Do Scottish NHS boards 'back each other up'?

[52andblue]

I live in Scotland & have had a serious problem with my local NHS.
Plenty of evidence. Followed local process. Got nowhere (even with CAB / MP - mind you, my local MP is a Tory and as much use as a chocolate teapot!)

I am considering moving (because of this, it's an ongoing health issue).
If I move to a different area of Scotland will my files genuinely be looked at afresh?

My local CAB have said I have a genuine cause & suggest Ombudsman, which might get me a 'formal apology' but that isn't what I want. I need a new healthcare trust to look over my old scans & to offer a 'from scratch' assessment- but do NHS Scotland boards simply back each other up ?

I realise that NHS in England has it's issues too - see todays headlines re Maternity 'cover ups' but I wondered if NHS Scotland areas 'band together'?
(I previously mentioned I might move to England & Consultant looked really concerned - despite assuring me nothing is wrong - which was rather strange)

Sorry last reply was for @EricTheHalfASleeve

Please do not let an obnoxious minority of clinicians put you off seeking appropriate investigation and treatment for your son (and also yourself unless your cholesterol is already being adequately treated, you only mentioned a blood pressure med and GTN, and frankly it is a major red flag a woman in her 50s taking fecking angina spray, you want to be living several more decades!)

Seeing someone privately for a comprehensive cardiology workup, and even paying for any recommended prescriptions thereafter should you need to, is much better and cheaper than moving house.

It really, really doesn't matter what the NHS thinks as long as your son gets the care he needs. You can then go through all the processes on your own time to try and get any prescriptions on the NHS, although sadly many people with a wide variation of conditions, of all ages and socioeconomic circumstances, are forced to self fund some or all of their medical treatment.

I take a contraceptive pill called Zoely, which is available free in England but not funded by the NHS in Scotland, so I pay for it rather than go without or accept a less suitable alternative.

You could move to a different part of the UK and then find the NHS lacking there too.

Unfortunately, within a state-funded model of healthcare the objective is not optimal health outcomes for individuals, but to get the patient out of the clinic as quickly as possible with the minimum amount of resources expended on them.

@52andblue I know you said your MSP has not been helpful but remember you have several MSPs who represent you. As well as the person in the seat there are also those on the regional list. I’d get in touch with several and see who can help take forward this dreadful situation on your behalf

@Charliede1182 thank you for this.
Just to update re cholesterol. Mine is 5.7 (ldl 5) Father (exH) is 8.6 (ldl 5.4) whilst on 80mg atorvastatin, his very fit sister is 10.3 (!) Asked him to ask re FH.
Ds is 5.7 (ldl 4.3) but was considerably higher after Myocarditis episode.
I have been cleared of FH. We asked for Ds to be tested & BHF sent a letter we gave to GP last Oct, suggesting Ds be tested at local Big City hospital.
GP referred to Metabolics at local cottage hospital. We were seen 2 days ago.
They said: prev chol readings high enough for FH test, current ones not.
No need for statins. I asked why Ds levels so high as a slim previously fit 21 year old & Dr just shrugged. So, we need to get better advice.

FH can be diagnosed without genetic testing with cholesterol levels that high. It is grossly negligent to see someone with levels that qualify for FH, repeat them and get a slightly lower reading and tell them to rack off. It's malpractice.

You all need to see someone who is willing to take this seriously. It isn't a joke, people with those kind of levels do not have a normal life expectancy, especially males. They have events in their 30s and 40s.

Statins are really cheap to buy privately, however a proper workup would be better. The father and aunt should be on PCSK9 inhibitors as well.

I would do whatever you need to do to see a private preventive cardiologist. Professor Riyaz Patel in London would be my first choice but there may be others closer by.

But FH doesn't increase the risk of myocarditis? Or do you think your son had at MI - which would be very unusual at the age of 19 even with FH, and surely any infarct would show up on a cardiac MRI.

If you want to exclude FH and he doesn't fit the NHS criteria for testing (which exist for a reason, genetic tests are typically a few hundred pounds) then pay for it privately.

