(Medical negligence?) / PALS type advice please?

[medianewbie]

Long story short (hopefully)
My Autistic 19 y/o was admitted in A&E in Heart Failure last July.
Stayed High Needs for 5 days then discharged diagnosis of PeriMyocarditis.
He remains ill. His Cardiologist (elderly, small local hospital) kept him on 1.25mg Bisopralol only for 9m. He refuses to show us any scans, to discuss treatment except for telling him it was Psychological re 'your emotional background / your Autism' ( & ref to Pscych!) Meantime 2 further MRI's showed changes to heart.

We have taken advice from PASS (Scottish equivalent of PALS) They seemed overwhelmed & suggested Ombudsman/MP all of which would take time.

Ds has a 4th MRI due on 8th August. This is needed as 3rd still showed inflammation & scarring (but our Cardiologist cannot read MRIs & doesn't inc Radiologist comments in his summary letters). He is still really ill every day.

There is also strong family history of Hyperlipidemia / high cholesterol. Ds 7.1 ratio, LDL 4.9%, Ds Dad 8.9% ratio, 7% LDL , angiogram for atheroma, statins,
I've just been referred to LIpid clinic as I was admitted with chest pressure/ pain last week & dx Pericarditis, Hyperlipidemia (7.1 ratio & 5 LDL) & Hypertension. BHF helpline nurse says need genetic screen as Peri in 2 1st degree relatives in 12m quite unusual. Our GP is good pals with Consultant (redacted emails)

I was really hoping that the PASS person would advise but all they have done is look at our complaint letter and 'correect the grammer' (no advice at all)

Would you take the 4th MRI after the last 12m experience - it seems inadvisable to halt a care plan whilst arguing about a Complaint, however well justified -
OR wait for the possible MRi in the next county (in a few months?)
OR go to MP next week?

I've put 'medical negligence' in my title to emphasise how bad the treatment has been not that I'm about to rush off to a lawyer - I'm too ill myself at present.

Take the 4th MRI. Even if you change consultants or hospitals the imaging will be useful.

Is the consultant suggesting it’s Takotsubo syndrome which is cardiomyopathy caused by extreme stress?

@PandyMoanyMum Thank you for replying. That is my instinct. But I know from experience that my health authority uses different protocols for things & will not accept eg an X ray done in neighbouring health body so they are a bit odd. Also, the copy MRI's we were sent online were really poor quality. It may be a tech issue but they were really blurry/ edges cut off/ so poor I was amazed.

@PandyMoanyMum No, just made a referral to Psychaitry last Oct. Nov & Feb MRIs showed further deterioration / continued Myo. Consulant is visibly uncomfortable Ds Autism (odd as he is quite 'high functioning' & says: 'Psych'.

Sorry, posted too soon ..
Consultant (who is head of team of 3) is visibly uncomfortable re Ds Autism.

There is only 1 hospital in my county (rural Scotland) Next again one is 40miles away in different county. I asked PASS if we could request a 2nd opinion outwith Scotland but they didn't know (or how long it might take/ what the process is. Again there is no alternative person to ask as just them & their new trainee)

Have you discussed with your GP? They could refer you out of area for another opinion?

@Newnameformenow

GP won't help (failed to respond to urgent email from Consultant & let Ds' meds run out, amongst other things) so PASS suggests a Formal Complaint against GP which we are doing once we receive copy of Ds notes (apparently some are 'lost'' so it's taking ages?).

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I don't know how it works in Scotland but regarding the radiologist reports in England you can request copies.

@Snowangel23 thank you. we requested Ds notes. This included his MRI resutls. They are unreadable (blurry, cut off etc). We do not know if this is because they are like that in their original state (surely not) or because our tech doesn't co-ordinate with NHS tech (much more likely) But we cannot read them.
The Radiologist reports say eg 'continued likely odema in T2 area. likely continued Myocarditis'. Consultant writes up: 'recovered, needs Psych'.

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Have you contacted the ICC team in Edinburgh yourself?

@slosd No. I did call & speak to the BHF helpline. A genetic nurse emailed me a letter to show GP, suggesting referral to Edinburgh. I saw GP (to ask to go back on my prior HRT, on advice of Cardiac nurse when I was on ward) but GP quite dismissive ('you don't have any cardiac issues at all, just a bit of inflammation). I didn't know I could contact them directly. Thank you.