Carers breaks – where is it working?

You wait on one for ages, and then two come along. Not long after Sunderland PCT announced over £600,000 to support carers, NHS South West London and the London Borough of Richmond upon Thames have pledged £281,000 to give carers a break this year. Some of the projects funded will also provide counselling and debt advice projects, respite breaks for older carers and a mental health carers information project. 

Unsurprisingly, there is a strong carers’ voice in Richmond with a Carers’ Forum that meets quarterly, an annual carers’ conference, a survey and a Carers’ Strategy Reference Group which brings together the council, the Primary Care Trust with charities such as Richmond Carers’ Centre and Crossroads Care Richmond.  Caroline O’Neill of NHS South West London Richmond Borough Team was clear that working with local carers and carers’ organisations and influenced their decisions.

“We are committed to ensuring that carers are supported by both the health and social care services provided for them and those they care for.  We are proud of our partnership approach working closely with local authority colleagues and local carer organisations to deliver for carers.”

This theme of local authorities and PCTs working with charities was also pinpointed by Melissa Wilks, CEO of Richmond Carers’ Centre:

“Strong local partnerships between Health, Social Care and the voluntary sector are vital to making a difference to carers lives.  Richmond Carers Centre welcome this approach and the investment in short and long-term support for both adult and young carers.”

Both Sunderland and Richmond have strong local carers’ organisations and carers who are used to talking with local decision makers about the support that they need and how things can be improved. But there are some areas that do not have well-funded local charities doing this and there are some councils and PCTs that are not engaging with carers or carers’ organisations.

The Government’s idea of local communities being active in decision making is partly dependent on have strong local charities who are involved before decisions are made and finalised. Government has asked each PCT work with local carers’ organisations to develop plans and budgets, so we have been researching whether Richmond and Sunderland are the norm, or are just the exceptions.

 We will be publishing our findings on Thursday 14th July  and you can read about it here.

Take care


July 11, 2011 Posted by | breaks for carers, Uncategorized | , , , , | 2 Comments

Sunderland pledges to give carers a break

The Princess Royal Trust for Carers and Crossroads Care launched our campaign to Give Carers a Break in May and since then many Carers’ Centres and Crossroads Care schemes have been working hard with their local Primary Care Trust (PCT) to increase investment in support for carers. Primary Care Trusts and your local NHS, have been given £400m by Government to improve support for young and adult carers, but the money is not ring-fenced so can be spent on anything at all. We fear that many PCTs will choose to spend the money in areas other than supporting carers.

However, there are some PCTs who are showing that even in such tight financial times, increasing support should be a priority.

After working closely with Sunderland Carers, Sunderland Primary Care Trust are investing £630,000 this year for extra services to give carers the support they need and deserve.  Penny Davison of Sunderland PCT explained that supporting carers was key to the care of people with disabilities and long-term illness when she said:

“We value and recognise the huge contribution carers make to caring for friends or relatives who may be disabled or seriously ill. We have seen the benefits that providing short breaks to carers can have on their health and wellbeing and are keen to ensure that carers can access a range of quality services that will support them in their caring role.”

Ailsa Martin, Chief Executive of Sunderland Carers’ Centre, has been instrumental in working with the PCT to put this plan together and believes more carers will get support earlier helping them to maintain their own wellbeing.

“We want to reach carers at any early stage, preventing unnecessary. This extra investment enables us to provide new services, including group breaks for isolated carers who may be didn’t take breaks previously because they had no one to go with.”

The NHS is facing tough times but Sunderland PCT has shown carers should be a priority. Using the money allocated to them by Government, they will help carers maintain their own health and that of the people they are caring for. The whole NHS needs to follow the lead of Sunderland PCT and Ailsa is right when she advises that “ Sunderland PCT and NHS South of Tyne and Wear should be applauded for their commitment to carers.”

Do leave comments about what is happening in your area, and whether there is something to applaud or something to be angry about. You can get involved in our Give Carers a Break campaign by sending letters to your MP or councillor asking them to make sure your PCT follows Sunderland’s lead.

Take care, and action (!)


July 1, 2011 Posted by | breaks for carers | , | 4 Comments

Carers show the true face of caring

A few years ago, Karen gave up work to care for her husband full time. She wanted to work part-time and care but her

Young carer helping his brother

employer was not willing to consider reduced hours. Plus, health and social services calculated that it would cost £160k p/a to provide a care package to meet all of his needs. The cheaper option was to leave the care to her and provide £5k worth of support.

Karen’s husband has a degenerative condition which does not directly cause early death. She pointed out that he could live for another 28 years but that there would be no chance she could carry on that long. She feels that she is being run into the ground and exists to provide care.

For about 90 minutes today, Karen shared her story with Rory Stewart MP, Peter Aldous MP, Laura Sandys MP, Cathy Jamieson MP, Andrew Bridgen MP, Stephen Mosley MP, Jonathan Lord MP and Tracey Couch MP.

