Why can't hospital outpatient clinics cope with patients who can't sit for long in the waiting room? Or can they?

Like many PwME, I struggle in outpatient clinics because my OI means that I can only sit upright for about an hour before I need to lie down. Considering I've got about a 40-minute round-trip to the hospital in a taxi, that's essentially 20 minutes of safe sitting time in the hospital.

There's always a couch to lie on in the clinician's room, but the problem is the time spent having to sit in the waiting room, so I always ask, before any appointment, whether there's a couch where I can lie down to wait. Sometimes there definitely is, sometimes there definitely isn't, and sometimes there might or might not be, depending.

This isn't good enough. I've spent hours lying on waiting room floors, or been unable to attend at all at clinics where you have to be there with an all-day appointment.

This is just weird. These are hospitals! They're meant for sick people! So why don't they even have couches available for the sickest to lie down on while waiting? What happens to similarly disabled patients who don't have ME, such as the bedbound elderly?

What can we do to change the situation?

 

I wish I knew. I’ve asked myself the same question many times, tried many things but failed. Sorry to not be more positive.

When I was initially ill and in and out of hospital for appointments I tried to explain, asked for accommodations, but never managed to get any. Some of me was ‘well this is what you have to do, this is how the system works, jump through the hoops’ so I pushed on. Biggest mistake ever obviously.

Hospitals are setup for the convenience of those that work there not for patients. I’m not saying they’re great for people that work there either mind! There are wider problems. But anyone who has spoken to a consultant’s secretary or read just about any hospital letter knows who is seen as the most important in this setup.

I’ve tried asking at all levels I can, I’ve tried being sympathetic to the staff’s problems, I’ve tried outlining what I need, I’ve tried angry, I’ve tried involving my MP. I even got a multidisciplinary team meeting involving lots of people in my local NHS about me and the wider issues for people with ME. There are times I’ve had hope but nothing has ever changed. I try from time to time but have mostly given up and realised I cannot do it and my energy is better spent elsewhere. It’s not like I’m up to getting to a hospital anyway.

This won’t change until the institutions accepts there is a problem and their incentives are to not do this.

 

A 'traditional' model of disability has people needing a wheelchair, and those who are really ill needing a bed right away. I think we with dynamic disabilities and energy-limiting conditions once again fall between the cracks. There are innumerable ways in which healthcare settings could be bettered for us, and for others.

 

@Jonathan Edwards I'd be very interested in your views on this!

 

I sit in a hospital chair and use my wheelchair to elevate my legs so that I am as close to lying as I can. It attracts attention if nothing else and I use it regularly and can usually manage with that.

There have been 3 occasions when that wasn't enough and I felt too ill to stay. One was recently when my appointment was at 2 pm and at 4 nobody from that clinic had been in. Mr B went to tell the nurse he was taking me home- I was taken in on the spot. Another was during the night in A and E- can't remember why I was there- and a bed was found in an unoccupied room but I think I was forgotten about. The third was in an eye clinic and they denied having access to any beds. I had to manage. I was really frightened at the symptoms and was considering lying on the floor when my turn came. The problem is that I know I will have to come back so going home isn't really an option.

It's always a worry.

 

Very sorry to hear about other people's bad experiences and lack of access to care.

The big question remains: how are hospitals dealing with other patients who don't have ME but aren't capable of sitting for long? And what do we have to do to get dealt with in the same way? There must be thousands, and many appointments involve equipment that can't be taken out of the clinic, so the patient has to come in or go untreated.

 

Thanks @Sasha and for your looking for solutions. Certainly older people are dealt with differently I feel. I was in my 30s and looked like a fit healthy man. You don’t get much help until you collapse or just lie on the floor. Then people take notice but more in a ‘someone else should help him’ way I found. Compared to how my elderly grandmother was managed to and from appointments it was a world away. Although there were problems there too so…

I think a solution has to include education and acceptance combined with flexibility. These are difficult in any organisation without acknowledgement of the problem and a big push with support from all levels.

 

Or even then, in my experience.

Unbelievably, the clinic is very rarely willing to move me up the list to be seen next, even when I'm on the floor because I'm too ill to remain sitting.

 

I believe that hospitals don’t have the space for lying down somewhere - the modern ones are being built with not enough beds, wards or waiting room chairs. So that’s probably the biggest hurdle.

The second is how “weird” dynamic disability is. I”ve been thinking I’d love to go to the theatre but lying down. I haven’t found any which can accommodate it yet. I think it’s a combination of Health and Safety (what if there’s a fire? Erm I would stand up!) and it making the place look untidy, people will think you’ve collapsed, or they will all want to lie down if the see you “getting away with it”

interesting that this thread came up, as I was looking at the stickman cards the other day and thinking of getting some

https://stickmancommunications.co.u...tent=1&categories=1&attributes=1&tags=1&sku=1

If there’s a company creating cards saying “I need to lie down” surely there’s some demand.

 

You may be right, but isn't like them saying, 'We don't have space for sick people'? It's just crazy.

 

Unfortunately they are also saying that.

