Right to Choose for Neurodevelopmental Assessments (ADHD & Autism)
In 2018 the government launched an initiative to help reduce waiting times for mental health services including ADHD and autism assessments.
This initiative is known as ‘Right to Choose’ and it gives patients the right to choose which provider carries out their assessment. This legal right applies to adults and children that are registered with a GP in England.
Right to Choose (RTC) for mental health services is still not very well understood amongst GPs and other healthcare professionals and as a result patients are continually being held back from accessing timely assessments and the support they desperately need.
Right to Choose is still an NHS referral but it uses private providers that hold an NHS standard contract with at least one Integrated Care Board (ICB) in England. It does not matter which ICB holds the contract, it does not have to be in your area.
These providers are contracted to carry out assessments for autism and ADHD following NICE guidelines. This means there is no cost to the individual as it is still NHS funded.
For ADHD, if medication is advised, titration (the process of starting ADHD medication, with regular follow-ups until optimal dose is reached) would be initiated and carried by the provider that conducted the assessment, this means that all prescriptions would be charged at the current NHS fee, and if you are exempt you would not pay for your ADHD medication either.
If you would like to exercise your right to choose for yourself or for your child these are the steps that you need to follow:
- Research different providers, and find one that suits your individual needs.
Different providers offer different services, some will only carry out remote assessments (over Zoom/Teams), others will offer remote and in-person assessments.
It is important to consider what you think will work best for you/your child.
- Look into their referral process.
Some will require forms to be filled in by the patient which then need to be handed over to the GP prior to the referral being sent, others will simply need the GP to fill out an online form.
Each provider will have their own process which should be clearly outlined on their website.
- Make an appointment to discuss with your GP why you are seeking an assessment.
As part of the Patient Choice Guidance, your GP should explain what choices you have, if they agree that a referral is clinically appropriate. Many GPs, unfortunately, do not do this and will suggest referring you/your child to the local NHS Developmental Assessment Pathway – these will often have incredibly long waiting lists (up to 10 years in some areas of England) but can vary depending on what area you are in.
If your GP does not offer you a choice of where your referral goes, it is your legal right to request it be sent to your chosen provider.
It can save time if you take any completed forms with you to your appointment as your GP may agree to send your referral straight away.
It can also help to take a list of symptoms/traits and reasons why you are seeking an assessment to help support your request. Some GPs will request this before agreeing to make the referral.
- Check your referral has been sent!
GPs may take time to process referrals, so it’s worth following up to confirm it’s been sent, especially if you do not get a confirmation from your chosen provider.
Some providers will confirm that the referral has been received, but some do not.
It is also worth checking that your referral has, in fact, been sent to the right place. It is not uncommon for GPs to agree to send it to your chosen provider and instead send it to the local NHS pathway!
Check, and double check!
- Sit back and try not to overthink what happens next!
A list of current RTC providers (ADHD/ASC) can be found here along with lots of other useful information including a template letter for GPs that may have initially declined a referral –
This list is broken into sections –
- Adult ADHD Wait Times
- Child ADHD Wait Times
- Adult Autism Wait Times
- Child Autism Wait Times
- Local Restrictions to Right to Choose
Each provider will have their current wait times listed but it is advisable to check directly with each individual provider as this list is sometimes not updated.
Current waiting times can sometimes be found on the provider’s website, others you will need to call/email, or, if available you can use their online chat.
Most providers only carry out remote assessments, which became standard during the pandemic.
These online assessments are recognised by NICE to be just as robust as in-person assessments but if face-to-face is preferred there are some providers that offer this. Unfortunately it may mean having to travel in order to achieve this.
Some providers operate a secondary queue to access medication for ADHD. This means you will be added to another waiting list following the diagnosis due to there being a backlog of patients to work through, so it is important to consider the overall waiting time if medication is a high priority.
Another important thing to consider is how titration is carried out.
