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)

bump

Honestly, the NHS Scotland health boards aren't joined up enough to back each other up. They are very unlikely to transfer files between each other. You will probably need to start the whole process again, which sounds like what you want.

I’m not quite sure what outcome you want from the “from scratch “ assessment. Is it something you are looking for treatment for but your local NHS board doesn’t agree to treat you?
Treatment pathways for conditions tend to be agreed nationally. Having said that, there can still be a bit of a postcode lottery so you’d need to do your research through online forums and find the guys that treat this condition if that’s the issue here.

NHS records stay with the original health board and anything would have to be specifically requested by new health board to transfer over.
However GP notes transfer so if a new GP was referring you to a new consultant they will have the history there to detail in the referral. It is likely that a new clinician would do their own assessment and come to their own conclusions

@helpfulperson Thank you. I expect that's correct that different boards are not organised enough to 'join up' against someone! My local board refused - 'by routine' to accept a scan done at a neighbouring A&E just recently as relevant.

@Maviaz our situation is that a family member needed emergency cardiac treatment. Told 'cured' but clearly is not. Moved to Uni. Before had chance to change GP etc had a scan at Uni town A&E and told scan showed 'chronic changes to heart'. Unwell enough needed to move home again. Home NHS say that scan was 'wrong' & it's all in his head. Local PASS helped to make a formal complaint & request a 2nd opionion. Denied. PASS suggest legal action as Ombudsman locally on a 'go slow' (we've 8m left & they take 6m to even reply)

So, yes a 'fresh start' might be helpful but equally we would like the scans that have already been done to go with us, whereever we move in Scotland (even if we went to England?) Surely that's the case, especially if complex history?

So a new consultant could request the scan from the original hospital. The GP should also have the report from the hospital and GP notes transfer with you wherever you go in uk.
Did your family member see a cardiologist when he had the original scan or was it just A&E Dr?
I know someone who was told scary things about their heart following a trip to A&E. When he saw the specialist they interpreted things differently and it turned out to be not nearly as serious as A&E had inferred!
But if I understand correctly the issue your family member is having is that the specialist is saying there’s no ongoing treatment needed? Or are they refusing for him to see a specialist?

@Maviaz Sorry if I'm not being very clear. Thank you for trying to help.
My 19 y/o went into heart failure. Local small hospital didn't know why: 'probably Myo/Pericarditis but not sure'. 5 days in High Needs. Then told 'better' but total of 4 cardiac MRI's have been done (none read at the hosptial as no one qualified but Radiologists say heart still inflamed & extensive scarring nearly 2 years later). Told it is because he is Autistic he is not 'getting over it'. An ecg at other A&E (checked by Cardiology) showed chronic changes to his heart.
Have obtained notes (full of redactions) & electronic copies of scans (blurry).
I'd like a new area to be able to see all existing scans & do new ones if needed.
(we'd go to the Spire but were told that they cannot access NHS scans)

My 18yo was diagnosed with acute pericarditis last year. Very unusual for their ages tbh. Not a condition you hear of regularly, especially getting an ECHO at these ages is incredibly unusual which is probably why you're having problems with this case. I don't think anyone knows enough about the causes although our family GP has seen several cases of acute pericarditis linked to young people of this age group possibly associated with the COVID19 vaccine complications.

Hope your DS is recovering well OP. Sorry I don't know how to answer your original question.

Gosh what a worrying time you’ve been through @52andblue
In your case I think a new clinician would want to start with a fresh pair of eyes because the important thing is how your family member is now and what can be done going forward. The fact you have the reports of the scans will be helpful but a new consultant will likely want up to date tests.

Like a PP I wondered about covid vaccine or COVID itself if it’s a young person. Could he have long covid? Has he been offered any kind of cardiac rehab?

Im curious about all the redactions in his medical notes. Redactions usually only happen if the information is to do with a 3rd party or its thought harmful for the patient to hear

Surely it would cost less to get a second opinion privately than moving house, to a different part of the UK?

@Charliede1182 we got an opinion from a senior NHS Cardiologist privately via Spire. Both GP & local Cardiologist refused to accept it as it was 'not based on scans' (which they refused to share). We paid for a 48 hour Holter monitor which showed evidence but its been ignored by local NHS.

@Maviaz He got Covid in the October. Badly enough to come home & stay home from Uni. Felt 'not great' over winter (assumed a bit depressed but later said had a 'twangy chest' on & off). Had violent vomiting (& later told me chest pain) at 3am in the July. Went into A&E next teatime & Troponin was 2,500. Told 'we don't know what it is, not a heart attack as he's too young'. Next day, T = 5.5k, told 'in heart failure'. Moved to High Needs but 3 Cardiologists argued amongst themselves at end of bed. Senior one, won out & very little drug treatment given & no Cardiac re-hab available. Since, told fully recovered & all Psychological due to his ASD. However his MRIs showed Inflammation for nearly 2 years & still scarring on his heart. We've asked for precise figures but been told 'not available'. His notes are heavily redacted. No 2nd opinion is available. Next option Ombudsman but local PALS say this will take months. Only option is to move as private opinion refused - GP actually accused us of 'dangerously ignoring medical advice' (! - we never have).

