Innovations in End-of-Life Care
an international journal of leaders in end-of-life care
International Perspectives
A National Network of Support for Carers in the United Kingdom:
An Interview with Alison Ryan of the Princess Royal Trust for Carers
The Princess Royal Trust for Carers (PRT) was founded in 1991 by Princess Anne to provide and coordinate comprehensive services to family caregivers, known as "carers" in the United Kingdom. This organization now sponsors a network of 102 carer centers across the country. These centers provide direct services to carers as well as networking with statutory health and social service organizations to meet the needs of carers. Of the roughly six million carers in the UK, the carer centers make a particular effort to reach out to young carers, children and teens under the age of 18 who care for another family member. These young carers are variously estimated to number between 50,0001 to half a million.2
Alison Ryan, the chief executive of this not-for-profit charity and a carer herself, describes the mission and work of the Princess Royal Trust, the challenge of defining and identifying carers, and the 1999 National Strategy for Carers, the new official British policy on carers.3 Ms. Ryan details some of the new activities at PRT that spring from this new national policy, as well as the ongoing challenges of financing and evaluation of services. [Citation: Ryan A. A national network of support for carers in the United Kingdom: An interview with Alison Ryan of the Princess Royal Trust for Carers, by AL Romer, Innovations in End-of-Life Care, 2001;3(2), http://www.edc.org/lastacts].
What is the mission of The Princess Royal Trust for Carers (PRT)?
Our mission is to support carers practically. Initially, the approach was through providing information to the carer; if carers had any kind of problem, they could get information from us. But as we've evolved, we've realized that actually what the carers need, before they get information, is emotional support. Carers need to feel valued for the people they are and the experience that they're having. If a carer comes into a carer center, and says, "I can't stand it any longer," we would say, "We understand that it's a very difficult thing you're doing. We're here for you to provide emotional support." So, first we provide emotional support, then we provide information and other services.
What does it mean when you say that PRT sponsors a carer center?
For us, it means we provide a third of the money for the first three years. We also negotiate with the local health or government authorities located in the area the care center is going to cover, to get the remaining two thirds of the funding for the center. Beyond that, we support the carer centers so that they are able to do their work. We keep them in touch with policy and good practice, and offer training, and consultancy. The Princess Royal Trust provides training and materials to the centers. We facilitate communication across the network so that staff members are always learning and improving good practice. We have published a number of resource booklets and reports.4
Are the carer centers totally independent financially, after the first three years?
They are. They are meant to be independent organizations, which are led by carers but run by professionals. That means that the strategy for each carer center will be determined by a group of voluntary carers. The center is structured to respond to the needs articulated by local carers. The trustee board running the center is designed to be dominated by carers and the centers also have a duty to run carer consultation events and forums. Each center is run, however, by a cadre of paid professionals.
Activities and Staffing of Carer Centers
Can you describe the staffing at a typical carer center? How many staff would there be?
Most centers have about 6-8 paid staff and a lot of volunteers as well. The paid staff are usually social workers or nurses, with about one half working full time and half working part time. Most centers have no fewer than three paid staff members nor more than twelve.
What kinds of things does the paid staff do?
One of the important things staff members do is to make links to the other organizations in their communities. Carers are getting support from many other organizations, such as health services, social services and schools. We have a huge commitment to young carers, children and teens who are providing care for other family members, so that is why we work with schools. Staff will also work with local employers so that local employment practice acknowledges that there will be carers in the workforce.
In addition, staff members provide information on the benefits that the carer is entitled to and ensure that the carer is accessing those benefits. In the United Kingdom, carers are entitled to benefits, and people who are disabled and suffer from long-term illness are entitled to social security benefits. Yet, the uptake is very low. We have found that on average, each carer center brings in one half a million pounds [approx. $717,600] of benefits per year to carers they serve. It's a staggering amount of money and the input to each local economy is enormous.
