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Greater awareness behind ADHD surge, study suggests

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Greater awareness behind ADHD surge, study suggests

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ADHD is a neurodevelopmental condition characterised by difficulties with concentration, energy levels, impulsiveness, or by a person's ability to manage their time.

The study, published in the Journal of Affective Disorders, comes as a national taskforce in England is looking at what this rising demand for support means across the NHS, education and justice sectors.

Figures published last week by NHS England estimated there were nearly 2.5 million people in England with ADHD, with more than 550,000 currently waiting for an assessment. Every month 20,000 more people are referred for support, a 13% rise on this time last year.

NHS England has admitted patients are waiting "too long for assessment and diagnosis".

Patient watchdog Healthwatch England has also campaigned on the issue, calling for better support.

A report it published last week highlighted how ADHD can lead to people struggling in work and education and emphasised the importance of them getting a diagnosis to help understand and manage their condition.

One woman, Alex, told the watchdog a diagnosis had helped her find ways to manage better and opened up access to medication which meant she was better able to care for her daughter.

"I just couldn't cope with normal things or keep a routine. It made living exhausting."

But the 32-year-old was only able to get a diagnosis after paying for private support.

"I'm lucky I could afford going private, but I know many people can't," she added.

Henry Shelford, of ADHD UK, said the condition had been ignored for too long.

"Increasing awareness and diagnosis is the key to unlocking the talents of over 2 million people in the UK.

"Doing so isn't just good for the individual, it's economically positive for the entire country."

Prof Edmund Sonuga-Barke, a fellow at the Academy of Medical Sciences and an ADHD expert at King's College London who was not involved in the research, said it was clear there had been a "chronic under-diagnosis" of ADHD in the UK.

He said while ADHD medications were safe, there needed to be more progress in developing a greater range of non-drug treatments and therapies to help people self-manage their conditions.

It comes amid criticism too many people are being placed on drugs to treat ADHD.

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Greater awareness behind ADHD surge, study suggests

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Study found ADHD is not becoming more common, despite a surge in people being diagnosed.

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Greatest Hits Radio (York and North Yorkshire)

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Report says children with special educational needs are being badly let down

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Families in York have been telling us about the “exhausting battle” to get the…

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AGENDA

1. Declarations of Interest - 06:18

2. Minutes - 06:44

3. Civic Announcements - 07:00

4. Public Participation - 07:26

5. Petitions - 26:27

6. Report of Executive Leader, Questions, and Executive Recommendations - 32:13

7. Report of Deputy Leader and Questions - 01:06:37

8. Motions on Notice - 01:13:34

9. Questions to the Leader or Executive Members - 02:53:52

10. Report of Executive Member - 03:12:25 11. Scrutiny - Report of the Chair of the Customer & Corporate Services Scrutiny Management Committee - 03:26:41

12. Recommendations of the Audit and Governance Committee - 03:27:20

13. Appointment of an Independent Member for Audit and Governance Committee and an Independent Person for Joint Standards Committee - 03:41:59

14. Appointments and Changes to Membership - 03:43:37

For full agenda, attendance details and supporting documents visit: https://democracy.york.gov.uk/ieListD...

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AGENDA1. Declarations of Interest - 06:182. Minutes - 06:443. Civic Announcements - 07:004. Public Participation - 07:265. Petitions - 26:276. Report of Exec...

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York Press report on long waits for autism diagnosis

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Siân Balsom, manager of Healthwatch York, said without a diagnosis there is "there is no help and support" available for people with autism.

Julia Casserly, director of communities at United Response, who coordinates the charity's supported living and community support services, added that "adequate funding and resources are needed to better support the care system".

An NHS spokesperson said the NHS is "fully committed to supporting and improving the lives" of those with autism.

The National Institute of Health and Care Excellence (NICE) has set a target time of 13 weeks for those with suspected autism to be assessed.

But figures from NHS England show around 4,545 people in the area covered by the NHS Humber and North Yorkshire Integrated Care Board had been waiting at least this long for an autism diagnosis at the end of 2023.

Of these, 71 per cent were under 18.

This was up from the same point a year before, when 2,615 people were waiting for 13 weeks or longer, most of them children.

Healthwatch York manager Ms Balsom told The Press: "We remain extremely concerned about waiting times for autism diagnoses, both for children and adults.

"We acknowledge that this is a national issue but this provides little comfort to the people waiting years to get the support they need."

Across England, referrals for autism have been on the rise for both adults and children.

Analysis from the Nuffield Trust - a think tank - shows the 172,000 open referrals in December is the highest figure ever, and a five-fold increase since 2019.

Thea Stein, chief executive of the Nuffield Trust, called the rise in demand "unprecedented", saying the NHS is struggling to meet it.

