I feel this same sense of shared history and common purpose with people who work to support carers. Once you have been a carer or worked to support carers, you become part of something that lasts even if your caring or work role ends. You never stop caring.

When I joined the carers’ thread, the first two carers I met were Martine and Freya. I still remember being rather dumbstruck when listening to them. It was a guy called Stewart who introduced me to them and helped me understand the issues. But more importantly, it was his passion that affected me. He was utterly selfless in his efforts to support carers.

Since, I’ve met other people who have joined the carers’ thread and seen how their passion and determination has grown. As I leave working to support carers, I think the thread is stronger than it ever has been.

In my fourth ever blog, I recounted how I had arrived for a meeting at Parliament to find a note on the door at the end of the corridor telling me it was cancelled. This feeling of having struggled along a never-ending road to find that when you get there, the door is shut is too  common for carers.

In my first blog, I said that there was no single magical solution to solve all the different problems that each carer faces. This means that we can’t just kick the door down once, we have to do it over and over again for every individual carer. Sometimes this will mean that while we make progress for some carers, others may not benefit.

But with more and more people waking up to the issues that carers face there are more and more people trying to kick down the doors. One day, there will be more people kicking down doors than there are doors. That thought may seem far away for many carers, especially when they are struggling alone.

But they should know that they are not alone. They too are part of this thread that connects carers, ex-carers and everybody working to support them. You may not know it and you may not feel it, but there are many, many people who care about you.

Take care, and goodbye

Gordon

PS: I, and my partner Claire, are starting a new blog for when we’re working in Cambodia: http://phnompenhpal.blogspot.com/

Government health ministers, Andrew Lansley and Paul Burstow, are generally supportive of the recommendations made by the Dilnot Commission. And they would be supported by Labour if they implemented these recommendations.

"...the next time we read about carers breaking down because they receive no support, we will blame you"

But the person we need to convince is George Osborne, Chancellor and the man who manages Conservative political strategy. Implementing the changes would cost £1.7bn p/a which is a lot of money but equal to only 0.25% of total current Government spending.

When the Government can find £1.05bn from nowhere for bins and council tax freezes then we cannot allow Osborne to use the excuse that there is no money to pay for this. Make social care a priority and find the cash George.

The message we need to give George Osborne, David Cameron and other MPs is this. If you do not implement these recommendations, then the next time we read about carers breaking down because they receive no support, we will blame you. The next time we read about people receiving shockingly poor levels of care, then we will blame you. The next time we hear of councils cutting vital services because they have no cash, we will blame you.

With power comes responsibility. Osborne and Cameron have the power and the opportunity to improve the lives of millions, they must take responsibility for doing so.

But we each have a role to play. Whether you need social care support now or not, at some point you or your family will. We have a responsibility to our friends and family to make sure we grab this chance for change.

We’re organising a mass lobby of MPs on 6^th March. People from all over the country will have the chance to meet their MP in Parliament and lobby for better social care support in England.

Get involved and make change happen. http://carelobby2012.org.uk/

Take action

Gordon

The Prime Minister’s  been saying a lot on domestic policy recently. I wonder if he was saving it all up over the Christmas break, making notes in between his turkey and plum duff. He’s been wading in on a few issues which he normally leaves to others, which have  hit a bit close to home on the caring front.

Over the weekend he made what was apparently an off the cuff quip about Tourette’s syndrome. Maybe some people found it funny, but I bet people with Tourette’s and their families didn’t. Most people with a disability will tell you about the names they’ve been called  or the humiliation they’ve had to put up with, just because they look different, need different things, talk differently, behave differently. Making fun of someone’s disability  to score a couple of laughs just isn’t on, and if you’re the Prime Minister, frankly, you should know better. Zero points, Mr Cameron, for disability awareness.

We’ve been talking about joined up care for as long as I can remember

And  last weekend he was on about health and social care and how they need to be more joined up. He wants to make it a priority, as care in England  is too fragmented .

I’m delighted he’s taking an interest. We desperately need our political leadership to social care right at the top of the list as a major priority to be addressed. He’s absolutely right that the artificial boundaries between health and social care make no sense and act as a barrier. I can’t tell you the number of times I speak to carers who are stuck in the middle, making never ending phone calls to different departments trying to put together all the pieces of the jigsaw puzzle. It’s no wonder carers don’t access support for themselves- by the time they’ve got the essentials in place for the person they care for, they’re exhausted, just can’t face it, or think there’s no blooming point.

But it is a bit odd, all the same. We’ve been talking about joined up care for as long as I can remember. We have pooled budgets which are supposed to mean health and social services plan  together. We have jointly agreed care plans and in some places care trusts which bring all the services together. And whilst there are successes,  they’re there because the local leadership pushes it and people on the ground are fully, root and branch, committed to making it work. In many places it’s still very much  a case of the right hand having no clue what the left hand is doing.

