Why does it seem that carers are being totally ignored?

Specific disabilities and conditions
1

So, we’re now weeks into COVID-19, the government has announced a lot for supporting people, etc… but (and some of this is my personal situation)

I’m a full-time carer for a disabled family member, I live on Income Support and Carers Allowance… because of their vulnerability (and to a lesser extent, mine) we’re isolating together… meaning my caring role has gone from hours a day, to 24x7 … not a problem, luckily we get along… but, I’m now doing more caring than ever.

If I were unemployed, or in UC and caring, I’d be seeing an extra £1000 this year… in Income support, it appears I wont;

If I had a part-time job to supplement my UC/Income Support … I wouldn’t be eligible to claim for furlough - in my case, I didn’t, but I could be out of pocked £4-500/mo because of it… on top of increased caring

So, financially, it’s pretty grim as a carer… fine.

The government has announced it needed 500,000 volunteers to help the vulnerable/elderly/etc… but, because I am self isolating along with the person I care for, she is considered to not need any external support … sounds good, but digging deeper… I’m self isolating to ensure I can provide care with as little social contact as possible, I have to shop / etc… exactly the same as everyone else however, because neither of us can access the care that the government recommends for those self isolating… and it appears to be a lottery… I have a friend with COPD & Heart condition… he automatically got medication delivered at the moment, even though his wife and the rest of the household aren’t in a vulnerable group… in my case, I had to go to the doctors surgery, pick up a 3 month prescription, take it to the pharmacy and will get a call monthly when it’s ready to collect…

Since this began, we’ve managed to get a delivery slot with Ocado (so expensive), a £35 box from Morrisons (branded products, would last a single person 3-4 days probably?), and a click and collect from Morrisons (which in fairness, was fantastic) … Asked the Ocado driver how to register as vulnerable for priorty … didn’t know said call the # on the invoice (there wasn’t one), asked the person doing click + collect from Morrisons … not sure… sent an email to Morrisons via their site… reply was they are still waiting for a list from the UK Govt for whom to consider vulnerable… these slots I’ve gotten are all with almost daily checking across ASDA / Tesco / Morrisons / Ocado / Sainsbury’s

The new Carers’ card should alleviate some of this surely? … I mean, I’m a carer, if I can identify myself as such, then right? … nope… best I can hope for is a local scheme card from my local carers association…, or to take a copy of my DWP Carers’ allowance letter and my drivers license with me, and spend 10 minutes explaining.

Someone please explain to me, why, any of us are actually carers… I mean, I could work full-time, earn a decent(ish) wage doing so… and let the local council foot the care bill… not worry about self isolating… and still do the 50% that the council wouldn’t do as part of their ‘comprehensive care plan’ they’d provide.

I certainly don’t feel what I do makes any sense any more… All carers have spent years being ignored by the government, providing an essential service that would cost I suspect billions if we all just refused and put the burden on social services…

Now during a national crisis, where the government has identified the most vulnerable, it has in every measure it has taken, completely and utterly failed to consider how those who are providing the most comprehensive in-home care to people - those who spend 35+ hours/week providing care for someone - are being entirely ignored by the systems in place.

2

It’s because you are able to access some benefits. So that’s the end of the Governments responsibility to you.

Your post fit’s well on another long running post.

Perhaps the Moderators know the one I am referring too.

3

Shayne

Agree. We are all feeling this.

I have already told social worker I am out of this caring when pandemic over…I have cited lack of breaks, support etc as the reason.

I’ve told my hubby too.

I have been feeling this for a while.

4

Why does it seem Carers are being ignored?

Pretty simple I think. The Gvt, especially Johnsons crew and the past 10 year cabal, know that we would never willingly? up sticks and give up Caring for our Loved Ones.

The Gvt takes advantage of this and know, they can direct little or no resources our way and we to them, we are a very easy touch.

It’s a crying shame that it is this way, though in a way we are victims of our own success & love for others.

I hope it does change in the near future given what’s occurring at the moment. However I would not hold your breath.

5

It is a shame …

I heard last night on TV that the government expect to spend 400 billion due to pandemic.

Carers save the government 132 billion a year I think I have read??

No wonder the government ignore us…there is no way they would want to address the financial eniquality of carers.

6

I think the saving to The Gvt/Nhs, is in the order of 130 odd billion, if perhaps a tad on the conservative side.