@EricTheHalfASleeveI do not know if Ds had an MI. 'Query MI' was across his notes in High Needs. They eventually concluded 'suspected' Myo as the scarring pattern (basal, sublateral)is more consistent with Myo pattern than MI I believe? BUT they didn't (& still don't) have much of a clue why he is still not well. 8 believe it is because he was not given anti inflammation drugs (so ofema continued on MRI fir over 13m, leading to more scarring).

Sorry for typos.

In any case, the whole thing has been odd.
GP should have checked Ds for FH last year. I'm aware it's not linked to Myo but, given his heart is already damaged we don't want untreated cholesterol issue too.
The refusal to share info (GP says: 'we don't have to adhere to GDPR if we are busy') & Hospital will not share scans (or even show)
Finally, when we were given 15mins with another HCP to see scans they compared them to Google images on phone & said: 'not rhat bad'. Same person says Ds must do intensive gym program as deconditioned, yet repeated changes to ecg are due to 'athletes heart'. This HCP seems so keen to back up rhe opinion of original Cardiologist (his boss) about whom we made a formal complaint, that hehS suggested he & Ds go for 'Sunday exercise' together. Nothing is 'standard care.

European Society of Cardiology guidelines focus on managing any associated heart failure or arrhythmia in myocarditis - anti-inflammatories are mentioned for pericarditis then tapered off short term.

https://www.escardio.org/guidelines/clinical-practice-guidelines/guidelines-for-patients/

@52andblue is it ok if I private message you?

@EricTheHalfASleeve so what is recommended for reducing odema in Myo?
what is recommended for 'managing heart failure' (presumably at least being able to assess and record ejection fraction so you can judge level of H/F?)
what is recommended for 'arrythymia' (presumably holter monitors/meds?)

Ds was given 1.25mg Bisopralol. And told to see a Psychiatrist as his Autism was meaning his experience of his heartrate being recorded at 160bpm & his arrythymias (caught on a private holter we paid for) were 'anxiety'?

@HealthyChoicesHard Yes of course (thank you)

I'm not a cardiologist - can only suggest you look for someone specialising in myocarditis to try and work out whether current symptoms are related or not, and get an update on current cardiac function. You've already seen a private cardiologist - what was their opinion? If the only diagnosis made was POTS that suggests they weren't concerned about cardiac functioning.

@EricTheHalfASleeve We did consult a senior NHS Cardiologist who had concerns about the tests & the interpretaton of them done so far (he saw the write ups but not the actual tests). He also diagnosed POTS. He wrote to our GP & Cardiologist but they both ignored him. BHF have also told us that standard procedures have not been followed (but of course cannot say why)

Hence my original post asking, if I moved to a different area in Scotland, whether tests would follow, if they would be looked at afresh if so, or if new ones would need doing (if clinically necessary)

I wouldn't move in the hope of getting better treatment from the NHS.

Remaining in your home and seeking private investigation and treatment is a lot less expensive, risky and disruptive and puts you in control of which doctor you see and which treatment you access.

You could go to all that expense and hardship and then find them equally unhelpful in the new area.

You can however ask to be referred to a specialist in England on the NHS if none suitable exists in Scotland.

I live with severe dysautonomia (POTS is also a form of dysautonomia) and there is only one specialist autonomic clinic on the NHS at the National Hospital for Neurology and Neurosurgery in London.

I have had NHS referrals to both Professor Julia Newton's Syncope clinic in Newcastle and the NHNN in London (Queens Square). The former helped me get a prescription for fludrocortisone and compression tights which remain valuable aspects of my treatment to this day.

Unfortunately neither identified that I had an untreated CSF leak from my barotrauma injury, and I did not derive any clinical benefit at all from the NHNN but I know they have helped a lot of other patients plus the documentation from there may additionally have contributed to me receiving tier 2 medical retirement and associated disability benefits.

