Attention Deficit Hyperactivity Disorder (ADHD) and Autism

Yes. New referrals are open.

GPs can refer people for autism and or ADHD assessments. Providers are accepting referrals, but demand remains high and waiting times are long.

NHS North East and North Cumbria Integrated Care Board (ICB) is responsible for planning and funding NHS autism and ADHD services across the region. 

We know people are waiting too long. We continue to invest in services and work with providers to increase assessment capacity and improve access.

This includes:

·       funding more autism and ADHD assessments than ever before

·       supporting more people to start NHS-funded prescribed medication for ADHD

·       working with over 25 NHS, Right to Choose and North East and North Cumbria accredited providers

·       working towards fairer and more consistent waiting times across providers

·       expanding online support information and self-management resources, and local support signposting on the ICB website

We continue to monitor services to make sure people receive safe, high quality care.

Waiting times are long as there is currently still a much higher demand for autism and ADHD assessments than services can provide. 

We know waiting times in our region, like the rest of the country, are too long. We are working towards fairer and more consistent waiting times across all providers.

You do not always need a diagnosis to access help and support. Please see the help and support section for more information.

Autism and ADHD assessment services are not covered by NHS Referral to Treatment (RTT) rules in the same way as many hospital treatments.

This is because autism and ADHD services mainly provide assessments and diagnosis, rather than a consultant-led hospital treatment, which is covered by NHS Referral to Treatment standards.

Waiting times are now the same across all Right to Choose providers and North East and North Cumbria ICB accredited providers, so choosing a different provider does not mean you will be seen sooner.

Your GP will discuss your options with you and, where appropriate, make a referral that is clinically appropriate and follows NHS Right to Choose guidance.

You should only be on one autism and ADHD assessment waiting list at a time.

If you have:

• Already been assessed by one provider, or
• Been referred to more than one provider

Please let the other provider or NHS trust know so that you can be removed from their waiting list. This helps services manage demand and ensures appointments are offered fairly.

For some people, getting a better understanding of certain behaviours and personality traits can be powerful. Self – understanding tools can be a good way to learn more about yourself in relation to traits and behaviours without the need for a formal diagnosis of ADHD and or Autism.

We have used the word' tool 'to mean a few different things such as tests, questionaries and online resources.

There are lots of free online tools that might help you see if you have some traits of autism or ADHD. But be cautious– some of these can be unhelpful and or unclear.

The tools listed here are trusted, free and widely used. They have evidence behind them and may help you understand yourself and offer some insights.

Tools that are available for children and young people are best used for ages 6-17, and for Adults we mean ages 18 or over.

Remember:

• No online test can give you a diagnosis.
• These tools are just to support you to understand you better.
• They can help you decide whether to get more support or advice.

Autism Self-understanding: For Children and Young People

Trusted tool: Children’s Empathy Quotient (Ages 4-11) and Empathy Quotient for Adolescents (Ages 12-15)

Details:
These are a group of short surveys for parent or carers. They can help parents or carers learn how their child thinks about and reacts to other people’s feelings. They include real-life examples where understanding others’ emotions (empathy) is important.

Good things about it:
- Helps parents or carers understand a child’s strengths and challenges in social situations. 
- Shows how children and young people think about emotions and relationships.
- Uses age-appropriate questions for clearer results.

Things to keep in mind:
- Some children learn what is expected in public. This might make them seem more empathetic than they really are which can affect the results.
- Results are based on parent or carer answers. Responses may be influenced by memory or opinion.
- This tool is for self-understanding only. The tool does not diagnose autism.

Links to the tools:
Children’s Empathy Quotient (EQ-C) – Ages 4–11

Empathy Quotient for Adolescents – Ages 12–15

ADHD Self-understanding: For Children and Young People

Trusted tool: Cambridge Neuropsychological Test Automated Battery (CANTAB)

Details:
The CANTAB test is a set of short, computer games. They check how well someone can remember things, focus, and control their actions. It is sometimes used to learn more about thinking skills linked to ADHD.

Good things about it
- Easy to do – you do not need any medical machines or special tools.
- Gives clear results about how you pay attention and think.
- Shows patterns in how your brain works and how you understand information.

Things to keep in mind:
- Being tired, worried, or not being used to computers can change the results.
- This tool is for self-understanding only. The tool does not diagnose ADHD.

Top tips
- It works best in a quiet, tidy place with no distractions.
- A touchscreen device, like an iPad, gives the best results.
- The test is better for teenagers than for younger children.

Link to the tool:
Cambridge Neuropsychological Test Automated Battery (CANTAB)

Autism Self-understanding: For Adults

Trusted tool: Autism Spectrum Quotient (AQ-50)

Details:
This is a test to see if people have traits that might be linked to autism. It looks at:
- Personality traits
- Ways of communicating
- Attention patterns

Good things about it:
- It looks at lots of things. This includes social skills, communication, and attention to detail. 
- Gives a clear picture of traits linked to autism, not just a single score.

