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 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

Cameron, Clegg and Milliband agree to social care reform talks

Trekkies love it when Captain Jean Luc Picard (Patrick Stewart) orders in a commanding, deep voice “make it so” and in an instant his crew set to work. Mistakenly, we often think that politicians have similar power.

Paul Burstow MP, Health Minister, honestly wants the NHS to do more to support carers. He thought providing additional money (£400m) and requesting the NHS to work with carers’ organisations on plans and budgets would provide this. Of course,  our report showed that this has not happened. Burstow told us at the Lib Dem conference that he was upset at this, was trying to improve the situation and will give even stronger guidance that the NHS has to prioritise carers.

But he cannot make the NHS do this because they have local decision making powers and no one person can control everything that happens in an organisation as large as the NHS.

The Government is actually structured so that power is shared amongst many people – Prime Minister, the Cabinet, MPs, Lords and other advisers. Some hold more than others, but each have some power with nobody having absolute power. And they all have their own priorities fighting to be the one Government acts upon.

This is why Burstow has appealed for disabled people, carers and charities to get angry and make a racket of noise regarding social care reform following the Dilnot and Law Commissions’ recommendations. He wants reform and says that he will be angry if the Lib Dems does not make this a priority.

Norman Lamb MP, chief adviser to Nick Clegg, said he wants social care reform in this Parliament and that any reform must mean more money for social care. However, his message was that it will only happen if politicians keep hearing from the public that reform must happen. Otherwise it will slip down the list of priorities.

Cameron, Clegg and Miliband have agreed to cross party talks on social care reform. This is a good start but only a start. The Government have announced another listening exercise for the reform of social care. This can either be used to build consensus on future reform or delay the need for a decision pushing reform further down the list of priorities.

Burstow and Lamb understand the urgent need to reform social care but not everybody does. I was left aghast when John Hemming MP (Lib Dem) said he did not see the connection between reforming social care and helping workplace productivity and employment, despite having just heard from John Lewis Partnership that more and more people are struggling to combine work with caring because support from social services is lacking.

We have to realise that for some, social care reform is not an issue or a priority. We need to change that. We need to make sure leaders and MPs from all parties hear how important it is to millions of people. It’s time to make some noise.


September 21, 2011 Posted by | Carers Strategy, Conservatives, David Cameron, Liberal Democrats, Party Conferences, Social Care | , , | 10 Comments

Paul Burstow is serious about supporting carers

It was about primary 4 when I got the letter. I’m sure it even had her scent on it. It was smuggled to me in between

Paul Burstow, Carers Minister

practicing our times tables but I don’t think I could have added 2 plus 2 after I received it. What a feeling!

It obviously wasn’t the greatest love letter in history, but then again the Department of Health are not known for their letters of love. But I have recently fallen in love with one letter from them.

It was sent to each Strategic Health Authority (SHA) which monitor the performance of Primary Care Trusts (PCTs). It asks SHAs to confirm with the Government by 2nd September that each PCT has published local plans regarding services to support carers. Missing this date would be understood only in exceptional circumstances.

Furthermore, SHAs must make sure that PCTs (apologies for the acronyms!) have taken into account the Government’s updated Carers’ Strategy which provided an additional £400m for carers in PCT budgets. Sometimes, you wonder what takes Government so long to act but in this case the Health Minister Paul Burstow MP must be applauded for taking immediate action.

On 12th July Rob Wilson MP asked him about his local PCT not engaging with his local Carers’ Centre to develop plans for carers as they were meant to. On 14th July, we published our report which showed that only 9% of PCTs had so far published updated plans and 37% were not planning to.

Paul Burstow and civil servants must have immediately discussed what they could do to improve the situation and drafted the letter that was sent out 27th July. Supporting carers is an issue that Paul Burstow is serious about and this episode shows his determination to improve support for carers.

We have already heard of instances where PCTs are responding and are now engaging with carers’ organisations to develop plans and budgets. I’m glad, because the clock is counting.