Generally, titration will be carried out over several months, and for as long as it takes for each individual to find their correct dose. The average tends to be around 3 months but it can take longer if different medications need to be trialled.
Some providers are restricted in how many appointments they can offer, or how long titration can last. It is worth contacting your chosen provider prior to being referred to guarantee they can meet yours, or your child’s needs.
Once you have reached your optimal dose, your titration period will come to an end.
At this point, your provider will contact your GP regarding “Shared Care”.
A ‘Shared Care Agreement’ (SCA) simply means that your chosen provider and your GP will share your care going forward, the GP will take over issuing your monthly prescriptions, and any reviews (6 monthly for children, yearly for adults) will be carried out by your provider.
Many GP surgeries are currently refusing to take on shared care as they feel it falls outside of their remit and adds extra work for them.
It is probably worth contacting your surgery, or speaking directly to your GP to find out where they stand in regards to accepting shared care – some surgeries have a strict policy and will refuse all shared care requests, others will depend on the individual GPs, if your own GP refuses, you can ask if any other GPs at your surgery will agree to it.
It is also worth considering that GPs can also withdraw previously agreed SCA at any time, just because they initially accept does not mean they have to continue in the future.
Most providers will, as part of their NHS contract, be able to continue issuing prescriptions if shared care is refused but it is worth checking with your chosen provider first as not all of them are contracted to provide this service.
For help and support before, during and after the process, please check out these two very helpful Facebook groups.
They were invaluable to me when I was trying to navigate this whole confusing process for myself and for my children.
They are run by a very knowledgeable group of people who understand how RTC should work.
There are many members who are going through exactly the same as you are right now and they can be a great source of helpful advice, support when things get hard, and a listening ear when you just need to vent!
I am already on the local pathway, can I switch to RTC?
Yes! The NHS Choice Framework outlines your options for changing providers.
“You can ask to be referred to a different provider of NHS services if:
you have to wait, or have already waited, more than 18 weeks before starting treatment or assessment for a physical or mental health condition, as long as your referral is not urgent and the service you require is led by a consultant.
Waiting times can vary between services and you have the right to ask to be referred to another provider that may be able to start your treatment sooner.”
What to do if your GP refuses or doesn’t understand Right to Choose:
If your GP doesn’t understand the process or states that RTC is not available, it can be helpful to point them in the direction of the Patient Choice Guidance. (Sections “For Commissioners” and “For Primary Care Referrers”).
This states that it is a legal right for patients (of all ages) in England to decide where their referral is sent, and that you can choose any provider that holds an NHS contract for the required service in any area in England.
“For mental health referrals, where a patient requires an elective referral, for a first outpatient appointment including any subsequent treatment if required, with a consultant or a health care professional or their team, the patient can choose:
- Any clinically appropriate provider that holds a qualifying NHS Standard Contract with any ICB or NHS England, for the service which the patient needs as a result of the referral
- Any clinically appropriate team led by a named consultant or health care professional that is employed or engaged by that provider.
Elective referrals, to which the rights to choice of provider and teams apply, are those made by a GP.”
It can be helpful to raise your concerns with the practice manager if your GP continues to refuse as they often have a better idea of policies and procedures.
What if my GP insists on using certain providers?
NHS England has requested that GPs shortlist, on average, 5 providers for patients to choose from.
This does not mean you are restricted to choose from this list.
It is your choice, and your legal right to choose the provider that best matches your needs.
As mentioned above, the Patient Choice Guidance states that patients in England can choose any provider that holds a contract.
What if the GP says that the referral must be sent by the school?
RTC referrals for under 18’s are frequently refused, with parents being told that paediatric referrals must be made by the school. This is incorrect.
Schools can only refer to the local service. If you’re requesting to be referred to a right to choose provider then you’re not asking to be referred to the local service.
You’re exercising your legal right to choice as per the NHS Choice Framework and these providers require the referral to come from the GP.
Again, contacting the practice manager of your surgery can be helpful.
