Left to become malnurished in hospital as doctor bullies vulnerable disabled adult

[Lola0401]

Am i being unreasonable to expect to not be bullied and intimidated whilst in hospital care by their staff? My body getting weaker as days go on through lack of nutition?
I am a disabled, vulnerable adult with complex needs. I have been bedbound for 12 months and have 24/7 care.
I am due to have my left leg amputated in 3 weeks time.
I have had no nutrition for 15 days now, and am on IV fluids on and off, due to worsening underlying conditions. I have battled this for over 3 years with varying ways of keeping me nourished when these episodes (lasting weeks on end) happen including feeding tubes.
I have been in hospital for 1 week now and with no evidence (as the dr stated) the drs are happy to dischatged me without any fluids or nutritients that my body desperately needs.
As a teenager i had an eating disorder. Today when i told the dr i have lost a stone in weight since last week he responded "to be honest you look like you could do with loosing a bit anyway." Upon hearing this i got very upset and requested he leaves (i just wanted to run away but being bedbound i cant). He stood at the bottom of my bed, arms folded, glaring silently at me, refusing to move for over 10 minutes despite many further requests from both me and my mum.
My mum stood up and requested he leaves, he continued to stand glaring at me. I felt very vulnerable and intimidated and was getting more and more distressed.
I have spent 12 years in and out of different hospitals. Different treatments and surgeries. We could write a book about my healtg and hospital stays but this incident really does bring it home to me how vulnerable and defenseless I am in a place where i should feel the most safe.

I'm really sorry that you're feeling so low OP. I also don't fully understand why you need a feeding tube rather than being able to eat, but accept that this is because I don't know enough about your condition.

I do know that it is very unusual to give a feeding tube to anyone who is physically able to consume nutrients (in whatever form) though. (I have worked in healthcare settings for several years.)

I sincerely hope that, one way or another, some progress is made for you tomorrow. This all sounds like a truly crappy situation to be in .

panda.Seems like the first 2 articles are about the same person who seem to have a lot in common with OP.
However,the first article mentions nothing about EDS which is rather odd,but both are suggesting 'crowd funding' to finance the private amputation'

Has the thread title deliberately been made to look like a newspaper headline in the hopes that the DM would pick it up? Along with the talk about how the NHS have simply refused to fund a necessary amputation and they routinely refuse to fund cancer treatments as well?

I'm sorry that the OP is in a bad place, but some of the statements made on this thread by the OP and her friend are simply not true, and are highly emotive and deliberately worded for dramatic effect.

I suspect that there are some severe MH issues at play here, and that nobody is in a position to make any kind of objective judgement on the OP's alleged situation. Certainly I don't think it's helpful to try to whip up anger towards the NHS. The NHS certainly do have their failings as do all organisations, but we do not routinely starve patients in this country and neither do we routinely withhold life saving treatment.

As other PP's have said, this is far to complex to be addressed here. I am exceptionally surprised that you are not having any nutrition, especially as you are due for surgery in three weeks. If any form of oral nutrition cannot be tolerated, then intravenous nutrition can be given.

I suspect there is a lot more to this than meets the eye.

Op, can you confirm that is you in the link?

Glad to see the op has received so much sensible advice. Unfortunately I'm sure she won't take it and will continue to pursue medical treatment she doesn't need. Very depressing.

Incidentally op - how do you know you've lost a stone?

well Blue

It is hard to give advice with only vague information. You can ask for a second opinion from another Dr, you can take your complaint further, e.g. to the ombudsman if you have complained to PALS and they have said "no case to answer" after an investigation.

I would be interested to hear what OPs Dr's have to say (obviously I know this is not going to happen). It would seem highly unusual for fluids to be with-held from a clinically dehydrated patient who is unable to take fluids orally. Have they explained there reasoning? It would be even more unusual for a complain investigation to uphold the with-holding of fluids from a dehydrated patient who was unable to take oral hydration/nutrition. I also note you have said you have had some IV fluids, so not entirely accurate to claim you have had nothing...

Ultimately, I would point out that patients can request a particular treatment (e.g. having IV fluids or NG feeding) but such treatments cannot be demanded, as they are based on clinical need. Of course, the clinician would then have to defend their decision if a complaint was made/investigation launched or if there was an adverse outcome.

