Children and Families Bill: a landmark moment for young carers

Young carer at windowOn 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!


October 11, 2013 Posted by | Young carers | 3 Comments

Carers remain concerned over continuity and knowledge in the new NHS

Doctor checking blood pressureThe latest contribution for our blog series Lost in Transition? How carers’ services are navigating the new NHS is from the CEO of a large Carers Centre in the south of England. In it they reflect on the impact of recent restructuring on NHS staff and how changes are resulting in a lack of continuity and knowledge about carers’ issues...

The new NHS has arrived and in many respects this month’s NHS feels no different to last month’s. For carers, the impact of the most significant NHS changes since 1948 could take many months, or even years, to become apparent.

But for those of us working with the NHS—as commissioners of our services and as partners in the delivery of support for Carers—the changes are already apparent.

The first appearance of change was in the response of NHS colleagues. Staff working in and with the NHS are used to change. For some careers are measured not in years or promotions, but in restructures and cycles of change. A hardy few wear the number they have survived as a badge of honour, but even they have been going around in recent months with a dazed look that says “no, this one really is different”.

The second appearance of change has been in the sudden rush of business that absolutely had to be concluded by the end of March. Staff who have been in limbo for months getting to grips with new briefs, partnerships and responsibilities in weeks. If only it had been the other way round: weeks of uncertainty followed by months in new jobs with adequate time to prepare. And any number of contracts, policies and strategies to be reviewed, cancelled, revised, updated, or if all else fails extended on the grounds that ‘business as usual’ will do for now.

For us, at least until recently, most business to do with carers has fallen into this last category—neither big enough (in monetary terms) nor important enough (in commissioning terms) to appear on the CCG radar. But this continuity is only temporary; the sudden rush of business has been accompanied by a massive loss of history and knowledge as staff have moved on to new roles or pastures and this presents us with our greatest threat.

Whilst review of all services is inevitable, the loss of continuity sees this being led by commissioners who start with little understanding to inform their thinking.

Commissioners with little experience of carers needs and strategies, reviewing services they have not encountered before, alongside carers and providers who are strangers to them if not to each other. Some will tread carefully, take a long-term view, and ensure change does not create discontinuity and fear amongst carers and providers.

But some will not and therein lies the third, and thus far most worrying, appearance of change: an emergent tendency to engage in what could generously be described as “action research” but feels more like ‘changing stuff to see what happens’.

Add in to the mix all the usual jockeying, that inevitably accompanies change and competition for funding and position, and it leaves many wondering what the next few months will really bring.

Lost in Transition? bloggers are Chief Executives of independent carers’ organisations, who are providing insights into how NHS reforms are impacting on carers’ services and carers across the country.

Watch this space for more updates about what the changes to the NHS really mean…

June 24, 2013 Posted by | Lost in translation? | , , , | 1 Comment

The Care Bill: what’s new and how does it affect carers?

PRTC-111So the Care Bill (formerly known as the draft Care and Support Bill) has been published by the Government and was debated for the first time yesterday in the House of Lords.

I have been looking at the new legislation since the draft Bill was published last July, so the Care Bill feels a bit like an old friend. It’s been highlighted and scribbled on, noting the good bits and bad bits, and we’ve been talking to the Government and the Joint Select Committee in Parliament about how the Bill can be improved.

So, what’s in the Care Bill now and how has it changed? Importantly, will it really make a difference to carers’ lives? Here are some of the key changes…

Duty to promote wellbeing and prevent need for support

A key element of the legislation is the promotion of people’s wellbeing to prevent a crisis point being reached. Many people are not eligible for support from the State, but the Bill recognises that this shouldn’t exclude people from being able to access the right information and advice or from an assessment which would identify what kind of support is available in their community. We are pleased to see that the Bill now makes it clear that carers’ wellbeing should be promoted and that local authorities should reduce carers’ needs for support. But we also think these duties should include access to advocacy (independent support to help navigate available options).

