Hospital's Inability To Cater For Carers

Share information, support and advice on all aspects of caring.
My son has had to have 2 stays in hospital this year, ( the 1st stay for a hernia operation, the 2nd as he had Pneumonia). As he has Down's Syndrome and the mental age of a 12 to 18 month old child, (He is 28 years old), As such someone needs to stay with him in hospital. There is nothing in place for carers, who need to stay with their charges. I would stay during the day, my wife, overnight. My wife had to sleep on a normal chair, on the 1st stay, The 2nd stay, she asked if their was anything better so she could get some comfort, and was given a broken recliner chair. The staff didn't seem to know how to handle having a carer needing to stay, (My son has a very limited understanding of what is being said, and very basic language skills, which is why he needs someone with him to explain to the staff of his needs).
In my opinion, there needs to be something in place for carers, who need to stay in the hospital too.
On August 1st 2016 a new directive was given to hospitals, all to do with making reasonable adjustments, communication aids, etc. Ask the ward to arrange for someone from their PALS team to get involved.
On the day this directive was issued my son with LD had two teeth out under general anaesthetic. I was dismayed at their ignorance of how to talk to my son, aged 38, mental age 3. "On a score of 1-10, how would you score your pain" for example. I said there was no point in asking that. "But I need to know" was the response!!! She didn't understand at all how to communicate with M, although it was a planned admission and I'd filled in all the details they needed to know at the time of the assessment appointment.
And sometimes they have adolescent children on wards with patients over 70
I have had this with Hospital and Social Workers they have insisted to ask A questions (75 with severe learning disabilities). I have told them he does not understand so I just shrug my shoulders say carry on then, they soon give up and ask me to help lol!!! :D
But it's not just those caring for children that have problems !

Mum had Alzheimer's and, in her last couple of years, frequent hospital admissions. My sister and I had to take it in turns to be at Mum's bedside virtually 24/7 as she didn't know where she was or why she was there, wouldn't eat unless someone sat with her to prompt her and kept on trying to 'escape' - and this was on a specialist geriatric ward where you would think the nurses would have had training in caring for the elderly mentally inform.

All we could do during our vigils was nap on the chair provided for the patients to sit on when they weren't bed-bound.
The WI are currently campaigning on this issue - details here:

https://www.thewi.org.uk/__data/assets/ ... _green.pdf
http://www.nhs.uk/Livewell/Childrenwith ... ility.aspx

http://www.nhs.uk/Livewell/Childrenwith ... cation.pdf

There is a a carer support dept in every hospital - PALS will organise this for you.
Not in Wales as far as I know
I totally agree Jody.
I'm S's sole carer. He has autism, complex communication needs, a learning disability, epilepsy and gets very anxious. When he was admitted to hospital, the staff couldn't understand why someone else didn't come on shift to sit with him and give me a break. (They couldn't grasp that I cared for S in our home 24/7 - we aren't blood relatives.) They had no facilities for me to make a drink, have some food or sleep in, (yet neither they didn't want me to leave the ward.) I ended up vomiting due to a migraine as I was dehydrated and needed food and sleep. My mobility was affected as not being able to relax made my arthritis worse. They should've been keeping my strength up for when we returned home and the caring continued.
Basically it was a case of this is an adult ward and nothing beyond the basics is delivered here.

Melly1
My 92 y.o MIL with dementia had day surgery on her eye, and the poor registrar (or whoever the young doc) was, kept asking her all these questions as he 'consented' her on the form - I answered all of them for him, but he was very bewildered by it.

The 'toughie' was the 'Do you consent to this operation being done on you?' to which I said to her encouragingly 'Just nod, Granny....' so she did, blithely (not having the slightest notion as to what on earth was going on!), and the young doc looked relived, ticked 'Yes' in the box, and scarpered!

Hey ho. (The surgery and procedures and clinic, by the way, were brilliant with her - it was just that daft 'consent form' which was flummoxing!)


Re carers in hospital - maybe the NHS should take a leaf out of Spain's book, where, so I have heard (but this may not be so), all the 'non-nursing care' is EXPECTED to be done by relatives anyway! ????