Equal Access to Self Directed Support for Carers

Note: The following blog post has been contributed by Florence Burke, Director of Scotland.

Going to bed at 9 pm and waking up at 11:30 am…

For many carers, the idea of sleeping that long sounds like a dream come true. Fourteen hours of solid, health-restoring sleep with the only interruption being a quick trip to the loo, instead of frequent awakenings to care for someone.

On this occasion, though the person going to bed at 9pm wasn’t going there through choice. He’s paralysed from the chest down and the agency workers looking after him could only come to put him to bed at 9pm. The next day, 11.30am was the first available slot to get them out of bed. But self-directed support has now transformed his life through employing a personal assistant who works around his needs and wishes. Flexibility of choice is what service users want from self-directed support, but what about their carers? Don’t they deserve flexibility too?

The Scottish Parliament’s Health & Sport Committee publishes its response to stage one of the Social Care (Self Directed Support or SDS) (Scotland) Bill this week (6 July) at The Princess Royal Trust Glasgow South East Carers Centre, one of our Network Partners. The publication of this report follows wide-spread consultation with carers to find out what they think.

We’ve been working closely with carers and carers’ centres in Dundee and Dumfries & Galloway and across Scotland to highlight where carers and their needs fit into the bill. We’ve fed back to the Health & Sport Committee and said:

SDS must not be put in place alongside cuts – local authorities need to take full account of the cost of supporting people with carer needs AND their carers.

Assessments need to have a goal of improving lives for the person being cared for and their carer – they must take both persons’ situations into account.

Training should be provided to carers so that they can understand SDS and what is on offer. Carer workers at present receive training – unpaid carers do not. This means they are not equal partners in care, a phrase often bandied about as a goal statutory services should acknowledge.

Information, information, information… Carers need access to the right information about SDS and what options are available so that they can make the choices that will suit them best.

Finally, carers feel is grossly unfair to make SDS for carers subject to financial assessments. SDS can help carers continue to care – and unpaid carers ultimately save the public purse more than £10 billion in Scotland. So why should they charged for support that can help them take breaks, prevent their own ill-health and allow them to continue caring?

We and carers feel that offering SDS to carers should be a duty on local authorities and not a power. We don’t want a Scotland where some carers have no problems accessing SDS and others fight battles for it. It’s great that carers and the specialist support provided by carers’ centres is being acknowledged at the launch of the report but equal partners in care, continues to be our aim – let’s make that the reality.

July 3, 2012 Posted by | Carers movement, Scotland | , , , , , , , | Leave a comment

Tweeting the terrific #twobby

Yesterday was one of those amazing days that makes you glad to be alive.

Down at Westminster, around 1000 people – disabled people, older people, carers, family members, friends , and supporters of charities, took their message to MPs on social care reform. The issue is hard, and the care problems that people experience are painful, but the message was upbeat, positive but determined. The place was buzzing and it was all about people having their voices heard. End the Care Crisis now.

@CarerWatch Care reform must succeed where welfare reform failed #twobby

We’ve been told we’re too quiet and we don’t make enough of a fuss. So yesterday, folks, was our chance to make that fuss and we did that, in person and online.

The Care and Support Alliance had been planning this mass lobby on care reform for months, and we wondered whether people would come out and support us. For carers, it’s difficult. Many can’t come to Parliament because they are busy caring for someone ( stands to reason really). But we needn’t have worried – people came in their hundreds and it was fantastic to see.

@CarersTweets: Hundreds of carers and disabled people lobbying at parliament today. Great to see you all! #carelobby2012 #twobby

The sight of busloads of older people, people using  wheelchairs or with walking sticks, people with guide dogs, people on their own or in groups,  descending upon Westminster Hall, to a slightly nervous looking bunch of MPs who must have been  wondering quite  what they had let themselves in for, was inspirational.

@richmondmencap just arrived at care lobby … hope to see vince cable… good work everyone… lets stand together #twobby

But this time we hope people who couldn’t make it weren’t disadvantaged  because , through the miracle of modern technology, a new phenomenon happened. Campaigners tweeted their messages to their MPs , or the lobby teams sent them on, and so the Twobby was born! Message upon message upon message telling the story of the day – if you’re a twitterer go online and look for #twobby . I tweeted too! You can find me twittering on @CarersTweets

@DisRightsUK we’re taking part in the world’s first ever #twobby to tell MPs the care system is in crisis #twobby

We think about two thirds of MPs were lobbied yesterday. Thank you everyone who came or tweeted and made it such a success. And thanks , too, to the MPs who came to meet their constituents.  In his Q & A session with campaigners at the end, the Minister for Care Services, Paul Burstow , acknowledged the massive support and said it’s the biggest lobby he’s seen in 15 years . That’s an incredible achievement. We just need to wait and see if it helps us get the outcome we need.

