It is inevitable that the situations of unpaid carers will be very similar in some ways and very different in others. Some groups of carers, such as BME, elderly and young carers, have particular needs and experiences, but also share experiences with other carers in relation to general levels of support and the quality of service provision. The following sections discuss unpaid carers' experiences of services and support in general, but also outline the needs of particular groups of carers in more detail when the responses were significant enough to make generalised conclusions. Specific issues in relation to BME carers are discussed in some depth as a priority area for the Scottish Executive.
The experiences of carers are discussed under the following themes, in line with the topic guide:
- Type of care experience
- Co-ordination of care services
- Specific issues in relation to BME carers
- Provision of information
- Effectiveness of policies to support carers
- Employer-based support for carers
- Carers' health: psychological and emotional support
- Contact with social workers
- Priorities for carers over the next 10 years.
3.2 Type of care experiences
The carers we spoke to had many different experiences of caring. Most cared for one or more immediate family members - such as partners or siblings - and some for other family members and friends. Some were sole carers, whilst others shared the task with a spouse or partner or other family members. Caring tasks included washing, dressing, feeding, lifting and assistance with medication, as well as general household chores, running the household, assistance with paperwork and shopping, emotional support and support for other family members. Some carers spent almost all their time caring and others had additional responsibilities, working part-time or full-time. Some carers cared for someone living in their house, whilst others travelled to take care of family members and/or friends. Respondents emphasised that caring was time-intensive and exhausting, and in many cases an isolating experience. Some had cared for a long time, whilst others had only recently set out on the journey of caring. For some, caring will be temporary, whilst for others it will be an inescapable reality for the foreseeable future.
The situations of carers are very different according to the circumstances of the people they care for. We spoke to carers who cared for people with multiple sclerosis, cerebral palsy, dementia, Alzheimer's, strokes, blindness, deafness, autism, mental health issues, severe mental and physical disability, multiple progressing illnesses, alcoholism, allergies, diabetes, serious accidents, and even those who have difficulty getting a diagnosis. In many cases, carers themselves suffered from poor health, and some referred to feelings of stress and depression.
The situations of carers also varied according to their age. Younger carers faced particular issues in terms of their own lack of social development, motivation and confidence. Many were uncertain about the future. Elderly carers had particular concerns about suitable housing and financial support.
Differences in experiences have a particular impact on how supported carers feel and their particular needs for the future. The experiences of carers could be approached from many angles. Whilst there are undoubtedly specific issues in relation to carers of specific ages, backgrounds and in particular caring circumstances, these issues are too detailed to account in a report of this nature.
It is evident, however, that those who care have little choice but to provide unpaid care for those they love, and simultaneously want to do as much as they can, at times to the detriment of their own health and safety. Some feel supported in their situations and others feel less so. From our conversations, it is clear that carers go through a journey in their experience of caring. For some, assuming a caring role has been sudden, whilst others have had more time to get accustomed to a situation where a condition progressed over time. Initially, carers are overwhelmed by their situation, and most in need of support, information and advice. As their situation 'matures', their support needs remain, but change, with most carers feeling more satisfied with the levels of support and services they receive:
'At the outset it was a real horror story. I did not know what was happening. There was no one to tell me what was happening. There was no one-stop shop. Everything came in bits and pieces. I am an engineer, a practical guy, but I needed a lot of practical help.' (Elderly man caring for his wife, suffering from Alzheimer's)
3.3 Co-ordination of care services
The carers we spoke to found themselves at different points along their caring journey, and therefore their experiences of the co-ordination of care services varied widely.
Some carers had contact only with a limited number of services and therefore had little experiences of the way care services were co-ordinated. Many elderly carers had contact only with a GP. In some cases, the GP acted as the channel to wider support for the carer, but this was not always the case. Elderly carers often perceived themselves as being burdensome if they asked for help from a social worker and/or other voluntary organisations. Many elderly carers also cared for elderly people who were suspicious of the help offered by social workers and others.
