The NHS right to choose - A lifeline or a Postcode Lottery for ADHD and Autism Care?

Did you know that ADHD patients can wait up to 7 years in the UK for an NHS diagnosis? That's an unacceptable time to wait, but is there a better way?

What is the Right to choose

The Right to choose is an initiative that the government introduced into the NHS in 2008. The Right to choose allows patients in the UK to choose which provider they use for certain healthcare services, rather than being forced to use local services, which often have significant waiting times and a very variable experience from one area to another.

The goal is to give people more control over their care and reduce inequalities. This includes both adults, young people and children. For mental health services, this includes autism and ADHD diagnosis.

How does this help people with ADHD and Autism?

People with ADHD and autism often ask for a referral to providers such as Psychiatry-UK or ADHD 360, as they have online services and much shorter waiting lists than local mental health providers and give them a more consistent experience.

Which providers can I choose?

Providers must be found by the NHS for the services in question, such as assessments and treatment for ADHD and Autism, and they must meet NHS standards and be listed as approved providers. This includes providers such as Psychiatry-UK and ADHD 360.

ADHD maintains a full list of providers: https://adhduk.co.uk/right-to-choose

What's the problem?

In theory, this is an excellent idea, allowing people to access reliable and timely care. However, in reality, the Right to choose is fundamentally broken.

In reality, the way GPs handle the Right to choose varies significantly. Many GPs are not aware of or do not fully understand the Right to choose and will, by default, refer people seeking a diagnosis to the local mental healthcare trust or, in the case of children, to the Child and Adolescent Mental Health Services (CAMHS).

Long waiting lists

Mental healthcare trusts have incredibly long waiting lists of up to 7 years, which leaves the patient with no support for a significant amount of time, which can lead to severe mental health difficulties such as depression and anxiety.

Rejection of Referrals

In the case of Child and Adolescent Mental Health Services (CAMHS), the waiting list is shorter. However, this is perhaps because they often reject cases due to the impact not being significant enough on the young person. I have even heard of cases being rejected because there is "no self-harm in evidence". Really? A child must be self-harming to get the support they need. How is this acceptable?

Undiagnosed and untreated ADHD or Autism can have a significant impact on a child's development, mental health and academic performance.

Shared Care

Shared care is an agreement between a GP, a third-party provider, and the patient to manage ongoing treatment together. It is an essential part of the Right to Choose process.

After using the Right to choose and obtaining a diagnosis, a shared care agreement is established for the ongoing treatment, with the GP taking overprescribing medication and monitoring the patient, which, in theory, will ensure the continuity of care.

This reduces the need for repeat visits to the specialist and saves patients money because prescriptions are made at normal NHS rates.

Refusal and cherry-picking of providers

The willingness of GPs to work with shared care providers varies dramatically, and in many cases, the policy is set at a local level, perhaps by Integrated Care Boards (ICBs), which means clusters of GPs in an area will adopt the same policy.

Some GPs will not agree to any shared care at all, whilst some cherry-pick which providers they will work with, even if they are approved NHS Right to choose providers. In this case, the patient may be asked to obtain a duplicate diagnosis from a specific provider before they will provide care to the patient.

This is especially a problem when a patient moves into the catchment area of another GP, who may refuse to work with a shared care provider, even if there was an existing shared care agreement in place that was working well.

Refusal to accept a shared care agreement means that a patient has no option but to work with the private provider directly and would be responsible for the costs of the treatment and medication, which can be significant. The only other choice is to go without treatment altogether, which can have a significant impact on their daily life and lead to severe mental health issues.

Ethical and practical concerns

The inconsistent application of the Right to choose and the refusal and cherry-picking of GPs when it comes to shared care is creating a postcode lottery, forcing patients to use specific providers, forbidding the use of others, and this limits true choice and raises significant ethical concerns.

In many cases, people are forced to seek duplicate diagnoses, taking their place on an already long waiting list and costing the NHS more money.

Why does this matter?

