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Anyone Medical - Awful situation - Please please help

(191 Posts)
PearTreeParty Mon 18-Nov-19 10:36:12

Posting here for traffic.

DF in hospital and we are allegedly at 'the end' but I am not sure if a mistake has been made....

I’ll try to keep the medical history brief, but it’s been eleven long months so distilling to the essentials is hard.

DF admitted to hospital due to shortness of breath. Fluid discovered around his lungs.
Lungs drained of litres of fluid, and sent home after a few days.
Within 24 hours, shortness of breath returned. Back to hospital
More fluid build up. Drained but kept returning. Doctors say that are going to think about a solution.
Four weeks later (regular draining) they are still ‘thinking’. They now say he has picked up an infection which makes some of their ideas more challenging.
Seven weeks of nothing happening other than DF weak due to prolonged stay, fluid on lungs and infection.
Doctor announces he will try to operate to glue the tear that is allowing fluid in – yay.
Hospital were surgery needs to happen has no beds, we have to wait. Meanwhile DF has to stay put (seems to be getting worse).
Hospital says he now has a kidney infection. They give him water tablets to try and flush it out.
TWELVE weeks later, there is a bed. He is moved.
New hospital says that he is too weak to operate due to being in hospital for 12 weeks. He has to get stronger…
DF rallies and tries to eat/sit up etc to get ‘stronger’. Water tablets continue
Hospital tell us that the water tablets weren’t a ‘great idea’ as they have not helped with the fluid. Not sure if they can operate.
He is returned to original hospital with no plan and a definite kidney issue.

At this point, I can’t go into everything that happens but cue 8 months of tinkering and experimenting with tablets and two ‘back and forth’ between hospitals where ultimately nothing happens.

Fast forward to two weeks ago. DF now very weak. Multiple bed sores, fluid on lungs and around other organs, kidneys very weak – wee very brown and minimal.

We keep encouraging him, telling him they know what they are doing, keep strong etc etc. DF trying to be a trooper but very tired. Odd spurts of appetite and energy. Perfectly coherent, frustrated but keeping the faith.

Two Monday’s ago, we went to visit in the morning and he was completely changed. His pupils were dilated, he could barely move and his speech was almost completely gone – like he had a huge tennis ball in his mouth. It was immediately apparent that he had suffered a stroke. I asked the nurse what had happened and he said he didn’t know. I asked for a Docotr but he wasn’t due till the afternoon. I found the head of the ward and told her that he had clearly suffered a stroke and was told that there was ‘’no record of this happening’. She wouldn’t look at him.

I waitied all afternoon for the consultant to do his rounds and when he came he examined DF and said if might be ‘thrush’ making his tongue fat…. I pointed out that he couldn’t move, and his pupils were fixed and dilated. It was also completely obvious that the speech wasn’t caused by thrush on his tongue (although I believe a tongue can swell as a result of a stroke). He was struggling to form simple words and hugely frustrated. They would not concede he had suffered a stroke or take him for a scan.

The next day he was worse. No speech. I told them he was worse. Nothing happened. This went on for five days. On the sixth day they scanned him and said it wasn’t clear that a stroke had happened (even though my DF is now ‘locked in’ unable to talk and now unable to see.

Eventually someone said in passing (rather than formally to us) that yes he had suffered a large stroke about a week ago followed by a series of smaller strokes so they would start administering blood thinners (too late obviously).

DF is now just lying there unable to communicate, see or move.

A week ago, they told us his kidneys had failed completely and there was a build up of potassium that would eventually cause his heart to stop. We asked what our options were and were told the kindest thing would be palliative care. We were already angry but in our devastation agreed to what ever was the least upsetting for DF at this stage. Last Tuesday, they took the fluid drip away and withdrew all the treatment they were giving him and told us it would probably take a few hours. A priest came. It is now Monday. He is exactly the same. Locked in staring at us. He has not died. His breathing is steady. No doctors come in to the room now because he is on ‘palliative care’ but I am terrified that they have made a mistake. Because of what has happened, I have no faith in anything that they say and I ask the nurses what they think and they shake their heads and say that what is happeing is ‘terrible’.

I don’t know what to think. I love the NHS, I am not interested in suing or trying to be litigious but I am scared to death that DF has had no fluid for 6 days now and this may be a terrible awful mistake.

Does anyone medical have ANY opinion that will either spur me to demand he is re-examined or give me some peace of mind? Thank you.

TinklyLittleLaugh Mon 18-Nov-19 10:42:47

I am not medical in the slightest but I didn't want to read and run. Wishing you strength to get through this terrible time.

thelionessqueen Mon 18-Nov-19 10:43:01

I have no answers but just wanted to send you a hug xx

BigbreastsBiggerbeard Mon 18-Nov-19 11:09:43

So sorry to hear what you're going through. Could you contact the PALS service at the hospital to communicate with the doctors on your behalf?

