Is hospitalisation an option? (UK)

[SpinachHands]

Haven't been here in a while so some background info- I care for my partner with long COVID/ME who has been fully bedbound since December. Their condition has only worsened with an onset of severe autonomic dysfunction in February. They are only able to have liquid food, cannot sit up, can't look at their phone, listen to, or watch anything. They can only talk for a few minutes a day, and spend most of the day in pain and discomfort. The NHS and their GP have barely been able to help, and none of the medicine we've tried by going private has helped either. They are having some blood tests soon (which will be the first time they've had a doctor physically see them since last October), and have one more private medication to try. After that, if the tests show up nothing and the medicine doesn't help, we're out of options. The last thing both of us want is for them to go to hospital, but it's looking like our last resort.

What I don't know is if it's even possible. Without anything "life threatening" like malnourishment or severe cardiac issues, would they even meet requirements to be admitted? It would be the quickest way to access specialists and medicines, but I'm not sure what hospital department they would even be admitted to. I'm planning to ask their GP too, but wondered if anyone here has had experience with long term hospital stays, especially in the UK?

(And yes, we are both aware of the massive risk of mistreatment and abuse, but rest and time have done nothing, so without hospital our only other option is to accept that my partner will just continue to suffer and deteriorate in their bed. It's a last resort option that we hoped we'd never have to consider, but here we are.)

 

[DonPepe]

I’ve spent a year of my life in hospital and a nursing home. I was admitted to Oldchurch Hospital Essex, 35 years ago. I was under Neurologist Professor Findlay.

It was the worst thing I’ve ever done. A few weeks of graded excercise inevitably prompted a massive relapse. I walked into the ward and have hardly walked since, and here I am typing this message from my bed. It is where I spend most of my life.

Unless you think he’s got something other than cfs/me stear well clear. In my experience most sufferers deteriorate rapidly in hospital settings.

 

[Viala]

What do you expect hospital to do, do you want more lab tests? Then are you sure that the stuff will take care of your partner as good as you can do it? What chances are they will make them worse? They will take no responsibility for that and you have no guarantee that they will run any test that will bring helpful information.

If possible, find out what tests they would run first and check if you can do these tests without staying at a hospital for longer than a few hours. Ask them precise questions. If they don't know now what tests they will run, they will not know later and test randomly.

My opinion is it is all too risky, unless there is a clear indication that your partner has some atypical ME/CFS symptoms meaning it's possible that it is some other disease.

 

[SpinachHands]

My opinion is it is all too risky, unless there is a clear indication that your partner has some atypical ME/CFS symptoms meaning it's possible that it is some other disease.

To be honest I think so too. But my partner can't accept that there is nothing more that can help them, and our GP says they will have better access to medicines she might not be able to prescribe in hospital, from cardiologists or neurologists. The only alternative is to accept that they are this severe and may need potentially years more living like this to recover. And my partner says whatever life they'll have after beginning to recover, isn't worth even a few more months living like this. They're not suicidal, just doesn't have the strength to do this anymore. They can't sit on a waiting list for private specialist or NHS specialists anymore to wait for medicine that still may not help. Hospital could be the quickest way to access medicines that may start making a difference.

 

[sunshine44]

To be honest I think so too. But my partner can't accept that there is nothing more that can help them, and our GP says they will have better access to medicines she might not be able to prescribe in hospital, from cardiologists or neurologists. The only alternative is to accept that they are this severe and may need potentially years more living like this to recover. And my partner says whatever life they'll have after beginning to recover, isn't worth even a few more months living like this. They're not suicidal, just doesn't have the strength to do this anymore. They can't sit on a waiting list for private specialist or NHS specialists anymore to wait for medicine that still may not help. Hospital could be the quickest way to access medicines that may start making a difference.

It is such a tough call.
We feel, as human beings, that going to the hospital for these severe conditions is the right thing to do. And it should be. But, for many of us here, it’s quite otherwise.

That being said, if your partner really wants to go and possibly needs a feeding tube or other lifesaving devices, then, at some point it becomes necessary for some.