For the actual carers themselves, staff members provide direct counseling and emotional support. In addition, staff members advocate for individual carers, for example, if a carer is having a problem with a doctor and wants the carer center to take the issue up, they will do that.
The carer center is also responsible for consulting with local carers so that they can inform the development of services in the community. For instance, if the local community wants to close a hospital and replace it with a day service, then it's up to the carer center to make sure the carers have been consulted properly about that change. And the carer center will make carers' voices heard if carers are opposed to the idea.
The carer center also sponsors a range of fun activities. They set up times for hobbies and networks, so people can get together and enjoy some good times. A center might offer sessions on aromatherapy, or reflexology, for example. Young carers get taken out for weekends off so they can socialize. The center sponsors social and physical activities for young carers, such as going skating or playing football. Arranging respite care is an integral part of running all these activities.
Our mission includes attending to the needs of former carers, i.e., those people who stop being carers because the person they were caring for died. Most carer centers will usually keep up contact with former carers for a couple of years.
How do they interact with former carers? The staff at the center will actively seek to help the person on the road to rediscovering his or her identity. They often do help former carers get back into employment or into education. Or if those choices are not appropriate, then they may actually help the person find some other meaningful role. Some former carers become volunteers; some support current carers.
There is a particular role for counseling at this time because if someone's been a carer for a long period of time, he or she probably dropped out of employment, and might well have become socially isolated. Then when the person who was being cared for dies, the carer can lose all focus. Suddenly, the carer has nothing to do with his or her time, and has got no sense of role or identity. That is often when carers really do hit big-time trouble. Some carers may be at risk for suicide after the loved one being cared for dies.
Is employment counseling one of the activities of each carer center?
Yes. We have a national program. We've been working on carer friendly policies and working with major employers, so we can provide lots of advice nationally on that. Our work includes educating employers to the idea that they have carers on their staff already. Often workers who are tired, seem de-motivated and have poor attendance records are carers. Our work is to encourage employers to manage this problem with family friendly policies so that carers can continue to take on both sets of tasks. Such policies include allowing carers flexible hours, or the right to take private phone calls at work. We also provide financial assistance to carers to help them retake vocational training to help them back into employment, if they have had to drop out.
How much continuity is there across centers in terms of what they offer?
They are similar in that they all have to do the key work of emotional support, advocacy, information and providing a voice for carers in their community. How they accomplish these tasks can differ. Most carer centers have a shop front on the high street so people can just drop in. We're very clearly brand-managed, so they see our gold and blue colors and our name, "Princess Royal Trust for Carers," and people off the street can go in.
Most centers are a real drop-in center five days a week and then usually there's a phone answering service. At most centers, someone who phones in crisis will receive a reply within 24 hours. Nearly all the centers also have hotlines.
The shop front space is where the meetings happen and the offices are there. But in rural areas like the north of Scotland, that wouldn't be appropriate because the population is very scattered and the nearest town is often 100 miles of poor roads away. In those settings, the center would have a tiny office with a number of outreach workers who travel to community centers for an afternoon every week, for example. They'll work through other agencies far more. Some of the centers work by getting bigger and bigger and seem to take over all welfare services in their community, and some work primarily through partnerships with other organizations.
In Bristol, which has a large Chinese community, instead of having a Chinese worker, they have trained members of the Bristol Chinese women's group and every week for one afternoon, a Mandarin-speaking Chinese woman will answer the carers' hotline in Bristol. And they advertise this service around the city; "If you speak Mandarin and you want to speak to a Chinese person about your caring, phone Wednesday afternoons." Other centers do similar kinds of outreach with other minority groups. These partnerships are essential.
Identification of Carers
How do you find these carers? How do they know about these services?
Well, that is a really important question. It is not easy because, traditionally, carers have been defined by the number of tasks they do or the number of hours they spend doing it. We find this "task and time spent" approach is not a very helpful way to describe this often invisible population we are aiming to serve.