Wannabe, just to make it clear that this is Lola's first ever post on here, so maybe that is why the thread title maybe does not conform to the Mumsnet 'norms', she did not post it to end up in a debate about NHS funding, and in her original post only mentioned her upcoming amputation in passing. It was only when other posters asked her why she was having an amputation in the first place, that it was then discussed. I have mentioned several times that the decision by the NHS has been accepted by the family, and funding has been raised by other means, so it is no longer an issue.

Again it has been other posters Googling various possibilities as to who the OP may be, and suggesting them / posting links on here. She has not offered this info herself, and it is just speculation from another poster. She is not looking for publicity, just advice!!

I only pointed out that from time to time the NHS do refuse to fund expensive treatment, and I used cancer as an example, as I know someone who has been in this situation, where potentially life prolonging treatment was deemed too expensive and refused, and a lesser effective alternative given as the patient was terminally ill anyway. I did not state that the NHS routinely refuse treatment for cancer patients, and I do not believe that, though it is true that some treatments are only available in certain areas of the country, and not in others. We are not trying to whip up anger against the NHS, or be dramatic, but the way the OP has been treat by some of the HCPs she has had contact with, is shocking. Others have been kind and understanding. if Wannabe would also like to clarify the points that I have made that are simply untrue, I would be happy to try and explain myself better.

bluepenguinfeet you have volunteered so much information about the OP that she is now very easily identifiable in real life.

I'm not sure whether or not this was your and/or OP's intention but I have reported this thread to MNHQ.

There was a lady on Davina McCall's This Time Next Year a few weeks ago. She suffered from a neurological condition which left her in continual pain and with a leg which was swollen and useless. Amputating the leg meant she was able to become more active.
www.itv.com/presscentre/ep4week47/time-next-year

I don't know if the OP's condition is similar - but there are some terrible conditions that people have to live with.

is there smoeone of strength that can speak up for her.go to main reception and ask to speak to someone in charge over the care given on a certain ward.they will not want the main hospital hearing this from you and take you to relevant person.sometimes other might not be aware of certain aspects of certain wards.
that saying you mention mental illness.ed?does this mean you actually quit want the reliance to be back on ng so you don't have to eat.is there ed still there at play.
is there any mental health charties there.social services.the emotional state of you is just as important and right now they could be kinder and then helpful of the next step.
speak to ward manager.
go to your gp,phone them,email ge tthem to step in,come in,help.
phone 999 tell ambulance service they will step in.
don't let yourself just give in.if this is the shocking truth of the situ then fight.
could you order the supliment drinks.fortisip,ensure
take care.big hugs.

I can't believe people donated money for her to have her foot amputated.

I am sorry you are suffering OP. However, like others I believe that of course there is so much more to this and despite the claims that this thread wasn't started to get more media attention or whatever it doesn't add up. What advice could we possibly give you without knowing your medical condition? Very few people will believe that doctors are leaving you malnourished because they don't care about you because it doesn't happen. Their carer would be over if they did.

Very few people will believe that doctors are leaving you malnourished because they don't care about you because it doesn't happen.

I agree. Unfortunately, this (along with the doctor standing there for 10 solid minutes, and you losing a stone in a week) makes you seem an unreliable narrator.

I'm not saying you are lying, but that there seems to be mental health issues at play. That's not meant to be derogatory in any way, just a statement of fact.

Can you possibly provide any more information about PALS' response to your complaint? Or any more information in general? People might then be able to help you more.

I'm sorry you're suffering. And I don't see how we can help apart from offer sympathy. The only other avenue I can think to explore is someone with political influence such as your local MP. I have ME and chronic pain...... my whole body from the top of my head to my toes so I know what really bad pain feels like.

What is causing the nausea? Is it the drugs or something else? Do the doctors think you're faking it?

