transforming care for people with autism in the … · 7 transforming care for people with autism...

TRANSFORMING CARE FORPEOPLE WITH AUTISM INTHE NORTH OF ENGLAND

LEARNING SO FAR SEPTEMBER 2016

1. Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .3

a. Transforming Care North West Autism Event . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .4

b. Transforming Care North East Autism Event . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .5

2. Sharing the learning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6

a. Previous event . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .6

i. Highlights from the December 2015 autism event . . . . . . . . . . . . . . . . . . . . . . . . . .6

ii. Update from December 2015 autism event (NE event) . . . . . . . . . . . . . . . . . . . . . . .7

b. The national picture for Autism Spectrum Conditions (ASC) . . . . . . . . . . . . . . . . . . . . . .8

i. Welcome and description of the national scene (NW event) . . . . . . . . . . . . . . . . . . .8

ii. Welcome scene setting (NE event) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .9

iii. What is autism – the professionals’ perspective (NE event) . . . . . . . . . . . . . . . . . . . .9

iv. Transforming care for people with autism (NE event) . . . . . . . . . . . . . . . . . . . . . . . .10

v. A spectrum of obstacles and SEN support (NE & NW events) . . . . . . . . . . . . . . . . . .11

vi. Autism self-assessment framework – sharing ideas (NE event) . . . . . . . . . . . . . . . . .13

c. The current situation for ASC services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14

i. Autism, a personal perspective (NW event) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .14

ii. The Barnsley model for people with autism and no learning disability (NW event) . .16

iii. The Trafford extended service and Trafford autism services (NW event) . . . . . . . . . .17

iv. Obstacles and solutions ‘Our work in progress’ – low level preventative support (NW event) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .18

v. People’s stories: what happens when things go right? (NE event) . . . . . . . . . . . . . . .19

vi. People’s stories: what happens when things go wrong? (NE event) . . . . . . . . . . . . .19

vii. People’s stories: diagnosis later in life? (NE event) . . . . . . . . . . . . . . . . . . . . . . . . . .20

viii. A carer’s story . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .20

ix. STOMP case study: Jack’s story, a family perspective on over-medication in autism . .20

x. Virtual autism network . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .21

d. Next steps for improving ASC services . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .22

i. North West workshops . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .22

1. Lancashire workshop . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .22

2. Cheshire and Mersey workshop . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .27

3. Greater Manchester workshop . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .30

ii. North East groupwork . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .32

Contents

Transforming care for people with autism in the North of England2

This ebook captures the highlights and materials from two autism-focused events held inthe North of England in September 2016 as well as looking back at a previous event heldin December 2015.

With thanks to David Gill, NHS England for his illustrations of the NW event and DianeStevens, Tees, Esk and Wear NHS Foundation Trust for her report on the NE event.

1. Introduction


Transforming Care North West Autism Event

Thursday 22nd September 2016, Salmesbury Hotel, Preston

Over 140 people attended this meeting from a wide range of backgrounds, includingcommissioners, social workers, psychiatrists, nurses, psychologists, allied health professionals,providers, charities, advocates, families, people with autism and local authority and healthstaff from the three North West Transforming Care Partnerships (TCPs) (Cheshire &Merseyside, Greater Manchester and Lancashire). Despite the wide range of professionalbackgrounds and areas of interest, all the participants were united in a common goal toimprove services for people with autism.

The agenda for the event aimed to give an overview of the national picture and currentnational guidance, examine the current situation for autism services in the North West(including introducing examples of good practice from across the North region) and thendiscuss how the gaps in provision might be filled in each TCP area. Presentations werefollowed by TCP specific workshops in the afternoon designed to progress the autism agendain the three local areas.

‘It is so refreshing toget together withpartner organisationsin the North West tofocus on people andservices for peoplewith autism spectrumdisorders and not alearning disability.There is so muchscope fordevelopment andimprovement.’Delegate at the NWautism event

The agenda from the day can be accessed here:www.slideshare.net/NHSEngland/01-autism-nw-agenda


Transforming Care North East Autism Event

Friday 30th September 2016, Discovery Museum, Newcastle

The autism event in the NE was organised by the autism sub-group which is part of the‘Community Model of Care Task and Finish group’ in Cumbria and the North EastTransforming Care Partnership (TCP) and reports directly to the TCP Board.

