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February 2025

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We have received numerous enquiries from concerned parents regarding the information provided by MSE ICB, and we believe “it’s essential to provide clarity in supporting the neurodivergent community. A shared care agreement for ADHD medications is available for adults, children, and young people when the Patient Right to Choose NHS framework has been used and not the NHS local commissioned diagnostic centre – Note that in Castle Point, Rochford Districts, and Southend, the Lighthouse Centre is the diagnostic Centre Essex Partnership University NHS Foundation Trust

Mid and South Essex Integrated Care System literature states,” Is shared care possible between a private healthcare provider and a GP?”

Shared care with private healthcare providers is only possible when the service is provided for the patient on behalf of the NHS. If a patient sees a private specialist without NHS involvement, shared care agreements and prescriptions from NHS GPs for medication recommended by the private specialist are usually impossible.

If patients wish to obtain shared care medication through the NHS, they should speak to their GP about transferring their care for the condition to a local NHS service. This would be considered a new referral, and patients would be placed at the end of any existing waiting list for that service.”

ADHD prescribing – Mid and South Essex Integrated Care System

This information is misleading.

A Shared Care Agreement is a collaborative arrangement between you, your ADHD psychiatrist, and your GP, allowing for shared management of your ADHD treatment once your medication has been stabilised and optimised.

Shared care agreements are not legally mandated but are considered a professional courtesy. However, the NICE guidance issued in 2018 states, “After titration and dose stabilisation, prescribing and monitoring ADHD medication can be carried out under Shared Care Protocol arrangements with primary care” for adults with ADHD.” This also applies to CYP’s too.

This agreement enables your GP to take over the prescription of your medications and perform basic monitoring of your physical health as directed by your ADHD psychiatrist. While your psychiatrist will retain overall responsibility for reviewing your care annually and addressing any physical or mental health issues related to ADHD or its treatment, it is possible to transfer your care entirely to NHS services. This may involve referral to a specialist NHS ADHD service or, for children, the local Child and Adolescent Mental Health Service (CAMHS), potentially having to be re-diagnosed.

The current waiting list for an ADHD assessment on the NHS is approximately three years. This wait is impractical for some people, particularly parents and guardians of school-age children needing urgent care. By obtaining a Shared Care Agreement, patients can expedite receiving an ADHD assessment and diagnosis if clinically indicated, along with a comprehensive treatment plan and medications if necessary.

Understanding the NICE guidelines is crucial:

The NHS should not withdraw NHS Care because a patient chooses to buy private care, nor should patients who access private care be placed at an advantage or disadvantage about the NHS care they receive. The NHS should continue to provide free-of-charge care that the patient would have been entitled to had they not chosen to have additional private care. Where the same diagnostic, monitoring, or other procedure is needed for both the NHS and private elements of care, the NHS should provide this free of charge and share the results with the private provider.

As a reminder of the obligations that govern the right to treatment, ADHD patients are protected by:

1. The Equality Act 2010, which protects disabled individuals from discrimination. Denying legally prescribed medication without evidence of any specific clinical risk may constitute unlawful discrimination.

2. The NICE Guidelines for ADHD treatment state that patients diagnosed by qualified professionals are entitled to treatment continuity, including ADHD medication. Refusing to honour the Shared Care Agreement contradicts these established clinical standards.

3. The Health and Social Care Act 2012 mandates healthcare providers to respect patient choice and prioritise high-quality, patient-centred care.

4. The General Medical Council’s Good Medical Practice Guidelines require doctors to act in patients’ best interests, provide timely and necessary care, and avoid causing unnecessary harm.

Withholding ADHD medication, despite the clear medical need for continuity of an established safety of this treatment, is contradictory to these guidelines.

We recommend families contact their local MP and/or follow the guidelines on our website https://strmsupport.co.uk/know-your-rights/using the Comments and complaints – Comments and complaints – Mid and South Essex Integrated Care System

Case study: Challenges Faced Without ADHD Medication

Jenny is a 39-year-old woman with a diagnosis of ADHD. Jenny runs her own business and is the primary carer for two children, Carla and Josh. Both children have a diagnosis of autism and ADHD; Carla’s diagnosis showed scores high enough to suggest that she has an autistic profile for Pathological Demand Avoidance.

When Carla was 6, her parents became increasingly concerned because of the sudden onset of extreme emotional distress that Carla displayed – she would regularly claw at her skin until it bled and would attempt to tie a ribbon or rope around her neck. Carla regularly expressed her wish to die.

Jenny contacted her GP so Carla could be referred to CAMHS for support. However, she was told that Carla did not meet the threshold for a referral because the demand was already too high, and they were struggling to manage current waiting lists and caseloads.

Josh was sensitive to noise and found his volatile home situation difficult to manage. At school, he was noticeably inattentive, and it was clear that he struggled to access the curriculum. Josh regularly called out in class, disrupting lessons. He was behind academically, and he found it difficult to make and retain friends.

Jenny suspected that both children had ADHD but had already been told by her GP that referral to the Lighthouse would have them sitting on a waiting list for a minimum of two years.

Afraid that no support would be available for her children via the NHS, Jenny decided to take out a loan so that both children could be assessed and diagnosed privately. The assessments, consultations, and private medication titration totalled over £4,000 by the time Josh and Carla were ready to be transferred back to the NHS.

Having already discussed the arrangement with their GP, shared care plans were agreed upon. Jenny agreed to continue with the private consultations each year, and the GP agreed to prescribe repeat prescriptions each month. They already did this for Jenny under shared care, and the arrangement worked well.

The shared care arrangement worked well. With medication, Josh not only caught up academically but also began exceeding targets across a number of subjects. He transitioned to secondary school, made a number of friends, and has been doing well. Carla became less emotionally reactive and is thriving academically. Her mental health is much improved, and with support, she has been able to remain in school.

This arrangement has worked well for years, with minor disruptions related to the national shortage of ADHD medication. However, the recent ICB decision, which resulted in GPs issuing a three-month notice period to terminate ADHD shared care agreements, will leave Jenny and her children without access to medication. It is not financially viable for them to continue privately, and having asked to be transitioned to NHS services, Jenny has already been told that the waiting lists are so long that they will be without medication for several years.

This will have a significant impact on the family.

– The medication needs to be reduced slowly; otherwise, it risks placing substantial pressure on the nervous system.

Jenny will no longer be allowed to drive. This will have a detrimental impact on her business, and her income will suffer.

– Jenny is the sole carer for her housebound father, and without access to a car, he will no longer be able to access his medical appointments, and she has no way to get to him if he needs help.

– Carla will be transitioning to secondary school within the next couple of years, and without medication, she is at increased risk of school refusal.

– Jenny is concerned that without medication, Carla’s mental health will once again become a struggle.

– Josh will be sitting exams next year, and without access to medication, he will be placed at a substantial disadvantage at a key.

Conclusion:

Challenges Faced Without ADHD Medication

1. Deterioration in Mental Health and Wellbeing

2. Decline in Financial Stability

3. Declining Job Performance and Financial Strain

4. Impact on Physical Health

5. Negative Long-Term Impact on Children

Jenny’s experience illustrates how the loss of ADHD medication due to unnecessary cost cuts can have a profound impact on an individual’s mental health, family dynamics, and overall quality of life.