Historical Freedom of Information response From: NHS Staffordshire Commissioning Support Services Date: Tue, 17 Jul 2012 13:14:06 +0100 Subject: FOI Request Response Your Case Reference: FOI-2012-00225 - Staffordshire Cluster CRM:00062873 Dear Sarah McCulloch, Thank you for your Freedom of Information request dated 22/06/2012. Please see below the information you requested and our response(s) highlighted in blue: 1. How many adults you have with a diagnosis of autistic spectrum disorder (any, although if there are separate statistics for Asperger's, HFA, LFA, they would be appreciated) in your area; Stoke on Trent CCG Prevalence Data It is estimated that autism affects 1 in every 100 adults. The estimated numbers have been worked out from the population of the UK as given in the 2011 census 58,789,194 of whom 13,354,297 were under 18. Literature on the provision of services for people with autism repeatedly states that statutory organisations do not collect data on many people they are providing for or how many live in the catchment area. Estimates of the proportion of people with autism who have a learning disability ( IQ less than 70) vary considerably and it is not possible to give an accurate figure. It is likely that over 70% of those with autism have an IQ in the average to high range and a proportion of these will be very able intellectually. Prevalence in Staffordshire The Joint Strategic Needs Assessment in Stoke does not currently mention Autism however this needs to be addressed in future version. More work needs to be carried out through the data work stream with the plan to ensure transparency and accountability at a local level. Information about the numbers of adults in the area will enable better local service planning within health and social care. Prevalence in Stoke on Trent (PANS) Year 2010 2015 2025 No. of individuals 1491 1468 1465 Prevalence in Staffordshire (see attached document) 2. How many children; Stoke on Trent CCG "Indications from recent studies show that figures cannot be precisely estimated, but according to the National Autistic Society it appears that a prevalence rate of around 1 in 100 is a best estimate for children and young people under the age of 16. If applied to the population of Stoke-on-Trent, there are approximately 50,333 under 16’s (2005 census); therefore the estimated number of children and young people with ASD will be around 503. ASD affects males more than females and numbers appear to be rising." figures are for 0-18 years old unless otherwise indicated. • 164 school age children and young people known to SEND with ASD (are statemented by the LA) • 87 children and young people diagnosed by CAMHS ASD service 2011/12 with ASD . • 179 children/ young adults 0-18 year olds with a diagnosis of ASD on the Disability Register (held by Crossroads). Please note, some of these children and young people may show up in more than one service and there is scope for double counting. Staffordshire (see attachment) 3. What diagnostic services are available to a) adults and b) children; Stoke on Trent CCG CAMHS ASD , Education Psychology (SEND) and the Paediatric service are all assessment and diagnostic services for children and young people . North Staffordshire CCG a) adults – North Staffordshire Combined Health care Trust offer a limited diagnostic service that runs one day a month b) children - South Staffordshire have a diagnostic and post diagnostic service. North Staffordshire has a non Learning Disability team called the School Age ASD Team and the Learning Disability ASD work is part of the CAMHS Disability Service. Stafford and Surrounding CCG Please see question 1. South East Staffordshire and Seisdon CCG a) adults – need to contact the Learning Disability Service or council for an ‘assessment of needs’ This will then lead to a referral for diagnosis if need be. and b) children this is done via the GP writing the the community Paediatrician who will then start the ball rolling with the assessment process. Cannock Chase and East Staffordshire CCG's a) there is no defined diagnostic pathway for adults b) There is clearly defined diagnostic pathway available for children. This is delivered through a contract with Midlands Psychology. The commissioned service is in line with NICE guidelines Autism in Children and Adolescents CG128 which is published. 4. What agencies or teams you have that work with autistic people, provide support/services, strategise, etc. Stoke on Trent CCG • CAMHS ASD service provides a level of support as needed post-diagnosis, also runs an informal "coffee morning" for parents to encourage peer support. • Education psychology and SEND teams provide school based support. • Abbey Hill school ( specialism is communication and interaction including autism) offer an outreach service that offers training and support to mainstream school staff. From September, they will also offer support to individual pupils who have autism. • Children with disabilities Outreach team works with children and young people with ASD. • Children with disabilities Social Work team works with children and young people with ASD. • LLD youth provision