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

So 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…

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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.

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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 Carers.org. For further information, please contact me: Emma Smale, Senior Policy and Parliamentary Officer, esmale@carers.org

Triangle of Care: inspiring carer involvement in mental health standards

It feels sometimes like I live, sleep and eat the Triangle of Care, as the project which I lead on nationally goes from strength to strength.

For those who haven’t heard of the Triangle of Care this is a set of standards establishing a therapeutic alliance between the mental health professionals, the carer(s) and the service user(s).

Over the past two years Carers Trust has held regional events in all parts of England, given presentations, developed leaflets, promoted the project to MPs and set up a membership scheme that mental health providers can join.

As we enter my third year of working on Triangle of Care we have got 48 mental health trusts involved in the project and 11 of them have signed up to the membership scheme.

With so many professionals, carers and third sector organisations involved in the project across England (and now I’m delighted to say Scotland) I felt it was important to offer them an opportunity to come together and share their knowledge, ask questions, find out what is working in different areas, share their challenges and most importantly their successes.

Last week we held a two day event in Manchester to offer this opportunity. Over 100 people attended the event which – even if I say so myself – was a huge success; we even had a waiting list, the event was so popular!

The two days packed a lot in – we had presentations from Network Partners who have worked together with their statutory mental health provider to drive forward the Triangle of Care and another from mental health providers talking about their journey to carer involvement and joining the Triangle of Care scheme.

We had a presentation from a carer involved the Triangle of Care implementation in Sussex and spoke positively about including service users in this work; demonstrating the Triangle of Care in action. In addition we had an inspiring presentation about implementing the Triangle of Care in a high secure setting – which I believe shows if you can do it there you can do it anywhere.

As I live and breathe Triangle of Care it is sometimes easy to underestimate the extent of the work that is taking place across England and how passionate people are about the standards of the Triangle of Care and trying to ensure that carers are involved and supported in mental health care.

I hope those who attended will be able to go back to their organisations and localities re-inspired and re-invigorated to work to ensure carers are included and supported and ultimately I hope that this is another step towards a cultural shift in how carers of people with serious mental health problems are included and supported by mental health services.

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Were you at our Triangle of Care event? Share your feedback in the comments below. If you weren’t there, you can catch up with highlights of the event from Twitter via our #Triangleofcare Storify.

Local NHS Commissioning — the upheaval begins

In my head, CCG may well stand for Clinical Commissioning Group, but it increasingly also stands for ‘Commissioners Coming and Going’.

Local organisations have to work with a whole range of commissioners – local authority and NHS – to keep themselves viable. With all the changes and cuts in recent years, no sooner have local services made relationships, building up their local profile and making the case for carers, than that person is off and it all starts all over again.

So now, one month in to the new arrangements for NHS Commissioning, what does this mean on the ground? A new dawn of choice and options, or chaos and confusion, or just simply no change?

Below, the CEO of one of a large Carers Trust Network Partner says how it is for them…

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Well, the morning came and the biggest change to NHS commissioning did at least make BBC headline news, after the biggest changes in welfare benefits story.  April 2nd was the start of a new era of GP involvement and more locally relevant commissioning and also, hopefully, a big step towards the end of a lot of uncertainty during the 2 years since the announcement.  Am I being too optimistic, I wondered?

Our area has a large Clinical Commissioning Group with many Local Commissioning Groups (LCGs) and we have had a top level transition/shadow team for 12 months. This has meant lots of new faces, structures, Terms of Reference and priorities emerging.

Everyone’s had bigger fish to fry though, starting with their own jobs; plus high level priorities and budgets. At least the decision that many services in the budget for 2012-13 carried over to this year’s budget (including ours), took some pressure away from trying to get valuable services recognised by a new audience, quickly.

That’s still a problem throughout our voluntary sector, from talking to colleagues — who in ‘Health’ they need to see and how to do that physically, when we have no central carers lead and carers services devolve to the LCGs.

Is this because carers weren’t in their mapping? Won’t this mean losing economies of scale and synergies and replicating bureaucracy?  But the positives could be more innovative and decisive and integrated commissioning than traditionally seen in social care. Am I just trying to be optimistic?

