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 Allowance – in the dock

My dentist recently wrote to me advising I had not booked an appointment for some time. I then could not tell my mortgage provider who my building and contents insurer was, because I couldn’t find the policy document.

I am rather disorganised. Which is why I was attracted to Helen’s business proposal in the final programme of The Apprentice last Sunday. Her business would offer concierge /secretary type services for people – such as organising dentist appointments and storing information of who your insurer is.

filling in formsThis would be a dream for me, but can you imagine how helpful this would be for carers who can be responsible for all of the affairs of the person they are caring for, on top of everything else they are dealing with?

Carers are often lost amidst a myriad of social care, health and welfare systems as they try to figure out how best to get support for the person they care for. It is no surprise that something might slip through the net.

For some carers, what slipped was that some years after first receiving Carer’s Allowance, they did not tell the Carer’s Allowance Unit that they had begun to earn over £100 p/w which means they are no longer eligible for Carer’s Allowance.

In a recent discussion on our website forums, 16 carers advised that they were prosecuted by the Department of Work and Pensions for this error. Some of them had disclosed the income to the Tax Credits office but had not realised that they also had to tell the Carer’s Allowance Unit.

My dentist understood and found time for me; my mortgage provider laughed and said my insurance broker could tell me. The DWP took carers to court. In all of these cases, carers said they admitted their mistake and had offered or even started repayments yet DWP still pressed prosecution. 

The effects were carers lived for months in fear of jail and what would happen to the person they were caring for. And fearing the loss of their jobs working in schools or with vulnerable adults. Or wondering where they could find the money to pay for a lawyer. One carer is now so scared that she refuses to claim Carer’s Allowance even though she is eligible, in case she makes another mistake and goes through the nightmare again.

All carers who went to court were found not guilty, and others had their cases dropped by the DWP but only after many months of fear. However, two carers  are still being taken to court despite admitting their mistakes and starting repayments.  

What has happened to these carers over the past year is horrifying. The lack of understanding shown is astounding and deeply saddening. It’s a shame when your own Government shows a fraction of the understanding that dentists and banks show.

Take care,


July 22, 2011 Posted by | Benefits, Carer's Allowance | , , , | 18 Comments

Government Does Good by Not Scrapping Carer’s Allowance

A couple of weeks ago, the Government asked to meet us to discuss Carer’s Allowance and whether it should be Carer and caree laughingmerged with the proposed Universal Credit or not. We said not.

If you care for somebody for more than 35 hours p/w and that person receives the mid/high rate care component of Disability Living Allowance, then you can get the Carer’s Allowance of £53.90 p/w. However, you don’t get it if you receive another higher benefit such as Income Support or State Pension, or are in education or training for more than 20 hours p/w.

Considering this, it’s no surprise that many carers strongly believe that Carer’s Allowance is not enough and too many carers can’t get it.

The Government wants to merge numerous benefits such as Jobseeker’s Allowance into one single benefit called Universal Credit to simplify the system. However, there are two reasons why carers opposed moving Carer’s Allowance into Universal Credit.

The recognition that receiving a benefit specific to carers is important to them. It shows that the Government understands that they are not like other people receiving benefits – they are actually having to make a valuable contribution to qualify for that benefit. They want to know that the Government appreciates this.

Also Universal Credit will be a means tested benefit that will take into account savings and earnings of others in the household. Carer’s Allowance is not means tested. A change would have meant that carers could still be caring for more than 35 hours p/w but would have received a Universal Credit amount even lower than £53.90 because of savings they may have (which may be needed to pay for care).

The Government has an understandable aim of targeting benefits at those with most financial need, but withdrawing Carer’s Allowance from some would only make carers feel even more unappreciated and taken advantage of. The health and social care system is terrible at recognising carers and for many carers Carer’s Allowance is the only recognition they receive for what they do.

Taking Carer’s Allowance away from those who give so much would have been simply wrong. This is the message we gave Government. We are glad they listened.


February 17, 2011 Posted by | Benefits, Carer's Allowance, Carers Strategy, Conservatives, David Cameron, Liberal Democrats | , , , , , | 23 Comments

Comprehensive Spending Review: What it Means for Carers

Note: The following blog post has been contributed by the Director of Policy at The Princess Royal Trust for Carers, Moira Fraser

Well, Wednesday was the day we’d been waiting for. After months of saying “we’ll have to see what happens in the Comprehensive Spending Review (CSR),” we finally got there.  We were expecting the reduction in funds to local authorities, and the scythe to benefits for many. That doesn’t make them any more palatable. We didn’t expect the social care money – £1billion to local authorities and £1 billion from the NHS – somehow. It is unlikely to be ring-fenced , so get your calculators out folks and start counting where it goes.  A bit of a sweetener, and in the spirit of fairness (to use a Cameronian term), this is better than we thought it might be.

