Launch of 'Caring Behind Closed Doors' report

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Dear Carers UK members

Carers UK has launched a report on our survey of carers’ experiences during the coronavirus outbreak on the BBC 6pm news this evening. Unfortunately we were not able to inform you of this beforehand as the news was embargoed until 6.30pm. The report Caring Behind Closed Doors is based on what 5,000 carers and former carers have told us and I would like to say a big thank to everyone who completed the survey.

In the survey, you told us you were providing more care as well as spending more money than usual, on top of worrying about what might happen to the person you care for if they get ill. You also highlighted issues such as difficulties in accessing food and medicine, the impact of local services closing and not feeling that your caring role is recognised.

You can read the report here: http://www.carersuk.org/images/News_and_campaigns/Behind_Closed_Doors_2020/Caring_behind_closed_doors_April20_pages_web_final.pdf

If you would like to share the report on social media please use the hashtag #CaringBehindClosedDoors

We really appreciate the time you took to fill in the survey and would welcome your comments within this thread. If you have any questions about any of the findings we will endeavour to answer them as quickly as we can.

Wishing you all well

Michael

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Michael

Very well written report.

Sadly, brings it home just how difficult carers lives are, mine included.

Have forwarded it with an email to my MP.

No matter how hard hitting it is, and it is - it will be hard to get anyone to take notice.

But we must try!

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Thank you Carers UK

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Thanks for your comments so far.

Just after the BBC report was aired, The Guardian published the following article with key findings from the report.

Family carers in UK at breaking point as coronavirus closes support services

We’ll share other media coverage on the report with you during the day in the main topic on Carers UK media coverage during the coronavirus outbreak.
https://www.carersuk.org/forum/44/carers-uk-media-coverage-during-the-coronavirus-outbreak-40246

Michael

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Thanks Michael

I do think the Government think because carers can claim carers allowance and work to the earning threshold. That all carers are in this position. Rather than understanding their are many who just receive the allowance. And are at home 24 & 7. Because the level of care they provide doesn’t allow them to work outside the home.

And of course if you are in receipt of your state pension. Carers allowance not longer applies to you.

I think it’s about time we had a tiered system. Of course the Government would properly say it too complicated. Given what the Government has already achieved in financing the rest of the public/country. Through the pandemic I would have thought this one to be quite an easy task.

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Agreed, we have been fobbed off far too long. 35 hours is a week’s work for the rest of the country. Carers on duty day and night, 168 hours a week, deserve far more. In theory via Direct Payments, but as LA’s have constantly had their budgets cut by the government, they refuse to pay. The proper respect and funding of carers pay needs to be dealt with on a national basis, not left to local councils. Everyone is bleating about lockdown for a week or two. Some of us have been locked down for years! There also needs to be a longer period for people to receive A after a loved one dies or goes into long term care. It also needs to continue when a loved one is in hospital, caring doesn’t end then, with nighties to wash, another house to look after, meetings to attend etc.

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But not everyone can get carers allowance and not everyone is told about carers allowance, people are missing out.

And the government think provide carers allowance, provide carers 3 times a day and that’s enough.

And that familys are willing able to do the rest, familys are busy or miles away.

Sometimes there’s no family, so what then? left relying on friends/neighbours.

The Council is just NO NO NO, when you ask for more help, it should be YES YES YES.

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I would like Carers UK to really PUSH with regard to parents getting Direct Payments from Social Services. They are supposed to give the caree a real CHOICE in who cares for them. Usually, that would be family or friends, people they knew. Employing an agency really cannot hope to provide the same care as a parent.
At the moment parents get NOTHING that truly reflects either caring non stop 168 hours a week.

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Thanks for all your comments and suggestions so far, as well as for providing further detail on the challenges you have faced as carers. I will pass these onto our policy team and should be able to post some responses from them next week.

Michael

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When the Government do speak on carers allowance. It’s can be referenced as if all carers claiming carers allowance. Are on Universal Credit - many are not for varies different reasons. Additionally, as some claimants haven’t needed to switch to UC. As there as been no change in their circumstances. Which would led them making a new application. And coming/transferring of the old system to the new one.

There is an assumption also that all carers are on some from of benefit/s. The Government also reply on pension credit to top up or fill income gaps.

Carers want to be recognised in their own right. Not always part of a benefits system. But recognised as providing care in the community. Just like social care workers.