I wish there was an easy manual for this. I’m getting ready to have my family take me on a medical tarp and van to a hospital out of state next week for a variety of reasons. I’m taking huge chances, yet, I do need help with multiple situations now that I cannot tend to myself.

Im trying to trust.
Im sending so much love and strength to you. Two right now.

Tell him it’s always darkest right before the sun rises.

I remember a woman once wrote me after I was in the newspaper. She was lending support. She had been bedridden and mostly hand fed and in depends for 10 years. Ten years. Then a few things happened and she now can take care of herself although she is still homebound. Not bedbound. Never know.

 

[BrightCandle]

The only thing that can be done is rest and hope they recover some function. It can take years. The absolute last thing to do is to go to hospital, the exertion of that will definitely make them worse and there is a very high chance of significant abuse and harm and maybe death. Just please trust us when we say the best thing to do is avoid the healthcare workers and definitely don't put someone unable to leave on their own power in a place where they can constantly harm them. Before you know it a no capacity order is on them and you are accused and defending yourself in court over abuse or Munchausen proxy. They are just a danger to the both of you.

This is life now all you can do is adjust to it and lobby for more research funding and change to the healthcare system.

 

[Viala]

To be honest I think so too. But my partner can't accept that there is nothing more that can help them, and our GP says they will have better access to medicines she might not be able to prescribe in hospital, from cardiologists or neurologists. Hospital could be the quickest way to access medicines that may start making a difference.

There is always hope and some new thing that you can try. The approach of doing something as a last resort out of desperation is rarely good, same as decisions based on fear and lack of hope.

Doctors can operate within pharmaceutical realm only, there is no medicine that we know of that would really work and these drugs always come with side effects. It would be experimental because doctors also don't know how to treat it and in a hospital you would have no control over it most of the time. If something goes wrong, what you will do? Will you be able to protect your partner? Medical industry is about making money now, they will protect themselves first and their procedures. I agree with sunshine that hospital is an option only when it is absolutely necessary. This forum is full or threads about things that helped some people here and you can try them safely.

 

[Blazer95]

tldr brainfog sorry:

hospitalization is a health risk for every me/cfs patient and that should be always considered. reading about millie and knowing you are from UK i am severly and most honestly concerned.

 

[Marylib]

our GP says they will have better access to medicines she might not be able to prescribe in hospital, from cardiologists or neurologists

Does your GP mention which medicines those could be? This is a tough situation and I understand why the GP and the patient are looking for more help. But if (as most with ME) come out normal on cardio and neuro testing, then what? Maybe your GP can discuss what would happen. Also, can your GP pull your patient out of hospital if they get worse there - and before someone hears about GET?

 

[almost]

While I can understand the desire to do just about anything to improve, please understand the hospital not only offers possible help, but definitely risks. If your friend enters, and as @BrightCandle says, cannot leave under their own power, they are now at the mercy (which may not be kind) of others. Right now you and your friend have choice and control. It may seem limited but it exists. Enter the hospital and that is GONE if you cannot literally walk out.

Also, as others have mentioned, all that will be available is what is on the standard medical menu. You most likely lose control of any supplements, diet, sound and light levels, basically everything.

I understand it is bad now. It can get worse.

Please offer my/our support.

 

[SpinachHands]

She had been bedridden and mostly hand fed and in depends for 10 years. Ten years. Then a few things happened and she now can take care of herself although she is still homebound. Not bedbound. Never know.

The only thing that can be done is rest and hope they recover some function. It can take years.

Unfortunately this is what my partner fears, and they have said that they don't want to continue fighting if it's going to be years living like this, no matter what their life may look like on the other side.

definitely don't put someone unable to leave on their own power in a place where they can constantly harm them.

It would be experimental because doctors also don't know how to treat it and in a hospital you would have no control over it most of the time. If something goes wrong, what you will do? Will you be able to protect your partner?

Also, can your GP pull your patient out of hospital if they get worse there

Enter the hospital and that is GONE if you cannot literally walk out.