Across the country 136,000 people were referred to NHS autism services in 2023, with 7,570 of them in North Yorkshire and the Humber.

In 2022 there were 112,000 new referrals.

Parents feel they have 'fought for years to get the diagnosis' - Healthwatch York manager

Ms Balsom added: "We routinely hear from parents who feel they have fought for years to get the diagnosis we need, and recently heard from one parent who has spent 10 years asking for help but is still waiting for an autism assessment to be completed."

Ms Casserly from United Response told The Press: "It's important to see that beyond the numbers there are individuals trying to get the support they need to live, work and thrive in their community.

"Our work supporting people with learning disabilities and autism in York has shown us that diagnosis is only part of the story, as further support is needed to tackle the systemic barriers to meaningful employment facing autistic job seekers.

"Adequate funding and resources are needed to better support the care system from diagnosis, education, employment and mental health support if we are truly going to reform the system for those who need it."

Current system is 'not fit for purpose' - York Central MP

York Central Labour MP Rachael Maskell recognised that the NHS is experiencing an "unprecedented rise" in demand for autism assessments but said the current system in place is "severely underfunded to meet need and just not fit for purpose".

"The latest statistics provided by the National Autistic Society for Humber and North Yorkshire ICB show that 79 per cent of people waiting for an autism assessment have been waiting longer than the NICE recommendation of 13 weeks. Such long waiting times are tremendously stressful for individuals and their families, delay access to treatment and support, and can lead to poor mental health outcomes for autistic people," she told The Press.

"We also know that waiting for a diagnosis can mean children do not receive the support they should in education. Schools are not being adjusted anywhere near as quickly as they should be to suit the needs of neurodiverse students, which can lead to stress, anxiety and poor attendance.

"This data is extremely concerning and shows the scale of the national action needed to address the waits for Neurodiversity assessment and treatment. This is an issue I have raised not only locally with the ICB but also in parliament and with ministers directly."

She added that it is "essential" to address the "huge gap" in NHS, education and local authority resources so that people diagnosed with autism are offered the follow-up support they need for the future.

An NHS spokesperson said: "The NHS is fully committed to supporting and improving the lives of those with ADHD and autism which is why we have published new national guidance to help local areas manage the 50 per cent increase in referrals they have seen.

"NHS England has also begun important work into investigating challenges in ADHD service provision and last month launched a cross sector taskforce alongside the government, to help provide a joined-up approach for the growing numbers of people coming forward for support."

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'Extreme concern' over big rise in patients waiting months for autism diagnosis

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Thousands of patients are waiting months for an autism diagnosis in North Yorkshire and the Humber, figures show.

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The Haven, online learning centre for neurodivergent young people aged 13-17!

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The Haven, online learning centre for neurodivergent young people aged 13-17!

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Autistic Girls Network has launched The Haven, an online learning centre for neurodivergent young people aged 13-17!

AGN understand the unique strengths and needs of neurodivergent individuals and have long recognised the critical need for educational environments that truly understand and celebrate these differences. The Haven is born from this deep understanding and a passionate desire to create a truly supportive, flexible, and empowering learning space.

What is The Haven?

The Haven is a specialist online school designed specifically for neurodivergent girls and non-binary young people in the UK. We offer a neuro-affirming learning environment where individuality is celebrated, and education is tailored to meet diverse needs.

Why The Haven?

We know that traditional educational settings can often present significant challenges for neurodivergent learners. The Haven provides a much-needed alternative, offering:

A Neuro-Affirming Approach: Our entire ethos is built on understanding, acceptance, and celebrating neurodiversity.

Personalised Learning: Our flexible curriculum adapts to individual learning styles, paces, and interests.

Strong Mentorship: Learners will benefit from 1:1 and group mentoring with experienced, neurodivergent-affirming mentors.

A Supportive Online Community: Connecting with like-minded peers in a safe and understanding virtual space.

Focus on Wellbeing: Prioritising mental and emotional health alongside academic growth.

Empowering Future Success: Dedicated strands in self-advocacy, employability, and entrepreneurship.

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Prior to the 27th March 2023, GPs were able to refer directly into The Retreat for ADHD and autism assessment where patients would be put on the waiting list to await assessment

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HWY Report: Listening to ND Families in York

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HWY Report: Listening to ND Families in York

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We're working with the ICB to run engagement through Autumn. We'll keep you updated.

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Health and Wellbeing Board respond to the HWY report recommendations

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Health and Wellbeing Board respond to the HWY report recommendations

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AGENDA

1. Declarations of Interest - 03:36

2. Minutes - 03:48

3. Public Participation - 04:38

4. Report of the Chair of the Health and Wellbeing Board - 35:23

5. Health and Wellbeing Board Terms of Reference - 45:42

6. Report of the York Health and Care Partnership - 01:00:45

7. Report of the Health Impacts of the Cost-ofLiving Crisis - 01:19:57

8. Health Protection Annual Report - 01:49:23

9. Implementation, Delivery, & Performance Monitoring of the Joint Health and Wellbeing Strategy 2022-2032 - 02:07:00

10. Annual Report of the Director of Public Health - 02:15:28

11. Urgent Business - 02:27:30

For full agenda, attendance details and supporting documents visit: https://democracy.york.gov.uk/ieListD...

