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What has your experience of the care system been? - Carers UK Forum

What has your experience of the care system been?

For issues specific to caring for someone with dementia.
Hi there,

I am working with the Social Care Institute for Excellence (SCIE) and we’re looking for people who can talk about their experience navigating the care system.

We recently launched 'Find Me Good Care’, which is a service to help people navigate the care system. We are now on the lookout for stories from people who have had a difficultly working their way through the care system to find the right kind of care and are willing to talk about their experience. What was it that finally made the difference in finding the right care? Or perhaps someone has used Find Me Good Care and can talk about how it has helped them?

We want to hear from you if you have recently struggled to find the right kind of care and support for yourself, a relative or a friend. The need for care and support could be due to disability, older age, a temporary illness or accident, a mental health problem or a child who needs care and support turning 18 and transitioning through to adult services.

Please email scie@forster.co.uk if you are willing to talk to us about your experiences – and we will come back to you if you need any further information.

Best wishes,
I have asked mods if this should be moved to the research and surveys section.
Hi Ladybird

Although you're right that strictly speaking this should be in the research section, we're checking first to see if this is a project specifically about dementia. If it is, we can move it and leave a "shadow" topic here. If not, we can move it without cluttering up the dementia board. Once it's moved we can't change the "shadow" option.
It's been rubbish, I am my wife's full time Carer. She was in hospital for 7 weeks, between Jan and March 2012, I had to have emergency surgery in April and it took 3 months for me to fully recover. We were promised a Care Package and an Assessment to see just what help we needed. Neither materialised, if it wasn't for the kindness of our very special neighbors and friend we would have not managed.

The Care System, what Care System?
The whole system is a shambles!!!!
Hubby with stoke, partially sighted, mobility issues, can't dress/wash himself and vascular dementia so cannot work out how to do things.
I had a hip revision after hip re-surface went wrong- 5 years of struggling with hubby and a dodgy hip.
Social Services kindly(?) sorted care out for me to wash/dress hubby.
After 6 weeks they left, the problem was I still had 2 weeks NON-WEIGHT bearing, on 2 crutches because of a bone graft with all the usual screws/pins.
The day after they left hubby had a bowel accident so had to clean that up then the day after a pee accident, cleaning it all on one leg, not being able to bend down.
I am still having counselling from the fallout as I was suicidal.
SS lied on the end of care assessment which I refused to sign and sent back with all the corrections.
Although several requests have been put in for district nurse assessment, nobody has rang or turned up. My husband came out of hospital & care home on the Friday before xmas.
care system is a load of rubbish as many people here care for people with different illnesses i care for my husband he is blind has cp and epilpesy I also have mental health problems and physical problems with my spine and hips my husband is actually stable at the moment but I have had three mh workers who prove to be hopeless and accessing further help for myself has been a no go area to the point now where I am giving up in asking for help me and my husband co care for each other and it gets very stressful when I am unwell as i can not cope he finds it stressful when I am unwell as he does not not kow what to do so they care system is a load of crap
Tonight carers arriving at 8.30 to put my husband to bed when they have been coming at 9 or 9.30. It angered me because they seem to think they can turn up any old time and you have to accept it. It angered me still further when I did not answer the door as I was not expecting anyone at that time when the woman said 'it is cold out here'. I didn't tell them to come so early. As my husband has recovered so much I am quite capable of seeing to him myself and so told them to get lost. There will be a review towards the end of the month. I am very tempted to finish it until such times as he becomes ill again. This care package was put in place when he was in hospital and appeared to be helpless.
So far so good.My step mum has had carers now since Feb 2012.I find you have to take the rough with the smooth.After all you all have to work together and it the whole package if they are happy Mum is happy it's work in progress and communication is important for all of us. We can all have a bad day ,be aware of everyone and their feelings and above all have a good sense of humour, laughing and singing help as and keep smiling . Image .Take things slowly and try to think how your loved one is feeling is important too,
My mother has severe dementia, still living with us as we can't find alternative care that is good enough - don't expect perfection, but just the 'care' aspect of a care home being carried out. The staff are just rushed off their feet and can see only to the basics. Respite stays have been a disaster.
In other respects, community care-wise, we realised years ago that we are all alone with this. Husband has always said, after being passed from pillar to post in trying to get help, 'we're on our own, love'. We tried carers coming in - they wouldn't turn up, or stayed only minutes...
It's a disgrace, but I fight on for Mum because she has done the right things all her life, never causing anyone any trouble, and doesn't deserve poor/inadequate care.

PS Just wanted to comment generally. I wouldn't have time at the moment to be interviewed about the whole sorry saga (10yrs).