New resources to support carers with taking a break

All about caring
41

I’ve never taken an actual holiday.

As for respite, caree going to an respite venue for a break is no longer an option, as the last one within a reasonable distance (travelling long distance is dodgy for main caree) was closed following a shortfall in funding years back.

They can’t go long distance without someone close to them, so what would happen is we would make the 200 ish mile round trip to the venue, I would actually stay on-site (there was a relatives quarter on the first floor, always empty as most visitors were severely disabled but not dependant on family) in case of emergency.

You lose a day of the trip just checking in, because you would be having meetings with the palliative team situated nearby on top of going through medication and all manner of procedures (was a unit for people with very unique needs)

Though there was a limit on how regularly you could use that particular venue because it was a specialist unit, being for children and young adults with complex needs including end of life/palliative care demand was through the roof and you could not block book the stays (like use all of the allocation in one go).

Also having respite at home is not as straight forward as it sounds, because there are other persons with care needs here so a more holistic approach is required, but because 2 caree’s are under LA/SS and the main one CHC (with no SW) that’ll never happen.

Money helps but does not change the fact neither the highly skilled staff or respite venues for working-age complex needs simply don’t exist anymore, their not “profitable” enough for the sector, its why everything has shifted to older patients (who often also have their own assets to bleed dry)

42

It’s a crazy situation, because if carers like yourself knew that they could book a complete break every so often, as they can in Australia, they would be able to care for longer, overall, saving the state an absolute fortune.
The real problem is that those making the decisions about closing respite centres and putting more support “in the community” really haven’t got a clue about the bigger picture.

43

Said bigger picture has also alluded CUK , BB ?

Good idea but … doomed to failure for 5 / 6 even 7 million carers … costs allied to providing replacement care … either at
home or in a care / nursing centre … most of which have been closed down since the start of the cutbacks in 2004.

A pity CUK did not sound us out first ?

We would have saved them the time and resources.

44

I feel differently about this, in that they do see the bigger picture, and its expensive.
Its why they so eagerly close the centres down and focus on an “in the community” approach (i.e. replacement care at home)

Care in the community is not for everyone, but it can and does work when executed correctly, however to the CCG’s/decison makers this is merely a convenient coincidence, these people don’t really care about those they have a duty of care to, just balancing the books…

But we’re now standing over a chasm where those replacement care costs are rising to or in excess of what those needs would cost if they were in a home, which is why those with at the ceiling of what would be highest/complex care needs, being pushed into private hospitals which are essentially institutions, such as the ongoing saga of ATU’s the government keep telling us would be closed (yet still house some of the nations most vulnerable young people and adults) due to the neglect going on in them

These days you have situations where people end up going into care not because they have deteriorated significantly enough to justify it, but because its so difficult to cover their needs at home, the subsequent gaps leave them at risk of a “poor outcome” (which is NHS lip service for someone dying through neglect)

Its certainly not a lack of knowledge, I know that I should be getting some sort of break, be able to sleep when I’m tired, deal with health issues when I need to (not when its convenient), but those services as you say, don’t exist anymore (postcode lottery aside).

45

One could also argue … why bother ?

Family / kinship carers are picking up the slack nationwide NO MATTER the number of cuts … both to services and centres.

Carers bleat … fine , let 'em bleat … they still carry on caring … don’t they ?

A view from the other side of the fence ?

Or … the harsh reality of survival in CarerLand as is in 2019 ???

46

Because a society is judged on how it treats its most vulnerable, else whats the point of any of it.

My main caree of the 3 would be one of those persons stuck in an ATU for the remainder of their life (which in that environment would not be long at all) with no quality, access to relatives, and all for the purpose of lining some companies pockets for putting them in an early grave

Its not a ideal situation, its affected my own life in ways I couldn’t begin to describe, but I could not live with myself knowing I was part of that process, they did not choose to be born with the health issues they have and have as much right to lead a normal life as anyone else even if those that were supposed to help them had written them off from the get go.