But, if moving doesn't give us access to 2nd opinion on original scans / chance of new scans if needed - hope not he's been through enough- - then I don't know what to do?)

My only experience is that DS1 dislocated his collarbone playing rugby in an away game and went to A&E in one NHS area and was advised to go for follow up in his home area, they were able to Phone NHS Forth Valley but not send his X- rays promptly, apparently communication between boards is ropey.

@user1476613140 Im sorry you've been through difficulties too. Our experience is that they didn't have a clue why he was in Heart failure aged 19 (or, what his ejection fraction was evwn)
No one at the hospital qualified to read MRIs but they did 4 over 18m (2 sent away to be read under a different protocol so not comparable). He's been left with permanent heart scarring. We were shown a Google example on Cardiologists phone, then a (blurry) pic of Ds heart & told: 'it's not as bad as phone pic so you don't need to worry, but we'll do another scan in 5 years time'. Awful.

That doesn't make sense as all imaging in Scottish NHS goes onto a national system. We can't always see the local reports or some aspects of complex nuclear medicine source data but absolutely can see an Xray from another Scottish NHS site if the computer has the right software. Private scans are a pain as they usually don't share the images so you just have a report. Interpreting images is specialist and a general radiologists opinion will often be superseded by a more specialist person. Outsourced reports often over-call abnormalities or are sometimes just rubbish quality.

To be honest if someone had serious pericarditis I wouldn't be surprised if they had persistent ECG changes. What's the OPs clinical question?

@EricTheHalfASleeve Maybe it was just a glitch that day, it did happen at the weekend.

What a nightmare, that's horrific.

I would recommend you look into Dr Boon Lim, private cardiologist in London working at "One Welbeck" clinic.

He saved my life, advocating for a pacemaker for me when my local NHS (Lothian) had given up on me, basically telling me to go away and spend the rest of my life lying down and stop bothering them.

(I have severe dysautonomia following a brain injury and could barely sit up without fainting, awake heart rate in the 30's/low 40's).

I didn't need a referral, I just contacted Dr boon lim's clinic myself and they do online video consultations.

Whilst far from a cure, I can sit up comfortably now and walk as far as I want, although I will never be able to stand in one place.

I truly hope you can get the help you need.

@Charliede1182 I am so sorry you have had such problems - but very glad you are making progress now!
Can I ask, did your local area accept Dr Lim's recommendations, or did you have to fund the pacemaker yourself?

We saw a senior NHS Cardiologist via the Spire. He said he couldn't access the MRI's to assess the Myo damage (but said the two paper copies we showed him had been reported to differing protocols & therefore couldnt be compared)
He did additionally diagnose PoTS (stand test plus a 48 hour Holter monitor) & prescribed Ivabradine. He wrote to NHS Consultant who then refused to prescribe it. After 6m he eventually agreed. GP then refused to prescribe it too.
It's been a real nightmare tbh. LOTS of redactions on both hospital & GP files.

@EricTheHalfASleeve (sorry replied 1st then lost post, will try again..)

Clinical Qu's:

At the time (so still outstanding):
Why did they discount a heart 'event' when Troponin so high & classic 'attack' symptoms? (strong history of CAD in family & Ds Cholesterol 7.9, LDL 5 @19). They simply said he was 'too young for a heart attack but didn't know why in heart failure'. What was his ejection fraction when 'so very ill'? Why was contrast MRI only reported by a standard radiologist 2 weeks later (no one at hospital qualified). Why did Radiology confirm cardiac odema yet Cardiologist denied it?

Why have a total of 4 MRI's been done over 18m if NHS convinced patient is 'cured, all psychological'. Why is another planned in 5 years? (either he is better so it's not needed or he is not & 5 years is too long to wait? I spoke to BHF & they said they thought either they are not confident of dx or scanning equipment is poor / no one can read properly as 'too many scans for normal with this dx'.

Currently:
Exactly where is the scarring (it seems over the whole heart from what we could briefly see? But how deep is it? What are the possible consequences ?
Why did patient never receive any rehab, after being asked about: 'history of sudden death in family' & told: 'you are extremely ill indeed'. Within 6 weeks being told: 'all in your head, just go to the gym' Yet, probably because still fainting, vomiting, chest pressure & pain, more MRI's are done.

Patient will be 24m post event come summer. No normal life as yet.
Told: 'go to gym, arrange CBT'. Yet still on Cadiology List & MRI in 5 years.

Why, after a formal complaint, was our appeal for a 2nd opinion presented to the Board by the very person we complained about? (they wrote to us saying they'd not been given much evidence' but Denied our request & no appeal avialable)

Yes they did grudgingly accept Dr Boon Lim's well written expert letter requesting a pacemaker. I have a specific type of pacemaker called CLS which produces an almost physiological heart rate rather than a flat rate like most models.

If I hadn't been able to get it put in locally I'd have had to go down to London and pay for it, and I think because the local NHS hospital would then have had to do my follow up and annual checks anyway, they just conceded that it would be better if they did the procedure.

