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?

Did they have cancer diagnosed in A&E? Could they actually do the tests required?

The majority of cancers in the UK are now diagnosed in A&E in the UK, exactly because of situations like this.

A high calcium should mean further tests immediately before it becomes life threatening. She needs to be in hospital.

Not the majority - around 20% depending on on type and the study.

Did she get a ct scan?

Keep pushing, she needs someone to fight for her. Hope you get some answers soon.

My mum had this. She was definitely not well and kept falling. Took her to A&E but was sent home. No improvement next day as I stayed the night and my dh the next day called 999 and she was taken to hospital were I was told her calcium was off the charts. She also was a bit out of it and delirious. She had one of her parathyroid glands removed.

Have they checked her parathyroid glands?

Hi OP. I don’t want to be an armchair doctor, or give you false hope/ negativity either.

My sister had the same thing; exactly the same symptoms. After blood tests, calcium levels were excessively high - which is usually an indicator to cancer. Anyhow it turned out it was not, and it was a thyroid issue which caused the calcium elevation. Elevated calcium levels bring on those type of symptoms.

Hopefully and fingers crossed it is not cancer, but to reasssure you, once her tests were done she was actually booked in for surgery very quickly and things began moving at a much faster pace following her in person consult.

sending you and your sister the best of luck and well wishes x

This is the part that doesn’t make sense. Do you mean you personally don’t have the results or the results have not been given to anyone yet? I know you’re very worried but CT scans can be read immediately, and would be if they suspected something serious.

I was taken into A&E in critical condition in January. I had s CT scan done and the doctor had the results before the porter had brought me back from the CT room to the bay in A&E where I was being seen. In my case I had massive bilateral pulmonary embolism and heart failure. My husband was told I was a few hours, at most, from death (I was in and out of consciousness and have little memory of the event, fortunately) and I had to have surgery immediately. Within 20 minutes I was on my way to the operating theatre. The doctor suspected PE when I was on my way in the ambulance due to my symptoms that the paramedics gave him by phone. The CT scan was to confirm/disprove his suspicion. This was at 1 in the morning on a Friday night/Saturday morning. There was someone there to read the CT even at that time. There’s no messing around when they suspect something very serious.

My private consultant sent me directly to another private consultant when he thought they need to change tack. I’m surprised hers just sent her back to the gp - unless it was cost.

Good luck op. I’m afraid it is a case of “He who shouts loudest…”

My brother was fobbed off repeatedly by the GP who kept prescribing anti depressants. 18m later he was dead from a brain tumour. The NHS may be free but it ain't great.

In my experience the nhs are great at acute care but GP's I think are so used to hypochondriac's that they don't take someone seriously when they could potentially be very unwell..

I hardly ever go to the doctors and expect to be take seriously when I do go but they don't seem to take the same view sadly!

One of my friends died due to be brushed off by GP with back pain .. by the time they found it she was full of cancer and dead a few months later ! A early scan would have found the start of it ! 🙄

I’m so sorry you are going through this. All sounds so similar to FIl. Went to GP for 2 years & was told it was his emphysema. They just missed the lung cancer with it.

Good luck.

Maybe @Worriedandpowerless I can provide help with your navigation of the private sector? (Used it for 30 years.)

Someone in my family has cancer, found at Stage 3, now Stage 4.

They set up and organised private investigations for some symptoms (the cancer was found by accident and not linked to the reason for the investigations.)

When the suspicious signs were found on an ultrasound, the consultant actually phoned them when he (the doctor) was on holiday. He felt it was so urgent.
He advised them to make an appt privately to see a surgeon and he would send the scan report.

He also advised them to get onto the NHS pathway for the same (appt with a surgeon) and see which came through first.

We had an appt within a couple of weeks with a surgeon (privately- we set that up) and the surgery was done a couple of weeks later.

Meanwhile the NHS had still not come up with a date for a scan (they wanted to duplicate the one already done privately and also give an appt to see the NHS surgeon). When the dates was given, my relative had already had their surgery.

The reason I'm saying this is you have to take control. Or someone has to.

There will be a limit I assume to what your sister can afford. But she needs a diagnosis and she can then mix and match private appts and NHS treatment.

Don't spend time worrying over how blood test results will be accessed- that's for the Drs to do. Any dr working privately will just request results from her GP.

I still don't understand the consultant she saw not finding anything 'serious'. Either it's been missed, or your sister isn't as unwell for serious reasons as you are imagining. That kind of decline so fast can be bowels, pancreas or stomach - but that would be visible on a scan. Or severe diabetes.

Hope you have managed to convince your Sister to go to A&E @Worriedandpowerless ?

Also a thyroid issue if calcium high, I am in healthcare and I would 100% take her to A/E.

My mum was fobbed off by the GP for weeks and only Got her bone cancer diagnosis by going to A&E. As soon as she was in there it kicked off treatment and specialists etc.

