Retirement on hold for unpaid carers

Most of us dream of a retirement when we can put our feet up, live stress free and take up that activity or hobby we had never before had time to do.

For an ever increasing number of people, however, this dream falls flat when someone close to them has a long term illness, disability or is struggling with drugs and/or alcohol use.

Today Carers Trust launched a new report – Retirement on hold (PDF, 406KB) – supporting older carers. The report sets out the issues older carers told us they faced, and makes recommendations to ensure older carers get the vital support they need now and in the future.

Carers Trust are calling on local and central government to ensure the growing numbers of older carers are well supported and are considered a priority when planning services for the future; after all they have given up their well-earned retirement and are increasingly at the sharp end of the social care funding gap.

The growing population of older carers

It is widely recognised that we have an ageing population, people are living longer and often with multiple long term health conditions.

Alongside the growing numbers of older people with poor health, we have a growing population of older carers who are looking after them. The number of carers aged 85 and over grew by 128% in the last decade (Carers UK and Age UK, 2015).

As we get older we feel increasingly tired, and may develop our own age-related health problems.

Under normal circumstances we would slow down, take a rest in the afternoon, sleep late and generally take it easy. This is not possible for the growing numbers of older carers who say they are exhausted.

“When I was at work and was sick I could take time off and rest. That’s not possible now, I have to haul myself out of bed to take care of my mum.”

“I have worked all my life, but this is the hardest job I have done. I never dreamt I would be doing these things for my wife. I want to do it but it I must admit it was a steep learning curve, I am 90 now and have had to learn new skills to care.”

Campaigning for older carers

Over the past year, Carers Trust has been working to increase awareness of the issues faced by older carers, and campaigning to ask for a better deal for older carers when it comes to offering them vital support.

Carers Trust has run two successful actions as part of the campaign. The first action saw carers and supporters contact over 300 local councillors to ask for improved coordination of care services, to prevent them having to attend multiple appointments and make multiple phone calls.

In the second action, nearly 250 carers and supporters contacted their local Clinical Commissioning Group and Health and Wellbeing Board to ask for a better deal when it comes to carers’ health.

We must prioritise carers’ health

It is well recognised that caring is a risk factor when it comes to our own health. We must prioritise carers’ health, make it easier for them to take time out to attend appointments and keep up activities.

After all, if a carer is forced to stop caring because they are unwell, the person they care for is likely to need crisis or unplanned care, costing the health and social care systems time and money that could have been better used for prevention.

Blog by Louise Marks, Dementia Policy and Development Officer, Carers Trust


February 7, 2017 Posted by | campaigning, Health, Isolation, Older carers, Social Care | 5 Comments

Ask the Chancellor to invest in care workers!

No time to read to the end? Take our quick action to deliver a Living Wage for care workers!

Making sure that care workers are paid a decent wage for the invaluable work they do is a vital cause.

Only this year research from the Resolution Foundation discovered that more than 1 in 10 care workers are being paid below the minimum wage of £6.50 per hour.

This is hardly a reflection of the incredible and essential work that they do. They deserve much, much better.

That is why Carers Trust welcomed the announcement made by the Chancellor in his recent budget that, as of April 2016, all care workers will be paid a new compulsory Living Wage of £7.20 per hour. Continue reading

October 2, 2015 Posted by | Funding, Social Care | Leave a comment

Government: this November, support unpaid carers

Last week the Chief Inspector of Adult Social Care at the CQC, Andrea Sutcliffe, laid bare the impact that the government’s £4.6bn cut to social care is having on care workers.

She warned that workers are being put under immense “stress and strain”, no longer able to provide the quality support that they aspire to.

Sadly Andrea’s words have only added to a growing pile of evidence demonstrating that cuts to social care investment are pulling the ground from under the feet of our social care providers: a King’s Fund report recently found that in the last five years, the number of people able to access social care services has fallen by 25%. Continue reading

August 11, 2015 Posted by | Social Care | 2 Comments

Can we Make it Real for carers in self-directed support?

PRTC-178We have long since moved to the position where it’s regarded as unacceptable that both people with care needs and carers, have to accept one-size-fits-all services which take no account of how they wish to live their lives. This applies as much to people who fund their own care, as it does to the (sadly ever diminishing proportion of) people who have support funded for them by their local authority.

A year ago, a document called Making it Real was produced to show what this means, and its principles can’t be argued with.

Improving traditional approaches

Traditional service-led approaches to meeting needs in social care meant that people have not always received the right kind of help for the right issues in the right way, and at the right time.

