How can she be left like this? Take her back to A&E?

[Fearsheisdying]

Posting for traffic has honestly I'm terrified something is seriously wrong with my Mum and don't know what to do so please be nice.

Last week she started with some pain that she says feels like it's right at the very bottom of her ribs and radiating round the sides. She was in agony, basically screaming with pain so I took her to A&E on the advice of 111. All obs and ECG were normal but the blood tests were abnormal. They were going to do a CT scan but then decided as her obs were ok and they didn't think there was a bleed as no fall/injury, they were not going to do a CT scan there but would refer it to the GP to arrange BUT because of the blood test results and recent weightloss, they wanted it done urgently under the "2 week rule" and from his grave tone, I highly suspect he thinks it's cancer and serious. They couldn't/wouldn't give her anymore painkillers because of the painkillers she's on for severe arthritis but these are not touching the pain.

Fast forward to today, she has been in absolute agony since Thursday and seems worse today and can barely move. She's exhausted and crying/screaming in pain. My sister called 999 today but they said as not life threatening they won't send an ambulance but had to speak to GP within an hour. GP receptionist tried to say no appointments so we couldn't speak to GP but after I explained the issue (and she could hear my Mum crying out in pain) she finally agreed to pass a message to the GP so currently waiting to see if GP will call back today or not. Mum says if I take her back to A&E we'll be sat for hours again and nothing will be done but I can't just sit here and watch her in so much pain and do nothing.

What do I do?! Do I make her let me take her to A&E? Do we wait to see if the GP will call? Just feel so helpless

Well clearly someone failed to realise that whatever they are doing isn’t working because she has been on laxatives for 16 days!

They have to be cautious with laxatives in elderly people and those with bowel obstructions. The last thing your mother needs is a rupture.

Op I think I'd ask for an appointment with the consultant that she is under.
To have a proper conversation about her treatment and what they do next. They must have a limit on how long they can keep her on laxatives.

I think PALS is the way to go- contact them first thing and just be very frank- don't dress up the details of whatyour mum is suffering, her emotional state from worry and stress and the awful timeline as well as the misinformation about colonoscopy and the sendings home from A and E. It's shocking.
My 91 year old Aunt was referred under the 2 week wait with a concern about finding swallowing food very difficult, pain and significant weight loss. She had a phone call 2 days later from a gastro Dr at the hospital to discuss it, a letter arrived the next day with an appointment for the CT scan 5 days after that and a series of xrays of her chest and spine. She had another letter 4 days after the CT scan to go and see a gastro consultant the next week who gave us the scan results- which were not worrying and has referred her to a dietician. Beginning to end took 17 days from first GP visit to results. I was really impressed. What your mum is going through with the NHS is not good enough.

Be firm with PALS. I once had to do that for my mam when a consultant tried to discharge her home on 23rd December, the day after she had been admitted with pneumonia, COPD, aortic valve stenosis and Stage 4 Kidney failure. She could not walk, her breathing was terrible, she was on oxygen continually and was a purpley red colour. Her face and legs were swollen and she couldn't speak.
We had been in A and E for 6 hours the previous day, followed by 10 hours on an assessment ward where no one seemed to know what was happening to any of the patients.Eventually they had found a bed on a chest ward and within 12 hours a consultant decided to discharge her. He told me she was fit to go home and I would not accept that. PALS intervened very quickly when I complained and he came to see my mam again and apologised- claimed he thought her 'circumstances' were different. I said I thought he was emptying beds for Christmas. Anyway, she ended up being in hospital for 3 weeks before her chest conditions were under control again and she could walk and then having to go to rehabilitation for 6 weeks afterwards.

They don't always get it right- particularly at times when hospitals are under pressure. Be firm and polite and don't budge from what you know is right for your mum.

Hope you get something sorted x

Your poor mum. This is dreadful but sadly doesn’t surprise me at all.

If it were me, my first discussion would be with her treating consultant. Collar them when they’re doing the ward round or ask that they come back later. Stand up to them. Question everything. They don’t like being challenged when they’re surrounded by all their hangers on. They treat everyone as if they have zero medical knowledge which, in fairness, most people don’t have. If you don’t understand the terminology, ask them to explain again.

