Is this a normal delay in A&E (stage 4 cancer patient)

[IesuGrist1975]

Brief summary-
should a stage 4 cancer patient with actue ischemic colitis have to wait over 72 hours for a bed on a ward and have not seen a Dr since Friday morning? Much longer version below…..

Hi, I’m just looking for some guidance on what is normal for A&E or if we should be pushing for more for my parent.

A bit of background my parent has stage 4 cancer (pancreatic) and their chemotherapy regime is brutal and this cycle’s side effects have caused awful diarrhoea leading to awful cramps which needed a trip to A&E in an ambulance at 2am Friday morning. They were quickly given a CT scan and told it’s ischemic colitis (can become very serious!!) and that they would not be able to leave the hospital until the cause is found and treated- this all happened before midday on Friday. Initially they were in resus before their bed was moved the corridor and finally to a side room after we complained that they were severely immunocompromised because of the chemo and outside a toilet in the corridor was not the best place.

Since Friday lunchtime they’ve not seen a doctor, just had obs done by various nurses and when asked when they’ll be moved to a ward or seen by a doctor have been told there are no doctors or beds available as it’s the weekend.

The whole thing is complicated by the fact I live 300 miles away in England and they are in Wales so I can’t support by being there all the time ( i need to keep time off for when things get more serious 😓). I drove down on Friday evening and stayed until last night and during that time I had to ask for pain relief and also if they could have anti-diarrhoea medication as the pain and trips to the toilet were becoming really concerning.

I know the NHS is stretched but their experience during this stay is a million times worse than my elderly in-laws have experienced recently (not in. Wales). Is this normal and to be expected?!?! Even as a stage 4 cancer patient?

This is all new to us as my parent was a healthy fit (as far as we knew!) 64-year-old last spring, then was fobbed off for 5 months as having heartburn/ anxiety/ muscle aches, followed by a CT scan that no-one looked at for 3 months despite it showing a pancreatic mass. When the diagnosis was finally made at the end of December it had spread to the liver which meant there was no chance of the tumour being removed. I’m not sure if the delay in diagnosis is clouding my expectations of how they should be treated in A&E or if what is happening now is just to be expected in some healthcare trusts?

Sorry, if that was a massive waffle, my head is all over the place and I don’t know what to do to help.

They can't magic beds out of thin air

We've had alot of this through A&E with unwell parents on the last 4 years and 72 hours is particularly bad. Usually get to a ward between 12 - 24 hours after going in. In England.

It's obviously not ok whether it's normal or not. Unfortunately Friday is the worst time to turn up at A&E as you can often wait until Monday for the specialist doctors to see you and make a plan. 72 hours waiting for a bed is awful but the hospitals are stuck. There are just too many patients plus a lot of staff off sick at the moment due to higher than normal levels of viral illness in hospitals. Sorry you're going through this.

Sadly it’s totally normal nowadays. Is it acceptable? No, of course it’s not.

Hospitals are at breaking point, there are just no empty beds to take patients from a+e.

Oncology services vary from hospital to hospital and some will only have acute oncology provision within core hours.

Yes, it’s rubbish but that services are not 24/7 but there are just not the staff to do more. Trusts are completely overspent and many have recruitment freezes.

Op, for your dad, I would ensure that he’s keeping adequately hydrated. I’m not sure if he’s allowed to eat and drink but otherwise he will need a drip. If you can stay with him I would as you can advocate for him.

I’m sorry you are in this situation. Believe me staff aren’t happy that services are like this.

i hope he gets sorted soon .

My relative had similarly poor treatment from the NHS in end stages of pancreatic cancer. It is a horrible condition.

I know you said you need to save your leave for when things get worse but are you sure that’s not now? My experience was that once my family member went downhill (also started with bowel issues), the disease progressed very quickly. If you could get some compassionate leave now might be the time to take it. I am so sorry you are going through this.

Hello, sorry I posted one run. Loads of bedtimes and kids stuff to get ready for school.