The autism sub-group is made up of representatives from local authority, NHS andparent/carer groups as well as representation from Cumbria and the North East regionally andit has agreed a collective wish to improve quality of life for people with autism.

To raise the profile of autism as part of Transforming Care, the autism sub-group arranged thiscollaborative event to:

• enable better understanding of the complexities in supporting people with autism• create greater awareness of support and treatment services available for people with autism in the North East • lead the way in raising the profile of autism within the Cumbria and the North East Transforming Care Programme

The presentations were delivered by people who have autism, professionals working withpeople with autism and NHS England.

The event was attended by a variety of professionals, from health, voluntary sector, localauthority, clinical commissioning and service users from the North East and Cumbria andNorth Yorkshire.

People were given the opportunity to have stalls at the conference which promotednetworking.

The agenda from the day can be accessed here:http://www.slideshare.net/NHSEngland/02-ne-autism-event-programme


2. Sharing the learningLearning from previous events

Highlights from December 2015 Autism EventThe first regional autism event was held on 11th December 2015 in Newcastle and was wellattended.

The following are the key headlines from the event:

• 90+ people attended the day, with 12 out of 13 local authority areas were represented, plus people with autism, family members and health and social care professionals• Some new housing and support models are being developed• Some examples of collaborative work between local authority and NHS involving autistic people• Collaboration and joint working still needs improvement• Training is important, but don't rely on e-learning and make sure training is co-produced with people with autism• The effectiveness and impact of autism training needs to be reviewed• Support is needed in the community for people who don't have learning disabilities• There is a lack of peer support, autism advocacy and other low level support (such as talking therapies) which maintain good mental health and reduce social isolation• We need to ensure joint working across services• Co-production is needed in all areas with autistic people and families• People with autism need support to get a new job• There are social enterprises out there doing low level preventative stuff, so how do we link with them?

The agenda for this event can be found here:www.slideshare.net/NHSEngland/03-north-east-autism-event-agenda-dec-15

A summary of the day can be found here:www.slideshare.net/NHSEngland/04-summary-and-next-steps-final-dec-15


Update from December 2015 Regional Autism EventPam Lawrence MBE, Managing Director, Spectrum Enterprises CIC(Presented at NE autism event)

Pam Lawrence presented an update on progress since the initial meeting in 2015. Pamidentified the burning issues that had come out of the previous event as follows:

• The lack of peer support, autism advocacy and other low level support (such as talking therapies) which maintain good mental health and reduce social isolation.• Ensuring joint working across services• Co-production with autistic people and families• Support to get a job• Need to review the impact and effectiveness of autism training

The full presentation can be accessed here:www.slideshare.net/NHSEngland/05-update-from-dec-2015-regional-evet


Welcome and description of the national scene

David Gill, Autism Advisor, NHS England and Sarah Jackson, Strategic Case Manager,NHS England(Presented at NW autism event)

A growing population of people with autism spectrum conditions (ASC) means that it is vitalto get services right, not just to ensure the best possible outcomes for people using ASCservices now, but also to prepare the system for future levels of demand.

David and Sarah’s presentationexplains the national model andprogramme of work.

The key learning from thispresentation was:

Building the right support is allabout reducing unnecessary relianceon inpatient provision for peoplewith learning disabilities and/orautism (this includes people withautism and Asperger’s without adiagnosed learning disability), andimproving quality of life and qualityof care. To do this we need:

• to know our population of people with learning disabilities and/or autism,• understand the support/services we currently have available • and create innovative new ways of working based on person-centred need.

For further information, contact [email protected]

2020 2025 2030

43,178 42,949 42,657Number of people in the NW ofEngland aged 18–64 predicted to haveautistic spectrum conditions.

Source: www.pansi.org.uk version 8.0

The national picture for autism spectrumconditions

The presentation can be accessed here:www.slideshare.net/NHSEngland/06-nw-introduction


Welcome and scene setting

Lesley Jeavons, Head of Adult Care, Durham County Council(Presented at NE autism event)

In her presentation at the NE event, Lesley outlined the following:

• the objectives for the event• the vision for autism services in Cumbria and the North East• how work on autism will be taken forward• the aims of the Transformation Programme• key achievements so far for the Transformation programme and the autism subgroup• next steps for the programme.