 

When I was having chemo I was told that there was no where I could lie down. The chemo ward consisted of reclining chairs but I was too weak to recline one and they only reclined a little.
The ward was full of families as people were encouraged to bring companions. There were not enough visitors chairs and no privacy (as in curtains). It was loud and crowded.
I was approached at each chemo session by visitors hoping to take the visitors chair next to me (which I had my bag, book, water on).
Eventually, just as I was finishing my 2nd course I saw an elderly lady being stretchered onto a side room. There was a bed with curtains, chairs etc on there.
After complaining to half a dozen different people and a big fight I was given the bed for the end of my chemo.
I think it makes a difference if one gets patient transport on a stretcher. I am not able to get this as I have a working partner.
During my chemo I needed to stop and start and to change my regime as I could not physically get there. There was no chemo of my type at home and they refused to stretcher me there. I was expected to arrange a private ambulance with staff to stretcher me if I wanted to have chemo as arranged.

 

That's awful, @ukxmrv - I'm so sorry that happened. Again, just unbelievable.

 

Hospital waiting rooms all across Canada are generally overwhelmed. They are largely "shut up and wait your turn". I have a type 4 reaction to bee stings. No anaphylaxis but gradual swelling for days. Got a sting on my face which seemed to be of more concern. Even though there is potential for anaphylaxis I sat in chairs for hours waiting to be seen. The nurses 10 feet away at the front desk never came to check my throat or offer any oral antihistamines.

The specialist I've seen for 15 years, who professes to up on ME/CFS, and who sees quite a few similar patients, makes me come into his office and sit in the waiting room. We always meet in his office. He has never offered to have me lay down in his examination room for the visit.

Yes, autistic masking generally prevents means I can't help but try to present as completely well. Still, you'd think in the case of ME/CFS he would give the option of the exam room lie down upon arrival.

 

My concern living in Canada are the long wait times in the ER, over 15hrs+, patients are choosing not to go. I would chose not to go unless I'm transported by ambulance for a very serious issue.

A nurse on X wrote recently that she left her shift to go home and came back the next day to see the same patient still in the waiting room. Imagine a pwME doing this?

 

That’s normal in Uk too.

I did once get a bed whilst waiting for discharge, after 8hrs I had a migraine. I was the last of my “group” to be seen aka they forgot about me as I wasn’t in the waiting room.

The only place which had a bed for me to use was the DWP medical assessment place for work capability. I think the fact I had to lie down for an hour before I could go home might have been what convinced them I wasn’t fit for work!

 

Sorry to hear that, @darrellpf. I can't remember any consultant ever offering me the couch either - but I always just say, 'Sorry but I have orthostatic intolerance and I could really do to be on your couch now so I can have my feet up, is that OK?' and no one has ever refused or got weird about it.

 

Late last year I thought I was having consistent gall bladder attacks. When I got really bad I wrote a note to my partner of 30 years telling him I'd be back in a few days.

I went downstairs to a friend's vacation condo and laid down on the couch for two days, not eating and barely drinking, to be completely rested and to build up the determination to go through the ER process.

Arrived at the hospital about 9 AM. X-rays were done by about 7 PM. The ER doc ordered an ultrasound but suggested I come back and do it the next day. Home at 11 PM.

Back the next day at 9 for the ultrasound. I took the same path from imaging back to the ER and chairs as the previous day. Sat for 4 or 5 hours and finally realized way too many people were passing me. At this hospital you have to be retriaged and re-admitted in order to get your results so you're at the back of the queue.

Turns out I had a long term distended bladder. Catheter and 2 litres of urine. Apparently most men are begging for relief if they retain 1 litre.

Sent home with the catheter, go back about 11 PM. Was emptying my 3rd bag with lots of blood. When a big clot was nearly preventing me from emptying the bag I decided to be sane. Called my partner and asked him to drive me back to the hospital.

Re triaged. Re-admitted. Fainted while sitting in chairs. This got me an ER bed. Turns out when pressure is released from distended bladders lots of little blood vessels break. Started at 2 AM, didn't get into a regular ward until after 9 AM.

Catheterized with saline flow for 5 days before the TERP, 2 days afterwards. Oddly enough this was the best part of the experience. Fortunate to get a private room. Spend the entire week lying in silence. I actually felt good for a couple of weeks afterwards from all the forced bed rest.

 

The combination of autism and ME/CFS is interesting. The autistic desire for routine means that I can constantly override the exhaustion and PEM.

Another characteristic of adults with autism is "masking". We can work very hard to hide our traits and blend in. Many gay men realize that being in the closet is draining. Masking is more like being an actor in character 24/7, even with family and close friends. We are often only our true selves when completely alone.

I don't want to be special or get any attention, even in a doctor's office.

When my father was dying of cancer in the hospital he was at the stage where he was largely incoherent and exhausted. The doctor would come in and he would sit up, smile, converse with the doc and answer all the questions completely coherently. As soon as the doctor left my father would return to his exhausted state.

Both ME/CFS and autism can have the same kind of invisibly because we often look "normal" on the outside.