Caring, amongst elderly carers, was very much perceived as a duty; therefore, this group tended to rely less on services:
'I don't complain about it. It is what I promised to do 62 years ago when we got married. She's been caring for the children and me for over 60 years.' (Elderly carer caring for his wife suffering from dementia, Edinburgh)
'My wife is very resourceful. She is very independent. How she copes I do not know, but she does. She doesn't complain. No way would she complain. She is not unhappy doing it.' (Elderly man describing his elderly wife caring for a sister with dementia in a very demanding situation, Fife)
'I think people are penalised if they worked. I was brought up to be independent. We cared for ourselves. I never begrudged at any time looking after my mother. We took it as part of our life. I did not expect any rewards. It was only when I came to Nairn that I discovered a carers group. I said I am not a carer, I'm a wife! I am doing what is expected of me.' (Elderly carer, Nairn)
In general, many carers' first point of contact was with their GP. Most carers recognised that GPs play an important role in accessing a wider range of services. Whilst some were very satisfied with the support they received through their GP, others complained that not enough was being done by GPs to ensure that carers accessed a wider range of support services, such as a social worker, or even a counsellor, early in the caring process.
Carers who cared for people with mental health problems expressed some dissatisfaction with GPs and psychiatric nurses. The level of support was generally perceived as less than satisfactory, and carers often had to struggle to access wider support. GPs and psychiatric nurses were reported to fail in:
- recognising the seriousness of conditions;
- being empathetic towards the carer and the cared-for person;
- exploring different methods of treatment, with undue emphasis on taking medication; and
- sharing information, because of patient confidentiality.
Carers in these circumstances reported feeling powerless. These issues were also particularly prevalent amongst carers who themselves had mental health issues:
'My GP [whom is shared with her mother] is useless - he is very young and inexperienced and refused to get help for my mother and I don't think he realised the extent of her illness, and neither did my mother. Every time I tried to ask about her, it was like talking to a brick wall - he would just keep repeating that he couldn't disclose anything as it was confidential information.' (Carer with mental health problems, Glasgow)
'I'm the carer yet I have no decision making power.' (Carer with mental health problems, Glasgow)
'Going to the GP was a complete waste of time - even when (his wife) had a CPN I was never allowed any information because of the confidentiality issues - her life was seen as none of my business…. ' (Carer with mental health problems, Glasgow) 'At one point my mum was down to 5 stone, but the GP didn't seem to think it was that problematic and neither did my mum - every time I tried to get her a referral, I felt like no one was listening to me.' (Carer with mental health problems, Glasgow)
Other carers, in particular those in need of specific equipment and alterations to their housing, had many concerns with the way services were co-ordinated. They were shocked at the lack of co-ordination between, for example, occupational therapists and the service providers doing the alterations to houses and/or delivering equipment. We heard many stories of alterations made that were inappropriate and based on a complete lack of understanding of the needs of the disabled person, and therefore a waste of money, or equipment such as hoists that were not suitable for the size of the particular house or room. Furthermore, alternative housing suggested by housing departments was, on many occasions, unsuitable, even after an occupational therapist from the same local authority visited the family.