What is autism? The professionals’ perspective

Dr Helen Pearce, Consultant Psychiatrist, Tees, Esk and Wear Valleys NHS FoundationTrust(Presented at NE autism event)

• Autism is a complex condition – ‘when you’ve met one person with autism, you’ve met one person with autism’. • A person can be ‘high functioning’ but have moderate to severe autism; difficulty with social interactions, multiple sensory issues, delayed processing, and impaired ability to communicate effectively. • A person can be considered low functioning; poor verbal skills, limited academic skills, and minimal personal care skills but only have mild autism; more flexibility, calmer emotionally, less sensory sensitivities, and more socially connected. • There may also be other co-existing difficulties e.g. obsessive compulsive disorder and eating disorders. The individuals’ needs are different. • Responsive services which can be accessed early to avoid crisis. The right care at the right time in the right location; inpatient care must be available, only for as long as it is needed.

The presentation can be accessed here:www.slideshare.net/NHSEngland/07-ne-introduction

The presentation can be accessed here:www.slideshare.net/NHSEngland/08-what-is-autism


Transforming care for people with autism

Diane Domenico, Personalisation Lead, NHS England(Presented at NE autism event)

Diane gave an overview of the national Transforming Care programme, explaining the newService Model and the 9 principles behind it. She also outlined the priorities for the nationalteam over the next few months.

The presentation can be accessed here:www.slideshare.net/NHSEngland/09-transforming-care-for-people-with-autism


The Commission’s report on the findings of their enquiry makes six recommendations forimproving the healthcare received by people with ASC.

A spectrum of obstacles and SEN support

The national perspective/Westminster Commission on Autism– Six recommendations to improve access to healthcare

Emily Christou, National Strategy Coordinator, Westminster Commission on Autism,National Children’s Group(presented at NW autism event)

Carole Rutherford, Director, Autism in Mind(presented at NE autism event)

At the NW event Emily’s presentation introduced the Westminster Commission on Autism andits enquiry into access to physical healthcare for people with Autism.

Although there is no available data for England, studies from other countries show thatpeople with Autism Spectrum Conditions (ASC) have a significantly lower life-expectancy thanpeople without autism.

A survey run by the Commission showed that autistic individuals, families and professionalsbelieved access to healthcare is an issue for people with ASC.

74% (n=497)

of all survey respondents felt that autistic people receive a ‘worse’ or ‘much worse’ health service than their non-autistic counterparts.

88(n=597)

of all survey respondents told us that they feel health professionals do not understand the conditions which co-occur alongside autism.

Research is needed to establish the confidence of healthcare professionals in managing autistic patients with co-occurring conditions.

Emily’s presentation can be accessed here:www.slideshare.net/NHSEngland/10-a-spectrum-of-obstacles-and-sen-support


At the North East event, Carole’s presentation also explained how autistic people haveincreased health risks and reduced life expectancy yet face multiple obstacles to accessing thesame healthcare that other population groups enjoy. In addition, autistic people can struggleto complete tasks and can forget to do essential health-related tasks. Low level support andautism advocacy helps individuals to maintain good mental health.

Additional resources:

The Westminster Commission’s report on access to physical healthcare can be found here:

Emily recommended the Royal College of GP’s work on cascade training which can beaccessed at the following link:

Carole’s presentation can be accessed here:www.slideshare.net/NHSEngland/11-a-spectrum-of-obstacles-carole-rutherford

www.rcgp.org.uk/clinical-and-research/clinical-resources/autistic-spectrum-disorder.aspx

https://westminsterautismcommission.files.wordpress.com/2016/03/ar1011_ncg-autism-report-july-2016.pdf


Autism self-assessment framework – sharing ideas

Michael Swaffield, National Policy Lead for Autism, Department of Health(Presented at NE autism event)

In his presentation on the “Self- Assessment framework”, Michael Swaffield explained thatthe purpose of the self-assessment framework is to:

• Enable local areas to review their progress and support future planning with partners including people with autism and their families. • Identify progress made in the implementation of the autism strategy across England.

Michael stressed the value of completing the self-assessment framework in a timely andaccurate manner and also advised the audience of the offer to hold quarterly conferences.

The presentation can be accessed here:www.slideshare.net/NHSEngland/12-autism-self-assesssment-framework


The current situation for ASC services (including hightlighting good practice)

Autism – a personal perspective

David Gill, Autism Advisor, NHS England(Presented at NW autism event)

David’s presentation about his experience of living with autism described his journey fromdiagnosis at 8 years old to adulthood and achieving paid employment as a Peer SupportWorker and Learning Disability Advisor to NHS England.