I would say that any clinician you see now is going to be primarily interested in what is happening now - they can't answer some of questions about whether the right thing was done in the past as they weren't there. It's very hard to work out from incomplete medical notes what happened several years ago - unless you are getting medicolegal opinions it's not a very helpful strategy. If someone comes into my clinics and starts saying 'well this Dr said this and then this Dr said that' I try and divert them back to what their actual problem is - an argument on a ward round 2 years ago isn't useful information.

I'd hope you had a detailed clinic letter from the cardiologist you saw privately - the important points there are whether there is current cardiac dysfunction, are further tests needed. I don't blame a GP for not wanting to prescribe an unlicenced drug for POTS - the GP is legally responsible for their prescriptions, not the private Dr.

People can usually get copies of an MRI if you request formally via the hospital it was done at - may have to pay a small fee or sign a form. But be aware radiologists and specialists may not agree on scan interpretation, and image quality may vary.

I would say that any clinician you see now is going to be primarily interested in what is happening now - they can't answer some of questions about whether the right thing was done in the past as they weren't there. It's very hard to work out from incomplete medical notes what happened several years ago - unless you are getting medicolegal opinions it's not a very helpful strategy.

This was my thought too. Anyone you see now is going to be more interested in what the current situation is and what needs done going forward, which is the most important thing.
They are unlikely to give you much of an opinion on things in the past because they weren’t there and won’t know the reasoning behind the clinical decision making at the time.

@Maviaz Yes, I agree. What needs looking at is the current state of health.
But it's important that the records travel with the patient so that the new GP & Cardiologist know, eg, which areas of the heart are scarred and by how much.

@EricTheHalfASleeve see above reply to @Maviaz

I would not be asking about 'an argument on a ward 2 years ago' I was just trying to explain (here) that there was not agreement in 'the team' at the time re a diagnosis or treatment. In fact, the formal dx of Myo took months to give.
Meantime Ds was being told it was 'all in his head' due to him being autistic.

Our formal complaint & request for a 2nd opinion in a neighbouring health body was handled by the Cardiologist we were complaining about. It was rejected.
The whole thing stinks but I am more interested in a fresh unbiased opinion of current health needs than getting evidence for a medico legal argument.

The GP refused to prescribe drugs for POTS even after local NHS Cardiologist finally caught up with the private opinion & directly asked the GP to prescribe.

Re copies of tests. GP says they don't keep copies, all copies kept at hospital. We have applied for copies & been given some but they are so blurry it is hard to see that it is a heart that you are looking at never mind which part. A junior Cardiologist in the Dept said that 'tests are poor quality' as did the Radiologist.
However, we have been told that Ds has permanent scarring on at least 2 ares of his heart so it is important that they transition to any new HCPs. It may be that a fresh MRI needs doing. Certainly our local area suggest another 'in 5 yrs time'.

Do you know why all the notes are so heavily redacted?

you can only refuse to release info on the basis of the Serious Harm Test, which means releasing the info is likely to cause serious physical or psychological harm to the patient or a third party. How would this apply to cardiology notes??

I wondered about notes redaction too - that only usually happens when there is information about another person present (so in emails or handover sheets there could be info on multiple patients, or there might be comments on the family in paper notes).

Honestly - if the private cardiologist diagnosed POTS then they have not diagnosed heart failure or another structural problem. Which suggests there is no evidence of any consequences of the myocarditis causing his current symptoms.

GP notes heavily redacted. Hospital ones less so but still some redactions & alterations. Private Cardiologist did not have access to multiple MRIs that NHS did, only the write ups. Rhey commented that the Radiologist noted quality was poor & that they'd been reported to different protocols and not interpreted by a qualified Cardiologist. I cannot afford a private MRI. Locally, they suggested a further one in 5 years (we did not ask). Ds heart may be functioning normally at present but it is no longer structurally perfect due to the extensive scarring. If you've had Myo 9nce (if it was, and they've no idea why if it was) you are more likely to get it again. Hence, if we moved area it would be helpful for previous scans to come but for a qualified NHS Cardiologist to review them (re scarring)