To make sure the PCT acts in your area, we’ve set out 5 easy steps to persuade your PCT. Carers are getting breaks in Richmond, Sunderland, Surrey and other places – let’s make sure carers all over the country get them.

Take action


August 3, 2011 Posted by | breaks for carers, Carers Strategy, Health, Social Care | , , | 12 Comments

Should Dilnot recommend compulsory care insurance?

The Dilnot Commission will report next week on how social care in England should be funded. Currently, if you have assets, including property, worth over £23,500 you will likely pay for social services or residential care. This means a lot of people pay for all of their care whilst some pay for none of their care.

Dilnot is charged with finding a system that will create a “fairer” system that will also encourage people to save for care that they may need. The focus will be on encouraging people to purchase insurance to cover future care costs.

The choice comes down to a voluntary insurance scheme or one where everybody has to purchase care insurance – just like all car drivers must purchase car insurance. Or there could be a voluntary scheme where people are automatically enrolled into it but can opt out.

Politicians will then be left to choose, if they choose to do anything. But what hasn’t appeared in the debate so far, is the role of genetics.

Having a certain genetic profile can make it more likely (but not certain) that you suffer conditions such as Huntingdon’s disease or Alzheimer’s. However, your behaviour can also reduce the likelihood of these so knowing your genetic profile could encourage you to change behaviour and reduce the chance of having various conditions.

Knowing can also help you and your family prepare, which is what one person felt when faced with this experience who I was talking to recently. And genetic profiling will become much more common in the future as costs rapidly decrease.

The impact of this on a care insurance market are obvious. In a voluntary insurance scheme, if you don’t have to share your genetic profile with insurance companies, those most at risk of ill health will take insurance but companies won’t know who has the greater risk so all prices will go up, fewer people will take insurance and insurance companies will leave the market. And in a voluntary system where you do have to tell the insurance company, there could be lots of people who will be refused insurance. They will be discriminated against because of their genetic profile.

However, in a compulsory insurance model where you don’t have to tell insurance companies, people will still be able to know their genetic profile and plan for the future but without fear of discrimination, and insurance companies could spread the risk and costs amongst a greater number of people.

Interestingly in 2003, the Department of Health declared: “As our understanding of genetics advances, the case for private health insurance as an alternative to our universal tax financed NHS diminishes”. It may be the same should apply to social care as well.

June 28, 2011 Posted by | Carers Strategy, Social Care | , , , , , , | 4 Comments

Carers do meet the social care needs

You may have seen media reports last week about 800,000 people not getting help with social care. This was based on an Age UK report that estimated there were 2 million older people in England with care related needs and 800,000 of these were not getting formal support from public or private agencies.

The widespread media reports implied that there were 800,000 people whose needs were not being met and levels of ‘unmet’ need is a cause for concern amongst politicians and decision makers. Of course, one of the biggest worries has been that if people are not being supported by councils or other agencies, then how do you know how many of them are there? This is a problem facing the Dilnot Commission which is considering the future funding of social care in England.

The answer of course lies with carers. Because we survey who is providing care, then you can work out how many people have care and support needs.

Going from the census 2001 and last year’s household survey, there are approximately 4.8m people providing care in England. The household survey found 37% were sole carers and 63% were sharing it with another person. This would equal approximately 3.2m people with care and support needs being supported by carers in England alone. Plus, there would be adults being cared for by young carers that were underestimated in the census and not covered by the household survey.

It is not that needs are going unmet, they are being met, just not by people who are paid to do so. The vast majority of need is being met by carers. They are the ones who are there when social services or private care agencies are not.

When we launched our Give Carers a Break campaign, Peter Hay, President of Association of Directors of Adult Social Services addressed the politicians and carers involved. He said that because it is carers who are the first ones providing care and we rely on them so much, then the NHS’s £400m for carers has to be spent on carers and prioritised first ahead of other needs.