The CCG has an action plan and the Voluntary Sector were late invitees to the Joined Up Service Transformation workshops and have made it into the top 11 priorities for the CCG. But we need to be innovative and offer more joined up and single point of access services ourselves, to succeed and be commissioned effectively. Are commissioners being too optimistic, I wonder?  Will they go elsewhere?

Two events help shape my early thinking. Our LCG-led bid to extend an existing service to all parts of the CCG fails. The new criteria are very heavily weighted at evidenced cost savings (even more than previously), but we get the feedback that “the powerbases are moving” and there’s time for “corridor lobbying” before trying again. Who, what and when?

Optimism is receding… then I hear from a former GP who attended the first Public Meeting of the Governing Body of the CCG. She detected a huge cultural shift from her early experience of trying to engage GPs as part of the ‘system’ in the  early 90s and also in the PCT with the professional executive committee of GPs in the early noughties. “These GPs seem prepared  to engage with the concept of being responsible for the population, not just  their individual practices.”

Pragmatism must be the answer. We all want the same outcomes, so must keep working – people to meet, places to go!

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CEOs of Carers Trust Network Partners will be blogging for us throughout the year telling us what the changes mean on the ground. Much more to come!

Better Carers Assessments: a gateway to support

I’m a person who has hobby horses. No, I don’t mean the toys, but issues that I keep coming back to because, in my mind, they are just so obviously important. And at the moment, one of my hobby horses is carers assessments.

Carers assessments in some places have a bit of a bad rep. Many carers say they don’t know if they’ve had one, or if they have, they feel nothing really came of it.

There are lots of issues here. The term  “assessment” is problematic. Some carers worry about this and think they’re being tested and might be told they’re not good enough. Others feel it’s just a tick box process and their needs are not being taken seriously.

However, what I feel passionately about, is that if a carers assessment is done well it has the potential to be a really positive experience. For some carers it may result in the provision of a service or a personal budget, but for others it might not. It should nevertheless result in the identification of what support and resources could help, and the chance to talk through what is working and what is not. Sometimes this might be the only time a carer might feel anyone is listening to them and their needs, so it’s important this is done properly.

The draft Care and Support Bill opens up the way for more carers in England to have access to a carers assessment, and so it’s an opportune time to be thinking about how we can ensure theyare done well.

Carers Trust has been working with Skills for Care to find out more about what carers think on this matter. We carried out three focus groups, and the keys things carers said were needed were:

• An assessment where there is a clear outcome. Carers welcomed receiving a note of the discussion and a clear menu of support options, whether these are general or universal sources of advice and support, and/or more in-depth support. A creative outcomes-focused approach, exploring a broad range of ways in which needs are met, is valued. This feedback should be received quickly after the assessment.
• A positive, courageous and exploratory approach. Carers value an approach which looks beyond the day to day coping mechanisms  to tease out problems, whilst recognising the skills and expertise of the carer. Most carers said they had no trouble taking about what they can do but have difficulty expressing where they are struggling or need help. Sensitivity and courage is needed on the part of professions to talk through issues such as whether the person is willing or able to continue caring and putting together emergency plans.
• Clear communication. Clear communication is needed before, during and after the assessment so that carers feel they are clear about the purpose of the assessment, the choices available to them and the whole process. They also need to feel like they are treated as experts who bring a great deal of skill and knowledge to the caring role, and are able to make their own decisions.

You can see our report here. Perhaps none of this is a surprise, but it is a concern that carers often felt these things weren’t happening.

An assessment is the gateway to wider support, and can be the foundation of an ongoing dialogue so that carers know that they are valued as an individual, not just as a provider of care, and there is support there if they need it.

How do we make sure this happens? Well that’s the next project. We’ll keep you posted.

CCGs: a voyage into the commissioning unknown

The 1st April was for many of our local partners—carers’ centres and schemes who support hundreds of thousands of carers across England— approached with some trepidation.

In recent years Primary Care Trusts have had responsibility for commissioning services to support carers. Carers Trust and our local partners have worked hard—and pretty successfully I have to say—to make the case for supporting carers, explaining how putting comparatively small amounts of money in can really make the difference between carers being able to cope and maintain their health and wellbeing, or becoming ill or the caring role breaking down. If a carer is unable to keep caring, believe me, it costs a lot more.

Starting from scratch?

We’ve spent years documenting the evidence  showing how providing information and advice, breaks from caring, supportfor GPs to identify carers, and high quality replacement care can make a real difference, and in some areas of England, it is possible that little may change.

