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This is the reality for patients - Page 3 - Carers UK Forum

This is the reality for patients

Share information, support and advice on all aspects of caring.
Thanks Breezy
It is more than frustrating at times.
Social Care needs to be fixed absolutely.
I bumped into an ex colleague in the hospital car park her mother is in the same unit as my husband.
She herself works in Adult care and her own mother is also waiting for a care package.
We had a long chat it was lovely to catch up.
It’s a very worrying situation there are over 100 people waiting for care packages where we live,
I can do nothing , feeling desperate at times. My husband has such complex health and I can’t safely care for him at home . Beyond sad . He needs to be home ,he’s young at heart and in the time he has left doesn’t want to be in hospital.
Spent 3 years in hospital as a young man because of hospital infection, he’s had enough but never moans ,he’s amazing. Was his birthday today we shared a gin and tonic staff were lovely. Made cake but he’s got chronic sickness didn’t want it had bad dialysis session earlier but we had a nice time.

Sympathy for all carers and what we and loved ones have to endure at times x
You are absolutely doing your best and try as we might, that's all any of us can do. Care is awful at the moment both inside and outside of hospital. This makes it doubly frustrating that care is so dependent on unpaid carers yet we are ignored, treated like children, our opinions are dismissed, and all for £69 a week if you're lucky. I've heard and seen for myself, some awful stories recently and it can only get worse. I would almost (ALMOST) feel sorry for the incoming PM taking over the appalling state of the NHS and social care alongside the cost of living crisis (and of course they are both intrinsically linked). If people can't afford to eat properly or they take on too much extra work to pay the bills etc then health will decline and our dependency on the NHS will increase more and more. It such a long term complicated issue with so many facets but there are really easy things they can do, especially at ground level, to make things better.

I hope they can find carers quickly and that the building work goes smoothly so your husband can get home soon. He's lucky to have you fighting his corner xx

you are doing an amazing job. I truly help a care package is sorted asap.

The social worker called me. They are asking everyone in hospital waiting for care package if they would go into residential. He reassured me they understand my husband is a firm no and this is ok. I’m confused by this as he is taking up space in palliative care ward although he was put there as he is so complex rather than needing palliative care although he needs a lot of care. But it seems he can stay there thankfully and won’t be moved onto ward which he will really be upset by
Anyway there are no paid carers available and packages are being handed back from agencies as they don’t have staff.
There is absolutely nothing we can do. Social Worker did mention direct payments but I’m not keen on this as don’t want the extra work. SW didn’t think there was any point. And also the private Carers situation is the same no staff.
Are other people experiencing the same situation. I think it is nationwide.
Staff are also leaving where he is and he was told staffing levels are dangerously low. The pay is so low for nhs staff and paid carers.
I do feel sad at times as powerless. Thinking he could still be there Christmas at this rate.no pay rises in site so no paid carers . Hopeless
Hi Ruth, that's so difficult for both of you.

Are the ward managing his dialysis well?
Meanwhile, how are the house alterations?
Hi Bowlingbun
Thanks for reply
The builders are slow awaiting delivery of a wash and dry toilet. But all that’s been done so far fine looks tidy.
He gets picked up by ambulance and taken to the dialysis unit. He’s always exhausted after and the staff are attentive and very aware. They give him a huge packed lunch when he goes which he never eats ! most of the staff are brilliant. Just not enough.

Spoke to our LA Councillor responsible for Social Care earlier, she is well aware of dire situation and has had many emails and calls about this. Got to try !

Wow it’s humid here waiting for the rain
Hi Ruth,

The shortage of staff on wards and at home is dire. It's hard graft, long hours, poor pay for often skilled work. We all know what the solution is but seem the government is ignoring this. I'm glad the SW is listening, being truthful and not pressuring you.

Good that husband is being cared for and that adaptions are progressing.

Thanks Melly

I really don’t have any evidence that those in power are doing anything to sort the crisis.
Why don’t they start by raising the pay this would make a difference . They all know this must happen.
My husband is not doing very well and this makes me worried that time is passing !

Got a lot of support from family and friends thankfully but still very hard knowing that I can’t change anything.
I do feel anger and trying to look after myself eating well and going for massage regularly. Been over 8 months now he’s been in hospital .
Best wishes to you and everyone
While direct payments can work really well in some circumstances, be very clear that they do not magically change the lack of workers into a surplus. My first experience of supporting someone who had care needs in a very isolated area was offered direct payments because no one was able to recruit staff. I asked how a direct payment would change that. This was in 2003. I'm still waiting for the answer!

The problem was, as you rightly pointed out, that the pay on offer for the skills required is abysmal. And, frankly, even if it was "only" a case of bum wiping to be done - well they earn every penny. During the pandemic, shop workers and lorry drivers were seen as essential workers - as they are - and people went on about how low their pay can be. Yet care workers can often earn more in Sainsbury's for less emotionally challenging work.

Until that's sorted out, there are going to continue to be problems recruiting and retaining care staff.