We’ve been busy behind the scenes here at the YDRF ND subgroup but have had numerous bouts of burnout and exhaustion since our last blog post. There has been only two of us for some time, though we have recently been joined by a new third member which has really helped. If you would be interested in getting involved, please get in touch with us at nd@ydrf.org.uk
We’ve experienced the one year anniversary of the pilot project and our struggle against it in March. It’s been a very long year but onwards we trundle!
There’s quite a bit to catch up on, so feel free to break up your reading into short bursts.
YDRF Focus Group March 2024
We held a focus group for the ICB with regard to the autism and ADHD pathway. It was a nurturing and validating experience for those who got involved. Ali Spaul was our wonderful artist who developed our illustrated minutes showing not just the complaints about the current situation but our collective hopeful vision for the future.
*We are working on an audio description of this image and will put it here once completed.
The Retreat Release of Post-Diagnostic Packs for Autism and ADHD
In a display of solidarity with all those who are unable to access assessment and diagnosis, the Retreat have released their support packs which they usually give people after their diagnosis. So, if you are self-identifying and/or unable to access assessment, these packs might be helpful for you.
Autism Retreat Post-Diagnostic Support
ADHD Post-Diagnostic Pack 1 of 4
ADHD Post-Diagnostic Pack 2 of 4
ADHD Post-Diagnostic Pack 3 of 4
ADHD Post-Diagnostic Pack 4 of 4
YDRF Meeting with ICB and Retreat March 2024
The ICB hosted our second meeting in West Offices and we invited the Retreat to be involved in the discussion to ensure transparency and clarity. The minutes were taken by the ICB but have not yet been sent through.
We fed back community voices from our focus group and spent time explaining our significant concerns and frustrations around the Do It Profiler tool.
The ICB informed us of their proposed pathway for the end of the pilot. It is sadly very similar to what is currently happening.
The ICB proposal – do remember that none of this has been formally decided yet:
Referrals will be made by GPs and mental health teams based on very narrow criteria (as is the case currently). People who do not meet these criteria will be provided with access to the Do It Profiler and added to the ‘waiting list’ or they will be able to add their names to the ‘waiting list’ without completing the tool. There will be support to complete the Do It Profiler by a team within the NHS for those who are digitally excluded or struggle with forms. If people deteriorate sufficiently that they meet the criteria, they can return to their GPs who can then refer them.
There is currently no capacity in the system to even consider the people waiting on this list (waiting list 3 in our flow chart). The ICB’s argument is that by having this list in place, commissioners can make informed calculations on what funding would be required to meet the actual need in the area. If people were turned away or the pathway closed, the level of need would be hidden. Because of this list, they say they can campaign for funding to meet this need in the future.
The Retreat cannot hold the whole waiting list as they fear CQC would investigate them due to its length and potentially close them down. [This is a risk, but not very likely given the national picture]. The ICB is aiming to protect the Retreat by holding the list themselves ‘until resources become available’.
The Do It Profiler will no longer be used in accessing the referral pathway and only serve to provide “information and functional guidance” to those who feel they would benefit from this. We do not feel that any of our concerns about this tool have been taken into account as the ICB continue to claim the tool is useful and supportive to people despite significant, ongoing feedback to the contrary. While we have been told this is not set in stone, the reality is that this is a cheap and easy tool for the ICB to offer ‘something’. We hope they will consider more human, community-led resources instead and will be pitching this in our next meeting in May.
ND Parent Uprising
In order to recognise the particular challenges faced by parents of neurodivergent children (the majority of whom are neurodivergent themselves), we put on an initial meeting of our ND Parent Uprising group to gather people together in solidarity, support one another and share resources. It was an emotional and impactful session. A big thank you to everyone who came along to get involved.
The next step for this will be workshops on specific issues being faced e.g. child to parent violence. We will put out information on our social media platforms available below.
We raised the conflict of interest associated with the ADHD Foundation’s year-long “York Neurodiversity Project” in 8 of our schools due to their links with the Do It Profiler in the Health and Wellbeing Board last year. City of York Council (CYC) have been really receptive to our insights and are working with us to gain further understanding. This piece of work feels very positive and we are grateful to CYC for coming to us with open minds and an intention of partnership working.
Presentation at York Human Rights City Network
We presented the work of our campaign to the York Human Rights City Network steering group meeting as our case study was included in their recent Human Rights Indicator Report. The YHRCN gave us their full support and promised to provide any assistance they can.
In Case You Missed It
The NHS has released their Priorities and Operational Planning Guidance 2024/25. There is no mention of ADHD, but the key points relating to autism are:
- Reduce admissions of autistic people into mental health inpatient care and increase discharges into community settings. This should put a greater emphasis on provision for suitable housing options and care packages that meet the needs of autistic people.
- Ensure training for staff includes training in learning disability and autism, appropriate to their role, in accordance with the requirements of the Oliver McGowan Code of Practice.
- Improve autism diagnostic assessment pathways through implementation of the national framework.
The NHS has developed an ADHD Taskforce to look at ADHD service provision and its impact on patient experience expanding on the work done by NHS England.
Recent research conducted in Sweden of 148,578 individuals diagnosed with ADHD, found that medication initiation was associated with significantly lower all-cause mortality, particularly for death due to unnatural causes. This shows just how important access to medication through diagnosis of ADHD actually is and how high the stakes are.
Get in touch
Keep an eye on our social media (@yorkdrf on Instagram, Twitter and Facebook, links at the bottom of the page) to make sure you don’t miss anything.
You can also join the forum which signs you up to our monthly newsletter.
Email us nd@ydrf.org.uk
Leave us a voicemail on 01904 326781
Join the local ND community – Neurodiverse York Facebook Group