Making it Real is about what can help achieve this, from the perspective of people right at the sharp end using the services.

However, although the original document was relevant to carers, it was really focused on people with care needs. There was a real risk that, again, carers would be an added extra that didn’t really fit with the main programme, or worse still, were taken for granted and invisible.

So with Think Local Act Personal — the national organisations responsible for Making it Real — and the Association of Directors of Adult Social Services, Carers Trust worked with carers to focus on what would “make this real” for them.

What carers want

There were three workshops with carers with Care for the Carers in East Sussex, with Lewisham Carers Centre, and with Durham and Chester le Street Carers Support. The passion and positive determination from the carers involved to have their say was clear.

Amongst the things carers said were:

  • I need the right information at the right time, and I shouldn’t have to fight for it
  • I need face to face to support, not just answer phones or websites
  • Confidentiality shouldn’t be used as a barrier to communication with me
  • I need the space to be someone other than a carer and pursue my own interests
  • I need good planning and support through the maze of services
  • I need care workers who are reliable, knowledgeable and trustworthyI need to be able to report poor care without being afraid of the repercussions

If these were done, many carers would feel better supported, less stressed and there would be better outcomes for everyone.

Progress will take time

All organisations providing care or supporting people with care need to take time to  talk to carers, honestly and openly, about how they are Making it real for them. It’s not difficult to do — the Making it Real website gives a checklist, which can be used to start the discussion and identify some priorities. Organisations which work through this process can get a kite mark to show they’re taking this seriously.

Nobody is expecting every area of every service to be transformed overnight but we all need to make a start to ensure that the support we provide meets carers’ needs in the right way.

Carers deserve to have their needs met in a manner  which treats them as the valued and diverse individuals they are.

May 31, 2013 Posted by | Social Care | , | 1 Comment

Making it real for carers – Durham carers’ experiences of personalisation

elderly couple holding hands

A while back, a document called Making it Real was published. Carers as well as people who use  services were involved in producing it, but for me,  I feel we need to put this into the context of what needs to be done to support carers themselves to make sure they have choice and control too. So last week I was with Durham County Carers Support and a group of amazing carers to talk about personalisation and what Making it Real means for them.

Personalisation – for people who get support from their local authority in England –can mean being able to choose the kind of care you want, when you want it, and provided by the right person. Carers said it can work – for example the carer who has had a service from Crossroads Care for years but their contract came to an end locally, so she got a direct payment to keep employing the same worker. It was brilliant to hear that so many people had positive experiences of Crossroads Care, as well as Durham County Carers.

However, it wasn’t the whole story. Most carers who had a direct payment said the paperwork involved had been  fearsome.  Some said it has taken six months or more for their direct payment to be sorted out, leaving them in limbo all that time. Time delays may not mean much for professionals, but they leave carers stranded. And a number of carers said they just hadn’t been offered any choice at all, sometimes because there simply isn’t  anything to choose from.

Those carers who seemed to have had the worse time were those who had been transferred from a local authority budget onto NHS Continuing Care. This is supposed to make life easier – it means not having  to pay for care, apart from anything else. But the stories they told were awful. One told of how she had a package which was working well , but on transfer to NHS Continuing Care all that stopped.  They could no longer have any choice at all – they just had to take what they were offered, with a huge delay in getting things in place. The social care agencies they used to work with would no longer even give advice and just referred back to the NHS. Instead of helping, it’s made things much worse.

What came out loud and clear was the importance  of professionals really listening and acting on what they have heard. Carers were sick of being palmed off and excluded.

Carers also said they need properly trained and qualified care workers – ones they can depend on. They need to be able to provide the expertise and continuity that carers need to be reassured that the person they care for is safe.

I don’t think these things are much to ask for. Thank you to everyone from Durham for an excellent day last week. You really showed what would make it a bit more real for you.

November 2, 2012 Posted by | Health, Individual Budgets, Social Care | , , | 1 Comment

Did they really say that?

Typically at this time of year, not much is happening policy-wise with Parliament in recess. This seems even more the case this year as everyone seems to have vacated London for the duration.

With this time to take stock I’ve been thinking about the top things politicians have said to me in the last two years whilst I’ve worked here which have left me aghast.  We think we’ve got the message across, and then I’m left with my mouth hanging open in a meeting  thinking – “Did they really say that?”

Here are my top five jaw droppers .  You can rest assured, all of these got suitably robust responses, if appropriately polite for the circumstances.