Many carers were concerned about the changeover in support and services when they moved from caring for a child to caring for an adult. Support for children was perceived as better than that for adults. Finding appropriate services and support was a very demanding process for carers, and often required a lot of mental energy:
'So far our story is good. At the moment services seem quite open towards children, but what happens to my boy when he is an adult?' (Woman caring for a disabled child, Dingwall)
'It is not easy. There are just not services out there for people like my son - even now. Younger parents have said how do you manage to get all of this for your son and I have said you have to keep on and on. I used to hate calling people and writing to people but eventually that is the only way.' (Woman caring for son with autism, Inverness)
There was a lack of co-ordination between services and support for the cared for and the carer. Many carers emphasised that it was essential to consider the whole family in a caring situation, and not only the person requiring the care:
'You can't disassociate the person you care for from the carer.' (Man caring for a partner with MS, Dingwall)
'Look at families. See how you can help the whole family. See how you can help to make the family normal again.' (Woman caring for her daughter who is severely mentally and physically disabled, Fife)
'My son's social worker is for him. There is nobody for me. It would be much better if the social worker took on the whole family.' (Mother of six children, including a son with autism, Easter Ross)
A number of participants caring for people who had both caring and nursing needs emphasised the lack of co-ordination in budgets between the health service and social services. Often carers cannot find the right type of respite care or day care, because of lack of nursing provision:
'There are fewer barriers on the health side of things than on the social work side. There is always a struggle of whose budget. Why can't they work closely together?' (Carer of woman with Alzheimer's, Fife)
Voluntary support organisations played an important role in co-ordinating services. Many carers were assisted by carer organisations that played an important advocacy role on their behalf. This was particularly the case amongst carers suffering with mental health problems and learning difficulties, many of whom had difficulty articulating their needs. For example, we spoke to one deaf carer who had difficulty impressing upon her support team how serious her partner's drink problem was, and therefore felt unsupported in dealing with the rough and smooth of his mood swings and financial demands.
Most carers expressed the need for a particular individual to manage their whole situation, and co-ordinate all the service providers involved. Some saw this as the role of the GP; others thought it suited social workers better. This care co-ordinator could potentially play a key role in providing information about the suitability of services on offer, as well as being accountable for how carers were progressing and coping in their caring role.
3.4 Specific issues affecting black and minority ethnic carers
The issues set out elsewhere in this report also have salience within BME communities. The study did, however, identify a number of issues that were very specific to BME carers, and so for this group these are detailed below under the following headings, after a summary:
- Type of care experience
- Communication barriers to accessing care support services and information
- Institutional and cultural barriers to accessing care support services
- The need for future service provision to be tailored to the needs of BME carers.
Summary of specific issues in relation to BME carers
- In common with all carers in the study, BME participants had a variety of care experiences, involving washing, dressing, feeding and assistance with medication, as well as general household chores and running households.
- Caring responsibilities tended to cluster around conditions resulting from chronic heart disease and angina, as well as hypertension and diabetes, which confirms evidence from other UK studies about the higher propensity of people of African, African Caribbean and Asian origin to contract these conditions.
- A recurring theme within all the focus groups with BME carers, particularly among older carers, was the language, cultural, and institutional barriers that prevent or inhibit BME carers from accessing support services, either for themselves or for the person they are caring for.
- Care was seen as the responsibility of the family, making it difficult for BME carers to accept respite care.
- Conditions such as mental illness and dementia were seen as unmentionable in BME communities, and as something to be kept within the confines of the family, making it difficult to ask for outside help.
- From the perspective of some BME carers, the pressure on them to provide support was also related to expectations, stereotypes and myths on the part of the providers of statutory support services, particularly when they were dealing with Asian families.
- The younger participants, particularly within the Asian community, pointed to a shift in cultural expectations about care and the family, away from depending largely upon the family for care, towards increasingly having to accept care from statutory and voluntary providers.
- Eurocentric models of assessing care needs could act as a barrier to services within communities that are open to receiving them.
- Access to psychological support for BME carers was limited by lack of provision, and by negative cultural perceptions of stress and depression.
- Mainstream services were seen as needing to change fundamentally in the future, by acknowledging the existence of BME communities much more in the way they plan, promote and deliver their services.
Type of care experience
As with other groups in the study, BME carers had a variety of care experiences, involving washing, dressing, feeding and assistance with medication, as well as general household chores and running households. However, among Asian participants, there was some clustering of caring responsibilities around conditions resulting from chronic heart disease and angina, as well as hypertension and diabetes, which are also known risk factors for stroke. Indeed, the pattern in this study confirms evidence from other UK studies about the higher propensity of people of Asian origin to these conditions (see for example, Webster, 1997; Alexander, 1999; Puri, 2003) 2. This has obvious implications for access to culturally sensitive services.