Keep pushing, and I second going to A &E .

My mum got fobbed off and fobbed off by the GP, until she got that bad that she end ended up at a & e and only then were the tests run and was confirmed what she had got.

I don't know if it would have changed the eventual outcome if was discovered earlier but I'm very very angry at her treatment.

Thoughts are with you and your sister.

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?

Why doesn't she go back to the consultant she saw in the first place? How did she know which type of consultant to choose? The fact he referred her back to her GP suggests he didn't find anything wrong. But did he have the right specialism?

I think we need more info from you to help you.

The point being- did she see the 'right' consultant? For example, if it's possibly her oesophagus, stomach, pancreas, liver or bowel, did she see a gastro consultant? Did they suggest an endoscopy to check her throat or stomach?

Or is it gynaecology where they need to look at her womb and ovaries?

Normally, they would do all the tests needed very fast if they thought she needed them- scans. CT/MRI/ blood tests.

If they thought she needed another consultant, like a rheumatologist for bone disease, they would have referred her to a colleague.

I know you say you want to keep her 'anon' , but the BIG question in all of this is why did the 1st private appt not reveal anything - or that dr pass her onto another for more tests? Unless you can be honest here, it's really hard to advise.

Thank you all again. At the moment I can't convince her to go to A&E and she's actually a bit better today and seems more hydrated. I'm going to keep trying and use the information here, if not then she's agreed to be straight on to the consultant tomorrow.

@Jiggery I'm not sure what you want from me? I can tell you're trying to help but please bear in mind that I haven't been to these appts with her and she's ill so not the best or most accurate.
The private consultant did say she needed more tests but she asked to be done on the NHS, but that isn't the priority given her issue that that consultant is dealing with is incidental. I've seen the letter sent to her GP which reinforces this.

And conversely, my mum was in hospital after collapsing and they suspected cancer. I chased CT results for three days and they kept telling me that they couldn’t say until the consultant had reviewed them. It’s not consistent is it ?

I would have thought that at this stage a haematologist would be involved.

Unfortunately there little that you can do if sister doesnt co operate. Is she burying her head in the sand? Is she actually telling anyone how ill she is and the weight loss?

My mother had a very similar experience last year, I'm very sorry to hear your sister is going through the same.

My mum rapidly went downhill with similar symptoms to your sister, over a similar time period too.

Her GP was good - did blood tests immediately, which showed anaemia, which can be an indicator of bowel cancer, so she referred for a CT scan. This happened within 1-2 weeks, and showed a mass in her bowel.

From there, her treatment was...awful. A two-month wait for a colonoscopy to confirm diagnosis. So we went private for that. The doctor who did that procedure saw how ill she was and phoned the local NHS hospital to admit her.

Thereafter followed three months of shocking lack of joined-up care and communication between NHS professionals and with us to (a) confirm diagnosis and (b) get a treatment plan (or indeed get them to confirm whether there was any treatment that would help). All the while, watching her get weaker and weaker as they faffed about, muttering that it may not be treatable, but never confirming it. It was horrendous. Inhumane in fact.

Eventually she was diagnosed with stage 4 bowel cancer, with a small spread to the liver (questionable whether that spread happened due to lack of timely treatment). She had an operation to remove both tumours. She was very weak before and after the operation, and long-term prognosis isn't great, but six months on she's recovering well.

Here are my tips:

• I wouldn't hesitate to take her to A+E, do whatever you need to to get her the treatment she needs.
• Identify who is in charge of your sister's treatment and become a thorn in their side. Make sure they give you answers. Put everything in writing, emailed to them and their secretary. Then follow up and chase on the phone as needed. Confirm anything significant they tell you back to them via email. Create a paper trail. We had to deal with an incredible amount of bullshit - for example, one doctor telling us an operation would take place 'within two weeks' then getting passed to someone else who knew nothing about this.
• The only thing that really seemed to motivate the 'team' who looked after my mum was an emailed threat of an official complaint to her consultant.
• Always ask to speak to the consultant - my experience was more junior doctors like to talk a lot, but will tell you anything to get you to shut up.
• Basically shout as loudly as you can - I think the NHS would have quite happily let my mum die if we hadn't made such a fuss (and without treatment that would have happened quite quickly).
• Also - my experience was that private treatment was by no means a panacea. We still had to wait a good few weeks for appointment for colonoscopy, for example. We looked into a private operation, but it just wasn't available (in Scotland), as private hospitals aren't equipped to deal with complications in recovery. It's worth looking into, but there was no 'phone a number and everything happens within a week' for us.

Best of luck to you x

@DotAndCarryOne2 there has never been mention of a haematologist - should we suggest this?

@RedCorvette incredibly helpful thank you. Like you I'm most confused about who is actually responsible for her overall care and I suppose this is because she doesn't have a diagnosis yet but it is beyond the scope of the GP.