These challenges fundamentally undermine the NHS's responsibility to support neurodivergent individuals and are a direct reflection of and contribute to the stigma and misunderstanding of neurodivergence in healthcare.

People are not getting the treatment that they are entitled to and deserve, and this is having a direct impact on their mental well-being, career prospects and, in the case of children, their development and long-term prospects.

How it should work

The Right to choose and shared care can and should ensure that patients have access to reliable, affordable, and timely care, and the transition from private provider to GP should be seamless. However, this is far from the current reality.

What can you do if you want a diagnosis?

👉 Before speaking to your GP, it is essential to be prepared.

👉 Research your symptoms and the diagnosis criteria.
Attention deficit hyperactivity disorder (ADHD) - Diagnosis - NHS
Signs of autism in adults - NHS

👉 Document your experiences, including the impact on your life.

👉 Be aware of the Right to choose and shared care processes.

During the appointment

👉 Clearly explain why you suspect that you have ADHD or Autism, being specific and honest, citing examples and the impact on your life

👉 Mention any family history that you are aware of.

👉 Discuss referral options, politely but firmly ask for a referral to a specialist.

👉 Invoke the Right to choose, clearly and firmly, stating your reasons. If the waiting list for local services is long, mention that and state your Right to choose an NHS specialist provider such as Psychiatry-UK.

👉 If the GP refuses or is hesitant, it is important to remain calm and be prepared for this.

👉 Reiterate your Right to choose "I understand the NHS allows patients to choose specific providers for mental health services, including referrals."

👉 Ask them for the rationale behind their decision and how it aligns with the NHS right to choose

Seek another opinion

👉 Ask for another opinion from another GP at the practice.

👉 Ultimately, remember that it is your Right to go to another GP if your GP refuses.

Advocate for change

👉 Write to your GP, with a formal letter requesting an explanation for the denial of treatment and referencing the NHS guidelines on the Right to choose and shared care.

👉 Contact your local ICB (Integrated Care Board). Ask them to review your experience and the policies in your area. ICBs are responsible for ensuring consistent and fair healthcare practices.

👉 Raise awareness in your community. Get in touch with your local newspaper or online news outlets and share your experience.

👉 Shout about your experiences on social media. Share your story on platforms like Facebook, X and LinkedIn

What needs to change?

Neurodivergent people are suffering, and it's clear the autonomy and lack of guidance are causing drastic variations in the experience that patients face when asking for a referral to a specialist provider.

ICBs (local integrated care boards) play an essential role in influencing the practices and policies of GPs. Therefore, they must play a significant role in eliminating the postcode lottery and ensuring fair and ethical treatment of neurodiverse individuals.

👉 They should provide clear and consistent guidance to GPs about the Right to choose and shared care, referring to NHS guidelines and their obligations and responsibilities regarding supporting and prescribing medication for neurodivergent individuals.

👉 Provide training for GPs on the Right to choose and shared care protocols and manage autism and ADHD in primary care.

👉 Facilitate awareness campaigns to inform patients about their rights and how to access shared care.

👉 The ICBs should address the financial and administrative burden on GPs by ensuring funding is available to enable GPs to meet their responsibilities for shared care.

👉 Creation of simplified and consistent pathways to enable the smooth transition of care to GPs from private providers

👉 Expand provider networks by increasing the number of providers, increasing the choice of patients, and reducing bottlenecks.

👉 Tracking compliance by monitoring if GPs are adhering to the guidelines, and identifying areas for improvement and by conducting audits and patient surveys,

Summary

The implementation of the Right to choose and shared care agreements in the NHS needs to change urgently. ICBs must step in and provide clear guidance, GP training and funding to remove barriers to the care of neurodivergent people. Consistent policies, improved awareness, and streamlined processes are essential to end the postcode lottery and ensure that people get access to the timely, fair and ethical treatment they deserve.

It's high time that the NHS stopped letting people down and delivered on its promises.

Read my own story

You can read my own story in my recent blog post