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?

If she absolutely won't go to A&E ring 111 and tell them what you have told us, especially the high calcium as they might be able to look and see what her last results actually were and make a decision about treatment for it.

She needs to be seen, so take her to A&E - that's what's what they are there for.

As someone fairly regularly at A&E, with a permanently poorly DH, usually requiring admissions, I would say about 6am on a weekday is quietest ..

Good luck.

Surely it depends on the nature of the diagnosis thus far as to what specialist input is required. Any one can order blood tests and review, it does not have to be a haematologist although the requesting consultant could ask for their input.

I work on a cancer pathway and it really surprises me some of the nonsensical reasons GP refer patients with then you get something like this and so many red flags, we would do a telephone assessment then offer a CT within the week and have the results back the same day!

@DotAndCarryOne2 If someone is seeing consultant privately, they usually just send the person to another room in the hospital and get bloods done there and then.

It's perfectly simple. The consultant can request any blood test they want. A nurse usually takes the blood.

A haematologist is someone who specialises in disorders of the blood.

If that was needed, the first consultant would refer the patient on.

What a worry, when she is being sick is it just normal colour and how often is she being sick? Is she fainting?

@Worriedandpowerless I have gone out of my way to try to help you with advice as to how the system works, for cancer pathways, as one close family member is still having treatment.

BUT unless you engage and say what cancer is suspected, or who she saw ( the type of consultant) it's pointless trying to help.

A haematologist that you asked @DotAndCarryOne2 about is not who you need. They deal with blood cancers. They don't do blood tests to diagnose something unless the GP or another consultant refers you to them.

The starting point is a NEW CONSULTANT -or going back to who she saw before. In theory you could whisk her into a top London private hospital and get scans and blood done in one day.

Without knowing what she was scanned for , or what's suspected, no one can offer more help.

All good advice - but why should we need to do all this keeping the pressure up and creating a paper trail? - it is a complete disgrace that the NHS is in this state. Before my OH died I had a year or more of non-stop battling to get him the care and funding that he needed. I had previously worked in the system - I knew which buttons to press - I was fit - I had my head screwed on. What happens if you are old, or not so bright intellectually, or completely without knowledge of the system? How often do we hear of people having to engage in battles for NHS and other help? - parents trying to get help for their children with SEND are in the same boat. Our public services are down the pan.

Rant over - but I still feel traumatised by those battle 3 years later, alongside the grief.

I agree you should go to A&E and hope that your sister is admitted.

If I were you I would go to A&E and lay it on thick. I wouldn't really care whether that was the correct cause of action - I'd be distraught and terrified and I would want a medical professional to actually look at her and see how ill she is. I'm currently receiving treatment for cancer and have had nothing like this experience. I was seen the next working day under the 2 week wait and told that day that it was very likely to be cancer. Admittedly I did have far more clear cut symptoms but I can't believe she is just being left in this state.

My mother in law had a similar experience. Fobbed off twice by her GP who kept telling her it was nothing, mild illness, menopause, pneumonia... Why would a healthy 56 year old suddenly develop pneumonia? I went to her house after a nurse had seen her that morning and couldn't believe the state she was in. She was mostly sleeping and sounded like she couldn't breathe properly. I called her partner and said he needed to take her to A&E or I'm going to call an ambulance. When she got there they found that one of her lungs had collapsed, the other was filled with fluid and her organs were starting to shut down. She was desperately ill. They also finally looked at her properly and found out that she had a rare, aggressive form of lymphoma. I couldn't believe that a nurse had seen her in that state and not thought it was an emergency. I think you need to start kicking up a fuss and getting pushy, who cares if it is not the usual way things are done, she's clearly extremely unwell and the NHS is not functioning properly right now so you so advocate for her as hard as you can.

Absolutely this.

The OP’s sister’s symptoms and results have more red flags 🚩 🚩🚩than Moscow on May Day. Doctors or any health professionals should be falling over themselves to figure out what’s going on. It’s pathology with clues that lead to differential diagnoses. Figuring out these things is doctoring. It’s sickening to think people who have had any interaction with OPDSis aren’t doing anything. A GP who knows she has a high calcium but does nothing? Negligent. A scan that might show something but no one knows either way or does something if it’s pathology? Negligent.