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Health and Wellbeing Board, 22 November 2023

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AGENDA1. Declarations of Interest - 03:362. Minutes - 03:483. Public Participation - 04:384. Report of the Chair of the Health and Wellbeing Board - 35:235. ...

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Introduction of pilot for new pathway From 27th March 2023 – 27th June 2023

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Introduction of pilot for new pathway From 27th March 2023 – 27th June 2023

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The pilot introduces the following criteria for referral for assessment:

1. Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place

2. Risk of being unable to have planned life-saving hospital treatment, operations, or care placement

3. Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing

Only those who meet one or more of the criteria will receive an assessment.

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The North Yorkshire and York Health and Care Partnerships are piloting the introduction of criteria for referral to assessment for adult autism and ADHD, and a new approach to screening for neurodiversity.

From Monday 27 March, referrals will be directly through a web-based screening and assessment system called Do-it Profiler. People seeking an assessment can be given access to the Do-it Profiler from their GP. The pilot is intended to test the new referral process and the Do-it Profiler approach over the next three months.

Commissioners in North Yorkshire and York have designed additional specific modules within the Do-IT Profiler system which are the ones determining eligibility for referral based on three assessment criteria. Commissioners have developed a mechanism for scoring the patient's response to the three eligibility criteria, and those who meet one or more of these directly to The Retreat for assessment.

(Note: The Do-IT Profiler itself does not make decisions on who is accepted or not for referral.)

All those who complete the profiler will receive immediate functional guidance and a unique profile describing strengths, challenges, and the skills to develop at home, socially and in the workplace.

The new approach is designed to connect people with support more quickly and help prioritise resources towards most at-risk adults.
Healthwatch York will conduct an independent assessment of the pilot. Feedback is welcome at any time and can be submitted to Healthwatch York on https://www.smartsurvey.co.uk/s/YorkAADHDPathway/or via email healthwatch@yorkcvs.org.uk. All feedback is welcome and will help inform evaluation of the pilot and future commissioning decisions.
Any comments or questions about the pilot, the criteria or the Do-It Profiler should be directed as follows:

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North Yorkshire and York Adult Autism and ADHD Assessment and Diagnostic Service - NHS North Yorkshire CCG

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The North Yorkshire and York Health and Care Partnerships are piloting the introduction of criteria for referral to assessment for adult autism and ADHD, and a new approach to screening for neurodiversity. From Monday 27 March, referrals will be directly through a web-based screening and assessment system called Do-it Profiler.

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York Disability Rights Forum has a detailed page on their response to the piloted pathway Autism and ADHD Assessment Access - York Disability Rights Forum (ydrf.org.uk)

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This page will keep you up to date of any developments in the discussion around access to adult autism and ADHD assessments in York and North Yorkshire.

*Geography update*
This pilot is taking place in North Yorkshire and the old footprint of Vale Of York. This includes York, Selby, Tadcaster, Easingwold and Pocklington

In our recent blog post we provide an overview of the current situation and the YDRF position (published 26/03/2023 and updated on 30/03/23).

On the 26th of May we are teaming up with HealthWatch to host a drop-in session at CVS (Priory Street) for you to come and speak to us about the current autism/ADHD assessments pilot. The doors open at 10am and we will be there until 12.30, come share with us your concerns, experiences, and feelings.

Template MP letter (uploaded - 12/05/23)

This letter can be used, and edited, by anyone who wishes to write to their MP to express their concerns or feelings about this pilot.
Template letter PDF
Template letter DOC"I have enormous respect for Prof Kirby and her achievements and as such, I cannot stand by while a CEO who has been a great advocate for the neurodivergent community publicly endorses measures like universal and unrestricted access to clinical assessment, while privately benefiting from work that undermines these aims and may put neurodivergent people at risk."
Please note: the Press has not been in touch with YDRF. The quotes they use are taken from the blog post above. Template letter ODT
"The undersigned suggest that the current diagnostic process needs to be urgently readdressed to ensure that changes do not have a negative impact on vulnerable individuals. Specifically, further consultation must include key stakeholders and full engagement with research evidence highlighted above"

"We know that waiting until people hit a crisis before help is offered, is an incredibly harmful, and potentially dangerous strategy. For ADHD and Autistic people to thrive we need to be opening up more diagnostic routes, not closing them down"

