Shaping Autism Services in Southern Staffordshire

The current contract for Autism Spectrum Condition (ASC) services in southern Staffordshire is due to come to an end. In order to comply with the law around NHS contracts, the CCGs in the area must award a new contract to provide the service and invite potential providers to apply.

The CCGs in Cannock Chase, East Staffordshire, South East Staffordshire and Seisdon Peninsula and Stafford and Surrounds engaged with the public to shape the future service. This was ensure that with the new contract patients and their families receive the right, high quality services that they need and to learn from your experience of the current services.

The feedback on what is important to you and what support would help you and your child to live well with autism is key and will make a difference to the future service in southern Staffordshire. The online survey was available to the public up until Sunday 30 June and we also held a series of listening events to hear from users of existing services, including engagement events in Rugeley, Stafford, Perton, Tamworth, Burton and Uttoxeter.

The feedback from these events and the online survey is currently being collated and documented in order to build a picture of what the future services should look like for those patients who access the Autism Spectrum Condition (ASC) services in southern Staffordshire. A summary of the findings can be found pdf here (861 KB)


By evaluating the results of participation through public and patient involvement, the CCG can learn lessons for the future and continuously improve performance. In the table below you can review this project to understand more about what patients said, and what we did as a result of that feedback. 

Purpose of engagement

Clinical Commissioning Groups

Period of engagement

Methods of engagement

Stakeholders engaged

To explore the experience of children and young people, as well as their parents and/or carers, of the Autism Spectrum Condition Service in southern Staffordshire.

To identify what is working well and suggested improvements for a new service specification as part of the procurement process.

The engagement was led by the four Clinical Commissioning Groups in southern Staffordshire - Stafford and Surrounds CCG, Cannock Chase CCG, South East Staffordshire and Seisdon Peninsula CCG and East Staffordshire CCG.

The engagement was undertaken between Wednesday 15 May 2019 and Wednesday 31 July 2019.

The CCGs engaged with parents, carers and families about the appropriate method of engagement to use. It was agreed to use a combination of a survey (both digital and printed) social media including Facebook and Twitter, and face-to-face engagement events with parents and carers and children and young people with autism.

A total of 10 face to face engagement sessions were held across the four CCG areas.

· Children and young people with autism

· Parents, carers and families of service users

· Autism support groups

· GP membership

· Healthwatch Staffordshire

· Local providers

· NHS England

 

You said…

We were able to…

We considered but…

We couldn’t because…

Most respondents (91%) said it was very important to receive confirmation of a referral being received by the service provider and 66% said they thought that up to three weeks was an appropriate timescale to wait

The provider shall acknowledge receipt of the referral within 10 calendar days.

   

Most respondents (97%) thought up to 12 weeks was a reasonable timeframe to be seen by a future service once a referral has been accepted.

The provider shall offer a first appointment to initiate the assessment process within 12 weeks of the referral being accepted.

   

In rating the different components of the assessment process, the areas that people felt were most important were:

· waiting times for the assessment process to start

· timeliness of appointments

· being kept informed about the progress being made

· being seen by the same professional

· information about additional support available and how to access it

The provider shall deliver an assessment & diagnostic service for ASC to any child suspected as having autism within the qualifying area. The service will be fully compliant with NICE guidelines and related guidance.

The provider will have diagnosticians that understand autistic female characteristics.

The provider shall provide advice and guidance to all potential referrers regarding eligibility for the assessment and diagnostic process including written advice to referrers.

For all children/young people accepted for assessment, the provider shall appoint a Key worker to lead on the completion of the assessment

   

Just over half of respondents (58%) said they would not have concerns about a trainee being involved in their care as part of future service

A further 30% said they would have no concerns as long as trainees are fully supervised, competent, trained and a second opinion is available

CYP with autism will have a designated professional suitably qualified key worker from the service to oversee and coordinate their care and support requirements.

The service will provide relevant Continuing Professional Development (CPD), appropriate supervision to support risk management delivering best outcomes.

   

In rating the different factors of a first appointment with the service, the areas that people felt were most important were:

· having enough time to discuss concerns

· feeling listened to

· having clear and quality information

· access to second opinions

·  support offered to parents/carers

For all children/young people accepted for assessment, the provider shall appoint a Key worker to lead on the completion of the assessment

The Key worker shall lead in providing information to the family regarding the implications of the diagnosis and liaise with health, education and social care agencies

Written information shall be provided to the family regarding the outcome of the assessment, this report will be individualised and person centred and written in a way that they are easy to understand and jargon free; any technical terms in these assessments / care plans will be defined.

The provider shall discuss any concerns from the family/child/young person regarding the outcome of the diagnostic assessment including the appropriateness of obtaining a second opinion from another provider and information on the complaints process

   

In rating the environmental factors during an appointment, the areas that people felt were most important were:

· having a calm and quiet environment

· parking

· toys/equipment

· distance to travel

· options of home visits

·  child friendly decoration

Other environmental factors mentioned included:

· For appointments to not take place in a hospital or clinical setting (37%)

· Access to local services as travelling long distances can cause anxiety (21%)

· Assessments that are adapted to children (16%)

The Service shall provide a range of service outlets within the geographical area of South Staffordshire.

Ensure that the service is accessible and provided in an appropriate setting that creates a safe and secure physical environment. This will take into account issues such as stigma and sensory needs.