@carelobby2012: ‘We will produce a white paper that genuinely reflects the opinions of people here today’ Paul Burstow #twobby#itsastart

It’s  not too late to write (or tweet) to your MP if you couldn’t make it. This is a problem that won’t be solved in one day. I hope  everyone who came had a terrific time – and  I know you enjoyed the cups of tea!

@age_uk While pausing for a quick cuppa and a cake, we’ve just learnt that some 1000 cups of tea have been supped here at the care #twobby today!

Well I’ll drink to that.


March 8, 2012 Posted by | Carers movement, Social Care | , , | 2 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

Recognise and prioritise the role of carers

This blog was written by Carole Cochrane, Chief Executive at The Princess Royal Trust for Carers

Today is the first day of my last month as Chief Executive of The Princess Royal Trust for Carers. I have worked with and for The Trust for over 17 years so it is with a real mixture of feelings that I am writing this blog.

Mother and son outside Carers' Centre

You cannot do a job like this and just walk away

When I started back in 1994 it was to establish one of the first Princess Royal Trust Carers’ Centres. Those were such exciting times filled with hope and aspirations.

In 1995 we had the Carers (Recognition & Services) Act.  This was the first piece of legislation that really recognised the role of carers, their needs and the benefits of ensuring they have support in their own right.

Malcolm Wicks MP did a great job pushing the bill through and I remember so well the feeling of elation that we now had something on the statute books about and for carers. I also remember a feeling of frustration that no money came with the Act. Good local authorities were already looking at ways to support carers!

I remember working with the head of the local social work team to train all their staff on the contents of the Act. This proved to be a brilliant opportunity to form real lasting relationships between the Carers’ Centre and the social work team, and between social workers and the carers who helped with the training.

I was extremely proud that following this training the Carers’ Centre was no longer seen as a place to avoid, but rather a place for social workers to turn to for information, advice and support. The Trust was able to grow and between us we delivered some real ground breaking support.

There have been a few significant pieces of legislation passed since then, including the Carers and Disabled Children Act 2000 and The Carers (Equal Opportunities) Act 2004, and I am sure there will be further development to ensure carers’ rights regarding access to accurate and timely information, emotional and practical support, and respite breaks.

Some things have changed for the better since 1994 but some have not.  My fear as I leave is that in these austere times the much needed support for carers may get watered down and what I still to this day believe is a fantastic model of local carers support services will be diluted.

Having witnessed first-hand the difference our network of local carer services can make to the lives of carers and those they care for I truly hope that this is not the case.

Last year in the run up to the elections  we saw all of the main party leaders speak about the need to support carers and of the fantastic work that carers do. Mr Cameron and Mr Clegg, remember your words and stay true to ensuring carers do have the support they need to fulfil their caring roles and be able to be full citizens of the UK.

Leaders of parties in Scotland, Wales and Northern Ireland must also prioritise carers and I know colleagues are working to push this in preparations for upcoming elections there.

So as I reach my final weeks with The Trust what will I miss?  When my children were young and when I cared for my husband, work had to be around these very important roles so lots of part-time, evening and night working.

For the past three years I have spent most of my working week travelling and being away from home, and I know I won’t miss that.  But I will really miss the camaraderie of colleagues, network members, and carers’ organisations that I have worked alongside to try to improve the lives of carers.

I will miss the engagement with carers.  Meeting carers whether at Pontin’s when we did the carers breaks there; at Carers’ Centres or conferences and other events has always kept me both grounded and focused.

I will miss working with our President HRH The Princess Royal who I have found to be extremely supportive and knowledgeable about the cause, and incredibly hard working.

You cannot do a job like this and just walk away. Although I am not sure how, when or where, I do know that I will continue to watch what is happening and continue to do whatever I can to influence better support services for carers.

March 1, 2011 Posted by | Big Society, Carers movement, General Election, Law, Northern Ireland, Scotland, Wales | , , , | 5 Comments

Older Carers: the twinkle in her eyes

Note: This blog post coincides with an older carers survey that is running until 31 March 2010. If you are aged 60+ and are an unpaid carer for a loved one, we would really appreciate your response to the survey.