Maras2 :I am not suggesting she should have her leg amputated, The additional post by another friend of the OP seems to clarify that she has chronic pain in the leg which the nhs are not convinced will be solved by amputation hence she is having it done privately. As I said in one of my earlier posts severe ME causes so many unexplained symptoms, one of which is definitely an abnormal pain response. I would hate to think a young women in her 20s had an amputation for it not to solve the issue. My sister whom I mentioned earlier had spinal surgery privately when disabled by ME , now recovered from the ME she regrets the surgery (which like lot's of spinal surgery for severe back pain did not alter anything) and on reflection she now recognizes it as a ME symptom.

dotty

I was also thinking that about the chronic pain too and the potential ME. Mine is a symptom BUT also physical as there are issues with my muscles being very very tight. The question is, is this bone pain, muscular or ligaments? If there is no bone abnormality, no way would I get an amputation. Anyway, I'd have to amputate my entire body. I believe that's called suicide......

Please don't phone 999 for an ambulance when you're already in a hospital

If you are genuinely having fluids and nutrition with-held, then you should ask to speak to the senior matron and consultant. Ask for a dietician and speech and language referral for assessment.

Mumsnet really isn't an appropriate choice for this thread. I suspect this isn't the whole truth of this story either.
How did you know you lost a stone within a week if you are bed bound? And a dr stood staring at you, not saying anything for 10 whole minutes whilst you and your mother are telling him to leave? Bullshit.
You're taking morphine and probably a variety of other medication and what are their side effects? You guessed it, nausea! You've said no where in your posts that eating makes you physically sick, just nauseous. Cut down on the morphine and i bet the feeling sick goes. Feeling sick also does not stop you eating.
If you were to be artifically fed through a peg/jeg feed (unrealistic if you say it's making you feel that sick) or tpn, you'd be reliant on it for months because you'd never break the habit of eating again!!
The NHS won't fund the operation because they can't be sure it will enhance your quality of life. If they did the operation and nothing changed, I'd bet there would be a thread along the lines of 'the nasty nhs cut my foot off for no reason'.
Also this post is extremely outing, have reported to MNHQ.

If you were to be discharged home then what would you eat and drink there? Maybe your mum could bring it in for you. Since an NG tube will go directly to your stomach it wouldn't be much different to eating food the normal way. I suspect that the doctors are unwilling to give you a NG tube because you are capable of eating, and there are risks involved with any intervention.

....also TPN (liquid nutrition) is very expensive and would. It be given to someone who can sit up talk and swallow.

Sounds like a lot of underlying mental health issues here in addition to ME.

< wouldn't > not WOULD IT.

Again it has been other posters Googling various possibilities as to who the OP may be, and suggesting them / posting links on here. She has not offered this info herself, and it is just speculation from another poster. She is not looking for publicity, just advice!!

I posted those links because I'd remembered the EDS connection - it's a pretty rare illness. The OP must have known she was given that away when she posted this post, particularly the fact that google links up straight to her crowdfunding page.... You then posted the bit about neonate nursing - another direct google link .

I've had bouts of CVS which lands me with vomiting up to 200 times a day at times, and usually lasts for weeks at a time. It always results in a hospitalisation and I have never once demanded to be NG tube fed.

I always receive fluids via IV consistently, plus potassium and Vitamin injections - there is no way a doctor would not do that when someone is dehydrated (severe dehydration with very low blood pressure and extremely fast heart beat is what usually happens by Day 2). I get anti sickness medication (x3 types) and I have to force myself to eat - I cannot tell you the number of nurses, doctors, paramedics and health care assistants I have vomitted on in the past. But you know, I know if it happened again tomorrow those same medical staff would be there sitting next to me rubbing my back whilst I spewed for what felt like the millionth time that day.

It frustrates me that you've identified the NHS trust that these doctors are working at from your posts and you are now slagging them off on here as though they are leaving the OP to die.

Perfect storm for a Daily Mail doctor-hating story or what? Sorry, but I think this post is for one purpose only and that's publicity. A quick google tells you exactly how to make higher-level complaints about staff within the NHS.

No amount of taking to social media platforms will have the result you want. There are clearly mh issues at play here and it is not in any way surprising that a doctor is refusing to tube or iv feed a patient with a history of eating disorders who is capable of eating. I suspect they're not withholding nutrition and hydration but that you're refusing to take it. If you were seriously dehydrated and had been denied food for 15 days more than one person would be in professional shit up to their eyeballs. I have no doubt that your perception of your treatment is real to you (and your friend/sock puppet) but I suspect access to the whole picture would tell a very different story. Mumsnet is not the place for you to get help. If it's the Mail you're after just phone or tweet them directly.