In light of @NHSEngland new guidelines on autism assessment published today, these bring further concern re the pilot in York/North Yorks imposed by @York_HCP which directly contravenes many of them. A thread.
- Free2BMe Therapy Services (@Free2BMeTherapy) April 6, 2023

Do It Profiler Blog Part 1 Do It Profiler Blog Part 2 Do It Profiler Blog Part 3
The Do It Profiler Experience

One of our members completed the Do It Profiler and live tweeted and blogged the experience

I am sure many will have heard about the new requirments to get an autism/ADHD assesment in York (& N Yorkshire)

Through what I can only describe as a clerical error I have ended up with access to the do-it profile
so welcome to my live tweet of it 😛 https://t.co/NDUhrVkyB5
- Hazel (@AnLasair) March 31, 2023

First tweet reads: I am sure many will have heard about the new requirements to get an autism/ADHD assessment in York (& N Yorkshire)
Through what I can only describe as a clerical error I have ended up with access to the do-it profiler so welcome to my live tweet of it 😛

The Retreat

The Retreat is the current provider of autism and ADHD assessments for adults in York and North Yorkshire.

They have published an information page on the changes.

What Have the Decision Makers Said?

Posted two days after the introduction of the pilot, North Yorkshire CCG informed its patients of the changes (29/03/23).

One day later and three days after it was introduced, Vale of York CCG posted exactly the same article to inform patients of the changes (30/03/23).

Issues Elsewhere

Sadly, a similar refusal to assess for autism is happening to children in Bristol, North Somerset and South Gloucestershire. Read about it in this Guardian article (26/03/23) and this excellent info graphic from Bristol Parent Carer Forum. UPDATE: The group Assess for Autism has now crowd funded for legal action and a letter before action has been sent to the ICB.

Portsmouth City Council introduced The ND Profiling Tool in April 2022 for children and young people. It is completed with a trained professional and helps identify strategies. The profiling tool must be completed before clinical assessment is considered, but there is no suggestion that an assessment would be refused. It acknowledges that the current waiting list is long at 18+ months.

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Autism and ADHD Assessment Access - York Disability Rights Forum

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This page will keep you up to date of any developments in the discussion around access to adult autism and ADHD assessments in York and North Yorkshire. *Geography update* This pilot is taking place in North Yorkshire and the old footprint of Vale Of York.

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York Press article on the piloted pathway

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Campaigners hit out at changes to adult autism and ADHD assessment in York

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York disability rights campaigners have hit out at changes to the way adults are assessed for autism and ADHD in the city.

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“I have been in tears for the last 4 hours. My gp sent me the link to the do it profiler which I completed today which shows I have many traits of autism. However I now understand that's it, I can't have a full assessment so can't get a diagnosis under your new system as you only select certain people for further assessment.”

“I'd like an explanation as to why this can't be pursued further. There is no other part of the NHS where you are not allowed to at least be put on a waiting list if you are displaying symptoms of a condition. I have worked for the last 30 years and contributed fully to tax and national insurance so why am I being told I can't access the NHS for further investigation. I am prepared that I may have to wait a considerable amount of time and consent to you looking at my report.”

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Healthwatch York contribute to Connecting our City ND and mental health.
We also sit on a local ND lead Neurodiversity partnership.

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Neurodiversity information and signposting coming to Live Well York

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Neurodiversity information and signposting coming to Live Well York

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In partnership with connecting our city and Neurodiversity partnership, Healthwatch York are helping to co produce a neurodiversity friendly information and signposting page. Watch this space...... THIS WAS PAUSED DUE TO CONNECTING OUR CITY MEETINGS BEING PAUSED.

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“I want to know, I want a diagnosis, I want help”

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“I want to know, I want a diagnosis, I want help”

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Pilot pathway for Autism and ADHD: Independent evaluation June 2023. Healthwatch York report published.

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If you need this report, or any other HWY information, in a different format - please let us know! We're happy to help. healthwatch@yorkcvs.org.uk

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"We heard from people who are extremely distressed and feel abandoned by the system as a result of the pilot. Their experiences must be heard as part of the pilot evaluation and factored into future plans for the service. We are looking forward to working with the Health and Care Partnership to make sure this happens and that all future pilots and new services meet equality legislation and national guidance."

"We are pleased to hear some things are changing and will continue to capture the experiences of people and professionals for the rest of the pilot."

Hilary Conroy, from York Disability Rights Forum, added: "The voices of those who are impacted by this pilot have been shared powerfully in this vital report; we urge people to read the experiences of those who are living with its consequences.

"Once again, we believe NHS leaders are making decisions behind closed doors without the input of the people affected. We urge them to listen to, and openly communicate with the people they are there to serve. Our community deserves better than this."

