There is no appetite within government for putting taxes up – even under Labour in the good times in England, free care was never really up for discussion ( unlike our Scottish friends). With a  Conservative-led administration, and in these austere times, we just have to face facts that it’s not on the table.

So what are the other options? The Nuffield Trust have come up with a few. As you might know  Andrew Dilnot suggested a cap of £35k on the amount an individual might have to pay for their care once they reach “substantial” level of need (this would be lower for people who have care needs earlier on in life. Well maybe we could increase this, but would this reduce the effectiveness of the whole proposal?  We want people to think it’s a manageable amount to plan for so they don’t leave care in their older years completely up to chance.

Other options suggested are redirecting the NHS underspend to care . I’m all for that, but I find it hard to believe the NHS  has all that spare cash sloshing around. We found it hard enough to get them to tell us about the £100m  they were supposed to be spending on support for carers last year. And you know what happens when you discover you might have to give cash back if it’s not spent – you suddenly find a hundred useful things to do with it, so that suddenly – surprise!  – the cash is gone.

The other area they suggest is the one which might be most controversial. They suggest that a lot of benefit payments go to older people who are quite wealthy and don’t really need them, so we could claw some of this back and use it to pay for care for others. I can hear the sharp intake of breath happening in older peoples’ circles all round the country. Whilst in principle I think we all understand that benefits are there to ensure a reasonable standard of living for everyone, and that £100 might be a whole income for one person for a week but might be pin money for someone else, I still think this would cause massive political ructions. I don’t think any politician, particularly  the Tories with the demography of their voting base, will be queuing up for the outpouring of grey rage that would ensue.

The trouble is that whatever sector of the population is hit, someone will object. Of course they will. If it’s carers who are hit I will be first in line to shout the odds  to defend carers’ incomes. But if we all just focus on defending our own patches, nothing will change.

So what’s the solution? If the spare cash in the NHS really exists then, sure,  let’s get out hands on it but even if we do it won’t be enough. I think we all need to ask ourselves some hard questions and decide what price we’re prepared to pay for a fairer system.  So tell me – who do you think should give?

I wonder what it is that is making the district nurses feel they need to go to this length to be noticed. I guess they feel they’re not visible or valued enough, or that their roles are being eroded.  Many are not based in primary care any more – in England at least. GP practices rarely have “their” district nurse and instead there is a team based centrally.

I’m sure there must be benefits, but I struggle to see how this makes sense. We’re splitting apart the key professionals who could  have a quick word with each other, pass on information which they’ve picked up on a home visit, and ensure that links are made on a human level. A nurse from Wales – based in a primary care practice – described this succinctly. When she or a colleague think a carer could do with support, they have a quick word together and whoever is the best person  makes a few calls, nips round, gets it sorted. Simple as. I don’t know why we keep inventing structures which make it easier for people to get lost.

Last night, with the RCN, I ran a workshop on how we can work with nurses to crack this issue of identifying and supporting carers because they are in a key position to pick up when someone is struggling.  We had a reasonable turn out – almost all district or community nurses in fact – and about half the room were also carers themselves. We do well to always remember that carers wear many hats in life.

As well as their stories of caring, they were talking about feeling inadequate if they identify a carer but then have nothing to offer them, or not knowing the up to date information on what’s available. They also described being so rushed for time – time spent engaging with carers figures nowhere on performance targets. Work we’ve done with the Queen’s Nursing Institute, which specialises in district nursing, says the same.

So how do we fix it? One solution has to be enabling district nurses to use their time in a more holistic way rather than just counting the clinical tasks they’ve called round to deal with. Explaining to a carer how to best look after the person they care for, and dealing with their concerns about treatment – those are clinical issues in my book. Supporting carers with their own health and stress issues –  well that too, I would say, is verging on clinical – or at least will likely become so. I don’t see the problem with measuring this and counting it as a valued part of the nurse’s role. Too often it’s someone else’s job, in someone else’s targets. Sometimes someone’s and no-one’s.

I think the problem is that we are often way too focused on counting. The NHS is very keen on counting everything – time, money, and of course I understand why. In the process, however, we sometimes completely miss what it all adds up to.

Another Queen’s Speech and another missed opportunity for reforming the Social Care System. I wish I was surprised, but sadly this Government is rather good at delaying really important decisions or making them far too quickly.

So, the Government has decided that urgently needed Social Care legislation can be put off for at least another year and whilst there will be a draft bill, which offers some hope, it won’t look at the critical issue of funding.  This is bitterly disappointing for everyone who needs social care services and for carers. We all know that real progress can’t be made unless we find a way of paying for it, so why can’t the Government see what we see?