Duty to assess carers’ needs, including the whole family

The Bill proposes new rights for carers so that for the first time they will have the same rights to assessment and support as the people they care for. A couple of helpful changes to the Bill make it clear that carers’ needs should be assessed before any financial assessment – previously we were worried that many carers would be excluded if  they were above financial thresholds. Carers’ assessments must now include assessment of the day-to-day life outcomes that the carer wishes to achieve — another welcome move.

Meeting carers’ needs and charging for services

We are still concerned that local authorities will be allowed to charge for carers services, although the Bill now says that some exceptions can be made, for example for preventative services. However, this is not enough to ensure that carers are never charged. We know that it makes economic sense to support carers and we also know how important it is that carers are not charged unnecessarily for services that may be for the person they are looking after.
Carers Trust is calling on the Government to look again at this part of the law.

Sufficient services to allow carers to work

A very welcome development is that the law now includes a duty on local authorities to provide sufficient services in their area so that carers are able to participate in work, education or training. In too many cases, carers are unable to work because of the lack of care provided to the person they are looking after.

Parent carers and young carers

If it appears that a young carer may have needs for support after becoming 18 they will now be able to request an assessment under the adult law, regardless of whether they already receive support. However, Carers Trust doesn’t think that young people should have to request this assessment and we are very disappointed that the law still doesn’t provide equal rights for parent carers or for young carers.

Funding social care

You may have already heard that the Bill now also includes proposals made by the Dilnot Commission. It introduces a cap on social care costs and the upper capital limit is being raised to reduce the risk of people having to use most of their assets to pay for care. We are going in the right direction but the social care system is already seriously underfunded. With rising demand for support, the Government must act to addressthis funding crisis, so that new duties for support will actually make a difference to carers’ lives.

The Care Bill also includes provision for personal budgets and direct budgets for carers and new duties around safeguarding.

The full briefing will be published on For further information, please contact me: Emma Smale, Senior Policy and Parliamentary Officer,

May 22, 2013 Posted by | Law, Uncategorized | , , | Leave a comment

It’s not surprising that carers are worried about the future

The White Paper on Social Care is coming “very soon” and promises to strengthen carers’ rights but appearance of a funding solution to the impending crisis in adult social care looks increasingly unlikely. Despite the ‘Quad’ (the regular meeting of the Prime Minister, Deputy Prime Minister, Chancellor of the Exchequer and Chief Secretary to the Treasury that discusses important coalition issues) discussions last week over the government’s position on Dilnot and funding reform, hopes of even having sight of a progress report on social care funding are fading fast. It looks like there may not be any progress on addressing the funding crisis in adult social care until the autumn at the earliest.

It is in this expectant and what is feeling like an increasingly hopeless atmosphere that the Local Government Association has issued its stark warning about social care funding – either we reform the system now or fundamental change will be needed to the way local services are funded and organised and or to statutory and citizen expectations of what councils provide.

The LGA projections show that even if social care demand is met (and this will still only be services for a minority of people) there will be a likely funding gap of £16.5 billion a year by 2019/20. What this means is that there will be hardly any money left at all for all other council services like libraries, housing, parks, playgrounds, street lights, community centres, leisure centres to a name a few.

The projections are based on the fact that central government funding for local government has already been cut from 29.7bn 2010/11 to £24.2bn in 2014/15 and that there will be further reduction to around £17.6bn by 2020 in line with Departmental Expenditure Limits set out in the Budget 2012.

The LGA projections appear to leave local government with two choices. Either maintain spending on social care and reduce spending in other areas which will drastically impact our communities or distribute spending across social care and other services. This would leave more vulnerable people with care and support needs with inadequate services or without any services at all, which is why the LGA have put it quite simply – “Without money and reform, there is no solution”.

This is really bad news for many carers who are already battling on a daily basis to get the care and support that they and their loved ones need. At the many events during Carers Week, it was made clear to me that many carers are incredibly worried about the future and how they will cope with the costs of care. They experience a lot of anxiety about their own ability to fund the care their loved ones needs and about financial restraints on the services they rely on. One carer explained “the day centre is very important for my son but also for me – it really is the best respite for a carer”. Someone else commented that the centre offering many of the activities that she and her husband take part in is closing. She’s not sure whether there will be anywhere else to go.

