Frequently Asked Questions
In this section:
Referral processes and pathways
Services
Waiting times
Assessments
Medication
Right to Choose
Referral processes and pathways
How can I get Referred and do you accept self-referrals?
NeSS accepts referrals from General Practitioners (GPs) and Nottinghamshire Healthcare NHS Trust clinicians (e.g. psychiatrists, nurses, psychologists, occupational therapists etc). We do not accept self-referrals.
The clinician will talk to you about why you feel you have autism and/or ADHD, or what support you are seeking if already diagnosed. If they feel NeSS is the right service to support you, they will complete Part A of the referral form and give you Part B to fill in. Please provide as much information as you can about why you feel you have autism and/or ADHD both now as an adult and when you were a child (before 12 years). Please make sure you have answered all the questionnaires that are included with the Referral Form as we are unable to accept the referral if these are not completed and returned.
Why was my assessment referral declined?
All referrals are screened by the clinical team. Due to the very high number of referrals we receive there may be a delay in this process. We will contact you and the referrer to let you know whether we have accepted your referral.
Sometimes referrals to NeSS are not accepted. Some common reasons for this include:
- The information provided does not suggest that a neurodevelopmental condition is likely.
- Not enough information about autism/ADHD characteristics have been provided (particularly before 12 years of age).
- Lots of information has been provided about mental health problems (such as anxiety or low mood) but not enough examples of the neurodevelopmental characteristics themselves. We recognise that neurodivergent people are more likely to experience mental health problems but, as these can have multiple possible causes, it is important to focus on the possible neurodevelopmental issues themselves in the referral.
- Part B of the referral has been filled in by someone other than you (often a parent or a mental health professional) and they have not made it clear that you yourself want to be assessed. If you are completing it on behalf of the client, it is helpful to say this and to explain why.
What happens if I move out of area while on the NeSS waiting list?
We are unfortunately not able to keep anyone on the waiting list if they no longer have a Nottingham or Nottinghamshire GP. If you are moving out of area temporarily (such as for university), we will be unable to keep you on the waiting list if you are no longer registered with a Nottingham or Nottinghamshire GP.
We are also unable to accept direct transfers from other autism/ADHD NHS waiting lists in other areas of the UK. Different services have different criteria, and being accepted onto a waiting list in one area does not automatically mean that we would accept the referral. If you have recently moved into the area and had a previous referral to a different service, you will still need to see your Nottingham/Nottinghamshire GP to refer you to NeSS.
Unfortunately, this will mean starting the referral process again; we are unable to keep your place from any previous waiting list.
Can my appointment be sooner (known as an 'expedited referral')?
We know it can be difficult waiting for an appointment for either diagnostic assessment or treatment. We are doing everything we can to bring our waiting list down.
At the moment we offer appointments from the date of referral, and do not normally accept requests to expedite referrals. We feel this is fairest to those on our waiting list.
We encourage you to consider additional support you can access whilst waiting if you feel you need it.
GPs can write to NeSS to ask us to expedite assessments, outlining in detail why you need to be seen more quickly and how the assessment will resolve the current problem and we will consider these requests on an individual basis. However, as stated above, we do not typically accept these requests. Requests based around support needs or mental health difficulties are not normally accepted, as support should be available regardless of diagnosis.
Support from universities or workplaces should be based on needs rather than diagnosis, so please approach your student support services or employer and ask what support they can offer. This website explains that formal diagnosis is not required for reasonable adjustments to be considered: Adjustments for neurodiversity - Reasonable adjustments at work - Acas
This is also true of social care, which should be based on needs and not diagnosis. Adult social care assessments can be accessed through self-referral here:
- Nottingham City residents: Adult Social Care - Nottingham City Council
- Nottinghamshire County residents: Adult social care | Nottinghamshire County Council
For mental health support (with or without an autism or ADHD diagnosis) please speak to your GP, who will be able to direct you to the appropriate type of mental health service for your needs. NeSS is primarily a diagnostic assessment service and so we cannot offer mental health treatment, even when someone is diagnosed with ADHD or autism.
If you feel you need mental health support urgently, please go to your local A&E or call the Trust 24-hour Clinical Access Line (0808 196 3779)
Services
What services are available after diagnosis?
NeSS is primarily a diagnostic assessment service which also offers ADHD medication treatment and some time-limited post diagnostic support. This post diagnostic support is usually offered through two courses at the Nottingham Recovery College . These are called Living Well with Autism and Living Well with ADHD. They are 6-week small-group courses to support people to better understand their neurodiversity and develop new self-management strategies.
NeSS also offers some time-limited assessment and advice from clinical psychology, speech and language therapy and occupational therapy for specific difficulties related to the neurodevelopmental condition. This will be discussed during your assessment and any post diagnostic support needs can be agreed during your diagnostic feedback.
