Private vs NHS dx & meds - how do handle the 'ettiquette' please?

[medianewbie]

Ds has had poor experience with local NHS Cardiac Consultant.
(currently suggests 'watchful waiting' when Ds MRI show clear deterioriation)

So we went to see a private Consultant. He couldn't comment much on that part as no access to MRI scans (diff health board & ours 'don't send out of county') but did suggest we ask GP / NHS consultant for THE standard med (which I'd researched & thought Ds should have been on from the start). He said that he couldnt instruct NHS consultant or GP but 'ask & it wont' be a problem' (it will)

He also dx POTS & prescribed meds, & said we should stop NHS med & start his med for PoTS. I was given a handwritten letter ('typed to follow') but I can't get a GP appt to turn this into a prescription. Do I go back for a private one or just hand into GP REception & hope for best? (time short for Xmas hours now)

I thought we should write to NHS Consultant to advise we'd been to private?
He wont be happy - he'd said it was all 'in Ds head' & did a Psych ref (no ref to this in his covering letter re the worse cMRI results I notice!) I don't want the relationship to deteriorate as we need the further MRI in Feb but I DO want the 2 new drugs for Ds meantime rather than 'watchful waiting'?

Why do you think you know best, OP? Maybe the NHS consultant is correct, and the private one is wrong! You are in danger of turning into a "heartsink patient" (I'm assuming your son is a small child, otherwise there is no need for you to be so involved).
A less combative approach to any/all medical staff would be a good start....

So this can be complicated.

Some drugs a GP can prescribe. Some drugs only a consultant can prescribe, but GPs will issue repeats.

It's probably worth speaking to reception in person at your GPs to find out which category the drugs fall into.

If GPs cannot prescribe the drugs you'll need to get a private prescription. You probably don't need to see the private consultant again - if you ring his secretary they will probably be able to sort it.

It can get very complicated if consultants disagree.

So the private consultant is suggesting a complete change of meds when he hasn't seen the MRI? That is bordering on dangerous practice.

Who read the MRI originally and told you about the deterioration? Is "watchful wait" ever a course of action with this condition? Because weighing up the risks/benefits of a (potentially hostile) drug might mean that best practice is actually not to give at first signs. What are the NICE guidelines?

It's hard to get a privately prescribed course of treatment transferred to NHS - and deliberately so. It's set up that way because as a matter of policy (since its inception, and strengthened by Labour in the 1970s - not a "nasty Tory" issue for once) because of the vision that it should not be a two-tier system, and people should be unable to queue jump.

So your best bet is to continue in the private system if you want to follow the private doctor's treatment plan.

@Cynic17 My Ds is 20. He has ASD & SN I'm his DWP appointee / have NHS permission to help him with medical matters. His NHS Consultant said he had recovered it was all in his mind & ref to Psych. The MRI shows in fact his condition has deteriorated since prev scan in July. NHS Dr suggests 'waiting'. Ds can barely get out of bed (6m now, scans getting worse). He cannot advocate for himself & our experience has been very poor indeed.
The private Dr said he should have been on an anti inflammatory from when he was in heart failure (in July, from Myocarditis). So, I wanted to raise this with NHS Dr. Ask opinion. Private Dr has prescribed a diff med for POTS. The current NHS med (1.25mg) the NHS Dr said 'you can stop anytime if you like'.

@Octavia64 thank you, that's practical advice. I agree re Consultants 'disagreeing' so I've drafted a very respectful letter to NHS guy to say private guy agrees re main issue but detected a side matter for which a med might help Ds feel better whilst we wait for next NHS scan main issue.

When DD needed tretament and our GP wasn't prescribing what I felt she needed we saw a Private Gynae. I didn't tell her my opinion but she said that she wanted DD on the medication I thought she needed .
The Consultant wrote to our GP who refused to prescribe, I called the Consultants Secretary and the Consultant then phoned our GP. We then had a call to say that they would prescribe after a consultation with the Practice nurse, which we had and they did. Our GP has tried to switch DD back to a cheaper alternative (that didn't work) on a few occasions when a new prescription is needed but backs down if we push.

I'm a GP. I would expect the private consultant to do the first script as a minimum (same as NHS) and for you to cash that - if it is a usual medication, that would be prescribed on the NHS and doesn't have any complicating factors such as needing shared care, we'd then take over. But if it's not something given in the NHS, might need to continue being private. In any case, get the first script from your private consultant.

It is completely unprofessional of your consultant to expect the GP to do the first script, and to do it on the basis of a handwritten letter.

It depends what the drugs are in terms of moving them to the state system.

I have a serious long term disability and my GP is generally happy to prescribe once I have a private prescription.

My drugs are relatively common ones that are standard for my types of condition though.

At various times I have been seen by nhs consultants and private consultants (sometimes the same person).

