Charles Lamb, who lived around the beginning of the nineteenth century, was in his day a very well-respected essayist and critic. He is largely ignored today, but his is a story worth telling, particularly here. Because Charles Lamb was an early example of today’s carers.
His sister, Mary Lamb, had a breakdown at age 32. She went to an asylum for seven years, and when she left she lived with Charles for the rest of his life. He put his career on hold to care for her and never left her, even for a day. He helped her live as independently as possible, and included her in his writing. In their 60s they moved to a tiny cottage in Edmonton, and only after their death was their dedication to each other revealed in their diaries. All through his life he cared quietly, stoically and lovingly.
The same story is played out in countless homes today. People look after their friends and relatives with absolute love and loyalty. Theirs is an unspoken gift. But it is one that Carers UK helps with.
I want to help you despite all challenges, and to do all I can to support you.
What really struck home for me was when I met the relatives of the residents at Winterbourne View. Steve, whose son was at Winterbourne View, had raised concerns but they were ignored. He felt guilty that he couldn’t do anything for his son. That he felt guilty when public services let his son down is totally unacceptable.
Similarly with the Liverpool Care Pathway, there were too many stories about clinicians ignoring the concerns of families. When someone has a bad experience at the end of their life, it will have a terrible impact on the family of the bereaved. We must learn from this.
Confidentiality clauses are too often used to keep vital information away from carers – who better to speak to than them.
Parterships in care
The way I see it, one of the problems at the moment is that we don’t pay enough attention to carers. We see the patient, the service user, the staff, and that’s it. The presence of the carer is often ignored.
The idea is to protect the service user’s welfare. But as we saw at Mid Staffs and Winterbourne View, not listening to carers and families can be a catastrophic and fatal mistake.
We have to learn from that.
The national carers’ strategy sets out how important it is to involve carers when the people they care for are discharged from hospital. They can make it so much easier for people to leave hospital and settle back in at home, because they see them more often than anyone else.
If we recognise carers as partners, the people they care for will be supported better, we can take a more long-term approach to someone’s health and wellbeing and we can make the lives of tens of thousands of carers a lot easier.
The NHS has said it will do just that. It has worked with the National Federation of Nurse Leaders to develop ‘Compassion in Practice’ and said that it will listen to, seek out and act on carer feedback, so their voices are heard as clearly as they should be. But the system must be held to account for what they do, not just strong words. This applies equally to people in care homes - their carers should be consulted just as much as any else’s.
Identifying carers and supplying information
But just opening up that avenue is not enough. It’s not good having the right channels of communication if the right people cannot use it.
It is important to identify carers who might otherwise go unrecognised and unsupported: the husband caring for his dying wife, the daughter looking after her parents or the next-door neighbour who has steadily taken more and more responsibility for one of their friends. If we can spot those people then we can give them better information, better support and a better chance of caring well.
We already have the dementia commissioning for quality and innovation initiative. And we will expand it to include new measures to identify carers and provide them with useful information and advice.
Over the last few years, we have funded the Royal College of GPs and the voluntary sector, including Carers UK and the Carers Trust, to encourage more carers to identify themselves. They have developed face- to- face training and e-learning, and appointed GP carers champions and Carers Ambassadors.
We have built on this by giving over £800,000 to expand the scope of that project and take in new groups, such as community and school nurses.
When carers are identified, they need to get the right information. That lesson comes up time and time again whenever we consult the public.
Councils will have a duty to supply information and advice to carers.
Just last week, we published general care and support information on the NHS Choices website, alongside better information about registered care providers. That will allow people to have their say about the quality of different providers and compare different services, kind of like Trip Advisor. This new transparency and openness will really encourage providers to improve what they do, reach the top of the rankings and attract more interest. This can be enormously powerful, ensuring there is no place for poor care to hide.
Information like that is particularly important given the increasing number of people being cared for in their own home.
To help young carers, we are taking new steps – like the recent announcement that for the first time ever children who are carers will themselves train school nurses in how to support them better.
On top of that, the Department for Education has given over £2.5m to the Children’s Society and the Carers Trust. They will use that money to work with local authorities, voluntary groups and community organisations and design more services with young carers in mind.
That is part of our push to improve integration across all public services. Too many people are falling through the gaps. We will shortly be announcing a major initiative to change the way that integration works – we want to make sure it is the person at the centre, and not the institution.