Take care


PS: Carers need continued support. Don’t forget to tune-in to BBC Lifeline’s appeal for carers on BBC One on June 19th at 4:45 pm (if you are in Scotland, Wales, Northern Ireland) and 5:15 (if in Scotland). Please do spread the word.

June 6, 2011 Posted by | breaks for carers, Budget, Carers Strategy, Social Care | , , , , | 1 Comment

Carer Votes Count in Scotland

Note: The following blog post has been written by Lynn Williams, the Policy Officer (Scotland) for The Princess Royal Trust for Carers.

So a few weeks into the election campaign in Scotland and already the issues affecting Scotland’s 657,000 unpaid

MSPs pledging support for carers

carers have featured in most party manifestos as well as in the press. The BBC “Big Debate” on Living Longer had carers in the audience – Caroline gave a very moving insight into her journey as a carer for her parents.  The launch of specific manifesto pledges for unpaid carers by the SNP at the Glasgow South East Carer Centre also picked up some coverage.

Before looking at what parties are committing to (and we know that a commitment doesn’t necessarily mean that something will actually happen!) it’s important to review where we are first.

Over the last four years, political parties have delivered a lot of warm words about the contribution of unpaid carers – and young carers.  There have been some policy gains in the last four years around additional investment in respite, funding which has benefitted the work of carers’ organisations, and the publication of the new Carers and Young Carers’ Strategies in Scotland. So, some good news.

What is becoming increasingly clear however – from contacts on Facebook (See our Carers Votes Count Facebook pages;  from feedback from Carers Centres who are on the frontline and from colleagues in other carers’ organisations is that unpaid carers and their families and are at the hard end of local cuts. The campaign pages for Scotland ACT Now for Autism provide stories from across the country and parent- carers open their hearts about the daily fights they endure for their children.

This is before we even get to the impact of the welfare reform agenda coming from Westminster to a town or city near you. So from the perspective of Scotland’s carers and from the perspective of The Princess Royal Trust for Carers – warm words are fine; promises are fine – but it’s now time for action.

So what are the parties actually saying? We have published summaries of the four main Scottish parties’ manifestos and the pledges that they have made.

So what does this all mean?

The answer is – not a lot. But manifestos give some indication of the level of commitment to unpaid carer and young carers. They can also help carers to decide who to vote for especially if they remain undecided.

What happens after the election is more important – what commitments actually become reality and do they make any REAL difference to the lives of carers such as Clare Lally, Sandra Webster, Teresa Catto Smith and others who are regularly posting on our election Facebook pages – Carers Votes Count.  Their stories tell us that the political parties still have a long way to go.

A number of carers have told us that they remain undecided as to how to vote and that they want to see specific pledges which will help improve their lives.  There may well indeed be up to 657,000 votes up for grabs! Therefore, until the next election blog, please continue to lobby your candidates, attend any local hustings events and please contact us here or via Facebook with the issues that affect you as carers or young carers in Scotland.


April 19, 2011 Posted by | Benefits, breaks for carers, Budget, Carers movement, Carers Strategy, General Election, Scotland | , , , , , , , | Leave a comment

The Number 10 Experience

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

“The Prime Minister requests the pleasure of your company…” came the invitation. What an opportunity to get carers Number 10issues noticed right at the top. So on Wednesday morning, determined to give it my best shot, I walked up Downing Street, said good morning to the policeman and  rang the brass doorbell. The door swung open ominously….

Around twenty charities were  invited to give their views on NHS reform. Some big household names, some tiny – a real mix, but few others with a real carer focus. Lansley opened the debate, later joined by Cameron and Clegg.

The Coalition Government is clearly in trouble with its health reforms, and I have to say I can’t see what’s in it for carers. They say it’s not about privatisation, but unless more thought goes in, the competition it will allow will end up with a focus on price rather than quality. You can’t provide decent carer’s services on tuppence ha’penny. It also means charities end up competing against each other – exactly what we want to avoid. And changing the boundaries of health consortia and making these different from local authorities will make it a lot more difficult to join up all the different services which are needed to support young carers and families with complex needs.