Things to keep in mind:
- There is more than one way to score the AQ-50, so a high or low score does not always point to the same result which can be confusing.
- People who mask or hide their traits well may score lower.
- Some questions may be less relatable for women.
- This tool is for self-understanding only. It does not diagnose autism.

Top tips:
AQ-50 works better for women when used with other tools such as the CAT-Q to understand masking behaviours or the EQ-40 to understand empathy responses.

Link to the tool:
Autism Spectrum Quotient (AQ-50)

Trusted tool: Camouflaging Autistic Traits Questionnaire (CAT-Q)

Details:
The CAT-Q test can help people understand their traits and or behaviours in social situations, known as 'masking'. It looks at:

- How people copy others
- How people try to fit in
- How people use certain habits

These are things people might do to feel more comfortable around others.

Good things about it:
- Helps people understand their own habits for coping mechanisms.
- Shows the different ways people mask, like copying others or hiding their feelings.

Things to keep in mind:
- People without autism can also mask in everyday situations. Masking can be a positive and helpful trait.
- The results depend on how well someone knows their own behaviour.
- This tool is for self-understanding only. It does not diagnose autism.

Top tips:
It works best when used with AQ-50 Autism Spectrum Quotient (AQ-50) as they look at different things and can be more helpful when used together to give better understanding.

Link to the tool:
Camouflaging Autistic Traits Questionnaire (CAT-Q)

Trusted tool: Empathy Quotient (EQ-40)

Details:
The EQ test helps people understand how easily they notice and respond to other people’s feelings. It is like other empathy checks, such as the EQ-C and EQ for Adolescents.

Good things about it:
- Helps people learn more about their own empathy style.
- Helps people learn how aware they are of the emotions of others.
- Gives a better understanding of social awareness and how someone relates to others.

Things to keep in mind:
- Cultural differences can change how people answer empathy-based questions.
- Having low empathy does not mean someone is autistic.
- This tool is for self-understanding only. It does not diagnose autism.

Top tips:
This test should be used in addition to the AQ-50 Autism Spectrum Quotient (AQ-50)  as they look at different things and can be more helpful when used together to give better understanding.

Link to the tool:
Empathy Quotient (EQ)

Trusted resource: Embrace Autism

Details:
Embrace Autism is a website created by autistic people and experts. It includes quizzes, articles, and stories. This can help people learn more about autism. For lots of people, hearing other's stories can be helpful.

Good things about it:
- The website is friendly and easy to use.
- It offers trusted information and resources to help with self-understanding.

Things to keep in mind:
- It is not a diagnosis tool. It is a website with resources to help with self-understanding.

Link to the website:
Embrace Autism

Trusted tool: The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R)

Details:
The RAADS-R is a longer survey for adults. It looks at social, sensory, and emotional traits linked to autism.

Good things about it:
- It is well-tested and used a lot. 
- It sees that traits and behaviours linked with autism can look different in men and women.

Things to keep in mind:
- Some questions can be confusing.
- Some traits in the test can also be found in other conditions, like alexithymia (finding it hard to recognise emotions).
- This tool is for self-understanding only. It does not diagnose autism.

Link to the tool:
The Ritvo Autism Asperger Diagnostic Scale–Revised (RAADS-R)

ADHD Self-understanding: For Adults

Trusted tool: Adult ADHD Self Report Scales (ASRS)

Details:
The ASRS is a short set of questions for adults. It helps check for signs of ADHD, such as:

- Trouble focusing
- Restlessness
- Being forgetful

Good things about it:
- Quick and easy to fill in.
- It is used a lot.

Things to keep in mind:
- It may not show the full picture for people who hide or mask their symptoms well.
- There are two ways to score this test, and professionals may use different methods, so different scores could mean different things.
- This tool is for self-understanding only. It does not diagnose ADHD.

Link to the tool:
Adult ADHD Self Report Scales (ASRS)

Trusted tool: Cambridge Neuropsychological Test Automated Battery (CANTAB) for ADHD

Details:
This is a test that uses simple tasks to check memory, attention, and reaction speed; differences in these skills that are often linked to ADHD.

Good things about it:
- Gives clear and accurate results.
- Helps show thinking patterns that may be linked to behaviours and traits sometimes associated with ADHD.

Things to keep in mind:
- Doing the test more than once can change the results.
- This tool is for self-understanding only. It does not diagnose ADHD.

Top tips:
- Works best in a quiet place with no distractions.
- A touchscreen device, like an iPad, gives the best results.

