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This is the reality for patients - Page 4 - Carers UK Forum

This is the reality for patients

Share information, support and advice on all aspects of caring.
I had a chat with a very helpful woman who runs a not for profit care agency community based. They have been running 2 years and are close to our home so would cover us. They are actively recruiting local people to be paid carers. She was totally supportive and honest and spoke about the huge demand and lack of carers. They are trying in a small way to provide a service.
However when we spoke there are 150 care packages out for tender in our county and with my husband needing 2 carers at a time this will be a challenge. So good to talk to someone in the know but as well very worrying.
I am in contact with a journalist who I will be speaking to in next few days . Will highlight what’s happening although everyone knows , we need actions not words.
Sadly my husband is now fed up unsurprisingly and has more medical issues . Sure being in hospital is not helping him at all,understatement.

Think the staff are at breaking point sometimes, caring for lots of people who should be at home doesn’t help. Can feel the stress with some of the staff at times. Not good
Things haven’t moved on at all with a care package.
At the moment the health board have secured beds in residential care, this must be costing a huge amount. We asked the question as to can they force someone to go rather than stay in hospital, apparently not but ot did peruse that he hopes it doesn’t come to that.
I have a call with BBC journalist booked and our MP wants to meet with me soon. I just want people to know what is going on for families, I have no expectation at all that things will change though sadly.

My husband was found to have a blockage in his stomach ,again this was only discovered after I asked Renal team to see him and Dr was concerned and arranged X-ray. Beggers belief as he’s had problems for weeks .

For the first time since he’s been in hospital over 8 months he is feeling low unsurprisingly .
Doesn’t help that he’s hearing all about lack of paid carers. So sad to be in his position.
Husband still in hospital and there is still no care package insight .

As usual everyone I come into contact with says this is the worst it’s ever been and no improvements likely.

He needs 2 carers and this of course is even more difficult,

Reluctantly and as a last resort I have put myself forward to be given training . Still lots of discussion to take place and SW has explained that they will continue to look for 2 carers and if things progress and I want to work along side 1 carer this could be easier to arrange.
We did speak as a family and non of us think he should remain where he is and he needs to be home and this is the only solution. I know I will be exhausted but feel have no choice..
I will see how it goes with the training it’s not husband’s preferred option either. Even if there were private carers where we pay this would be difficult for him to agree with as he is worried I’m financially ok after he dies, although realistically I would be fine. Coming from family with no money and working all his life he worries .
So it’s either he dies in hospital or I step up !
Hi Ruth,

I'm sorry to hear nothing has has moved forward and that you are still having to fight for him to be looked after properly.

I agree you will be exhausted - I suggest you negotiate with your husband and those funding his care that he will go into residential care at intervals to enable you to have a break. I know neither of you will be keen on this idea, but if you go under then he will end up there anyway.

Thanks Melly
That’s something I hadn’t thought of but will try to get him onboard with breaks.
Both our children would be happy to be trained and support me but this is not an option apparently with restraints and staff but will keep going on that.
Social care is broken
Ruth, has anyone had a proper discussion with you about all the optioins available?
Given the fact that he has lots of ailments, is he going to have NHS Continuing Healthcare, 24/7?
If so, you should be given the option of arranging the care yourself, through Direct Payments - a budget for someone to deal with the admin should be included.
I would have thought that a qualified nurse taking a career break due to a young family would jump at the chance to help with your husband. If you knew that during school hours you could have someone there full time, you could then have that as your time to sleep, and "me" time.
You can't even begin to find someone to do this until they tell you what the budget will be. The cost of him still being in hospital must be astronomical?!
Continuing Healthcare can mean 24/7 at home.
Google Barbara Poynton Continuing Healthcare for further info. The subject of a Panorama programme a few years ago.
(Not sure if I have the spelling of the surname correct. Might be Pointon). Visitor due any second, no time to check myself I'm afraid.
Thank you Bowlingbun
Have found the link to the challenge and will spend time later looking at this.
The SW told me he had spoken to person about husband being funded by NHS continuing Health Care but decision was he did not meet criteria but I will look into this too .
Direct payments have been discussed but was told still would be lack of carers if we pay . Will also speak to Sw about this was not keen with having to be employer but was feeling overwhelmed then . But as you said could see if I could get help with admin. One of my sister in laws ran a business !
Basically no carers full stop where we are though
But I would possibly be able to find someone as you mentioned. Sometimes I feel like asking some of the nurses where he is as they have good relationships with him and are clearly overworked but caring for him alone would not be same as working full time.
Again really helpful and will be in touch with SW when he’s back from leave.
IF there had been a proper Continuing Healthcare Assessment, you and your husband should both have been involved, and you should have been send a WRITTEN copy of the reasons for the decision as soon as possible afterwards.
Your next step should then be to ask the hospital for a copy of the written decision.

If they didn't follow the procedure properly, it was UNLAWFUL and should therefore be done again, properly.
See the "NHS Continuing Healthcare Framework" for full details.
You will find a copy of the questions they should have asked.
I will check if a proper assessment was done for NHS continence Health care,If it hasn't I will make sure they do one.
I haven’t got a copy of the assessment for care don’t know official name of the report sw did so will ask for one. It was the one when they recommended 2 carers 4 times a day

My husband mentioned to physio today that I wanted to be trained as one of the the carers for when he’s home because possibility of two seems unachievable
She said she does not think that would be safe and he needs 2 professional carers. Upsetting and seemed to be a comment not an assessment from whole team so will wait and see. They tried to get him to stand and he did not have the strength but I have always known he will never walk and see the things I would have to do would not be about making him mobile anyway.
Feel I need to have a discussion with someone can’t just wait and see, need to know what the thinking is.
However if he is so complex and they see him as not being suitable for me and another professional carer then surely he should be under Continuing Health Care.
Hope this makes sense .
Thank you
Ruth, it depends on the care agency too. Some are happy to have a family assist, others aren't. However, being trained would be useful for emergencies/ if paid carers were delayed etc