Playing the Waiting Game

As we start to get used to the idea of a new year, our Neurodivergent (ND) community remains bound by the York and North Yorkshire autism and ADHD assessment pilot. You can access everything we have done since March 2023 on our dedicated webpage. This blog will update on the various activities YDRF has been engaged in over the past two months.

Thank You

We would like to start by saying a big THANK YOU to everyone who got involved last year in any way, on any platform. You have ensured that this pilot has not become the default and encouraged decision makers to ensure they understand the needs of the patients they are serving before making these decisions.

Meeting with the ICB 7th December 2023

Following Humber and North Yorkshire Integrated Care Board’s (ICB) invitation through their legal letters, YDRF agreed to meet with representatives of the ICB and published the minutes.

Within the meeting we relayed voices of neurodivergent people, shared the concerns we have had from the beginning directly and corrected some of the worrying misconceptions of the decision-making representatives we met.

The aim of this meeting was to open the door to ongoing communication between us and we have agreed to a follow up meeting.

The ICB publish updates on their dedicated webpage.

Engagement events 12th and 14th December 2023

The ICB held two engagement events, one in person and one online in December. YDRF attended both and also received feedback from other ND community members who attended.

The in person event in particular caused significant concern regarding people’s wellbeing, and a lack of information and clarity from the ICB. We collated the comments we received and fed back to the ICB the impact of these events on our community.

We have been assured that the ICB learning from the events will be published within the next few weeks, so we should be able to see what they have heard and how (or if) they plan to adapt the pilot as a result.

If you have any further feedback, you can contact the ICB directly hnyicb-ny.adultnd@nhs.net or email us at YDRF nd@ydrf.org.uk.

YDRF Legal Letter #3

Our legal representatives advised us to send a short clarifying legal letter following the ICB’s assertion that the pilot did not amount to a change of service.

It is important that we are clear, this is a significant change (which the ICB acknowledge directly in their Integrated Impact Assessment) and therefore they have a duty to consult under Gunning principles (you can read what these are in YDRF Legal Letter #2).

Meeting with Patient Choice at NHS England

We recently met with representatives from Patient Choice at NHS England specifically to discuss with them the issue of the patient’s Right to Choose under this pilot. While there were many complexities involved that will take time to unravel, one thing was crystal clear. The ICB should not be blocking patient choice.

The clinical decision of whether to make a referral for autism or ADHD assessment sits with the GP, not the ICB. The GP, as the referring clinician, decides if a referral is clinically appropriate and is encouraged to consider all the options available.

Accountability for what happens next also sits with the GP. Patient Choice wondered if GPs were willing to accept clinical accountability for referrals made through the Do It Profiler. Any GPs with thoughts on this are welcome to email us nd@ydrf.org.uk

If a patient requests a referral for autism or ADHD assessment under Right to Choose and is refused, Patient Choice encouraged individuals to get in touch with them so they can investigate. Their email is england.choice@nhs.net

We understand that funding is a massive issue across the NHS, and Right to Choose options cost the ICB an enormous amount of money. However, patients should never be made to feel responsible for this underfunding – that issue is not theirs to bear.

Some consider Right to Choose as a way of “skipping the queue” and providing an unfair advantage to those who “shout loudest”. Unfortunately, with this pilot pathway (unless you meet the criteria) the ‘queue’ is endless, and people have no reassurance that an NHS assessment will ever happen.

Patient Choice have agreed to try and untangle some of the complexities and get back to us, so we will provide any updates as we go.

York Neurodiversity Project

We were recently informed about a year-long project aimed at schools across the city to embrace a strengths-based approach to neurodivergence. A necessary and great aim, we’re sure the ND community would agree.

However, we were concerned to discover that it is being rolled out by the ADHD Foundation. This charity is chaired by Prof Amanda Kirby who is also the CEO of Do It Solutions, the private company responsible for the Do It Profiler.

We are waiting to learn more about the plans and will keep you updated.

Waiting

The theme of the blog today is waiting. We, along with the wider ND community, have done our very best to raise the voices of people impacted by this pilot. There are 6 long months of the pilot to go. (It is due to end on 27th June 2024). We are waiting now to see the impact of our voices and efforts, waiting for more information and clarification, waiting for another date to meet with the ICB.

However, we are not twiddling our thumbs, there are plenty of plans being made to connect with and support our community. We will share them with you once we have confirmed dates and venues for some really exciting events. Watch this space!

Get in touch

Email us nd@ydrf.org.uk

Leave us a voicemail on 01904 326781

Join the local ND community – Neurodiverse York Facebook Group

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