Link to the test:
CANTAB for ADHD

ADHD medication can only be prescribed by a specialist; GPs are not currently able to prescribe ADHD medication in England.

Shared care is a formal local agreement that enables GPs to accept responsibility for the safe prescribing and monitoring of specialist medicines.

*Guidance issued by the General Medical Council (GMC) states the GP is not obliged to enter into a shared care arrangement with any provider, and GP practices can decline shared care requests on clinical and capacity grounds.

If you are recommended ADHD medication after your assessment, how you get that medication can vary.

It depends on how and where you had your assessment:

• If you had an NHS assessment (through CNTW or TEWV)
• If you were assessed through Right to Choose
• If you paid for a private assessment

Each of these options might have different rules about prescribing and getting medication. Your GP or care team can help explain what’s available in your situation.

In England if a GP refers an NHS patient to a specialist for a physical or mental health condition, in most cases patients have the legal right to choose the specialist hospital or service, including those for ADHD and Autism assessments.

The Right to Choose is based on a number of criteria which must be satisfied before your GP can make a referral. Referral to a right to choose provider can only be for a first appointment, you cannot have a second opinion or change provider once you have made a choice and had a first appointment.

If your GP supports a referral there are a number of Right to Choose providers offering ADHD & Autism services.

It is important to understand which Right to Choose provider is best for you as they do not all offer the same things as part of their NHS contract.

It can be quicker to get an assessment from a Right to Choose provider but not all Right to Choose providers are able to prescribe medication which may be needed after a confirmed ADHD diagnosis.

If there might be a need for medication (for ADHD) some Right to Choose providers are not able to prescribe ADHD medication and those that are, may require a shared care agreement (SCA) with your GP. 

Not all GPs in our area will enter into a share care agreement, this decision is at their discretion.

Many patients find that a diagnosis is sufficient for obtaining additional support from schools or employers, or they may not need medication at all for managing their condition.

Some patients are able to and choose to pay for medication with private prescriptions.

If you choose to self-refer to a private provider, the Right to Choose will not apply and the NHS will not pay for the assessment and or any recommended treatment.

A right to choose is not a right for a referral, referrals need to be clinically appropriate.

It is advisable to have a conversation with your GP to help understand if Right to Choose is right for you, and which provider can fully meet your needs.

Your GP will have an up to date list of all Right to Choose providers and what they are able to provide on behalf of the NHS.

Further resources:

ADHD & Right to Choose referrals: Visit the ADHD website for more information.

ASD & Right to Choose referrals: Visit the National Autistic Society website for helpful details.

NHS: How you can access NHS mental health services

Our goal is to help people with ADHD and/or autism get the support they need to live well and feel happy whether they have a formal diagnosis or not.

Everyone deserves the right help, and support should be based on what a person needs, not just on a diagnosis.

Our ambition across our region is to ensure that ‘needs led’ help and support is available whether there is a formal diagnosis of ADHD and or Autism, or not.  Having a person's needs met could include help to improve self-esteem and confidence, improve mental health, help with diet and nutritional advice, improve sleep or employment and or educational difficulties.

Further resources:

NHS Help and Support locally

• Support for neurodiverse children and young people
• Support for neurodiverse adults

ADHD & Autism

• ADHD in children and young people - NHS
• ADHD in adults - NHS
• Where to get autism support - NHS

Information on ADHD

• NHS Website

Information on ASD

• NHS Website

If you have a query, concern or complaint about autism and ADHD services which is not covered in the information on these pages email nencicb.complaints@nhs.net

If you wish to raise a complaint about a service you have received, in the first instance you should follow the services own complaints procedure.

It is important to note:

Raising a complaint with NHS North East and North Cumbria ICB (either directly or via your MP) will not 

• Reduce your (or someone you represent) wait time for a diagnostic assessment with any NHS provider including all Right to Choose providers
• Reduce your (or someone you represent) wait time for titration of ADHD medication with any NHS provider including all Right to Choose providers
• Enable you (or someone you represent) to access ongoing ADHD medication via the NHS if you have privately funded an assessment and started treatment
• Enforce a GP to enter into a shared care agreement

We recognise wait times are long and we are working hard, and investing in services, to reduce these. 

We recognise shared care can be an issue for some people, and in most cases this is not needed for ongoing NHS prescribing – if you receive medication from a specialist provider under the NHS, then ongoing prescribing responsibility remains with them.

If the nature of your complaint or query relates to information already available on this website, the complaints team will not provide a personalised response but will direct you to the information available on these web pages.

If you (or someone you represent) has had a change in circumstance you should communicate this with the specialist provider you are registered with, or your GP.

If you (or someone you represent) needs support while you wait for an assessment or ADHD treatment within the wait times you have been advised of, please contact your GP, call 111 or access support locally. 

There is information available on our webpages about local support for both children and young people and adults.