James (aged 19) and Samuel (aged 15) were also there speaking to these MPs. Both care for their mothers and have done so for many years. Their message was simple:

  • GPs need to think about who is looking after their patient at home
  • schools have to realise that pupils can be young carers which affects their school work
  • local young carers’ projects can provide vital support

These were young men who were speaking matter of factly about what they do, the impact on their own lives and what more should be done. It always strikes me how mature young carers can be when discussing their situation. Afterwards, we walked around London to see Buckingham Palace and Trafalgar Square, and they  talked about their interests and futures. This should be a time of choices for both.

Karen didn’t seem to have many choices; the map for her life had already been drawn. Her story illustrates why many carers feel taken advantage of and taken for granted.

The galling thing is that Karen could be considered a lucky carer as she might get a personal budget of £500 this year as a result of the Government’s £400m injection into the NHS for carers. Very few carers get a personal budget (fewer than 50,000 in 08/09) and if they do it is usually for approximately £250. So Karen could nearly consider herself a model of how the extra money is providing extra support. But as she pointed out, her £500 will still only provide one hour off every fortnight.

This is not the change that carers need. This can only just be the start or we will leave James and Samuel with no choices, and no chance.

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 14, 2011 Posted by | Benefits, breaks for carers, Carers Week 2009, Relationships, Young carers | , , , , , , , | 3 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

Give carers the break they deserve

I need to ask you a favour.

In 2009,The Labour government did a good thing by including £50m in allocations to English Primary Care Give Carers a BreakTrusts  (organises your local health services) to increase support for carers. In 2010, they included £100m. These were good policies let down by poor implementation as our research showed only 25% of the total £150m was used to increase support for carers.

The new Coalition Government has built on the good policy by including £400m over 4 years in the allocations to PCTs to focus on providing breaks for carers. They have also requested that each Primary Care Trust works with local authorities and carers’ organisations to publish policies, plans and budgets to support carers. This is important because it means PCTs can be held to account for how they spend the £400m.

But this is where I need your favour.

In this era of local decision making, it is local people who must hold PCTs to account. It is local people who must ask their PCTs whether they have spoken with carers and carers’ organisations about providing breaks. It is local people who must request to see the PCT’s policies, plans and budgets to support carers. And if you don’t get answers from your PCT, write to your MP and councillor or visit them at their surgery and explain to them why you are concerned that your PCT is not doing what it should to support carers.

It doesn’t matter if you’re not a carer, I still need this favour from you. And with one in ten people currently providing care and three in five people becoming a carer at some point in their life, it is likely that whether your PCT uses this money to support carers or not may affect you or your friends and family now or in the very near future.

I, and over 5 million carers in England, need your help to persuade PCTs that breaks for carers are not a luxury; that they are desperately needed by people who sacrifice so much to care for others that they often reach breaking point, jeopardising their own health and are simply crying out for some help and a break.

Yesterday in Parliament, we launched a campaign supported by MPs from all parties called Give Carers A Break. Our website has information on this campaign and how you can get involved.

Please, help us to give carers a break.

Thank you


Further Information:

May 24, 2011 Posted by | breaks for carers, Budget, Young carers | , , , , , , | 7 Comments

The Alternative Vote (AV) and Carers

I nearly did a PhD in politics once. I was going to study why people don’t vote, with one of the potential reasons being that people who don’t vote feel a lack of influence over their representatives and how they act when elected.

Proponents of the Alternative Vote (AV) system, being voted on in the referendum, say it would partly address this. They say that because some people may feel demotivated to vote in constituencies where there is only one or two likely winners if their preference is for somebody very unlikely to win. They have also been arguing that because AV increases competition, it motivates MPs to pay greater regard to their constituents when elected as their re-election will be less likely guaranteed.

The third argument is they offer is that currently some people feel forced to vote for one candidate to keep another out, even though their preference is for a third candidate. AV should enable that person to vote as they truly believe, for the people they want in Government and as the argument goes finding out people truly think may lead to a more representative government and Parliament.

There has also been a vigorous no campaign which has been arguing that the system would be more complicated because people can rank up to three candidates (you could still just put your first preference only if you wanted).

They also point out that it may make coalition governments more likely as parties other than Labour and Conservatives could win seats making it harder for one party to win an overall majority in Parliament.

Important questions, and the real shame will be if few people vote.

Fewer people vote in local elections than in national elections too, thought to be due to people thinking they are less important. Yet, when localism is the order of the day and local government assumes more responsibility for decision making, who you vote for will have a large, and growing, effect on your lives.

The shame is that even those who do vote often vote according to their view of national politics and political parties, when the local policies and people can be quite different. The UK Government has focussed its cuts disproportionately on funding to local government in England, and because of this we have come to realise what a large role local government has in providing services that we value and need in our lives every day.

