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 Nan had some bloods a few weeks ago, the results came to the GP Friday afternoon. GP rang Nan and told her to get to A&E within the hour as she had high calcium and it can be super dangerous. She was exhausted, lost weight, unsteady on her feet and had awful stomach/back pain. She was admitted for further tests. There's an issue with a hormone secretio gland in the brain causing the hypercalcaemia and she's under an endocrinologist just now and much better.

If we had to go to A&E on GP advice for high calcium, there's no reason your sister should not.

Praying for you all, OP.

I know it sounds a bit odd, but have you tried 111?

I know of two situations where someone called them with serious symptoms; in one case there was suddenly an instant GP appointment available and immediately to hospital (after nagging the GP for literally months). In the other an ambulance was sent.

Fingers crossed for your sister, OP.

I guess depends on the A&E, we would absolutely admit people for dehydration pain and nausea that wasnt controllable at home. Pain IS an emergency if it is affecting every day life and you cannot ease it at home with over the counter medications or others prescribed. We would treat the symptoms there and then, we would run the immediate blood test we can run and general scans and see if that flagged anything that required further treatment and full admission, when more investigation could be done. However, if the gases and scans didnt show anything, there wouldnt be grounds to admit, and it would be back to the GP from there.

If she is struggling, then A&E is you best option, however what happens then would depend on what investigations they run as standard, and what they show.

I hope she gets some real answers soon.

@LIZS the OP is describing a situation where her Dsis IS acutely ill. She's rapidly losing weight and clinically dehydrated.

When dd was alive I had to call an ambulance numerous times. Each time I panicked I would be wasting their time. Each time I was told it was absolutely necessary.

I often think posters are being ridiculous suggesting a&e but your sister sounds seriously ill and in need of urgent help.

Your sister will only be here on this planet once. Take her to a&e. Tell them she can’t keep anything down and is in uncontrollable pain and do not leave until you have some answers. You must advocate for her and help her get some help asap. The worst that can happen is you don’t get an answer or you are made to feel as if you’ve wasted their time. If something awful happens, you/she will regret not trying everything.

good luck, I am sorry she’s been let down and fobbed off by doctors.

I'm afraid this is how the NHS is these days, and to get anywhere you have to be one of 'those' people - with knobs on. It really is a case of the squeaky wheel gets the most oil.

Obtain her permission for you to act on her behalf, you will have to fight for her, keep asking questions, over and over again until you get an answer, her life may depend upon it and I'm not exaggerating! You will have to turn into someone you really don't want to be. You don't have to be rude and agressive, just very firm and persistent.

Ask what needs to be done next, when will it be done, who is responsible for doing it, and ask for contact details of that person (people will give it to you just to get you off their back) and then chase them up. DH once stood in the corridor outside a consultant's office until they came out to speak to him about MIL

Get a notebook and pen and write down everything they say, get names, chase, chase, chase.

I wish you the very best of luck OP and hope your DSis soon gets the treatment she needs.

@LIZS I'd say this is definitely a case for a&e, poor lady is very ill!!

The NHS is fucked
I have a lifetime condition from which I previously nearly died. It is rare and I need to see a specialist not a generalist
Flared up in August 2021- limiting my life considerably- been on a consultant waiting list since then and still another 12 months to wait

Good luck OP. If you are England or Wales then first thing Monday get onto PALS (not sure of the Scottish equivalent) & the consultants secretary. You might be able to check now online if the consultant is able to arrange any of the investigations privately to then transfer your sister back into NHS care.
But ultimately high calcium is a medical emergency along with uncontrolled pain so not at all unreasonable to go to A&E now for better symptom management.

If she is dehydrated and also has hypercalcaemia then she needs IV fluids. An absolutely acceptable reason to go to A&E.

Personally I'd go to AnE as they can fast track what she needs.

I've done it before, actually on advice of my GP when they ran out of options of how to treat me.

I'm so sorry for your poor sister.i echo those saying go to A and E.

You definitely know the NHS is crumbling when things like this are happening.
I hope you get your answers, I can't even imagine your pain

With high calcium levels and the rest I absolutely would go to A&E, based on my mums experience. There was big concerns for her kidneys when her levels were v high, the fact that your sister is rapidly declining and no one is doing anything I would absolutely bring her. Be prepared for a long wait to be seen in there though

Don't dispute that op dsis sounds very ill. If she needs immediate treatment of course it is the first port of call, assuming she is able to get in a car, or even call an ambulance. However weekends in A and E are not ideal situations to get efficiently treated, get referred for outpatient appointments and avoid further infections.

Go to A&E. My DM got mucked about by GP after going back and forward for a month. I took her to a&e on the Sunday of a bank holiday weekend. She got an urgent scan and they found all the cancer then and there. She then got admitted to the ward. Sadly she passed away 5 weeks later.

I really hope your Dsis gets the care she needs.

I would really start to get very vocal, and call the consultant’s PA to discuss and get things fast tracked. The NHS is really crap atm, and just can5 be trusted to get anything right. My bil has just had results back from COPD tests. Ongoing since before Xmas. Had appointments cancelled. Hospital didn’t pass on results to GP. We’ve spent hours on the phone trying to get results. He was also diagnosed with leukaemia last year after some routine blood tests, and wasn’t told he had it - first he knew was when he got a booklet through the post with referral to McMillan nurses. I have zero confidence in the NHS getting anything right. You just have to be very proactive OP and fight your sister’s corner.

I would also go to A&E. Vomiting, dehydrated and in pain. That’s reason enough. I have very little faith in GPs anymore, especially when it comes to cancer diagnosis. My late husband was seen frequently by GP over a period of months when he was having pain in his shoulders and various other symptoms. I had googled and with the blood test results he had, it seemed that lung cancer could be a possibility. GP more or less told us to stop googling as we didn’t have the necessary knowledge to identify what was and wasn’t relative - he was diagnosed with a trapped nerve and given pain killers. A short time later he fell and broke a bone and was admitted for surgery. He became very unwell while in hospital and during the course of investigations they found an advance lung cancer. Consultant said it had set up a serious chest infection - he did have a trapped nerve, but it was the tumour sitting on the nerve and that had been the cause of the shoulder pain. He was put on a ventilator and never regained consciousness. I question everything now.

Her symptoms sound extremely Concerning,

She needs to be seen medical As soon as possible
Straight away urgently

@Worriedandpowerless

Take her to a&e now

She needs urgent medical care

2 week pathway means contact with anyone from the specialist team within 2 weeks, not tests/diagnosis unfortunately.

Whatever is going on, the number one priority is getting help to make her feel better.
If she is in pain, dehydrated and is suffering from nausea and vomiting, then A&E can actually do a lot in a short space of time to improve all of those things. Pain relief, antiemetics and fluids could have her feeling a whole lot better.

I would go to A&E with those symptoms and have in the past been told to by my gastro and renal team - dehydration alone can be deadly and they will be able to do bloods there and give pain relief , please don’t wait on the GP I’ve got long term damage to my kidneys from dehydration and secondary parathoidism

Another vote for A&E. A relative was passed round and round the houses re her daughter with tests and nothing conclusive and waiting, and nothing being joined up or sorted out and it went on for months. Finally her dad got fed up and took her into A&E. They joined up all the dots and identified leukemia.

She needs urgent medical attention. Please take
Her to A&E