across the City. • Weston Coyney Road residential short break provision (LA) • Dragon Square residential short break provision (mainly physical/health needs but some young people may have co-morbid ASD). • Crossroads Care Staffordshire offers a full range of respite services to support carers and the people they care for including palliative care services, domestic homecare services, an emergency service, one to one and group activities. • Aiming High for disabled children - short breaks programme- for children aged 0-19 years. This can be accessed by children and young people with ASD. North Staffordshire CCG Staffordshire County Council – Social Work Teams and Autism Outreach Team Stoke on Trent City Council – Social Work Teams Stafford and Surrounding CCG Please see attachment South East Staffordshire and Seisdon CCG Referrals to the Service All referrals are made through school SENCOs or Headteachers, with accompanying parental consent. Any other services wishing to make a referral are directed back to the pupil's school. Pre-school pupils are referred through District Early Years panels. On receipt of a referral an initial visit is made to the school in order to discuss the needs of individual pupils. Referrals are accepted as follows: Where pupils have a diagnosis of an ASD OR When a diagnostic agency has provided written confirmation that the pupil has been identified as having an ASD but, as yet, has not been given a formal diagnosis. Cannock Chase and East Staffordshire CCG's Given that there is not a specific statutory service catering for people with autism, we can expect that this client group will be present in a number of mainstream services: Caseloads of learning disability social workers Caseloads of mental health social workers People within services provided by specialist Mental Health and Learning Disability Provider Trusts Caseloads of Consultant Psychologists/Psychiatrists Attending learning disability day services Attending mental health day services Short break and respite services Living in independent sector residential and nursing homes Living in supported tenancy schemes Third sector provision 5. An email address/website for each of these agencies or teams where possible. Stoke on Trent CCG • CAMHS ASD service - 01782 408561/408373/408374 • Educational Psychology Service, SEND Service - tel no 01782 232428. • Crossroads: www.crossroadsstaffordshire.org.uk  01782 268391 who also run Aiming High Short Breaks programme : 01782 207863 North Staffordshire CCG www.staffordshire.gov.uk www.stoke.gov.uk/ccm/portal/ Stafford and Surrounding CCG Please see attachment South East Staffordshire and Seisdon CCG Contact Details The team covers the whole of the county and is based at The Flash Ley Centre, Hawksmoor Road, Stafford, ST17 9DR. Julie Birchall Manager of the ASD Team Tel: 01785 356977 Julia Anderson Head of Service - Education Psychology and Autism (Specialist Support Service) sss.service@staffordshire.gov.uk Cannock Chase and East Staffordshire CCG's www.staffordshire.gov.uk http://www.southstaffsandshropshealthcareft.nhs.uk http://www.midlandspsychology.co.uk   www.staffordshirecares.info   http://www.staffordshirecarespurplepages.info   6. What the typical process should be for an adult in your area first asking their GP for an assessment for autistic spectrum disorder to receiving a diagnosis/support. Stoke on Trent CCG We would expect the GP to refer the patient to the local specialist provider of Mental Health and Learning Disability services – North Staffordshire Combined Healthcare NHS Trust. If the patient has a recognised learning disability, then referral should be made directly to learning disability services. If not, then a referral should be made via the Single Point of Access system for mental health services. After referral, the route taken for diagnosis and support will vary dependent on the patients’ individual needs and circumstances. North Staffordshire CCG Individuals would be referred to the Learning Disability Clinical Psychologist at North Staffordshire Combined Healthcare who provides a limited diagnostic service within current resources Stafford and Surrounding CCG Please see attachment South East Staffordshire and Seisdon CCG Please see attached document Cannock Chase and East Staffordshire CCG's There is no commissioned service for diagnosis of autism in adults, GPs would manage the patient in the way they consider most clinically appropriate and this would depend upon the clinical presentation of the patient. For example it is likely that GPs would respond differently if the patient was exhibiting signs of clinical depression, compared with a patient seeking help for alcohol misuse that patient felt was secondary to an underlying possible autism spectrum disorder. We can confirm that the GP would be able to refer a patient to either primary or secondary mental health services as appropriate to the symptoms or problems the patient is experiencing. There is no pathway for the GP to follow in order to refer for assessment / definitive diagnosis / specialist autism specific interventions for adults not previously diagnosed as children.