At the same time, the Health and Social Care Bill drives policy in the opposite direction – removing more and more central direction, and removing the need to have the same boundaries for health and care authorities. We lobbied hard on this, including talking to the PM about it directly,  because  where families need to work with multiple services – for example,  adults and children services, health trusts, education services, all at the same time –  creating extra confusion doesn’t  help and people who are the most disadvantaged get missed.  The reorganisation which health services will have to go through following the Health and Social Care Bill is going to make things a lot worse at least in the short term. I’m worried about how we will make sure everyone gets what they need whilst the NHS is trying to figure out who’s in charge and who works for who.

It’s fantastic that the PM  has spoken about the importance of social care, and of integration. If we can find ways of achieving better joined up working, let’s do it. But I’m worried that his comments suggest that if we all try a bit harder to work together then the social care system might turn out not to be quite so broke and therefore not need fixing, meaning we can shelve the difficult decisions for another day. No matter how much integration there is, social care in England needs reform and needs more funding. Let’s keep our focus there.

My parents grew up in Glasgow but moved to Perth, Scotland, before I was born. When I was ten or so, neighbours of my parent’s lifelong friends moved from Glasgow to Perth and we met them a few times but didn’t really see the Craigs that much.

A few years later in Toronto airport on the way back from our last family holiday, I told Dad that we were going to the bar where, of course, we bumped into the Craigs. We chatted and they told me to get in touch as they had a flat that I could rent in Glasgow where I was going to university. And so they became my landlords.

After university, I was working for a utility company in Perth without much purpose. It was then that Mr Craig, a Trustee of Perth & Kinross Carers’ Centre, approached me. A few months later, I began working as the press, funding and marketing officer for the Carers’ Centre.

I learnt so much during my two years there, professionally and personally, and then moved to manage a national fundraising team for The Princess Royal Trust for Carers.  After a couple of years, I moved down to London to become the charity’s policy officer and these blogs started mysteriously appearing.

However, for over three years I have been living in London whilst my girlfriend has been living in Perth, Scotland and we thought it would be good to live a little bit closer together. We had two ideas; Scotland or somewhere else.

Well, it seems that somewhere else got there first and in early February we fly out to Cambodia for 2 years. Through VSO, I’ll be working on educational policy for a group of charities there.

My life has changed because we bumped into the Craigs in Toronto airport, and it has continued to be shaped by some of the inspiring carers that I’ve met since. It has been my privilege to work for them. I am also aware that whilst I leave this job, and leave working for carers, there are many carers who do not have the choices and opportunities that I enjoy as illustrated by our Who Cares? application. It is these people who I feel that I have let down on occasion and am sorry to be leaving them.

This is not yet goodbye as there will be more posts before I leave late January and over the blog to my Director of Policy, Moira Fraser who has blogged here before. But as it is carers who I ultimately work for, I felt as though I should at least hand in my notice.

Thank you, and take good care

Gordon

Q1. The correct answer is that 89.7% of people receiving social care support in England were quite, very or extremely satisfied with the services received. This option received the lowest votes, with most people thinking only 25.5% of social care users would be so satisfied.

Q2. Same trend. Correct answer was 53.4% of social care users rate their Quality of Life as good, very good or so good it could not be improved, but most people thought only 18.9% of social care users would say this.

Q3. The reality is that 57% of social care users feel that the way they were treated when receiving a service made them feel better about themselves. Most people thought only 29% of users would say this.

Q4. We got closer to reality with this one. The most popular answer was that there are 2.81m people who get social care support in England, but the reality is that only 1.57m people do. The correct answer got the second highest number of votes, along with those thought 4.2m got social care support, which is probably nearer the total number of people with social care needs.

Q5. This is the one stat that I think should shock people. Despite the universal acceptance that more people need social care support, the actual number of people getting support fell by 12% between 2008 and 2010. Over 70% of us thought the number had increased.

Now stats are interesting but it’s what you learn from them that gives them power. The answers to the first three questions tell me that most people who get social care support are glad they do and that their quality of lives are improved as a result. So providing social care support is a good thing. The answers to the last two questions tell me that there are more and more people in need who are not receiving this “good thing” – social care support.

Putting these two things together tells me quite simply that we are failing people. The Government has the opportunity to provide a “good thing” to people that would be valued and improve their quality of life. Government must grasp this opportunity, publish their proposals in March as promised and radically improve the social care support system so that more people get more support and use less of their savings to do so. Go on Government, do something good.

Note:

 Government postpones reform until 2025

Take care

Gordon

PS. We’re going to publish on www.carers.org in a few days the results for each council from the survey of social care users, and we will also do so for a survey of carers done in 2009/10. We will try to rank performance so you can see where is doing well and where could do better. I’ll put the link up in a comment to this post once they’re up.