Ensure that services have age-appropriate physical settings

   

Most respondents (85%) would prefer to be informed about a diagnosis face to face however people (63%) also said it was important to have the diagnosis in writing so it could be shared with other agencies such as schools

If autism is diagnosed, this will be communicated to the parent/carer during a face to face meeting (unless explicitly otherwise requested by the parent/carer) by a professionally qualified, appropriate member of the autism service

The family will be provided with written information relating to the implications of receiving an autism diagnosis within 4 weeks.

Written information shall be provided to the family regarding the outcome of the assessment, this report will be individualised and person centred

The outcome of the assessment shall also be provided in a written form to all agencies involved in the health, education and social care of the child/young person and to the child/young person’s GP within 4 weeks of the assessment being completed

If autism is not diagnosed, the provider shall provide the outcome of the diagnosis face to face, they will also provide a written report with the assessment findings. The provider shall provide advice and guidance to the family regarding other services that might be able to assist with the child/young person’s condition.

   

(71%) respondents believe it is very important for patients to be assigned a key worker following diagnosis as part of future services.

CYP with autism will have a designated professional suitably qualified key worker from the service to oversee and coordinate their care and support requirements

   

When asked what support they would need from a key worker, the following support services are important to most respondents:

· Point of contact for crisis situations

· Open door access

· Liaison with other health/care/education professionals to ensure joined up care

· To explain your care plan

· Explanation about the condition

· A choice of communication channels

The role of the key worker will include ensuring that an individualised and person centred care plan is developed for the person covering all the care, support and adjustments they need. The designated professional will also help them gain access to the services; including education they need and support transitions between services.

   

Most respondents (80%) said they would prefer to access their key worker via email, 72% said they would like face to face access and 70% said they would prefer telephone access

The Service shall be available a minimum of 5 days per week, excluding public holidays, between 9 am-5pm. The provider will also offer availability during evenings and weekends as appropriate to need.

The service shall provide a single point of access for service users and referrers via telephone, and email from 9-5pm Monday-Friday as a minimum

   

(64%) respondents felt they needed additional support from Autism services whilst their child was in crisis.

The provider will have in place joint working protocols (agreed with and by the CGG) in relation to children with Autism and their families ‘in crisis’ and providers of emergency or out of hours care including adult services from the age of 16 when support or consultation be required urgently.

This will include the development of an agreed joint approach agreed by the CCG, that includes:

Regular (at least weekly) meeting between clinical leads from providers (via face to face / teleconference) to identify children ‘at risk’ and agreement of joint contingency plans.

The protocol will adhere to CCG guidance and practice in relation to CCG Care Treatment Review/Care Education Treatment Revew and Dynamic Risk Register Guidance and processes.

   

When asked where they took their child in the event of a crisis, most respondents (82%) said they took their child to the autism service

   

When asked why people had not taken their child for crisis support, 56% said there was limited support available and they were unable to access the services, and 50% said they didn’t know who to contact

   

For those who had children who had been in crisis care, most respondents (75%) said they had needed 1:1 psychological intervention and 70% said they needed a timely, urgent referral to professionals in other services

The service shall provide a single point of access for service users and referrers via telephone, and email from 9-5pm Monday-Friday as a minimum

 

 

The service will develop a risk management plan, if required, in collaboration with the child / young person and their parents / carers. When appropriate develop shared risk management plans in addition with key agencies involved in holding the risk, in particular the voluntary sector and social care.

The service shall provide a single point of access for service users and referrers via telephone, and email from 9-5pm Monday-Friday as a minimum

   

When asked what support they would need during a crisis, the following factors are important to most respondents:

· Referral process to clearly indicate a child in crisis

· Timely access to key worker

· Confirmed appointment with appropriately qualified professional

· Timely referral to professionals in other services

· 24 hour crisis phone line

We considered a 24 hour crisis phone line

We felt this is a separate service rather than one that could be included as a part of a community services

When asked which interventions would support children and young people to live well with autism, most respondents (83%) said support around social interactions, 80% said one to one psychological/ psychiatric support and 79% said sensory assessments

The provider shall deliver a range of evidence-based interventions to children/young people diagnosed with ASC in settings across South Staffordshire. These interventions shall include both individual and group interventions.

The settings for delivery will be determined by the needs of the child and can include educational provider settings.

Provide information at all stages of the pathway about interventions or treatment options to enable children, young people and parents / carers to make informed decisions about their care appropriate to their competence and capacity; this information needs to be clear, easy to understand and jargon free.

   

When asked what support would help to make the transition to adult services easier for young people and their families, the following factors were most important to most respondents:

· Current Key Worker to liaise with Key Worker from Adult Services

· Parent and child to ensure the care plan is up to date with the child’s aspirations and needs

· Multi Agency meeting to discuss further education/employment opportunities attended by both Key Workers’

The Provider shall provide services to all Children and young people from birth up to their 19th birthday (unless they have an EHCP in place in which case it will be up to their 25th birthday).

CYP with autism will have a designated professional suitably qualified key worker from the service to oversee and coordinate their care and support requirements

   

When asked how people would prefer to communicate with the service, 90% said by email, 80% said by telephone between 9am and 5pm and 78% said face to face between 9am and 5pm

The Service shall be available a minimum of 5 days per week, excluding public holidays, between 9 am-5pm. The provider will also offer availability during evenings and weekends as appropriate to need.

The service shall provide a single point of access for service users and referrers via telephone, and email from 9-5pm Monday-Friday as a minimum.

Additional hours shall be provided by the service should resource be available

   

 

If you think that we could have done better with this engagement activity, then please email your suggestions for improvements to This email address is being protected from spambots. You need JavaScript enabled to view it.

 

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