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!
As we publish a new report highlighting the lack of support and information that carers of those with dementia are receiving, our Policy & Development Manager for Mental Health, Ruth Hannan reflects on a host of missed opportunities…
A road less rocky is something we all hope our journey through life will be. But it seems to be the least carers of people with dementia can ask for yet their road seems to be far more challenging than it needs to be.
Carers Trust published research on 17 September that we commissioned the University of York and Firefly to conduct for us. We wanted to know what the experiences of carers of people with dementia have been throughout the caring journey; looking at every point from the very beginning to the very end. We wanted to know at what key points carers would benefit from receiving advice, information and support.
For those of us who are or work with carers of people with dementia, the findings aren’t anything we don’t know already but the consistency and prevalence of the key points is crucial for us to demonstrate to health and social care professionals what they still need to be doing.
The report cites ten key points that if professionals offer, check and provider carers with information and support a significant difference can be made for them and the person they care. These key points are:
- When dementia is diagnosed
- When the carer takes on an ‘active’ caring role.
- When the capacity of the person with dementia declines.
- When the carer needs emotional support and/or a break from caring.
- When the person with dementia loses their mobility.
- When the person with dementia has other health problems.
- When the carer has to cope with behaviour problems.
- When the carer’s own circumstances change.
- When the person with dementia becomes incontinent.
- When decisions about residential care and end of life care have to be made.
Currently professionals are missing these opportunities for interventions. Every missed opportunity has an impact on, not only the carer, but the person with dementia. An opportunity to make a decision earlier, an opportunity to plan while the carer and the person with dementia can do this, an opportunity to support the carer’s health and opportunity to help the carer understand dementia and how it may affect the person they care for.
As the journey progresses professionals should still check that the carer has been given all they need rather than assuming that one of their peers or colleagues has done this. If they don’t, we have another missed opportunity.
I hope with the publication of this report commissioners, providers, and frontline staff will realise the impact their missed opportunities are having on the carers’ lives. Let’s hope with this report thy realise by offering information and support they can remove a rock from the rocky road rather than adding one if they miss the opportunity.
The Scottish Young Carers Festival is over for another year and this year it really was the biggest and best so far. This was our sixth Festival and over 800 young carers and their workers joined us at Broomlee Outdoor Centre in the Scottish Borders. The Festival runs Friday through to Sunday and each day is packed with events and activities for the young carers.
On Friday afternoon the buses started to arrive. It was so lovely to see young carers groups from across Scotland being reunited with each other. The Festival is a place where friendships are formed and most of them wouldn’t have seen each other since the previous year. To witness them cheering the buses as they arrived and hugging each other was a truly heart-warming moment. They immediately started to sign each other’s Festival t-shirts and excitedly look through their goody bags and at the programme to see what was in store for them.
The young carers are always full of energy when they arrive so we attempted to tire them out with a disco on Friday evening. It worked to a certain extent but they still started to stir at 5.30am on Saturday morning — much to the delight of the volunteers and support workers!
On Saturday we opened the YC Zone. This is a place where young carers go to share their views and opinions on what it’s like to be a young carer in Scotland. For the first time there was a queue outside the YC Zone on Saturday morning and within an hour the walls were filled with notes from young carers, which was really encouraging to see.
The young carers were given a further opportunity to air their views on Sunday, when key policy and decision-makers joined us. Guests included Michael Matheson MSP, Minister for Public Health, Aileen Campbell MSP, Minister for Children and Young People and Angela Constance MSP, Minister for Youth Employment. The guests and young carers really value this face-to-face time. It gives the young carers a unique platform to speak directly to the people who can really make a difference to their everyday lives.
On Sunday evening they started their journey home. They take with them new friends and memories that will see them through to next year and beyond. They leave with us their thoughts and ideas on how we can make their lives a little easier. It is now up to us to carry these forward.
It is difficult to sum up the experience of the Festival and the impact it has. I always try to take a moment during the Festival to really look at the young carers. What is clear to me is that the weight of the world seems to have temporarily been lifted from their shoulders. They are happy, relaxed and able to just be children and young people. To be a part of that is so rewarding.
As part of the test, we asked them to look at the slides produced by The Nuffield Trust on the old and new NHS structures and what has changed.
The slides show the main changes to management, accountability and funding structures resulting from the Health and Social Care Act 2012.