However, where there is a complete change in commissioners and decision makers, we may well have to start from scratch, making the case all over again. Very frustrating.

Already we are hearing that some of the new Clinical Commissioning Groups (or CCGs) are giving notice on contracts for local carers’ services as they intend to review all the services they commission. This is incredibly destabilising. We will keep making the case for carers, and we know our local partners do a brilliant job and will battle through this. But  if commissioners don’t understand why supporting carers is important  we could be in for a bumpy year.

Watch this space

During this year of change, some senior staff from carers’ centres and schemes  are going to be blogging for us, writing about their experiences, so we can see what all of this means for those who are trying to make sense of it on the ground.

They’ll  be writing about their hopes and fears, whether the structures are becoming clearer or more confusing, and what the impact of all of these changes have been for them, their staff, and carers and families locally. We’ll all learn from the stories they have to tell.

I have a deep feeling of unease about the year ahead. I  hope that for many, if new structures and contracts are needed these are put in place quickly to secure their future  and stability for a number of years ahead. I fear, however, it’s not going to work quite like that everywhere

What do you think about the NHS commissioning changes?  How are they affecting you?

Keep reading over the next year to hear what our band of bloggers have to say.

Changes to the legal aid system: what carers need to know

Guest post: Maia Lask from the Save Legal Aid Campaign tells us how changes to the legal aid system could affect carers’ benefits—and the importance of seeking help before the new tax year on 1st April.

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On April Fools’ Day – April 1st – this year, there will be huge changes to the way the legal aid system operates. As of April 1st, legal aid will no longer be available for several areas of law, meaning that in these areas you will no longer be entitled to free legal advice. This means that if you cannot afford to pay for legal advice, and you have a legal problem, March is the time to seek help!

For carers and their families, one area that is particularly concerning is the removal of legal aid for benefits appeals. This means that from April, if you want to challenge a decision on benefit entitlement, you will no longer be able to get legal aid to do so. The government’s own Equality Impact Assessment into the impact of the legal aid cuts found that 58% of people seeking legal aid for benefits advice are disabled, meaning that disabled people and their families will be the group most disproportionately affected by these changes.

What this means for carers’ benefits appeals

This will have a real impact on problems faced by disabled people and carers. For example, there was a case in the Court of Appeal last year about an individual who required a full time care worker, meaning that he needed to live in a two-bed flat to accommodate them. Because he was living in privately rented accommodation, the Housing Benefit rules assessed him, as a single man, as being only entitled to the Housing Benefit entitlement for a one-bedroom flat, leaving him with a huge shortfall in rent.

In the same appeal was the case of a family with three daughters, two of whom were disabled, and therefore unable to share a room. The family therefore needed a four-bed house. As the girls were both young children and expected to share a room, however, the Housing Benefit entitlement for the family was only for a three-bed house, leaving this family with a similar shortfall in rent.

Using legal aid, the decisions on Housing Benefit entitlement in both of these cases were appealed to the Tribunal, and eventually all the way up to the Court of Appeal, which decided that the way that the rules worked was unjustifiably discriminatory to disabled people. It is the ability to appeal precisely this sort of unfair decision using legal aid which will be lost on April 1st.

If you need legal advice—act now

So if you have any concerns about your benefits which may require legal assistance, remember to do it before the 1st April, whilst free advice is still available. Spread the word to your friends, family, colleagues, and anyone else you know who may be in need of legal advice. So act now, seek legal help with your problems before April 1st, and don’t be an April fool.

For more information on the impact of the cuts, and the other areas of law which are being removed from scope, go to the Save Ledal Aid website.

To find your nearest legal aid lawyer visit the Government’s legal adviser finder page.

Young carers firmly on Children and Families Bill agenda

After 6 months of working  behind the scenes putting together the evidence, the Children and Families Bill finally hit the House of Commons recently, in the form of the second reading debate.

Emma, our Senior Policy and Parliamentary Officer, has been working her socks off getting briefings written and circulated to MPs to let them know what they need to do to make a significant change for young carers.

The odd thing is that usually when you write a briefing, you’re writing about what’s in a Bill—not what’s absent. And that’s the thing: the Bill is absolutely silent on young carers. Unless some amendments are added in, we’re going to end up in a situation where adult carers’ rights are improved (a good thing, of course) but young carers’ rights are left behind. This is untenable.

