This week, all of the organisations involved in Carers Week – including Carers Trust, Carers UK, the MS Society, Age UK and others – went to Whitehall to launch the Carers Week quest. The aim this year is to really focus our minds – not just amongst carers charities, but across the NHS, local authorities and other charities. We need to work together locally as well as nationally because although we know there are around 7 million carers in the UK, the vast majority do not get anything like enough support. Continue reading
It’s been quite a year for carers. Ups as well as downs. In the Carers Trust policy team we’ve been running from one thing to the next, trying to make sure that we cover as much as we can in this ever changing political environment.
This has meant working with other charities and partners as much as possible so that between us, carers’ views are heard and we can achieve the most change we can. Many thanks to all our friends and colleagues in the Carers Trust Network across the UK, The Care and Support Alliance, the National Young Carers Coalitions and local and national government, politicians, researchers, and other friends. A special big thanks to Carers UK, the Childrens Society and Barnardos for their partnership and support this year. Together we all achieve more than we ever could on our own. Continue reading
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. Continue reading
I didn’t think I could get away this week without a reference to that small sports event which you might have heard about. Living about a mile down the road from the Olympic Park , it’s been hard to miss the build up over the last few years. Now that it’s finally here, it’s quite surreal. On Friday night, I went to the “other” park in Stratford, to watch the opening ceremony on a big screen with , it seems, most of the rest of east London. It was fantastic – a genuine sense of excitement and pride that all this is happening in our home town as well as a competition for which nationality could cheer their team the loudest . (GB won – home advantage. India and Jamaica ran well to claim silver and bronze.)
Danny Boyle’s extravaganza was breathtaking , and has gone down well, if leaving some or our overseas friends a little bemused. I , for one, was delighted with the section on the NHS. It’s absolutely right that we should take the opportunity in front of the world to say that our NHS, born in times of terrible hardship, and based on values which perhaps only something as terrible as a World War could have brought to the fore, is something that we should be proud of.
So few other countries can emulate it. I can tell you some stories where the NHS has got things wrong, but I can tell you more of when it has got things right. When my family have needed it , it’s been there – no Visa card required. No-one had to sell their house or ask friends and family for money. We all paid for their care, as we will do for others who need it. I’m proud to live in a country where people don’t die because they can’t afford healthcare.
However, whilst all this was going on, I was also thinking about social care. I’m also proud of the many good social workers and care staff out there, and also family carers, who nobody is dancing in Olympic ceremonies about. Social care is not free for most people, unlike the NHS, but it’s no less needed.
I don’t know how social care got missed out of the party when Nye Bevan’s vision for meeting the health needs of our country was born, but it did and it has never caught up. Our chances to change this with the draft Care and Support Bill will address some inconsistencies but will stop short of the ideal, by a long way. Until such time as we can guarantee that, whatever our needs are, whatever our means are, and whatever family support we have, we will be able to live a dignified and fulfilling life, our social care system will not be fixed.
I hope you’re enjoying the Olympics, and here’s to the success of all those athletes giving their best. And somewhere, not very far away from the main action at the stadium , I won’t be winning any medals and there probably won’t be any fireworks, but I’ll be doing my own little dance for social care.
Enjoy the Games everyone.
This week has been a prime example of the hide and seek game we have to play in policy work. The draft Care and Support Bill was published the week before last, and as I mentioned last time, actually has lots of good stuff in there for carers generally. No money, of course, so what it means in practice is debatable ( rights without resources are not a great load of use), but it was at least a start.
So, like many others in the sector, we said we liked the carers bits but if the Government could get on with sorting out the cash issue, that would be much better, thankyouverymuch.
But in between all of this, emails were flurrying around because, although we could see that rights for adult carers might be improved, it is clear that young carers will still be treated separately. We were worried that they’d been missed out altogether and that all the rights for young carers that we’ve all fought for might disappear.
Over the course of the week, Emma our senior policy officer pored over the text of the draft Bill, working out clause by clause what we think it means. All of us involved with young carers’ work emailed and phoned, sharing information, working out what is what. And then we got a helpful email saying how it’s going to work – the new Bill will only deal with adults, or young carers approaching adulthood. Young carers law will remain the same, which means that little will be actually lost, but this means that procedures for young carers will be different from adult carers. This will just cause confusion, and there’s plenty of that already. It means we will need to follow up our work on this Bill with working for change to children’s law in the future to make sure law for young carers matches law for adult carers. So another big job to add to the list.
A real concern is that we can’t just look at young carers in isolation. We need to make sure that when an adult community care assessment is carried out, then a young carer’s assessment can be triggered if there is a young person there who may be taking on a caring role. We need to reduce inappropriate caring roles, ensuring that the needs of adults are being met and not forcing a young person into a caring role. This means working in a preventative way, not waiting until a young person gets into difficulties and their life is being negatively affected, with the impact this can have on their education, and their life.
If we wait till someone comes forward for a young carers assessment, it is often too late. We need to get in there early and make sure young people get support early, working with their whole family. If we don’t link adult law and children’s law adequately, and make sure they work well with each other we will end up with systems which people don’t understand, don’t work well together, and just assess young carers in situ, accepting their role rather than taking all the opportunities we can to reduce inappropriate caring.
