To ask if you've ever successfully challenged a GP refusal to prescribe under a shared care agreement

[OptimismvsRealism]

Debilitating illness - NHS consultant waiting list 5 years - used up significant savings and went to a private doctor who set up a plan - GP says no it's got to come from the NHS and no they won't take your diagnosis and adopt it you go back to day 1 on a 5 year waiting list. The same private consultant btw works on the NHS team that would make the diagnosis.

Cost of the medication to NHS is actually not that much but cost to an ordinary individual on private prescription isn't within realms of possibility.

Is there any alternative?

Oh and the aibu, aibu to despair that the NHS seems to actively want people to suffer?

OP I have complete sympathy with your predicament.

But here a gp has clearly explained the reason why shared care is refused and you’ve proceeded to completely ignore this and go on about how drs won’t see you.

Do you actually understand that the NHS isn’t a complete medical service?

NHS care has strict limitations and boundaries. Experimental, unproven, unlicensed or expensive treatments or investigations are not part of the NHS remit. Even valid possible diagnoses/treatments aren’t necessarily part of the NHS remit. There isn’t even enough money in the system to do the basics properly.

What is your diagnosis? Is it an operation you need or ongoing drugs? I’m not sure from your posts what your illness is?

So you genuinely think they deliberately do it to make people suffer really?

So you think no private consultant should be trusted about anything then presumably? Or is it just adhd you think people shouldn't have?
I think they should be regulated as they are in the NHS to check their referrals and ratio of diagnosis. If similar to NHS practice, all good. But of course, they don't want that.

It's nothing to with what "they" want they ofc should be regulated. They are regulated by the cqc but all healthcare should be more closely monitored because frankly a lot of it is shit.

Can you answer my question though?

@vivainsomnia that’s not necessarily a valid yardstick.

It’s quite likely that a higher proportion of patients seeking private diagnosis are genuinely suffering from the condition therefore one would expect a higher rate of diagnosis.
People don’t tend to pay out £2000 for assessments/tests when there’s nothing wrong with them (though a small minority could be healthy anxiety sufferers I imagine). Going private is almost self screening to some extent.

To actually answer the OPs question, yes I have successfully challenged a GPS refusal to prescribe under shared care.

It was a case of bad timing for me, because had the diagnosis from a private practice come just a couple of months earlier there would have been no problem. Unfortunately the ICB for the area I live in decided they were going to blanket refuse all shared care prescribing for this condition until they complete a review around how to fund the increasing costs related to more people going for private assessments. (The review has still not concluded one year on from that!)

I really wouldn't listen to all the responses on this thread from people who think you are obsurd for expecting the health service to provide said health service!

In my case, perhaps through luck, I managed to speak with a very understanding GP at my surgery who had personal experience of the condition (they disclosed this in the phone call) who agreed to prescribe under shared care. The way this works is:
3 months titration via private prescriptions and reviews at private practice, and once stable the GP prescribes NHS prescriptions
Then there are 6 monthly reviews at the private practice (fee paid) and any adjustments in dose etc are sent back to GP for the next prescription.
So there are ongoing costs, but it's much less expensive than paying the cost of the medication through a pink prescription!

OP, this is the exact reason.

I work in a specialty that prescribes drugs that use shared care agreements - it's called an agreement because both parties have to agree to it. Just as the GP can't say to me that I should do something that I don't want to, I can't order a GP to do something that they don't want to - they aren't my slaves or employees to tell what to do. Every healthcare professional has a duty to act within their own competence and decline things that are outside their competence, or to decline to provide something.

There are incredibly important points about being able to access specialist advice if there was an emergency or if private healthcare stopped for any reason e.g. patient runs out of money, if the consultant became suddenly unwell and is not working, retires or leaves the private hospital. If any of those things happen to me, my colleagues would take over, but there are no such arrangements in private hospitals.

In my experience the commonest reason for pts transferring to the NHS is either that they are self-funding and can't afford it, or that their insurance no longer covers things (some of the most expensive and fancy drugs that I prescribe are rarely covered by insurance, so we often see pts have to move to the NHS even if they have had private care for a number of years).

It's nothing to with what "they" want they ofc should be regulated
Exactly, so why aren't they?

To answer your question, I think that yes, ADHD/ASD diagnosis is different. Very few other conditions cost £2k and often much more for a diagnosis, especially without instrumental diagnostic tests.

