What about us? - Caring issues on TV today

On TV today they were reviewing a paper detailing something Carers UK had been involved with. I was half awake sat in bed, so I don’t have full details.
Apparently Carers UK were stressing the need for a National Care Service so that carers could work?!
The pesenters were also stressing the fact that far more women than men were being affected. I often feel that because caring is viewed as “women’s work” it’s still OK to assume that we are all sat at home knitting, by a government that has raised the pension age from 60 to 68.
The implications of poverty in later life for those of us who had no option but to stay home is huge.

Surely it would be better to offer carers the choice of work, or caring for their relatives themselves, receiving the same recompense as the “national carers”.
Having had 10 carees in total, a dubious record to have, I know that there are many situations where it is inappropriate for a complete stranger to get involved, especially when there is a crisis.
I also know how long it takes Social Services to write an accurate and complete Needs Assessment, a Personal Budget, Care Plan and then after all that, finding GOOD carers to actually care for our loved ones.
Should there be some sort of Crisis Carers Paid Leave?

It’s time to create a National Care Service for us all, says SUSIE BONIFACE
Politicians really do not want to talk about tax rises or end-of-life care. Instead they like to promise tax cuts, and pretend voters will live for ever.

Which is why our social care system runs on love. Carers UK says 600 people a day give up work to care for someone. A million care for more than one person. If you’re a woman over 50, you’re more likely to be a carer than anyone else – out of work, living on savings, and getting ill with stress.

Their commitment is worth about £132billion to the economy, according to the Carers Trust. Those aged over 80 provide an astonishing £23billion-worth of care. The Government spends just £16billion.

And since 2010 that’s been salami-sliced by cuts, which means local authorities have had to make “efficiency savings” of almost £8billion.

But we’re not dying efficiently enough. If we’re lucky we get old, might have things wrong, but live with them for years.

If you own a house, pray you don’t get dementia. It’s the most expensive care of all and anyone with more than £23,250 of assets has to cash them in. The number of us with dementia will have doubled to two million by 2050.

The amount we spend on care should be increasing. Instead, Britain treats those who need help like rubbish.

Of 5,200 requests for social care made to local authorities every day, 25 percent are turned down. Age UK thinks there are 1.5 million people with an unmet need for help with washing, dressing, or using the toilet.

A growing number of them are not the old but those who, thanks to medical advances, have survived into adulthood with complex problems, or have conditions science has only recently been able to diagnose, such as autism.

It’s not just the sick who need help. Around 2.4 million people form the “sandwich generation” of those caring for both parents and children. Worried relatives have to navigate a nightmarish system without any idea what they’re entitled to, or how to get it.

They might get the £66.15-a-week Carers’ Allowance. But they might also get taxed on it, lose other benefits or lose their job. Almost three quarters will become mentally ill, and 61 percent physically so.

But a source of shame and misery could be turned into a matter of national pride, with a National Care Service.

The care timebomb was spotted as long ago as 1999 when a Royal Commission recommended all personal care should be state-funded.

In 2010, Gordon Brown’s manifesto pledged free help with getting out of bed, washing, dressing and eating. Yet now Boris Johnson promises only to talk about it.

The economic benefits would be huge. About five million carers could work more, save more, spend more. They’d have their burden lifted, be happier and healthier.

The NHS would discharge patients sooner, freeing up beds and staff. The care service and the health service could dovetail, keeping people at home for longer. There’d be fewer falls, fewer visits to A&E. Fewer GP and ambulance call-outs.

There would be support for patients and relatives. Clear pathways to benefits and expertise. There could be more training for professional carers, and by removing the profit motive of companies that – says Manchester University – try to make a 12 percent return on every patient, they might get more than 15 minutes to spend with each one.

Perhaps most importantly, there would be respect – for those who need care, and those who give it. We could still care for our loved ones if we wish, but with help.

This is not a luxury.

A third of people aged 35 to 45 don’t own a home, and won’t have one to sell in old age. Those caring for others will need help themselves one day, and families aren’t always around – often they live many miles apart. This need will only grow.

At present, the wealthier are being overcharged while the poorer aren’t getting what they need. How much better if everyone had a basic level of dignity so they could live independently, or stay in work.