Good research can often challenge preconceptions and change what people think. They can challenge what we unquestioningly hold to be ‘common sense’.

The Health and Social Care Information Centre produce huge amounts of statistics on virtually everything related to health and social care, and I love them for it. They have recently released two sets of statistics that I think would surprise many people, and many even challenge our preconceptions.

So I want to put this to the test. Click on what you think is the right answer to the questions below and we will see what people think. Then on Wednesday 14^th December, I’ll post the correct answers on this blog and we can compare reality versus what people think.

Trust me – it will be exciting!

These results are for people in England receiving social care support during between 1^st April 2010 – 31 March 2011.

So, these questions look at what people who use social care think about it. But what about …

Which one do you think is the correct total?

And finally…

I hope you’re sharing my love of statistics, and I promise my post looking at the real results and what they mean on 14^th December will be worth it!

Thanks

Gordon

This year’s Carer’s Rights Day theme is “Money Matters”. The aim of the day is to highlight the need for carers to get advice about claiming benefits, getting a carer’s assessment and accessing the support they need. Often having to give up work means carers can easily face money problems and fall into debt, piling on the stress they are already under.

Unfortunately the Government is driving a bill through parliament that would cut the free advice that you can get through a Citizens Advice Bureau (CAB), law centre or your local law firm, helping you resolve problems before they go too far. At the moment, if your income is low enough, you can see a specialist adviser funded by “legal aid” in lots of areas of law. They can help you access your rights, putting you on the same footing as anyone else who can afford a lawyer.

If the Government’s plans become law they would remove free advice for around 650,000 people per year. For some cases you would no longer get legal aid at all, like a problem with your benefits or a clinical negligence claim. The cuts are so harsh that advice services may not be able to survive, especially those law centres and CAB which have lost funding from other key sources like local government.

The government says its plans would save £350 million a year but there will be long term costs. Good quality advice early on can stop problems from getting worse and Citizens Advice has estimated that for every £1 of legal aid spent on housing, debt, employment and benefits advice the state saves between £2.34 and £8.80.

It is estimated that 135,000 people per year will lose legal aid for benefits cases, of which 58% will be ill or disabled. Can many carers afford the cost of an advisor? When the average carer provides care worth £18,473 a year, this move does not seem justifiable.

However, the Bill is now in the House of Lords and Peers want changes. Baroness O’Loan spoke about what it will mean to lose free help with clinical negligence cases:

“The effect of the current proposals will be that yet another two-tier system will emerge. There will be those whose parents or carers who just cannot contemplate how to bring such proceedings and who will ultimately suffer the consequences in terms of reduced living standards.”

The bill will now go into committee stage where the peers will go over it line by line. You can still influence their decisions. Politicians need to hear from the public to understand what it would mean if you couldn’t get the advice you need. Contact Scope, who are collecting stories from disabled people who used legal aid to get the right benefits (). You can find other ideas for how you can help the campaign here: Save Legal Aid, Justice For All and Sound Off for Justice.

Related items:

Read a previous post by Gordon to see why legal aid can be important for carers

Government’s bill

Following our report, the Government has said that carers is one of only three areas that have been designated as requiring “particular attention”. Think of all the illnesses, diseases, long-term conditions and medical issues the NHS is concerned with, and then consider what it means that carers are up there as the most important priority.

Of course, the reason that the NHS needs to pay “particular attention” is because they have not been doing enough to support carers, despite additional money and Government requests to do so. This Operating Framework is a sign that Health Ministers Paul Burstow and Andrew Lansley are losing their patience having been quite clear what they expected from the NHS in terms of supporting carers.

What they didn’t expect was that most Primary Care Trusts (PCTs – local NHS bodies) would not publish plans and budgets to support carers despite being asked to; and that some would continue not to invest a single pound in services to support carers, despite receiving additional money for this.

So for 2012/13, PCTs need to agree plans and budgets with local authorities and local carers’ charities. These plans should identify how much of the total is being spent on breaks and indicate the number of breaks that should be available from that funding. Importantly, PCTs have to publish these details on their websites by 30th September 2012 at the latest.

But we can’t wait until then to act. Carers and carers’ charities need to be contacting their local PCT now to find out how they will be improving on what they were doing this year. PCTs by ranking in terms of spending on services for carers and ask the non-Executive Directors of your PCT what they will do to improve that.

The NHS has a duty to those people who have often sacrificed so much to care for people, and they also have a duty of care to their patients who are otherwise being cared for by their friends and family. Our message should echo that of the Government’s; the NHS can no longer avoid their duty to carers.

Take care
Gordon

There has been progress in some areas where local primary care trusts (PCTs) are investing significant amounts, such as £2m, in services for carers in 2011/12. In these areas more carers will access breaks, receive training to help them manage their caring role, and specialist support for carers caring for somebody at the end of their life.