In our latest blog, one of the network Chief Executives reflect on how the different parts of the new system – Clinical Commissioning Groups (CCGs), Health and Wellbeing Boards, Public Health and HealthWatch – are working together in her area.
She says that things are still confusing and that there are still lots of challenges to address as the reorganisation of the NHS continues.
I have studied the slides and whilst they are not difficult to understand, they are unnecessarily complicated and it’s interesting that the different bodies appear to work in isolation of each other. There doesn’t seem to be anything between each body, leaving plenty of opportunity for conflicting and duplicated work. Also I’m not sure whether the local structures are clear.
Some developments but more engagement needed
The Health and Wellbeing boards have identified some priorities, and they have met with some of the partnership boards (including voluntary organisations) to detail how they want to work. They have identified carers’ needs as one of their priorities – that said, they are not engaging with carers’ centres and at the moment details of membership, or approaching members of the boards to raise issues, is shrouded in secrecy. This is my experience — there may be others who think differently but I have yet to find them!
In my area there is a partnership board, which is a partnership of statutory and voluntary sector organisations, who meet every couple of months to discuss the headline issues and the Director of Public Health usually attends these.
The last two meetings have been cancelled for one reason or another, and it is at times unclear what the purpose of the meetings are as each participant appears to have their own agenda. This is particularly noticeable just now as contracts are changing and the council are opening up services for tender.
Are different parts of the structure working together?
Whether or not the Health and Wellbeing Boards are getting involved with new CCG arrangements is another unknown. This includes whether they are any good at filtering out what they are involved with and any anticipated outcomes.
There are plans for the CCG’s in my area to work with the local authority. However, how they work is not made clear to either stakeholders or wider partners in general.
There is almost an air of secrecy around who works with whom and to be honest I do not think this is entirely the fault of the CCGs. Our local authority have not been proactive in informing the communities that they serve how they plan to work with the CCG’s and what their joint priorities are, or indeed what conflicting priorities exist.
I’m guessing the Public Health are engaged, but again: what their input is, what any anticipated outcomes are, how they are working with the wider community and with the CCG’s in particular, has not been communicated.
It feels at times as though these bodies (I can’t really call them partners at the moment, because there is very little real partnership taking place) are shrouded in the Harry Potter cloak of invisibility. It is really confusing!
We know that the moral and financial arguments for supporting carers are clear – without support, taking on a caring role can mean facing a life of poverty, isolation, ill health and depression. For the person they care for it can mean costly hospital or care admissions if the caring relationship breaks down.
Our Network Partners have to work with a whole range of commissioners – local authority and NHS – to keep themselves viable. In recent years PCTs have had responsibility for commissioning services to support carers and with our Network Partners we have made the case nationally and locally as why support for carers should be prioritised.
However on 1 April this year, the new commissioning structure in England came into place, replacing PCTs with new Clinical Commissioning Groups.
Many of our Network Partners have told us that this change is proving difficult for them and that it differs radically from place to place. In some areas the situation has stayed fairly stable and familiar faces remain, whereas for others, CCGs are undertaking reviews of local services commissioned by the NHS and long established contacts have gone.
To support our Network Partners make the case to their local CCGs for commissioning well for carers, and in some cases start talking to new commissioners about carers services, Carers Trust has produced Commissioning for Carers: Key Principles for Clinical Commissioning Group.
The NHS reforms not only changed local commissioning systems but also brought in new accountability arrangements which means that there are no longer specific performance targets or rules for investing in carers services. This makes it more difficult to hold the NHS to account locally for what it commissions for carers.
The NHS Mandate sets out the Governments priorities for the NHS and key areas where it wants to see improvements by April 2015.
- Preventing people from dying prematurely
- Enhancing quality of life for people with long-term conditions
- Helping people to recover from episodes of ill health or following injury
- Ensuring that people have a positive experience of care
- Treating and caring for people in a safe environment and protecting them from avoidable harm.
Commissioning for Carers: Key Principles for Clinical Commissioning Groups demonstrates to CCGS how supporting carers can help meet these key areas for improvement and led for savings across the NHS.
We know that CCGs across England are under enormous pressure to meet financial targets and the key priority areas for improvement.
Commissioning well for carers is in all our interests, including CCGs, as it benefits the people being cared for, reduce overall spending in the NHS and can help commissioners meet required their outcomes. Let’s hope that CCGs are listening.