The cardiologist in Edinburgh was very disparaging and didn't think it would help. I believe that taking my husband to the appointment helped, he just sat there 6ft and bearded and didn't really speak, but I do find (and hate that it's the case) but taking a man to appointments really makes a female, child or otherwise vulnerable patient less likely to be dismissed.

I was also diagnosed with POTS at one point which was incorrect in my case as my heart rate was mainly too low, not too high, but only checking it in a hospital setting where I had extremely traumatising experiences, of course it is going to be high then.

PS I've just seen your other post above.

Your son meets the criteria for familial hypercholesterolemia (FH)

This may or may not be related to his current issues which seem to be related to post COVID cardiomyopathy, but cannot go ignored.

Please, please, get him seen by someone competent. If not Dr boon Lim then another private London specialist.

Additionally, familial hypercholesterolemia is autosomal dominant so either you or his father will almost certainly be affected.

I don't want to frighten you but this is really important.

Regarding the fainting and vomiting, whilst I can't give medical advice online it would be worth looking into fludrocortisone and/or midodrine.

I too had intractable vomiting in the first months following my brain injury which was unresponsive to all human licenced antiemetics, however I was helped greatly by mirtazapine which has a veterinary license for nausea and vomiting.

In humans it is only licensed as an antidepressant, however the upside of the "all in his/her head" school of medicine is that it is relatively easy to get prescribed.

@Charliede1182 Thank you - I managed to get tested for FH last summer (as after chest pressure & pain, my BP was 208/110, pulse 52, chol 7.8, ldl 5.00, triglycerides 3.8. plus Pericarditis') My FH test was negative happily & I'm now on BP meds & GTN spray (same Cardiologist decided I 'probably did' then 'probably didn't' have Peri, a heart murmur, or Angina. Currently think 'possibly indigestion or mobility related'. I think he hasnt a clue?) My exH has Chol of 8.6 (after 2 yrs on 80mg Atorvastatin). I keep asking him to get tested- no dice. GP won't test son as 'he doesn't need anything else to worry about'. PALS say I should see a lawyer re advice on medical negligence. I just want an expert to look at his MRIs, or, if my area won't release them, do another. But I KNOW they would refuse outside opinion, just like they are refusing a 2nd opinion. It's a wall of denial.

If you (mother) are negative for a genetic mutation then your son cannot inherit that mutation from you because you don't have it. Obviously that doesn't prevent your son having a new mutation (but that means the family history is irrelevant), and genetic panels can't test for everything as there will be as yet undiscovered mutations out there.

A lot of your questions about 'why did someone say this at this time' are unanswerable. It's unlikely someone who wasn't present at an event can explain why/how/when things happened or were said - they might be able to make an educated guess but that's it.
Some of the technical scan questions only a specialist cardiologist with access to the original scan or a specialist in that imaging technique will be able to answer.
Reports often do vary & I'd usually take the opinion of a specialist over a generalist, and am now quite paranoid about the quality of outsourced reports after seeing some shockers (missing obvious abnormalities happens but over-calling minor changes is actually commoner in my area and just as problematic).

Why didn't he get rehab - well cardiac rehab is really designed for your classic older adult who's had an MI. I'd guess the clinician didn't think it would be much use to a young adult after myo/pericarditis?

I would also guess that whilst they are pretty confident this was a one off they are offering a follow up cardiac test as a safety net (& influenced by him reporting on-going symptoms)

Your current questions should be: was the diagnosis correct, are his current symptoms cardiac or not, is there any permanent cardiac damage, what's the prognosis if so.

Even without a specific mutation, the levels of cholesterol in this family warrant really aggressive treatment under the care of a specialist.

I would definitely have a consultation with a private preventive cardiologist.

The NHS policy is to ignore hyperlipidemia until the individual either has an end stage event or is deemed to be within the prodromal decade of one.

Statins are pretty cheap to self fund if you end up having to pay for it yourself, however additional lipid lowering therapy would also probably be recommended if the response was subtherapeutic.

A 'follow up' test in 5 years seems pointless?
I mentioned the family history of CAD as it is extensive & his treatment was on that basis. (I was only told 'negative FH' very recently, his Father's side is CAD history too & higher cholesterol)
We have not been shown his scans by / been able to ask questions of anyone who is qualified to read them.
So, yes, I am unconvinced of the diagnosis.
3 Cardiologists stood & argued at the end of his high needs bed. The Lead one who advocated 'watchful waiting' won out, hence very little treatment (1.25mg Bisopralol for 18m whilst still symptomatic, Radiologists reporting odema & Cardiologist saying 'not sure why scarring increased on scan')

He is still symptomatic. We know he has permanent (extensive area) heart scarring but we don't know how 'bad' it is / prognosis.
His files have redactions. We've been refused a 2nd opinion. Refused any treatment for his Cholesterol. Initially refused treatment his POTS (dx by NHS Cardiologist via Spire).
And this is all attributed to anxiety / ASD.

The whole thing isn't right.

Because private intervention (re POTS) was not only refused but quite aggressively, I don't feel confident about seeking further private opinion, hence me asking about moving area (although I'd rather not have the stress & £)