The key learning from David’s presentation was:

• Every person with autism is different, and what works for one individual may not work for another• Times of change and transitions are difficult for me, but I have found that if I persevere, it always works out good in the end (football, holidays, college)• I am where I am now because of the support of my parents, friends, girlfriend and work colleagues

David’s presentation can be accessed here:www.slideshare.net/NHSEngland/13-autism-a-personal-perspective

@2012–2013 Little Star Center, Inc. All rights reserved.


‘The thing I enjoyedmost about the eventwas listening to thepowerful story ofDavid Gill.’Delegate at the NWautism event


The Barnsley community model for people with autism and nolearning disability

Marios Adamou, Consultant Psychiatrist and Clinical Lead(presented at the NW autism event)

Marios’ presentation described the process which led to the development of Barnsley’s ADHDand autism service.

The key learning from Marios’ presentation was:

• There needs to be parity of investment between Autism and other Mental Health Pathways• People with Autism do not only need a ‘label’ provided by a diagnosis - they need multiagency and multidisciplinary specialist interventions• There is more to do in developing specialist Autism Teams nationwide.

Mario’s presentation can be accessed here:www.slideshare.net/NHSEngland/14-barnsley-autism-model


The Trafford Extended Service (TES) and Trafford AutismServices

Anna Dodd, TESGeraldine Thompson, TESJane Forrest, Autism Trafford(presented at the NW autism event)

MIn this presentation, the team from Trafford explained how they are addressing the nationalautism strategy through the Trafford Extended Service. They explained the details of howpeople are assessed by the service and what post-diagnostic support is in place to help them.

The Trafford presentation can be accessed here:www.slideshare.net/NHSEngland/15-trafford-extended-service


Obstacles and solutions ‘our work in progress’ – low levelpreventative support

Carole Rutherford, Aim 1 Voice(presented at the NW autism event)

Carole’s presentation talked about the fact that prevention and early intervention cost lessthan crisis management support in the longer term and that with appropriate support, manyadults with autism can live independently in the community.

The presentation described the services which are provided by AIM – a solutions focusedservice working with individuals and their families to enable them to live as independently aspossible.

Carole’s presentation on AIM can be accessed here:www.slideshare.net/NHSEngland/16-obstacles-and-solutions


People’s stories: What happens when things go right?

Mark FostonLesley Anne Chaytor(presented at the NE autism event)

In this presentation, we heard the story of an individual who had been living in hospital formany years, who was very institutionalised and whose needs were not met by traditionalmodels of community care. The presentation described the implementation of a bespokepackage of care and the steps which led to this individual’s discharge and eventual settling inthe community to a point where he now feels safe and does not want to return to hospital.

This highlighted the importance of transition planning and, in particular, a betterunderstanding of legal processes in relation to discharge into the community.

People’s stories: What happens when things go wrong?

Kimberly SmithCarol Rutherford(presented at the NE autism event)

This presentation told the story of someone living with Autism and the impact whenprofessionals do not understand how you communicate. The importance of communicationand the effect on emotional wellbeing. The ability of the person to communicate withprofessionals/impact on life if can’t communicate my needs are not met, can lead to mentalhealth issues in later life and greater risk of hospital admission. The problems withunderstanding someone with autism communication can impact on professionals’ opinionsresulting in a someone’s behaviour being seen as detrimental to family members whenactually all they are trying to do is understand what their family member needs. Havingsomeone to turn to can mean the difference between someone coping or hitting crisis point,the value of advocacy.

The presentation can be accessed here:www.slideshare.net/NHSEngland/17-what-happens-when-things-go-right

The presentation can be accessed here:www.slideshare.net/NHSEngland/18-what-happens-when-things-go-wrong


People’s stories: Diagnosis later in life

Stuart Ferrol(presented at the NE autism event)

Unfortunately, this presentation is not available.

People’s stories: A carer’s story

Ged Walton(presented at the NE autism event)

Unfortunately, this presentation is not available.

STOMP case study: Jack’s story, a family perspective onover-medication in autism.

Eleven-year-old Jack has pathological demand avoidance syndrome and attention deficithyperactivity disorder (ADHD). His mum, Julie, talks about the impact that over-medicationhad on her son and how he’s better off without the cocktail of drugs.

This case study has been produced to highlight the issues of overmedication being tackled byNHS England’s STOMP (stopping over-medication of people with LD) project.

