I was in this sort of situation a few days ago with a GP who refused to prescribe meds – didn’t get into thinking about legal stuff because a lot can be done before have to go that far.
I got dx in NZ, and when moved to UK registered with a GP to continue meds. They referred me to the Maudsley, meanwhile they agreed to continue to prescribe MPH as before as an interim until the assessment. When I eventually got to see the Maudsley (after Practice screwed up the referral process delaying this by nearly a year), the Maudsley confirmed dx and recommended continuing same meds.
Trouble came after the report was sent! The GP then told me he would not continue to give prescriptions as it was ‘outside license’ and the report left it to his discretion whether or not to prescribe! What’s more I wasn’t told this until I went to get a new prescription so I was left in the lurch with nearly no meds - and only then suddenly told that treatment I’ve been having for years is being stopped forthwith. No discussion, no alternative treatment plan proposed, no medical reason for stopping treatment, not even suggesting I could get a second opinion, simply a flat out refusal to prescribe these meds for an adult (though would do for children as not outside license). Just had door closed and flat refusal. (Grrrrrr, Arghhhh, Wahhhhh).
Can you believe just stopping a person’s treatment for a ‘mental health condition’ just like that?
More care and attention is given to someone giving up smoking! Anyhow, after much cajoling I managed to squeeze out of him one final prescription for meds for one last month….
So, after managing to pull myself together a bit, I then looked around for who I could turn to for help. That's how I came across AADD UK. I then contacted the local community mental health service and spoke to the practice manager there – who was very helpful and said that they could arrange an appointment with their own psychiatrist who could give prescriptions as an interim until the GP situation is sorted. I then wrote a letter to the GP which I emailed to the practice – basically setting out the grievances. I also gave a reasonably tactful reminder of General Medical Council code of conduct, saying if necessary I would look elsewhere for a GP who could offer treatment in accordance with GMC practices (I also checked first that the GP is member of GMC). The GMC practice directions are well worth reading, and I’d advise getting a GP who is member of GMC. Patient care comes first and foremost, and proper inclusion of patient in decisions is a ‘must’.
Anyhow when I went to collect the script , the receptionist asked me to see the GP, who told me that there had been a practice meeting and they had now come to a decision to continue the prescriptions, though the GP was still unhappy about this (I now have to get script from another GP at the practice – no worries!). I then met with the Practice Manager, and got the whole thing finally agreed so have no anxiety that meds might suddenly be stopped. (The PM thoughtfully set this out in a letter together with requirements for follow-ups at Maudsley have to comply with as part of the agreement - something which I think should be a requirement of good practice in ADHD services).
What also came out of this is their admitting to the problem being down to their lack of experience with ADHD, and things got towards actually working together to get it to happen as it should. (BTW the GP repeatedly assured me he had a 'good understanding of ADHD' - be wary that it seems to be usual that most prof services don't recognise the limits of their knowledge of ADHD - especially adult ADHD).
Clearly the whole dysfunctional inattentive service is far from ideal – even now there still hasn’t been any guidance on adult ADHD support groups (which are incredibly important especially when first get dx), or information on services, literature on ADHD or the like. Rather just left to navigate through the system and fend for oneself.
For someone in similar situation I’d suggest first getting in touch with AADD UK – it can be really hard to advocate effectively for oneself, especially if one is new to the system, and with ADHD being upset/angry/desperate can make it impossibly hard to cope with such situations oneself. AADD UK is building up a great ‘knowledge base’ of how to help people, and Roland and others here provide outstanding support and help (e.g. letters to PCT etc.), and have good experience on how to navigate the system, and every ‘incident’ only adds to this ability and experience of how to tackle such issues. Having a support person/advocate to help one through the system is really valuable. Next I’d suggest knowing where you stand (which AADD UK can help with).
I’d also suggest changing GP’s if you hit a brick wall – something I was considering, but I would want to meet to discuss fully and get to know prospective GP before registering with them. I’d also check they are a member of the GMC and take the time to read and understand the duties of a GP under GMC practices.
It’s very obvious that all too often it’s a maddening frustrating disjointed system, and one can feel like one is falling through the cracks (why does that happen to people with ADHD!). On the upside, it seems that at a ‘strategic’ level, this is something the NHS want to address, and these experiences can be used to help identify the shortfalls and problems, and AADD UK can help in bringing these to NHS attention so these problems can be tackled and a proper coordination and management gets put in place in future (we’ll get there!).
Above all, don’t give up and feel it is hopeless, and feel desperate, helpless and left alone out in the cold. The problem is down to inexperience and ignorance in the system, but there are people here who can and will help and will take it up with the people in the system who can make things happen as they should. I found by pressing the right buttons what seemed to be a hopeless dead-end situation got turned around and resolved in 24hrs. It may not always be that quick and easy, but with the right help and support it needn’t be nearly as impossible as it might seem.
In terms of legal recourse, yes if need be I think one could certainly apply for Judicial Review if there is an unreasonable decision by a Public Authority (i.e. NHS service). However I don’t think that should be necessary – rather IMO we need to start to work with NHS more closely at a general policy level to help them put in place what is needed to help them achieve their own objectives. Share with them the catalogue of woes, problems, flaws and failures in the system we have encountered, and as an organisation representing users of the system, make the recommendations of how to tackle these in ways which address the needs of those it should be serving – people with ADHD, before and after dx. Eventually we’ll get to drain the swamp, and fighting the alligators is just part of that process.
Collectively as a ‘user group’ and key stakeholders we have more strength and power to take on these challenges that we might think. Every problem, difficulty, and failure in the system we come across adds weight to campaigning for proper recognition and service delivery, and every alligator we fight gives us as a group a stronger position with the NHS in getting proper systems, processes and policies put in place. We shouldn’t consider this as pushing boulders uphill, but rolling them downhill on the people responsible for implementing NHS policy.
It's natural to feel very discouraged sometimes, and that can feel almost crippling, which is why it really helps to join forces. Reading the introductions and other posts here, there are an amazing group of people - for me just knowing that there are others I can turn to for support made a big difference and really helped keep up the morale in tackling the difficulties of the past few days - so a big thanks to one and all!
So, to return back on topic, as I see it, there'll be no need for lawyers if we keep up our morale, help each other not lose sight of our strengths, and work together in confronting the problems.