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.

It sounds like there is a lot going on and I'm sorry I don't have any specific advice but I wish you well. I wonder if you would benefit from having a (non family member) as an advocate for you.

Being fed by tube carries massive risks. If you're physically able to eat, you should follow medical advice. I don't blame the doctor for not wanting to tube a patient who's capable of eating... this situation sounds complex.

Can I just say first of all that I know the OP personally, but am not a relative. A debilitating medical condition left her completely bedridden and in desperate need of an amputation, which for whatever reason the NHS have decided not to fund, even though without it she cannot leave the house unless it is by ambulance and she needs 24 hour care. Prior to this she was a student neonatal nurse with a bright future ahead of her, but she had to give up her course due to her condition.

Her family have saved and fundraised over the past year to cover the cost of the operation as they did not have the money to pay the cost of having it done privately, and in the meantime she has been completely bed bound at home, apart from various hospital stays, when required. It has taken some time but they now have saved enough money and have arranged for the operation to go ahead, hopefully in the next few weeks, but unfortunately her health is now failing in other areas. Some of this is because of the prolonged time she has spent bed bound (12 months).

Hopefully after the operation, and with a lengthy recuperation and the right support, she will be able to gain back some independence and quality of life. At the moment she is not getting the support from the NHS that she needs, in terms of hospital care, if they are willing to send her home without ensuring that she can receive any kind of fluids one way or another, they are failing her as a patient. If she continues to be dehydrated and is deemed unfit to withstand the surgery, then her operation will most likely be cancelled / rescheduled, meaning that the cycle of being bedbound-dehydrated-in hospital will continue. You would think in these circumstances, that it is in the NHS's interests to ensure that she is as well as she can be now, ready for her operation, so that in the long term she is less reliant on the NHS? All she wants is to be able to manage her pain more effectively and not be relying on 24 hr care. Obviously it is understood that it will be a long road to recovery, not a quick fix.

The other point to make is that she is relatively young (mid 20s) and I don't know if this may be the reason why the doctor was unnecessarily rude to her, but the remarks about her weight were uncalled for, and PALS do not seem to be assisting either.

To the poster who commented that she has time to post on here whilst in hospital - being online has been her only form of communication with the outside world for the past year, other than immediate family, doctors and hospital staff, and an occasional visit from her best friend (though this is rare as she is more often than not too ill). Hopefully there is someone reading who can offer her some helpful advice

You need to eat actual food, if your problem is psychological then you don't need feeding through an IV . It sounds like nobody is withholding anything g you are just refusing nutrients.

AndKnow Of course, because if it's psychological she just needs to pull herself together and get over it, right?

Mirime no not all, but if the op wants to be well enough fir the op she needs nutrients.

Why does her leg need amputating and why does it need to be done privately?
Sorry,OP,to talk about you but your friend seems to be speaking for you.

I agree with those who have stated this situation will be more complex than can be outlined here. Nobody can judge what the doctor should or shouldn't be doing. I do hope you feel better soon though

I usually try to avoid commenting too much on threads like this but if I understand correctly you are about to have an amputation that the nhs don't consider necessary and are in your early 20s. I know I am sticking my neck out here but having had a sister (a qualified nurse) rendered bed bound for 4 years with severe ME and professional experience of severe ME patients please explore this as a possibility. The NHS has very poor understanding of this, most Drs believe it to be a mental health problem and do not accept how disabled people become. My sister recovered after 4 years with treatment by a Dr who the GMC were always trying to get struck off as they do not accept her methods. It is such a complex illness, personally I believe it to be a syndrome which affects the immune response, I also think that certain personality types are more at risk such as high achievers/ perfectionists. Psychological distress follows. Please make yourself aware of how physically disabled ME can make you before make life changing decisions.

Too much unknown here to make any useful suggestions, and OP and her friend obviously know who to contact for help. I am a little concerned and puzzled as to what surgeon would perform an amputation privately, when an NHS surgeon apparently deems it unnecessary.

A doctor glared at you for ten minutes? Without saying anything?

There's just no way I can believe that of pretty much any human, let alone with knowing how little time doctors have on rounds...

Interesting and wise advice from dottycat122

Bluepenguinfeet if you know the OP personally then surely you are in a better position to offer her advice on what is obviously a very complex and long-running medical issue which the OP says herself she has only summarised briefly, rather than a bunch of strangers on the internet?