But  then you look at some of the details. Carers are generally not at the most affluent end of the market, and are likely to start experiencing this new “fairness” first hand. Rents for new tenants in social housing are 80 per cent of the private market rate. This means that the average rent for a three-bedroom council home is likely to treble from £85 a week to £250 a week. Benefits are being capped at £500 a week which means that about 50,000 families, mainly in London, will lose on average £93 a week. And that’s before we start on the one year time limit for some people on Employment and Support Allowance, changes to Housing Benefit, removal of Education Maintenance Allowance, reduction in support for adult learners studying for GCSEs or A levels for the first time, and a vast range of local amenities likely to be severely cut.

Carers support a family member or friend,  often at great personal cost, generally for nothing or for a pittance of £53 a week Carers’ Allowance . They save the national exchequer 87 billion pounds a year. I’m not sure what is more cost effective than that. Cutting chunks of a vulnerable family’s income means they end up with fewer choices and fewer chances. Social care can help, but it can’t replace a decent income and a range of community support.

“Those with the broadest shoulders must carry the heaviest burden” said the Chancellor.  Well I’d agree with that. It’s just that these don’t sound like the people with the broadest shoulders to me.

October 22, 2010 Posted by | Budget, Carers Strategy, Conservatives, David Cameron, Liberal Democrats | , , , | 7 Comments

Carers’ Strategy After Government’s Comprehensive Spending Review

The Government’s consultation on their Carers’ Strategy (England) closed on 20th September and they will publish what they will do over 2011-15 in Nov/Dec after considering what is announced in the Comprehensive Spending Review on 20th October. This is when we find out how much government departments and local authorities will get and for what over 2011-15.

The problem I see for this Government regarding carers is that the Coalition Programme for Government published in May this year contained the following pledge:

“We will use direct payments to carers and better community-based provision to improve access to respite care.” (England)

Hitherto, it is local authorities after a care(r) assessment that decides who should get a Direct Payment and it is local authorities that fund organisations that provide respite. If Government cut funding to local authorities, as they will, then how can they deliver the pledge of improved access to respite?

So, I was surprised when Paul Burstow repeated that there will be more direct payments to carers. Likewise, how will they deliver better-community based provision when local authorities will be receiving less and it is a near certainty that the Carers’ Grant will not be repeated?

In 2010/11, local authorities in England received £256m within their total budgets to spend on carers. It was not ring-fenced but how much each council received of the £256m was published so local people were able to hold councils to account for what they did with that money. Councils will still be expected to support carers, and they will be monitored on this, but it is unlikely they will receive an identifiable amount for this.

We also talked to Paul Burstow about the commission on long term funding of care and support. This commission will produce a detailed plan by the end of July 2011 and Paul Burstow will not comment on potential plans while the Commission is deliberating. I told him that a health professional once told me that the biggest stumbling block to close working between health and social care is that health care is free at the point of need and social care is not. Since he was so enthusiastic for closer working, I asked him what he thought of this. Seeing what I was angling for, he just smiled and declined to comment.

Ivan Lewis MP, who has been elected to the shadow Labour cabinet, agreed with me in the future system carers have to be compensated for providing care as I set out in a previous blog discussing insurance scheme for care needs.

However, we do need to know soon how they will give more direct payments to carers and ensure better community-based support.

Take care

October 20, 2010 Posted by | Benefits, Budget, Carers Strategy, Conservatives, David Cameron, Liberal Democrats | , , | 7 Comments

We cannot take the contribution of carers for granted

Carole Cochrane, Chief Executive at The Princess Royal Trust for Carers, is guest blogger this week.

Carers provide care worth an estimated £87bn p/a. It would seem logical that at a time when resources are restricted, we do everything to protect this most valuable contribution. In reality, we take this contribution, and carers themselves, for granted.

The Princess Royal Trust for Carers’ survey finds that two-thirds of carers have used all of their savings to cover the costs of caring for somebody else. One in 10 has had to borrow at “loan shark” rates and 60% from friends and family. These financial pressures added on to the strains of caring, led 37% to say they don’t want to wake up in mornings and 45% to say they can’t cope.

The government will publish their plans to support carers in shortly before Christmas, but what it can do will depend greatly on the comprehensive spending review (Oct 20th). The current financial situation will force many to think only of the short-term but the long-term demographic trends point to an increasing need for families to provide care and support. The choices we make now will have long-lasting effects.