Work of National Young Carers Coalition pays off

We have spent months meeting with officials and the Minister, and with our partners in the National Young Carers Coalition (which includes Barnardos, Family Action, Action for Children, and The Children’s Society), and I like to think we are becoming a force to be reckoned with.

We’ve had positive words of support. The Scrutiny Committee of the Care and Support Bill, in a recent session, made it very clear that they think we’ve got a very good point.

Still, it wasn’t guaranteed we’d get a good hearing. There were lots of important issues debated today – adoption and fostering, special educational needs, family justice – all things that need their air time. But it was fantastic to listen to the debate and hear the support for young carers.

Encouraging words of support from MPs

Barbara Keeley MP, a real champion for carers, managed to make a point during the Minister Ed Timpson’s speech, which resulted in him acknowledging the importance of the issue and saying that he would “continue to listen” to us.

This may not sound like much, but in parliamentary language it means there’s at least a chance we might get somewhere with this. And responding to the Minister’s speech, Stephen Twigg MP laid out that we can’t have a position where young carers have lesser rights than their adult counterparts.

Many other MPs spoke. Some had more time to spend on this issue than others, but we’re grateful to all who showed their support. The next step is Committee stage where we’ll need to push the amendments we need – and we will need strong parliamentary pressure, so if you care about this, write to your MP.

There’s a long way to go yet and today was only the beginning. But it was definitely a good start.

GPs need more incentives to identify carers, not fewer

One of the things we know about carers is that many often don’t recognise themselves as being one — in other words, they don’t realise that they are a carer. They don’t know about available help until quite late on, often after their own health and wellbeing has become badly affected.

Especially for adult carers, we know that the one service they are almost bound to come into contact with is GPs, if not for their own health then for the health of the people they are caring for. So it makes sense that GPS should identify carers and refer them to their local carers organisation for support.

That’s all they really have to do. It’s as straightforward as saying: “Well Mrs McGonigle, you’re doing a brilliant job of looking after your husband but I’m wondering whether there are things we could do to help you too. Did you know there’s a Carers’ Centre that can give you some help? Here’s the number. Why don’t you call them? And I can add you to my list so we can make sure we support you as a carer.” Sounds simple, huh?

Simple as it is, it often just doesn’t happen.  GP surgeries get a payment for having a carers’ register. 10% of the population are carers  — however, even when GPs are being proactive, it’s rare for a practice to have more than 3% of their list registered as carers.

Signs of progress

Across the country, Carers’ Centres and Crossroads schemes work with GPs surgeries to provide them with what they need to support carers better, and real progress has been made. The Government put some cash into this, and Carers Trust has been working with The Royal College of GPs and Carers UK to build better awareness.

For those of you who work for a Carers Trust network partner liaising with GPs surgeries, you can join our Facebook group where staff in similar roles share good ideas and support each other.

But things are changing. The indicator which means GPs get rewarded financially for having a carers register (QOF Management Standard 9 I believe) is being removed. Something similar will stay for carers of people with dementia, and it is suggested that they will also get a health check.

Getting GP practices engaged with carers

This is great, but what about everyone else? There are plans to put the requirement to identify carers in the outcomes indicators for Clinical Commissioning Groups but it’s not clear to me what teeth this will have, or whether practices will just be able to ignore it with impunity.

The current system isn’t great. It’s not well used, and it means GPs can identify a few carers, put them on a list and then do nothing to support them. But at least they do have to come up with some evidence at some point that they have met the outcome and they do it because there’s money attached.

It gives local carers’ organisations the hook they need to get GP practices talking to them. If the CCG outcome indicators have no teeth, that will be a step backwards. We need to know more.

Getting the Care and Support Bill right for young carers

As you’ll have seen if you read regularly, we are pleased that the Care and Support Bill recognises the importance of carers and getting them assessed, and ensuring they receive support. All of this is very welcome. The law as it stands is all over the place and confusing so the proposed consolidation will really help.

However  there are a couple of areas which we’re not so happy about. In law, children’s issues and adults’ issues are usually dealt with in different pieces of legislation.

This means that although the Care and Support Bill will improve things for the majority of carers in England, it leaves carers who are under 18 or who are parent carers in the same situation as they are now, except it will be even more confusing.

