The Care Bill aims to put carers on an equal legal footing to those they care for. This is great news for carers. Now that the stages in parliament are nearly over, we start to look at what this all means in practice. Developing the right regulations is a complex job but vital if we want the new law to mean real change for carers.
In February, Carers Trust and GovToday brought together a panel from across local government, parliamentarians, academics, carers and carers organisations to think this through. Norman Lamb, minister for Care and Support, launched the debate by setting out the Government’s commitment to carers. You can see this here. http://youtu.be/mbrsHxxFx3c
Clearly local authorities are going to struggle to find the funds for any new support. Many are doing their best to be creative but if there’s no money there’s a limit to how far creativity can take you. The Better Care Fund means no-one can wriggle out of making plans for carers, but what this means in practice remains to be seen. The perennial tough nut of social care funding remains in need of cracking! You can find out about the panel’s views here http://youtu.be/ZlppqMklyh0 with interesting discussions about prioritisation and integration being the keys to success in identifying carers, understanding what they need and providing preventative support.
Information, advice and advocacy for carers is crucial – many carers say they just can’t get the information they need particularly when they’re trying to arrange residential care. There will be a new duty on local authorities to provide this but we need to make sure this isn’t just a factsheet or a page on a website. Carers need face to face relationships – people they can come to trust and rely on so that they can come back time and time again if they need to.
The mantra is choice – choice in services and support, choice in your own life. But there is no choice in services if there’s nothing of high quality to choose from. Carers simply won’t allow people they don’t trust to look after the person they care for, meaning they don’t get a break. Quality doesn’t come cheap but choice and quality must always go hand in hand. One cannot exist without the other. In this film, the panel consider how hard it is to find relevant services, the fact that this so often happens at a time of crisis and how important co-production of services is to really understand what carers want. http://youtu.be/wCBS0FAC2QU
The thorny issue of charging and eligibility is also raising its head. Although carers can currently be charged for their own support by local authorities, few are. However, in straitened times, will local authorities see this as a way of reducing costs? In which case, does it mean some carers will find themselves ineligible for support, leaving them to deteriorate into crisis? What would this mean for the person they care for? Will we end up with a national set of eligibility criteria which in effect is delivered through a post code lottery due to the differing funding arrangements and cut backs across different local authority areas? These are serious issues. The regulations must be clear that carer support is preventative and saves money in the long run. Charging carers for their own support is counterproductive and local authorities must not see this as a soft target for savings.
Finally we need to rethink how carers assessments work – too often they are cursory tick box exercises. If done properly, a good assessment can ensure a carer has their voice heard and feels valued and can be the gateway to wider services. But there are others who may never come into contact with social care systems (a carer for someone with cancer for example who comes into contact with health systems but not social care). So identification first, and an assessment as a gateway to services as a follow up. Those undertaking them need to be trained, there needs to be an outcome, and carers need to feel fully involved, not fobbed off. http://youtu.be/q35usJ3IkYw
There are lots of fine intentions in the Care Bill but intentions on their own don’t make people’ lives better. If the Government gets the regulations right, there could be a real positive impact on carers’ lives. We need to make these opportunities count for carers.
Tell us what you think.
How might the changes impact on your life?
What’s happening where you live?
What would you like to see happen next?
See the whole debate here http://youtu.be/uXp2Z0loIK4
This week, all of the organisations involved in Carers Week – including Carers Trust, Carers UK, the MS Society, Age UK and others – went to Whitehall to launch the Carers Week quest. The aim this year is to really focus our minds – not just amongst carers charities, but across the NHS, local authorities and other charities. We need to work together locally as well as nationally because although we know there are around 7 million carers in the UK, the vast majority do not get anything like enough support.
Carers Trust, through our fantastic network of local organisations, reaches around 460000 carers, and that’s a great achievement, but we need to do more. Our goal over the next few years is to reach further, using all the means available to us. Some carers will be able to get direct support locally, whilst some will be ablel to use online support or information sources. It’s all got to be about what works best for each carer.
However, many people still just don’t realise they are a carer. This is where Carers Week comes into its own. Through the work done to get carers issues in the media nationally as well as locally , hopefully people who are carers will realise that the role they are undertaking is incredibly valuable, and there is support there. I know things are difficult, and sometimes not all problems can be solved – especially if carers are struggling on low incomes and with cuts in services - but all carers should be able to get advice on getting as much support as is possible.