My approach is that the carer gets identified when the carer has problems. Carers can have problems doing ten minutes of work, if the relationship starts to become distorted. The person wakes up one morning, and she no longer feels like a wife, she feels like a carer. Or the carer might be a child, but that child is now the one who is responsible for and protecting his or her parent, not the other way around.
It seems to me that it is at this point when the stresses and strains of caring get serious. When the relationship, as it was before, can no longer be sustained, the carer may find himself or herself in crisis. Sometimes it happens because the disease a person has is a personality changer, such as with dementia or with multiple sclerosis. I think hours and tasks are important, but it is often not what makes a difference between a carer who is coping and a carer who isn't coping. The breakdown of the caregiving systems seems to be due to this relationship distortion. Change in the basic nature of the relationship is not dependent at all on hours or tasks.
There's quite a lot of general publicity in the UK about carers and that they exist. What we have to do is send out messages saying, "If you find it hard to be a carer, it's not because you're a lousy, inadequate human being. It is because the task of caring for someone nowadays is much more difficult." People are much more ill at home, than they were when long hospital stays were common. In the UK it is judged that people are discharged sicker now than they were ten years ago. People also survive with more serious conditions for longer, leading carers to face more challenging caring tasks at home. The current economic circumstances mean the carer has to juggle the caring with all kinds of other activities, and the nuclear family may be less supportive than in the past. So there is blanket publicity going on all the time in the UK to raise public awareness about the needs of carers.
Networking with GPs and Community Pharmacists
Locally, we are trying to link with all the professionals with whom carers naturally interact, even if they don't identify themselves as carers. That's where our work with primary health care and community pharmacists comes in.
Here in the UK, everyone is registered with their general practitioner (GP). Under the National Strategy for Carers, the British government said that GPs were to identify all the carers on their books, but doctors have found that really hard to do. At the Princess Royal Trust, we've placed a clearly identified member of staff from the carer centers in GP waiting rooms across the UK. These staff would invite people to identify themselves. We did a good bit of publicity about the effort in the surgery and the local press, so patients weren't surprised by this presence. We began this effort in Scotland and are now rolling it out across the rest of the UK. Corporate sponsors in the UK have supported this effort, even though it is, in fact, implementing one of the recommendations of the National Strategy. This self-identification would then lead to referrals to carer services. The GPs were very worried that this activity was going to produce more demands on their time. For this reason, they resisted this intervention, initially.
In fact, identifying previously "invisible" carers has meant that the doctors get better and more appropriate referrals for their services. The carers who have got stress problems arising from their caring responsibilities now go to a carer service and are getting help. So, in fact, making the needs visible hasn't increased physicians' burdens because the carer center staff members are doing the case management to meet these people's needs. In the absence of this carer center effort, that case management burden might have fallen on the primary care health team.
We have also developed a project with community pharmacists. Community pharmacists have been much more interested in working with us. These pharmacists recognize who the carers are because they see them coming constantly into the chemist's shop to get medication or to ask for advice. Many carers do actually get advice from their pharmacists, not from their doctor, because they find the pharmacist more approachable. In the UK, where GPs are free (and grossly overworked), we are all very worried about troubling them "unnecessarily" and so seek help elsewhere if we can. Pharmacists are very anxious to use their considerable expertise and are often easy to chat to while you are waiting for a prescription to be made up.
What do you actually do with the community pharmacists? Tell me a little more about this outreach effort.
We are giving each community pharmacist a resource packet about carers and we're making sure that all their local primary health care teams know about this intervention so that the GP primary care team is ready to pick up anything the center refers to them. Included in this packet are a set of simple one-ply leaflets that offer some descriptions of a range of kinds of carers, where carers can access help, and the common problems encountered by carers. The goal here is to empower carers to seek help, to help them identify themselves, and to make clear how many carers there are and how much of a contribution they are making. If the pharmacists suspect that the customer is a carer, they can pop this leaflet into the same bag, in which they give the medication. That leaflet allows the carer to identify him or herself as a carer.