The care and Support Bill will reinforce integration and prevention as priorities and we will put carers on the same legal footing as the people they care for. We also want to match that by requiring local authorities to meet carers’ eligible needs for support. We are allocating new money that will rise to £175m per year.
Supporting carers to remain in employment
At the moment, too many carers end up giving up work because they feel they can’t juggle work, home and caring. That helps nobody. For carers who actively want to work, we have to give them as much help as possible.
The Department of Health and Employers for Carers have set up a new group to work with employers like BT and Sainsbury’s, as well as voluntary sector organisations like Carers UK to look at how to support carers to stay in their jobs, if that is what they want.
Areas like County Durham are already doing something similar.
They saw that they could do more to support carers to get and keep jobs. So they began to work more closely with the JobCentre manager, who is now part of the operational and strategic groups for carers. They amended the carer registration and support assessment form to ask carers if they need support with employment or training. And they now offer free training to carers to help them not only in their caring role, but also in their career aspirations.
The example from County Durham shows what should be happening everywhere.
There are also examples in the private sector.
Centrica, the company that owns British Gas, has led from the front for flexible working practices for over a decade. They were one of the first employers to set up a carers’ network, and in 2010 they were awarded a triple-whammy of Working Families Top Employers Awards: for carers, for flexible working and for fathers.
The London Fire Brigade is also doing a lot of work on flexible employment policies – you will hear more from them at one of today’s seminars.
This shows that it isn’t just small, family firms that can help employees who are also carers. Every employer, big or small, can do something to help. We need to get the behaviour of the best employers to become mainstream. And I want as many people as possible to benefit from those schemes.
Linked to the issue of jobs is the issue of welfare.
I know that many carers are worried about the welfare reforms. I absolutely understand that, because families often rely on benefits.
The Department of Work and Pensions has said that the Carer’s Allowance will continue to exist as a separate benefit outside the Universal Credit.
It will also continue to be uprated with inflation.
As part of the Welfare Reforms, there will be an extra Carer Element of the Universal Credit to support carers on a low income, who provide care for a severely disabled person.
We will introduce a far more objective assessment with Personal Independence Payments, so those with the greatest needs get the greatest support.
It is true that the introduction of Personal Independence Payments means that some people will no longer get Carer’s Allowance.
But it is crucial to put that in context.
Firstly, people caring for those with the greatest needs will carry on getting the Carer’s Allowance.
And secondly, spending on Carer’s Allowance will carry on going up. Since 2009, expenditure has increased by 5% per year on average, in real terms. It will increase every year up to 2015. At the moment, we spend £1.9bn per year and this will break £2bn by 2015.
I am intensely frustrated when money is pledged, but doesn’t reach those people that need it most. As long as I am in this job, the announcements I make will deliver on the ground.
NHS support for carers
That is backed up by NHS support for carers:
We allocated £400m of new money through the NHS, in particular to help carers take breaks from their caring role.
Last year’s NHS Operating Framework said that local areas should draw up plans to support carers.
Many commissioners have done just that, working excellently with the NHS, local authorities and the voluntary sector.
In places like Northamptonshire and Surrey and Sunderland, there are real examples of CCGs giving career breaks the importance they deserve, leading local schemes that get rave reviews from carers. I know there are people here today from areas where carer breaks are being taken seriously, as I want to thank you for that.
But equally, the same cannot be said for most places. The country is spotted with places where the money simply doesn’t get through.
My position is that that is completely unacceptable.
Carers need breaks and we must make it as easy as possible for them to get a bit of time off.
NHS England and the Department of Health are doing everything possible to change that.
Carers need rights - we must make it easy for them to take We are looking into getting a new question on carer breaks into the GPs survey, and we have put an audit of carers’ experiences in the National Dementia CQUIN. The results of that survey will be reported back to NHS boards so we can be sure that those boards will never be too far removed from people’s real-life experiences of caring.
We are also piloting personal health budgets, and if those pilots go well then we will look into rolling them out across the country, giving more people than ever control over their care.
You will hear more later about some of the issues that are important to carers, including developing social care markets, giving people options and better access to information. There will be workshops where you can discuss those issues in more detail.
But in the meantime I just want to end by saying a massive thank you for all you do to help make the lives of carers better, freer and more manageable. The role of carers is absolutely critical and I am so appreciative of the work you do.