Carers Week 2014 is on the 9-15 June, and we’re asking individuals and local to make pledges on what you will do to support carers in the run up this Carers Week. Carers Trust pledges to reach more carers than ever before to ensure they get the support they need. This year, we’re delighted that for the first time Carers Week is going to include a young carers awareness day on Friday 13 June, where schools, colleges and youth organisations can get young people involved in thinking about young carers and supporting them to fulfil their potential. This is a really exciting development and we are proud to be leading it.
So what will you do for carers? Get pledging!
Note: The following blog post has been contributed by a guest blogger.
It’s sometimes hard to believe that people still refer to post-traumatic stress disorder (PTSD) as ‘shell shock’, and dismiss it as something and nothing.
For those living with the condition on a daily basis this attitude is understandably hurtful, and if you come across anyone who doubts that PTSD is a real thing, the infographic at the end of this post should give them an idea of how devastating it can be…
Do you know, for example, that 40 soldiers died serving in Afghanistan in 2012, but during the same year 50 soldiers and veterans committed suicide? Although not all of these suicides can necessarily be attributed to PTSD it is known to be one of the possible consequences of the condition if left untreated.
Or that under 18s are the most likely to suffer from PTSD when they leave the forces?
Looking at the graphic it’s not hard to see why PTSD has mainly been associated with ex-servicemen since the First World War. In fact 65,000 WW1 veterans were still being treated for the condition ten years after the war ended.
This could be because of the feelings of embarrassment that many sufferers experience, (over 93 per cent of veterans admitting to being ashamed about mental health problems).
As we know, PTSD continues to affect military personnel, as well as the general population today, according to an article in the Telegraph (17th March 2013) Ministry of Defence figures reported 273 cases in 2012. But what’s truly shocking is that, according to one charity, a 12 per cent rise in cases is predicted every year until at least 2018.
Despite the association with the armed forces, one in three people will develop PTSD following a traumatic event. The reason it’s so important to raise awareness is that it can affect anyone.
If you care for someone suffering from PTSD then help is available for you and for them. With the right help the symptoms of the condition can be relieved, and sufferers might even be entitled to compensation.
Three out of four veterans resolve their symptoms by going to counselling. If you’re living with this condition, either as a sufferer or a carer, please know that you’re not alone and there is help out there from the NHS and counsellors as well as charitable organisations.
Email our online support team at email@example.com if you need further advice as a carer.
- An infographic by the team at Johnson Law
Our Policy & Campaigns Officer, Kirsty, explains why we have chosen to partner with the Men’s Health Forum on some important new research being undertaken about male carers…
41% of the UK’s carers are men. In older carers (aged over 75) the ratio of male to female carers is virtually equal with 50.4% of carers men, and in the over 85s 59% of carers are male.
Yet here at Carers Trust we often hear from our Network Partners that fewer men than women access their services and that they face challenges setting up male carers support groups.
That’s why we have joined up with the Men’s Health Forum for new research project on male carers.
We know that carers are more likely to have ill health compared to those without a caring role but research also shows that men’s health is unnecessarily poor and men are less likely to seek help and support. The statistics on men’s health are shocking. For example:
Men visit their GP 20% less frequently than women and are also much less likely to use pharmacy or stop smoking services.
40% of men still die prematurely (before the age of 75)
That’s why together with the Men’s Health Forum, we have identified male carers as a key group and have now launched a UK wide survey to help us greater understand the needs of male carers. The survey is open to male carers of any age and men who have had caring responsibilities in the last three years.
Through our survey we want to understand more about the type of support male carers currently access, what sort of support they would like to have and their experience of caring – who do they care for, for how long and how has this impacted upon their lives.
We are keen to reach as many carers as possible across the UK so please share the survey with anyone you think might be interested in taking part.
The survey will run for the next six weeks (until 23rd February) and over the next month we will also be speaking to Carers Trust Network Partners to learn more about their experience of supporting male carers – what works, what doesn’t, what have male carers told them they need and the impact support can have on their lives.
To coincide with the launch of the survey an expert Q&A is also taking place on Carers Trust’s online discussion boards. Over the next two weeks experts from the Men’s Health Forum are here to answer questions from male carers about their health and the impact caring has had on their life.