I agree that blue you are in a good position to offer advice and support. It is impossible to give anything other than kind words and empathy as we do not know the full situation. Of course, it's totally up to Lola what she wants to share and she sounds like she's not feeling up to explaining in detail. With that in mind, perhaps you could be her advocate.

Possum
"Ondansetron is good but pricey so they're reluctant to prescribe it sometimes"

Nausea and vomiting is quite complex and the best treatment can depend on the cause- because the neurotransmitters and so on involved are dependent upon the trigger. Ondansetron is very good for SOME causes of N&V (most typically that related to chemotherapy or post-operative). It is not good for all causes. And yes, it is expensive and so really only should be used appropriately.

Sorry- slight hijack of the thread. Just think it is important to clarify.

As to OPs post, if you have made a complaint and are not satisfied, you're next option is to take it to the ombudsman.

Think I know who the OP is.

The NHS won't amputate because it may not solve the pain, which is the reason the OP wants the amputation...

OP, you need to eat the food you are being offered - it is not that nutrients are being withheld from you, it is that you are not eating. You may need to work out the best times to eat from taking the anti-sickness medication and play with your dosage a bit. You can't expect to be fed by an NG tube when it's not medically needed.

dotty Sorry to sound obtuse but why would leg amputation help someone with CFS?

www.thesun.co.uk/news/1850794/desperate-gymnast-begs-for-donations-for-10000-amputation-after-nhs-refuses-to-end-leg-agony/

www.hulldailymail.co.uk/rare-ehlers-danlos-syndrome-sufferer-jess/story-27992441-detail/story.html

Very similar story here.

www.mirror.co.uk/news/uk-news/hope-gordon-21-cuts-leg-8578261

stv.tv/news/features/1376503-young-swimmer-who-funded-her-own-leg-amputation-has-no-regrets/

Another similar story of someone who was refused NHS amputation

OP, other than advice re taking your complaint to the next level- i.e. NHS ombudsman, it is hard to comment on what you should do.

Perhaps you need to find out what the thinking is behind not passing an NG? There is often a very good reason for not doing this. It sounds like your case is very complex and there has been a communication break down between you and your NHS medical team. Maybe you would benefit from a second opinion? But that would involve having to accept that perhaps you're Dr's are correct...

If this only happened today and you only spoke to PALS today, it can take some time for them to investigate and attempt to resolve the issue. Having worked in clinical governance, if a complaint was made under the hospital complaints procedure, a proper investigation was undertaken, which usually took at least a couple of weeks to conclude.

I have not been in a similar situation having only been in hospital once or twice myself, so not much experience. I can listen and offer sympathy and support, but not much else. I was hoping that there would be someone on here who can offer her sound advice, who perhaps has dealt with the situation of repeatedly not being listened to by hospital staff and addressed rudely, or of being chronically ill but in a position where the NHS has pretty much written them off. I am a regular NM reader (though do not post very often) and think that advice given on here is usually honest and for the most part good, which is why I recommended it. Surely unfortunateevents, that the whole point of NM is to ask a bunch of random strangers on the internet for advice, in the hope that someone can give you a fair and honest opinion of your situation?

Regarding the amputation, it is not my place to go into details of why this needs to be done Maras. ( it's not M.E. Dottycat, a completely different condition, and she has explored every other possibility first, the amputation is the last resort. Sorry to hear how unwell your sister was, and I am glad that she made a recovery).

The NHS have not denied that it needs doing, but as always it's a postcode lottery and they have decided not to fund the operation. This happens in other areas of the NHS too, such as cancer patients denied certain treatments (and offered a cheaper alternative) because the NHS has decided not to fund a particular drug in a certain area, even if it is available on the NHS elsewhere in the country, even if it is proven that it would be beneficial to the patient. She didn't come on here to complain about lack of funding, her family have accepted that decision from the NHS, and have raised the funds themselves.The private surgeon has agreed to do it because she has a clear case that it will be enormously beneficial to have it done. Just really wanted some advice from others who have been in the same boat regarding a breakdown of communication with hospital staff!

"they are willing to send her home without ensuring that she can receive any kind of fluids one way or another"

I'm really sorry she / you, OP, are clearly suffering - but I can't understand why you're unable to take in fluids in hospital or at home. Obviously understand if you don't want to post medical information on here but it's hard to give advice when the situation is so unclear.

You could ask the Patients' Association for help if you feel you aren't being taken seriously in the hospital.
www.patients-association.org.uk/