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Share information, support and advice on all aspects of caring.
I wanted to also create another thread, asking people what their experiences have been of hospital care for their relatives, specifically care received by the very vulnerable, ie mentally ill, blind, learning difficulties etc.

I ask because I worry about the future when I know mum will need to go into hospital at some point and I know she will be terrified. She's mentally ill and blind and I know from witnessing the poor care my dad received in hospital on many occasions, that her care will be even poorer.

If anyone has any tips as well, please post them. I know that I wouldn't be able to stay with mum all the time in the hospital and i also know she would not understand what was going on.

I've managed to look after her well enough at home to keep her out of hospital but, unless she dies peacefully in her sleep at home, it is highly likely she will face the prospect of NHS care.

I'm not trying to say that all NHS care is no good but there always either seem to be staff shortages or many of the nurses don't seem to either care or have the time to care.
I do not like hospitals , my first thought is how long will they be in , we do need them for obvious reasons, but the standard of the every day care is not fit for purpose, STAN since 1997 has been in patient for about 12 weeks(mini stroke each time) ( not counting the last 2 weeks of his life ) and if i had not been with him nearly all the time he would not have even been fed or toileted, i fed him at every meal took him to the toilet washed him,shaved him, even arranged to cut his hair once , and even made sure he had clean p.j`s ,the hospital still had no problem in losing his teeth , watch, spectacles , hearing aid ......
one good thing as his full time carer they are happy to discharge them sooner rather then later ........ at no extra cost ....
It was really strange reading your post Lambchop. Because I am in the process of a major fight with our hospital regarding the care of the helpless. I am unable to go into much detail because of the severity of our case.

The first time I complained about the care of my husband was thirteen years ago and still things haven't changed. I am taking our case to the highest of high to try and get a change in the way the most vulnerable are cared for in our hospitals. It's high time something major is put into place to train nursing staff to care for our helpless loved ones in a humane way.

I have sent a copy of our case to our local carers support organisation.

You should be able to leave your loved ones in the care of so called "professionals" without having to worry.
When my disabled OH faced cancer surgery in2006 the surgical ward made it clear they had no staffing levels for "special needs". After discussion with OH`s surgeon I had a copy of a letter he sent to the charge nurse arranging me to provide OH`s care needs from 8am-9pm daily. It caused a bit of a stir and we used to catnap at visiting time as I was so exhausted with the heat and the extra work at home every night with laundry etc., but it was worth it for OH`s peace of mind.

I also helped at mealtimes with three other men on the ward unable to feed themselves. One had obvious signs of dementia which had never been diagnosed, and when I met his wife in the lift on the day of his admission she was planning five days away while he was in..........to get peace from his nagging. She was a well educated woman and hadn`t realised there was anything wrong with him.

OH always says no matter how ill he is with infections he won`t go back, and so far I have managed to nurse him at home, even through rigors, which two doctors failed to notice.

Take care
one of my friends visited her mother daily in hospital, a couple of years back. She was back and for for a couple of months. In the next bed was another old lady, who had a nightdress on that was dirty one day. Apparently until then she had been spotless. My friend talked to her about her laundry arrangements and there were none. The hospital would not do it, and this lady had no family. For the rest of her stay in hospital, my friend did another lady's washing as well as her Mum's.
It is the hospital she and I both nursed in, and we had a washing machine and did washing for anyone who needed it. What has gone wrong, that even patients hygiene is not respected and cared about?
Many thanks for your replies. It appalls me that you've had bad experiences and confirms my worst fears. I'm also, however, full of utmost admiration after hearing what you, your friends and your relatives have gone through and how you've even helped other patients on the wards - true heroism!

You're wonderful people that's for sure. I agree with Dorothy's last sentence 'You should be able to leave your loved ones in the care of so called "professionals" without having to worry'.
To be scared of your loved one going into hospital is crazy. Dorothy - very best of luck with your case.

We all know that the standard of nursing care has deteriorated a lot. We've all experienced those nurses who rush around (usually away from you) and never have any time for you and think you're being a nuisance. The senior nurses don't fare much better. They don't set a good example and you have to keep bringing issues to their attention only to know that, for the next patient, things won't be any better.

It seems that nurse training has got worse and vast changes need to be made. I would really like to be able to improve the situation. As it is, I do my best to prevent mum needing hospital care and just hope she dies at home in her sleep without needing to go to hospital in the meantime.
Such a simple thing.........wristband with allergies on was not put on OH before his third operation. Nursing staff thought I had lost the plot when I put my foot out to stop his bed being wheeled off the ward to theatre until it was done. Porters told me it wasn`t the first time this had happened. The allergy was to valium, given once as a premed many years before and resulted in the operation being cancelled as it took three days to wake OH up, as he couldn`t tell them his name in theatre before the procedure.

Take care
We avoid hospital admission at all costs. as they are geared up for ordinary people who are ill, not disabled people. The hoists/slings for lifting are not appropriate or compatible, it's impossible to get medications given at times needed and there are far too few staff to provide even a minimal level of care. Most ward staff are not competent (ie untrained) in specialist techniques eg gastrostomy feeding. When my son has to go in, he invariably ends up fitting even more and is therefore even more at risk. We have oxygen, suction and nursing care at home and last time managed to get intravenous antibiotics administered as out patients x3 times a day. Leaving him there alone for even minutes isn't an option - if his own nurses can't cover all the shifts when he's in we have to fill all the gaps, sleeping in a chair next to the bed. We've been told he needs one to one 'specialing' but they don't have enough staff to provide it. So we have to take all his equipment and staffing in with him - and the problems that causes, you just don't want to hear about.

Mencaps's report 'Death by Indifference' is alive and well in most of our hospitals still. I've posted on this and similar issues at http://nedluddcarer.blogspot.com/ - see April and earlier entries.
Dear NLC

I'm so sorry to read such a distressing story involving so much stress and worry for you all.

It's crazy that in a rich, developed country, we should be scared to go to hospital!

I've been discussing this in another forum and these are some of the conclusions

what can we do? at a macro level - get informed; remain informed; always vote; join pressure and activists groups (they get change) and use your local politicians and all other vehicles to express your concern (for goodness sake we pay our politicians to represent our views!!! tell them what they are)

at a micro level i guess be aware of your legal rights and entitlements and ensure that they are upheld at all points. The resource i see under used most is the feedback systems that exist everywhere. Nothing will ever change unless we all take a little responsibility and contribute to the vehicles of change.

Provide feedback - lleave comments on all GP surgeries and hospitals. This feedback is then left for all to see who visit that site. Its open and transparent) if we all just took ten minutes (i know everyone's busy) to leave some feedback when we use services then that it will influence future change. all public sector bodies and departments have a compliment and complaints system. People are employed to collate this and feed it back to those with power. one voice will do nothing, hundreds and thousands will be heard
Hi Lambchop.
Last summer one of my sons died suddenly in A and E. I was not asked if I was okay to drive home(and as I cannot remember the journey then I probably was not safe), and we were not even offered a glass of water, let alone a cup of tea. When I was nursing,the first thing we did for shocked relatives in the case of a sudden death(as well as inpatient deaths),was to take a tray of tea to them.
It seems to be policy now not to give a tray after a death, as someone else asked me about this, as she had been surprised when she and her mother were not offered a cuppa when her father died suddenly.
Where would I make a comment about this,something that is such a little task for a nurse, but means so much to a family.