I can totally understand why you have little faith in them after all you've been through.

Wishing you all the best.

BigbreastsBiggerbeard Mon 18-Nov-19 11:14:43

And though your DF's comfort is paramount here, and I understand that you're not interested in suing or anything, it's appalling that his stroke wasn't acknowledged sooner. Especially after you raised that possibility with them.

Having dealt with hospitals when both my parents were at the end of their life, I know how horrendous it is, attempting to do the best for your loved ones when getting information from the medical staff is like trying to get blood from a stone (at times).

I found the PALS service very useful at times.

Good luck.

Muchtoomuchtodo Mon 18-Nov-19 11:21:41

So sorry to hear everything that your family is going through.

Your DF will still have a named consultant so you could ask for a meeting with them and with a representative of the palliative care team to discuss what the actual problems and care plan is.

If this isn’t possible, then get in touch with the PALS team - google for their details.

meroyah Mon 18-Nov-19 11:23:09

Is this hospital in the UK?? I am finding this shocking to read.

Please make a formal complaint regarding his care, bed sores from not being turned or dressed, stroke not being acknowledged sooner, denied and the nurse caring for him seemingly unaware it's happened at all?? How can a nurse do their job if they don't know what they're facing?

So sorry to hear OP, please lodge a complaint. This is not acceptable, this is neglect.

Toddlerteaplease Mon 18-Nov-19 11:27:19

I'm a nurse and agree that his treatment has been shocking. Kick up a fuss. Go to PALs. It's amazing how quick the ward manger will get involved, when PALs get in touch.

babyinthacorner Mon 18-Nov-19 11:30:34

Definitely contact PALS. I’m so sorry you’re going through this, I can only imagine what it’s like. My good friend is a junior doctor and unfortunately all I hear from her is that they are at crisis point and are literally doing everything they can but systems are failing all around them. It’s heartbreaking on all counts. Doesn’t make it any easier for families like you who are suffering, I know. I hope you get some answers. You are in my thoughts and prayers x

PearTreeParty Mon 18-Nov-19 11:34:18

Thank you all.

We did contact PALS about four months ago after endless inertia and lack of clarity/diagnoses, but after a brief bit of engagement with the consultant (we had a meeting the outcome of which was 'we are doing our best'), nothing really changed.

In my heart of hearts I know that had he been treated immediately for his stroke, they might have prevented the strokes that followed and he would still have some speech and his vision. This is eating me up and is compounded by the refusal of anyone to acknowledge it.

A nurse has just come in with some yoghurt. I asked why she was bringing in yoghurt when he has had his drip removed and is waiting to die and apparently has now swallow reflex and she said she 'wasn't aware and thought he might fancy it'.

How is she not aware? This is just fuelling my fear that they are so un-joined up that they could be making a huge mistake and he might not need to be left to die...

And to the person who asked, yes UK. London.

Lostintransfixation Mon 18-Nov-19 11:46:08

So sorry OP. This is truly appalling. I am without words. I hope your DF receives some comfort and that care is at least adequate. Hugs

itwaseverthus Mon 18-Nov-19 11:52:00

This sounds horrific op! No diagnosis really in all those months and not informing you of a massive stroke? Who was the doctor who casually informed you that yes it was a stroke a week prior? Could you dig a bit more as to who they are, why they didn't inform you and indeed the ward?

Gosh I feel for you all. This is horrific.

itwaseverthus Mon 18-Nov-19 11:53:25

The reason I say about the doctor who casually confirmed the stroke is, if you can get some confirmation that he knew but it wasn't on your df's notes and the family were not informed, it will help you to insist on a hospital move where there is a chance of at least compassionate palliative care if not active treatment.

Puddlelane123 Mon 18-Nov-19 11:54:55

A terrible situation for you to be in OP and I wish you every strength in getting through it. If this is as you describe it is truly shocking and represents inadequate care to the highest degree. In the longer term, if strength allows it, I wld be asking for a full investigation into how this level of negligence and neglect could have happened. I would also contact your MP and the CQC. In the immediate term, I would be asking the Nursing Staff to bleep the clinical site team and insist on talking to the Matron / Nurse in Charge of the hospital to make an immediate plan of action for your father’s care. There is so, so much to take issue with here in terms of nursing / medical ‘care’ and general clinical ineptitude that I am genuinely shocked and it should not be allowed to continue unchecked a moment longer.

EleanorReally Mon 18-Nov-19 11:55:57

i am so sorry
wishing your all strength

Oliversmumsarmy Mon 18-Nov-19 11:55:59

Unfortunately unless you threaten legal action then this is the NHS.

Friend who would have died in childbirth only got the help she needed because her husband threatened to sue them if anything happened to his wife and started taking names of those that were in the room.

I would make sure that you get all his notes and start taking names and threatening to sue.

It might at the very least stop this thing happening again to anyone else.

