Important changes to how we receive Autism and ADHD referrals

Important changes to how we receive Autism and ADHD referrals

What are we commissioned to provide?

The Autism and ADHD services at the Retreat clinics are currently resourced and commissioned to receive an estimated 720 referrals per year (60 per month) however due to an unprecedented increase in demand throughout 2022 and 2023 our referral rate increased considerably and on average we received 1840 referrals per year (153 per month) which unfortunately has impacted on our ability to respond as quickly as we would like to, if you have not heard from us regarding your referral and whether you have been accepted onto our waiting list this will be because you are still in triage – at present we estimate that this delay will be around 12-15 months.

We are commissioned to provide the below assessments per year –  

Due to the increased demand on our services, we are continually exploring ways to make changes to our assessment pathways so that our clients receive efficient and robust assessments whilst ensuring that we see as many people as we can, however, please be aware that we are unable to beyond our commissioning capacity due to limitations within our current NHS contract.

 

Update

This is an update regarding changes in the referral pathway for Adult Autism and Attention Deficit Hyperactivity Disorder (ADHD) assessment Service at The Retreat Clinics in North Yorkshire and York. This is a commissioner led change, resulting from actions from the local NHS Integrated Care Board (formally known as the NHS Clinical Commissioning Groups), to pilot the introduction of the criteria for referral to assessment and a new approach to screening for neurodiversity. This applies to new referrals. The changes come into effect from Monday 27 March 2023.

Why have these changes been made?

Autism and ADHD services across the nation have seen a steady increase in demand over recent decades. At The Retreat Clinics, this demand now far exceeds our capacity as a service with an increase of 400% in referral rates. This issue is something that is currently receiving significant focus from both our local Trust and regional commissioners. The changes have been made to pilot a new pathway and way of working.

What do the changes mean?

Please meet with your General Practitioner (GP) if you are seeking a diagnostic assessment for Autism/ADHD and you live within North Yorkshire and York. Your GP will be able to guide you through and explain the new pathway. Referrals will be directly through a web-based screening and assessment system called Do-it Profiler.

What is Do-it Profiler?

Please watch the video in the following link which explains it all: https://doitprofiler.com/

Whilst the Do-it Profiler does not give a diagnosis, the Neurodiversity Screener will identify characteristics and provide a unique profile describing strengths, challenges, and the skills to develop at home, socially and in the workplace. The profile will also identify where reasonable adjustments should be made which should start as a basis for discussion with occupational health, employers, and educational environments. All clients who complete the profile will receive immediate functional guidance and signposting to support networks.

Once logged in, the profiler will ask you an initial set of questions to determine whether you will be referred on to The Retreat for an assessment for diagnosis or be directed through the profiler for access to support and useful resources. Everyone who completes the profiler will receive immediate functional guidance and signposting to support networks. These changes are part of a pilot, and the commissioners welcome your input. There will be an opportunity to provide feedback within the profiler tool which we would encourage you to do. This will help the commissioners to collate information as part of our evaluation and inform future commissioning decisions.

For some people, a referral is still appropriate and will be made to us through the profiler. Please allow time for our clinical team to consider your referral (called ‘clinical triage’ please note there is a delay in receiving your referral and accepting/rejecting your referral this wait is estimated between 12-15 months). Once we have considered your referral, we will be in touch with you directly to let you know if a diagnostic assessment will be offered – we will backdate any referral accepted onto our waiting list to the date the referral was made.

Please note that due to limitations on information provided to our clinical team resulting from the use of the profiler we may request further information from you and your GP to support your referral prior to triage.

For further information on the Do-It Profiler, including technical support, any questions on how friendly it is for Autism, ADHD and learning difficulties, or what to do if you don’t have access to a device or technology, please contact:

If you are within North Yorkshire: hnyicb-ny.engagement@nhs.net

If you are within York: hnyicb-voy.contactus.yorkhcp@nhs.net

The Retreat Clinics are not providing the Do It Profiler, as this is a commissioner change to the pathway. Therefore, please do not contact us to seek guidance or advice on the Do It Profiler, as we will only be able to provide you with the same information as explained here.

Can I access assessment and treatment from an alternative provider?

This is a piloted change to the commissioned pathway and the eligibility criteria will therefore also apply to other providers, including online private providers. Referrals which fall outside of the eligibility criteria will not be reimbursed by the NHS.

If you are eligible for assessment, you have a legal right to choose your specialist provider. We suggest you discuss this option with your General Practitioner. You may also prefer to obtain private care, but please ensure you clarify the details with your General Practitioner, as for ADHD services, there are no shared care arrangements in place between primary care and private providers and you will be expected to continue to pay for your medication rather than this being prescribed by your local practice. Using an alternative provider may offer you more timely access to assessment and treatment. That said, it is worth clarifying with the provider what they provide before getting a referral to avoid disappointment. Eligibility criteria applies to all providers and general practice will be encouraged to direct patients to the Profiler and not make NHS referrals to other providers. Referrals which fall outside of the eligibility criteria will not be reimbursed by the NHS.