Not to be argumentative or anything I just have some strong feelings on the matter. Check your inbox :slight_smile:

47

Could not agree more !

Trouble is … on the other side of the fence , my previous post sets it out in plain English what’s really happening out there.

( Society ? As of 2019 , the preservation of wealth and power for the few at the expense of the many ? No change there then …
since medieval times ? )

Gandhi !

Curtain call … again !

850×400 60 KB

48

Care in the community was introduced to get rid of care homes and instituations, young disabled were in care and subject to rules you can’t do that you can’t do this- go to bed at 10pm etc.

To give the disabled their own home, their own space their own independence, it worked well then then the big crunch came along, massive cuts in support and i have seen it first hand been there and bought the t shirt.
Cutting support workers, cutting the shopping service, cutting the cleaning service, cutting wardens, cutting the handyman service, cutting the disabled transport, cutting access to grants, cutting benefits BUT increasing care charges.

Contracting out the care to private care agencys who one carer might have to visit 30 clients in a day, how can you provide any sort of good service?
I have seen all this and a lot more, making it just impossible for the disabled to live independently in the community unless they have VERY GOOD family support.

But what if there is no family, who provides the rest of the help/support etc, that is the key question?

I am effectively doing everything above as acting as support worker, shopper, cook, cleaner, benefit worker, transport driver, benefits worker, socialising co ordinator, crisis team worker, night care worker day care worker and i don’t even get carers allowance. And a break whats that last time i had a holiday 18 years ago.

In 10 years I bet 95 per cent of disabled will be back in them instituations, its a step backwards not forwards in a so called civilised society.

49

Thats what I’ve been getting at, those institutions never went away, they exist now as the likes of ATU’s (assessment and treatment units)

At least 2000 people with learning disabilities are permanent “patients” in them, every few years there is another scandal of neglect taking place in them (winterbourne only bought into the public eye what has been going on long before).

The companies running these facilities (usual “friends with benefits” often from outside the UK) charge the NHS between £3000-£5000 per week per placement

They have next to nothing in terms of rights/freedoms (human rights are non-existent), poorly trained/abusive staff, heavy handed use of restraint (both physical and pharmaceutical) families simply aren’t told where their loved ones are staying and end up almost bankrupting themselves just to get them out of the places, people can and do die, often in a premature and avoidable manner in these environments.

A few staff get jailed, politicians utter the usual rubbish of lessons being learned, then the company start up shop elsewhere and the cycle continues. Once in a blue moon it might see the day of light on Panorama and the 6 o clock news.

https://rightfullives.wordpress.com/2018/10/29/guest-blog-alexis-quinn/ - I couldn’t find the original page I had on this story, but this is basically a lady that found herself locked away in one, and who eventually fled Britain (to work in Nigeria as a teacher)

https://markneary1dotcom1.wordpress.com/ (a popular blog amongst the carer community, which came up recently in another thread on the board) is another example, through his challenges of rescuing his son from a similar fate. The ordeal left his lad traumatised, he will never forget what he was put through.

Its horrifying because this should not happen yet it could to anybody. Its like the health services dirty secret.
Most people simply aren’t even aware of these things going on, look at you like an insane person at the mere mention of it.
Not many things genuinely frighten me these days, than the threat of a loved one actually ending up in such a place.

And you are right, it is happening more and more because resources that should be enabling people with complex needs to live independently are being stripped away and government ideology tars the vulnerable as a mere expense (side lining any inherent social obligation to protect them) which is a strange paradox in an age where we weigh so heavily on difference and inclusion of all peoples.

Apparently that just does not apply if you are not well or disabled.

I agree with you on the social shift reversal. Civilised country my bum!


My beards better!

