Care home resident survived covid but died afte... - Thyroid UK

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Care home resident survived covid but died after Levo error

charliecooper profile image
35 Replies

Hope this link works

bbc.co.uk/news/uk-wales-612...

In case it doesn't:

An 87-year old who survived Covid, died after her routine medication was not restarted, a coroner has heard.

Nora Foulkes suffered from hypothyroidism, but her routine treatment was stopped when she contracted Covid in December 2020.

She died from cardiorespiratory failure in April 2021 at Glan Clwyd Hospital, a post-mortem examination revealed.

Failure to restart the drug when she returned to her care home contributed to her death, the inquest found.

John Gittins, senior coroner for North Wales has written to Betsi Cadwaladr University Health Board about the failure to restart the levothyroxine medication, which had been agreed at meetings between Advanced Nurse Practioners and her care home.

Betsi Cadwaladr University Health Board has been asked to comment.

The coroner has also published a Prevention of Future Deaths Report following the inquest.

"There were multiple opportunities for this error to be spotted and corrected but this did not happen because there was no consideration being given by the ANPs to the patient's medication regime," Mr Gittins said.

The coroner was told Advanced Nurse Practitoners had been involved in Ms Foulkes' care on six occasions.

The fact that she had not restarted the medication was missed each time.

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35 Replies
RedApple profile image
RedAppleAdministrator

Absolutely shocking!

Not to detract from the horrifying story, but the article has a photo of a non UK brand and dose of levo (Mylan 88mcg is I think a US medicine).

From the Coroners report linked to in the BBC article:

A subsequent post mortem examination established that she had died due to cardiorespiratory failure which was the result of a bronchopneumonia and an existing cardiac condition but that her untreated hypothyroidism had been contributory to her death.

The Cause of Death being recorded as 1(a) Cardiorespiratory Failure, (b) Bronchopneumonia and Ischaemic Heart Disease 2. Dementia, Hypothyroidism

judiciary.uk/wp-content/upl...

helvella profile image
helvellaAdministrator in reply toRedApple

You are absolutely right. Mylan supply several markets, but the NDC code clearly indicates it is a USA product.

I think that this could be partly due to the attitude which considers hypothyroidism a trivial disorder which just needs a daily tablet. And, as we mostly know, a few hours, or a day or two, without isn't that big an issue. But it is by taking it as a serious condition, and considering that the medication is critical, that it will more likely be dosed properly.

It makes me think of the once-a-week dosing that has been discussed specifically in relation to district nurses visiting only once a week. The attitude of "that will do for hypothyroidism" undermines the treatment of all of us - from oldest and most infirm to youngest and strongest.

jimh111 profile image
jimh111

Dreadful. I'm not sure why they should discontinue levothyroxine if they think the patient is about to die. I can understand stopping invasive treatments but not levothyroxine.

Also, there is no mention of the nurse being referred to the NMC under fitness to practise rules. This is a clear case of negligence and should be followed up.

RedApple profile image
RedAppleAdministrator in reply tojimh111

'not sure why they should discontinue levothyroxine if they think the patient is about to die.'

I agree. My guess is that most involved have zero understanding of what levothyroxine is actually for. It's just a little white pill that gets put into the dosette packs alongside other tablets.

shaws profile image
shawsAdministrator in reply toRedApple

Yes I agree.

I know one doctor in my surgery who hasn't a clue (he's in his late 60's now) told me that T3 converts toT4. I told him 'doctor that's incorrect'.

golfmargaret profile image
golfmargaret in reply tojimh111

Absolutely. I agree with both your points.

DippyDame profile image
DippyDame

Appalling...

I need high dose T3-only for RTH and self medicate.

"A GP once said to me, rather scathingly, " And what will you do if you have to go into a care home?"

"I expect I'll die from lack of prescribed T3"

No response!

This poor woman did have prescribed levothyroxine which could have saved her life....it beggars belief.

It's high time the medical profession got their heads round the importance of adequately treated and monitored thyroid disease.

bantam12 profile image
bantam12 in reply toDippyDame

What your Dr should have said is “ what will you do if you have to go into hospital”

My husband wasn’t given his T3 meds after an operation because the Drs didn’t understand the importance of it, he was only given low dose Levo and the lack of T3 contributed to his death a month later.