I don’t know why I didn’t say which parent, it’s my mum. They are in Wales and it is their third round of chemo. Each round has resulted in been multiple calls to the 24 hour oncology line and the side effects are getting worse each time. They were who advised ambulance early hours of Friday. This is the first hospitalisation that lasted more than 24 hours…

Thank you for all of the kind words and support, it really does mean a lot to read them. It’s such a shit situation and miles away with young children on a job and I just feel so crap to not be closer and be able to support her more.

Thanks for that helpful post, mate 👍

Sorry OP that sounds awful and it must be tough not being able to do more for them :-( whether it's normal or not it's disgraceful. X

Is there any way your parent could come and live with or near you and transfer their treatment?

Oh I’m so bloody sorry. I’m not sure if this is a help at all but felt that I needed to post as your mum’s situation so acutely reflects what happened to my sister. Hers was also stage 4 pancreatic cancer, metastatic to the liver. She also developed acute colitis following very strong chemo, with associated crippling pain and diarrhoea. She was admitted straight away and in the HDU for 12 days; it came close to killing her that point.

As I said, not sure this is helpful. But just to say how serious the situation might me and that if it’s ’normal’ (wtf?) then it’s not the case everywhere and it certainly shouldn’t be. Huge hugs to you, I have so much empathy for what you’re going through and it’s utter shit. I really hope your mum’s condition improves soon x

We’d have my Mum (and SD) here in a heartbeat but they’re not up for that and, I don’t think she’d manage it at the moment. I’m actually worried this is a turning point as I know this sort of cancer can cause a decline in health very quickly. The chemo is very aggressive and because she was in such good shape at diagnosis they decided to try it but it’s ravaged her body over the last 6 weeks.

This sounds like exactly what’s going on with my mum and this is why I’m so worried as the colitis is caused by an area of reduced/ no blood flow to the colon that can become very serious. Sorry to hear your sister had stage 4 PC too, did she make it home after the colitis?

Thank you. Yeah, she did. However, she was subsequently told that the reaction was so bad that she couldn’t have any more chemo. She died about six weeks later. She was also in good shape when diagnosed, hence also being offered the strong chemo that it seems your mum is on. The chemo just ruined her though and really did accelerate the disease. However, without it the prognosis would have been so bleak and she would always have wondered ‘what if?’ if she didn’t go for it (as would we). It’s just so tough. Again, lots of love to you and yours, it really is the pits

Oh I am so with you, the chemo was always worth a try but it’s made her much less well and has removed any QoL and left her house (or hospital) bound.

So sorry to hear this. Where in wales are you? I'm a surgeon in wales, and whilst delays for beds are sadly not uncommon, all our patients will be seen by a consultant on at least a daily basis. I wonder if she's been missed off a list or something as it's really odd that she isn't being reviewed regularly. If I can help I will, I have contacts across most hospitals in wales.

I also work in the Welsh NHS and things are indeed dire. In our trust we have no tertiary services and no dedicated oncology wards. Patients contact oncology triage and are usually directed to their nearest acute hospital either to medical team or A&E. In the hospital I work in patients are frequently nursed outside of bed spaces with no oxygen/curtains etc and we are not as bad as many other hospitals. I am very sorry about your parent - I hope things improve for them soon. They should be reviewed at least daily by medical team even over weekend.

Thanks for your replies @welshweasel and @sproutsandparsnips the healthboard is Hwyel Dda, but the closest hospital to where she lives no longer has an A&E so they’re in Carmarthen.

I should also add that almost every single of the many members of hospital staff she has encountered have been amazing and so kind. It’s just such a shit situation in such a shit time for the NHS.

Hope today will bring some action and answers and I’m going to go down again later in the week.

Yes hywel dda (and in fact your mum's closest hospital) is where I work. GGH A&E is truly beleaguered but I know the staff are great.
Unfortunately your mums story dies not surprise me - there are big delays in ct reporting even if cancer is suspected.
My dad was seriously ill in hospital in the midlands last year and I was really surprised at his good and efficient his care was in comparison.
It must be awful to feel so helpless and I'm sorry for your poor mum