Ask them to explain why they believe the shadow on the scan is faecal matter and not a tumour. If the mass is soft tissue, no amount of laxatives is going to move it.

Ask them if they think 16 days of laxatives is even remotely reasonable. Stress the discomfort and distress your mum is experiencing for what appears to be a pointless exercise.

Ask them at what point they are going to accept that the laxatives aren’t working.

Ask them to confirm the exact timescale for the next steps - further scanning / colonoscopy etc.

Question them robustly at EVERY ward round. Listen to exactly what the consultant says to the hangers on. I have had experience where a consultant discussed the treatment plan for the lady in the next bed at the afternoon ward round. By evening that lady was still in agony and nothing had been done. I took myself off to the nurses station and said I heard Mr Bloggs say XXX and yet you’ve done absolutely nothing. If you don’t sort this out, I’ll be telling Mr Bloggs what’s gone on in the morning. Suddenly they sorted it out. What I’m driving at is sometimes consultants ask for things to be done but it’s other staff/departments who then don’t do it.

Some bowel cleanse regimes eg clean prep are really harsh and not suitable for everyone. OP and her mum should talk to the consultant but it's not as easy as just blast her through with the strongest thing going. What I was trying to say is that whatever regime they use it will be fairly unpleasant and undignified, and sadly pooing yourself is par for the course.

Horrendous. All of the above. Good luck OP

Oh OP, your poor mum (and yourselves having to sit and watch this). If it is a blockage (be that impacted faeces or some sort of growth), surely logic defies laxative use to pass it by now as it's been there so long... I would expected some sort of surgical investigation by this stage, so that the mass could be biopsied or removed.

A family member had a blocked bowel and needed a surgical removal/resection.

Hi OP, I can understand your fear and frustration and I would feel exactly the same. To try to reassure you though, even though 16 days feels like forever, bowel cancer tends to be very slow growing and so the plan probably is to wait until a clear colonoscopy shows more. I had one and was in hospital for three weeks with daily laxatives, enemas, suppositories, as well as all the bowel prep stuff. It’s not pleasant but they really do need to sometimes take this approach to get a clear picture.

I’m not trying to diminish how this must feel for you though and I think you’ve been given good advice about speaking to the consultant and asking as many questions as you want. Can you be there for wars round?

Wishing you both all the best.

If the blockage needs to clear before they can get a clear view what would you have them do? Because the enxt step is exploratory surgery which they won't want to take the risk with while she's managing. They're not witholdong a test, they can't do the test.

What would you have them do?

@Forgooodnesssakenow I’ve just had a colonoscopy and taken all the bowel preps. Just wondering if you could explain why for this lady they can’t do a colonoscopy up to the point of the blockage and view the blockage with the camera and take a sample? Thanks

Surely if 16 days of laxatives hasn't cleared the blockage the time has come to recognise that more laxatives are not going to do it? You can hardly say OP's mum is "managing" when she is in hospital, getting no better and having to take painkillers all the time.

Thinking of you and your Mum @Fearsheisdying . I won't add to the similar stories as everyone is different but agree yes be proactive.

And you think the medical professionals haven't discussed the other options available? Their relative risks and benefits? You think they're just going, no, more laxatives lalalalalalla?

For many elderly patients more invasive procedures and the risks of those, infection, shock, blood loss, anaemia, poor healing, blood pressure changes, meds the patient takes such as diabetes meds, blood thinners etc can all complicate a decision. Also the risk of some cancers metastisising if incorrectly operated on. There are many good reasons to be conservative in their approach especially with a very deeply person. And no, 16 days isn't that ridiculous while she's an in patient with constant monitoring and available medical care in emergency situation

@Forgooodnesssakenow and none of what you mentioned in your post needs to be communicated/explained to the patient and their daughter in your opinion. The culture of zero communication because the "thick and scummy public" don't need to afforded the respect sentient beings deserve needs to cease immediately.

@Fearsheisdying request an urgent meeting with the consultant in charge of your mother's care noting there has been zero information or explanation to her or you. It is simply not good enough. Make the request orally with the ward sister and let her know you will be noting your request and conversation with PALS.

You would think they would make a plan for your mother to ensure she is on the correct pathway as soon as possible. It really does underline the fact that the problems are about organisation and management rather than resources.