If you have an existing diagnosis of autism and/or ADHD, we can consider referrals for the Living Well courses (please ask your GP to refer you to NeSS for this course). To support this we will need to see written evidence of your diagnosis (a diagnostic report) for us to review.
Does NeSS offer neurodevelopmental coaching?
NeSS does not offer this. Coaching is a rapidly growing industry and is
not widely available on the NHS. If you decide to seek coaching from a private provider, please do check their qualifications and experience as it is currently an unregulated area.
What support can I get before or after diagnosis?
For advice about support available before and after diagnosis, you may find the Mind of All Kinds Notts website a useful resource: (Link to Minds of All Kinds)
Waiting times
Why is the wait so long?
Waiting times for autism and/or ADHD assessment are currently very long, for adults and children, across the UK. At NeSS, we are very aware of how difficult it is for people to wait for years for these assessments, and we would also like the waiting times to be much shorter.
Some of the reasons for this include:
- Rapid increase in awareness of neurodevelopmental conditions has meant that many more people than ever before have been recognising the characteristics in themselves or their loved ones.
- At the same time, there has been an increase in understanding the impact of living with undiagnosed neurodevelopmental conditions.
- This has led to a very significant growth in the number of assessment referrals, across the country. At NeSS, for example, we receive around 300 referrals every month, many more than were anticipated. We are a small clinical team and the demand is much higher than our capacity.
- Neurodevelopmental assessments are complex and detailed and when they are done carefully and in line with national guidelines, they can take a long time.
- Waiting times for ADHD medication are also affected by these issues, as well as problems with global supply.
These issues are repeated across the country and the Government and NHS have been reviewing potential solutions to increase access to neurodevelopmental focussed care.
We know that this information does not make it easier to wait but please be assured that we understand how difficult this can be and that we want to see you as soon as we possibly can.
Why have I had a phone call to check if I should be on the waiting list?
NeSS contacts people on the waiting list regularly to make sure that everyone who is on the list still wants to be seen. This helps us make sure we are offering appointments to people who still need them. Getting one of these calls does not necessarily mean you are near the top of the waiting list as we aim to contact everybody.
Does getting an invitation to sign up for Patient Knows Best mean I'm near the top of the list?
NeSS are collaborating with Patients Know Best to improve communication with our patients. Patients Know Best is a digital platform that you can access through the NHS APP. You will be able to access our Waiting Well resources in the library and we will periodically send out a questionnaire to ensure you are still eligible to be on the waiting list. We hope this will improve patient experience and reduce waiting times by improving efficiency in the service. The invitation you have received is legitimate and we encourage you to sign up, if you are willing. If you choose not to sign up, this will not affect your place on the waiting list. There is additional information on the Trust website about this service: Patients Know Best
Everyone on the waiting list will receive an invitation to sign up for this, so unfortunately it does not necessarily mean that you are near the top of the list.
Assessments
What will happen during my assessment appointment?
Medication
Please note that all questions about ADHD medication should be discussed with your prescriber. This might be your specialist prescriber from NeSS or, if you are on Shared Care, this will be your GP.
Can you prescribe anything for sleep?
The prescribing team at NeSS is only able to offer medication for ADHD. While we recognise that many people with autism and/or ADHD have sleep problems, we are unable to prescribe medications for this. Please discuss this with your GP.
Right to Choose
Can you recommend specific Right to Choose or private providers for assessments?
The NHS Right to Choose is a system that allows patients to choose a provider for their healthcare if certain conditions apply. There are private providers who get paid by the NHS to do autism and ADHD assessments and people sometimes choose this option when the waiting times are shorter. Your GP will be able to discuss this option with you. For more information about Right to Choose please see:
NeSS is not able to recommend specific providers.
Right to Choose assessments are funded by the NHS, but they are all independent (private) companies who have their own assessment pathways and procedures. It is important to check that the provider you choose will follow assessment standards. If it does not, this may lead to your assessment not being accepted in NHS services.
It is also important to understand that you cannot be on both the Right to Choose and NeSS waiting lists at the same time.
Why has my Right to Choose diagnostic report not been accepted?
Right to Choose providers are all independent companies, who do not necessarily follow the same assessment processes as NeSS.
NeSS has a set of assessment standards that are based on NICE guidelines and the UKAAN AQAS standards. These standards have been developed to help maintain quality and make sure people get the right outcome from their assessment.
We review all diagnostic reports (including our own) against these standards and, unfortunately, sometimes we have to decline the report as the assessment does not appear to have met the quality standards. This does not necessarily mean that it is the wrong diagnosis. However, we need to ensure that the diagnosis has been fully explored, along with any other factors that could be contributing to the difficulties you describe (such as related to your mental or physical health, or your life experiences). We will write to you and your GP to explain this and what needs to happen next.
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