To be fair, I can understand why the GPs don't like shared care agreements, but it's not just adhd it's a problem for.

My DD was diagnosed privately with a severe life-long auto-immune disorder after dropping out of school. The GP was happy to accept shared care as she needs drugs for life (her thyroid is burning out and she needs levothyroxine).

If the GP hadn't accepted shared care it would have been a choice between paying or accepting very severe impact on her body such that she would be in permanent pain, fatigued, limited mobility and eventually die without the drugs.

We shouldn't have a healthcare system where it's a choice between paying for private healthcare and prescriptions or severe illness leading to death. Unfortunately we do at the moment.

@OptimismvsRealism to clarify, you can challenge all you like but gps are rightly 100% protected from being forced to prescribe outside their field (ie that of general practice).

If a gp agrees to prescribe on a “goodwill” basis they bear the responsibility if anything goes wrong, hence their general unwillingness to do so.

They may also be prohibited by their Trust from doing so.

Your case was completely different though because the GP was happy to prescribe and the ICB were refusing because of the cost.

www.bridgestreetmedicalcentre.com/private-prescribing

This is an example policy from a GP surgery that I just googled (there are many similar) It explains very clearly their policy and the rationale and is available on their website so transparent

I would always advise anyone who asks me to check with the GP in advance that they will take over prescribing and not assume and to pick a reputable provider who is able to do official shared care agreements

You could complain but if your GPs practice is in line with policy it will be a waste of time. You can lobby your MP to campaign for a better NHS service but it doesn't solve the immediate issue.

I would suggest you look up policies at different GP surgeries and switch to one that will do shared care for ADHD meds with your specific provider as the quickest way to resolve the issue.

@OptimismvsRealism you could start a new thread with the illness and treatment named and see if people have any suggestions about how to get it on the nhs

@ColdinNovember

Op hasn't said its adhd, but lets assume it is. Isn't a DSM-iv still used to diagnose for both ASD and ADHD. What process/system are some of these private AHP or HCP using?  So even if the person has been ripped off and gone privately to someone who isn't qualified to diagnose or didn't use the right criteria, one would hope that once that person got into the nhs system, the  Consultant or camhs or whatever it is, they would use the correct dsm-iv.

The GP was happy to accept shared care as she needs drugs for life (her thyroid is burning out and she needs levothyroxine)
This is very different.

For one, the GP will be familiar with this medicine and it's management.

For two, the diagnosis will be standard. I assume through blood tests or imaging.

For three, if there were any issues, they could refer urgently in the NHS and the wait wouldn't be 5 years.

But it's wholly subjective whether someone meets those diagnostic criteria. It's whether a dr decides to put a tick in a box or they don't. If you want a diagnosis just look up the criteria and say what you need to say. If you are convinced enough to pay privately I'm sure you know the criteria and how you meet them so you can get a diagnosis.

I mean, take that up with the government? I'm not in charge of it.

You don't need to pay 2k for an adhd diagnosis. Hth. And do you have personal experience of no diagnostic tests? I had diagnostic tests through rtc, by a company who also offers private assessments?

Or have you assumed that every company is like the recent documentary?

The GP was eventually happy to prescribe, after initially a blanket refusal being applied. The OP asked if anyone had ever successfully challenged refusal to prescribe under shared care and I answered because I have.

I think the NHS behaves as though comfort is an immortal luxury and GPs disapprove of spending money on it. People mock the American healthcare system but at least some people get treatment there.

Dsm-iv is only one of the tools
class="underline">inadultsfinalguidelinesjune2017.pdf ADHD diagnosis

It should be a very comprehensive assessment that couldn't be done in just one hour as some private providers offer.

Are you for real???
The NHS has finite inadequate funding.
The US system has unlimited funding.

You don't need to pay 2k for an adhd diagnosis. Hth. And do you have personal experience of no diagnostic tests? I had diagnostic tests through rtc, by a company who also offers private assessments?
And that's the problem. Some will diagnosed in one hour session so much cheaper, yet if they followed guidance, there is no way a thorough reliable diagnosis can be undertaken in such limited time.

If they do it properly, it should take quite a few hours and at £300 plus per hour, with medication and follow ups, you quickly get to £2-3k.

It's up to you as a patient to decide what you're happy with isn't it, choosing someone dodgy might mean no sca. I did a lot of research but in the end got seen through rtc.

So it's a problem if it costs you 2k and it's a problem if it doesn't. OK lol

What's your solution?