Carers Week was all about the fact that carers have poor health outcomes. But doesn’t it seem odd that despite the Government making it clear that they think carers should get breaks and that their health should not suffer, carers are actually experiencing high levels of stress and anxiety about funding for the services that their loved ones need?
Contradiction is at the heart of Government’s policy making on adult social care – they are willing to overhaul the complex and messy legal framework and willing to look at strengthening carers’ rights to assessment and support, but currently there is no way of funding the increase in demand for care and support. This will make it extremely difficult to fulfil carers’ rights. Of course, we welcome the Government’s “determination” to do more for carers but the legal reforms alone will not result in access to high quality care and support.

Carers know only too well that, without a funding solution for adult social care, they will continue to worry about the future because they will be left responsible for meeting the care needs of their family member of friend. We know that many of those being cared for are receiving the bare minimum from local services. This increases carers’ responsibility which is why they constantly tell us what they really need is more support for the person they care for. If the Government is serious about making support for carers a reality then it’s time to listen to them and have that difficult conversation about how we’re really going to pay for adult social care.

July 5, 2012 Posted by | Social Care | , , , , | 1 Comment

Carers Week – Carers Take Over Parliament

Note: This post is written by Claire Thwaite, Carer and volunteer at The Carers’ Resource in Skipton, where she helps to educate people about the importance of carers and to help reduce the stigma surrounding mental illness. She offers others support and information that she did not have when she first became a carer. Claire attended the Carers Week Speednetworking Event in Parliament.

My journey to London started out in familiar way – a mad scramble to get both myself and my cared for washed,

Claire with MP Andrew Stephenson

Claire with MP Andrew Stephenson

dressed and ready to leave.

The result? I missed my intended train and fretted the rest of the way about missing my connection. As my cared for pointed out when I got irate “that’s exactly what you are going to London to talk about” – Doh!

Fortunately, I arrived in time and Emma (Senior Policy & Parliamentary Officer, Carers Trust), James (Trustee from Action for Carers, Surrey) and I fought our way through the crowds and queued up to pass through security at the entrance to the Houses of Parliament.

Scanned, tagged and deemed no threat to security, we made our way into Westminster Hall with enough time for a brief tour. From that moment on I feared I would be struck dumb by the sheer awesomeness of this beautiful building – what triumph, tragedy and torment those walls could tell of.

Onward to the Jubilee Room and the initial hubbub began when the Minister for Care Services, Paul Burstow MP entered the room and everyone vied to obtain a few precious seconds of his time and maybe get a picture.

On to the real aim of the day – MPs began filtering through and I started to feel a little nervous. Fortunately, my first conversation was with Robert Buckland MP who was extremely friendly. He showed a keen interest in hearing about my experience caring for my mentally ill partner and my views on how the government needed to do more to get help for carers from the outset.

My next conversation with Conservative MP for Gosport, Caroline Dinenage was equally positive – I shared my experience of the downfalls of the recent changes to benefits, which have left me faced with having to give up my own job to support my partner back into work.

The following tete-a-tete, with an MP who SHOULD remain nameless, was brief as he sat down declaring himself “unable to learn anything today as I have been here for 30 years”. So, I saved my breath for those who had a genuine interest – and there were many, most of whom had their own experiences of caring or mental illness.

Carers with MPs at the House of Parliament

Carers Speed-Networking with MPs at the House of Parliament

During a most interesting discussion with Barbara Keeley MP about a new Private Members Bill on social care that she is taking forward in a few weeks time, my local MP, Andrew Stephenson arrived. He was charming and shared some of his own thoughts about mental health and how Parliament is engaging with the issue.

After that, came Mark Durkam MP from Northern Ireland, with whom James and I discussed again the lack of initial support available to carers and also employment law and issues with employers understanding carers. After he bade us farewell, we realised it was 6.15 and the event had finished 15 minutes ago.

The journey home was uneventful by comparison. My only regret? It didn’t go on long enough ……. Oh, and I should have worn more comfortable shoes.

June 21, 2012 Posted by | Health, Hidden carers | , | 8 Comments