We are not asking pharmacists to say, "You are a carer, you may need help." That would not be helpful. Instead we harness pharmacists' existing local knowledge and intuitive hunches about their clients, without being intrusive. When pharmacists put the informative leaflet in the bag, they offer the carer the opportunity to identify him or herself as a carer, a first step to accessing services. There is a law in this country that says all medication has to be given in a bag, so logistically, it is a very easy intervention. And we hope to have something printed on the pharmacists' bags sometime later this year.
Can you speak a little more about young carers?
This is an important group of carers under the age of 18 whose needs we are actively attempting to address. I've been working in the United States with Gail Hunt of the National Alliance for Caregiving (NAC) and from what I understand, young carers have not yet been recognized by carer organizations in the States. Gail came over to a young carers conference we had in January 2001. I think the NAC had difficulty trying to find even one project that works with young carers in the US.
How did you come to recognize and consider this group?
It emerged about 7 or 8 years ago. People suddenly realized that there are children who are primary carers. It is a problem that has been hidden because families conspire to hide it, they collude, because they are worried that if the authorities hear that a youngster is looking after mom, who has got multiple sclerosis, and the dad's not around, the child will be taken away. That's a knee-jerk reaction. People say, "That's a terrible situation, we must take the child into care." In fact, all the child wants to do is to be with mom, who loves him and has a good relationship with him. So, both parents and children tend to hide what's going on.
We now know what signs to look out for. We look out for bad behavior in schoolsomeone who was doing well, but now is doing badly. We encourage teachers and administrators to look out for someone who has been bullied, is having problems keeping up, is turning up dirty, is turning up late, or not turning up at all. We encourage the school teachers and administrators to start wondering if there's something going on at home. If there is an illness at home, we'd like them to start thinking about this child in a new way. Perhaps this child doesn't need disciplining. Perhaps this is a child who is trying to juggle an impossible number of responsibilities. In those places where we have a carer center, schools nearly always refer the child to the carer center. Sometimes a child will identify him or herself. We put posters in schools, saying things like, "Do you look after someone? Is this you? Call the Carer Center."
How have the schools reacted to this?
Many school people can't believe it's happening, until they actually identify a young carer in their midst. If we approach them carefully and in a reasoned way, then we find they are responsive. It rings a bell and we hope that our approach allows them to see what is happening. For many school people, it is really the first time they have thought about children in this role. Schools can do an awful lot to support young carers even in the absence of a carer center.
If the caregiving burden is not recognized, children who are carers can get into terrible trouble. These children can lose out on education, and particularly on social skills. They don't tend to play with other kids because they are always hurrying home. They can't have someone for tea, and they're not wearing fashionable clothes. They might get abused on the playground, the other kids saying, "Oh, your mommy's in a wheelchair." Kids are not always kind. So, these children who are caring for other family members can become very isolated. Missing out on childhood and adolescence can lead to suffering and difficulties in becoming responsible, well-adjusted adults.
Was the PRT the first group to address this issue?
No. An organization called Carers National Association,5 Association, which is a lobbying group and the carers' membership organization, was the first to pick it up. We work with them in a sisterly kind of way. They appointed a research worker to investigate how big the problem was. They thought initially there might be 10,000 young carers; about 4 or 5 years ago, then it was thought that there were 50,000 young carers; and we now think there are probably more like half a million young carers in the UK.
How did they come up with those numbers?
Going through census reports, social service reports and the local authority records.
Let's take an example—what happens if a teen who is taking care of his dad has a problem and calls the carer center on a Saturday afternoon? Would that teen get a real person or a recording?
A child who is already known to the center will have someone available to them 24 hours a day, someone whom the child trusts and knows. If it's a new child, we pick it up almost as quickly, actually. On weekends the call is usually taken by an answering machine phone. But the answering machine gets monitored, so a person will get back to the caller pretty fast. The staff member would find out what the problem was, and if medical intervention were needed, would help the child get that care.
What's the process when a young carer contacts a center? How do you connect with them and what kinds of resources does the center make available to that young person?