Healthwatch York encourage people to continue to share their experiences of the pilot via our short surveys:

For people trying to access a referral: https://www.smartsurvey.co.uk/s/YorkAADHDPathway/

For health and social care professionals: https://www.smartsurvey.co.uk/s/VY0L8Y/

The full report, ADHD and Autism Pilot Pathway: An independent assessment, and an executive summary are available at: https://www.healthwatchyork.co.uk/wp-content/uploads/2023/08/Independent-evaluation-pilot-pathway.pdf

For more information about the work of Healthwatch York visit: www.healthwatchyork.co.uk.

​Our Feedback Centre is now live. Share your experiences of health and social care services in York here: http://www.healthwatchyork.co.uk/services/

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Healthwatch York captures experiences of ADHD and autism assessment pilot

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Healthwatch York has today (3 August 2023) published a report outlining people's experiences of the new ADHD and autism assessment pilot.

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Under the 'pilot' system introduced by the Humber and North Yorkshire integrated care board (ICB) earlier this year, everyone seeking an assessment for autism or ADHD is now referred to an online 'Do-It Profiler' which they must fill in themselves.

Only those who meet specific criteria are then referred for further assessment - which means no adults except those facing 'immediate and life threatening health or family breakdown issues' are currently able to get assessed.

The system was initially piloted in March this year and was due to end on June 27 - but has now been extended for a further nine months.

The ICB says ADHD and autism assessments 'had been growing faster than we could see patients' - with waiting times in years rather than months.

The aim of the pilot was to try to 'prioritise those people with the greatest need', it said.

But, as reported by The Press last month, the York Disability Rights Forum (YDRF) says the pilot programme amounts to 'systemic exclusion', with the absence of assessments meaning people are not getting the support they need.

The YDRF has launched an 'Access Denied' crowdfunding bid to raise money for a legal challenge.

Now Healthwatch York has published a critical report highlighting the effect the new system has on adults desperate for a diagnosis.

The report, which took into account feedback from 245 people, says the system is 'inaccessible for people who are not online or need help to fill in forms', and adds: 'Many people who did not meet the criteria felt abandoned.'

One person who provided feedback wrote: "I have been in tears for the last four hours. My GP sent me the link to the Do-It Profiler ...which shows I have many traits of autism.

"However, I now understand ... I can't have a full assessment ... as (the ICB) only select certain people."

Emily Douse, Deputy Manager at Healthwatch York, said: "We heard from people who are extremely distressed and feel abandoned by the system as a result of the pilot.

"Their experiences must be heard as part of the pilot evaluation and factored into future plans."

READ MORE:

Hilary Conroy of the York Disability Rights Forum added: "NHS leaders are making decisions behind closed doors without the input of the people affected. Our community deserves better than this."

In a response, the ICB said the Healthwatch report would 'become part of the body of evidence that helps us improve our approach to adult autism and ADHD assessment'.

It said its pilot programme aimed to 'identify those most at risk'.

"Previously, all referrals were assessed in chronological date order and there was no system for identifying those people who needed help more urgently," it said.

"The changes are in the context of growing demand for adult autism and ADHD assessments."

The ICB said since the start of the pilot in March, some 'adjustments' had been identified following feedback. In future, it said, everyone registered on the 'Do-It Profiler' platform 'will be offered the opportunity to remain on a triage waiting list'.

But the York Disability Rights Forum said the 'triage waiting list' was simply an online register, not a true waiting list, and that the eligibility criteria for assessment referrals had not changed.

It has now raised £5,000 through its 'Access Denied' crowdfunder and hopes to start its legal challenge to the assessment system soon.

Read the full Healthwatch report here

'I've been in tears for four hours': what they say about autism and ADHD referrals

The healthwatch report on adult autism and ADHD referrals contains first-hand testimony from people who say they feel let down by the system.

One person who gave feedback said: "There is no other part of the NHS where you are not allowed to at least be put on a waiting list if you are displaying symptoms of a condition.

"I have worked for the last 30 years and contributed fully to tax and National Insurance so why am I being told I can't access the NHS for further investigation?"

Another added: "I have been in tears for the last four hours. My GP sent me the link to the Do-It Profiler which I completed today which shows I have many traits of autism.

"However, I now understand that's it, I can't have a full assessment so can't get a diagnosis under (the) new system as you (the care board) only select certain people for further assessment."

A third person who gave feedback said: "I am 48 years old, have a child with autism, another on an ADHD assessment pathway and my traits are seriously impacting my life on a daily basis.

"I was quite prepared to go on a waiting list and expected it to be at least a two year wait (it took five years for my son to get his diagnosis), but to be told I can't even go on a waiting list is devastating and I feel a waste of resources (my GP has spent time sending me the link, I spent time completing it and I'm not on a waiting list so will no doubt have to go through all this again at some point to get onto a waiting list)."

