Shared Care ADHD NHS Update: December 2024
Background
Shared care ADHD NHS issues are still causing real problems. Regular readers will be aware of the current issues in the NHS with shared care and the increasing tendency for GPs to decline it. Since moving house in May, I have had struggles with my new GP to get any treatment for my ADHD.
Here is an update. Better news, but it really highlights the stupidity of the current situation.
This sits inside the wider problem of ADHD support in the UK, where NHS pathways, Right to Choose, shared care, medication and practical support often fail to join up properly.
Understanding shared care in the NHS
Shared care in the NHS is a partnership between a specialist, like a psychiatrist, and your GP to manage your ongoing treatment. For ADHD, it usually takes effect after you have been diagnosed privately and started on medication by a specialist.
The idea is that once your treatment is stable, your GP takes over the prescribing and monitoring, so you do not have to keep going back to the specialist.
For a plain English breakdown of the process, I have a separate guide to ADHD shared care plans.
The problem with shared care for ADHD treatment in the NHS
This should make things smoother for everyone, but in reality, it can be a bit of a mess. Many GPs are reluctant to take on shared care for ADHD, often because they do not feel confident prescribing the medication or taking resources away from core services.
Many GPs now flat-out refuse shared care agreements with private providers, which means people have to pay for their prescriptions out of pocket. That is on top of the cost of going private in the first place.
It is frustrating and unfair, especially when ADHD meds are life-changing for so many people, and all they are asking for is a bit of support.
This postcode lottery and lack of consistency in shared care is a huge barrier for people trying to manage their ADHD effectively. It is something that desperately needs addressing if the NHS is serious about improving neurodiversity support.
Shared care problems have now become part of the wider NHS Right to Choose ADHD and shared care crisis, especially where people are diagnosed but cannot continue treatment locally.
My experience after moving and registering with a new GP
In May 2023, I moved to a new area and had to register with a new GP. I was aware of this potential situation so I asked the receptionist if the GP would be amenable to shared care. I was told that there were shared care agreements in place, although each case is taken on its own merit.
Encouraged, I went through the registration process. When I met my GP for a medication review, he agreed to all of my existing medication, other than the controlled drugs that I was prescribed for ADHD. He said that he could not sign that off. However, he would pass it on to their specialist, who would deal with shared care issues.
I was contacted two weeks later by the GP surgery by text message to be informed that they only took on shared care with Psychiatry-UK and, therefore, my agreement would not be honoured.
I contacted the GPs and after several attempts, I managed to get a meeting with the person that sent the message. I explained that this was extremely unusual and very inconsistent. In the past, I have found GPs that would blanket refuse any shared care, but I have never come across any that cherry-pick.
I pointed out that this diagnosis was made by a GMC psychiatrist who works for the NHS, and queried that they would not accept a fellow NHS clinician diagnosis. She could not answer this but agreed it was strange.
I asked for her to review this decision, based on the fact that my private clinician actually worked for the NHS, that this shared care agreement had been working for 18 months with my old GP, and that it was unacceptable that they could not provide me with the same support that my old GP had.
Updates on my shared care agreement and medication
I eventually heard back from the GPs, and the good news is that they have agreed to take on my shared care agreement and will prescribe my medication. All I had to do was send them my diagnosis and let my private provider know.
However, they said that they would only honour the shared care on the provision that I was referred to Psychiatry-UK for a diagnosis, as this was the only provider they worked with on shared care.
So, I have now been referred to Psychiatry-UK and have registered on their online portal. As part of that process, I have sent them my diagnosis and my QB test, which is a screening test. Despite doing this, I fully expect that I will be treated as a new patient and have to go through the full process.
There is no indication as to how long this will take, but I believe that the waiting list is several months. That is significantly shorter than the local NHS Mental Health Trust, which is currently seven years.
The positive outcome: I can access ADHD medication
My GP is currently prescribing my medication, and amazingly, for the last two months, I have been able to collect from the local chemist, and it is in stock.
This in itself is a result, as there is currently a global ADHD medication shortage, which has been going on well over a year.
Ethical concerns about Right to Choose in ADHD care
I have been forced to use the Right to Choose route to choose Psychiatry-UK as my provider.
This is not a choice. I have effectively been blackmailed into this by my GP, who would have refused my medication if I had not agreed. This is fundamentally undermining my right to choose, and I would argue it is completely unethical.
The inefficiency of duplicate diagnoses in NHS ADHD services
I have been placed on the Psychiatry-UK waiting list for a diagnosis that I already have, and this will take the place of somebody else.
Finally, the NHS will have to pay for a diagnosis that I already have, and that is not including the administration costs of handling this referral with Psychiatry-UK.
What am I doing about it?
I am playing along with this, as my GP has made it clear that this is the only way that they will continue to prescribe my medication.
However, given the current crisis with ADHD diagnosis in the UK, with over seven years of waiting lists and funding shortages, this situation is completely ludicrous. That is before you even get to the additional costs to the NHS and the questionable ethics of being forced to use a specific private psychiatrist by the NHS.
If you are dealing with work at the same time, this can spill into employment very quickly. Access to Work may help with practical workplace support, coaching and adjustments while the medical system crawls along in the background.
Have you been affected?
I would love to hear from you if you have any similar stories or if you have been flatly refused shared care from your GP altogether.
Frequently asked questions
What is shared care for ADHD medication?
Shared care for ADHD medication is where a specialist and GP share responsibility for ongoing treatment. Usually, the specialist starts and stabilises medication, then the GP takes over prescribing and routine monitoring.
Can a GP refuse shared care for ADHD?
Yes. GPs can refuse to enter a shared care agreement. This can leave people paying privately for medication or being pushed back into NHS ADHD referral routes, even when they already have a diagnosis.
Why is shared care for ADHD causing problems?
Shared care for ADHD is causing problems because different GP practices apply different rules. Some refuse private shared care completely, some accept certain providers, and others make decisions case by case. That creates a postcode lottery.
What is Right to Choose for ADHD?
Right to Choose allows NHS patients in England to choose certain providers for assessment and treatment. In this case, the issue is that being pushed toward one provider does not feel like a genuine choice.
Why is duplicate ADHD diagnosis a problem?
Duplicate ADHD diagnosis wastes time and NHS money when someone already has a valid diagnosis. It can also take up appointment capacity that could have gone to someone still waiting for assessment.
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