Understanding NHS Right To Choose and Patient Choice

***This section is in development. More information to be added soon***

There are many clinics across England offering NHS neurodevelopmental diagnostic assessments to children, young people and adults. These clinics all work within an NHS Standard Contract and to a strict NHS service specification. These clinics will not charge you for any NHS care or treatment you receive if you were referred by your General Practitioner (GP). You won't be asked to pay through a privately funded prescription for any medication prescribed (in the case of an ADHD diagnosis), just NHS prescription charges that you would normally pay.

You have probably heard of these clinics referred to as NHS Right To Choose clinics.

I've heard that the NHS won't accept a diagnosis from an NHS Right To Choose clinic - is that correct?

Your diagnosis is an NHS diagnosis. Right-to-Choose providers hold an NHS Standard Contract, the same legal contract as any NHS Trust. That means:

Your diagnosis and report are NHS documents, not “private reports.”
The NHS must treat them as valid unless there is a proven clinical safety concern (for example, clear evidence the assessment was fraudulent or incomplete).
Local NHS services cannot lawfully dismiss or downgrade a valid NHS diagnosis simply because it was done elsewhere or with different paperwork.

How can I find out which clinics are approved NHS Right To Choose clinics and which will charge me as a "private patient"?

The easiest way to do this is to check the website of the national charity, ADHD UK. www.adhduk.co.uk/right-to-choose/

ADHD UK maintain a list of all NHS Right To Choose clinics currently offering Autism and ADHD diagnostic assessments for children, young people and adults in England. The list is updated frequently and includes:

each clinic's eligibility criteria (who can and can't access the clinic),
each clinic's waiting list times,
whether the clinic can prescribe or not,
for those that can prescribe, whether they can initiate, titrate and prescribe ADHD medication on an on-going basis through an NHS prescription or just for a set period of time (e.g. 3 months),
if the clinic runs a secondary waiting list after diagnosis for ADHD medication, and if so, how long that medication waiting list currently is. This waiting list time is in addition to the time you have already waited for the diagnostic assessment.

All of this information is really important for anyone thinking about expressing their Legal Right to Choose.

If a clinic isn't on this list, it's likely that it not available to you as an NHS service.

I've been told that if I want to access an NHS Right To Choose clinic I'll have "to do the leg work". What does this mean?

In England, patient's have the legal right to choose where they receive the healthcare determined as "clinically appropriate" for them. If your General Practitioner (GP) agrees that an Autism, an ADHD, or a combined Autism and ADHD clinical diagnostic assessment is appropriate for you, then you (the patient or their adult/parent/carer) must decide which NHS clinic will do the assessment.

Your GP can't make this decision for you.

It is the patient or their adult/parent/carer's responsibility to find out which of the approved NHS Right To Choose clinics can meet their needs/the needs of the child or young person they care for. This is not always easy to do.

Helpfully, the charity ADHD UK have a lot of the information you will need on their website www.adhduk.co.uk/right-to-choose/

Things to think about when making your choice

How long is the waiting list?
Where in England is the clinic?
Can the clinic give you the type of assessment needed?
If you're interested in ADHD medication, can the clinic prescribe?
Will your GP accept shared care for ADHD medication prescribing?
If you're diagnosed as being ADHD, will the clinic add you to another waiting list for medication or start prescribing right away?

If the type of diagnostic assessment required must have some or all appointments take place in person (face to face), you need to find out the location of the clinics. This is because you are responsible for travelling to and from the appointments.

As an example, if you live in Seaham and the clinic you're considering can only offer face to face appointments at their clinic in Devon, then this clinic may not be the right choice for you.

Why your GP might not agree to a shared care plan for ADHD medicine

In the NHS, some ADHD medicines are first prescribed by a specialist team. Later on, your GP might be asked to take over the prescriptions under something called a shared care agreement.

This means the specialist still gives advice, but the GP writes the prescriptions. However, GPs don’t have to say yes to shared care. Here’s why:

GPs can only prescribe medicines when they feel it’s safe and right for their patient.
Some GPs haven’t had ADHD training or don’t feel confident managing these medicines.
The GP surgery might not have the systems to do the extra checks and reviews safely.
If the GP doesn’t have full support from the specialist or clear information, they are allowed to to say “no, I can’t take this on.”

If a GP says no, they should explain why and make sure you’re not left without care.

Your specialist or local NHS team must then find another safe way for you to keep getting your medicine — for example, by continuing your prescriptions through the specialist service.

So, while a GP can say no to shared care, the NHS must still make sure you don’t go without your treatment.

***This section is in development. More information to be added soon***

Did you know that in many cases you have the legal right to choose where you have your NHS treatment?

If a GP needs to refer you for a physical or mental health condition, in most cases you have the legal right to choose the hospital or service you'd like to go to.

This will include many private hospitals if they provide services to the NHS and it does not cost the NHS any more than a referral to a standard NHS hospital.

You can also choose a clinical team led by a consultant or named healthcare professional, as long as that team provides the treatment you require. Find out more about choosing a hospital or consultant and choosing a mental health service.

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.

You have the legal right to ask for your appointment to be moved to a different provider if you're likely to wait longer than the maximum waiting time specified for your treatment - even if you've already been on the waiting list for months or years.

The hospital/clinic/service that you're on the waiting list for or the NENC Integrated Care Board (ICB) will have to investigate and offer you a range of suitable alternative hospitals or clinics that would be able to see you sooner. Read the NHS guide to waiting times for more information.

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 the NENC Integrated Care Board (ICB) as they must ensure patients are given choices. Click here to download the complaints leaflet.

If you feel that the NENC ICB did not resolve the complaint to your satisfaction, you're entitled to take your complaint to the independent Parliamentary and Health Service Ombudsman.

You can also contact Healthwatch County Durham as it is their role to get your opinion and find out what matters to you to help make sure your views shape the support you need. Healthwatch provides information about access to services and choices available to help people by taking more control of their own health, treatment and care.

Email: healthwatchcountydurham@pcp.uk.net Telephone: 0800 3047039

In addition, you can contact the North East NHS Independent Complaints Advocacy (ICA) to receive free support to make a complaint about the NHS in the following local authority areas: Darlington, Durham, North Tyneside,South Tyneside and Stockton on Tees

Website: North East ICA - Carers Federation

Click here for the North East ICA Facebook Page

Email: ica@carersfederation.co.uk

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.

For more information visit your choices in the NHS.

NHS Right To Choose in relation to neurodevelopmental diagnostic assessments

The charity ADHD UK maintain an up to date list of all currently approved NHS Right To Choose Providers for neurodevelopmental diagnostic assessments, along with waiting times and additional information.

Please note that although named "neurodevelopmental diagnostic assessments" most, if not all only offer assessments for ADHD and/or Autism. Click here for more information from the ADHD UK website.