But there are still PCTs (4%) that are investing nothing in services for carers, with another 8% investing less than £100,000 this year. We need these PCTs to look at the fantastic work being done in places like Torbay, Bristol, Surrey and in the South of Tyne and Wear and see the benefits to carers, patients and the NHS itself that investing in carers can produce. Torbay has found that supporting carers has enabled smoother discharges of patients from hospitals, a key aim for the NHS and Dr Thomas, a GP and Chair of Torbay Professional Executive Committee believes carers are a top priority:

“Introducing Carers Support Workers in our practices has produced many benefits. It has facilitated early identification of people who are carers offering them practical and emotional support. As the population ages and more people live with long term disability the support for carers will remain a priority.”

The challenge for Government must be to ensure that with more new money being given to the NHS in 2012/13, the NHS uses it to support carers. I seem to have said this every year for three years but I do think Government will act to push this.

The Health Minister, Paul Burstow, is taking this report seriously and we met with him on Tuesday to discuss our findings. He will act to increase the expectations on PCTs, and on this he has the backing of the Prime Minister who had requested an investigation into how PCTs were spending the additional money.

PCTs are facing a particularly difficult year in 2011/12, including tightening budgets, but the Government has been clear about PCTs’ responsibilities regarding carers. But some PCTs are failing in their duty to carry out what has requested of them. For instance, only 13% of PCTs have published budgets for supporting carers when all were meant to by 2 September.

However, PCTs do not only have a duty to Government, they also have a duty to support those who sacrifice so much to care for others and a duty of care to their patients who are often relying on support from these carers. Too many are failing in this.

Take care

Gordon

Related information:

Read the report “NHS not making the break for carers” here

Give Carers a Break campaign

Gigi Burgdorf wrote recently about some of the unexpected reasons carers gave for using internet-based services. One particularly poignant response was “no-one can hear what you’re typing.” This kind of privacy can be vital for people using an online support service; perhaps especially so when, as is the case for some of the young carers we meet, their families wouldn’t want them identifying themselves as carers at all.

Similarly, one of the things that our users have told us they value on our sites is the chance to start afresh, opening themselves up to others on their own terms, and without fear of being judged on their appearance, accent, status or—yes, sadly—the fact that they’re a carer. The teenage experience in particular is rife with issues of labelling, categorisation, conformity, in-groups and out-groups. The same is true, no doubt, of all age groups—sometimes in subtler ways, and sometimes not so subtle. It’s no surprise, then, that people might turn to a medium in which they have some say over the ways in which they’re labelled. Internet services can do this: used carefully, they enable you to connect with other people, while potentially giving you the tools to limit and define those connections in quite specific ways.

That’s why it’s been an interesting experience for us to tread, half a step at a time, into the world of social networks. (Since it’s 2011, clearly we’re mainly talking Facebook; but ideally our experiences in this should help pave the way when the Next Big Thing comes along). Engaging with people on Facebook specifically connects you to their real names, identities, friends and information. We’ve been working recently on developing and testing Who Cares?, the Trust’s new Facebook app that raises awareness about a carer’s life and its effects on their friendships. The app helps you to pick one of your Facebook friends to be your “carer”; the ways in which this affects their life then start to become obvious. It’s a thought-provoking experience, and it combines fact with fiction, online with offline, in a way we’ve never done before.

At the same time, we’ve been gradually integrating other social media stuff across both Carers.org and Youngcarers.net (YCNet). All of these provide small backdoors to the internet: ways to leave our site and make contact with others on other platforms. That’s something we resisted for a long time on YCNet; since we can’t guarantee a user’s identity, we couldn’t advocate their getting in touch with each other privately. Equally, if some dispute began on Carers.org and continued on some other site, we were limited in what we could do to help sort things out.

But here’s the thing: in the end, one of the biggest favours we can do for carers is to encourage and support their forming connections with other people. It’s often said that people are busier and have less time for each other these days. But the evidence is clear that being a carer can, and frequently does, have a significant effect on your chances of making and keeping friends.

So, over the last year we’ve started to approach things slightly differently. On the security/privacy side of things, we’re moving slightly further away from prevention, in favour of education: rather than putting all our efforts into restricting young people’s contact with each other, we want to support them to do it safely. Nobody has to opt into every feature on our website, but we have to allow friendships and interaction to flourish—or, at the very least, get out of the way. There are enough barriers already.

Who Cares? is an awareness-raising rather than a support tool. On the surface it’s a piece of fun, but it definitely makes you think. Without giving away too much of what’s in it, I think some people will be uneasy about the message it conveys. I think it’s broadly realistic. But it’s partly optimistic too. And if it encourages somebody to think twice about a friend or neighbour’s situation, and perhaps spare a friendly word, so much the better.