The thing is another year really matters when the system has been underfunded for decades. At this moment, demand for services is increasing and the amount of cash available for care is falling. Somehow, the Government seems to think that people can carry on looking after each other without support or access to affordable and good quality services. They seem to think it’s ok to carry on relying too much on carers and ignoring the truth that the system is broken.

In fact for 64 years, since the National Assistance Act in 1948, the laws affecting some of the most vulnerable people in society have been messy and confusing.  Successive governments have pondered the need for wholesale reform but the issue of funding has been sidestepped every time.

As this government scales back spending on public services and radicalises the welfare system, we are reminded daily that there is no money in the coffers. But not facing up to the funding crisis in adult social care is an incredibly dangerous strategy. We cannot let this situation go on and on until there is no ‘system’ to speak of and carers are left on their own.

This would save the state millions, but is this the ‘Big Society’ we want to part of? Surely, there is nothing fair or sustainable about allowing Social Care provision to diminish and expecting families to pick up the pieces?

What’s more, failing to address the funding gap and make reform a priority means that the pressure on the NHS and health services will continue to grow. It’s a sad fact that carers know, better than most, that failure to meet needs by social care results in a crisis that health services have to deal with – those years of isolation that lead to a breakdown and admission to hospital means extra cost for everyone. Reform also provides an opportunity to integrate health and social care services and to ensure that people receive co-ordinated care.

There is a real risk that time will run out for this Government and Social Care reform will be unfinished business. Before we know it, it will be time for another election and it is perfectly possible that a different Government will then have to sort out an even more dire situation.

We’re not asking for ‘quick and dirty’ law making which will only be damaging, but we cannot afford to loose this opportunity to make desperately needed change to the system. We need to act now and make it clear that older and disabled people and their carers cannot wait. We will not accept any more delays for reforming Social Care.

**Tweet to @Number10Gov using #CareCantWait

This, which I heard about whilst lying in bed having my morning Radio 4 moment, pondering whether I could risk another swat of the snooze button, had me up, hopping mad and ranting at the cat. Whilst I dare say there are people who don’t prioritise their child’s education, the most cursory investigation would reveal that in a huge number of cases there is a more complex story to be heard, often one involving disadvantage, poor support and alienation.

For young carers often it’s not a case of not wanting to go to school. Often it’s a case of not being able to. If you thought your mum might be suicidal today, would you go to school? If the other kids called you names and said your dad was a nutter, would you go? And what if you knew you would get another hammering for not doing your maths homework because your autistic brother spent the whole night screaming? Would you go then? No? Me neither probably.

So many young carers go unnoticed and unsupported, by schools, by health services, by social services, by anyone. Of course school and education is a priority. Young carers deserve the chance to achieve as much as all other children, and many do. Some schools really do their best – having young carers policies and key staff responsible for raising awareness amongst pupils and staff. These schools make sure young carers can achieve, as well as making sure their caring role is reduced by liaising with other support services.

But I’ve met young carers unsupported for years, completely unnoticed by the many health and care professionals coming in and out of their house, and also those who tried to tell their school what was happening, but were given no support at all . Many have been left with the inescapable conclusion that nobody actually cared.

And what makes me most angry in all of this is the staggering inequity of it. If you’re a 2 parent family with an income of£60 or£ 70K or more, then maybe Child Benefit is not quite so critical. But if you’ve got three kids and you’re all struggling, say, on £30K or for many families much less, then it’s an absolutely vital source of income.

Children with one or more disabled parents have a 30% chance of being in relative poverty. So many young carers live in families with low incomes, where every penny is needed. The Eton millionaires inhabiting the Cabinet would do well to think about the implications of what they’re suggesting. If you’re rich, it will have no impact. If you’re poor, it could tip you over the edge. What kind of social justice is this?

Docking Child Benefit would be a blunt, savage, instrument which would impact disproportionately on some of the poorest, most disenfranchised people in our communities. If we want to improve school attendance, let’s start by understanding why kids aren’t going and doing something about that, not by a headline grabbing attack on some of our most vulnerable families.

Related links:

BBC story on “Dock truants’ child benefit, ministers urged“

Child Poverty Fact Sheet

See what carers are saying about this on our forums

These are the choices we all make all the time. So why can’t carers and people with care needs make these choice about care, when they often can’t just go somewhere else? Surely, with something as important as care services it should be no different?  This is the personalisation agenda – ideally making sure people with care needs and carers can have the services they want, the way they want them.

So what’s the problem? Well, despite all the intentions to deliver personalised support, it’s not as straightforward as this.  If the person who the care package is for isn’t able to manage it themselves, this often becomes the carer’s responsibility whose life is often complicated enough, thank you. For those  of you who’ve had the experience of becoming the direct employer of personal assistant, this  can be liberating but also can be a real headache, without the right kind of support.