Referrals for children and adults are much the same and there is no set pattern. People self refer or are sent on by friends or professionals. If it is a child, however, the young carers specialist will pick up the referral. The first step of any referral is always the same: a welcome, and then an assessment of the carer's perceived needs. The center will match the young carer with a worker whom the center knows and trusts. The young carer will have personal contact numbers for that person and so will know how to get hold of that contact person if he or she needs to. This contact person must be an adult who is extremely well-equipped to deal with whatever the problem is. Normally with the young carer, it is a professional, a social worker, or someone trained and vetted to work with young people. Volunteers who work with children have to be police-checked to make sure they've not been lawfully registered as child abusers and they must be trained very carefully. But on the whole, for control reasons, you would normally choose someone on the staff to be the contact person for a young carer.
Working with vulnerable people is something you have to do very carefully. There are a lot of issues about child protection that we had to be extremely careful about. It is the law, but it also has to do with quality standards. When providing direct care to vulnerable people, services are not meant to be employing persons who are not specially trained and able to respond appropriately.
What is the role of volunteers for the PRT?
There is some variety in what volunteers choose to do. Often former carers run some of the hobby groups. If a former carer is a talented artist and some of the carers want to get together and paint pictures, then that volunteer might run such a group. Another popular activity is to provide transport to carers who get stuck. Carers also just help doing all types of office work: emails, bulletins, newsletters, or whatever needs doing.
Financing
Financially, how are all of these services paid for?
Financially it's a total nightmare, or rather a challenge! The centers do provide a great many services. Centrally, we raise one and a half million pounds a year. We have restrictions on what kinds of fundraising we are allowed to do, because we are a "Royal Trust." The good thing about being a Royal Trust is that many people quite like meeting princesses, so they are willing to come to fund raising events where they can do so.
How do you raise that money to support these centers?
The money for the central work we do, which is basically the training and consultancy and providing our third of the start up funding for the centers, comes on the whole from big companies and wealthy individuals, and it comes through the influence we can raise, simply because we are very well connected. The entire establishment in the UK is our board or we know them or can get to them. So, we are privileged in that way and we use that privilege all the time.
The carer centers don't have the kind of clout. However, they now seem to be occupying such a core part of the provision of social services and health service in their communities that they are funded largely from local statutory funding. Perhaps now is the time to talk about the political context and the new National Strategy for Carers.
The National Strategy for Carers
The National Strategy for Carers became the national policy on carers not because the Labor government is full of kind people, even though they'd like you to think so, but because it made financial sense. I have to say that Tony Blair, the Prime Minister, was a young carer. His mother had a stroke and his father had a bit of a nervous breakdown when he was a teenager. Tony did most of the caring for a time, so he has some sympathy for this plight.
However, it was the research on the actual monetary contribution carers are making to the welfare economy that spawned this new policy. Now, as you know, in the United Kingdom health and social services are largely provided free of charge and we don't have health insurance. On average, a carer in the UK cares for someone for five years clearly, some people provide care for many more years than that average, some people for fewer. A recent report estimated that the six million carers providing these 5 years of voluntary care save the government £34 billion per annum.6 If the government could increase the duration of this voluntary caregiving by 10 percent, i.e., to 5.5 years, it could save an additional 10 percent on the replacement costs of the carer or an additional £3.4 billion per year. (Carol Levine and her colleagues have calculated what the comparable "savings" generated by voluntary caregiving in the US.7)
These statistics had an impact on the British government. If these people were put off being carers, then paying for what is now "free" care, from the government's point of view, would be a phenomenal drain on national resources.
There are additional costs that can emerge from this kind of caring. Carers can become patients themselves because of the problems of being a carer. Another risk of becoming a carer is that as these people drop out of the paid work economy, then they are no longer accruing retirement pensions. Without a pension, they run the risk of becoming a burden to the state in later life.