There are some people who you meet that stick in your head. A few years ago I was taking a supporter to our Carers’

Centre in Sandwell. It was the Centre’s 21st birthday party and Her Royal Highness Princess Anne was there to cut the cake.

I began talking to an elderly woman who was about the size of Tinkerbell in the film ‘Hook’. She seemed to sparkle like her too as her eyes twinkled and had a smile that never left her face. She was there with her husband who had just had two heart attacks, and they had cared for their daughter for fifty years since she was born with learning disabilities.

I looked at this woman in awe. I jokingly suggested that how could a woman her age have a daughter who was fifty?!?! She replied that it was her 80th birthday in a few weeks’ time that March.

Speaking to her and her husband, she told me the hardest thing was when her husband was rushed into hospital in the middle of the night and she had to decide whether she stayed with her daughter or get in the ambulance with her husband. The smile was still there when telling me all of this.

She wasn’t complaining, she was just explaining some of the issues she faced. She wasn’t annoyed or angry; I’m not even sure she felt that she needed support. I was standing there in awe of this 80 year old woman who had cared for her daughter for fifty years and was now caring for her husband but amidst this appeared to be the happiest little thing in the world. I was twice her height but felt a much smaller person.

She is not alone, there are lots of older carers out there who might not be asking for help but may certainly benefit from some. It would not surprise me that the woman’s own health would deteriorate because of the strain and that even if this did happen, she would still put her daughter and husband first without thinking of herself. Many carers put off addressing their own health because of their focus on others.

We want to know more about the issues facing older carers and what they think about their caring roles. We want to hear what your experiences are. You can let us know here or contact your local Carers’ Centre for a printed copy. And somebody has even donated Marks & Spencer vouchers worth £100 that will be given to a respondent drawn out of a hat.

I know I shouldn’t but I secretly hope that the woman I met a few years ago responds and is drawn out – it would be a very belated 80th birthday present that she truly deserves.

February 2, 2011 Posted by | Carers movement, Carers Strategy | , , , , , , | 1 Comment

Inspiring Lives – Carers Hub

Nearly 7 years ago, I started working at a Carers’ Centre in Scotland. There was a guy there who was passionate, Carers Hub wheelemotional, impatient and committed. He was full of ideas and verve, and built real, lasting bonds with the families he supported. Yet, despite such brilliance he had the wonderful trait of being able to take the mick out of himself.

I did, and do, admire him greatly.

Then I went to work for The Princess Royal Trust for Carers nationally and after a couple of months of meeting support workers from other Carers’ Centres I realised something I couldn’t believe. There were other people just like him – just as brilliant as he was.

These other people were also sacrificing parts of their own lives to support carers and their families. They were also literally bursting with ideas and took no prisoners in their determination to get new services up and running. They were even taking the mickey out of themselves too.

Even if these people are often happy being in the background, what they do and how they do it should be known in every area in the land. Which is why The Princess Royal Trust for Carers and Crossroads Care have created the Carers Hub.

This is a website that showcases successful projects from around the UK that help carers have a life of their own; not be financially disadvantaged; be respected as an equal partner in care; and enjoy healthy wellbeing.

Read about the service that has provided 900+ hours of counselling to carers in Leicester; or the project in Nottingham providing practical support for carers who are caring for somebody dying of cancer; or the young carers summer scheme in Newry and Mourne. Learn, copy, steal and make it a reality for carers in your area too.

The website also guides people to see what is available in their own area before thinking about what other services should be created. And carers are at the centre of all of this. We must listen to them to hear what they want, what they need and then work like mad to help them get it.

I came to realise that the person who inspired me, and all of the other people I subsequently met, were themselves inspired by other people who they saw as being equally passionate and committed. Carers.

Carers of all ages, from all communities, and living in all circumstances but bound by the commonality of selflessness and devotion. And sometimes even by a common brilliance of being able to laugh when others may cry.

Take inspiration from what others have done, and share the Carers Hub


PS: Diana Jones is Chief Exec of The Princess Royal Trust Lewisham Carers’ Centre and was awarded an MBE in the New Year. For 22 years she has been supporting carers in Lewisham. Like others, she inspires. And yet again, she is somebody else who can laugh at herself. Congratulations Diana.

January 18, 2011 Posted by | Carers movement, Social Care | , , | 2 Comments

Carers in the News

Blogs are good when you’ve got newsworthy things to talk about. The problem is that if carers’ issues are in the media, then it generally means I’ve got no time to write a blog. So, the blog I was going to write after Andrew Marr was asking Iain Duncan Smith about what he will do for carers two Sundays ago was superseded by the young carers’ story the Tuesday after. Which, was combined with the Government announcing £400m breaks for carers.