Further information on STOMP can be found atwww.england.nhs.uk/wp-content/uploads/2016/06/stopping-over-medication.pdfand on the Transforming Care MOOC which is a on online training course aimed at healthand care staff involved in delivering Transforming care.

For information on how to access the MOOC click here:www.slideshare.net/NHSEngland/23-mooc-flyer

Easy read information is here:www.england.nhs.uk/wp-content/uploads/2015/07/ld-med-advice-easy-read.pdf

The full case study can be accessed here:www.slideshare.net/NHSEngland/21-jack-ld-case-study


Virtual Autism Network

A national online network for Learning Disabilities was launched on 28th October 2016. Thisprovides a virtual space for discussion and sharing information between TCPs. The networkincludes a sub-group for anyone wishing to share autism-specific information or discussautism-related topics.

Follow the link below to request access to join the online network. You will be able to accessthe site once an administrator has approved your request.

For further information on joining the Yammer network, a user guide can be found here:


www.yammer.com/improvementld/#/

www.slideshare.net/NHSEngland/22-access-the-yammer-network-for-ld

Next steps for improving ASC services

North West workshopsWorkshops were held for each of the three TCP areas at the NW Autism event. The questionsaddressed by these workshops were as follows:

1. What current [autism] service provision is in place in your TCP for children, transition, adults?2. What is missing from the guidance we have heard at the event today?3. What ideas do you have for addressing the gaps we have identified?

Lancashire workshop:

This workshop began by listing all the autism services currently in place in East Lancashire asfollows:

Lancashire autism partnership Board links with voluntary organisations.

Core provision:

• NHS Community LD and Autism teams – (not autism specific but some autism/Asperger’s specialists and Blackpool run some social skill groups)• Lancashire County Council Transition team (not autism specific)• Forensic service (not autism specific)• Lancashire County Council LD and autism social work team (not autism specific)• Lancashire County Council Employment Service (not autism specific) • LD and Autism transitions social work team• CAMHS (transformation plan changing to age 18)• Direct payments• Cumbria 2–11 year’s early prevention for challenging behaviour

Education:

• Blackpool SEN School (allocated teachers with autism focus)

Diagnosis:

• Adult diagnosis via Action for ASD• Via GP in Central/North in East Lancs via a private contractor BTSS Vicky Bliss• Self-referral for diagnosis• Children’s diagnosis only available in CAMHS• SEND EHC plans


Support services:

• Supported living services (not autism specific but some bespoke training available)• Respite services (not autism specific)• Action for ASD: CCG one year commission for post-diagnostic support for children in E. Lancs & Blackburn with Darwen (counselling, solution focused therapy, low level intervention and support, transition for 16–25 year olds)• Sensory input via funding from CCG • National Autistic Society, • Outrageous ambition• Autism initiatives • Ideas Lancashire/Preston peer support – Preston Autism resource centre• Social groups Vicky Bliss (private)• North Lancs Piccadilly garden – day service, develop work and social skills, social skills, maintenance team, cooking classes – this is expanding its day services to older people• Learning together Northwest • REACT – advocacy for people with LD and Autism – employ people LD and Autism, drop in shaping the future

Networks:

• Lancashire Constabulary Autism Network with training across the criminal justice system.

Tools and guidance:

• Autism PB website with guidance and tools• Passports

The conclusion of this session was that there are large gaps in services, so what can we do tolook at what we already have and make sure it functions in an integrated more streamlinedway.


The second section of the Lancashire workshop focused on what was missing from currentservices in Lancashire compared with the guidance heard at the event. Attendees at theworkshop identified many gaps in provision in their area as follows:

Planning, communication and administration:

• No register recording all people with autism to inform planning of current and future services. • Need a single message across the whole system• System for coordinating all services across the system• Need to stop people from being passed from service to service. • Coordinated communication with the media. • Realignment of resources to be able to deliver specialist teams• Evidence base is not clear for support for young people with autism and their parents• How many of our current long stays inpatient population have undiagnosed Autism? Is it something we are aware of? Can explain much of the behaviour and strategies used to support them.• Roll out passports for everyone• Care navigation across the whole system

Workforce development:

• Large gaps in training and development for a range of professionals/providers. • Training in referral pathways• Training and education for parents and carers. • Respite services – training to identify Autistic traits from early age• Education on Autism needs to be clear and not portrayed in a negative way

Education:

• Special school integration• Link into the education system as education could provide support

Diagnosis:

• Lack of formal, robust and consistent diagnostic pathway (but some routes in if person had LD or MH). • Takes too long for children to be diagnosed

Funding:

• Access to funding for people without LD/MC (although possible route via CCG/CSU).