We are really interested to see the results of the survey and hope that it will not only help Carers Trust and our Network Partners learn more about male carers needs but also draw attention to the large number of men across the UK who care for friends and family members.
It’s been quite a year for carers. Ups as well as downs. In the Carers Trust policy team we’ve been running from one thing to the next, trying to make sure that we cover as much as we can in this ever changing political environment.
This has meant working with other charities and partners as much as possible so that between us, carers’ views are heard and we can achieve the most change we can. Many thanks to all our friends and colleagues in the Carers Trust Network across the UK, The Care and Support Alliance, the National Young Carers Coalitions and local and national government, politicians, researchers, and other friends. A special big thanks to Carers UK, the Childrens Society and Barnardos for their partnership and support this year. Together we all achieve more than we ever could on our own.
There have been lots of downsides. The bedroom tax, which came into force this year sticks out as one of the black points. Carers and disabled people are now recognised as one of the key groups negatively impacted upon by this unfair and nonsensical policy. A recent survey found one third of disabled people asking for help with paying this have had their claims rejected. The bedroom tax means misery for people often already living on low incomes. It really does have to go.
On the upside, the Care Bill looks hopeful and will improve carers’ rights, we were delighted, after years of work, to be able to achieve the amendment to the Children and Families Bill to ensure young carers needs are recognised. Parent carers are still missed out though, so that’s a work in progress – we can’t let parent carers’ rights be left behind. Of course, it remains to be seen whether the funding available will cover the costs of implementing the Bill – rights are in many ways only as useful as the funding to make them a reality.
As a round off to this year, we’re really pleased that Carers Trust has been able to influence guidance for the Better Care Fund – NHS England’s fund to improve integration in health and social care.
The guidance states: “The £3.8bn Fund includes £130m of NHS funding for carers’ breaks. Local plans should set out the level of resource that will be dedicated to carer-specific support, including carers’ breaks, and identify how the chosen methods for supporting carers will help to meet key outcomes (e.g. reducing delayed transfers of care).”
We are delighted to have secured this as there was a real risk that this funding would be completely lost within the overall fund. We hope this will provide local carers’ organisations with levers to ensure carers have access to the support they need and to their fair share of this funding.
I can’t round the year off without mentioning our partnership with The Co-operative. What a whirlwind of activity! It has been just a joy to see so many people out there committed to raising funds for carers, and increasing the profile of carers into the bargain. It will enable us and our network partners to do so much more for a group of young people who really do deserve more. A million thanks yous to the Co-op and their marvelous staff for the dedication to supporting carers they’ve shown.
Next year will be even tougher for carers, with more local authority cuts and the ever looming likelihood of further changes to welfare benefits. We have to face these challenges head on, and with your help l promise we’ll do our very best do what we can to make sure carers get the best deal we can possibly argue for.
Thank you all for your support in 2013, and if you’re a carer, I hope you get a chance for a break over the festive period. If Santa is your thing, I hope he brings you something lovely.
Take care and see you in 2014
If I’m honest when I think of a Call to Action, I think of the scene in Independence Day (1996) where the President of the USA is getting everyone geared up to fight back against the alien invasion. Before you get chance to say it – yes I am a nerd.
But now, calls to action are everywhere, I see them everywhere – and now I’m involved in one!
Carers Trust has been part of the Dementia Action Alliance (DAA) for a few years now. Last year, carers and carers’ organisations involved raised the need for the DAA to act more actively on behalf of carers of people with dementia.
The carers noted that The Prime Minister’s Challenge on Dementia did not include enough clear actions to improve the lives of carers as well as those with dementia.
A working group was established to develop a plan and the basis of The Carers’ Call to Action.
The Carers’ Call to Action (CC2A) identifies a Shared Vision for carers for people with dementia. This is:
- have recognition of the unique experience of caring for someone with dementia
- are recognised as essential partners in care – valuing their knowledge and the support they provide to enable the person with dementia to live well
- have access to expertise in dementia care for personalised information, advice, support and co-ordination of care for the person with dementia
- have assessments and support to identify the on-going and changing needs to maintain their own health and well-being
- have confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care
The CC2A is focusing specifically on the newly established Health and Wellbeing Boards, asking them two take a two phased approach.