We can’t have a situation where some carers have greater rights than others – it’s unfair and it just makes no sense . It particularly makes no sense if one of those groups with lesser rights is children.

We’ve been working hard on this and it does feel like we’re making some progress. I gave evidence to the Scrutiny Committee of the draft Care and Support Bill last week – you can read the uncorrected transcript here . The Committee was keen to hear what impact the proposals would have on all carers, and were concerned that young carers have been left out in the cold.

I explained that we need two pieces of legislation which talk to each other thereby making a joined up system. The Bill for adults should ensure that someone who is a parent has any needs for their parenting role as well as their independence and wellbeing met.  But children’s legislation also needs to identify, if services are working with a child, where there is a parent who is not receiving support that is needed, so that adult services can ensure that support is provided – otherwise there will continue to be care needs which the child has to meet.

The risk, if we don’t take a strongly preventative and joined up approach, is that we just accept young people’s caring roles rather than asking the question of why they are in that  role, whether they should be, and whether this is having a negative impact on them. They are children, first and foremost, and our responsibility is to ensure they have the same chance to learn, develop and thrive as any other child.

It seems like the Government is listening. Officials at the Department of Health and the Department of Education are now talking to each other to try to sort this out,  and yesterday, with colleagues from Barnardo’s and The Children’s Society (we are all part of the National Young Carers Coalition) we had a positive meeting with Edward Timpson MP, one of the children’s ministers. He took on board what we were saying and has requested we continue to put together the evidence for change so that we can try to find the best way forward. This is sounding positive, although we’re a way off the solution yet.

In my job, it’s sometimes hard to see progress – often it takes years of pushing at an issue before any change. And for young carers it has taken years, but finally the moment for action has presented itself. We hope the Government will grasp this opportunity.

Bring on 2013 – except if you’re on benefits

I hope everyone had a fabulous Christmas. 2012 was a year of many changes, both here at Carers Trust and in real life.

Policy-wise we had some highlights. Seeing a draft Care and Support Bill with carers not only mentioned, but forming a central plank of the whole Bill was a real boost. But all that is against a backdrop of increasing cuts which takes the wind out of the sails of any progress.

The cuts are coming from all sides, and I guess there’s no way of escaping. But it seems like carers and disabled people seem to be taking hit after hit after hit – way more than a fair share.

Food prices are up, gas and electricity prices up, transport and fuel prices up, and VAT at 20%. No-one escapes this. Few people in work are experiencing increased income in line with the cost of living, meaning most people are going through a real-terms cut, year after year.

Concerns over welfare benefits uprating bill

To top it all, the Government decide that people on benefits might as well live with this too. The welfare benefits uprating bill is in Parliament, and MPS voted in favour of taking it forward in the second reading debate last week.

We were told that disabled people would be protected – and Disability Living Allowance, Carers Allowance and people in the support group of Employment and Support Allowance will continue to have these benefits increased in line with inflation. However, those in the ESA work ready group will have their rises limited to 1%, and other non-disability specific benefits such as Housing Benefit will also be limited to 1%.

These are cuts. Despite the promises, disabled people and carers have only been partially protected. You can find out how your MP voted here (scroll down to the second vote, Division No. 129 at 7.13 pm).

If you don’t like how they voted, you should write to them and say so. (NB – check your MP’s name in the AYES and the NOES list on the above link. If it appears in both, it means they effectively cancelled out their own vote – this is the traditional way of abstaining.)

Not all carers exempt from benefits cap

The other issue which will come into play is the cap on benefits. Inexplicably, carers – even those acknowledged as having entitlement for Carers Allowance, spending 35 plus hours a week in a caring role – will not be exempt. This means that what they receive each week, if they are not classed as living in the same household as an exempt person, will be limited.

This will have a massive impact on carers, particularly those in areas where housing costs are high, such as London. The only option for those carers may be to stop caring so much and work instead, or to move to another area – perhaps meaning they are far away from the person they care for. This makes no sense to anyone.

For people struggling to make ends meet already, these week on week reductions in income will have an extremely painful impact. Last October, at Conservative party conference George Osborne made it clear more cuts were coming so this won’t be the last.

Carers Trust will of course, be supporting the Hardest Hit campaign trying to ensure carers’ voices are heard, but it’s going to be tough. Welcome to 2013 folks.