DSis so ill - NHS doesn't care

[Worriedandpowerless]

Regular user NC.
My younger sister is in her late fifties and has been unwell for about 6 months. First went to her GP in October and was repeatedly sent away. Not the type to bother them.

Over the last 10 weeks she's lost over 3st, doesn't leave the house, in constant pain, vomiting, and now sleeps all the time. It is clear she's very unwell and getting worse fast now.

GP finally took her seriously 8 weeks ago and sent for some basic bloods and scans, which identified a possible cause - referred on the NHS and was told the first appt was Aug 2023. She doesn't have much money but paid for a private initial specialist consult and was referred back to the GP as the finding wasn't actually serious enough to be the cause of her problems. I genuinely think if we'd have waited for the NHS she'll have died waiting (might still do).

Pain and all got worse so her GP did then refer on the '2 week' cancer pathway which actually just meant a telephone consult at the end of 2 weeks, with tests booked for 2 weeks after that. Still waiting for the results. Mean time bloods came back to her GP and were very concerning so she was told to get more bloods... You guessed it, another 2 week wait!! She has another diagnostic test booked for 2 weeks time.

None of her care is joined up and she's never actually seen the NHS specialist in person. A nurse saw her as part of a test this week and mentioned she was dehydrated but did nothing about it.

I'm not sure what the point of this thread is. I'm terrified she is going to be one of those cases you read about that she either dies waiting for various tests or they diagnose something very serious and she's deteriorated so much it can't be treated.

Does anyone have any experience or advice? I don't think I can get the NHS wheels to move any more quickly but I could use my life savings to pay for a private clinic where they just do all the tests and get the results in days - does this exist? What else could I do?

@PeoniesAreMyFavouriteFlower - I completely agree with what you're saying, except by saying a parathyroid adenoma is benign, and less serious... if that's what it is, it actually is as serious now as something malignant. The average mortality of someone with untreated phpt is 55, and stroke, heart attack, renal failure are all extremely likely.

I do NOT understand why the GP is incapable of asking for these basic tests.

Plenty of GPs ask for further tests after signs of raised calcium, phosphorus , etc. A parathyroid test is quicker and cheaper than a thyroid panel, for example.

Any normal blood panel would include CRP, ESR, etc etc...

This is baffling, and appalling.

Another one saying A&E. We have recently lost my DH’s mother as she wasn’t admitting how unwell she was. I then noticed some issues and we got her to call her GP. They called her back - Monday - but the usual no appointments. They then said they’d send a paramedic on Wednesday, which was cancelled on the day. Wednesday night we had to call an ambulance as she couldn’t walk to the car for us to take her to A&E. They wouldn’t send one, had to wait for a paramedic to call her hours later. Decided ambulance was needed, we had to chase twice, finally arrived 12 hours after she called, Thursday morning. She passed away Friday and my husband is having massive feelings of guilt that he didn’t push the GP on Monday and if she could still be alive had he done it or taken her to A&E - though she was claiming she was OK all the way through. So I guess what I’m trying to say - if she is feeling that bad, take her. Be pushy. Insist on things being investigated. Hopefully it’s something benign that can be easily treated but, unfortunately, finding this out these days is way too difficult,

My dad was diagnosed with cancer after his gp sent him to A&E in the back of his blood results, my dad was past the stage of treatment by this time. Please take her to A&E.

High calcium levels, plus the pain, weight loss, nausea all signal bone cancer. I'm going through the same extremely slow process with my mum. Her gp had to phone the hospital and threaten to admit her if they didn't give her a CT scan following the MRI diagnosis of cancer. They miraculously had an appt for the same day....

The NHS is on its knees, nothing is joined up. It's a fucking disgrace. I'm sorry for you and your sister.

When I was in A&E for days they told me Monday was actually the busiest & worst day as people do tend to stay away at weekends if they can; like you are deciding to do. So take other's advice for the morning shift and maybe take her in tomorrow morning?

Yes they can diagnose serious illness there.

A biopsy is typically needed to diagnose cancer which cannot be performed in and e and the results take around about a fortnight. Many other blood tests which indicate (but do not diagnose cancer) take >24hrs. Various tests at an and e can indicate but not diagnose serious illnesses. I hope that’s helpful
In saying that, she does sound quite unwell and as PP have said an and e might be the best place to go. Just don’t expect a firm diagnosis.
Also re the raised calcium- is it calcium or adjusted calcium? If adjusted calcium is normal then that may be why the GP is not acting on an elevated result. Probably no benefit in speculating though- you would be best asking the GP who made that decision to explain it to you
I hope you make some progress in the coming days

Just to add to the voices saying take her to A&E. Better to try and get her seen there than leave it for another 2 weeks when she is this bad. She is lucky to have you advocating for her as it’s so hard to do for yourself when you’re that unwell.

So sorry to hear all your stories.

I'm going to try to convince her to go first thing.

No-one deserves to suffer through like this

Quite right: the treatment for hypercalcaemia of whichever origin will begin the same, whether due to a parathyroid adenoma/hyperplasia or malignant aetiology.

Then once the hypercalcaemia has been dealt with, then more specific treatment can begin.

God there are some heartbreaking stories on here. I am so angry & sad.

So sorry @DotAndCarryOne2

OP there is some great advice on this thread. Please just insist on taking Dsis to A&E tomorrow morning. Advocate & push. Thinking of you.

This is all so very depressing, especially as my late OH worked his tripe out as an NHS doctor - he would turn in his grave if he could read all this.