1.       Carers have a duty to look after their relatives. If they don’t want to do it, that’s just tough.

I’m afraid I had to take issue. Whilst many carers may well feel it’s their duty,  actually we  are free individuals who should be able to make our own choices. No-one is saying the state should interfere in families’ business, but it should provide support to help families achieve the best outcomes for all. Although sadly many people do feel trapped in a caring role, this isn’t how it should be.

2.       Young carers, aren’t they just children who do some chores?

This particular meeting  started off inauspiciously with this perplexing statement, and ended up with us conducting  a hasty carer awareness  session, which resulted in the MP actually understanding something about the issue and speaking positively about young carers later in the House of Commons. So despite the difficult start, a real result! Nice to know that some days we make a difference.

3.       People with disabilities don’t need DLA unless they’re the most severely disabled  people.

Somehow there’s an idea amongst some MPs that we should spend all the benefits money on the people with the most severe levels of need. The thing is, that living with a  disability  – pretty much any disability – costs more.  If we don’t spend a bit of money on people with moderate levels of need, they get worse and worse , and their lives get more and more miserable until they end up being the people in most need.  We all know about the need for prevention  and that this saves money in the long run- why can’t they see it?

4.       Carers don’t actually live on Carers Allowance.

If I had a sticky bun for every time someone in a decision making role told me that no-one actually lives on Carers Allowance, like it’s just a bit of pin money, then I could open a bakers shop. So again and again we say – Carers Allowance may not be a king’s ransom but it’s desperately needed income which helps  families survive.  We need Carers Allowance to work better for carers and to actually be a decent amount of money. That’s a key thing we need to get the Government to sort out, once and for all.

5.       We don’t actually need to put money into supporting carers – they’d do it anyway.

This is perhaps the saddest things I hear – and it’s hard because I know from the people I meet that thousands of carers do go on, year after year, supporting people even though their own health deteriorates to the point of collapse. The thought that it’s not worth putting a bit of money in to help people care for longer, with a bit of quality  of life for themselves, just makes my blood boil.

So, those are my jaw droppers – what are yours?  Share the worst ones!

August 16, 2012 Posted by | Carer's Allowance, Carers Strategy, Law, Party Conferences, Social Care, Young carers | , , | 7 Comments

Carers high on the agenda for the Care and Support Bill, but this still won’t stop people’s care needs getting worse

On Wednesday,  the biggest unkept secrets of the year finally emerged – the long awaited White Paper and draft Bill on social care.

Let’s start on the positive side. The one thing you can say is that carers have well and truly arrived. From a  quick count, carers get more than 100 mentions in the White Paper, and more than 200 in the draft Bill itself. This may not mean that the proposals solve all carers problems, of course,  but no-one could say that carers’ issues have been overlooked this time.

However, I’m concerned about whether the proposals overall  will push us towards  a system  which meets needs more effectively, or not. With pressure on services, only people with the most serious needs ever get anything. This means that people who start off with low level needs get worse and worse until they reach crisis point. This is not a good way to run a care system.

So where is the prevention approach in social care? Well, the Government would argue that the support for carers, and the duty to provide information they’re introducing are preventative . I agree we need both of these.

Provision of information is crucial but it’s no good just bunging something on a website or giving someone a leaflet. People need different information at different times and out experience is that nothing beats local face to face information and advice. I hope local authorities  ill take this duty seriously and back it up with the resources needed to do it properly .

The proposals should give carers enhanced rights to assessment, and local authorities will have a duty to meet assessed needs  although they  will be able to charge for these if you have more assets than the limit allowed, which takes the shine off it somewhat. It seems a bit of a cheek to have a carer’s assessment, be told you need a break, and then be told that you’re going to have to pay for it yourself. If it were me, I would be thinking, so what was the point of that then?

Information and advice and support for carers, crucial as they are, can only be part of the prevention agenda. In a climate where the basic community based services which people use to prevent isolation and get support – lunch clubs, libraries, social groups – are closing their doors, then it’s hard to see how  this gap will be plugged.  I don’t see this legislation meeting the preventative social care needs of vulnerable people within our communities, meaning a continuation of the intolerable position where you have to be in dire straits before any support is available at all, unless you can pay for it of course.

Also, the elephant in the room is that  there’s no resolution of the money issue. You’ll perhaps have heard us banging on about the Dilnot proposals – the cap on the amount people will have to pay for care, and so on. Well, the Government has broadly accepted the principles  –  definitely a step forward, but it falls short of actually grabbing the bull by the horns and doing it. Wait, it says, until the next Spending Review and we’ll deal with it then. That’s all we’ve heard for years – wait, wait wait. Well, we’re still waiting.