Can you imagine the difference if a fraction of that was spent on Social Care/Care in the community/Carers in care homes and yes, Carers in the home setting, Us, to help ourselves, to help those we care fore?

But no, this Gvt in particular (previous Gvts are guilty to a lesser extent) until the Pandemic struck, were hell bent on starving Health services across the board.

Things have had to change on finances for The NHS (ie writing off debt) and the firefighting of the Virus. Though even in the midst of the Virus, un paided Carers don’t even feature on the Gvts Radar, just the odd pat on the back.

I note with interest the slightly differing approach of The Welsh & Scottish Gvts.
Yes, they are hugely constrained by what’s doled out by Westminster, though the Welsh are on the verge of handing out cash, one off bonuses to those in the paid Carers setting & looking at what to do for un paid Carers. In Scotland they are looking at replicating what’s occurring in Wales, plus as you may know, they have a twice yearly supplement to CA.

Please don’t misinterpret me, it’s not all about money, though by doing as the devolved administrations have done, it shows in actuality, they actually care and value un paid Carers.

Meanwhile here, it’s just the same old story. Well done, carry on, we pay tribute to you, have a pat on the back, perhaps even a badge. It’s pathetic, patronising and sometimes dis heartening. We deserve better, however we are stuck with Johnson and crew, Ho Hum.

7

Unpaid carers continue to be totally invisible.
We need their position really pushed forward now.
How many students and pensioners are there who don’t EVER qualify for a penny extra.
I know many pensioners who still have someone with learning difficulties living at home still, not what they want, but there is no alternative placement for the child.
The parents are really struggling, desperately need the breaks day services give them to get some peace and quiet.
Caring for an adult physically in the prime of life, larger and stronger than them, but with a preschool mental age, is tough, very tough. They can just about manage with day services help, but with no day service, they get no break at all.
All my friends in this position have developed serious health conditions, including strokes and heart attacks. One can’t drive any more due to eye deterioration.

8

I see that unpaid carers are now classed as essential workers and can access Covid tests …

Essential workers yet no pay…its a farce

9

Only if you live in England it would seem. I’m currently trying to find out if the Welsh government will follow suit and add unpaid carers to their list of key workers.

10

Yes, it’s right! ‘informal carers’ are allowed to book a test…if they are showing symptoms. Proving we must be considered essential workers but remain without a wage, for our working duties and of course, this includes assisting recognised paid staff to do a job, more than a lot, aren’t doing either present or past.
It doesn’t just seem we are being ignored…it’s more of a fact than anything else.

11

True we the Carers are being ignored totally.
I am a Full Time 24/7 Carer for a parent with Tracheostomy and now with Pallative Care. HOSPICE AT HOME, as mom does NOT want to go to hospital anymore.

Due to COVID -19 I am going out shopping, running errands with no assistance. And having to leave mom home on her own , considering she is Pallative Care Patent.

I have Autoimmune Disease which are non curable.

I can’t get shopping done online any more due to this crisis so I physically have to go out myself.

Having to constantly worry if I am going to see my mother in good state.

I have NOT received one of those letters.

So, yes we are ignored.

Anila G.

12

Anila, the doctor should have arranged NHS Continuing Healthcare for you, free help and support at home, as needed. Ring the doctor asap and ask them to make a Fast Track Application for you. Support should be arranged in 48 hours.
Is mum getting Attendance Allowance, or PIP?
Do you have a hospital bed for mum to make nursing her easier - the GP should sort this out too.

13

Anila, this must be very distressing. I do hope that your mother is getting all the necessary equipment, not only hospital bed but also air mattress, slide sheets, hoist or sit to stand aid, commode and chair or recliner with pressure relieving cushion, as appropriate for her needs. Those are some of the aids that my mother received and were supplied through the occupational therapist and district nurses.

14

Anila

You have enough on your plate without having to worry about shopping.

Have you checked Facebook to see if there is a Covid Mutual Aid group in your area that can help with shopping.

They don’t charge for their time a volunteer does the shopping for you.

Also check out with your local authority as well.

There’s no way you should be having to go to the shops.

15

It’s shocking how many stories I’ve heard or read from people who should have received a shielding letter but haven’t. I’m not sure how it works in England, but here in Wales if you believe you should have received a letter you’re being advised to contact to your GP and discuss the matter with them. I’m truly shocked that somebody with Autoimmune Disease hasn’t received a letter.

