Get pledging for the Carers Week quest

This week, all of the organisations involved in Carers Week – including Carers Trust, Carers UK, the MS Society, Age UK and others – went to MP Norman Lamb with Carers Week membersWhitehall to launch the Carers Week quest.  The aim this year is to really focus our minds – not just amongst carers charities, but across the NHS, local authorities and other charities. We need to work together locally as well as nationally because although we know there are around 7 million carers in the UK, the vast majority do not get anything like enough support. Continue reading

February 14, 2014 Posted by | Carers Week 2014, Young carers | , , | 2 Comments

2013: a year of ups and downs for carers

It’s been quite a year for carers. Ups as well as downs. In the Carers Trust  policy team we’ve been running from one thing to the next, trying to make sure that we cover as much as we can in this ever changing political environment.

This has meant working with other charities and partners as much as possible so that between us, carers’ views are heard and we can achieve the most change we can. Many thanks to all our friends and colleagues in the Carers Trust Network across the UK, The Care and Support Alliance, the National Young Carers Coalitions and local  and  national government, politicians, researchers, and other friends. A special big thanks to Carers UK, the Childrens Society and Barnardos for their partnership and support this year. Together we all achieve more than we ever could on our own. Continue reading

December 20, 2013 Posted by | Uncategorized | , , , | 4 Comments

The start of a better future for young carers

You might not have noticed it as it came and went, but yesterday, Monday the 18 November 2013, was a historic day for young carers in England.

As you might have seen in a previous blog, the work we have been doing to ensure young carers have their rights recognised in law has finally paid off. Following the statement from the Secretary of State, the Government put forward an amendment to the Children and Families Bill that will mean young carers , on the appearance of need, will have a right to assessment and to having their needs met. This is an enormous step forward. The amendment was debated last week, and technically, it passed on Monday. The law, we expect, will be passed in full in the New Year, and will come into force in 2015. For the first time, in law, young carers will be recognised. Continue reading

November 22, 2013 Posted by | Young carers | , , , | 2 Comments

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

Who will do an Olympic song and dance for social care?

I didn’t think I could get away this week without a reference to that small sports event which you might have heard about. Living about a mile down the road from the Olympic Park , it’s been hard to miss the build up over the last few years. Now that it’s finally here, it’s quite surreal. On Friday night, I went to the “other” park in Stratford, to watch the opening ceremony on a big screen  with , it seems, most of the rest of east London. It was fantastic – a genuine sense of excitement and pride that all this is happening in our home town as well as a competition for which nationality could cheer their team the loudest . (GB won – home advantage. India and Jamaica ran well to claim silver and bronze.)

Danny Boyle’s extravaganza was breathtaking , and has gone down well, if leaving some or our overseas friends a little bemused. I , for one, was delighted with the section on the NHS. It’s absolutely right that we should take the opportunity in front of the world to say that our NHS, born in times of terrible hardship, and based on values which perhaps only something as terrible as a World War could have brought to the fore, is something that we should be proud of.

So few other countries can emulate it. I can tell you some stories where the NHS has got things wrong, but I can tell you more of when it has got things right. When my family have needed it , it’s been there – no Visa card required.  No-one had to sell their house or ask friends and family for money. We all paid for their care, as we will do for others who need it.   I’m proud to live in a country where people don’t die because they can’t afford healthcare.

However, whilst all this was going on, I was also  thinking about social care. I’m also proud of the many good social workers and care staff out there, and also family carers,  who nobody is dancing in Olympic ceremonies about. Social care is not free for most people, unlike the NHS, but it’s no less needed.

I don’t know how social care got missed out of the party when Nye Bevan’s vision for meeting the health needs of our country was born, but it did and it has never caught up.  Our chances to change this with the draft Care and Support Bill will address some  inconsistencies but  will stop short of the ideal, by a long way. Until such time as we can guarantee that, whatever our needs are, whatever our means are,  and whatever family support we have, we will be able to live a dignified and fulfilling life, our social care system will not be fixed.

