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?

I would take her to A&E. Sudden weight loss, constant pain and reduced consciousness is serious.

Agree with previous poster. She needs you to fight her corner, so to speak

A&E and don't leave til you have answers. Say you're scared to leave her alone as it feels like she's ebbing away.
All the tests will be registered against her nhs number so they will be able to see what's happened so far.

This is heartbreaking. I hope she gets some answers soon OP. I'd also be changing my GP if I were her.

What are they thinking is wrong? What do you think is wrong? (I’m asking because I have chronic multiple health issues and might be able to point you in the right direction for NICE clinical guidelines for diagnosis to support you in a complaint if we know what’s wrong).

I agree with everyone else it sounds like a trip to A and E. Sadly both my Mum and Gran were only diagnosed with bowel cancer by doing this and were completely fobbed off before. I’m not saying it’s cancer but these stories are all too common.

A and E is not the right place unless she is acutely ill. If you know the consultant who has ordered the tests ring his secretary on
Monday and ask if there are any cancellation appointments or can they expedite the tests.

Meant to add if you do want to go private you can just google the nearest private hospital to you (Spire is a good National one with many branches, or Nuffield or bupa) and they’ll get you an appointment with a consultant as a self paying client and you can go from there.

Christ, your poor sister.

Id be extremely worried it was cancer of a major organ.

I usually don't advocate a&e in these situations but it is such a shame she has waited so long. She doesn't sound well and needs urgent investigating. A&e if her pain is not under control or dehydrated.

I'm not sure if they can help at A&E if she's already under the care of a specialist for investigations (even if they've never met)? I thought they'll just turn her away but I am also really worried about just the fact she can't get further bloods done til next week and maybe they could at least get that done and an MRI or something? I doubt she will be very happy to go and wait for so long when she feels so bad anyway.

Do you know what the bloods tests show,? You mention scans. Did you get the report?

I think it's very likely to be quite advanced cancer to be honest. Even so she deserves a diagnosis so she can get actual care, medication and a plan.

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

Technically, but honestly bollocks to that. She’s not getting any help and as much as it’s not supposed to be the case, people do get referred on via A&E in these situations. It’s pretty obvious that advanced cancer is a possibility and she’s in a bad way. I wish a lot of us didn’t know of scenarios where exactly this has happened but we do.

It sounds serious. Can she afford further private treatment? If not I would say A&E and say it’s worsening, they won’t send her away.

I was referred on the 2 week cancer pathway twice for different reasons and both times had scans done within 2 weeks so not sure if it’s right that all she’s had is a phone consultation? Definitely get her to look into this.

She cant keep anything down, is vomiting, dehydrated and in pain

That IS a reason to go to A&E

I'd ring nearest Spire and ask if she can come in immediately for urgent consultation. They will do bloods and any scans needed.

In both circumstances both were very unwell to the point that I wasn’t sure they were going to last the night - my Mum for example kept feeling suddenly very faint and having chest pains; she’d had some tests done and was waiting to see someone for an MRI but she was just so unwell I bundled her up to a and e and they ran some tests and found her potassium levels were super low, so they did some tests and arranged for her to have an infusion but it still didn’t raise it so they kept her in to find out why; did lots of tests and that’s when they found the bowel cancer. You do really have to be pushy though.

This.

No. Still waiting for the CT results - I assume they'll go to her consultant and given he ordered 2 X tests I'm not sure if they'll wait til both sets of results or not?

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.

Without a diagnosis, it has to be A & E if she is suffering constant discomfort and vomiting. They might find the missing piece of the jigsaw.

A&E probably won't help tbh I was sent away with my 13 year old last year hevwas in total agony we were told to return if the pain continued I did they looked at me like I shat on a plate and told them to lick it sent us home saying just take paracetamol what do you expect US to DO? Took six more visits to the Dr's to get a plan of action still struggling with it today

Not sure on finances but between us we could find it.

It was definitely 2 weeks from referral when she had the telephone consult then a further 2 weeks for the scan, stil waiting results, and another test which hasn't happened yet.

My Dad became unwell last year, and his GP was horrific. Dismissed all his symptoms as long covid. It was only when Dad collapsed at my sisters house that I made her call 999 and Dad was admitted to hospital (after a horrific 36 hours in A & E). Turns out that his liver cancer was so advanced that he was passed immediately to palliative care, and we had to push for his care every step of the way, even the day he died.

The only way we got help was finding out his Consultant's secretary's number and ringing her. Daily. And emailing. You have to push push push.

Do we know which part(s) of her were scanned? Neck? Abdomen?

High calicum suggests bone cancer. I agree pestering the consultant secretary. It's the only way forward