And the cost is not prohibitive. Before the election, the King’s Fund calculated it would be £6billion – or about 18 and a half miles of HS2.

A 1p rise in income tax could cover it. Politicians are just too reluctant to talk about taxes and death – no matter how inevitable both are.

Social care is unfashionable and invisible, but it’s vital. A National Care Service would be decent, humane, and provide huge social capital.

Thanks for highlighting it all. Its all very scary. More and more people are going to need help, because they will be I’ll with caring with no breaks, no money for even basics.

This is scary. Thanks BB!

I agree. with CUK that if carers want to work thy should be supported to do so.
However where this is is impossible due to lack of appropriate care or special circumstances, then they should be paid at least the minimum wage, not just for 35 hours, but for the Full hours they are caring!

so - 20 years ago I was offered a £30,000+job that I would have loved, it couldn’t do it as there WS no one to look after my son. That was a fact, established after an Ombudsman’s investigation. Instead, I had just CA of about £50. Now a pensioner,I get nothing. He has been home for 48 hours this weekend. Nothing?!

Thing is where all the staff going to come from, in my area shortage of care staff as the house prices are so expensive so carers travel from towns miles away.
So suitable cheap housing for all the carers, minimum house price is around £250,000 too expensive for minimum wage.

Even if you are rich and willing to pay for lots of care, there just aren’t enough carers.

And to assess all these people thousands more social workers, thousands more O.T.s to assess what equipment needed.

And then suitable housing, many of my carees live in normal unsuitable housing, need specalist housing, ground floor flats, bungalows with wide door ways for wheelchairs with bigger bathrooms and kitchens.

And the equipment, specialist wheelchairs, beds, hoists, grab rails toilet frames.

The NHS , more doctors more nurses, district nurses and community teams.

To provide more and better care for the people with not enough care, emergency care teams, night care.
then to provide care for an extra 1.5 million, its a massive undertaking.

My carees can’t go out as there is no one to help them, basics like shopping, go for a meal with friends, help with the toilet , so again providing more care, it all costs money.

Holidays and breaks for carees, giving a holiday to a caree, gives a break to a carer, but again specialist accommodation, carers to go with them on holiday.

All services have been cut as they just cost too much.

And this isn’t just about care, many carees are mentally ill, depressed anxious and then theres autism and learning difficulties, again more treatment support, more therapists, more specialist mental health staff.

And these carers going back to work, many are ill, worn out from years of caring, they cannot just jump into a job tomorrow, some haven’t worked for 20 or 30 years, out of date skills.
Been night caring for years, their routines all messed up, to suddenly go back to work scary and probably not possible.
And some carers can’t work at all but have little choice but to care, so its not about getting back to work, treatment, help and support with their often complex conditions.

So £6 billion, more like £60 billion

This is a national crisis. My brother has a visible physical disability. Yet even to get a disabled parking permit costs us money. I paid £10 last year out of my own hard earned money to the DWP to cover the fees. Why did I do that? I will not make that mistake again ever. And filling out the application form was painful.

It was a lot like completing the application form for dla seriously. I hated it. But it had to be done. Something needs to happen. I was discussing all of this with a friend today on the phone. I think that they should at least edit the forms to make them easier and shorter to complete. We have used some of our family savings to fund holidays. And his wheelchair cost a lot. I really resent that.

What about learning new skills? I have had to dramatically reduce my hours at work this year.


I don’t understand why you are paying for essential equipment like a wheelchair for your brother.
As I understand it, his parents are still alive and working. Is there a formal arrangement between you for his care, that has involved Social Services?
Is there a formal arrangement between you and his parents?
Is your brother in receipt of DLA now?
You should have been told about The Family Fund, and there are other sources of funding available too.

We did not find out about the family fund until last week. I have spoken with my mom but she lives in the States. My plan is to apply to the fund tomorrow to see if they can cover our planned upcoming family trip to Wales this summer. I have only had my brother since early April of 2018.
Before that he lived with my parents. Yes thankfully after numerous emails sent by me and several phone calls on my behalf to them by our amazing social worker. I sent off the application form in mid October. I got a copy from our local library. He was almost three when I applied for the first time. We had a decision letter yesterday afternoon. What other sources of funding are available?