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In a recent email from my MP he said its a natural instinct to care for family members…

Well actually No it isnt


Its not a life choice. This is not what I chose.

I like many others have no choice.

Its suits them to think we want to do it!

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sunnydispositionI just love the last sentence.
There is an assumption also that all carers are on some from of benefit/s. The Government also reply on pension credit to top up or fill income gaps.

So no carers benefits for us our daughters full time carers. In fact it’s taken 18 months to get a turning device to transfer our daughter from her wheelchair to a bed, so that we can take our daughter away for a few days, or should say when the lockdown is over.

My wife and I are in our mid 80s, but we care 24/7 for our severely 52 year old daughter (Cerebral Palsy). We have been trying to arrange a visit from a Social Worker for quite a few weeks now. Especially as my wife is now losing her memory and is in a great deal of pain (not constant) from bile duct stones. Was due an operation prior to Christmas, but this was delayed as for some reason they thought she was an hemophiliac. Her blood tests appear to be confusing them, she does have a blood disorder called thalassemia minor, but that is not a problem as such.
The reason we want to see a Socilal Worker is to arrange the care of our daughter which could be in the near future. The response was when this virus problem is over we will get someone to visit you.

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Harry are you able to do some form of video face to face call. On your phone laptop or computer.If you can I would insist that the adult social service team. Make a time to call you and discuss your current situation.

Prior to that call. I would give them a list of points/issues you will be discussing. Have you had a carers needs assessment done.

There also needs to be a needs assessment done for your wife. So three in total one for each of you.

If not this could also be done by the above method. There is no excuse for Social Services not to make an appointment with you.
If this is not forthcoming you could also speak to your local MP. In actual fact I would make contact with them anyway.

https://www.parliament.uk/get-involved/contact-your-mp/

Are you connected to a carers group. There groups are very useful and usual a mind of information.
https://www.carersuk.org/help-and-advice/get-support/local-support

Who is currently helping you.

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I am DESPERATELY concerned about pensioner carers.

I now come into this category as a rule, my son was brain damaged at birth, 41 years ago. At the beginning of the lockdown, I was told to go and get him asap without any consideration of my own situation. My health is so fragile, I am under medical instructions never to care for him again. I can manage the odd weekend, but no way could I care for him full time.

“Caring Behind Closed Doors” is an interesting and valuable report, but I am worried that some carers have been missed.

Last night, after a nightmare about my son’s situation, I was wide awake for a couple of hours. I then decided to look at the CUK 2019 State of Caring Report, thinking specifically about others in my situation.

46% of all carers care for 90+ hours a week (so employment outside the home is simply impossible for them).

Over TWO MILLION CARERS are over 65, the majority of them will be receiving their State Pension, so due to the overlapping benefits rule, they will receive NOTHING for the care they are providing.

Many, like me, will want to care for their caree, but with increased age comes increased infirmity, especially for parent carers like myself.
Many of our children have had significant cuts to their services in recent years. Government wants LA’s to reduce costs, major LA cost is Social Care. Day services have been cut, day centres closed down, respite centres closed down.
Every cut means family carers are expected to provide more and more, when their ability to care gets less and less as they too are getting older.
It can be a struggle for a couple in their seventies caring for a disabled adult child. Adult in years but child in mental state. My own son has the mental age of a 3 year old in some areas. He cannot read, write, do any maths, manage his money, or cross a busy road safely.
When both parents care together, they can leave one looking after the child while they do essential jobs, go shopping, or rest.
The ill health of one parent means that a carer has two carees, not one.
The death of a parent is dreadful. As well as grieving, there is so much more for the remaining parent.
The only time they get to themselves is when the child has the opportunity to go to some day service or respite.
Whilst in theory the carer can then rest, the reality is that they are often trying to get on and do jobs which they can only do when the caree is absent.

LOCKDOWN has had a catastrophic effect on pensioner carers.
All the services they usually received are closed.
Priority is given to those in residential care or supported living with no family to care for them.

Shopping is a nightmare, priority shopping slots are not available to these carers/carees.
Unable to leave the caree at home, they have to take them out, but anyone with LD is classed as Vulnerable!

In theory, councils are supposed to be using the Personal Budgets for these carees “flexibly”.
No one has been in touch with my about flexing my son’s budget, he’s lost 28 hours every week!