There are several reasons why we cannot continue taking carers for granted.

First, the excessive strain of caring causes widespread ill-health among carers from a higher incidence of stroke to mental health issues to reduced life expectancy for carers older than 65. The costs of a carer needing hospital treatment are multiplied by the person they are caring for also needing increased NHS and social care support.

Second, supporting carers has been shown to improve outcomes for patients, by assisting reablement and recovery. In addition, support reduces emergency and readmissions to hospital and delays the need for residential care. And we must do it for ourselves. Three in five people will become a carer at some point in their life. You do not want to be left in a system that does not help you provide care for your husband, wife, father, mother or child.

Lastly, we have a moral duty to support families who have given up their own lives and dreams to care. Before the general election in May, David Cameron and Nick Clegg sung the praises of carers, but it is not praise they want. They want help to care for the relatives or friends who need them. If the government wants to build a society that cares, it must support carers.

September 23, 2010 Posted by | Benefits, Budget, Social Care | , | 3 Comments

How much do you value Carer’s Allowance?

My last blog argued that we should not just think of carers as carers, but as people with various identities – football fan, theatre-goer, lawyer, plumber and even husband and wife. You lose your whole self by just focusing on one.

However, yesterday I heard about the problems created because carers do not identify themselves as carers. Because they do not think of themselves in this way, they do not know what support is out there for them as a carer.

Many recognise the act of caring but not the name of carer

Finding these ‘hidden’ carers is considered a priority which is why the previous Government spent a lot of money advertising where people who care for someone can get support. The posters asked whether you cared for somebody rather than whether you were a carer and there was a large increase in the number of people seeking support, many for the first time..

Many people you speak to will say that they don’t consider themselves a carer and seem to reject the label, preferring to put what they do in the context of being a son/daughter/parent/wife/husband. Others find being identified as a carer empowering as carers have specific rights and actually gives them an identity. They value the label.

The question of how much carers value the label may shortly come into greater focus.

The Dept of Work and Pension’s welfare reforms propose a universal credit or single working age benefit, which could (only could!) mean the end of Carer’s Allowance as a separate benefit. However, if this was to result in carers on Carer’s Allowance, which is the lowest benefit, receiving larger benefits, would this not be a good thing?

Your answer may depend on how much value you attach to the label of carer. Of course, any single working age benefit may still include extra amounts for higher costs of disability or caring, which would recognise the act if not the name. And as the advertising campaign highlighted above showed, many recognise the act of caring but not the name of carer.

Of course, you can still be a carer without receiving Carer’s Allowance – approximately only 8% of carers receive it – but interesting to hear people’s thoughts on this and the proposals.

DWP, 21st Century Welfare, consultation Summary.

Take care


September 12, 2010 Posted by | Benefits, Carers Strategy, Social Care | , , , , | 20 Comments

How Much to Give Back to Carers?

This is the final blog of a series of three. It may help to read the previous two to understand what the heck I’m talking about.. I previously outlined why families and the State should have responsibilities to provide care, and that the Commission on Funding Care and Support must consider how care provided by families can be valued in terms of giving something back to families.

The final question to be addressed is how do you work out how much should be given back?

My report nine months ago outlined a method to do this.

Step 1: A person would be assessed to work out how much care they need and the cost of this care (or value of personal budget).

Step 2: A carer agrees how much of the care needed will be provided by them, which results in a reduction in value of the personal budget or care package provided by the State.

Step 3. A % of the value of care provided by the family is given back to the carer

My report outlined projections based on percentages of 15%, 20% and 25%. I found it strange that none of the positive or negative comments on the report were about the percentages that I chose. Just to reiterate, I was saying that Carer A provides X value of care that would otherwise be provided by the State, and that they should get 25% of that value back.

One person did comment that if you started at 25%, what would stop people asking for 40%, or 60% or 80% or right up to 100%? And some may say, if I’m providing care that would otherwise have to be provided by the State, then why should I not receive 100% of that value?

The answer to this goes back to my first blog in this mini-series; care should not be the sole responsibility of the State. In fact, the responsibility of the State is to support families to care, and provide care where families cannot or are unable to meet all needs. So, the starting point is not that families are doing the State’s job, rather the State is adding to or replacing what families do.

Giving carers 100% would be equal to paying families to provide care as you would a care agency. This appears to contradict the responsibility that families have and implies that my wife would only care for me if she were paid to.

