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?

It was only approved by NICE late last year and it is very closely guarded at the moment due to cost compared to other treatments.

I didn’t go looking for this medication and hadn’t even heard of it until it was prescribed. So no queue jumping or trying to game the system. I really wanted to just come away with a proper diagnosis.

That makes a lot of sense from the GP perspective that it's about the ongoing back up

As an NHS specialist who does not do private work I am afraid to say that there are a number of Wild West private sector providers whose diagnoses and treatment plans I would not recognise.

NHS Drs largely have to prescribe with governance frameworks and agreed guidelines which private Drs don't have to. Some of my patients have absolutely been harmed by paying for dodgy opinions and treatments in the private sector.

There is obviously a financial incentive to make the diagnosis and prescribe the treatment that patient who are paying privately want. Whoever heard of anyone coming away from a private clinic without the ADHD or ASD diagnosis they were looking for?

But doctors won't see us. It isn't safer to be denied help. I'd be better off with a medication dispensing ATM than a GP system.

So better that some people live and die in misery?

How much ongoing input will your diagnosing consultant have? With shared care, there has to be ongoing monitoring between you and the specialist, and ongoing rapid communication between the consultant and the GP. In my practice, if the consultant doesn't agree to respond to GP inquiries within 48 hours and consult with the patient face-to-face every 6-12 months, they will not agree to shared care. You can't just go private to get a diagnosis then present that to your GP and expect them to provide you with prescriptions.

Of course they do! There are some terrible private providers out there but not all. And let's remember a lot of these private providers are employing NHS staff to assess also. Do you think they're professional in one job and not the other?

Bad providers have been highlighted but let's not tar everyone with the same brush, especially those you'd see through the nhs anyway!

Also there's not a financial incentive to make the diagnosis because you would surely pay whether you got the diagnosis or you didn't!

Because if they diagnosis you and start you on a treatment plan, you have to have regular ongoing reviews. These ongoing reviews cost £hundreds each time.

True, but who do you think that money is going to?

Because it's not going to the assessor or the prescriber. Because they'll either be salaried and paid regardless, or self employed and payed by the hour.

There is no way that they personally could financially benefit from that, unless they are a one man band I suppose.

But even so, it would be so unethical and so easily uncovered I can't imagine many professionals would risk their registration over it.

If you take the emotion out of it, the GPs job is to keep you safe (including proper safe monitoring via specialist) and themselves safe (not losing their job, or being subject to demoralising complaints when things go wrong and they’ve prescribed above their knowledge level, or L eaving family without the main earner etc). Don’t look at this in an adversarial way.

correct however my consultant was a He in this case

You must remember also some medications are too expensive on the NHS so not licenced but can be consultant prescribed

Apologies if I’m getting you mixed up. Yet someone here was thinking GPs won’t prescribe because of cost constraints or whatever else, in other words not extending the same thought that they just wouldn’t want to risk their registration or be unethical.

I don't know what you mean. You pay your consultant for the ongoing consultations. Take ADHD for example, during titration you have to see your consultant on average every 3 months, then every 6-12 months. You have to pay for those sessions and that money goes to the consultant. It is no risk to their registration.

That wholly depends on how you're seeing them. If they're a one man band you're paying them. If they're a big company, which are big business in adhd, you're very likely paying the company, not the clinician. A lot of those clinicians will be nhs clinicians moonlighting I imagine.

If you're paying a lone consultant, yes perhaps there is financial incentive but I imagine it's a small minority of crooked clinicians who would do this. Misdiagnosis someone for financial gain absolutely would risk their registration. Why would it not?

I think you are mixed up. The poster was saying private services will misdiagnosed adhd and autism for financial gain. I don't believe that to be true, at least for the bigger organisations because the individual won't benefit from diagnosing you as they'll be salaried or paid by the hour. Not paid per positive diagnosis.

Private companies have performance related pay 😄 I truly have no idea if this is the case in private healthcare, just joking.

I agree with @StormingNorman and disagree with @MitskiMoo :

MitskiMoo
Honestly, it sounds like you thought you could beat the system because you could afford the private consultation. This used to happen a lot, especially with operations. They paid for the private diagnosis then jumped the queue. It's either/or, not both.

Beat the system? You mean try to get healthy and live a full life?

Trying to Make me feel bad? As if I'm cheating the system? For paying to see someone?

Op hasn't said what her condition is. And this is AIBU. As a pp suggested, she'll get better advice from others experiencing it if she posts exactly what condition it is , in health section. But not the traffic of AIBU.

But. May I encourage some sympathy and empathy from all.

If you've ever had a medical condition or been in pain then you'd know that it can be so all consuming that you'd do just about anything.

Why wouldn't we pay, if we could afford to, privately, if the nhs is failing us. You'd be a bit silly to not recommend to a friend that she doesn't at least consider going private, if she can afford to, to get say a pain killer if in bad pain. Shame nhs forces us to, but needs must.