50

Was told ‘The take a break’ service of 3 hours a week could only be afternoon only ? Cannot be right,
as informed mornings as well, so seems to me told large fibs?:thinking:even backed up by ‘Princess Royal trust’ saying the same only afternoon? Why are people seemingly lying about people’s rights? Baffled​:relieved::thinking:

51

‘Take a break service’ would only offer 3 hours only afternoon! Not morning
as I requested! A Certain gym membership I have (which is wasted as cannot go!):thinking:!
Has a morning only facility hence why I wanted the morning but not allowed to go
As cannot get that morning cover​:rage::rage: …Which brings me as to why they never offered
D/P which I had forgotten about for Carer! With D/P can get my own ‘Sitter’! Interestingly
£12 P/h as against £18 p/h with agency??? Obviously I could just take the afternoon
council pay X3 £18 £54 each 3 hours: to agency X 4 monthly £216🤔 talk about waste money!

52

My partner had a weeks break at a Revitalise centre! Never again! When collecting
him to bring home the manager informed me they would not be able to have him back as he was
Unmanageable!:rage: I was gobsmacked with the attitude and at £1500 ( but we got discount)
Supposedly for time of year does this mean lower amount to pay and less physical help for
The person??:thinking: There fault for not doing a proper assessment in my view then? Revitalise is
Supposedly for ANY ONE disabled! I gave certain details of partners ways of doing or asking for something etc which I feel we’re blindly ignored! as you carefully waste time when arriving
To explain things staff don’t seem to pass to different shift workers all details that can be important
My partner is confined to wheelchair so cannot do ANYTHING for himself so stuck in one place all day! In free not of TV or whatever! But simply for a member of numerous staff …(Mmmm
I manage everything on my home with him at home!:thinking:)…to simply say something to him for five
minutes! Makes me wonder what on earth they give the person for the money pure pure greed
For that amount of money I could make be have expected one to one ( which wasn’t expected)
Just pure common sense of looking after someone: …after making official complaint…they make excuses even had the cheek that he would be able to go back if I accompanied him for the break !!!
How the heck is that respite for me as a carer! And would be paying full whack to stay what an
Insult! Me would be dong the care! Makes you wonder what sort of facility Revitalise really is
Where as lots of other disabled people in wheelchairs can mobilise themselves etc big big difference
For someone who needs physical for everything!!!

53

LA can do,’Take a break’ but not afternoons! as carers are all busy in the mornings! Wanted Morning!
But a different ‘Take a break’ service can offer morning sitting (as well as all day) but not weekends!
But cannot do personal care! So goes from bad to worse🤔what happens if partner wants the Loo?
So sadly cannot get any Take a break! Nothing since first being told about this 2 years ago!
Then recently have been informed LA should pay a D/P fr this! Common sense! Then can sort myself out! after all look at all the money I’ve saved them!:rage::rage:agony invoice per 3 hours £54 times x4 x say
50 weeks a year! :thinking:Yet i can get people to get £12 P/H…the money is there…

54

Hello
Just wondering if there are also any support services for carers in Scotland (Edinburgh)
Thanks

55

Internet search … SCOTTISH CARER SUPPORT … reveals a host :

scottish carer support - Google Search

56

each carer have to be entitled to an annual excursion. My buddy cared for her mum for decades, there has been a lovely respite centre that operated like a inn, you could book your slot well earlier, so you could plan a right excursion.

Signature removed by moderator, as it promoted another website.

57

Thank you for the information. Will have a look, but not sure if severe mental health partners breaks would qualify :-???

58

David, what LA do you come under?

59

There needs to be local resources for carers and their families. I have not been able to find anything in Epsom for carers my age. So I drive to Kingston for my dose of respite care once a week now.

60

CUK have remained quiet since this thread was first started.

( Another recent iniative that blew up in their faces … like Fairer for Carers ? )

Our FaceAche colleagues mirror image the problems … cost of replacing oneself as a carer.

Be nice to finally know IF the CUK scheme is " Free " or … and we suspect … depends on whether one has the financial resources
for someone to look after their caree … even for a few hours a day … in every year.

Needless to add … for around 4 MILLION carers … a break comes a poor 4th. … after eat / heat / roof.