The experiences of the following two participants typify the care experiences among Asian people who participated in the study:
'My mother-in-law has diabetes, she has angina, she's got blood pressure and she is on about 29 tablets a day. So, we have this medication box. She is not able to go to the toilet so we have a commode in her bedroom so that when she comes round we have to empty that. We get up at 6 o'clock in the morning, give her a cup of tea and give her some medication and then at 9 o'clock we have to give her something more solid to eat and make sure she has her medication. She can only walk with a walking frame so then you have to assist her to go to the toilet and then bring her back and get her changed and everything and encourage her to do her exercises because of her knee replacement.' (Woman sharing the caring for mother-in-law with other family members, Glasgow)
' My mother has diabetes. She doesn't really understand the cycle behind it to say that OK, what's going to happen to the food when it goes into the system and every time you eat something sweet or you eat something salty…I have to remind her sort of constantly, OK, this is what it's gonna do like, this is the amount of sugar it's got in it.' (Woman caring for her mother, Edinburgh)
One of the recurring themes within all of the focus groups with BME carers, particularly among older carers, was the issue of language, and the way in which this prevented or inhibited some of them from accessing support services. The impact of this was felt acutely, in a number of ways. First, carers found it difficult or impossible to locate and understand information about available services; secondly, the person receiving the service might not be able to benefit because of language barriers; and thirdly, carers worried about the potential effect of receiving services on the person being cared for. A Chinese participant who shared the care of his son with cerebral palsy son jointly with his wife explained that, as someone who was effectively westernised and proficient in English, he was able to access services as needed, or was at least able to ask relevant questions. However, he articulated a view expressed by other BME participants about communities of carers being effectively denied services because the language of delivery was English. As he explained:
'They are not joining those groups because they can't speak English. Since they do not speak English, they do not know that there is a group there and even workers working with them who introduce these groups, they are very reluctant to join because if they were there, they can't communicate with other parents so there is no point them being there.' (Man caring for son with cerebral palsy, Edinburgh)
Similarly, an Asian participant who had been caring for her father-in-law described her reluctance to access support services that were made available to her, because of her concerns about the language barrier between those who provided the service and her father-in-law. She put it in this way:
'One of my friends, she keep saying you can get this one, you can get this one but I was so scared. I thought well, it's my father in law who didn't speak any English at all so no point to leave anybody with him. I was too scared because he can't speak the English. He might think, "Oh my God, she left me" so I have to stick with him all the time.' (Woman formerly caring for her father in law, Edinburgh)
As well as difficulties in accessing and taking up services, some participants described negative experiences resulting from services that were predicated on a Eurocentric model of delivery. As the services were not the correct 'fit',BME carers often had to take the initiative to supplement them in order to make them more responsive. The experience of a Chinese carer whose elderly mother was in residential care exemplifies this:
'I think most of all it is the language that is the barrier and the difficulties with the nurse and things but I find in the last stages, you know…I care about my mother over ten years. I look after her at home. I have to do everything for her, bath, cooking, everything. But in the last stage, I take her to the nursing home because I really can't take care of her. But the time she stay in the nursing home, it is very difficult. I have to be there anytime, 24 hours because the nurse don't know what she talking about and she don't understand. So, I end up with a telephone next to her bed because you have to support yourself, they don't support you.' (Chinese woman who formerly cared for her elderly mother, Edinburgh )
Language support was a significant issue; however, some participants, particularly the younger ones, felt that over a longer time period existing barriers resulting from a lack of language provision might become less of an issue, as the needs of the second and third generation came into play, particularly with curtailments on immigration. However, the need to plan for appropriate services, which recognise the culture and faith of BME communities, was seen as an issue that would be important throughout successive generations.
Institutional and cultural barriers
The study identified a number of institutional and cultural barriers that prevented BME carers either from accessing support services or from being satisfied with the services that were being provided.
