Right to Choose – assessment and/or diagnosis

Despite often hearing from parents about the demand on them to get a written report stating a diagnosis, in England our legal system does not require a child or young person to have a formal diagnosis in order to receive support in school. Support should be available based on the child’s needs. The relevant issue is the difficulties and challenges a child faces, which do not change if and when a diagnosis is given. (Acknowledgement to IPSEA).

However, there may be times when you feel that an assessment to obtain a diagnosis is required for your child or young person, especially if Autism or ADHD is suspected. This may be because medication could be required, or because certain services cannot be accessed without one.

Waiting lists for assessment and diagnosis in some Health Service providers such as CAMHS (Child and Adolescent Mental Health Services) are growing longer with each passing year and parents are often having to wait years for some assessments and diagnosis.

Where there are long waiting lists, you may have heard about your ‘Right To Choose’. Although this may be well known for physical health needs when requiring an operation in hospital for example, there is some confusion about this pathway for such diagnoses as Autism and ADHD, and especially where medication may be required.

So let’s try and unpick the current situation.

Your legal right to choice in general

According to the NHS, if your GP needs to refer you for a physical or mental health condition, in most cases you have a legal right to choose which hospital or service you go to in England. This includes NHS and many private hospitals that provide services to the NHS. You may also choose your clinical team led by a consultant or named healthcare professional.

You have the legal right to choose which service provider and clinical team you’re referred to for your first appointment. The NHS works with various organisations to run mental health services across England. They might be charities, private companies or not-for-profit organisations. These are called service providers. Find out more about choosing a mental health service.

You do not have a legal right to choose if:

you need urgent or emergency treatment
you already receive care and treatment for the condition
the organisation or clinical team you’ve chosen does not provide the right care for your condition
you’re a prisoner or on temporary release from prison
you’re detained in prescribed accommodation, such as a court, secure children’s home, secure training centre, immigration removal centre or young offender institution
you’re detained in a secure hospital setting
you’re a serving member of the armed forces
you’re detained under the Mental Health Act 1983

How can I book an Appointment using the ‘Right To Choose’

You can book your appointment via the NHS e-Referral service. It can be done while you’re at the GP surgery, or online, using the shortlist of hospitals or services provided in your appointment request letter. The shortlist is selected by your GP, so make sure you tell them about your preferences during the appointment.

How do I choose the service provider?

In general the GP will have a list of service providers they can refer to under the ‘Right To Choose’. It will be particularly important if there is likely to be ongoing treatment and medication that the GP and service provider have what is called a ‘Shared Care Agreement‘. This allows medication and other treatments to carry on after your chosen provider discharges your child/young person. The GP does need to agree to this.

Some service providers state that their Autism / ADHD diagnosis counts as an NHS diagnosis and may even have the NHS logo on their diagnostic report.

In terms of ADHD, this would be particularly important to check with your GP as for legal reasons regarding duty of care for prescribing, it is generally the psychology service (such as CAMHS) not the GP that prescribes and maintains medications. See below for more information about this.

Private Assessments

There are many private organisations who are offering assessments for ADHD and ASC. The assessments vary in approaches and quality. It is important to choose a private company which has registered practitioners who are able to perform a robust assessment. Whilst CAMHS are unable to recommend private assessors, they do provide NICE guidelines (which should be used by any private assessor):

Attention deficit hyperactivity disorder: diagnosis and management (specifically section 1.3)
Autism spectrum disorder in under 19s: recognition, referral and diagnosis (specifically section 1.5)

What if my child is already on the CAMHS Neurodevelopment Service waiting list?

If you were on the waiting list with the CAMHS Neurodevelopment Service but have gone down the route of having a private report with a diagnosis then what happens next will depend on what the outcome of the assessment is and what recommendations for next steps are.

If a young person receives a diagnosis of autism please let the CAMHS Neurodevelopmental Service know and they will remove the young person from their waiting list. They will give you information about local support and resources available. They will not need to re-assess or rubber stamp a diagnosis of autism made by an external provider.
If a young person receives a diagnosis of ADHD and is not requiring medicating please let the CAMHS Neurodevelopmental Service know and they will remove them from the waiting list.
If the private provider has made a diagnosis of ADHD and is recommending medication or has initiated medication then the CAMHS Neurodevelopmental Service will need to review the information which has been shared with them to see if they meet with their internal minimum clinical standards. This is for legal reasons regarding duty of care for prescribing. They may need to gather more information and meet with the young person to assess if their current presentation warrants medication. On occasions they may conclude that they do not meet criteria for ADHD and/or medication. If this is the outcome they will explain to you how they have reached this conclusion.

To contact CAMHS Neurodevelopmental Pathway you can call them on Telephone: 0300 304 0229 or email: ndp.westsussex@spft.nhs.uk

Is Right to Choose appropriate for me?

When considering whether to choose the ‘Right to Choose’ route, you may find the following helpful:

If you are seeking just an assessment and diagnosis then the ‘Right To Choose’ route may be beneficial in obtaining a ‘speedier’ appointment. As long as the Service provider is recognised by the NHS (which it should be if referred to by the GP), then the report should be accepted by all those that would need to refer to it.

For ADHD specifically, or when seeking a diagnosis that may require ongoing therapy, medication or reviews, you would need to find out not only if the report would be accepted but who would be delivering the care needed (i.e. medications), after the initial diagnosis AND whether there might be a cost to yourself in having this. You would not want to have the diagnosis and then find out you either have to pay for continued medication or go back to the start of the waiting list if you could not afford to continue. A Shared Care Agreement would need to be agreed.

What can I do if I’m not offered a choice?

You should always be offered a choice at the point of referral and an opportunity to discuss the options with the person referring you. If you feel you have not been offered a choice, you should speak to the person who is referring you in the first instance.

If you still feel that you have not been offered a choice, you could complain to your ICB as they must ensure patients are given choices. Find out more about your local ICB.

If your local ICB is unable to resolve the complaint to your satisfaction, you’re entitled to take your complaint to the independent Parliamentary and Health Service Ombudsman.

Find out more about feedback and complaints about NHS services on the NHS England website. You will also find guidance in section 13 of the NHS Choice Framework.