About an hour into the meeting, I took my chance.  I caught Andrew Lansley’s eye – he looked at me and nodded. Gulp. In what felt like slow motion, Cameron and Clegg turned and looked at me. Carers have been absent from the debate so far, I said, and you need to remember our vital role. With some notable exceptions, GPs often forget all about carers  and carers organisations. We need joined up working, and services which work together to support families  to make sure vulnerable people don’t  fall through the cracks. The Bill needs to help this happen, not hinder this.

They nodded and asked more about GP practices working with the voluntary sector. The GP present agreed that primary care sometimes forgets anyone else exists. They agreed the Bill needs changes to give more indication of how local arrangements should work but didn’t agree that consortia boundaries will make things difficult. As he left, the Prime Minister, said we will all need to work to make health and wellbeing boards effective, “to do things like making sure carers get the right kind of support”.

I think there are real problems with the Bill. I think there is a massive risk of carers being forgotten about in decision making processes. There may be opportunities for the voluntary sector, but if it comes down to price we will all lose out. I said my piece. They said they were listening. But did they hear?

April 15, 2011 Posted by | Carers movement, Carers Strategy, David Cameron, Social Care | , , | 6 Comments

No Health without Mental Health

Note: The following blogpost is from a guest blogger, Ruth Hannan, Policy and Development Manager (Mental Health) at The Princess Royal Trust for Carers

Many carers waited on the government’s new mental health strategy “No Health without Mental Health” with baited Mental Health Strategybreath to see how significantly carers’ needs would be included. So it was with a little cheer (I was on a train at the time) that I saw that the Triangle of Care had been placed at the centre of the government’s commitment to supporting carers of people with mental ill health.

The Triangle of Care, as a joint publication with the National Mental Health Development Unit, and The Princess Royal Trust for Carers establishes best practice guidelines for engaging with and supporting carers in an acute care setting, however, there is no reason why these principles can’t be rolled out across mental health service provision field whether it is statutory, third sector or private. David Behan (Director General for Social Care, Local Government and Care Partnerships) in a webchat we recently hosted emphasised the importance of the Triangle of care in securing on-going improvements to local services.

The new mental health strategy reflects the government’s wider radical changes to NHS service provision, clearly including the community focused “Big Society” ideas and more importantly the move to GP Consortia commissioning.  Payment by Results, GP Consortia commissioning and the personalisation agenda present some of the most radical changes in mental health service provision for a number of years and it is as yet unclear how well these will work for people with mental health problems or their carers.

Focus on the Triangle of Care, whole family working and those with more complex needs are clear positives for carers. However, the significant economic cuts currently being implemented may prove counter-productive to these principles. In addition, carers’ issues are not central to the strategy. The main reference to carers is primarily linking to the refreshed carers strategy, rather than considering the particular needs of carers of people with mental health problems or any new or innovative ways forward.

Many Carers’ Centres are already working on developing Triangle of Care services either individually or in partnership with their local mental health trusts. Government’s support for The Triangle of Care will add weight to existing work and support centres who have been trying to engage with local providers. We will seek continued Government support to embed the Triangle of Care in mental health.

The emphasis on reduced government support and increased local responsibility and funding is a concern for many Carers’ Centres, as cuts to statutory services are already affecting service provision. Further cuts may mean already oversubscribed services will need additional support to manage the more complex needs of mental health carers.

There is a concern that GP commissioning may overlook those with the most complex which could affect services available to those caring for someone with the most acute need. We will work to make sure that carers’ needs are included in all mental health decision making at local, regional and national levels.

Further Information:

David Behan joined for a Mental Health Strategy webchat – find the chat transcript here

April 13, 2011 Posted by | Carers Strategy, Health, Mental Health, Social Care | , , , , | 4 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