Are you fostering your brother? It’s really important that you have a formal arrangement for his care.
If you live in a flat, his disability should give you priority on the housing list.
Ther is the Florence Nightingale Aid in Sickness Fund, which pays for various things that the state will not. Google them. The name I’ve given may not be exactly right, but Google should find it for you. Now he has DLA, you can claim CA as long as your income is under about £120 after deductions etc.

Can anyone tell me where I can see ‘what about us’. Its something that’s angered me for a long time looking after my mum full time and financing most of her personal care because social services have reduced her money down to virtually nothing. I remortgaged my own house so I could raise the money to pay someone to come in and shower my mum. I am living off £50 a week and caring full time 24 hours a day, 7 days a week no breaks and yet the government should be paying me. I am happy to do what I do but we all have to live right and it seems all wrong to me that the person who gives up their work and takes on full time care doesn’t get anything and the visiting carer gets paid. Its time the family were employed and paid to look after their loved ones and I’d like to watch this program if possible Many thanks


Can I ask a few questions about mum and her care?
Own or rent her house?
Over £23,000 in savings (Yes/No)?
Do you have Power of Attorney?

Hi Bowlingbun, I was wondering if anyone has seen any info re the UK primary care transformation plan, which is becoming more widespread in Scotland now, with major changes taking place across all sectors. Yet I don’t see much on TV or media about the changes which will impact on all of us, many of which seem in experimental stages. While people with mild to moderate health problems may benefit in some ways, I am left wondering , after my recent awful experiences with elderly parent, how people with frailty who are not coping at home and older Carer’s or sandwich generation Carer’s Will fair in these reforms. What contingency plans will be available for people who are clearly struggling to continue to manage at home, (or not identified until crisis)yet can’t be admitted to hospital or convalescence facility due to lack of places available and funding cut backs ? It seems that rapid response teams and advanced nurse practitioners will be doing home visits instead of GPs and trying to prevent people from being admitted to hospital. On one hand most people want to stay at home, but in reality people may not get the care they need and dying at home without a full back up of care severely impacts on Caree and Carer’s yet again. I think that the role of a carer is sadly grossly underestimated and not everyone in older age can be cared for at home. For example in advancing dementia plus mobility issues which are huge stressors for Carer’s in terms of ongoing safety issues at home. Although massively upsetting I finally accept that my mum is better in a care home, yet it has taken the best part of 10 months to even start to think about rebuilding my life and the stress is ongoing. However I know I would have ended up very unwell and unable to continue caring if I didn’t instigate care home after many difficult years of caring. There is still a price to pay in terms of financial cost, but health care needs to come first. As many Carer’s have said on the forum, if Carer’s stop providing care, then the current system would be even less able to cope. I think we need specialist frailty units or more good old fashioned statutory community hospitals for convalescence/ respite care as well as more affordable care home places. How can we have personalisation and choice if the resources aren’t there?

Are YOU paying for mum’s care???

Hi, Bowlingbun, No, I don’t pay towards care home directly. It’s all the indirect things like extra travel and we shared some household expenses, as we lived together, which is difficult now as I only work part time. However, mum pays a significant amount towards her fees, which I know is standard practise. I still take her out for lunch a couple of times a week, and am trying to focus on appreciating our time together. Guess I have to try to make the best of things now.

Thanks. Apology for the delayed response.

I have never heard of them. My income is very low. Who do I talk to? I’m going to email them on Monday to ask for more details. And yes we do have increased priority on local housing lists. I have checked. What sort of things will they pay for? Is there a website or not?

Thara, long ago I started a charity for anyone who had a special needs child. It often took years for a diagnosis and during that time, very little help was available. We had a lot of fun, the charity is still going strong 30 years later, and I’m still in touch with many of the mums I met then.

One of “my” mums had a child with Down’s Syndrome who needed a special piece of equipment not available on the NHS or via Social Services. I found out about this fund, and referred the mum concerned. Someone else has to make the referral, a doctor, social worker, or similar.

They provided what was needed, and wrote to me afterwards, thanking me for the referral and asking if I knew anyone else who needed help!!!

That was all 30 years ago, but I never forgot their kindness. To start with, Google them and then talk to them.

What is the name of the charity?