In 1999, the government took a proactive approach and designed a holistic National Strategy for Carers. Within this new national policy are some obligations that were then translated into law in various pieces of legislation. The strategy looks at the kind of information, training and consultation carers need. But more importantly, it addresses key underlying issues: How can the community work to keep carers in school? What allows carers to remain employed? How can we as a society keep carers connected to their communities and so avoid social isolation? Carers need support to remain whole people. And it is to everyone's advantage that carers retain access to their whole world. The National Strategy for Carers is a powerful document that advocates strongly for the rights and needs of carers. However, the impetus for this policy came from the financial and economic statistics on what these people save for the nation. Investing in carers benefits us all.
The National Strategy for Carers works through the agency of the National Health Service (NHS) and the local government. The strategy lays a requirement on both the NHS and the local government to do certain things for carers and if they don't do those things, they don't get central government money. There is also real money behind this strategy. The first thing that was centrally funded was a project for carers to get short-term breaks.8 This new policy also inspired the creation of new Quality Standards for Local Carer Support Services.9
The King's Fund, another independent health care charity in the UK, set up a working group to establish The Quality Standards for Local Carer Support Services in response to recommendations laid out in the National Strategy for Carers. The working group included a representative from the Princess Royal Trust, as well as someone from the Carers National Association, and representatives from the NHS, the Department of Health, and other government and charity organizations involved in this field.
Poor quality services have been a real problem for carers, so these new standards should help support carers in very concrete ways. We are now working on how to implement these standards.
Are there other pieces coming out of this new national strategy?
The work we are doing with primary care GPs, to identify hidden carers, which I mentioned earlier, is very much part of the National Strategy for Carers.
Another major national effort is that the 2001 census of the population is going to have a question in it about carers. As a result we will be able to quantify the numbers of carers a bit more accurately, as well as their distribution by region.
Building Partnerships to Achieve Mission
Can you say more about partnerships you've built with other organizations to achieve your goal of providing comprehensive care to carers in the UK?
Currently, the Princess Royal Trust for Carers reaches about 100,000 carers in the UK. We want to get to a million. We cannot expand our network ten-fold, it is just financially impossible. So, the way we hope to get support to the million carers is by forming strategic alliances with people who may already be working with carers, but may not recognize those individuals as carers. We would like to share the kind of carer insights that we have gained through our carer center network with these other individuals and organizations.
The usual trajectory of a carer seeking help is that the carer does not go first to a carers service. I know this from my own experience caring for my husband and my mother-in-law. Carers go first to the organization that deals with the disease afflicting their loved one. So. in my case, I used to go to the Hemophilia Society and the Liver Trust. These disease-specific organizations can be wonderful. They provide fantastic information, but often they are not "carer-alert." What I mean is that they are not oriented to the experience of being a carer. They don't know the added little bits that I would need as a carer. They offer the technical information necessary to do the caring. We believe that we can help these organizations become more "carer aware" and provide more carer-focused support. In that way, they would increase the effectiveness of their information.
If we at the Princess Royal Trust can form alliances with the people the carers actually go to for information, especially in the first days of caring, then I think we can start making a difference in the lives of more carers without actually having to expand our own network. So, we will make an alliance with anyone we can. We have made a very strong alliance with Crossroads,10 which provides short-term breaks and respite care. In fact, we're getting together with Crossroads to train our staff jointly. We have a very good alliance with the Carers National Association and with a lot of other national organizations. Locally, our carer centers will make strong links with whomever is available in their own community.
Evaluation
How do you evaluate the work that the carer centers do?
We are working on that at the moment. We are trying to make sure that the carer's experience of the work is at the core, because we believe that the carer's experience is the prime determinant of success or failure. We are working on all kinds of feedback. Virtually every carer center has developed its own system of getting feedback. Now we're trying to work out which system represents best practice. It is very lively work, right at the moment.
What is the range of ways that centers are currently getting at carers' experience of the care the centers provide?
Some centers re-contact carers who have not accessed the service for six months, with the goal of finding out what's going on, and whether the service met their needs. Staff members from the center inquire by phone or send a questionnaire to these carers.