Then there was the Government’s new Vision for Adult Social Care and what it means for carers, but before I could write anything, I was at events with carers two days in a row and wanted to speak about those. Then the Carers’ Strategy was published on Thursday and the Government announced £6m to improve GP support of carers.

Every time I went to write something, it was yesterday’s news. I always get told that blogs have to be current to be read by people, although I’m not sure how many readers I have to lose!

However, if you will permit me I will do a rapid succession of blogs covering all of these immediately after this blog. And anyway taking time to look back at things is healthy…

But all of this activity has made me ask whether this is a sign that carers as an issue is becoming ever more central to political and social discourse.

When everything is being cut, £400m extra is being announced for carers. When the Equality Act came into force, it was the benefits for carers that was highlighted (good job Carers UK). When the Coalition Government published its Programme for Government, there were specific commitments made to carers, when other issues were ignored. The party leaders discussed carers’ issues live on TV twice during the election and specific pledges were made.

I know it will not feel like it for many if not most carers, but as a movement, this could be our time to make great strides forward. The Law Commission and the Commission on the Funding of Care and Support will make recommendations next year which could fundamentally change the legal rights and level of support carers can expect. This is our time that we must make the most of.

The one thing I have learnt in these two weeks is that attention can be fleeting, moving onto something else very quickly. Before you know it, a royal has got engaged and the whole world goes gaga meaning carers’ issues drop back down. We can’t let that happen, not now.

Take care


November 29, 2010 Posted by | Benefits, breaks for carers, Budget, Carers movement, Carers Strategy, Conservatives, David Cameron, Individual Budgets, Liberal Democrats | , , , , | 9 Comments

Does focus on services for the carer detract from a whole-family approach?

Margaret Thatcher and Gordon Brown outside Downing Street

I've been thinking about what's changed

I’m coming to the end of 10 years in the carer’s movement so I’ve been thinking about what’s changed.

Every campaign and movement for change starts by carving out its identity. It has to be clear about who it’s for and who it’s not, so that, in our case, the government and the public understand who carers are and why their needs matter.

I think the carer’s movement has done that pretty well. People still say “carer” when they mean “paid care-worker”, but you only had to look at the three party leaders competing to sing the praises of unpaid family carers to realise that understanding of carers has hit the mainstream. I can’t imagine Thatcher, Kinnock and Steel/Owen having that conversation.

That necessary focus on carving out a space in public policy for carers has had some downsides, though. In fighting against being lumped together with services for people with long term conditions, we haven’t always had enough of a focus on whole-family solutions. Nine times out of ten, carers come to Carers’ Centres with a crisis in the life of the person they are caring for, which has in turn become a crisis for them. It is usually some time before the Centre can help that person to begin to reconnect with themselves as an individual, rather than seeing themselves solely as their relative or friend’s carer. In the messages we give to government, I think we are still finding the right balance between promoting the need for independent services which are first and foremost for the carer, and helping policy makers to understand that decisions made about people’s health and social care support are decisions that affect whole families.

Getting this right will become ever more important, because councils and the NHS are about to come under huge pressure to cut and amalgamate services and because we have seen the personalisation reforms (personal budgets, direct payments etc) have both good and bad effects on the people who continue to provide the bulk of many support packages: the unpaid carers.

We are all inter-connected and interdependent. Both those who give and those who receive care and support can be excluded from ordinary life chances such as employment, community life and full participation in family relationships.. The state can barely afford health and social care as it is. Without a whole-family approach that feels joined up and supportive to unpaid carers, as well as to the people they support, that funding gap will widen and we will again see the NHS and social services teeter on the brink of collapse.

But if over the next ten years, the carer’s movement can help to make it self-evident to every council and local NHS trust that carers are both fundamental to delivering services, and also individuals in their own right, the rewards unlocked for families and for the state will be huge.

While I’m moving on to a new job, I have been thinking about the many carers for whom caring is life-long. Working with carers has, I hope, left an indelible mark upon my life. I’m grateful for that and for the thousands of contributions of time, expertise and experiences The Trust receives from carers: there would be no change without you.


Alex Fox, guest blogger this week, is Director of Policy and Communications at The Princess Royal Trust for Carers

May 11, 2010 Posted by | Carers movement, Health, Social Care | , , , , , , | 3 Comments