By March 2014 CC2A will engage with all Health and Wellbeing Boards, Clinical Commissioning Groups and Local Government in England to make a commitment to our shared vision. We will provide support, resources, examples of good practice and solutions.
By March 2015 two thirds of Health and Wellbeing Boards, Clinical Commissioning Groups and Local Government in England will recognise the importance of support for carers of people with dementia. Local areas will be awarded star ratings by the CC2A based on demonstrating measurable actions in line with the five aims of OUR SHARED VISION.
So now for action! Remember the President of the United States rousing the pilots to fight the aliens – well we’re at that scene.
Carers’ organisations can do exactly the same as individual carers as well as get involved with their local Dementia Action Alliance which are growing at an exceptional rate around the country.
It’s time for action. Carers Trust recent research “A Road Less Rocky” showed that carers of people come into contact with a whole range of professionals and experience multiple crisis points whilst caring yet are still not being supported or given the information they need. This is a chance to try and address this.
So raise your voices people – and to the fighter jets!
You might not have noticed it as it came and went, but yesterday, Monday the 18 November 2013, was a historic day for young carers in England.
As you might have seen in a previous blog, the work we have been doing to ensure young carers have their rights recognised in law has finally paid off. Following the statement from the Secretary of State, the Government put forward an amendment to the Children and Families Bill that will mean young carers , on the appearance of need, will have a right to assessment and to having their needs met. This is an enormous step forward. The amendment was debated last week, and technically, it passed on Monday. The law, we expect, will be passed in full in the New Year, and will come into force in 2015. For the first time, in law, young carers will be recognised.
It’s been tricky work. Changing the law is a complicated business. There is so much to think about and so many people who need to be convinced that it’s the right thing to do – because inevitably changes cost money. And you always have to be wary of the perils of “unintended consequences” – you may do something with the best of intentions, but then find that in practice, something else happens altogether.
I don’t think we can underestimate how important this step forward is.
Now we need make sure that this isn’t where it ends – the law needs to work to reduce inappropriate caring too – so that young people aren’t put in a position where caring has a negative impact on their health, wellbeing or development. This means meeting adults’ needs better – and this needs to be addressed in the Care Bill and its regulations. So hopefully, chiming nicely with the zeitgeist of integration, we will have two laws that actually work together to ensure young people and their families are supported.
There’s more work to be done. The regulations are incredibly important in laying out exactly how all of this will work, and these are only in the initial stages of development. But let’s take a short moment to be proud of all our achievements and to thank everyone – to mention just some – the young carers and their families, the young carers’ services, the members of the National Young Carers Coalition and staff who have done so much incredible work on this, and the officials at the Department for Education and the Department of Health. And then there are the legal advisers who gave their time to help us, the journalists, the academics , the local government officials and policy makers, our fantastically supportive friends in both Houses of Parliament – and of course the two Ministers concerned – Ed Timpson and Norman Lamb.
Everyone’s input and co-operation has been needed to make this work, sometimes putting aside differences or other priorities and making sure we never forgot what we were trying to achieve. It has been a privilege for me to be Chair of the National Young Carers Coalition as this has come to fruition. At a time when the lobbying role of charities is coming under intense scrutiny, it’s an example of the very best of the voluntary sector working in partnership with decision makers to achieve a fantastic outcome for the people we are here to support.
Well done everyone, and thank you all. Let’s hope this is the start of a better future for young carers.
As part of our Care o’ Clock campaign to help raise awareness about the issues faced by young adult carers, young carers from Swindon Carers Centre recently put some questions forward to their MP Robert Buckland, to give him the opportunity to tell us about why he thinks young carers and young adult carers should be supported and what can be done to make a positive difference to their lives.
Robert Buckland MP has been working with Carers Trust to help ensure that the Government changes the law for young carers so that they stronger rights to assessment and support.
Young carers: What do you think are the biggest issues for young carers and their families in your area (Swindon) and across the country?
Robert Buckland MP: The recognition of their needs is the most important issue facing young carers and families in England. We know that the official number of young carers is only the tip of the iceberg because many are not identified, let alone receive the support that they need.
If young carers don’t get the same level of support as adult carers, we risk leaving them alone with difficult caring situations which can permanently damage their life prospects. I do not believe that allowing those kinds of situation to occur is acceptable.