Access to support services
Whilst participants in the overall study welcomed the provision of respite care, the majority of BME participants felt that caring was the responsibility of the family. As such, sending a relative away for an extended period to provide the carer with a break was completely taboo, as it went against cultural and family expectations. Moreover, BME participants pointed out that that taking advantage of respite care would be humiliating for the carer and for their families, since it would give the impression to the wider community that they were unable to cope. The study also revealed that conditions such as mental illness and dementia were seen as unmentionable in BME communities, and as something to be kept within the confines of the family. This made it difficult to ask for outside help.
'It's like sending the dog to the kennel for a week or so.' (Woman formerly caring for her father-in-law, Edinburgh)
'I think that sometimes ethnic minority people may be ashamed to ask for help for them to look after the family members and they think that it is not right for them to ask for outside help. They don't know how to do it or they think people will think they can't manage.' (Woman caring for her father-in-law, Glasgow)
'It's a big thing in the ethnic minority you know that you have to look after your own family and that if you don't it's like degrading" (Woman caring for her mother, Glasgow)
Some BME carers, however, also felt pressures upon them to provide care due to expectations, stereotypes and myths on the part of the providers of statutory support services, particularly when dealing with Asian families. Indeed, Asian families were seen to be part of an extensive family network and there was therefore an underlying assumption that they should or could provide all of the necessary support to the person they were caring for. An Asian participant who cared for her husband's grandmother recounted her experiences:
'… she needed 24 hour care and somebody to watch over her during the night and when we applied for it, it took them 5 weeks to put into place and on the sixth week she was dead. They didn't have a clue. It was terrible, terrible….They should have been able to understand. They just looked at the extended family and thought, 'there are all these people here'. The assessment was all wrong.' (Woman caring for her mother-in law, Glasgow)
Shifting cultural expectations
The younger participants within the Asian community did, however, point out that expectations were shifting, albeit slowly, and that using support services was seen by the younger generation as less of a stigma, and as more of a right.
'My Mum would say, "my God, what the hell is wrong with you. You can't look after me." Our generation though they say "OK, something's available, why not use it?" Because that's the reason why they've been set up out there because there's a need for these things, but the thing is for the older generation, approaching it sends different signals for them.' (Young woman caring for her mother with disabilities, Edinburgh)
Eurocentric models of care
Participants who were more open to the notion of respite care or other support services for carers were concerned that they were predicated on a white European model of a person's care needs, which made them inappropriate. The two following examples illustrate how the provision of services or formalised assessments of personal care needs can act as a barrier to services:
' If they want to pray, they want to be able to do their ablutions properly, you know, because even though some of them might not be able to kneel and pray, they can still sit on the chair and do it and they would want to keep up with that. Also we would be worried about their culture and their food and whether it's Halal so you have to take everything into account.' (Woman caring for father, Glasgow)
'In Western culture, a person either takes a bath or takes a shower and so the model of assessment is based on that. However, in the Chinese community, elderly people do not take a bath or a shower, but climb into the bath tub and make use of a bucket of water and splash themselves and of course, the Occupational Therapist cannot fit this into their set of rules.' ( MECOPP Focus Group Interpreter, Edinburgh)
Access to psychological support for carers
The majority of participants in the BME focus groups were the sole providers of care, and they were mostly women. However, a limited number of participants did share the responsibility for the personal care of a relative with another family member. Most participants described the stress and depression resulting from the demands of caring, as well as the loneliness and isolation. Despite the myths participants identified on the part of statutory providers about support networks within Asian extended families, a significant number did not have an extended family to fall back on. Family members either did not live close by, or more often, were pursuing their own lives. The impact of having to take prime responsibility for caring therefore took its toll, as the following example illustrates vividly:
'I find at times a person can get down, and we get down as well but we've got to, just stomp ahead get on with it, you know, with the caring and everything else and sometimes, you want that time away just to relax or even just to talk to someone about what you're going through because you could have issues as well and you do get depressed and lonely at times when you don't have any other outside help and it's just you on your own. It's nice if you've got extended family and everybody chips in and helps but when you are on your own and you are looking after that person solely you do get exhausted if you are doing the same thing day in day out.' (Woman caring for her father, Glasgow)
