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?

Again thank you all.

She's agreed for me to take over discussions with doctors and I'm going to speak to her GP first thing tomorrow about a few things, including reviewing her medications, confirming who is actually responsible for her care right now and getting details of where her suite of tests are currently.

She has accepted that if we aren't further forward after tomorrow then we'll go to A&E.

@Jiggery I do appreciate you trying to help. I'm going to DM you in response to some of your questions if that's ok

Sounds like a good plan

Hi @Worriedandpowerless I’m glad you’re taking over talking to doctors and your sister had agreed to try A&E. I agree with the advice you’ve had to use A&E and to call the consultant’s secretary (a trick I learnt from my Mum, who was a doctor herself) so won’t repeat all that.

But to add two more things:
1/ you asked about getting tests done privately. Yes you can do this and it can be a really cost effective way to speed things up. Your sister stays under her NHS consultant’s care, but you can get diagnostics done faster. Don’t just arrange it yourself. Ask the consultant’s secretary or the consultant themselves how to arrange it so that they have access to the results and have confidence they were done right . Every time they suggest another test ask “is there an option to do that privately”? They won’t suggest it. You have to ask.

2/ it sounds like your sister is struggling to take basic care of herself. Which isn’t surprising given how ill she is. Can you stay with her for a few days or weeks? Or have her stay with you? You can make sure she is eating, drinking, is clean and comfortable. Accompany her to any and all medical appointments, including phone calls. Those basics aren’t a cure, but they could make a big difference to whether this is something she gets through or not. I know it may not be that easy, but do consider it if she is this unwell.

I wish you and your sister all the best and hope you get some progress this week.

Yes, of course, PM away!

Here, I'd say that the best you can do is speak to the GP and push for earlier blood tests and a review of the tests done to date.

No one should wait 2 weeks for an urgent blood test.

Be wary the GP could fob you off again. The phone number for the consultant should be on the NHS letter for when she had her last appointment. The GP is likely to say it is out of their hands if a consultant is involved. So I would make sure you find that letter and ring the number from there.

Your situation would be different though because you were very ill and in resus. Very often when scans area arranged for an out patient (which OPs sister was at that point) the date is arranged and you get a call or letter with the details. The scan results are then sent to the secretary of the relevant consultant to be viewed, added to notes and await the next booked appointment. At this point they may order further tests or bring the appointment forward.

Yes push push push against the GP some act like they are god's and any referal comes out of there own pocket. Your sister need a urgent care.

There is people saying the NHS is on its knees yes it is but there are many GPs acting like they are god's and gatekeeping what people need. Every day there is a story where people have been fobbed off by GPs and it's turned out to be worse.

My mum's GP was that arrogant he said she couldn't have a type of cancer because she had had a hysterectomy, even though a quick Google told me he was wrong. And if people think I'm angry yes I am.

Maybe she needs care urgently but urgent-care-venue may not be place to get it.

It's tough when very ill to take information in & understand what health tests are figuring out & what is still unknown, and what are best selfcare steps. I'm glad you're getting involved, OP, that you have sister's permission to advocate for her. Hopefully this will bring some clarity about her current status and best next steps.

I hope you get somewhere with the GP today. It’s good your sister has you to fight her corner.

Hope you have managed to get some sort of help for your sister today

Ditto my dad. My Mum just "knew" he had cancer but our GP (who was - then - a family friend) kept brushing her off: "oh you know Fred, he's always had a dodgy chest..." Among other symptoms, he had totally lost his beautiful actor's voice weeks before. That's not normal is it?

In the end, Mum dragged him to the consultant's office and refused to leave until he was seen. They operated that night.

As I said people are praising GPs in past, but a lot are bordering on negligence they really are, its fine to refer someone if you don't know but it's getting all to regular people are fobbed off for genuine symptoms.

Thanks for those checking in. A little progress today with the GP prescribing better antiemetics and admitting her to a day unit for fluids and immediate blood tests.

The search is on tomorrow for the consultant who is responsible for her tests as it is not recorded anywhere.

Glad you’ve made a little progress.

can I suggest that you get power of attorney sorted for your sister (and yourself while you’re at it). At the moment while your sister is happy for you to do these things on her behalf, you may not have the legal right to do this officially (I’ve not seen who else she has). There is a considerable wait for this to be granted atm but it’s well worth getting it sorted even if this turns out to be something very treatable.

You could try the department where her test in a couple of weeks time is booked and ask them the name of the consultant on the request form.

How's it all ok OP?

I've not read all the comments so not sure if anyone has suggested PALS. Call/email them and start a paper trial.

Hope your sister gets her treatment needed very soon.

https://www.check4cancer.com/private-cancer-tests

These guys do very speedy checks for certain types of cancers and just found on the phone they were very helpful at suggesting different routes to go down. Didn't cost as much as spire etc either.

How are things now @Worriedandpowerless?

Lots of tests and almost daily hospital visits. She now has a probable cancer diagnosis which is getting the ball rolling with more tests and being discussed at interdisciplinary meetings.

So, in short, the persistence has paid off and is now being taken seriously. Should know what type of cancer and severity soon.

Thank you all for your help and advice.

I’m so sorry about this.

My mum suffered for over 12 months. Multiple visits to the GP and fobbed off.

She was eventually diagnosed with stage 4 cancer and died 3 months later.

I wish she was more pushy.

I hope your sister feels better soon.

Oh OP I’m so sorry. I was crossing my fingers for a parathyroid issue, but given her symptoms cancer was a strong possibility.

Well done for being there for her in her time of need - great sister. 💐

You must both be exhausted. Well done OP. I hope you can get a supportive treatment plan in place.

And then you may wish to feed back to the many professionals who fobbed you off. If you and your sister have the energy.

Well done for being persistent x

So sorry to read this @Worriedandpowerless .