This text message from the hospital - wtf?

[Afternoonsnooze]

I’m not sure if this is a common thing post op but wondering if anything similar has happened to anyone on here?

For the last 2 years the hospital have been faffing about with my sister’s health after she had visited the GP complaining of exhaustion and heart palpitations. They discovered her blood calcium levels were sky high and many scans later informed her she had parathyroid disease and would need the tumour removed.

March last year I accompanied her to chat with the consultant regarding the op. We were told the operation would go ahead that summer.
That never happened. She was eventually given a date in November only for it to be cancelled last minute.

After lots of false starts she had the op 3 weeks ago.

In recovery she was told all had gone well and to go to the GP to get the stitches removed (she did this a week or so ago).

Late yesterday she received a text message from the hospital to inform her the op didn’t go well because they could not find her parathyroid gland and therefore have not removed the tumour. She will now need to have an extensive ct scan (this will be her 5th in 2 years!) to locate the gland and she will need to have the op again!

My poor sister is self employed, doesn’t have a lot of money and just can not afford to take more time off.

I can not understand why on earth they didn’t inform her of this when she left the hospital or at the very least a day or two later. I’ve told her to complain to PALS but she won’t as she’s not a complainer. What would you do?

I’d call the Consultant or their secretary to speak to an actual person and find out what’s going on.

She absolutely needs to complain! I could be wrong but I fail to see how it's normal or common practice to deliver news like that over a text message. That's really poor service and given her dealings with them already, I can't see it getting much better going forward. This needs to be raised an issue, if not only so they are aware it's not acceptable as a patient.

That's terrible, who is the text actually from, it's the sort of fuck up I would expect if it was meant to be sent to her gp. I would definitely complain to PALS, the consultant surgeon and the director of surgery. I hope your sister is okay, poor woman.

Absolute rubbish care to get that over text but the time delay will be because the samples will have gone to pathology for examination and that's when they will have found no parathyroid tissue. There are huge delays in pathology sadly. I feel for your poor sister.

WTAF….first of all escalate this in complaints …get on the phone and speak to secretary I think that’s all you will get and ask what the hell is going on this is a terribly miscommunication shocking how distressing keep us updated

Not common at all. Surgeon who did the op should speak to patient briefly afterwards to give them immediate news on how op went and next steps. Thats the point she should have been told they hadn't been able to locate the area. Definitely not by text!! If they later discovered something different in the samples they'd removed she should have been given an appointment to discuss this.

She needs to call the consultant's secretary and ask for a call from him/her to explain this properly.

I assume at the time of the operation they thought they had removed it.
They would have sent the tissue to histology afterwards and that has probably now come back with the results that it wasn’t the gland or not all of it was removed.

The only thing I can think which may have occurred is what Musicaltheatremum has suggested. Maybe the tissues taken by surgeon (which she believed to have been the tumour) actually wasn’t and pathology have only just discovered this?
I can’t understand that though because when we visited her she showed us the scans and it was there as clear as day, three ‘normal’ looking glands and one very large tumour. How could she have missed it?

Dsis is contacting the secretary today so she will hopefully find out more later.

Different department but the same hospital has messed me about for years so I have very little faith in them.

It must be the case. Just bad luck dsis will now have to go through the whole thing again.

I think more information is needed here. She would have surely been seen post op. Did the text message follow lots of unanswered calls/ letters? Did your sister ask for text message preferable as method of communication? I think it's very unlikely a healthcare professional would text without any previous discussion

OP, your sister is correct to contact the secretary and get clarification from the surgeon as the first step.

Does she still have her copy of her post operative discharge summary? I would have expected that to clarify regarding the plan for follow up/ wait on tissue sample results etc

In all honesty I really don’t know much regarding texts/messages etc only but I do know that immediately post op the only people she spoke with were the nurses at the day surgery department and the only other person she has consulted with since has been the GP surgery nurse to remove the stitches as I had to drive her there as they had advised no driving.

I’ll ask her regarding the post op notes etc, see what they mention.

You really do need to investigate this properly. Speak to surgeons secretary, complain to pals. Is it possible that the consultant / surgeon came to see her after the op but she was so dozy she doesn't recall?

Ask her for her discharge summary and she can request to see her notes, had she consented for removal or for a biopsy? It sounds really frustrating, I wonder if she did see a doctor post op, I would expect a doctor to check everything was okay before she was discharged unless it was a nurse led unit which I doubt,

She has contacted the secretary, no answer so has left a message and we will go from there.
I am popping round to see her later so will look at her post op notes, see what was mentioned.