One of the problems in eliciting feedback is that carers tend to be so grateful that anybody did anything for them, that they tend to be a bit uncritical. So it is very hard to get real feedback and actually determine what's being done really well and what's being done less well.
In some areas, we will have consultation days. We'll bring in 14 or 15 carers to participate in a focus group. We ask them to explore the issues that they are facing and then we inquire how the carer center is addressing those issues. The goal is not just to find out what the carer center is up to, but also to learn how the local services provided by statutory bodies are working. Getting these focus groups together is terribly hard because in order to get a group of carers together, we always have to provide respite care for each person being cared for.
Another mechanism we're using to develop good practice is to use action learning sets. We bring together more highly trained specialist workers like young carers' workers or center managers, to look at the common problems they face. Based on their cumulative experience and knowledge, they develop a standard of good practice.
An additional challenge we face is to understand why hidden carers are staying hidden. One might consider their not accessing the center as evidence that the center is doing something wrong, or that the center is missing something. So, I wouldn't say that we've got that one right, but we're working on it.
Do you conduct any kind of anonymous surveys of carers?
We haven't conducted a national survey. I think we're quite likely to be developing our website and we may get some of that kind of information from Web users. All the carer centers are on the Web, and one benefit they offer carers who don't have Internet access in their own homes, is access from the center.
Have you learned anything about carers' experience and quality of services from the carers' chat and discussion on the PRT site?
Yes, that is quite interesting. The chat and discussion venues are developing quite slowly. The discussion hasn't taken off yet, but we think it will.
The other thing we've learned comes directly out of my experience as a carer. I have extensive experience speaking to carer groups, as a carer. When I speak publicly and am willing to say that I've always found caring pretty difficult, that honesty helps provide an atmosphere in which people are less afraid to talk about their real problems. This makes a real difference, especially with men, who are perpetually weeping on my shoulder. That's no good, because I just weep back.
The whole question about quality and evaluation is huge in the not-for-profit sector in the UK. We use a number of models, which are broadly used in the not-for-profit sector. Our problem is that they tend to be process-oriented and geared to assessing the organizations' activities. We can tick off all the boxes and have all the meetings. But these measures do not assure that we are hearing real carers' voices about their own experience. Accessing their experience is not in the model. And yet, that's what you have to do.
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References
1. Young carers research group. Young carers in the UK. Loughborough University, 1998.[Return to International Perspectives]
2. Pettitt G, Kenny D. Carers Count: A Research Report on Carers in London. London: The Princess Royal Trust for Carers, 2000.[Return to International Perspectives]
3. Caring about Carers: A National Strategy for Carers. HM Government, published February, 1999. Available at http://www.carers.gov.uk in PDF format.[Return to International Perspectives]
4. See Read More page of this issue, first section.[Return to International Perspectives]
5. See Resources and Tools page for more information on the Carers National Association.[Return to International Perspectives]
6. Warner L, Wexler S. Eight Hours a Day and Taken for Granted? London: The Princess Royal Trust for Carers, 1998:2, citing General Household Survey (GHS) 1995.[Return to International Perspectives]
7. Carol Levine offered a "midrange national economic value of informal caregiving" estimate of $196 billion dollars in 1997: Levine C. Always on Call. New York: United Hospital Fund, 2000:5. citing Arno PS, Levine C, Memmott MM. The economic value of informal caregiving. Health Affairs. 1999;18(2):182-188.[Return to International Perspectives]
8. See the King's Fund on the Resources and Tools page and click on the link to their Health and Social Care Support page for an analysis of local authority plans and progress reports on the use of the Carers Special Grant (Year 2) written by Penny Banks and Emilie Roberts.[Return to International Perspectives]
9. See Resources and Tools page: Carers: Government Information for Carers website for link to these standards.[Return to International Perspectives]
10. See Resources and Tools page: Crossroads-Caring for Carers.[Return to International Perspectives]
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