Access Denied: ADHD and Autism

by York Disability Rights Forum

Access Denied: ADHD and Autism

by York Disability Rights Forum
York Disability Rights Forum
Case Owner
Led by disabled people, we work to promote equal access to human rights for all disabled people. This injustice has affected us in York and North Yorkshire and we want to stop it spreading further.
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York Disability Rights Forum
Case Owner
Led by disabled people, we work to promote equal access to human rights for all disabled people. This injustice has affected us in York and North Yorkshire and we want to stop it spreading further.
Pledge now

This case is raising funds for its stretch target. Your pledge will be collected within the next 24-48 hours (and it only takes two minutes to pledge!)

Latest: Oct. 19, 2023

Update: ICB Response and our next steps

Thank you all for your continued support! 

We'd like to share an update on what we've been doing, and what's happening next.

We have now received a response to our legal challenge of t…

Read more

“Diagnosis gave me a way to live in a world that I didn’t know existed. Diagnosis saved my life. That is why assessment is a right, not a luxury.” Carla, YDRF member

Humber and North Yorkshire Health and Care Partnership have been piloting a system to “stem the flow” of autism and ADHD referrals since 27th March 2023. This means people in York and North Yorkshire are being denied access to clinical assessment and diagnosis.

Who Are We?

We are a small group of passionate neurodivergent volunteers working together to support people to access their right to assessment for ADHD and Autism.

We represent the Neurodivergent subgroup of York Disability Rights Forum which is a disabled-led organisation fighting for disabled people’s human rights in the City of York.

Despite our local York roots, we are fighting a decision which has also impacted North Yorkshire, Selby, Tadcaster, Easingwold and Pocklington. We recognise that this case exemplifies something happening across the country where our neurodivergent community are being refused access to NHS care and forced to seek diagnosis and support from private companies instead.

The Pilot Eligibility Criteria

Adults who approach their GP seeking an autism and/or ADHD diagnosis are being refused access to assessment unless they meet one or more of the following criteria:

  • Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place.
  • Risk of being unable to have planned life-saving hospital treatment, operations, or care placement
  • Imminent risk of family court decisions determined on diagnosis e.g. family breakdown, custody hearing

Instead of accessing help, people are sent home to complete a generic online questionnaire - the Do-IT Profiler.

We are concerned that these exclusions are likely to have a negative impact on mental health in a population already vulnerable to self-harm and suicide. 

The criteria also prevent GPs from referring people through Right to Choose pathways for assessments of ADHD and autism – despite the legal right to assessment with a suitably experienced and qualified professional, as set out in the NHS constitution.

Commissioners made this decision suddenly, without any consultation, due process, risk assessments or equality impact assessments, despite multiple ongoing links with the local neurodivergent community, disability and self-advocate groups.

The Time is Now

The pilot was due to end on the 27th June but we have been informed that the pilot has now been extended. The commissioners published a vague statement without informing stakeholders on the 14th July and despite requesting further information directly, none has yet been received.

They have continued to neglect us and leave the voices of our community unheard. There is still no evidence of any risk assessment or Equality Impact Assessment. There has been no attempt to engage in consultation.

The commissioners are acting as if they are above the law, NICE guidelines and the NHS constitution. All avenues of accountability have failed so far, but we believe a legal challenge could make change happen for our community.

We know that this case will be important to inspire other groups across the country in their own fights and we encourage everyone to join us in solidarity and stop the spread of this systemic exclusion to other areas.

We cannot allow our NHS to refuse to diagnose autism and ADHD, while they continue to thoughtlessly misdiagnose our neurodivergent community with Borderline/Emotionally Unstable Personality Disorder, schizophrenia and bipolar disorder.

Join Us

Help our neurodivergent community fight back!

We aim to raise £5,000 (stretch target £10,000) to fund legal advice.

We have instructed Bindmans LLP to investigate and advise us on this issue.

We cannot do this alone, so please join us in sharing our story and demanding justice.

Every donation, no matter how small, will make a big difference.

Spreading the word can be just as valuable as financial support.

Thank you so much.

If you want to see what we’ve been up to since March, please visit our page dedicated to this issue on our website.

Update 4

York Disability Rights Forum

Oct. 19, 2023

Update: ICB Response and our next steps

Thank you all for your continued support! 

We'd like to share an update on what we've been doing, and what's happening next.

We have now received a response to our legal challenge of the pilot

The reply from the Humber and North Yorkshire Integrated Care Board (ICB) does not address the majority of legal issues raised by our team at Bindmans LLP - as a result, we have been taking further legal advice.

The ICB acknowledged limited wrongdoing but refused to stop the pilot or coproduce an alternative. They continue to show a marked lack of engagement with risk and safety concerns.

Change of Criteria

It has also come to light that one of the criteria for assessment has changed (we have covered this in our recent blog post). The reference to imminent self-harm has been replaced with directly referral by the Community Mental Health Team meaning you must already be under their care. There are significant barriers to being referred and accepted onto these teams, putting pressure on an already stretched service and further reduces the number of people eligible for referral for autism and ADHD assessment.

There has also been a lot of confusion around waiting lists. We have endeavoured to support people’s understanding with this flow chart.