July 13, 2012 Posted by | Carers Strategy, Social Care | , , | Leave a comment

It’s not surprising that carers are worried about the future

The White Paper on Social Care is coming “very soon” and promises to strengthen carers’ rights but appearance of a funding solution to the impending crisis in adult social care looks increasingly unlikely. Despite the ‘Quad’ (the regular meeting of the Prime Minister, Deputy Prime Minister, Chancellor of the Exchequer and Chief Secretary to the Treasury that discusses important coalition issues) discussions last week over the government’s position on Dilnot and funding reform, hopes of even having sight of a progress report on social care funding are fading fast. It looks like there may not be any progress on addressing the funding crisis in adult social care until the autumn at the earliest.

It is in this expectant and what is feeling like an increasingly hopeless atmosphere that the Local Government Association has issued its stark warning about social care funding – either we reform the system now or fundamental change will be needed to the way local services are funded and organised and or to statutory and citizen expectations of what councils provide.

The LGA projections show that even if social care demand is met (and this will still only be services for a minority of people) there will be a likely funding gap of £16.5 billion a year by 2019/20. What this means is that there will be hardly any money left at all for all other council services like libraries, housing, parks, playgrounds, street lights, community centres, leisure centres to a name a few.

The projections are based on the fact that central government funding for local government has already been cut from 29.7bn 2010/11 to £24.2bn in 2014/15 and that there will be further reduction to around £17.6bn by 2020 in line with Departmental Expenditure Limits set out in the Budget 2012.

The LGA projections appear to leave local government with two choices. Either maintain spending on social care and reduce spending in other areas which will drastically impact our communities or distribute spending across social care and other services. This would leave more vulnerable people with care and support needs with inadequate services or without any services at all, which is why the LGA have put it quite simply – “Without money and reform, there is no solution”.

This is really bad news for many carers who are already battling on a daily basis to get the care and support that they and their loved ones need. At the many events during Carers Week, it was made clear to me that many carers are incredibly worried about the future and how they will cope with the costs of care. They experience a lot of anxiety about their own ability to fund the care their loved ones needs and about financial restraints on the services they rely on. One carer explained “the day centre is very important for my son but also for me – it really is the best respite for a carer”. Someone else commented that the centre offering many of the activities that she and her husband take part in is closing. She’s not sure whether there will be anywhere else to go.

Carers Week was all about the fact that carers have poor health outcomes. But doesn’t it seem odd that despite the Government making it clear that they think carers should get breaks and that their health should not suffer, carers are actually experiencing high levels of stress and anxiety about funding for the services that their loved ones need?
Contradiction is at the heart of Government’s policy making on adult social care – they are willing to overhaul the complex and messy legal framework and willing to look at strengthening carers’ rights to assessment and support, but currently there is no way of funding the increase in demand for care and support. This will make it extremely difficult to fulfil carers’ rights. Of course, we welcome the Government’s “determination” to do more for carers but the legal reforms alone will not result in access to high quality care and support.

Carers know only too well that, without a funding solution for adult social care, they will continue to worry about the future because they will be left responsible for meeting the care needs of their family member of friend. We know that many of those being cared for are receiving the bare minimum from local services. This increases carers’ responsibility which is why they constantly tell us what they really need is more support for the person they care for. If the Government is serious about making support for carers a reality then it’s time to listen to them and have that difficult conversation about how we’re really going to pay for adult social care.

July 5, 2012 Posted by | Social Care | , , , , | 1 Comment

So who’s really going to have to pay for social care?

Yesterday saw another report taking a long hard look at the state of social care in England – this time the Nuffield Trust in Reforming social care: options for funding. The hard truth is this: we all know social care needs more money and none of us want to give it.  Those of us involved in the care system already, one way or another,  generally think it should be paid for by taxpayers. Like  the NHS, we want it to be there when we need it – free at the point of use. That sounds great and I’ll continue to tell anyone who’ll listen that it’s what people want, but if I’m being honest with you, it just isn’t going to happen.

There is no appetite within government for putting taxes up – even under Labour in the good times in England, free care was never really up for discussion ( unlike our Scottish friends). With a  Conservative-led administration, and in these austere times, we just have to face facts that it’s not on the table.