I'd be interested to understand more, when it comes to this situation, what my partner's and my rights are to leave the hospital or refuse treatments. My partner may not physically be able to leave, but could I not take them out of they wanted to leave? I know situations like Millie's are a risk where she was put on psychiatric hold, but is there any other way they could keep my partner there? We're not married and their only family is their sister and nan who have both been very supportive, so who would qualify as legal next of kin to make decisions if my partner became unable to communicate, or the doctors considered them to not have capacity? So far it's on all their records that I'm their carer and have been speaking to doctors on their behalf for nearly a year now. I always try my best to be their advocate for their wishes, no matter if I think differently. Even if we don't go to hospital by choice, it would be useful to know these things in case it comes to an emergency.

I also do appreciate and hear all your concerns. I am terrified of the prospect of taking them somewhere that could do more harm than good. But for my partner, honestly it may be this or losing their will to live. They're too unwell to act on feeling, but if they refuse to eat for example, then they may end up needing to be hospitalised anyway, and if it's for malnutrition there's an even bigger risk of psychiatric hold, or allegations of abuse against me.
I haven't spoken to anyone I know about this because nobody really gets it unless they've been there, where the only control and choice you have left is keep fighting or stop fighting. This isn't something therapy or antidepressants can do anything about. My partner needs hope that something might change, and the prospect of just lying and waiting for potentially years, doesn't give them hope. Maybe for some people that's enough, but my partner is too tired to wait anymore.

 

[Viala]

I think the most important fact here is that hospital staff same as most doctors do not understand what ME/CFS is, they often do not believe in it, never heard of it and even if your GP informs them about it, even if you have a proper diagnosis, they can easily discard it. It means that when facing any ME/CFS symptom they will probably assume it is something else, for example that your partner is faking it, so how can they help if they discard what it is. They can do that because usually no test will show any abnormality.

A hospital is an option if the staff is well informed about ME/CFS and has experience in caring for these patients. Otherwise chances are you'll get cought up in a medical machine of procedures.

I totally understand catching at straws situation, but it makes sense ONLY if you have some level of certainty that it will improve the situation and at least not make it worse.

Even if we don't go to hospital by choice, it would be useful to know these things in case it comes to an emergency.

Yes, please do find out all these details before making any decision.

But for my partner, honestly it may be this or losing their will to live. They're too unwell to act on feeling, but if they refuse to eat for example, then they may end up needing to be hospitalised anyway, and if it's for malnutrition there's an even bigger risk of psychiatric hold, or allegations of abuse against me.
I haven't spoken to anyone I know about this because nobody really gets it unless they've been there, where the only control and choice you have left is keep fighting or stop fighting. This isn't something therapy or antidepressants can do anything about. My partner needs hope that something might change, and the prospect of just lying and waiting for potentially years, doesn't give them hope. Maybe for some people that's enough, but my partner is too tired to wait anymore.

Hope is very important and your partner clearly needs it, but why to put all hope eggs in one basket?
There is so much more that you can do. There is a nutritional approach, for example have you tried vitamin B1 and magnesium? It helps some people with fibromyalgia and with CFS. Some get help with branched chained amino acids, others with potassium, vitamin D, magnesium. Some get improvements with dietary changes or even spices taken in higher amounts. Removing omega 6 oils from a diet is a good start as well to lessen inflammation. A range of supplements helps with mood, maybe your partner is deficient in some vitamins, minerals or aminoacids? Totally understandable considering how difficult this disease is. Start with small doses first. A shift in perspective will help a lot.

 

[Jadzhia]

Perhaps look at this thread posted just yesterday. Not easy to listen to what is happening to this poor girl. Her care was taken over, once she was in hospital, by the psychiatric department and that has worsened her condition and caused distress.

https://forums.phoenixrising.me/thr...naoums-father-pierre-speaks-to-the-bbc.92296/

 

[Tammy]

Whatever you decide, either way I would get an advanced directive in place. (that's what they're called in the U.S....not sure about UK?) Your partner makes note of his wishes on his healthcare and what he may or may not want. A person is also chosen to make decisions regarding his healthcare.



.

but if they refuse to eat for example, then they may end up needing to be hospitalised anyway, and if it's for malnutrition there's an even bigger risk of psychiatric hold, or allegations of abuse against me.

Even more the reason for your partners wishes to be written down on a legal document. I know this is a touchy subject, but if I got to the point I didn't want to eat anymore............no matter the reason, I sure don't want a feeding tube forced on me.