It was in these circumstances that participants identified the need for psychological support. However, as well as being afraid to ask for help, carers felt that within the Asian community there was a stigma attached to needing psychological support. In any event, participants were unaware of what was available or where to go for help. Fears about accessing psychological support services and the associated stigma were directly linked to cultural expectations about the family as the provider of care services, and the way in which being seen as unable to cope would impact adversely on the good name of their families. A persistent theme among participants also related to concerns that outside agencies might not treat their issues as confidential, particularly where the service was provided by another Asian, and that approaches for help would get back to the person being cared for and to the wider community. The views of the following three participants illustrate this:
'I think again that it is a cultural restraint. I mean if I knew there was another Asian, call me paranoid or what. For example if I went to someone and confided and said "Oh I'm a bit tired" or whatever that person, I assume would automatically assume that she can't be bothered looking after her mother anymore and that would be a black mark against your name or your family name and that is part of the stress as well because you cannot offload onto anyone, especially of course with them being Asian. You've always got this constant fear in your head about what they are going to think… If they were there and if I knew they would be definitely confidential and they had that cultural respect then maybe I would not be so paranoid, but because they don't provide it in the first place and having a bad experience with social services, I don't think they respect carers enough.' (Woman caring for mother, Glasgow)
'I mean I suffered from severe depression and that and I found that in the Asian community, you are just supposed to get on with it. Even if you have a mental illness you are supposed to just get on with it. You feel embarrassed and worry about anybody knowing about it as well because you thought people from the Asian community if they found out about it, what would they think.' (Woman caring for father, Glasgow)
'I think if they know they could come in confidence and ask, and first letting them know that there is help available. Like in the sense that if that person needs help but he doesn't want the other family members to know I need a wee bit of help or I need someone to listen to me and he doesn't want anybody else to know that he's not coping so well, you know and he needs time out. Knowing he can go in confidence and talk to someone and nobody has to know about it.' (Woman caring for father, Glasgow)
Future service provision
The changing role of women, particularly in the Asian community, as a result of them becoming more educated and focused on a career rather than early marriage, will have an adverse impact on the availability of care within the family. Thus participants saw the community as being in a process of transformation, from depending largely on the family for care services to increasingly having to accept care from outside agencies. Moreover, patterns of change among the younger generation more generally are leading to the possibility of families becoming more fragmented, resulting in an even more limited pool of carers. As one participant explained:
'They (the younger generation) want to pick and choose. So, if it suits them, they will choose to keep it. If something's not working, they'll say 'Oh, I can't do it' automatically, and just walk away from it.' (Younger woman caring for a mother with diabetes, Edinburgh)
BME carers saw mainstream services as needing to change fundamentally in the future, by acknowledging the existence of BME communities not only in the way that they delivered their services, but in how they planned and promoted them. In practical terms, this might translate in providing more secure funding for the voluntary sector to assist BME communities in accessing care services, and in providing more bilingual workers to run statutory and voluntary services, thus making dialogue with families easier. Participants emphasised the need for mainstream provision that takes full account of BME communities, ensuring that they receive a more effective service, rather than separate provision tacked onto mainstream services as an afterthought. One participant explained it in this way:
'…mainstream and keeping it all equal but acknowledging I guess the ethnic minority a bit more and to know that they are hesitant and they are probably a bit embarrassed to approach them.' (Woman caring for her mother, Glasgow)
Participants were concerned that, if services did not change in the future, their prospects would be bleak, and their caring role relentless:
'My mother in law is going to be older. She is going to need more care and if there are no services in place then we are going to end up being ground to the ground by having to be there 24 hours caring.' (Woman caring for her mother-in-law, Glasgow) 'Hard to say, if like I've got help, and like I say, if help is available and there is help for me then fine. If not, it does look bleak then I would say because it's pretty hard. It's not easy looking after someone, you know. I wouldn't, you know, put her in a home. I would look after her if I could for as long as I could.' (Woman caring for mother, Glasgow)
The respondents saw language barriers as something that might change through the generations. Nevertheless, they emphasised the continued need to plan for culturally appropriate services, sensitive to culture and faith. This research exercise illustrated the need for culturally sensitive services to be backed up by action in the form of more effective information provision within the Asian community. Information should be provided in community languages in accessible places, such as community centres, doctor's surgeries, mosques and adverts in the ethnic press or radio.