So, is 25% correct? Honestly, who knows. There is no definite answer or mathematical proof that can work out exactly what it should be. It would be a judgement call dependent on circumstances at the time. So I’m afraid at the end of these three blogs, I don’t have the final answer but I think I know the direction we have to go in.

Finally, I realise that this blog strongly argues that families have responsibility to provide care. However, individuals also have rights, and individuals should not feel forced into giving up their own life to provide care. The State has a responsibility to help individuals enjoy their own rights to work, leisure and a quality of life while helping them to provide care.

That is the aim.

Take care


August 23, 2010 Posted by | Big Society, Carers Strategy, David Cameron, Individual Budgets | , , , | 6 Comments

Considering Insurance Scheme for Care Needs

This is part 2 of the previous blog, so read that now if you haven’t. We established that individuals and Government have a responsibility to provide care.

The Coalition Government have created a commission to look at the funding of care and support in England. A chief consideration will be creating either a mandatory or voluntary insurance scheme whereby you pay in advance of having care needs and the policy will cover the costs of your support needs that are not met by the Government’s contribution.

So, I pay £20 p/m and then when I’m 75 and need support to live at home or residential care, my insurance company will cover the costs (let’s assume reasonable insurance companies for this blog’s purpose). Sounds simple.

But what if my wife (this isn’t a public proposal Mum) decides that she would like to care for me and doesn’t care that the insurance wouldn’t pay her to do it? We’ve just paid all that money for no reason. This could lead to two things:

1. Fewer people provide care because they feel as though the insurance company, or Government if it is publicly run, should pay for all care

2. People don’t pay for insurance because they expect to receive family provided care

Let’s start with the first scenario. Fewer people caring increases demand on paid care, pushing up costs of the system. This is bad news for a Commission that is trying to create a more sustainable system because of projected funding gaps. If carers currently provide £87bn worth of care, the system could very quickly become completely unsustainable if families stop caring.

But the second scenario doesn’t look good either. This would increase the demands on families to provide care when we already know there is too much pressure on them currently.

The solution to overcome these problems must encourage and account for families who are providing care.

There is no way of knowing how much informal care you will receive whilst paying your insurance, which is generally before you have support needs. So the only way to recognise the caring contribution is by giving rebates to families when they are providing care.

Does this solve the problem? Not quite. How much do you decide to give them?

It’s another ‘to be continued’ as the next blog will look at this question.

Till next time, take care


August 16, 2010 Posted by | Big Society, Carers Strategy, David Cameron | , , , , , , , , | 5 Comments

Do Carers Fit Cameron’s Big Society?

Whilst you’ve been treated to a few guest bloggers, I’ve been doing some thinking. This could be dangerous but please stay with me!!!

Cameron’s Big Society is all about redefining the relationship between individuals, communities and Government/the State. But what does, or should, this mean in relation to carers?

I actually think carers don’t fit Cameron’s view of current society. His view is that Government is too involved; does too much in people’s lives; and has extinguished the do-it-yourself (or ourselves) attitude. We have become reliant on the government.

David Cameron on GMTV

David Cameron announced a Big Society plan

How many carers feel that they are reliant on Government? Or that Government in the form of social and health services are too involved? Or that carers don’t very often do it for themselves?

No, it seems that carers fit the society that Cameron wants to create. Individuals, families, friends and neighbours taking responsibility for the care of each other. Carers are not people passing the buck to the State, they are people doing it for themselves.

But that’s not the end of the story. There are fundamental questions that follow from this:

  • Should Government be more involved – what is or should be their responsibility?
  • Carers are taking responsibility, but is it their responsibility to do so in the first place?

Legally speaking, Government does have responsibilities regarding people requiring care and support, but there is not a law saying that people have to provide care.

From this, you could say that carers are doing what Government should be. You can see this feeling contained within some of the campaign messages that we/carers/carers’ organisations use: carers save the Government £87bn from the care they provide; carers only get paid £53.90 (Carer’s Allowance for which you have to care at least 35 hours p/w) which is well below the legal minimum wage.

But these two messages raise two questions:

Are we saying that people should not be providing any care and the Government provide it all? Are we saying that people should be paid to care for spouses, parents, children or siblings rather than expecting families to provide some element of care for each other because they want to?

I don’t think many people believe that the Government should provide all care, with many wanting to be the one who cares for their wife/husband/father/mother etc. And I think many would say that families should be there for one another, and not need to be paid to do so.

So, there should be responsibilities on both individuals and Government. What should those be and what does that mean in terms of policy? That’s for the next blog.

Take care,


August 12, 2010 Posted by | Big Society, Carers Strategy, Conservatives, David Cameron | , , , , , , , , , , | 11 Comments