Unfortunately it actually doesn’t surprise me which is either really frightening and really sad

Butterfly02 Mon 18-Nov-19 12:04:28

The care seems very disjointed - nobodies communicating with each other.
I think as your priority quite rightly is to make sure your df is comfortable and getting the bast care I would:
Contact Pals they can at least put you in touch with the right managers and it may be the wake-up call the medical staff need,
I'd request a multidisciplinary team meeting to discuss care needs,
Discuss feasibility and appropriateness of being tranafered to palliative care unit or hospice or home with the right package of care,
Is subcutaneous fluids suitable?
Is df on the right pressure relieving equipment and regime?
Since dfs deterioration has his care plans been updated and activated?
Has pain been assessed since the recent change of health?
I'm really sorry your going through this situation at this point in time I would your energy needs to be put into spending as much time with df as you see fit.
Down the line you may feel very differently you may wish to make a formal complaint in order to make sure this disjointed care doesn't happen to others/ practice is changed or so you can find out the true facts and events (none of this is relevant now but it may be needed as part of your grieving process / closure to what sounds like a traumatic year). For now concentrate on the present and your df but if anything you think you may want or need to know about in the future take photos, make notes and file away incase you need to revisit it down the line. Also may wih to consider trauma / bereavement counselling.

thenightsky Mon 18-Nov-19 12:05:48

This is truly awful and deeply shocking OP! Can you demand a 2nd opinion at all? I think the pp who suggested threatening litigation is quite correct. It sounds like the only route left for you now. I'm so sorry. sad but also shock.

Sipperskipper Mon 18-Nov-19 12:08:55

Have you seen anyone from the hospital’s palliative care / Macmillan team? I think you would really benefit from their support - you can ask the ward nurses or doctors to make a referral to them. (I’m a Macmillan Nurse, and would definitely be involved in your dad’s care if he was a patient in our trust.)

Wishing you all the best.

SchadenfreudePersonified Mon 18-Nov-19 12:25:49

Have you seen anyone from the hospital’s palliative care / Macmillan team? I think you would really benefit from their support - you can ask the ward nurses or doctors to make a referral to them. (I’m a Macmillan Nurse, and would definitely be involved in your dad’s care if he was a patient in our trust.)

I would second Sipperskipper

Speak to the team. Locked-in syndrome is truly dreadful - if your DF has other serious health problems, and is very elderly then it may be they they are administering palliative care now to enable an easy death - though this should have been discussed with you first.

Please don't think that this is because they don't care - I am sure they do, but often the treatment required to keep someone alive, when death is imminent anyway, is very distressing and often painful for the patient. I suspect it's a failure to communicate, but whatever transpires I hope you get the answers and the support you need. When you love someone, there is never a "good time" to lose them, so my heart aches for you.


Reastie Mon 18-Nov-19 12:26:33

Op I’m so sorry for this situ.

I’m not a medical person but I think for your own peace of mind you need to insist a consultant visits and/or contact pals NOW. I know you might not trust them but for your own peace of mind and sanity for feeling like you’ve done everything you need to do this or you might regret it.

It sounds like it’s been an utter mess up and I’m so sorry.

Just don’t think you’re in any way responsible for not getting the stroke diagnosed, you did everything right, they were the ones that didn’t.

Hamandcrispsandwich Mon 18-Nov-19 12:27:51

I can't comment on the medical side of things, but we went through a similarly awful time earlier this year with my family.
Totally not the same situation, but it was also in a London hospital.
I wont elaborate on here, but feel free to PM me if you want.

I hope you get some answers soon. Wishing you all the best.

Mummyoflittledragon Mon 18-Nov-19 12:28:30

This is truly shocking. Sending you strength. flowers

EleanorLavish Mon 18-Nov-19 12:30:14

Very shocking to read this,OP. I'm very sorry.
I'm a nurse and a few things are jumping out at me.
Palliative Care Team-has he actually been referred and has someone from that team seen him? They usually come every day.
Agree re: special mattress, he really shouldn't have pressure sores!
Definitely contact PALS!
My very dear friend went through this with her DF. The care was abysmal. My friend wrote to the hospital and Palliative Care team, who had not been informed of her DF for 3 weeks, despite the referral supposedly being done. They first met him the day he passed away.
They encouraged her to write and complain. He fathers case is now used to improve the care of patients in the trust. Nurses and staff were disciplined. Like you my friend had no interest in compensation, she just didn't want anyone else to suffer as her DF did.
Wishing you the best of luck, he is lucky to have a loving family to support and fight for him.

Jaxhog Mon 18-Nov-19 12:32:49

I am truly, truly shocked by this. That it has happened in the UK and in London is only more shocking. I wish I could offer more than moral support.

To the MacMillan Nurse, what exactly could you have done or still do to help? My own experience is that MacM nurses only offer advice and moral support - they don't actually do anything. The OP needs some proper ACTION.

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