If your GP surgery still refuses, the next step is to contact your local ICB (Integrated Care Board).
“ICBs have a duty to ensure patients can exercise their legal rights to a choice of healthcare provider. They also have a responsibility to provide information on the choices available to patients in the NHS.”
To find your local ICB, click here.
You can also contact NHS England if you feel that your ICB is not taking your complaint seriously.
To contact NHS England via email england.choice@nhs.net
“NHS England has oversight responsibilities to make sure that providers and local health organisations offer patients the choices they’re entitled to. NHS England is also responsible for responding to and investigating complaints about patient choice, whether you’ve already contacted your ICB or not.”
NHS England’s New Commissioning Rules
Before looking at possible reasons why you may not have a legal Right to Choose, it’s important to understand one additional factor that can affect which providers are available to you.
NHS England has introduced something called Indicative Activity Plans (IAPs). These plans place a limit on the amount of funding allocated to each provider for Right to Choose autism and ADHD assessments.
IAPs do not change your legal Right to Choose, but they can restrict which providers are available at any given time.
Integrated Care Boards (ICBs) have been instructed to use IAPs to manage how many Right to Choose assessments each provider is allowed to carry out within their area.
Each ICB reviews its budget and decides:
– how many assessments it can afford to fund overall, and
– how many of those assessments will be allocated to each provider.
Once a provider reaches its allocated number of assessments for that financial year within an ICB’s area, the ICB can refuse to fund any further referrals to that provider until the next financial year begins.
This system was introduced because:
– referrals for autism and ADHD assessments have increased significantly across England, and
– more people are becoming aware of their legal Right to Choose and the shorter waiting times available through this pathway.
The rise in demand has placed pressure on ICB budgets, and IAPs were introduced to help ICBs manage these costs more predictably.
Many providers still have the clinical capacity to assess and treat patients, but they cannot continue accepting referrals if the ICB has not agreed to fund additional activity.
As a result, patients seeking a Right to Choose referral may find that fewer providers are available to them, effectively limiting the choices that the law is meant to guarantee.
What This Means For You
After your referral is sent and accepted by your chosen provider, you will be placed on that provider’s waiting list.
If the provider later reaches its allocated limit under the Indicative Activity Plan (IAP), they must place their list on hold. This means they cannot accept any new referrals or carry out any further assessments.
This pause does not affect people who already have a confirmed appointment date for their assessment or titration.
The waiting list will not reopen until the start of the new financial year, when the provider’s allocation is reset.
Unfortunately, there is no way to know your exact position on the waiting list or whether you will be assessed before the provider reaches its cap again.
At present, there is no central place to check which providers or ICB areas have been paused. The most reliable source of information is usually the provider’s own website, as they should publish updates about which ICBs they are currently able to accept referrals from.
There is a significant lack of transparency around IAPs, and in many cases the only way to obtain clear information is by submitting a Freedom of Information (FOI) request to your local ICB.
If your chosen provider has been paused, you can return to your GP and ask for your referral to be redirected to a different provider. You would be added to the bottom of that provider’s waiting list, and unfortunately there is no guarantee that the same issue won’t occur again.
When you may not have a choice:
There are some exclusions that can prevent you from accessing RTC, these are outlined below.
You do not have a legal right to choose where your outpatient appointment will take place if you are:
- already receiving care and treatment for the condition for which you’re being referred and this is an onward referral
- using urgent, emergency or crisis services
- in need of emergency or urgent treatment, such as cancer services where you have received an urgent referral for suspected cancer or for breast symptoms (where cancer is not suspected)
- a prisoner, on temporary release from prison, or detained in ‘other prescribed accommodation’ (such as a court, secure children’s home, secure training centre, an immigration removal centre or a young offender’s institution)
- someone who is held in a hospital setting under the Mental Health Act 1983
- a serving member of the armed forces
- using maternity services (see section 5, ‘Choosing maternity services’, for more detail)