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York patients left 'abandoned' by lack of autism referrals, says Healthwatch

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York patients 'stressed and abandoned' by lack of autism referrals

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Under the 'pilot' system introduced by the Humber and North Yorkshire integrated care board (ICB) earlier this year, everyone seeking an assessment for autism or ADHD is now referred to an online 'Do-It Profiler'

ADULTS desperate for an assessment to diagnose whether they have autism or ADHD feel 'abandoned' by a new system which means they can't even get a referral, a damning report by Healthwatch York says.

Under the 'pilot' system introduced by the Humber and North Yorkshire integrated care board (ICB) earlier this year, everyone seeking an assessment for autism or ADHD is now referred to an online 'Do-It Profiler' which they must fill in themselves.
YOU'LL FIND MORE ON THIS STORY AND OTHERS AT www.yorkpress.co.uk OR PICK UP YOUR COPY OF THE NEWSPAPER ITSELF AVAILABLE SIX DAYS A WEEK AT YOUR LOCAL NEWSAGENT

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ADULTS desperate for an assessment to diagnose whether they have autism or ADHD feel 'abandoned' by a new system

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Under the 'pilot' system introduced by the Humber and North Yorkshire integrated care board (ICB) earlier this year, everyone seeking an assessment for autism or ADHD is now referred to an online 'Do-It Profiler'

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Author: Kathy Green Published 10th Aug 2023

Campaigners in North Yorkshire say they're horrified that some adults are being refused an assessment for Autism or ADHD.

Health bosses have been running a trial meaning only certain patients are put forward - for example if you are considered "at risk of immediate self harm or harming others".

"My ADHD assessment saved my life"

Carla Morris was diagnosed two years ago: "That assessment saved my life, now under the current restrictions I would not be eligible for assessment despite the fact that I was diagnosed with moderate to severe ADHD and now I can't imagine going back to my life pre diagnosis because it was very different."

"I was constantly going from job to job, because I would either constantly be late, I would need days off because I would be exhausted and wouldn't understand why. So I had all this potential and that was the message my whole life, you have so much potential but not understanding why I couldn't meet it."

"One of the reasons why I am fighting this so hard, it because of so easily been me, and I can see and appreciate how much my diagnosis has changed my life and improved my quality of life."

A crowding funding page has been launched to try challenge the pilot in court.

Healthwatch York have also commissioned their own report into how the pilot is impacting people.

A spokesperson for NHS Humber and North Yorkshire Integrated Care Board (ICB) told us:

* The waiting list for ADHD and autism assessments had been growing faster than we could see patients.

* Unfortunately waiting times are currently in years rather than months.

* We wanted to pilot changes so we could see more patients - and prioritise those people with the greatest need.

* The profiler we've been piloting means people who are referred for assessment have already provided a lot of the information that's needed, meaning there's quicker diagnosis and the capacity to therefore help more people.

* Everyone who registers with the platform is now given the opportunity to remain on a triage waiting list and, based on their needs, is either referred for an assessment or offered/signposted to appropriate relevant support whilst they wait.

* We don't know if demand will start to stabilise, but if it does, and we start getting more people through their assessments, then the waiting list time should come down.

* But at this moment, we need to continue to see people based on priority, rather than the overall time they have been waiting.

* We would of course want to move towards seeing everyone who needs an assessment as soon as we can.
Hear all the latest news from across the UK on the hour, every hour, on Greatest Hits Radio on DAB, at greatesthitsradio.co.uk, and on the Greatest Hits Radio app.

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Anger over changes to ADHD and Autism assessment in North Yorkshire

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Campaigners in North Yorkshire say they're horrified that some adults are...

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@ - Health, News
YorkMix

A report has criticised an NHS ADHD and autism assessment pilot saying it is not getting people the diagnoses they need.

In a Healthwatch York report on Humber and North Yorkshire Integrated Care Board's (HNYICB) new pilot scheme, Do-It Profiler, to assess people who may have ADHD or autism, the watchdog made several recommendations to improve the service.

Healthwatch York spoke to users of the Do-It Profiler, many of whom were worried that without an official diagnosis, the assessor itself won't help them get the extra support they need.

One user is quoted as saying: "The report was very useful for identifying ADHD and dyspraxia as things I should definitely look into, as well as questions about dyslexia and dyscalculia. However, it did not tell me anything new in terms of coping mechanisms, strategies or techniques."

Another said: "I know these things already; [it is] completely useless to me. I need a diagnosis."

Others quoted said they were worried that without an official diagnosis, their employers wouldn't accept they needed extra help.

Emily Douse, deputy manager at Healthwatch York, said: "We are pleased to hear some things are changing and will continue to capture the experiences of people and professionals for the rest of the pilot."

Hilary Conroy, from York Disability Rights Forum, added: "We believe NHS leaders are making decisions behind closed doors without the input of the people affected.

