NHS cannot avoid their duties to carers

The Government has made an immediate response to our ‘NHS Not Making the Break for Carers’ report by prioritising carers in the NHS Operating Framework for 2012/13. The Operating Framework is the set of requests given to the NHS by the Department of Health every year, guiding their priorities.

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

NHS fails to increase support for carers

The NHS in England is receiving an additional £400m over four years, 2011-15, to increase support for carers but our report, published today, has found that the NHS has not increased the level of spending on services for carers from last year. Indeed, there might be a small decrease.

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

The complicated issue of friendship

Note: The following blog post has been contributed by Ewan Main, Online Support Manager at The Princess Royal Trust for Carers

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.

GPs can be a lifeline for carers

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

Trust me, I’m a doctor
 
Well I am, but not a doctor of anything useful. A PhD can come in handy as a doorstop or fly-swat but it’s not much good if anyone’s having a heart attack. It a good job I do know some real ones who I hope would be a damn sight more useful in an emergency.

For carers, a decent GP can be more than just useful. They can be a lifeline.  Of the UK’s 6 million carers, hundreds upon thousands go unrecognised and unnoticed. Many don’t even know they’re a carer themselves. However the one place you can pretty much guarantee a carer will end up fairly regularly is a GP surgery – if not for their own health issues, then for the person they care for.

We’ve worked with the Royal College of General Practitioners (RCGP) for a number of years now, because they get how important this is. If you don’t look after carers, sick people get sicker. It’s as simple as that. And more to the point, the carer gets sick too and then you’ve got two people using NHS resources instead of one.

All this seems obvious. But still it’s often not done. How many times have you been told you can’t have information about how to help someone manage their condition because it’s confidential? How many times has someone said to the doctor “no really, I’m fine” when you know they’re really not fine at all? How many times tried to help but felt you’ve not been listened to? And how often have you needed to go to the doctor yourself but just not been able to – because you can’t get out of the house or you’re just too dog tired?

We’ve just published a new Action Guide for GP practices, jointly with our friends at RCGP, to help GP practices be more carer friendly.  Just listen. Think about depression. Think about family finances. Signpost to services. Plan for emergencies.

Not hard, not complicated.

Just needs GPs to take carers seriously and do it, working with their local Carers Centre.
Trust me.
 
Read our guide here

No one-size-fits-all method for providing carers’ services online

This is a guest blog by Gigi Burgdorf, Practice Sharing Champion at The Trust and Crossroads Care.

When I first started conducting focus groups for a report about carers and the internet – How can the web support carers? published this week by Crossroads Care and The Trust – I thought I had a pretty good idea of what the research would reveal. I had a list of questions about what sites and features carers liked and what barriers might prevent them from getting online, and to be perfectly honest, I thought I could predict what many of the answers were likely to be.

New report on ‘How can the web support carers?’

But when I actually started getting feedback from carers, I was surprised at the sheer number of different viewpoints on every issue. It soon became clear that writing the report would not be a simple matter of saying, “these are the services that should be available online and here’s how to set them up.” When discussing the idea of accessing emotional support by email, it was easy to predict that opinion would be divided due to the fact that some people love email while others hate it. But the actual reasons for or against went beyond a simple case of like or dislike.

At one focus group, a supporter of the idea said that, although she didn’t love email, it would be a good way for her to access support because “no one can hear what you’re typing”. She felt she couldn’t be completely open on the phone or when a support worker came to visit because the person she was caring for could hear her from the next room, meaning she had to censor what she said to protect his feelings. A clear case for email support was made, and several other carers echoed the sentiment.

And then another carer spoke of how useful she found telephone support as it meant she could talk while doing other things like folding the laundry or cooking her children’s tea. If she wasn’t able to carry on with other responsibilities while having the conversation, then she felt she wouldn’t be able to find time to talk at all. To her, and several other carers with similar perspectives, offering email support was as good as offering no support at all.

For every type of online service we discussed, there were endless reasons for and against. It began to seem as though there were as many different opinions about carers’ websites as there were carers. And ultimately, that’s what the research showed – that because every caring situation is different, there is no one-size-fits-all method for providing carers’ services online.

So instead of trying to formulate prescriptive rules about carers’ websites, ‘How can the web support carers?’ focuses on sharing the views of carers themselves as a way of illustrating the issues providers need to be aware of when developing carers’ services online.

Ultimately, I hope the report gives readers the experience I had in the focus groups when I realised the necessity of offering choice to reach more carers, and the importance of consultation – even when you think you already know the answers.