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?

Could possibly be primary hyperparathyroidism, I had this with high calcium and similar symptoms, it was cured by having 2 of my parathyroid removed. However if it goes untreated it can be fatal. Agree A&E. She should try anything and everything to get diagnosed and treated ASAP so if A&E doesn't help then go private.

Another one here saying go to A&E and I work there!
People do it all the time with conditions already under investigations if they are in pain, losing weight or other concerning symptoms. The system is broken and it sounds like she needs urgent treatment.
They will likely rerun a set of bloods and if they’re deranged that might expedite treatment. It’s difficult to say more specifically what will happen without knowing what the abnormal results are.
I hope you get it sorted

OP I think if you can get her seen, you should.

She sounds very unwell, they won’t turn you away. At the very least they’ll give her fluids, an antiemetic (for the sickness) and do some bloods. If nothing else, it will make her more comfortable.

Maybe consider calling 111 and explaining that she’s vomiting, dehydrated and has altered consciousness.

Oh goodness. I would go to A and E she will be dehydrated . It may not speed anything up in terms of diagnosis till next week but there may be something to help meantime

I would take your sister to A&E it’s there to be used for life or death situations and you don’t know what your poor sisters situation is. She is ill she needs help now. A doctor will at least see her and they might admit her. Take care and hope you get some answers

Thank you all.

She won't go to A&E tonight unless she feels worse and to be honest I think avoiding it on a Saturday night could be best. I will speak with her first thing tomorrow and see how she is and if I can get her to go.

Otherwise I'll get numbers from her and call the secretary first thing Monday to chase the results.

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!)

She's already on an antiemetic - after the GP receptionist refused to make her an appointment and I had to call for her and make the case 🙄

I work for the NHS and I’m sorry you’re in this situation. It’s crumbling around us.

Take her to A&E, with comfy clothes, some entertainment, and some snacks she can tolerate. Accept there will be a wait, but if you’re prepared for it, then you can make it more bearable.

I’d be worried about myeloma. She needs repeat assessment if she’s worsening before your eyes. If things are truly as bad as you say, nobody in A&E will wonder what you’re doing there. Make sure the A&E you go to is in the same trust as the one her specialist works in - then they will have access to her bloods/scans from the referral. Results are not shared between hospital trusts, so attending an alternate A&E will cause further disjointed care.

Sending you positive thoughts, and wishing you both the best.

Do you know which one she’s on?

She could have it given intravenously at hospital, which is often more effective.

Totally understand not wanting to go to A&E on a Saturday though, or any night of the week.

I was told in a&e with my child after many tests that it wasn't cancer. Didn't even realise were looking for that! So I guess yes they can in a&e.

They were*

@KnackeredAF great tips, thank you
@usernamechanged1 cyclizine - it helped at first but not so much now

As others said, high calcium can be linked to cancer but it can also be hyperparathyroidism and does cause vomiting, weight loss and so on in the late stages and is very dangerous. If the calcium came back high, the doctor should order a parathyroid hormone test. Did you get a copy of the blood results from the private appointment? What else is on there?

I assume this is what the further blood test is for - first available appointment at the time isn't til the end of this coming week.

I dont have her test results unfortunately but I know she's had a few rounds of blood tests including looking for ovarian cancer markers, tumour markers, chrons etc. The only things she's been told have come back was slightly high white blood cells back in autumn (but apparently no concern) and the high calcium 2 weeks ago.

I don't care what A&E is meant to be for. Your sister has been let down and neglected and I wouldn't give a flying fuck what it takes to force the system to take her healthcare seriously.

You are going to have to be assertive, and not take no for an answer. She deserves way better. So many are being let down.

Someone mentioned contacting own consultant - I've been waiting to hear from my neurologist for more than a year. Every time I phone his secretary, who appears to work very part-time, she never answers. I leave a message. She never responds. Short of pitching a tent outside his office I don't know what I am supposed to do. Having been told at initial consult that there is clearly a neuro issue that he didn't think was Parkinson's but he would need to think about, and with the symptoms getting worse, I think I've a reason to be concerned.

So please be your sister's advocate. I am sure you will be. I hope things aren't as serious as you fear x

A& E now please take her! And good luck bless her heart

There are other causes but hypercalcemia is associated with several types of cancers. In the context of significant weight loss, pain and fatigue - it’s a fair possibility.

Hypercalcemia in context of cancer is an oncological emergency and requires urgent treatment so I would take her to A&E.

I hope she gets better care next week and you manage to get some help for her.

I just came on to say that my uncle had extremely high calcium levels last year and was immediately sent to hospital for every test going, everything pointed towards cancer and it turned out wasn’t. It was a medication he was on that caused problems with his kidneys, so it’s not always cancer with high calcium levels. I’m just saying that to give you some hope.
I wanted to also wish you the very best and hope you get some answers soon x

What are the concerning issues brought up by the blood tests?
What did the private doctor say? You said they felt it appropriate to send her back to the GP.
Is your sister eating and drinking?

I would agree with a trip to A&E as they can give intravenous fluids and tablets to lower calcium there. It's absolute misery. I have no parathyroids as they were damaged in thyroid surgery and was given oral calcium. When it went too high, even just a little, I was so sick, the nausea was horrific. And of course you can't eat when feeling like that so weight loss was rapid, as was dehydration from being sick. It's relatively easily treated with surgery if it is that, so I hope for your sister's sake it's this rather than anything else. Another annoying thing is, even if the calcium is only mildly elevated, the symptoms can be severe and very damaging to kidneys.

https://www.nhs.uk/conditions/hyperparathyroidism/
If your calcium levels are very high, you may need to be admitted to hospital urgently if you have lost a lot of fluids (dehydration). You may need to have fluids through an intravenous drip.
Medicine called bisphosphonates may also be given to lower calcium. These are only used as a short-term treatment. Surgery will be needed once the calcium levels are stabilised.

Possible signs of hyperparathyroidism include:

• depression
• tiredness
• feeling thirsty and peeing a lot
• feeling sick and losing your appetite
• muscle weakness
• constipation
• tummy pain
• loss of concentration
• mild confusion

Symptoms of hypercalcaemiaIf hyperparathyroidism is not treated, it can lead to high blood calcium levels (hypercalcaemia), which may cause:

• being sick (vomiting)
• drowsiness
• dehydration
• confusion
• muscle spasms
• bone pain or tenderness
• joint pain
• irregular heartbeat
• high blood pressure (hypertension)

There are various non-cancer causes - hyperparathyroidism, sarcoidosis, kidney failure etc as well as certain medications. In the context of major weight loss, pain, and fatigue - cancer is a distinct possibility and needs to be ruled out - because if cancer is the cause it needs to be aggressively treated. (It’s also associated with poor prognosis so diagnosis is needed asap).

This is why I thought it even more strange that the nurse commented she was dehydrated but didn't do anything about it, given the calcium levels. But I suspect the nurse didn't even know about the high calcium and DSis wouldn't have thought to mention it.

Go to A&E - now ,take her
I had to do this with my DP it was near identical
dr ignored and ignored weight loss vomiting faecal breath stomach pain
he had bowel cancer and is now undergoing chemotherapy.
all the best and god bless

Hyperparathyroidism is easily diagnosed with a blood test for parathyroid hormone (in conjunction with high calcium levels). I’d be surprised if that hasn’t been tested already but that may be what the GP is testing for now.

Even slightly raised white blood cells should be checked out, and she should have been re-tested to see if it was just temporary or if levels remained higher than normal. A high white cell count can indicate a lot of things including infection and inflammation, through to blood cancers and auto immune disease.