Feedback report on the Adult autism and Attention deficit hyperactivity disorter assessment and diagnostic services Background NHS Scarborough and Ryedale Clinical Commissioning Group (SRCCG) undertook an engagement exercise to engage

with the local community and gather feedback on the adult autism and Attention deficit hyperactivity disorder

(ADHA) assessment and diagnostic service.

The service was commissioned by the NHS Partnership Commissioning Unit (PCU) in January 2016 following a

competitive tender on behalf of the four CCGs across North Yorkshire. The contract was for two years and was due

to expire on the 31st December 2017. CCGs across North Yorkshire agreed to continue the service with the current

provider and extend the contract for a further year.

When a contract is due to expire, it is an opportunity to review the current pathways and service specification to

ensure that the service meets the needs of the local population.

The current service assesses for adult autism and ADHA, but does not assess those with complex learning disabilities.

For adults with a learning disability and autism; if support is required it is provided through the Community Learning

Disability Team. Individuals with autism who have co-existing mental health conditions are referred to Mental

Health Services.

The aim of the engagement is to:

Work in partnership with adults with autism and ADHD and their families/carers and healthcare

professionals

o What works well?

o What could we improve

Increase awareness and understanding of autism among frontline professionals

Enable local partners to plan and develop appropriate services for adults with autism

Use findings to inform service reconfiguration

Methodology Vale of York CCG, are leading on the procurement of the service on behalf of all four CCGs in the locality. However,

to adequately engage with the target audience and gain feedback from across the whole of North Yorkshire, each

CCG undertook engagement in their own locality.

Open Meeting 4 July 2018 The engagement began with Vale of York hosting an open meeting held in York, 4 July 2018, specifically targeted at health care professionals. (Feedback detailed in main report)

Survey – GPs/healthcare professionals A survey was produced which was aimed at GPs and healthcare professionals, who refer into the service. Scarborough and Ryedale CCG distributed the survey to all GPs in its locality, as well as through the GP and stakeholder newsletter. (Feedback detailed in main report) Open Event – Harrogate – 21 August 2018 – 10.30am – 12:30pm This event was hosted by North Yorkshire County Council, which was open to all. (People with autism, ADHD, their families and carers as well as anyone who may be interested in the topic). The aim of the event was to talk to people about what a new autism and ADHD assessment service for adults could look like. To gain feedback on the current service and understand what was needed to improve the patient experience. (Feedback detailed in main report)

Local engagement: S&R CCG developed a survey as a method to gather feedback from patient/carers/service users in the local area. Dr Billingsley, lead GP for mental health services was interviewed by “That’s Yorkshire”, a you tube video was displayed on the S&RCCG website, explaining the reasons for the engagement and encouraging feedback to be shared. (https://youtu.be/R7EeNQL53Js)

Posted hard copy format of the survey to targeted key groups/networks including an easy read version

The survey was also available on line, the link was emailed to key groups/networks, including patient representatives and Loop members

A link to the electronic version of the survey was distributed widely through the CCG social medial channels and available on the website

Media release issued– raising the awareness of the survey and encouraging patients to share their feedback and attend the open meeting

CCG staff spoke face to face with patients at drop in sessions. (The Supported Employment Team

from North Yorkshire County Council were very supportive of this engagement exercise. They hold

monthly drop in sessions at Scarborough library/Norton Hive and welcomed staff from the CCG to be

part of this sessions. These sessions are available to people who require help and assistance in

gaining employment).

Please see Appendix 1 for the survey questions, Appendix 2 easy read version of survey.

Summary of feedback from the survey

A total of 21 responses were received. The highest volume of responders were from patients/carers with a

diagnosed/undiagnosed autism spectrum disorder (90%). 10% of responders were either an advocate for a patient

with ADHD or a patient with undiagnosed ADHD. (Please see Appendix 3 for full survey results)

Accessing the referral and diagnostic route

The feedback from face to face conversations, raised concern about the length of time patients were having

to wait for an appointment following the referral

The results of the survey show patients wait from 14 months to 2 years following referral to The Tuke Centre

64% of responders disagreed/strongly disagreed it was easy to gain access and be referred for diagnosis

Recognition of autism and the offer of earlier support from GPs and other health professionals

60% of responders reported no support was available from GP and/or other health professional whilst

waiting for an appointment at The Tuke Centre

Feedback from face to face conversations highlighted that some patients were not referred to The Tuke

Centre

Access to information and advice before screening and assessment

94% rated the information available to patients on autism spectrum disorder and ADHD as average/poor

14% of responders were receiving care from The Tuke Centre, 66% of responders were receiving support

through Yell SOS (a charitable organisation) and North Yorkshire County Council Support Employment

Teams.

82% rated the information available to patients on autism spectrum disorder and ADHD as poor

Support after diagnosis

Face to face feedback reported the need for more help to be available following diagnosis, ie: signpost to

support groups

70% rated their experience of service presently available as poor.

69% rated the support available following diagnosis as poor

Travel

Feedback from face to face discussions raised concern that because of the distance, patients were reliant on

parents family members taking them to York

Clients would like to see a service available locally to reduce the travel

Survey results showed 22% of responder agreed it was easy for them to access The Tuke Centre for

appointments

Demographics

The survey asked four demographics questions. The first related to which general practice surgery the respondent

was registered with and the first part of the postcode.