"We urge them to listen to and openly communicate with the people they are there to serve.
"Our community deserves better than this."

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Healthwatch York criticises ADHD and autism assessment

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@ - Health, News YorkMix A report has criticised an NHS ADHD and autism assessment pilot saying it is not getting people the diagnoses they need. In a Healthwatch York report on Humber and North Yorkshire Integrated Care Board's (HNYICB) new pilot scheme, Do-It Profiler, to assess people who may have ADHD or autism, the watchdog made several recommendations to improve the service.

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That's TV York on Twitter: ".@healthwatchyork has outlined its recommendations for an NHS pilot in York that is changing the way ADHD and autism assessments are processed in an attempt to improve results.Concerns have been raised that users may not get the support or diagnoses they need. pic.twitter.com/wb25NWgIZh / Twitter"

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@healthwatchyork has outlined its recommendations for an NHS pilot in York that is changing the way ADHD and autism assessments are processed in an attempt to improve results.Concerns have been raised that users may not get the support or diagnoses they need. pic.twitter.com/wb25NWgIZh

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A new screening system for adults wanting an autism or ADHD diagnosis has rejected up to 85% of requests for a referral since it was launched, adding to concerns from campaigners who warn it could become a blueprint across the NHS.

In March, NHS bosses in York and North Yorkshire launched a pilot of a system for adults seeking an autism or ADHD diagnosis in response to rising demand and long waiting times.

The move was billed as a way of prioritising those most at risk. Under the new "pathway", people wanting a referral for a diagnosis have to fill in an online questionnaire - the Do-IT Profiler - access to which can only be given by a GP or health professional. The profiler then makes referrals only for those who meet tight criteria.

Figures provided by Humber and North Yorkshire Integrated Care Board (ICB) in response to a freedom of information request show that, since the pilot launched on 27 March, there have been 3,254 registered users of the Do-IT Profiler but only 501 referrals.

That means just 15% of those who used the online questionnaire are being referred for an assessment. And in a sign of the impact of long waiting times - currently around 2.5 years - none of the 501 referrals has yet led to an assessment actually taking place.

Initially a three-month scheme, the pilot has been extended until next June.

"Even those who have met the incredibly limited crisis criteria have not been seen," said Hilary Conroy of York Disability Rights Forum. "The rhetoric around 'prioritising those most at risk' sounds hollow when confronted with these facts.

"If this pilot is considered successful, it will be rolled out across the UK, and neurodivergent people will be deprived of lifesaving and lifechanging assessment, treatment and support. Other areas are approaching the increased demand for assessment with patient voice at the centre of decision-making, and planning for increased investment in contrast to this unlawful denial of patient rights."

However, the Observer understands that even those who qualify are not immediately referred for an assessment - they are referred for clinical triaging, which has a waiting list of 12 to 15 months.

A diagnosis allows many people to understand themselves, and thrive, in a way they haven't before

Henry Shelford, ADHD UK

Only if accepted after triage would they join the 2.5-year waiting list for an assessment.

Anyone who doesn't qualify through one of the three routes will only be triaged and referred for an assessment at "such time capacity allows", which given current waiting times is likely to mean they are stuck in limbo indefinitely.

An independent assessment of the first three months of the pilot by Healthwatch York found significant problems with accessibility and a lack of support for those not referred for an assessment by the profiler.

Emily Douse, of Healthwatch York, said the findings highlighted some unanswered questions regarding how decisions have been made and how the pilot was implemented. "We've heard some distressing examples of how the pathway has impacted those seeking a diagnosis, and the wider community. ICBs need to meaningfully engage with those impacted, only then can informed decisions be made about how best to serve the neurodivergent community."

Recent years have seen a huge rise in demand for autism and ADHD diagnoses amid increased awareness and publicity. Many adults are coming forward who were not diagnosed as children, when the conditions were less well understood.

Celebrities such as Christine McGuinness and Melanie Sykes have talked openly about being diagnosed. McGuinness and her husband featured in a 2021 documentary, Paddy and Christine McGuinness: Our Family and Autism, which covered their children's diagnoses. This year, Christine McGuinness: Unmasking My Autism followed the 34-year-old as she learned what it means to be a late-diagnosed autistic woman.

Chris Packham is another well-known name to have received a later-in-life diagnosis, opening up about his Asperger's in a film five years ago, as is Johnny Vegas, who was diagnosed with ADHD at 52.

The ADHD Foundation has indicated a 400% rise in the number of adults seeking a diagnosis since 2020, while NHS figures show the number of new suspected autism referrals for over-18s has trebled since 2019. Underfunded NHS mental health services have struggled to cope.