What if I disagree with this change of pathway for the diagnostic assessment? Where do I go to for any complaints or queries? 

Please contact:

If you are in North Yorkshire: hnyicb-ny.engagement@nhs.net

If you are in York: hnyicb-voy.contactus.yorkhcp@nhs.net

Please do not call The Retreat Clinic’s administration team to enquire about the change to the pathway and process: our team will not be able to advise or comment on the Do It Profiler, or the commissioner led changes. They will only be able to advise you with the same information provided here: you need to make contact using the details above.

I am not a ‘new’ referral, what does this mean for me?

The commissioner-led change is for referrals received from 27 March 2023.

If you or your referrer have received notification you are on our ‘awaiting triage’ list, we will be honouring this and triaging your referral. Please do not contact us to enquire about waiting times, as we cannot comment specifically or individually on how long it will take us to triage your referral.  For current waiting times (CLICK HERE)

If you or your referrer have received notification that your referral has been accepted, then you will remain on our waiting list and we will be in touch when it is time for your assessment.

What are your current waiting times?

Waiting times for assessment:

We recognise and appreciate that people requiring our Autism & ADHD services have lengthy waiting times. This is something we are trying to address. Whilst we acknowledge how difficult it is to wait, we ask people to please not contact the service regarding their wait time as this is often changeable but unfortunately lengthy.  For current waiting times (CLICK HERE)

Escape Routes & The Importance Of Being In Control

By Ronnie Pinder, Coach & Peer Mentor at The Retreat Clinics

 There is a strategy that can help many autistic people and that is always planning your escape routes in advance and therefore making you feel in more control of a situation that may otherwise cause anxiety.

Escape routes can be literal but they don’t have to be. An example of a literal escape route is scanning a building we’ve not been in before for the exits. How can I get out of here in the quickest time possible without drawing too much attention to myself? Many of us who are autistic have abandoned shopping trollies in supermarkets due to feeling overwhelmed, often from too much sensory input. I have supported many people who don’t realise that they’re planning escape routes when entering a new and unfamiliar room, but I often see them scanning the room for exits and very carefully choosing which chair to sit on.

For an example of a less obvious escape route, I’ll use a personal experience. For many years before my own diagnosis, I couldn’t figure out why I was so scared of motorways. It was only after finding out I was autistic and in turn discovering explanations for some of my experiences, that I realised why. As soon as I’m on the slip road for the motorway I would always feel panicked and my anxiety levels would skyrocket. It made no difference whether I was the driver or the passenger and I knew that it wasn’t due to the speeds or the traffic. What was actually causing my distress was the taking away of my escape routes and therefore my control of the situation. I knew that if, for any reason, I felt anxious or distressed I was trapped, at least until the next junction. I couldn’t escape and this only heightened the anxiety. If I was on any other type of road, I knew that at any time I could simply pull over and get out of the car. I could go for a walk or stretch my legs, whatever I needed to do. However, I never had to do this on any other type of road, simply because I had my escape route and therefore felt more in control. It was enough just knowing that I had the option, that I never feel overwhelmed enough to use it. Escape routes can help in so many different aspects of our lives as they help us with that feeling of being in control.

Let’s look at another scenario. Assuming you’ve disclosed that you’re autistic and are open about being autistic, let’s imagine you’ve been invited to  a wedding. For many of us, that could fill us with dread. Not only is there the social aspect to think about but also the sensory input and the fatigue we’re highly likely to experience for some time following the event. You may not want to decline the invitation as it’s somebody you’re close to so a good option would be to start planning your escape routes. You could have a conversation with the person who invited you, thanking them for the invitation but explaining that you may need at times to leave for a while if it becomes too much to cope with. You can explain that if they notice you leaving to realise that you’re okay and just taking some time out to reregulate. The vast majority of people will be very understanding and appreciate you explaining. This then gives you your escape route. You now know that at any time, you can simply leave until you feel able to return, without the need to feel embarrassed or hoping that nobody notices. Having your escape route also lessons the chances of having to leave – it’s sometimes enough just knowing you can. You may be thinking that in your circumstances, the other person has no knowledge of autism and you’re worried they’ll just think you’re being difficult. If that applies to you, then you can try this. When having the discussion with them, every time you would say “I”, simply change it to “autistic people”. Instead of the conversation perhaps being something like “I struggle with social settings and I may need to leave at times for a while” it will instead be “many autistic people struggle with social settings and may need to leave at times for a while”. By making this simple change, the other person is far more likely to understand that this is a difficulty for many autistic people rather than think it’s a difficulty unique to you.

 

If you have an autistic family member, friend or colleague, try to keep in mind the reasons why many of us need to feel in control of everything. We’re not trying to be controlling, we’re not becoming distressed at last minute changes to plans for no reason and we’re definitely not trying to be difficult. We’re simply trying our best to navigate a world that isn’t designed for us.