 

[Kes]

Hi @SpinachHands I'm really sorry to hear about your partner's truly horrendous situation.

May I ask what private specialists / treatments he has tried?

Does he have MCAS?

Can you say more about why treatments haven't worked? Is it he's not tolerating them?

Have you heard of Dr Abbi Lulsegged? He is now a private only endocrinologist with special interest in fatigue and unexplained conditions..based in London but does telephone consultations..30 minutes..25 then 5 minutes for dictation. There's not a long wait to get an appointment maybe two weeks typically and sometimes less if cancellations.

He has a reputation for being very astute. Some have given him the nickname Dr House after Hugh Lawrie TV character. I doubt he likes this as it creates impossibly high expectations. He's just a man. I'm currently consulting him but it's very early days. He takes a very holistic approach. I would say he's better than your average specialist but obviously there's no guarantee he will be able to help.

Has he tried Ivabradine for the autonomic dysfunction? Extra salt/ slow sodium tablets? Calf compression stockings?

Im sure the GP is well meaning but I have to agree with the other posters. I think it is extremely bad advice regarding the hospital. I realise it could become a necessity but failing that I think the chances of harm are sky high and the chances of getting the sort of help he's looking for is very low. I think the rationale for doing it simply isn't there. I think it's extremely wishful thinking. Better to search more for private options to try things at home.

One final point regarding Dr Lulsegged. If he can find a co-morbidity/ ties then that could open up new treatment possibilities.

Sorry for the long message.

Best wishes to you both

 

[Kes]

P.S. I forgot to say, has he tried any caffeine during this time? I'm not sure it's a good idea in his particular situation. I realise he can't be upright but if there was a very strong rationale for him to do so for example to try to get help and they couldn't come to him it may be possible that caffeine may provide some temporary relief to the symptoms. There is scientific reasons behind it but I can't currently recall it but I'm sure you find out more by googling. I have p.o.t.s. like symptoms but nowhere near as bad as your partner but I accidentally found out caffeine helped me. I only have it very rarely as I am very sensitive to it and then I get wired and it takes me a good while to recover but if I really need to go somewhere that's basically beyond my normal limits it allows me to do it.

 

[Kes]

P.P.S. Sorry, one more thing. Has your partner had a 24 hour urine test? Could be useful to see his sodium levels etc

 

[SpinachHands]

I should also mention- the treatment we're looking for isn't for their ME/CFS but their dysautonomia. After 7 months being fully bedbound, my partner has noticed that underneath the dysautonomia, in small moment where it eases up, that their ME has actually been improving. They've said sometimes it feels like without the autonomic dysfunction they could probably get up out of bed. But most of their day is either in severe parasympathetic or sympathetic overload. The GP tried Mirtazapine which just raised their heart rate and adrenaline massively, and it took several weeks after stopping it to recover. I'd booked a private long COVID specialist, Dr Claire Taylor, back in January and had the appt in June- she also has a lot of experience with POTS, MCAS, etc, and said it's likely my partner has one or both just from their symptoms history. She prescribed 3 meds, and the next available follow up appointment I could get with her is in December. The fludrocortisone we had to stop after four days because it was causing intense full body pain. The ketotifen just flares up the dysautonomia whenever they take a dose, just over 3 weeks on it with no noticeable benefit yet. They just started famotidine today and it's massively flared up their dysautonomia, more so even than the ketotifen. She's also going to send some blood test recommendations to their GP to check cortisol levels, etc, but her letter still hasn't come through yet. Basically where we're at is if these medicines don't show any signs of helping, and the blood tests show up nothing, that's it until December.

 

[SpinachHands]

Whatever you decide, either way I would get an advanced directive in place. (that's what they're called in the U.S....not sure about UK?) Your partner makes note of his wishes on his healthcare and what he may or may not want. A person is also chosen to make decisions regarding his healthcare.

This is a great idea! I'll look into if there's a UK equivalent

 

[SpinachHands]

There is a nutritional approach, for example have you tried vitamin B1 and magnesium?

They take about 15 different vitamins and supplements at this point and have tried many more. None seem to make more than the tiniest difference unfortunately