"The increase in getting people help should be celebrated rather than questioned," said Henry Shelford, CEO of charity ADHD UK, who highlighted a Canadian study that found one in four females and one in 10 males with ADHD attempt suicide at some point. "There is no physical illness where an increase in the percentage diagnosed is seen as a problem. It appears to be almost exclusively an attack that ADHD suffers from.

"A diagnosis allows many people to understand themselves, and thrive, in a way they haven't before. We talk about pre-diagnosis being like you're in a maze and the lights are off. You're bumping into things, hurting yourself and others. A diagnosis turns the lights up."

Humber and North Yorkshire ICB said that without the pilot it was likely the waiting list would have closed, leaving no provision for applicants.

This article was amended on 31 October 2023 to credit the pilot to Healthwatch York and to add a comment from the organisation.

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Adult ADHD and autism assessment requests blocked by NHS screening system

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Yorkshire pilot scheme to combat rise in waiting times has not resulted in a single appraisal

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Adults with ADHD 'live shorter lives than they should'

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Adults with ADHD 'live shorter lives than they should'

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Adults with ADHD 'are living shorter lives than they should', say researchers who analysed life expectancy in GP patient records.

The UK study found a reduction in life expectancy for men with diagnosed ADHD of between 4.5 and 9 years, and between 6.5 and 11 years for women.

It is likely to be a result of 'modifiable risk factors' as well as unmet support and treatment needs for both ADHD and co-occurring mental and physical health conditions, the team from University College London concluded.

The findings, reported in the British Journal of Psychiatry, were based on 30,029 adults across the UK with diagnosed ADHD was compared with 300,390 patients without the condition who were matched by age, sex, and GP practice.

But they noted the research was done in those who had been diagnosed with ADHD and may not apply to the much wider population of adults who the condition but no formal diagnosis.

The prevalence of ADHD in the patient records looked at was 0.32%, suggesting that only one in nine adults with the condition were diagnosed, the researchers said. It may mean that the overall life-expectancy found was higher than the average for all those with ADHD, they added.

Senior author, Professor Josh Stott, professor of ageing and clinical psychology at UCL, said: 'It is deeply concerning that some adults with diagnosed ADHD are living shorter lives than they should.

'People with ADHD have many strengths and can thrive with the right support and treatment. However, they often lack support and are more likely to experience stressful life events and social exclusion, negatively impacting their health and self-esteem.'

Study lead Dr Liz O'Nions, a research fellow at UCL, added that more of those who are diagnosed may have additional health problems compared to the average person with ADHD.

'Therefore, our research may over-estimate the life expectancy gap for people with ADHD overall, though more community-based research is needed to test whether this is the case.'

She added: 'It is crucial that we find out the reasons behind premature deaths so we can develop strategies to prevent these in future.'

Professor Philip Asherson, professor of molecular psychiatry at King's College London, said: 'This is an excellent and well conducted study that highlights the impact of higher mortality rates in ADHD on shorter life expectancy.

'The precise causes of early death are not yet confirmed, but we know that ADHD is associated with higher rates of smoking, obesity, cardiovascular disease and cancer among other health problems.

'Adults with ADHD are more likely to engage in unhealthy habits such as binge eating or smoking, and risk-taking behaviour.

'There may also be biological links with autoimmune and other physical health disorders.'

He added that services to support adults with ADHD and improve both physical and mental health outcomes lag behind those for other common conditions such as anxiety, depression, hypertension and obesity.

'Of particular concern are limited access to diagnosis and treatment including psychosocial support. Until this is addressed the shorter life expectancy demonstrated in this study is likely to continue.'

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Adults with ADHD 'living shorter lives than they should', GP records study finds

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Adults with ADHD 'are living shorter lives than they should', say researchers who analysed life expectancy in GP patient records.

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Healthwatch York are running an independent evaluation of the pilot.

Share your experience here:

https://www.smartsurvey.co.uk/s/YorkAADHDPathway/

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HWY ADHD/Autism diagnosis pathway report discussed at the Health and Wellbeing Board

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HWY ADHD/Autism diagnosis pathway report discussed at the Health and Wellbeing Board

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Health and Wellbeing Board, 20 September 2023

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December HNY ICB Engagement event: Slides 

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December HNY ICB Engagement event: Slides 

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Slides

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December HNY ICB Engagement event: Summary minutes 

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December HNY ICB Engagement event: Summary minutes 

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Minutes from the in person public event.

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"There has been a number of conversations and further developments on the proposed emerging pathway..... with some elements of the pathway still to be agreed by our providers.

"We have made the difficult decision to ask you to postpone delivering a focus group until the proposed pathway has the support and agreement of our providers."

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HWE report: How to improve ADHD support 

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HWE report: How to improve ADHD support 

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The impact ADHD has on people’s lives can be profound and can be spread across multiple areas of their life. Our new report highlights these impacts and the changes we are calling for to ensure everyone gets the support they need.