The draft Bill doesn’t intend to reduce rights for young carers, but we’re worried. Young carers rights shouldn’t been an afterthought to be sorted out after the main show is over.
The theme of Carers Week this year is “In sickness and in health.” You can look at that from all sorts of points of view. Obviously the quotation is taken from marriage vows, and for those people caring for a partner, but no less for those caring for parents, siblings, children, or friends, you’re there alongside each other through thick and thin. So the theme of Carers week might prompt you to reflect on the good times and the bad, the positive times and the difficult times. We don’t just discard someone when they’re ill, disabled or frail – we’re in it together.
But no-one’s saying that’s easy, and if you’re the person providing the care, it can feel unending, exhausting and frustrating some days. And things are getting worse- services closing with cutbacks, and less benefit money available. The research carried out for Carers Week found that 84% of people never expected to be a carer – and who does? Caring is something that generally comes unexpectedly – sometimes it happens overnight, or sometimes if develops slowly, depending on the situation of the person you care for.
Many carers feel sad for the different future there might have been, or sometimes the person they feel they’ve lost. Despite this, few carers walk away –not completely, at least although many sometimes wonder what would happen if they did. Carers Week is a chance to recognise the millions of carers who, through thick and thin, good times and bad, are there to care.
Thank you all, so much.
But it’s not just about the health of the person who has the care needs. Carers often put their own health on the back burner. Things need to be done, and perhaps there’s no-one else. So you get on with it, just do it, even though you’re exhausted, even though you’re feeling ill or really low. The problem is that if you’re exhausted, and you get ill, then who’s going to care for you, and the person you care for?
It’s hard to prioritise your own health. Many carers find it hard to take a break and even getting to doctor’s appointments. Having the mental energy to make an appointment, with all the messing about that entails is sometimes just another hassle that carers can do without.
With 10% of the population having a caring role, and the huge levels of poor health within the caring population, the Government needs to address this differently. We need to think of this as a public health issue. We know about lots of factors which make people unwell – lack of exercise, poor diet, smoking, drinking too much, as well as the social factors that are linked to this. The Government realises it needs to address those as they not only cost the NHS but they also on people’s ability to work, and so massive campaigns are funded. But where are they putting the resources in to support carers’ physical and mental health? The kind of money that would really make a difference?
I know there’s not a lot of money about. But saving money at the expense of carers’ health, whilst expecting them just to pick up the pieces left behind by the reduction in services and decimation of benefits, is no kind of saving. Carers already give up so much to help another person. They shouldn’t have to wreck their health too.
Carers Week http://carersweek.org/
There are campaign materials available for carers – template letters/emails to MPs, GP surgeries and for politicians to send to local authorities/CCGs/health trusts etc. Download campaign templates here
We talk a lot about “hidden carers” – the thousands of carers out there who are not in touch with any kind of support. I wonder what a “ hidden “ carer looks like. Are they in camouflage with faces painted in green and brown, with khaki trousers and hat with twigs on? Or are they like Harry Potter with an invisibility cloak? Well, I know some carers feel like they’re invisible, at least.
The truth is that they’re not hidden at all. On every street in every town there is at least one carer. They might not call themselves that, but they’re carrying out caring roles, looking after people who need them.
This isn’t an invisible thing to do. Looking after someone involves taking them to appointments, or to school if they’re a child, getting help from care services for them, doing their shopping, getting their prescriptions, making sure they get out and about and take part in the activities they need to keep them healthy and happy. None of this is invisible or hidden. In almost all these activities, there are people who can see there is someone there, providing significant support to someone else.
However, just because it’s visible doesn’t mean it’s always seen. If people providing these kinds of services aren’t thinking “carer” then perhaps it just doesn’t cross their mind to ask if someone is doing OK and whether they are getting the support they need. Maybe they don’t think it’s their job and perhaps sometimes they don’t want to feel like they’re interfering. It is quite a personal issue after all. But as one carer once said – I just wanted someone to ask: “How are you?”.
Of course not every carer will want help from an external source, and this is absolutely fine. The other week, I spoke to a carer who looks after his daughter who has a physical condition which needs painful daily treatment. He just regards himself as a dad and this as his job . But if he does need support, now or in the future, at least he now knows we’re here and what kinds of help we can provide.
So what we need to do is make sure being a carer is something we’re not scared to talk about publicly and we all see supporting people in their caring role as our business. This means we need to get beyond the people who already think of themselves as a carer, out to the wider population of people who think they’re “just” someone’s dad, or mum, or daughter, or brother, or neighbour, or friend. This week – helping to kick off Carers Week – in partnership with Sainsbury’s we’re working with some Carers Centres in London to raise awareness amongst carers locally and give them a chance to find out more about the support that is available, even if they don’t think of themselves as a carer already. If it works, we hope to roll this out more widely.
It’s great that an organisation with as wide a reach as Sainsbury’s sees the importance of carers and is prepared to put so much work into this. If they can, surely others can too .