National politicians seem to believe that the population want local solutions to local problems. This may be correct and I hear this from people quite often. However, if it is true and we do want local solutions to local problems, then we must take on our democratic responsibility to get involved in this and vote for those people who will be making those decisions on our behalf.

And if you don’t then you may find that the school you send your kids to, the library you get books from or pool you go to, the roads you drive on, the shops you buy from, the recycling bins you use, and yes, even the Carers’ Centre or Crossroads Care you get support from may not be there anymore.

Take care to vote

May 5, 2011 Posted by | David Cameron | , , , , , , | 4 Comments

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

Goodbye Carole!

The same day as the service commemorating the coming into effect of the Chronically Sick and Disabled Act 40 years

17 years of dedication to carers: Carole Cochrane

ago (see prev blog), staff of The Princess Royal Trust for Carers gathered to pay tribute to Carole Cochrane, who has just finished being Chief Executive.

It was back in 1994 that Carole became Chief Executive of a Carers’ Centre in the North-East of England and for seventeen years she has dedicated her life to improving support for carers. I do mean dedicating her life. You will see from her previous blog that even when on holiday, the needs of carers rarely strays far from her foremost thoughts.

In a goodbye speech she made the other night, she said that she has been proud to wear the badge of supporting carers. And that badge was always on because quite simply she cared about carers, their individual stories, their specific problems and how she could help them. Borne from her own experience, Carole connected with carers immediately and of all the things she had to do as a Chief Exec, she never looked happier than when speaking to carers.

Her favourite times were probably organising the week’s holiday for 1200 carers from all over the UK at Pontin’s in Blackpool. An idea of giving some carers a break in Pontin’s was turned into the most unbelievable week I have ever witnessed. Carers came from all over the UK – its most far flung corners – to enjoy a week of entertainment, fun and solidarity. I remember my first time there witnessing carers stream in expectantly and excitedly. It was Carole who turned this idea into a logistical reality.

The challenge of being Chief Executive of The Princess Royal Trust for Carers should not be underestimated: 150 Carers’ Centres to support and keep relations with; other charities to coordinate and work with; staff based across the UK to keep connected and involved; a wide range of supporters to be kept engaged and motivated; politicians to prompt and persuade; all the other innumerable things that goes along with running an organisation. And all this whilst trying to spend some time with her family at home in the North West.

We have lost a leader but keep a friend and lifelong supporter. And Carole’s greatest legacy is that while we will miss her, her leadership may not be missed. In the film Casablanca, the resistance leader Victor Laszlo responds to Nazi threats that it does not matter if they kill him because if they do there are thousands ready to stand up, take his place and lead the fight. Without being too melodramatic, the same is now true for Carole. Because of the work she has been doing since 1994, there are now thousands ready to stand up and take her place to lead the fight.

Carole, thank you.


March 31, 2011 Posted by | breaks for carers, Carers movement, Social Care | , , | 1 Comment

Can volunteers be equal to professionals?

Along with various other charities, I was at a meeting with the Department of Health to discuss the Government’s

Carer pushing wheelchair

upcoming vision for volunteering in health and social care.

One of the first things raised as being most important was that we should treat volunteers like professionals. They should not be viewed as being of lower standard and they and the roles they do should be treated seriously. We all say aye.

Later, and separately, it was pointed out that many people are put off volunteering for organisations because of processes they have to go through. They may have to complete forms about their interests, skills, employment history or go through a Criminal Record Bureau (CRB) check. Some charities will ask for references.

Some said that potential volunteers can be put off by this, maybe even offended that so many questions are being asked of them, when all they want to do is help out a couple of hours a week. Ah yes we all said, this is definitely a problem.

But is this not treating them and the role they will do as equal to paid staff and their roles?

The Princess Royal Trust for Carers and Crossroads Care have campaigned for carers to be treated as equals to health and social care professionals. What they do can be highly skilled and requires training and experience. Again, aye to that.

But we also campaign for friends, relatives, neighbours or volunteers to help carers (if the family want it) because carers can often be struggling alone without any help. This seems reasonable to most.

But by saying you have to be trained and skilled to provide care, are we discouraging people from volunteering to help? Do we encourage the thinking amongst people that there is nothing that they can do?

Now the following facts may be not be caused by such contradictions highlighted above, but they are surely related.

In the Household Survey of Carers 2009/10, 66% of carers said they would need a friend or relative to look after the person they care for if they wanted a break overnight. Of these carers 42% had not actually ever managed a break of two days since they started caring and 16% of carers said that they had nobody they could turn to who would help them take a break.

Now some will say that friends or family or volunteers shouldn’t be the ones providing help, we should be using paid care workers, but that only highlights the hypocrisy of saying that volunteers should be treated equal to professionals. To me, these statistics show there is a need, but I’m not sure how well we’re helping carers to meet that need.

Take care


March 18, 2011 Posted by | Big Society, Relationships, Social Care | , , , , , , , , | 1 Comment