Results show: 14 responders were from Scarborough, 1 Vale of York (Pickering) and 1 Ryedale – (Derwent)

Feedback from face to face conversation:

“It would help if we

had a Tuke Centre

in Scarborough”

“What happens

after my

diagnosis?”

“Who can help me

when I am having a

bad day?”

“Yell SOS have been

really helpful to

me”

“NYCC Employment

Support Team are

marvellous help”

“The staff at Tuke

Centre were very

good”

“Following your final

appointment at The Tuke

Centre, can you signpost

us to support groups

rather than be left all

alone?”

“GPs to be more

aware of autism

and refer sooner”

Free text – a total of 15 comments were received:

Access to Information and support

“No information given about what help is available. Only staff at NYCC Supported Employment Team helped. My son ended up suffering from anxiety, depression not coping with the work the work environment. Sent to prison for 6 months, ruined his life and ours due to so little help and support for the individuals and their carers; caused me his mother to have a nervous breakdown. More help is needed in the community with

young adults with this type of disability.”

“In my experience a lot of people I know who are affected by ADHD do not know where to start to access services because they struggle with their diagnosis. They believe as an adult they have to 'get on with it' and become affected by anxiety and depression which can lead to self medicating through substance misuse, alcohol or other addictions, criminal activity and other compelling negative thoughts and behaviours which turn into a vicious cycle.”

“I was disappointed by the absence of any practical advice e.g support with learning, benefits advice for the future if needed, employment support, provision of therapy to teach strategies to manage ADHD, advice on local support groups, carer and service user involvement.”

“The service for autism is not good, there is little or no help (since NYCC closed all services) Need more help with how to deal with personal living skills, high levels of anxiety, where they can copy in community living and every level that accompanies the disorder.”

“I suffer with OCD very debilitating. GPs have no idea how to support autistic spectrum patients, recently changed GP Practice.”

“I would like to see more information in my GP Practice, who to contact when you need help, could I not have a key worker?”

“I have not been diagnosed, I am going round in circles.”

“As a child I was supported, but when I reached adulthood I was lost. Can we make sure our GP Practice

knows about what groups are available so they can share this with the patient.”

“Raise the awareness of autism, people need to know more about it and then people may be more

accommodating, particularly in the employment world.”

“I am happier since I got the diagnosis, but would like to see more support after you leave The Tuke Centre.”

“Staff in education need to be more aware of autism and what to look out for (from primary school, secondary to college). Support networks need to be available for young adults with the condition”.

The present service

“The services in North Yorkshire are extremely poor compared to the rest of the country. No follow up support is offered and a lot of the services offered in other areas are not even considered in this area just incase it may cost the local authority money.”

“Until I read the Scarborough news, I didn't even know about the service on offer- I have had to cope with my autism alone and haven't had support.”

“Autism services in Scarborough Ryedale are diabolical.”

“Lack of services across North Yorkshire for people living with diagnosed/ undiagnosed ASD- fall through gaps in service provision. Increase in mental health concerns for people living with ASD

but no specialised services to support.”

Recommentations From the feedback received, the key messages going forward are:

Further consideration of patients in transition period from child to adult services

If alternative locations are being explored, the preference for patients within the Scarborough and Ryedale locality is for a service to be available in Scarborough.

Autism awareness training to be available to all (GPs , healthcare professionals and front line staff). CCG to

consider having such training included at a S&RCCG Protected Time for Learning event.

Support Group and information to be more readily available in GP Practice and health clinics.

Next Steps The feedback received from the local engagement undertaken in Scarborough and Ryedale locality, will help inform

the service specification and form part of the main report produced by Vale of York Clinical Commissioning Group.

18 September 2018

Appendix 1

Appendix 2

Appendix 3

The TukeCentre

GP SupportServices

No Other(pleasespecify)

0.00%

20.00%

40.00%

60.00%

Are you (or the person you care for) presently receiving services

through (please tick which applies)

0.00%

20.00%

40.00%

60.00%

It was easy for me (or the person you care for) to gain access and be referred for

diagnosis?

0.00%20.00%40.00%60.00%

It was easy for me (or the person you care for) to get to

The Tuke Centre for appointments (including

transport, time and expense)

Responses 0.00%

20.00%

40.00%

60.00%

How did you (or the person you care for) travel to your

appointment? Please tick that apply

Responses

0.00%

20.00%

40.00%

60.00%

80.00%

Overall how would you rate your (or the person you care

for) experience of the service presently available?

Responses

Yes No N/A

0.00%

50.00%

100.00%

Whilst you were waiting for your appointment at The Tuke

Centre, was support available to you (or the person you care for)

from your GP and/or other …

Responses

0.00%20.00%40.00%60.00%80.00%

100.00%

Overall how would you rate the information available to patients

on autism spectrum disorder and ADHD?

Responses

0.00%10.00%20.00%30.00%40.00%50.00%60.00%70.00%80.00%

Overall how would you rate the support following diagnosis?

Responses

0.00%

10.00%

20.00%

30.00%

40.00%

50.00%

60.00%

70.00%

Do you consider yourself to have a disability? If so, please indicate the type of disability or illness you have. You may tick

more than one.

Responses

Yes No

0.00%

20.00%

40.00%

60.00%

80.00%

100.00%

If you have a disability, do you feel that there were any barriers

which made accessing the service difficult because of your

disability?

Responses

Yes No

0.00%

20.00%

40.00%

60.00%

80.00%

100.00%

Whilst you may not have a disability was there anything

which made it difficult to access the service?