At our hospital, the secretaries turn off the phones, never answer them. ( husband is a consultant so knows this).
If she has no joy with speaking to her consultant's secretary and PALS is taking too long, I would contact the chief executive of the hospital.
This is wrong on so many levels.
Your poor sister.

Can you elaborate on that a bit? Why do the secretaries turn off the phones? This must be on the instructions of consultants like your husband?

I work in the NHS and it is the admin managers who tell secretaries to do that type of thing. Ours were told that 'taking phone calls from patients gets in the way of your work'. Sadly clinical staff have very little say in how hospitals run, hence the mess they're in.

OK, so there are 2 issues at play here:

1. A confusion about the secretaries’ job description.
2. Confusion around numbers being available to call if they cannot be answered. After all if the phone is off it’s not just patients who can’t get through, is it?

If secretaries are not supposed to speak to patients as a matter of policy, fine. But be consistent about it, take away their phones altogether, don’t just have individual managers tell them to turn off their phones, or some who decide to take patient calls and others who don’t.

Gosh, what have they taken out instead though?

The four Parathyroid glands are each the size of a grain of rice and are located behind the Thyroid gland in the neck. The operative area is behind the very vascular Thyroid gland and surrounded by the carotids arteries and vena cava veins, so a scary place to operate, because of the risk of damage to these major blood vessels causing catastrophic bleeding, also potential damage to the larynx (voice box). These adenomas do tend to be fairly small, usually only millimetres in sizes, and very similar in texture and colour to their surrounding tissue. It is not easy surgery. The tissues removed are sent for histological examination and only then can it be confirmed or not, that the Adenoma has been removed. The pre-op scans are very accurate, but not 100%, given the nature of the Adenoma tissue. This should have been clearly explained to your sister before the surgery, and she should be also have been given information in writing on a leaflet to keep. Presumably she signed a consent form for the surgery?

What is worrying about this is that lack of understanding, but more worryingly that your sister appears not to have had (at least you have not said) at least two normal blood results from test taken immediately post operatively and a week or two later, to confirm the blood calcium and parathyroid hormone have returned to and stayed at normal levels, thus confirming that the Adenoma had been removed. When I had this op, I had to stay in hospital for some days as my levels went too low, which also has health risks, and ended up having eight blood tests until the levels were ok - I had some spectacular bruises 😂!
If you search on the internet, you will get loads of hospital published patient information sheets, which will explain things better than I can.
Your sister needs to talk to her GP or the surgeon or Endocrinology doctors to understand what has happened and where they go from here. Then you can decide whether there has been any poor care that warrants a complaint. PALS are good at getting to the bottom of issues, not just complaints, so they could be helpful if you cannot get to talk to anyone fairly soon.
There is medication that can be given where the calcium remains too high, though surgery is the best option in the long term. Also has your sister has a bone density scan, as raised calcium can cause Osteoporosis?

Contact PALS in writing AND by telephone, ask them to investigate straight away, do not accept they will get back to you. Also see if you can find out, or ask for the contact of the medical director (all hospitals will have one) and send/speak to them with the issues. The medical director is there for these exact issues.

There has been detailed info posted here about PTH, it is important the issue is sorted quickly as long term damage can occur. There should also be checks done on that the thyroid glands are functioning properly as they can be damaged when trying to remove PT tumours - parathyroid glands so called because they are next to the thyroid glands.

The ability to locate anatomy on a scan is very different to the ability to locate it during surgery.

It's not unusual for the surgeon's field of vision to be hindered by other structures or bleeding.

I imagine they've sent the collected tissue to histology. Histology reporting isn't done instantly, you have to wait for the results. Hence the delay in finding out.

I think a text message is a very ill-thought method of communication. But I doubt the surgery was substandard.

I have had similar happen nearly 10 years ago. I had the first op on parathyroid - 1 and a half glands removed but didn't fix the problem.Turned out I had tumours on all four glands but they couldn't tell from the pre-op imaging they did. Had another operation 18 months later to remove another 2 parathyroid glands.
Like others I would encourage your sister to ask for an explanation. I remember feeling very low after my first op. I had literally had my throat slit open for no result! Hopefully in time your sister will feel better and get the surgery she needs. I had my second op at a bigger hospital that had equipment that could measure parathyroid hormone levels during the op , so maybe this will be an option for her?