Worse, in practice, “choice” sometimes doesn’t mean that much. Some local authorities place random rules around how money can be spent  – completely defeating  the point of personalisation.  Like the authorities who dictate that carers who have personal budgets for their own breaks can’t use these to pay fo replacement care. You might have  a budget to pay for your gym membership, or doing up your garden  or your trip to your sisters – whatever is a break for you – but you can’t actually do this because you can’t get away because, you can’t pay for someone to look after the person  you care for.  Where do the national guidelines actually say this? Nowhere.

The other thing is there often aren’t a range services to buy either. If the only service available for someone with dementia during the day is the same day centre there has always been, why make everyone go through the bother of managing it through a personal budget? And the sneaky thing is that sometimes people find they are moved onto a budget and find they aren’t given enough money to buy the service they had in the first place. Hm… does that sound like a cut to you? It does to me.

Bearing all of this in mind, I like to stay optimistic. The principle of personalisation has got to be right even if the mechanisms and support aren’t quite there, but it needs to make people’s lives easier, not more complicated.

At Carers Trust we’ve been working on a programme, together with carers, on how this can all be made a bit less stressful. There’s a film here – it’s great – have a look! The carers involved show it can work, it really can.  But there needs to be proper investment in information, training and support  for all carers faced with managing a personal budget, to make sure this is a positive experience, not a stressful extra complication.

So The Princess Royal Trust for Carers has finally merged with Crossroads Care and we’re now Carers Trust. It’s the time of new beginnings, of opportunity and prospects. Sometimes in this game, I feel like I chase my tail and never get anywhere, so I thought I’d take this chance to reflect on what’s changed for young carers in the last six years since I‘ve been here.

I started work in the sector 10 years ago when I managed a young carers’ service in the London Borough of Barnet. Not only was I responsible for developing the service, and for getting change implemented at strategic level within the borough, but I pitched in whenever needed and have fond memories of driving a minibus around Finchley, Edgware and Barnet ensuring that some of the most needy young carers got a break and met other young carers at one of our after school clubs. We had great support in the borough, but I think it’s true to say that the public perception of young carers and the issues they face was lacking.

Raising awareness of young carers and their families is an intrinsic part of ensuring they get the support and help they need. This has been one of the defining changes I’ve witnessed and it’s thanks to Carers Trust and other national charities, often working together, that this has happened.  I’m not sure where we would be without our six year partnership with Comic Relief. They’ve given us- and the young carers we support- the platform we needed during events such as Red Nose Day and Sports Relief, forcing people to sit up and take notice of an issue which in modern society is sometimes hard to believe. And it’s not just media coverage they’ve helped with- to date, they’ve given us £3.5million, with another £1.5million to be launched this year- helping us to help some of the most needy young carers and families. A heartfelt thank you on my behalf.

If services only ever help the young carer or the person they care for, and don’t address the whole family’s needs, the situation will remain unchanged and young carers will continue to provide care.  So it’s great to see the whole family approach now recognised by most practitioners as the most effective and sustainable approach to use and even better to see it promoted at central and local government level and endorsed in national policy.

Six years ago, there was not necessarily a young carers’ service in every local area. The ones that did exist sometimes felt like they were working in isolation and there was some duplication of resources and reinventing the wheel. Today, despite many funding cuts, young carers’ services remain resilient and committed and Carers Trust now has 112 young carers’ services across the UK. We have a wide range of national resources to help local services, such as our schools resource and outcomes measuring tool, and our work continues.

It is thanks to colleagues across Carers Trust and beyond, to inspiring and innovative young carers’ workers up and down the country and across our nations, to social care, health and education practitioners, and even to members of the public, that we have achieved so much.  But as always, there is still so much to do.

Take care,

Danni

A note from Moira:

After an amazing 6 years, Danni’s heading off to exciting new challenges at the MS Society. All of us at Carers Trust would like to say a massive thank you to her for her work for young carers – it’s made a real difference and we’ve been proud to have her as our colleague.

Thanks Danni – and good luck from us all!

It’s been a big job. Merging charities is no small deal. The number of legal complexities and things you never even knew   needed sorting out has been immense, as well as  consulting Carers Centres, Crossroads schemes and carers on how it will all work. Well done to our project managers and legal and financial eagles for getting us this far – it’s too important to get anything wrong. The merger is at a national level, and locally Carers Centres and Crossroads schemes will stay separate organisations as they are now, although many do work closely together.