What's next?

The ICB have offered to meet with the York Disability Rights Forum (YDRF), and we plan to take them up on this offer. We want to know what you would like us to communicate on your behalf. It is important that the whole community - not just us - are heard.

We will also continue to ensure that those affected understand what is happening now, and what they can do to raise their voices. The campaign does not end here.

Bindmans LLP, acting on behalf of YDRF, will also be responding in writing to the ICB.

Make your voice heard

Whether you're directly impacted by the pilot, an unaffected member of the neurodivergent community, a professional working in this area or an ally wanting to support - you can tell us your thoughts here.

These next steps would not be possible without your support and donations to our #AccessDeniedND CrowdJustice campaign. Thank you once more for standing with us as we continue our fight.

Update 3

York Disability Rights Forum

Sept. 20, 2023

Legal Letter Sent!

Thanks to your amazing support, yesterday our legal team issued a letter outlining the multiple ways in which the Humber and North Yorkshire ICB's Autism and ADHD Pilot Pathway is unlawful.

You can read the letter in full here but the main grounds are the failure to:

  • follow statutory duties and guidance (including NICE Guidance)
  • properly consider the risks associated with the decision
  • consult and include people affected in decision making
  • provide clear information to facilitate understanding 
  • respect human rights and patient rights 
  • follow data protection law and protect sensitive patient data

Our letter states

 "The ICB is acting unlawfully in continuing with the Pilot Pathway and must immediately cease its operation" and "if the ICB stops the Pilot Pathway and agrees to coproduce a solution, YDRF will support them in this process."

It goes on to list the minimum steps necessary in order to properly consult and coproduce a solution to the long waits for ADHD and Autism assessments in York and North Yorkshire and warns: "should the ICB not take these steps it is likely that we will be instructed to bring legal proceedings."

Let's see what happens now...

We can't quite believe that the ICB have continued with this pilot despite acknowledging amongst themselves that they have been breaking the law. (We have seen documents that admit as much, as a result of many Freedom of Information Requests, summarised in our blog post). Hopefully this action will encourage them to rethink their decisions. 

The ND community has done us proud

We really couldn't have done this without each and every one of you spreading the #AccessDeniedND campaign and contributing funds to this challenge. Please continue to share this action and raise awareness of what is happening here.

As we have said before, although this pilot is taking place in York and North Yorkshire it affects our whole community. We must show that we will not stand by as services and waiting lists are restricted or closed around the U.K.

We are proud to stand with you now, as we send this letter and say again:

'Not On Our Watch!'

Update 2

York Disability Rights Forum

Aug. 12, 2023

WE DID IT! A huge thank you, and an update

Right, you amazing lot - we're thrilled to have reached the £5,000 target! Thank you so much to all of you for your generosity and for spreading the word. Reaching the target means Bindmans LLP can get started on the judicial review and we could not have done this without you!

In the meantime, we received a response to our Freedom Of Information request sent to the Humber & North Yorkshire ICB and we are floored

We have written a blog post to explain, but the highlights include:

  • By 13th June, 1250 people had accessed the Do It Profiler. Of this number, only 126 were sent on as eligible and are being 'triaged' by the Retreat to see if they can progress to the waiting list.

90% of patients have been rejected by this pilot.

  •  Under the risk of Health Inequality/Equality they admit: "The new criteria will mean that some individuals who would have previously received a referral for assessment and diagnosis will no longer be offered a diagnosis."
  • The Ethics Panel refer to THAT Panorama episode as evidence that the pilot is needed.

And finally, how they consider Patient Rights:

"The potential for conflict exists when some patients may feel that their right to a diagnosis is being denied. This is particularly the case in those who may already be on a long waiting list for referral to the Retreat. There have already been adverse comments in the local press from those who feel that they have been denied their rights.

These rights have to be balanced against the health professional's duty to distribute existing resources equitably and prudently. The new policy assures that the rights of those who are the most vociferous don't overrule the rights of those who are less assertive and might have a greater need."

Vociferous means loud and forceful. And yes, they are likely referring to us (YDRF), which is ironic, given we're not speaking for ourselves but for the whole ND community that they are leaving behind (remember that 90%?)

It's likely this fight won't stop at the first legal consultation, and we certainly aren't giving up. With that in mind, we are asking for your continued support towards the £10,000 stretch goal. 

We will continue to keep you all updated, and would like to thank you all again so much for your support - as a small group of neurodivergent folks doing this in our spare time, we are endlessly grateful for every single one of you!

Update 1

York Disability Rights Forum

July 24, 2023

Halfway: A massive thank you, and a call to action!

We are just over halfway to our goal! We'd like to take this opportunity to say a MASSIVE THANK YOU to everyone who has donated and spread the word so far! We cannot put into words how much your support means to us.

Not only are you fighting for the local neurodivergent communities affected by this pilot, you are also fighting for all of us. Our access to healthcare is being compromised across the UK: winning this fight will send a powerful message to the Government and to healthcare decision-makers.

But we're not there yet. 

Please do continue to donate what you can, spread the word, and get more to join the fight! ✊🏻

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