Before explaining where I’m going after nearly 2.5 years of these blogs, I feel that I should tell you where I’ve come from and how I got here.
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
The results are in! In my last post, I asked people to answer five questions about social care in England because I had a hunch that what people thought would be different from reality. In fact, perception was the complete opposite of reality.
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.
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.
Note: The following blog post is by guest blogger Carita Thomas who is a member of Young Legal Aid Lawyers.
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.
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.
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.
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.
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.