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?

My late DP refused to go to the doctor despite the fact that he was very clearly unwell. Eventually he got so bad that I managed to get him to go to A&E. Sadly he was diagnosed with very advanced lung cancer. They did x-rays which showed it quite clearly. I am not sure what the situation would be for tests for other forms of cancer.

I'm so sorry OP. It's really terrible when you know something obviously serious is wrong. I know my DPs situation was a bit different but A&E might answer the questions.

The GP said it was nothing to worry about and no further investigation needed.

It does feel like we should start from the beginning and get everything tested for her. Maybe A&E is going to be the best choice

Go to A&E. It saved my life. I’d have most likely died if I’d waited for my nhs appt. (I went to A&E in a November, my nhs appt was for the following April! No way would I have lasted that long if I’d waited). A&E weren’t interested that I already had a referral in April they dealt with me there and then.

The best time to take someone to A&E is in the morning when the new shift comes on.

What time is that? 0600 or 0800?

If it’s not an immediate necessity I mean. In this case it could be.

It may vary but doctors 8am. The quietest time is 6-9am.

OP what were the findings from her private consultation? Check if she's entitled to any follow ups without charge, my mum has had that.

The failure of her GP is really something. I would honestly flag it to your local MP because occasionally they will get involved. It seems astonishing that it took them so long to do a basic set of blood tests!

If she can cope with A&E it's best to go early morning. Mum is 84 and has done two stints of lying on a trolley for 18+ hours. This was with (suspected) heart attack, then stroke. So she needs to go prepped for that. I am so sorry, this is appalling.

Just jumping in to say I wouldnt feel any shame in going to A&E. And I agree Saturday night not the best. Tomorrow morning probably best. So sorry for you, we're in a total shit show

I was also coming to say about hyperparathyroidism. I don't give a shiny shit what anyone says, this is an A&E situation. It will be long and unpleasant, but hopefully you and your sister will get the answers you need. God I am so angry at this government and their decimation of the NHS 🤬 how do these people sleep at night?!

My DM died because the GP misdiagnosed her. By the time we got her admitted via A&E it was too late.
Do whatever you need to to get a diagnosis.

@DustyLee123 Really sorry to hear that.

I’m so sorry that you and your sister are having such a tough time.

If the vomiting is due to hypercalcaemia (high blood calcium), then cyclizine is unlikely to help. More effective drugs would be haloperidol or levomepromazine - these can be taken orally, but can also be given intravenously/subcutaneously, for people who can’t keep tablets down.

Depending on how high the calcium levels are, she may need IV rehydration +/- other drugs to bring it down. If blood calcium levels are really high, there’s a risk of abnormal heart rhythms. Those can be detected/excluded on an ECG heart tracing machine.

It may be something benign, such as a parathyroid gland problem. Or it may be something more serious, like a malignancy. I hope you find out soon. Not knowing and not having a plan is very hard.

If sitting in an A and E waiting room is likely to be a challenge, I would try to get a GP out of hours appointment in the first instance, and they can then refer onto the hospital doctors as needed.

A and E are unlikely to do any diagnostic tests beyond those needed for emergency treatment. They do sometimes diagnose serious conditions such as malignancy, if it’s apparent on tests they have carried out e.g. finding a brain tumour in someone with a reduced level of consciousness who has needed a CT head scan. If her calcium is raised and she is dehydrated and vomiting, they are likely to start IV fluids and to ask the hospital physicians to admit though - and they can chase up previous results/do any others.

My Mum had bowel cancer , knew she did and was under a specialist waiting on surgery. She was told if she had a vomiting or diarrhoea "explosion" she was to go to a and e and not wait for the next appointment as it was urgent. So I'd take her!

If she has had some tests on nhs seeing a consultant from the same department privately should mean they can access the results.

Another one recommending A&E my husband was admitted and then diagnosed with cancer after becoming unwell like your sister - gradual poor health and then really unwell.

This was 12 years ago and the GP sent him to A&E but they would never do this now because they aren’t supposed to be overloading A&E. I honestly think my DH would have died waiting if he hadn’t been sent to A&E.

Complain to your MP? I'd also make a complaint against the GP who fobbed her off, unless you think that will worsen her care for the moment.

My friend is an A&E consultant and her advice to me when my mum was very ill was to go to A&E, even if in a sense it isn't the right place, because the NHS is on its knees and the only way to get an urgent scan etc is through A&E. Go on Monday morning (as there are some tests etc they can't do without the right specialists in, which they aren't at the weekend) and as someone else at the start of the morning shift, so c.0800. I'd just say she's in worsening pain and can't cope any more (plus obviously share all her other symptoms). Fingers crossed they can help - and that hopefully it isn't as serious as it seems.

Has she had a morning cortisol blood test? Possible addisons disease with weight loss, vomiting etc. Blood test needs to be done first thing to get accurate cortisol reading.

I know you've already been told this multiple but definitely take her to A&E. I was in heart failure at the end of 2020 which was missed multiple times as I was bounced around so much and was only diagnosed when I presented myself to A&E! I didn't want to go as I felt rotten but so glad I did or I would probably have just died eventually while no one actually helped!! Please take her.

It’s not the nhs that don’t care. It’s the government that don’t care

I would try a & e. Tell them that your sister is really ill. Hopefully they will admit her.

Also contact PALS at the hospital to see if they can find out what is going on with her care.

P.S. Husband is an A and E doctor and says none of them would bat an eyelid if your sister arrived at A and E. I’m no longer practicing, but when I was working as a Physician, I’d have happily seen her as a referral, with those symptoms.

In terms of shifts, the current A and E shift will usually finish at 10pm or midnight. The morning team come in at 8am. There are usually more staff around in the morning. There have been gaps in the rota in my husband’s hospital though, and although they are all doing extra, sometimes they’re down staff on a particular shift.

Do you know the value of her calcium blood test at all?