It's awful.

Put everything calmly in writing. Symptoms, weight loss, results etc.
Say you fear malignancy and need urgent help. Write something like, ‘could you confirm that this is not a serious illness that needs immediate attention?’

Send it to the consultant’s secretary and copies to the medical director and chief nurse of your Trust. And also contact PALS.

Good luck.

Oh and I needed to go to A&E last week and ended up there at about 6.30 on Monday morning. It's the quietest I've ever seen it, so perhaps she won't need to wait so long if you can convince her to go at around that time.

The main thing to be aware of if going early is that shifts change between 7/8am so there may be a lack of continuity of care. Also consultants may not be onsite during antisocial hours, so rely on junior doctors and ACPs.

I'm so sorry to hear about your sister. It sounds so worrying. She's lucky she has you to advocate for her.

Good luck with the consultant tomorrow. 💐

OP I cannot stress enough that you need to be the ‘difficult relative’ now. Unfortunately, being a pain in the neck gets results. It’s difficult if you are not used to that role but it’s time to cause an assertive (not rude) fuss.

You need to ask for clear answers and a timescale. Copy letters everywhere. Use your MP if needed.

As a clinician on the ‘other side’ of where you are, I promise that it works. It’s horrific that this is needed but this is where we are in our NHS.

My god that’s awful OP I’m so sorry!

We need to face the fact that the NHS needs some radical changes desperately.

Not nearly the same level of worry but my DH has struggled to wee for some time now, and it hurts when he does. He can stand there for 5 minutes waiting to see.

Hes an also a fucking idiot who didn’t go to the doctor for ages thinking it was a water infection that would pass and took cystitis relief (nob). We eventually did, they told him to come back in 2 weeks and he had a blood test. The blood test came back as ‘normal’, he got the info via text and that was it. He had to beg them to do something else because it’s become unbearable now. It’s inhumane to treat people like this.

OP I cannot stress enough that you need to be the ‘difficult relative’ now

This!!!

It’s so sad, and we’ve been gaslighted through COCID into thinking NHS staff should be treated like saints, but sometimes kicking off is the only way to get what you need. It’s disgraceful people have been painted into this corner but you have to be demanding and difficult now.

I had been very unwell a few years ago and had a linked consultant. My GP repeatedly sent me to the consultant and she was awful.

The only thing that saved me was turning up to A&E and a lovely nurse took one look and said I wasn't going anywhere until I got some answers. He really must have gone to bat for me and within 2 weeks I'd had surgery. When I explained what had been going on and for how long he was absolutely disgusted by the care I'd received.

I think A&E would be the best place for your sister to go right now.

I know she doesn't want to go to A&E. That's because she's in pain, vomiting and just wants to sleep. But those and the results are the very reasons she needs to go. Fall out with her but get her in a car.

OP you need to start going to appointments with her. For example, you say the nurse who was taking her blood noticed she is dehydrated, but your sister didn't think to mention her abnormal calcium level to her. This nurse was just taking bloods, she won't have checked her full medical history, there was no need. Your sister needs to speak up. If she cannot, then someone needs to do it for her.

She clearly needs someone advocating for her as she is unable to do so herself.

What has your sister done about the ineffective cyclizine? She needs to make a GP appt to review this, she might be able to try something else eg ondansetron. The thing is, how can the GP know it isn't working if she doesn't keep going back?

Rightly or wrongly, if she doesn't start pushing the GP, attending A&E etc, she is basically going to sit at home and die.

We can sit together all day and bitch about how crap her care has been if you like. Or you and her can go to A&E/ push for another GP appt urgently - and keep doing so until she gets answers.

No one needs to 'kick off'. They just need to push for care by actually attending A&E given how much she has deteriorated. No need for aggression towards staff.

I would never advise kicking off at A&E, but atm, anyone who does will get a shoulder shrug, or get less interest from staff who can't cope anymore.

OP where is your sister’s pain?

I agree with others saying to go to A&E. I had similar symptoms and was also fobbed off for months. Eventually was diagnosed with a kidney tumour after attending A&E and begging them to help me. Luckily it was benign although had grown to the size of a grapefruit and my kidney was beginning to fail. I'm fine now but it was a horrid few months.