Core services:

• No publicly funded service which offers MDT input• Autism flagging system in GP records• Autism flagging system in local authority records


• LD teams in health only deal with LD and Autism (strict commission will not see anyone with IQ over 70) (not an issue in social work as there is now no IQ limit). • Mental health teams will not deal with people with autism and mental illness. • Gap in age ranges covered, under 5’s and 16–18 seem to jump out, older people who’ve not been picked up

Support services:

• Pockets of support rather than a whole spectrum service • Child, education and family support from referral onwards• Focus on identifying potential and work to strengths• A one-stop shop for information, advice and signposting• Respite services for people with autism and no learning disability

Mainstream services/community:

• Lack of equity in terms of reasonable adjustments • Lack of employment opportunities• Lack of social support• Community awareness• Police knowledge of Autism – to have capacity so they are supported to communicate• Housing – Autistic people often suffer social abuse which can lead to further isolation

Next, workshop attendees were asked to think about ideas on how the region could begin toaddress the gaps they had identified. It was agreed that co-production needs to be at thecentre of the work on autism services in Lancashire. This means increasing involvement frompeople with lived experience and introducing a mechanism to share skills and knowledgeamongst people with lived experience to improve the sustainability of the coproduction process.

With coproduction as a given, several themes emerged as to how Lancashire should proceed:

1. Improve integration and decision making

• Increasing support from 3rd sector organisations/sharing good practice/sharing resources and models • Linking up stat/no stat organisations to share resources and to avoid duplications

2. Training and Education

• Training at all levels from CFOs to direct care staff/Police/CJS• Develop specialist skills to cross services • Specific Asperger’s training for social workers and other professionals and how to put it into practice (not just autism awareness – not practical help)• Further education providers are required to offer supported internships for people with Autism but few do• Training – specialist social work assessments require specialist social workers to undertake assessment


3. Understanding/developing the evidence base/data

• Time/Support from CCG’s/DH/ADASS to enable benchmarking of other services to understand how these developed/evolved• Increase opportunities to record information/develop pathways from children – adults to increase evidence base for future developments• Honesty when completing stat recordings

4. Develop pathways and services

• Prevention services (consistent and equitable across Lancashire)• Post diagnostic support• Clarify pathways • MH provision• Improve transition• Diagnostic service (consistent and equitable across Lancashire)• Respite service

5. Support for parents

6. Housing

• To meet the sensory needs of people with autism


‘

Cheshire and Mersey workshop:

The overriding message from Cheshire and Mersey was that they felt that diagnostic servicesfor autism are currently in place but that post-diagnostic services need a lot more work.

In terms of the questions asked in the workshop, firstly, the following current services werelisted:

Children’s services Transition services Adult services

CAHMS (CWP, Sefton,Knowsley)

Aiming HighKnowsley) Asperger’s team diagnosis &post diagnostics (Liverpool)

Tier 4 inpatients services(CWP)post diagnostics(Liverpool)

Transition steering group(Knowsley)

Partnership working – ITequipment developing threeautism hubs

Diagnosis pathway – anyonecan refer in Liverpool

Transition pathway Drop in (Liverpool)

Children’s ward Activate Using Disco & Ados(Liverpool)

Tier 4 (Liverpool) Diagnosis pathway CWP

Autism School – PottersHouse, Rowan High, AbbottsLea, Autism initiatives – justlost service for out of schoolsupport, New Lands Hey,Wargrave School

Mersey Care Networkemployment

Sefton carers centre Access Sefton

Focus support (Liverpool) Imagine

Mya – Autism group Recovery College

SIGMA – Sefton Asperger’s Passport(Liverpool)

Parenting 2000 (Sefton) Autism together

Aiming High youth clubs –Plaza, specialist nights

NAS

FACT, Plaza (cinema) Plan B

Supported internship

Community connectors


Next, the gaps in current services in Cheshireand Mersey were identified as follows:

Gaps in governance/administration/assessment:

• ASC SAF not signed off by self-advocates – not same accountability as LD SAF• We currently don’t look at SAFs across Cheshire and Mersey and plan strategically• Disparity of services across Cheshire and Mersey• Social care assessments not consistently applied across Cheshire and Mersey• Integration and communication between services• Quality assurance of services