Ime nhs consultants are often overwhelmed with sheer weight of work and it is easy to get lost in the system.

If I have problems developing with meds (need upping or changing) I get reviewed privately as nhs medication review for me would be a couple of years wait.

Do you know what the medication in question is? And does the private consultant also work in the NHS? Are they on the specialist register for their specialty? Are they mainstream in their opinions?

@nfk my health area 'doesn't share scans'. My NHS Consultant can't read a gadolinium cMRI. Last time no one in area could so it was sent out of area. This time the correct radiologist was back. What we now have is 2 paper 'write ups' (using different protocols). Even so, NHS guy says Ds heart has more 'inflammation or scarring' & an 8% lower ejection fraction than in July. He suggests 'waiting' until Feb. It appears Ds also has post viral POTS, which explains pain, fatigue & high heartrate that NHS Consultant insisted 'is not cardiac'. I would prefer a 2nd opinion in the NHS but, in my area, your initial Consultant has to give permission. 'Our' guy is head of dept about to retire, so no chance.

You are entitled to an NHS second opinion and your consultant can't block it. Just ask your GP to refer.

@Tubetrain (I'm under the Scottish NHS) & that's not how it works in our area.

@Tubetrain - I was given a handwritten letter & rhe written letter will follow. The medicine is Ivabridine.

@Tubetrain (sorry, working backwards in the reread to answer Qus). Yes private Consultant also NHS (next authority across).

That's not GP initiation. Consultant definitely needs to prescribe and review until the patient is stable, so probably first few scripts.

Yes it is

https://www.nhsinform.scot/care-support-and-rights/health-rights/communication-and-consent/communication-and-involving-you/

"You can ask for a second opinion at any time during your care and give preferences about future treatment"

https://www.healthworkerstandards.scot.nhs.uk/Documents/NHSandYou.pdf

https://www.nhsggc.scot/patient-visitor-faqs/health-rights/

Mt GP practice is awful (tried to refuse a med that NHS Consultant & MRI dept both recommended to relax a disabled dx Anxiety patient prior to a gadolinium cMRI). It took me 6 calls & 2 emails to get it. So, I do expect issues with the 'new meds'. I think what I'm asking is: do I write a nice letter to (disinterested) NHS Consultant to say: 'this has been suggested, what do you think?' & hope he agrees, calls GP & sorts it ( unlikely before Xmas so poss long delay?)
I should say that NHS Consultant was happy for us to continue or stop the 1.25mg Bisopralol Ds is on when discussed 4 wks ago (Ds still on it atm). OR I can call Spire & ask for private prescription (do I just take to chemist?) I'll still write to Mr NHS out of politeness (& Spire will write GP)

@Tubetrain - Thank you re 'not GP initiation'. It sounds like what I should do then is write to NHS Consultant & ask his opinion/ would he prescribe?
(rather than get a private script which might annoy him?)

Thank you also for your links re '2nd opinion'. I am rural Scotland. I asked for a 2nd opinion in Feb (re my foot which my Consultant, willing to do surgery pre Covid, now won't touch). My local hospital complaints told me I have to have the permission of Consultant #1 for 2nd opinion. My GP said the same.
It's really helpful to have this info x

So if a consultant has requested an MRI and thinks that the patient needs a sedative, it is 100% on that consultant to prescribe it. That's in all the guidance and your anger should be directed at the consultant for not doing it, and sending you on a wild goose chase to the GP.

If you can afford it I'd just get the first few scripts from the private consultant, who you then go back to for any issues, adverse effects etc.

I would ask the hospital team for the evidence for that. I suspect they don't have it. good luck.

You'll be lucky if your GP will prescribe Ivabradine. There's a long story, which I'll leave out as it's not relevant, but mine point blank refused to even entertain it. I eventually found a different combination of meds that worked better for me (also for POTS) so fortunately only had to fork out for it privately for six months or so.

@Tubetrain OK thank you. I'll pay for private scripts if I need to as Ds so ill but I cant go over entirely to the private system as I defo can't pay for a private cMRI from Carers allowance. I don't want to offend the NHS guy either so I think we should write to him as he will have Ds ongoing care re Myo. The POTS is a different issue (but still involves heart rate so not going to stop NHS med & start a different one without his knowledge/ permission). It's just a different part of a 'jigsaw' of working out what's happening for Ds so I hope he responds positively.

Good luck, it's difficult to negotiate this stuff.

You cannot mix and match to suit you. If a private professional prescribes a drug, you pay for a private prescription and the meds.
You want to jump the queue and get a 2nd opinion by paying, you should be prepared to pay for treatment.

There’s nothing combative about seeking a second opinion. Tradesmen vary in quality, experience and judgement - so do doctors. There’s nothing special about them. It’s very common to get different opinions.