Marz profile image
Marz in reply tobantam12

So sorry to read about your husband. I have read that as T3 is not prescribed in hospitals ( in most cases) then the patients are not allowed to continue taking it. So barbaric .... it makes me fearful of the future.

bantam12 profile image
bantam12 in reply toMarz

He had multiple health problems so was in and out of various hospitals but him being on prescribed T3 wasn’t a problem until he had surgery at a major specialist hospital where serious mistakes were made.

Marz profile image
Marz in reply tobantam12

So sad to read ....

Buddy195 profile image
Buddy195Administrator in reply tobantam12

I’m so sorry to hear this bantam12. Truly shocking. I hope that hospitals learn from errors they have made 🦋

golfmargaret profile image
golfmargaret in reply toBuddy195

I’m very much afraid that it is we who need to learn from these awful stories.

DippyDame profile image
DippyDame in reply tobantam12

Oh bantam12 that must have been dreadful....so sorry.

bantam12 profile image
bantam12 in reply toDippyDame

Thanks, we can’t change what happened so have moved on.

DippyDame profile image
DippyDame in reply tobantam12

No choice really I guess

shaws profile image
shawsAdministrator in reply tobantam12

I think those of us who take certain medications with them if they have to stay in hospital. I think we'd have to be very discreet as I'm sure any medications will be taken from us when we first are admitted to hospital.

bantam12 profile image
bantam12 in reply toshaws

Being discreet won’t work if you are in ITU after accident, emergency or surgery because you won’t be able to take them anyway ! Besides which if the Drs don’t know what you are taking how can they treat you properly !

Hedgeree profile image
Hedgeree

This is terrible! Poor woman.

What is also a shock is that these were Advanced Nurse Practitioners!! I really don't understand as my experience of Advanced nurse practitioners has always been really good and they were thorough and very helpful. From my understanding they can prescribe medicines. Could there have been a breakdown in communication between the home managers and the ANPs?

I worry when I read stuff like this, very sad.

SeasideSusie profile image
SeasideSusieRemembering in reply toHedgeree

Hedgeree

I really don't understand as my experience of Advanced nurse practitioners has always been really good and they were thorough and very helpful. From my understanding they can prescribe medicines.

There was an excellent ANP at my surgery, he was actually better than the doctors and my choice if I ever needed an appointment. He also understood that TSH is not the be all and end all and after discussing my suppressed TSH he actually said to me "It's nice to have a conversation with someone who knows something about it" (or words to that effect). He understood that my TSH had been suppressed for over 20 years, will likely never come back into range, and was happy to just look at FT4 and FT3 - he often said to me if one of the GPs panicked about my suppressed TSH and wanted a telephone appointment to discuss it, which I always made sure was him, "It's OK, I know you're on top of your thyroid Mrs X". I did ask him to mark my record that my TSH never rises to try and save the frustration of these time wasting phone calls. I don't know whether he did. Unfortunately he's left now, many patients miss him.

When he first came to our surgery as an ANP he was not qualified to write prescriptions, he could decide what treatment was necessary and had to get a doctor to sign the prescription. A little while later he started signing them and I commented, apparently he had done further study and qualified to prescribe himself. So it's a case of some can prescribe but some can't.

Hedgeree profile image
Hedgeree in reply toSeasideSusie

Ah ok. He does sound like he was a brilliant, knowledgable and reassuring ANP. I've only come across them a few times, once in an A&E dept and also at a relative's gp surgery. They were both really helpful; one sorted out a prescription and the other a referral.

Also they didn't seem jaded or 'well past their expiry date' which unfortunately is becoming my experience with most of the gp's that I've met over the years.

jimh111 profile image
jimh111

This is a cautionary note. If we have to go into hospital or care we should put in writing that our thyroid hormone treatment must be continued and this includes liothyronine and NDT. It may also be worthwhile getting backup from a relative, friend or solicitor to make sure there is compliance.

Marz profile image
Marz in reply tojimh111

There is a very well informed and eloquent nember on this forum who was denied her T3 when in hospital with a stroke post v@xx. Of course this meant a worsening of her condition.