I hope you’re enjoying the Olympics, and here’s to the success of all those athletes giving their best. And somewhere,  not very far away from the main action at the stadium , I won’t be winning any medals and there probably won’t be any fireworks,  but I’ll be  doing my own little dance for social care.

Enjoy the Games everyone.


July 30, 2012 Posted by | Olympics | , , , , , | 1 Comment

Young carers rights an afterthought for the draft Bill

This week has been a prime example of the hide and seek game we have to play in policy work.  The draft Care and Young carer helping his brotherSupport Bill was published the week before last,  and as I mentioned last time, actually has lots of good stuff in there for carers generally. No money, of course, so what it means in practice is debatable ( rights without resources are not a great  load of use), but it was at least a start.

So, like many others in the sector, we said we liked the carers bits but if the Government could get on with sorting out the cash issue, that would be much better, thankyouverymuch.

But in between all of this, emails were flurrying around because, although we could see that rights for adult carers might be improved, it is clear that young carers will still be treated separately.  We were worried that they’d been missed out altogether and that all the rights for young carers that we’ve all fought for might disappear.

Over the course of the week, Emma our senior policy officer pored over the text of the draft Bill, working out clause by clause what we think it means. All of us involved with young carers’ work emailed  and phoned, sharing information, working out what is what. And then we got a helpful email saying how it’s going to work – the new Bill will only deal with adults, or young carers approaching adulthood. Young carers law will remain the same, which means that little will be actually lost,  but this means that procedures for young carers will be different from adult carers. This will just cause confusion, and there’s plenty of that already.   It means we will need to follow up  our work on this Bill with working for change to children’s law in the future to make sure law for young carers matches law for adult carers.  So another big job to add to the list.

A real concern is that we can’t just look at young carers in isolation. We need to make sure that when an adult community care assessment is carried out, then a young carer’s assessment can be triggered if there is a young person there who may be taking on a caring role.   We need to reduce inappropriate caring roles, ensuring that the needs of adults are being met and not forcing a young person into a caring role.  This means working in a preventative way, not  waiting  until a young person gets into difficulties and their life is being negatively affected, with the impact this can have on their education, and their life.

If we wait till someone comes forward for a young carers assessment, it is often too late. We need to get in there early and make sure young people get support early, working with their whole family. If we don’t link adult law and children’s law adequately,  and make sure they work well with each other we will end up with systems which  people  don’t understand, don’t work well together, and just assess young carers in situ, accepting their role  rather than taking all the opportunities we can to reduce inappropriate caring.

The draft Bill doesn’t intend to reduce rights for young carers, but we’re worried.  Young carers rights shouldn’t  been an afterthought to be sorted out after the main show is over.


July 25, 2012 Posted by | Young carers | | 2 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

Carers Week 2012: You shouldn’t have to wreck your health to care

The theme of Carers Week this year is “In sickness and in health.”  You can look at that from all sorts of points of view. Obviously the quotation is taken from marriage vows, and for those people caring for a  partner, but no less for those caring for parents, siblings, children, or  friends, you’re there alongside each other through thick and thin. So the theme of Carers week might prompt you to reflect on the good times and the bad, the positive times and the difficult times. We don’t just discard someone when they’re ill, disabled or frail – we’re in it together.

But no-one’s saying that’s easy, and if you’re the person providing the care, it can feel unending, exhausting and frustrating some days. And things are getting worse- services closing with cutbacks, and less benefit money available. The research carried out for Carers Week found that 84% of people never expected to be a carer – and who does? Caring is something that generally comes unexpectedly – sometimes it happens overnight, or sometimes if develops slowly, depending on the situation of the person you care for.

Many carers feel sad for the different future there might have been, or sometimes the person they feel they’ve lost. Despite this, few carers walk away –not completely, at least although many sometimes wonder what would happen if they did. Carers Week is a chance to recognise the millions of carers who, through thick and thin, good times and bad, are there to care.

Thank you all, so much.