I paid to be seen privately for a broken back in 4 places, when nhs made so many bodges my care was poor over the last 2 years. I'd pay again, believe me!!

My friend paid privately for meds, and an adhd and ASD diagnosis, all the family had been badly affected when the dd hadn't left the house for months, and the nhs waiting time has just changed from 2 years. To 8. Yes, 8 years. You wouldn't pay? Get real.

Or at least appreciate that some conditions are so awful, the pain so bad. For certain conditions. If you can afford to, it's a shame we have to. But why would anyone NOT say try and get some sort of pain relief. Eg go to see a £60 physio privately whilst waiting for nhs ? You'd be mad not to! If you can afford it.

It is really difficult. The NHS offers either the 2 week wait - very impressive and efficient IME. Or, the standard pathway which could be weeks, months or years, or even just
"computer says no". I got the last option a few years back and in desperation I contacted my MP. Somehow she got me an appointment and I moved up to the few weeks option. I was then diagnosed with something quite serious and became very unwell quite quickly. If she hadn't intervened I might have had to scrape up the money to go private, get my diagnosis, then what? It is really hard to navigate and I don't blame anyone for trying to get help any way they can. OP I am sorry you are in a difficult situation. I hope you manage to find a way through.

My surgery accepts shared care but not for private diagnoses of ADHD or ASD.

The ADHD clinic said it's because they feel an NHS diagnosis is the gold standard. In other words they don't trust some private diagnoses.

Private clinics are profit-making businesses. They are usually owned by the consultants who work there. They aren't working for a big company...they are the big company. Just look at Psychiatry-UK - probably the most popular private online psychiatry service carrying out ADHD assessments in the UK right now, right? Their consultants are partners in the business. So it is to their benefit as a business and as individuals to diagnose and set up treatment plans for as many people as possible. Some clinics even give commission-based bonuses. And many consultants have their own private businesses where they will see patients.

It's not unusual for consultants to work for the NHS, and out of a private clinic, and see private patients on their own.

I don't know what the condition that the op has, but my DD has adhd and her gp was happy to do shared care with a private consultant.

This was after she was diagnosed privately and had six months of private prescriptions and titrating to get the correct dose.

The expectation was she went back to the consultant if the dose needed changing and she has done that twice.

She's now changed GPs as she moved. The new one doesn't do shared care so she's paying 60 quid every two weeks.

(She has multiple physical and mental diagnoses and uses a wheelchair).

Obviously she'd prefer to just pay the NHS prescription charge but getting that seems to involve getting re-diagnosed on the nhs with multi year waits, so in the meantime we pay.

We have experience of multi year waits as she dropped out of school due to severe illness and we had to get seen privately to even get investigated. She has an auto-immune condition which requires lifelong meds but thankfully despite the private diagnosis because it is easily confirmed using blood tests all her GPs have been happy to take over the prescriptions.

Exactly as Hollyknight says the consultants are the business. It is certainly in their interests to diagnose people.

ADHD is a rather speculative matter. It's a spectrum condition so it just depends where you put the cut off how many people you diagnose. It's not like there's a scan or a blood test you can diagnose it with. It would not be some kind of registration risking issue to make a few soft diagnoses it's just a difference of opinion.

There's a whole Panorama programme about it.

www.bbc.co.uk/programmes/m001m0f9

I would pay privately if I needed to for something serious for me or my family

When my mum ran out of NHS options for her breast cancer treatment and there were new drugs available that had a good chance of helping but didn't have NICE approval for her age and stage we as a family paid for her to have them privately. She used up all her savings for 6 months treatment. They didn't seem to help much tbh so maybe NICE were right but anyway I understand and have empathy with wanting to pay.

However if you have sought private treatment you can't have an expectation that the NHS will automatically start picking up the tab for ongoing treatment that was started in the private sector. The GP might choose to do that but they are within their rights not to. They are likely to do it if it's a standard primary care medication that is being recommended they are unlikely to do it if it's a secondary care only medication. Otherwise the GP could find themselves being instructed to prescribe lots of strange things that they don't ethically agree with. There are some private practitioners with some odd ideas out there.

A shared care agreement isn't just the consultant writing a letter saying 'GP prescribe that'. It is an actual written agreement saying what each sides responsibilities are. GPs might choose to enter into shared care agreements with some private providers and not with others.

Sometimes GPs refuse to prescribe things that I have recommended as an NHS consultant BTW but because we have a long term working relationship we usually figure things out.

"However if you have sought private treatment you can't have an expectation that the NHS will automatically start picking up the tab for ongoing treatment that was started in the private sector. "

I disagree with this. A lot. Trying to think of a good example. ADHD? Or ASD is a good example? Ok, so some private consultants might diagnose because it's in their interests. But then you want an nhs diagnosis, because it's considered to be the gold standard.

But you should then be able to go back into the nhs. Actually you should be entitled even more, because we've now established that you actually have the condition and need the medication. Can you not see the irony? I can!

You only went private in desperation because the nhs is failing. You of all people should be allowed back in.