Denying access to patients in hospital and Care Homes prevents others pursuing the rights and wrongs of denying or administering medications. LPA's were/are often ignored.

bantam12 profile image
bantam12 in reply tojimh111

Not quite as easy as that ! if the Drs don’t agree with the treatment they won’t prescribe it. I did everything I could to get my husbands treatment/dose reinstated but the Endos wouldn’t budge and it that situation there is nothing any relative can do.

jimh111 profile image
jimh111 in reply tobantam12

I agree. I know another person who had her NDT denied for a long time. Hence, I think we should do everything we can to ensure we get our thyroid hormone including perhaps getting a solicitor to write a letter. It's an added expense but well worth it if you can afford it. A threat of sueing for negligence may concentrate the mind.

I don't underestimate the difficulty but it is so important to try, if only to help others.

DippyDame profile image
DippyDame in reply tojimh111

I wonder if there is any other medical condition to which this same appalling rubbish applies!

jimh111 profile image
jimh111 in reply toDippyDame

Anything specific to the female sex!

DippyDame profile image
DippyDame in reply tojimh111

Ain't that the truth!!

nellie237 profile image
nellie237 in reply toDippyDame

There was a case that hit the media a few months ago. An elderly coeliac lady in hospital was being fed Weetabix ...........she gasped (the assumption was that she realised, and tried to say something), aspirated the Weetabix and died as a result.

It seems that they just don't check, or ask for records when patients are transferred from care homes to hospitals and vice versa, even though there are regulations in place.

I think that for most prescribed meds a phone and access to your on-line record will suffice as proof of medication if unexpectedly admitted to hospital.........that is if you are compos mentis enough, but if you are self-medicating, or taking anything that required a funding request to a CCG like T3, then I imagine you're likely to hit a brick wall.

I'd wager that they make sure that they dish out the anti-depressants though.

RedApple profile image
RedAppleAdministrator in reply tonellie237

nellie237, 'for most prescribed meds a phone and access to your on-line record will suffice as proof of medication if unexpectedly admitted to hospital'

There are still many people in the UK who don't have online access to their medical records and there's little to suggest that's going to change any time soon.

Member DJR1 has been keeping us updated about the online access delays. healthunlocked.com/thyroidu...

nellie237 profile image
nellie237 in reply toRedApple

Yes, I should have noted that.

Framboise profile image
Framboise in reply tojimh111

A letter from a solicitor is a good idea Jim, and I'm going to ask around about it and the form of words. An LPA is also essential these days for anyone who, temporarily or permanently, can't make their own decisions. More money for the lawyers of course ;) but I just wonder if there is some means for charities to obtain a discount from some of the reputable lawyers who specialise in this field.

bantam12 profile image
bantam12

At the time there is no time to get solicitors involved plus in cases where Drs believe T3 is not in the patients best interest it would be a very brave (or possibly stupid) person to go against medical opinion and risk making matters worse, despite us all thinking we know best, in critical situations we have no say. We went through the formal complaint and investigation process but you cannot change a Drs beliefs.

Anyone self treating and doing it secretly would be in serious trouble if emergency treatment is needed.

Framboise profile image
Framboise

This is a heartbreaking and appalling story, but I have experience of things going wrong in hospitals over the last two years when my husband was twice an inpatient (due to a nurse removing one of his meds without reference to the GP) and nothing surprises me any more. Most of the staff were efficient, but I encountered a lack of common sense among some and a lack of caring among others.

The things that went wrong are too many to list, and have been life-altering for my husband. Suffice to say, I firmly believe that anyone going into hospital needs someone watching, and writing down, everything that is said and done, and questioning anything which seems odd. I have one friend who, even twenty two years ago, recorded everything that was said to him. Consultants generally do their rounds before visitors arrive, but they are always in the background and they need to be found and questioned too if necessary. Without exception they were professional and helpful, but didn't see the need to keep me informed, or more likely didn't have the time to check that every patient's next of kin knew what was going on. Above all, we have to be able to question without feeling that we are intruding into some secret medical world which we should blindly trust - there are still too many who believe everything a doctor says.

In the past I've asked my children to ensure I was given NDT if I was unable to take it myself, but now I realise that no-one would listen to them. I recently asked my private endocrinologist to resend all his letters about my thyroid condition, which the NHS don't recognise, so that there would be something in my medical records, but I doubt even that would suffice in an emergency situation. By the way, everyone should have a properly written and registered Lasting Power of Attorney these days, medical and financial, for just such a situation, but even they can take a while to produce. I am now going to see what a few friends and colleagues think of a solicitor's letter as per Jim's suggestion.

golfmargaret profile image
golfmargaret

Not very ‘advanced’ nurses then!

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