Given that they were telling the patient confidently that she was going to have a colonoscopy on Friday which didn't happen, it's difficult to be confident that they are following a carefully considered and discussed plan.

No-one is saying that 16 days in hospital is ridiculous. What is difficult to understand is continuing to rely on laxatives when 16 days of laxatives haven't cleared the blockage, which would seem to suggest that either it isn't faecal or it isn't susceptible to laxatives.

Ask for a proper chat with your Mum’s consultant or senior registrar. Is she on a surgical or medical ward?
There will be thought processes which you’re not aware of that have gone on and might (hopefully) be reassured by having a more in-depth chat.
The 2WW re cancer diagnostics makes it seem like time is of the essence but in reality there’s often 2 months suspicion->diagnosis->treatment and with your Mum being so poorly and needing oxygen when she first came in they needed to stabilise her & see if she needed urgent surgery. Now it seems she doesn’t need urgent (like immediate/next few days) surgery and is stable she probably doesn’t need to be in hospital and need to make room for the people who do need urgent surgery if you see what I mean.
Definitely do need to be careful with laxatives in elderly people with bowel obstruction because the poop can start coming up the other way or can get bowel perforations or extreme distension etc - wouldn’t want to create new problems, or if lose too much fluid through loose stool low blood pressure can cause heart problems.
Dont forget that lots of pain relief like anything Louis like codeine or morphine etc can cause constipation so it’s a balancing act.

There’s a thing called overflow diarrhoea as well where watery poop goes around the blockage but the blockage is still there.
Def encourage your Mum to keep up her fluids because that really helps.
Just need to speak to someone who can explain what’s been going on and the thought processes and allay your fears or you can maybe tell them things they haven’t thought of. Surgeons are very busy because they have to operate most of the day after ward round but they or their senior registrar or trainee should come and chat with you. I’d do that before PALS but PALS if you’re getting no luck x

Arguing about what you think should happen is hardly beneficial to the OP right now.

This is what the general public don’t know. If a orients been on a ward 16 days and had investigations they’ve been discussed on ward round and subsequent board round at least 16 times and with radiologists etc.
Its not that anyone thinks the public are thick and scummy, staff are just busy and some people don’t want or need to know.
Definitely ask, it’s really not unusual at all and I’ve always seen it as lovely when family are involved in patients care.
All health care professionals are actually human and has their own Mums and Dads, nans grandads, partners children etc who have been in hospital.
IME lots of medics and nurses went into the job after them or someone close to them suffering with significant ill health and wanting to make a difference x

God no, of course it should be communicated, my son is an inpatient regularly with seizures and it's awful, sat in a hospital feeling like a number, not feeling heard. I simply mean jumping on the medics for not knowing what they're doing isn't helpful and unlikely to be true and makes the op feel more afraid for her mum.

I AM the scummy public, who fights to ask questions and will demand consultants come and speak to me. The people saying contact PALS, ask questions they are absolutely right, complain definitely but I suspect you'll find the doctors are as frustrated by inability to do the test, if not just through compassion then because they'll be constantly rejigging things to get the test done and not getting anywhere.

Apologies @Forgooodnesssakenow I read your post as though it was being written by an HCP telling us there was lots going on we didn't know about.

Sorry to hear about your ds

Those of you who keep referring to the patient as elderly, OP's mum is only 62. Is that genuinely considered elderly in medical terms? I know many 62 year olds and definitely wouldn't describe them as elderly.

@BrendaBlessed If she was still able to claim state pension at 62 you can bet that they wouldnt be calling her elderly on here. It would be all "why isnt she still working 62 isnt that old. I wont get my pension at that age" etc etc.

I assumed older to be honest, that's said my mum died in her 50s and was older than most 60 yr olds in health terms, if you know what I mean. Ops posts read like her mum is elderly or infirm, op is your mum in poor health in general? My mum had a lot of underlying health conditions. I still have a lot of issues with the care she received at lots of points from GP onwards but she wasn't a typical woman in her 50s either.

Well I'm 62 and working full time and hope I would be reading the riot act at the hospital about lack of communication and action if I were the op's mum. My state pension is payable on my 67th birthday.