So what are the other options? The Nuffield Trust have come up with a few. As you might know  Andrew Dilnot suggested a cap of £35k on the amount an individual might have to pay for their care once they reach “substantial” level of need (this would be lower for people who have care needs earlier on in life. Well maybe we could increase this, but would this reduce the effectiveness of the whole proposal?  We want people to think it’s a manageable amount to plan for so they don’t leave care in their older years completely up to chance.

Other options suggested are redirecting the NHS underspend to care . I’m all for that, but I find it hard to believe the NHS  has all that spare cash sloshing around. We found it hard enough to get them to tell us about the £100m  they were supposed to be spending on support for carers last year. And you know what happens when you discover you might have to give cash back if it’s not spent – you suddenly find a hundred useful things to do with it, so that suddenly – surprise!  – the cash is gone.

The other area they suggest is the one which might be most controversial. They suggest that a lot of benefit payments go to older people who are quite wealthy and don’t really need them, so we could claw some of this back and use it to pay for care for others. I can hear the sharp intake of breath happening in older peoples’ circles all round the country. Whilst in principle I think we all understand that benefits are there to ensure a reasonable standard of living for everyone, and that £100 might be a whole income for one person for a week but might be pin money for someone else, I still think this would cause massive political ructions. I don’t think any politician, particularly  the Tories with the demography of their voting base, will be queuing up for the outpouring of grey rage that would ensue.

The trouble is that whatever sector of the population is hit, someone will object. Of course they will. If it’s carers who are hit I will be first in line to shout the odds  to defend carers’ incomes. But if we all just focus on defending our own patches, nothing will change.

So what’s the solution? If the spare cash in the NHS really exists then, sure,  let’s get out hands on it but even if we do it won’t be enough. I think we all need to ask ourselves some hard questions and decide what price we’re prepared to pay for a fairer system.  So tell me – who do you think should give?

May 31, 2012 Posted by | Social Care | , , , , | 2 Comments

Another Queen’s Speech

Note: Emma Smale, Senior Policy and Parliamentary Officer at Carers Trust has contributed the following blog post.

Another Queen’s Speech and another missed opportunity for reforming the Social Care System. I wish I was surprised, but sadly this Government is rather good at delaying really important decisions or making them far too quickly.

So, the Government has decided that urgently needed Social Care legislation can be put off for at least another year and whilst there will be a draft bill, which offers some hope, it won’t look at the critical issue of funding.  This is bitterly disappointing for everyone who needs social care services and for carers. We all know that real progress can’t be made unless we find a way of paying for it, so why can’t the Government see what we see?

The thing is another year really matters when the system has been underfunded for decades. At this moment, demand for services is increasing and the amount of cash available for care is falling. Somehow, the Government seems to think that people can carry on looking after each other without support or access to affordable and good quality services. They seem to think it’s ok to carry on relying too much on carers and ignoring the truth that the system is broken.

In fact for 64 years, since the National Assistance Act in 1948, the laws affecting some of the most vulnerable people in society have been messy and confusing.  Successive governments have pondered the need for wholesale reform but the issue of funding has been sidestepped every time.

As this government scales back spending on public services and radicalises the welfare system, we are reminded daily that there is no money in the coffers. But not facing up to the funding crisis in adult social care is an incredibly dangerous strategy. We cannot let this situation go on and on until there is no ‘system’ to speak of and carers are left on their own.

This would save the state millions, but is this the ‘Big Society’ we want to part of? Surely, there is nothing fair or sustainable about allowing Social Care provision to diminish and expecting families to pick up the pieces?

What’s more, failing to address the funding gap and make reform a priority means that the pressure on the NHS and health services will continue to grow. It’s a sad fact that carers know, better than most, that failure to meet needs by social care results in a crisis that health services have to deal with – those years of isolation that lead to a breakdown and admission to hospital means extra cost for everyone. Reform also provides an opportunity to integrate health and social care services and to ensure that people receive co-ordinated care.

There is a real risk that time will run out for this Government and Social Care reform will be unfinished business. Before we know it, it will be time for another election and it is perfectly possible that a different Government will then have to sort out an even more dire situation.

We’re not asking for ‘quick and dirty’ law making which will only be damaging, but we cannot afford to loose this opportunity to make desperately needed change to the system. We need to act now and make it clear that older and disabled people and their carers cannot wait. We will not accept any more delays for reforming Social Care.

**Tweet to @Number10Gov using #CareCantWait

May 14, 2012 Posted by | Social Care | , , , | 1 Comment