We need to make sure all young people are given equal opportunities to grow and achieve. So I would like to see professionals like teachers and doctors take the time to understand what caring involves and how it can affect children’s lives
Young carers: In what ways have you been supporting carers of all ages both locally and nationally?
Robert Buckland MP: I have been supporting amendments to the Children and Families Bill regarding young carers and am delighted that the Government is now adopting these proposals. I am also working locally with the Swindon Carers Centre who are doing some great work to support young carers in my constituency.
I was recently shocked to hear about the number of young adult carers – in the UK there are at least 375,000 young people between 14-25 caring for someone in the family or a friend. Currently, this group are not well recognised or supported and there is a lot we can do to improve this situation. For example, what are universities and colleges doing to help support young carers who want to continue with their education?
I will continue to do what I can in the Houses of Parliament to raise these issues and locally to support carers.
Young carers: How aware are you of the pressures and difficulties young carers are placed in due to the family circumstances as many are not old enough or in the position to just leave home? What do you think would help families in these situations?
Robert Buckland MP: As a parent of a young carer, I am aware of at least some of the pressures and difficulties that are placed on their shoulders. We need to find new ways of supporting young carers to achieve the things they want to achieve and have time to enjoy the same activities that other children do. It is also important that support is provided to the whole family, including the person who the young carer is looking after. It is really important that we are not seeing situations where a child’s caring responsibilities are causing a level of stress and anxiety that prevent them from going to school and fulfilling their own potential.
Young carers: What are you doing to help to ensure that young carers are seen by the professionals that support their parents (i.e. those carrying out assessments with parents and not taking into account that their main carer might be under 18)?
Robert Buckland MP: I have tabled an amendment to the Children and Families Bill that will enable young carers to be seen by professionals working in both children and adult’s services. The amendment links to the Care Bill which will require local authorities to take a whole family approach and will help to ensure that young carers are considered when their parent is being assessed for care and support. It has been invaluable working with the Carers Trust to develop these legislative proposals.
Young carers: How can health care professionals (including GP’s and hospital staff) be more aware and understanding when talking to us (young carers) about our own health?
Background from Swindon Carers Centre: One 16 year-old carer recently reported that after breaking their leg rushing down the stairs to help at home, no hospital staff asked if they had a caring responsibility. Schools and colleges seem to be very different: pupils are asked on forms and at interviews about caring and if they require additional support.
Robert Buckland MP: Hospitals and GPs should ask as a matter of course about caring responsibilities, so that situations like this do not happen again. Across the whole spectrum of health and social care, we need a common approach to these interlinked problems. There is lots of work to be done — but the recent proposals to the law for young carers are a huge opportunity to improve support for young carer and their families across health and social care.
The Carers Trust Care o’ Clock campaign took place in the week of the 27th and 28th October, when the clocks changed — giving everyone an extra hour in their day.
For many young adult carers, the extra hour means only additional time spent caring, while the rest of us can use that time for ourselves. Carers Trust and young adult carers have been asking MPs ‘How will you use your extra hour to support young adult carers?’
Thank you to all the young carers, Swindon Carers Centre and Robert Buckland MP for taking part.
A recurring issue in the news throughout this government’s time in office, and to be fair, in the last one too , is what welfare benefits we pay and to whom. There’s a repeated theme reflected not only in government but to a large extent in the wider community that somehow we are paying far too much to far too many people. This argument has gathered pace to the extent that the word “benefits” has become associated with “scroungers” and people who aren’t quite pulling their weight.
I, as much as anyone else, think we all have a responsibility to contribute and pay our own way if we can. It’s part of being a responsible citizen. If we can, we should contribute, not only in terms of paying tax, but also in terms of being a positive member of our community. Society just wouldn’t work otherwise.
However I have a real problem with the increasing overlay of negative spin. Somehow over the last few years, we’ve got to a position where instead of being proud of they way we have chosen to operate as a society and the fact that we think it’s important to support vulnerable people , there is a perception that people in receipt of benefits are in some way lazy, not trying hard enough, or not contributing.