From my immediate point of view, the pluses are evident.  Firstly there’s the benefit of not taking 10 minutes to introduce myself at meetings  – “Hello I’m Moira Fraser and I’m director of policy at The Princess Royal Trust for Carers and I’m also here on behalf of Crossroads Care” is a bit  of a mouthful.  But more importantly, when I sit at the table with Ministers  and  MPs the bigger and more cohesive our voice is, the better we will be heard. Our two organisations have worked very closely and successfully  together for years on policy and campaigning issues like carers breaks, and this is the next step in our positive relationship which will help us hit even harder with our messages to politicians and decision makers.

I know many will be sad to lose the brands of the charities we have known  for many years – I have been proud to work for The Princess Royal Trust for Carers and  I know my colleagues feel the same, about both organisations . Very happily The Princess Royal will continue to be a strong presence, and she’s absolutely behind the merger because of the most important thing – it gives us a louder voice and it builds a stronger organisation for carers.

It’s going to be a hectic week and I’m going to enjoy one or two more opportunities to take 10 minutes to introduce myself at meetings. But as of next week I’m going to be just as proud to introduce myself as policy director of Carers Trust. Here’s to an exciting future,  one where  we use our combined strengths and passion  to work towards making  sure carers get the support they need.

There is so much that the NHS and others can do to make this, which will always be a terrible time, as least awful as possible but too often families and carers are left to struggle. If you can call me lucky, (and to be fair I don’t feel all that lucky), the doctors and nurses that supported me and my family were fantastic and made something so awful much more bearable.

Last year, an independent review of palliative care was carried out, looking at the way people with life-limiting or life threatening conditions, and their families and carers are supported. Our system is a mish-mash. Some services are funded by the NHS, some by charities,  and some paid for by individuals and families themselves. Many people don’t get the service that would be best for them if they had the opportunity to choose from all the options.

If a local hospice is the place that you and your family feel is right, that’s where you should be able to spend that precious time. If you think hospital or a care home is the best place, again that’s what should happen. If being at home is right for you and your family, then that should be made to work with the right kind of help.  There is a push to ensure more people die at home than in hospital – generally what people want – but often not enough support for families. Without the right kind of support, carers and families often can’t cope. The person ends up being readmitted to hospital as an emergency, and sometimes never comes home again. Not what anyone wanted.

If you and your family do decide being at home is the right place, then effective support needs to be available 24-7. How many times are we told help will be on hand only to discover that the office is only staffed 9 to 5? If it’s 2am, how are you supposed to manage until the morning? Crises don’t just happen in office hours.

Yesterday, the Government and Marie Cure Cancer Care announced funding for pilot sites to explore what better support for people at the end of life would look like and how this can be made to work. Although it’s easier not to think about it, this is one thing we’re all going to have to confront eventually. We need to make sure that when we’re facing this one great final leveller, there is the equity of support to make it no worse than it has to be – for the person themselves,  of course, but also for their families and carers.

Moira

Note:

We are supporters of the Dying Matters Coalition. More information is here

Lynn Williams at work

As policy officer for The Princess Royal Trust for Carers in Scotland and an unpaid carer, I have a dual interest in policies which affect unpaid carers and their families.  Having gone through social care services recently with my husband I find myself very interested in the Scottish Government’s recent announcement of plans to integrate health and social care for adults in Scotland. The initial focus will be on older people.

At the heart of this announcement is the recognition that the current set up through Community Health/Care Partnerships has not worked as well as it could have. There is also a recognition that for many families, it is easy to get lost between services e.g. during discharge from hospital – and that sometimes it’s easier for families to give up when they cannot make sense of what is out there. 

As the Scottish population gets older, social care and health services must work together more effectively. Is this announcement about saving money?  Partly, but the Deputy First Minister, Nicola Sturgeon, has made it clear that she wants integration of health and social care to be about better services for older people and those who care for them.  See here for the official record of a recent debate on these issues

Planned legislation will create new health and social care partnerships under one accountable officer. Legislation will also create mechanisms for health and social care to integrate their budgets.  There will be a strong focus on clinicians and professionals as experts in the new set up – very important but what about unpaid carers and the expertise they have?  Already, the focus seems to be on structures, on finance, on staff roles and  it will take a lot to make integration happen.

I represented The Trust and gave evidence to the Health and Sport Committee at the Scottish Parliament this week. The Committee is undertaking a brief enquiry into integration prior to the Government publishing its plan.  

In amongst the nerves I felt in giving evidence, I hoped to make clear that whatever the plans look like, we cannot lose sight of what matters the most – the families and unpaid carers who rely on services provided by health and social care. I also emphasised the fact that integrated services will not work without taking account of the needs of Scotland’s 650,000 unpaid carers and the £10.3 billion contribution they make each year.  Unpaid carers and supporting them in their role must underpin the Government’s plans.

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

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

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

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

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

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

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

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

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

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

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

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

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

Well I’ll drink to that.

Moira