I have a heart rhythm problem and trying to get some sort of continuity of care is impossible - waiting weeks for appointments; scans lost; over-the-phone diagnoses; never see the same doctor. I am on my own here and it is very scary indeed when my heart goes haywire and I am breathless and weak.

I have spent a lot of money from my savings on back surgery that I would have had to wait a year for - a year in which I would have been unable to walk. How can this be right?

I am so very sorry that your sister is so unwell and hope that you can get some proper help for her soon.

Sorry - that reply fail was to OctopusComplex.

Worriedandpowerless, I hope that things improve for you both over the weekend, and she gets some appropriate intervention.

I had to take my Dad to A and E at 5 on a Sunday morning recently and it was pretty quiet. I know it depends on a lot of things and area but the wait for a doctor was 4 hours (luckily it was something the triage nurse could deal with so it was even quicker for him).

Personally I'd get down there for 6am. A lot of the drunks will have been and gone and the Sunday sporting injuries won't have started coming in yet.

I would definitely go and get her seen. Take a blanket, pillows, phone charger and supplies so you can make her as comfortable as possibly while she waits.

She doesn't have much money but paid for a private initial specialist consult and was referred back to the GP as the finding wasn't actually serious enough to be the cause of her problems. I genuinely think if we'd have waited for the NHS she'll have died waiting (might still do).

Op I'm really sorry to hear about your sister, but I don't understand this ^^.

What sort of consultant did she see? Was it a gastroenterologist, a gynaecologist?

Who chose the specialist? Was this a private GP or an actual consultant?

It's very unusual for a specialist not to arrange tests and you said they didn't find anything really wrong. It doesn't make sense because what you are saying is they 'missed' something and passed her back to her GP.

If they had , they'd have arranged a CT or MRI scan, a colonoscopy, or a more thorough scan of her ovaries and abdomen, there and then, or within a few days. Yes, she'd have to pay for those.

Your sister and her GP would have had a letter as a result of that appointment.

Have you read the letter?

Has anyone actually said to her what they suspect is wrong?

This is the missing part of the puzzle.

Most drs would be saying
it might be bowel cancer, we need to look,
it might be ovarian cancer- we need an ultrasound scan
it might be your liver or kidneys- a scan needed

What have they said and is she not asking?

Yeah this! What is it they've done?

Depending on where you are an Urgent Care could be an idea rather than A&E (although if not A&E a good idea).
Especially if attached to hospital (E.g. they closed our local a&e but there is an urgent care instead but they can still refer quickly to outpatient appointments and often quicker to get seen/triaged/bloods/scans in the hospital - they can then refer on to a&e if necessary.)

Blood tests - high calcium. This was through the GP and they've sent for more bloods but not sure what they're additionally testing for

So why is no one asking?

Is she not asking?

Can you not ask?

What is her GP saying and the consultant?

Just to add I see a pp said that Mondays are busiest as people avoid the weekends, yes that's true but you don't want to be in a position where they say you need XYZ done but you can't have it done until a weekday, as they will either tell you to leave and organise it through your GP or book you an appointment later in the week, all of which wastes time. If you'd rather risk going in twice but have a shorter wait I'd go tomorrow, if you'd rather try to get everything done in one go I'd go on Monday. Does your Dsis live alone? If so then I'd say you're worried that she's not safe in her own home because she's so ill. If they see how unwell she is and blood tests show up issues hopefully they will admit her, then she should be able to get all the assessments done that are needed.

I was deliberately vague to try to preserve privacy.

When she finally got an ultrasound through the GP at the beginning of this year they found something and she was referred to a specialist, but she had to expedite it by going private due to the waiting times. When she was the private specialist they said that what had been found was probably incidental and was not severe enough to be causing her symptoms so sent her back to her GP.

GP didn't really do much until she kept going back and insisting, that's when she got the 2 week referral to the current specialist (in a different specialism to that above) which ordered the tests she's now going through

Does she have a partner or children?

No one to be her advocate?

It sounds as if she is being very passive- and yes, of course she is ill.

BUT surely she's asked what might be going on?

No one has tests and a CT scan without a dr telling them what they suspect.

I’m so sorry to hear about your sister. We are in a sort of similar situation with my FIL. He had been trying to be seen by his GP properly as he has a new growth in his throat, voice changes and sudden weight loss. He actually presented at A+e and whilst they said it would need more investigation they could not refer him, the only way we have managed to get any progress was by getting a private consultant appointment and this has now led to active NHS treatment. Sadly it looks like he may have stage 4 cancer. My point is that it can be useful to go private to force action on the NHS.

You can get a private GP appointment and they will refer you on much quicker - places like spire health have GPs on site.

You could also use an online GP video appointment and they will refer you on very quickly.

She can speed up the process by seeing a specialist face to face rather than waiting for the NHS appt to come through. Especially if it's the same consultant she would see on the NHS anyway.

I don't see how keeping her suspected condition is keeping her anon, TBH, because all we know is she's a woman in her late 50s who may have something wrong.

If it's her bowel or ovaries, or liver or kidneys, saying that here would have helped posters to advise because it comes over as if none of you have a clue what's going on.

How would I get her tests privately given the NHS tests are already underway? Would the GP need to write a new referral? (Hope not as we'll be waiting even longer!)

A private specialist would request the test results or do them again. You need to query the cost as some blood tests are hundreds of pounds.

Some consultants want a referral letter, others don't. You'd need to ask their PAs.