young people had the opportunity to continue their education and hopefully progress into employment.

 

From their work on the Adult Social Care Outcomes Framework HSC were aware that only 3.4% of people with learning disability were in employment in Rotherham. They were informed that the data system did not separate people with autism in employment from those with both autism and learning disability.  Work delivered through the Employment and Skills Strategy would seek to increase the numbers in employment. Members welcomed autism being treated as something discrete from mental health and learning disability and suggested work was needed with employers around jobs where having autism would be an advantage.  Speak Up emphasised the importance of the right support and reasonable adjustments in employment for employees both before getting a job and once employed.  Assistive technology such as the “Brain in Hand” app was also being looked at across the Integrated Care System.

 

It was confirmed that the Loneliness Strategy and Five Ways to Wellbeing initiative would connect in with the Autism Strategy.

 

In relation to Transforming Care, various reasons were given as to why people were in specialist hospitals including mental health, behaviour or contact with the criminal justice system. The composition of the Transforming Care Partnership may change because of the ICS but work would continue to develop specialist support including housing in the community to avoid the need for specialist in-patient beds.

 

Members asked if the Transforming Care programme had delivered any savings and if so where in the system.  Officers responded that this programme led to significant cost pressures in providing appropriate support but in terms of the ethos and the outcomes was the right thing to do. This additional cost fell to local health services and the Local Authority but some NHS programmes existed and it was a case of wait and see in relation to developments in the NHS ten-year plan.

 

Members sought clarification on the reasons for the time needed to get the specialist housing support in place and it there were financial issues.  Officers confirmed it was not for financial reasons but rather having the right skills and specialist housing design and providers with the right ethos and skills to ensure places would be sustainable.

 

The Autism Alert Card would enable people to get support and help to identify needs.  A rolling training programme developed by South Yorkshire Police underpinned it and by 1^st March, 2020 the first priority cohort would be trained comprising first contacts, PCSOs and staff at the detention suite. The card would be launched in Rotherham on 2^nd March in conjunction with the launch of the Safe Places Scheme. 

 

Speak Up asked how the card would be publicised as a couple of people had reported difficulties in finding out more.  Publicity would on-line and through the Autistic Society.  Officers would also liaise with Speak Up to ensure people knew how to obtain a card and would feedback the issue raised.

 

Members were given assurance that the timescale outlined for the strategy would be met. Content had been signed off and it was not about going through due process.

 

A query was raised as to whether Kilnhurst still has a specialist unit and given the importance of priorities 1 and 2 if specialist nursery provision was in place.

 

Officers agreed to check what the specialty had been at Kilnhurst and to feed back to HSC but there was definitely still a specialist unit at Swinton.  Early Years received a good deal of support and instead of creating a specialist nursery the Early Education Grant was used to provide bespoke support for a child.  This had led to positive outcomes and within the last 12 months a playgroup dedicated to very young children with signs of neurodevelopmental difference had been started.

 

The Chair thanked the officers for their very informative presentation and also thanked colleagues from Speak Up for sharing their experiences.

 

Discussion ensued on future scrutiny of Autism and CAMHS and whether these would be looked at separately or together but as the Autism Strategy was all-age, and to reflect neurodiversity as being distinct from mental health, it was agreed that these should be looked at separately. 

 

Resolved:-

 

1)     To note the information provided on progress with the strategy.

 

2)     That the final draft of the strategy to be shared with the Select Commission.

 

3)     That a further update on implementation of the strategy be provided in  2020-21.

 

4)     That the results of the on-line diagnosis pilot with Healios be reported back to the Select Commission.

 

5)     That discussion takes place to scope and schedule future scrutiny of the Autism Strategy and CAMHS as separate pieces of work.