16

As we heard from Dean, his doctor classified him as "moderately highly vulnerable ". Are they making up categories to rule people out? Typical.

17

Seems that Scotland is the only nation in the UK that is so far prepared to recognise the extra pressure carers are under at the moment as they’re preparing to give all carers in Scotland who are claiming carers allowance a supplement payment to help cover any extra costs they may have incurred during the lockdown:

The Scottish Government will pay an extra £19.2 million to unpaid carers next month in a bid to support them through the Covid-19 crisis – acknowledging that they are “doing even more right now”.

The new legislation will see 83,000 people who care for someone else for 35 hours or more a week and who receive Carer’s Allowance get an extra £230.10 in June.

Shirley-Anne Somerville, Cabinet Secretary for Social Security and Older People, said the Carer’s Allowance Supplement was being introduced “to recognise the important contribution unpaid carers play in our society”.

She said: “They provide vital support to family, friends and neighbours. Our collective efforts to slow the spread of coronavirus will see many of these carers experiencing additional pressures, particularly financial, right now.

“The payment will benefit carers who are on low incomes and already have some of the most intense caring roles, providing at least 35 hours of unpaid care weekly to a disabled child or adult in receipt of higher level disability benefits.

“This additional payment would be an acknowledgement to carers that we know that they are doing even more right now, and we thank you.”

Unpaid carers are under extra pressure, providing more care and not getting breaks

The Carer’s Allowance is paid to people who care for people with disabilites or other health issues full-time with earnings of £128 or less per week (after tax, National Insurance and expenses). It can be claimed by people providing remote care during the Covid-19 emergency too.

The supplement is the only payment of its kind in the UK. In the rest of the UK Carer’s Allowance is the lowest-paid benefit at £67.25 a week, with campaigners calling for it to be increased by at least £8.85 to match Scotland.

The payment due next month, a total of £460.20 including the extra cash injection from the proposed supplement, will go to people who were receiving Carer’s Allowance in Scotland on April 13 earlier this year.

Overall carers will get an extra £690.30 on top of the standard Carer’s Allowance this year.

Helen Walker, chief executive of Carers UK said: “This is an important act of acknowledgement for Scotland’s unpaid carers – the majority of whom have been providing even more care for their older, disabled or seriously ill loved ones during the pandemic. Many unpaid carers in Scotland will appreciate being recognised and this extra money will help them meet some of the extra costs they are facing during the outbreak.

“Now, the UK Government needs to do its part to ensure the rest of the UK’s unpaid carers receiving Carer’s Allowance – and providing upwards of 35 hours of care a week – also receive a coronavirus supplement. This is imperative to show carers that the Government recognises the additional financial costs that they are facing at this time.

“Caring Behind Closed Doors, our research into carers’ experiences during lockdown, showed 81 per cent of unpaid carers had extra financial costs as a result of the crisis. At the same time, unpaid carers are under extra pressure, providing more care and not getting breaks.”

18

Definitely here in NI we are being ignored also. My husband and I care for our two teenage children with ASD, my daughter also has significant mh issues. We are both working from home (part-time for me and full-time for my husband). Juggling it all with school being closed has been pretty exhausting. To add insult to injury I lost my Carers allowance when I returned to work, even though I only work 12 hours a week (as I was slightly over the threshold). We have had absolutely no support from the gov. My daughters mh care has now been replaced with a quick phone call and therapy has been “postponed until further notice”.

19

Dianne

I can can understand how you feel I look after my two boys one with autism and other needs and the other with a learning disability.

Since everything closed down my workload has gone up significantly.

That’s a shame you have lost your Carers Allowance I thought I read somewhere that if you earn over the threshold you can still get carers if you put a certain amount in a pension…because I do not know if that is factually correct could it be worth checking things out with carers uk helpline.

If either of your children are over 18 have you applied for UC, for them?

20

Anila

Have you spoken with her trach nurse or not? There should be at least one phone number on a letter for you to call. Alternatively you could try emailing her ear nose and throat doctor for help. Ask them about qualifying for the NHS continuing healthcare scheme and request a fast track application in case.
In terms of claiming state benefits, is she on pip and esa? They are the two most important ones to apply for. Since she has a open tracheotomy, she should be eligible for the enhanced rate of both. Citizens Advice can help you with this. Give them a call asking for a advisor, take a look at their website or email them.