PENSIONER CARERS HAVE BEEN FORGOTTEN BY THE GOVERNMENT

It is time the government recognised that when virtually all services to support carees have been closed down, they still need carers.
The carers least able to care are pensioners, now caring 168 hours a week, without any relief whatsoever.
Their own health is being seriously affected.

Pensioners without responsibilities under lockdown can live a fairly normal life, going for walks, warm baths, reading books, watching TV etc.
Pensioner carers now have to work 24/7, without ANY opportunity for a break.

IT IS TIME TO SCRAP THE “OVERLAPPING RULE” FOR PENSIONERS
This would immediately help the 2m over 65 carers.

UNDER 65 “HEAVY END” CARERS
From the statistics available, I can’t work out how many carers under 65 are caring over 90 hours a week.
The majority would be subject to the overlapping rule as far as other benefits are concerned.
Maybe CUK has this figure available?

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BB

I dread the thought of getting older and still having these caring responsibilities.

My hubby is below pension age however he is so exhausted with our two.

I dread even more the idea of something happening to him and me being expected to look after him too.

I simply won’t do it.

I saw a news programme last night which interviewed three ordinary people who were talking about lockdown…

One said it had been a good time to focus on her mental Health, another said it was a time to slow down…urghhh made me do cross…

Is this the experience of the majority of people!

I feel like I am on another planet!

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As the mum of a brain damaged child who was very hyperactive, verging on uncontrollable, I always felt I was living in a parallel world, looking on at the life of a normal family and wishing it was me.
Our eldest was perfect in every way, we had a lovely life. I was so happy with just one child, but my husband wanted a second, and our lives changed forever.
We did our best, it wasn’t M’s fault, but caring for him was so exhausting. No children’s respite centre in our area, just a sort of overnight fostering type arrangement.
14 times M and I endured going to see someone, yes, of course they could cope with him. Various comments that I must be very inadequate to not be able to make him behave better, speak better; why did I need days off etc. etc. Some had him once, and never again. No one managed for long. After 14 fails, neither of us could cope with any more rejection.
After 2 years of no break at all, my health was in ruins, 14 lots of antibiotics to try and clear recurrent infections, and finally, glandular fever followed by Chronic Fatigue Syndrome. Even that took months to be diagnosed! Finally my GP told Social Services that he MUST go into residential care, boarding at his current school.
The toll on a family with a special needs child is huge. It’s not our fault that we drew the “short straw” so to speak. Social workers are supposed to support us to care, whatever their age. Once the child reaches 18, parents get even less help. SSD repeatedly expect us to sacrifice our own lives at the expense of the now adult child, but challenge them in any way and we are reminded about Mental Capacity, the child’s rights. What about OUR rights.
Social Services have mucked up our lives again, and again. Once I was widowed without my husband’s support, they seemed to realise I was even more vulnerable and used that to their advantage. SSD moved M to supported living, months saying it would all be wonderful, greater choice, etc. etc. Utterly untrue.
M now has a lovely flat, and I can trust the carers to a great extent, but it’s too late for my health, my dreams of what we could do together when M was finally settled.

I’m now involved with a New Forest Mencap project looking at “The Right to Retire” so that parents can see their special needs adult child find a safe permanent new home and help them settle in before the parents die.
Surely pensioner carers need MORE CARERS ALLOWANCE as caring is so much tougher the older we get, not have the existing CA taken away because of some overlapping rule???
(I also think the same applies to those of working age who are caring, but prefer to concentrate on my current age group)

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There just seems to be assumptions that you are ill, you are not an unpaid carer, you are over 60 you are not an unpaid carer.
Unpaid carers can be any age, children can be unpaid carers if their mum or dad are ill and lose their childhood.

The government just doesn’t get it, they cannot just assume and make fixed decisions, it doesn’t work like that.

I heard of proposals that if you cared for someone, relative, friend, neighbour, you get a discount off your council tax.

No what they have done is put council tax up to pay for social care.

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Just had a read through of the executive summary in the report and it pretty much sums up how I’m feeling at the moment. Having to provide extra care, stressing about whether or not we’ll be able to get a delivery slot for the weeks groceries, worrying about my health and the health of those I provide care for and basically starting to feel burnt out.

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I’m getting really annoyed that the government is chucking money about like confetti, telling us how wonderful everyone else is but not a penny for family carers unless they are on UC. What about student carers and pensioner carers caring 168 hours a week. That’s over FOUR WEEKS WORK IN ONE WEEK!!!

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