Gaps in training and education:

• Training • Knowledge gap with Mental Health Service – CTR

Gaps in pathways and services:

• Waiting time for diagnostic service• Funding for diagnostic service• Post-diagnostic services• Autism-specific transition services• Children’s pathway• Children’s centres • Prevention• Information on children’s post diagnostic services/voluntary sector/social supports

Gaps in employment support:

• If adults fail at work – nightmare with DWP to get benefits sorted


Lastly, the Cheshire and Mersey group discussed what the next steps should be.Unfortunately, there was little time remaining for this step, but the group did come up withthe following few ideas:

1. Understand current services

• Mapping of services for transition• Create joined up directory of services• Understand social worker assessment

2. Improve transition services

• Children on the children’s waiting list should not go back to the bottom of the adult waiting list.

3. Seek feedback from Mersey Care Board on patient services

4. Investigate how useful triangle of care toolkit would be


Greater Manchester workshop:

Key messages:

• How do we build in resilience and training in GM?• We need to build in more ‘stuff’ that isn’t about services (like Facebook etc).

Question 1: What current [autism] service provision is in place in your TCP forchildren, transition, adults?

Different localities in GM have access to different services. Services discussed were as follows:

The group discussed the fact that across the TCP we are beginning to recognise autism betterin children and young people, however, the following gaps in current provision wereidentified:

• There is not currently enough training in autism (including in the acute setting and paramedics).• We need to understand our workforce better• Community services are not able to deal effectively with people with a forensic history• High staff turnover means a lack of consistency in terms of supporting people with autism. • No clarity about the inclusion of autism in the transformation agenda.• There can be a gap after school/college leading to crisis (lack of meaningful occupation, social isolation).

Locality Services

Bury, Rochdale and Oldham Diagnostics

Tameside GED, SCAIT (children)

TES – Manchester Diagnostic only

Trafford Diagnostic and post-diagnosis

Stockport Good children’s diagnostic for ADHD/autism

Wigan New pathway:Adult diagnostic and post-diagnostic low level supportCommon set of standards – residential placeIAPT (although not always geared up for autism)Peer support


Question 2: What is missing from theguidance we have heard at the eventtoday?

The group believed the following was missingfrom guidance received at the event:

• Guidance on how to deal with the difference between what you want and what you can afford. • Compliance with accessible information standards• Consistency • Kitemark• Resilience training for families• ‘Person-centredness’• Building common sense and awareness• Partnership working

Question 3: What ideas do you have for addressing the gaps we have identified?

The group discussed the following in relation to next steps in addressing the gaps:

• The TCP needs to agree its priorities.• A variety of services are required if we are to meet individual needs. • Training for families: • Helping children to understand their condition • Resilience training for parents and carers

• Ensure access to diagnostic services across the patch• Implement post-diagnostic support for adults across the patch• Ensure equity across GM


North East groupworkDelegates at the NE event undertook group work to answer the following questions:

1. Where are we now?2. What do we want to do differently?

The key messages from the group work were as follows:

• Work to develop services for autistic people must include autistic people• Local authority and health services need to work together• Workforce development – there is variation in training provision for health, education and social care professionals across the region. There are calls for standardisation in training to ensure competent workforce. Online training is not enough. • Diagnostic services are stretched and often have long waiting times • There is a variation in post diagnostic support both from health and voluntary perspective• People have had trouble in accessing services both diagnostic and post diagnostic services• The commissioning of preventative services is inconsistent and without preventative service provision people with autism may end up in receipt of mental health services• There are implications for potential employment opportunities for people with autism• There is concern around how Education Health and Care Plans are completed• Hospital admissions are too long and not all professionals understand the impact of autism on someone’s communication and presentation• There is a lack of independent support living accommodation for people with autism and the support networks to assist people to understand the systems • Self-Assessment Framework is a great opportunity• Successes depend on local arrangements and result in a variation of services (post code lottery) • We need to support more people with autism to use personalised budgets.• Training was a topic that was mentioned continuously throughout the event. There are significant concerns regarding how the quality of autism training is measured, who measures it and who develops the training. Additionally, there needs to be more emphasis on what defies specialisms and who needs to access specialist training.• There needs to be an understanding of how to achieve the recommendations set out in ‘A Spectrum of Obstacles’.


transforming care for people with autism in the … · 7 transforming care for people with autism...

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