NICE guidelines for hospital admissions

Hi. Sorry I’m not well enough atm to go back and read the other threads in the NICE forum that I’ve participated in - I remember writing related to this but don’t remember if I’ve mentioned this specifically.

will there be something in the NICE guidelines about hospital admissions for those with ME? Especially with severe ME?

As far as I know so far There’s only something about .. patients with severe ME may need to be admitted to have investigations done (as will get too tired travelling).

But going through a hospital admissions process for me for surgery at an NHS hospital has been hell. I just think there needs to be something firm in there. And not rely on a hospital passport (which I’ve heard is coming) but from what I can see the NHS is so busy & quite frankly they either have no time for complex patients or don’t want to have time for complex patients, and they can cause so much harm.

- About having their own side room being crucial and why. (Light sensitivity noise sensitivity movement sensitivity contributing to physical deterioration)
- Needing to be allowed to have their own familiar carers
- Light Sensitivity & how it can be far more severe than in other conditions even (Severe/very severe ME)
- Noise sensitivity, again as above
- Movement can trigger deterioration, so not to move people unnecessarily
- Not too many people in the room at once if they can help it
- To be careful to space out appts If patients can’t travel

As an example my surgeon, understanding my light and noise sensitivity, said at first he would give me my own room. Then he said he wanted to put me on a HDU ward. Then it turns out there is no HDU ward. Now they’re saying they won’t put me in own room and will be on a ward as they don’t have many beds. Right now if I even listen to 10 mins of loud ish music I deteriorate & become unable to eat. Can you imagine me on a ward after a surgery? What will happen to me?

then they’ve told me I need to travel in 3 times (45 mins each way), a 1.5 hour journey, 3 times in one week, just before my surgery. I would deteriorate so badly. So basically because of all these reasons I can’t do it now.

I’m terrified at the thought of what’s happening to others like me or even worse than me. I feel like if there’s something specifically under a headline of hospital admissions, then we as patients, can point to that to say: look! This is what we need. Otherwise we can end up in awful situations like this. Patients shouldn’t have to be terrified of going into hospital or even not go in, placing their health and lives in danger even at times, because of how they’ll be dealt with.

 

I've just been through all that – five times in with recurring sepsis and liver abscess. The doctors knew nothing about ME, apart from it meant patients were a bit tired, so ignored it, despite all my efforts. Yes, it has really knocked me back, and I'm only moderately affected.

If you can get your specialist to see Natalie Boulton's videos – if necessary just the ones on PEM and on hospital treatment, that might help. I only managed to persuade one junior doctor to look at them, and I must have seen 30+ doctors. One specialist suggested he could book me a session with a therapist for graded exercise. He soon learnt his mistake!

However, a local friend did get her GP on her side, then worked with the specialist to arrange things more sensitively, and that helped a lot. Same hospital, different consultant.

But it's why, at the moment, I'm working on projects to do with educating doctors.

 

I'm sorry u are going through this @lunarainbows

I was supposed to be having an operation about 18 months ago. It has been postponed indefinitely. I wasn't able to even get to the outpatient appt to discuss the surgery etc let alone after that I was hoping to talk to the anaestheologist ,which I requested as I had concerns . and then I would have had to try to sort about not being on the main ward , amongst many other things.
It was so difficult with so many hurdles.

 

So sorry @Graham and @Alis
I do remember both of your respective threads about hospital. It’s really not right.
Thank you for working on this @Graham

 

dealing with hospital in 2017 i explained i had m e to the main person in gastro enterology told her that travelling was very difficult for me proceed to have four appointments in 6 days one of which was totally unnecessary tipped me into severe m e needless to say have not been back and have not seen a doctor since . what is the point when they do not listen to you or choose to ignore what your telling them their policies seem to be far more important than patient welfare .

 

Awful. See this is the thing they cannot even fathom what difficulty travelling means to us. It doesn’t even enter their minds and they don’t take the time to learn or listen properly. That it actually causes physical deterioration, so spread it out or reduce the appts. So many appts can actually be done over the phone as well.

 

The new draft for consultation will be published on 11 November. I hope you can wait until then, and that it offers some support when it comes.

 

This is such an important aspect that needs addressing, without it moderate or severe PWME are not going to be able to access hospital care when they need it.

I recently had a hospital admission due to a kidney infection. It was complete hell, I had to discharge myself after 36 hours as an inpatient, which included having 2 ward changes in less than 24 hours (3 different wards altogether). Each ward was sensorily worse than before, I ended up in a small 'temporary' ward, next to a vibrating bed, which sounded like a pneumatic drill to me. I already hadn't slept for a couple of days before the ambulance was called, and only had a few 'microsleeps' (something the body does when sleep deprived) but no actual rest or relief for the entire time I was in the wards. They were worried that the infection could spread or turn to sepsis without continued IV treatment, but I just had to take my chances with oral antibiotics. I made it very clear that I was taking this action to preserve my health, that if they could offer me a bed that met my sensory needs I would stay for further treatment. Funnily enough, that's not what they wrote on the discharge papers...

I made the right decision. I suspect there was some antibiotic resistance involved. They sent me home with just oral Amoxicillin, which they had been giving me by IV. After 48 hours my daughter phoned the GP as it was clear they were not working and I was prescribed some different antibiotics. They were nasty but effective and I started to improve within the next 48 hours.

After my recent experience they only way they will be getting me back into an NHS hospital is if I am unconscious.

At some point I will write up the full experience, obviously there was a whole lot of bad experiences not even just the sensory overload. I will be making a formal complaint to the CCG.

 

Although this is about the experiences and subsequent death of an autistic young man in an NHS hospital, I think it is very pertinent to PWME, especially those with severe M.E. The story is horrific, so I am putting in a trigger warning. The sensory problems of autism should be well known since we have a specific piece of legislation for autism in England, the Autism Act (2009), yet not a single nurse understood them during my recent stay in hospital (I have an ASD diagnosis as well as severe M.E.). That doesn't give me much confidence that the sensory and other issues that prevents people with moderate-severe M.E. accessing healthcare are going to be taken seriously. Certainly Oliver's 'hospital autism passport' did not save him from being given anti-psychotic medication that had previously been showed to be harmful to him and for which the contra-indications were well documented in his passport.

https://www.olivermcgowan.org/

https://assets.publishing.service.g...tachment_data/file/422338/autism-guidance.pdf