In actual fact, the statistics are vastly different from what most people think. A report by the Institute of Fiscal Studies in late 2012 reveals only 2.57% of the benefits budget goes on out of work benefits, and 15.55% goes on disability and sickness benefits. For 2011-12 it is estimated that only 0.8% of total benefit expenditure a result of fraudulent claims.
The misconceptions and stigmatization, for the vast majority of people, this does them, and their contribution to society, a huge disservice.
In a time of recession it’s difficult for anyone to get a job, and even more so for those with a disability or caring responsibility. And people who are carers are of course contributing massively – although Carers Allowance, even for those able to claim it, is sadly inadequate and there are many more with significant caring roles who can’t claim it.
Many people don’t even claim the benefits they are actually entitled to – either because they don’t know they are entitled, because the process is too complicated, or they feel they shouldn’t. No-one should feel embarrassed to claim a benefit they are entitled to, in the same way as no-one should feel embarrassed for using an NHS service or sending their child to the local school. We all contribute so that everyone can have a decent quality of life . That’s what our post-war settlement was all about. William Beveridge, in 1942 suggested that those of us who can, should pay national insurance so that people who were sick, unemployed, retired or widowed could have a minimum standard of living “below which no one should be allowed to fall”.
This was forward thinking for its time. The principles, 70 years later , should remain exactly the same.
Carers Trust has joined a campaign called Who Benefits? because we need to change the debate and challenge this negative narrative that paints people as indolent for claiming what is rightly due to them, if their circumstances are such that they need it. I have always been proud to live in a society which believes you can make your contribution in many ways, and that we should never leave anyone who is doing the best they can without the means to a decent quality of life. I hope you the same. Over the next year, in the run up to the election, write to your MP and tell them that we ALL benefit from fit-for-purpose benefits system.
On Tuesday, the Secretary of State for Education Rt Hon Michael Gove MP made an announcement that the Government is going to change the law for young carers and published an amendment to the Children and Families Bill. It was a landmark moment for young carers and their families and for the National Young Carers Coalition’s (NYCC) campaign, led by Carers Trust.
It means that not only will young carers have stronger rights to assessment and support, but it will also be made clear to professionals that services should work together so that the whole family is supported. For the first time, children’s and adults’ law will be linked together so that the law is really clear and no one can say they don’t know what they are supposed to do to support young carers.
This should help to prevent children and young people from undertaking caring roles that can sometimes stop them from going to school; cause them stress and anxiety and prevent them from achieving the things they want to achieve.
Our hope is that these changes will make a difference to children’s lives because professionals in a position to recognise and support young carers will understand how caring can impact upon their lives and provide support so that young carers can thrive like other children and young people.
This is really at the heart of the issue as for too long and too often caring has not seen as something that can actually harm a child’s outcomes. Children have been left to get on with it, even if they are doing things most adults would not be expected to do.
The changes are significant in another way, because they prove that sometimes the Government does listen when young people raise their voices and charities unite and call for change.
It is true that this doesn’t happen often, but our campaign has shown that if we work together and take the time to find out what the problems are, by listening to young people and families, then we can speak clearly and confidently about why change is needed.
Since July 2012, young carers and young carers’ services across the country have contacted their MPs and written to the Government; some have met with politicians and taken part in events, tweeted or talked to their local newspaper about the campaign. This activity has been supported by all the major charities for carers and children and families who have met with the Government to work out the best way to make the changes needed.
A clear and united message is a powerful one which is why it is not a surprise that politicians from all the major political parties supported the National Young Carers Coalition’s calls for change. Some of those MPs and Peers have also championed young carer’s rights for many years – people like Barbara Keeley MP, Rt Hon Paul Burstow MP and Robert Buckland MP – and we are grateful for all the support from Parliamentarians, without whom we would not be here today.
It was also important that earlier in the year representatives from local government agreed to key principles for changing the law for young carers. The Association for Directors of Adult Services (ADASS), Association for Directors of Children’s Services (ADCS) and the Local Government Association (LGA), joined with NYCC to call on the Government to improve young carers’ lives.
For Carers Trust it’s been a long journey but for a charity who represents all carers, whoever they are, whomever they care for and whatever their experience of caring may be, we are delighted that the Government has listened to young carers and intends to give them stronger rights.
So now there is only one more thing to say and to do – thank you to all the young carers, practitioners and politicians who have made this happen. Let’s celebrate!