But it’s not just about the health of the person who has the care needs. Carers often put their own health on the back burner. Things need to be done, and perhaps there’s no-one else. So you get on with it, just do it, even though you’re exhausted, even though you’re feeling ill or really low. The problem is that if you’re exhausted, and you get ill, then who’s going to care for you, and the person you care for?

It’s hard to prioritise your own health. Many carers find it hard to take a break and even getting to doctor’s appointments. Having the mental energy to make an appointment, with all the messing about that entails is sometimes just another hassle that carers can do without.

With 10% of the population having a  caring role, and the huge levels of poor health within the caring population, the Government needs to address this differently. We need to think of this as a public health issue. We know about lots of factors which make people unwell – lack of exercise, poor diet, smoking, drinking too much, as well as the social factors that are linked to this. The Government realises it needs to address those as they not only cost the NHS but they also on people’s ability to work, and so massive campaigns are funded. But where are they putting the resources in to support carers’ physical and mental health? The kind of money that would really make a difference?

I know there’s not a lot of money about. But saving money at the expense of carers’ health, whilst expecting them just to pick up the pieces left behind by the reduction in services and decimation of benefits, is no kind of saving.  Carers already give up so much to help another person. They shouldn’t have to wreck their health too.

Related links:

Carers Week

News story: Alarming number of carers sacrificing own health by putting off medical treatments

There are campaign materials available for carers – template letters/emails to MPs, GP surgeries and for politicians to send to local authorities/CCGs/health trusts etc. Download campaign templates here

June 19, 2012 Posted by | breaks for carers, Health, Hidden carers, Mental Health | | 1 Comment

Hidden carers aren’t hidden at all

We talk a lot about “hidden carers” – the thousands of carers out there who are not in touch with any kind of support. I Sainsbury's campaign for hidden carerswonder what  a “ hidden “ carer looks like. Are they in camouflage with faces painted in green and brown, with khaki trousers and hat with twigs on?  Or are they like Harry Potter with an invisibility cloak? Well, I know some carers feel like they’re invisible, at least.

The truth is that they’re not hidden at all. On every street in every town there is at least one carer. They might not call themselves that, but they’re carrying out caring roles, looking after people who need them.

This isn’t an invisible thing to do. Looking after someone involves taking them to appointments, or to school if they’re a child, getting help from care services for them, doing their shopping, getting their prescriptions, making sure they get out and about and take part in the  activities they need to keep them healthy and happy. None of this is invisible or hidden. In almost all these activities, there are people who can see there is someone there, providing significant support to someone else.

However, just because it’s visible doesn’t  mean it’s always seen. If people providing these kinds of services aren’t thinking “carer” then perhaps it just doesn’t cross their mind to ask if someone is doing OK and whether they are getting the support they need. Maybe they don’t think it’s their job and perhaps sometimes they don’t want to feel like they’re interfering.  It is quite a personal issue after all. But as one carer once said – I just wanted someone to ask: “How are you?”.

Of course not every carer will want help from an external source, and this is absolutely fine. The other week, I spoke to a carer  who looks after his daughter who has a physical condition which needs painful daily treatment. He just regards himself as a dad and this as his job . But if he does need support, now or in the future, at least he now knows we’re here and what kinds of help we can provide.

So what we need to do is make sure being a carer is something we’re not scared to talk about publicly and we all see supporting people in their caring role  as  our business. This means we need to get beyond the people who already think of themselves as a carer, out to the wider population of people who think they’re “just” someone’s dad, or mum, or daughter, or brother, or neighbour, or friend.  This week – helping to kick off Carers Week –  in partnership with Sainsbury’s we’re working with some Carers Centres in London to raise awareness amongst   carers locally and give them a chance to find out more about the support that is available, even if they don’t think of themselves as a carer already. If it works, we hope to roll this out more widely.

It’s great that an organisation with as wide a reach as Sainsbury’s sees the importance of carers and  is prepared to put so much work into this. If they can, surely others can too .

More about Carers Trust’s “Hidden Carers” project in partnership with Sainsburys

June 15, 2012 Posted by | Hidden carers | , , | 2 Comments

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