Opinions amongst carers about the provision of information varied widely. No particular conclusions can be drawn that relate to a particular age group of carers or carers in any particular caring situation. Carers in contact with carers' support centres felt well informed. The research, however, brought out a number of issues in relation to information, which it is important to take into account in looking at future support for carers.
Information on services and benefits
Carers cannot access information from any central point. Most carers we spoke to discovered relevant information by chance or through word-of-mouth. Many suggested that GP surgeries would be a good point for providing information. Some carers even suggested that providing information to people who find themselves in a care situation should be mandatory. More often than not, information is focused on the cared-for person and not the carer:
'…it is difficult to get information as a carer - lots of services provide advice for the needs of the caree, but often see the carer as an "add-on". When the caree is ill, carers get tired, frustrated, ill and angry - sometimes services get focused in the wrong direction.' (Carer with mental health problems, Glasgow)
It was particularly difficult to access information in rural areas:
'Information can be pretty scant to be honest. You discover things as you go along. People don't tell you what is available.' (Carer, Western Ross)
Carers found it difficult to get information on the benefits they were entitled to, such as the Carers' Allowance, council tax reductions and Disability Living Allowance. In most cases, they felt that they were seen not as people in need but as another possible expense, and therefore those providing information were not forthcoming. Many carers who opted for Direct Payments felt that obstacles were put in their way:
'It's a kerfuffle. It is means tested, which annoys me. If somebody has cancer no questions are asked about the amount of care provided to them. If it is Alzheimer's or dementia it is just - you've got money and we want it.' (Carer of woman with Alzheimer's, Kirkcaldy)
'Sometimes they don't see people; they just see how much it will cost.' (Carer, Edinburgh)
Many carers, in particular young carers, felt that medical and other support staff did not always explain terms or situations clearly enough to them. They felt the more they understood the condition(s) of the people being cared for, the more they would be able to deal with the situation.
Many carers felt there was a need for wider society to be educated on unpaid carers, including in local schools. Young people with normal circumstances at home often had little understanding of the plight of young carers. The need for the education of society on caring was also emphasised by many other carers. One carer illustrated this well:
'I've given up my whole life. I want to be recognised. The authorities should recognise me. When I go to the hairdresser they ask me is this your day off? When I say no, I care for my son, I am made to feel lazy, like I am not able to work. The public needs to be educated as well.' (Carer, Edinburgh)
Many carers emphasised the need for an effective two-way communication process between carer and service providers, such as social services and health services. Often the carer is not recognised as an equal expert on the person cared for, or involved in decisions. This lack of involvement as a partner in caring is a source of great discontent amongst carers, young and old:
'They don't involve you as a young carer.' (Young carer on social workers, Isle of Skye)
'I know my mum inside out. I know when she is hyper. When you are trying to explain the situation to people they think you are making it up. They are just seeing it with tunnel vision. They don't pick up what is going on with my mother. That's what you are up against all the time - someone telling you she is all right.' (Daughter caring for a woman with mental illness, Fife)
'They should involve us in assessments because if anything changes in our family it affects all of us. They never involve us.' (Young carer on services working together, Isle of Skye)
3.6 Effectiveness of policies to support carers
Most of the carers we spoke to felt that not enough was being done by the Scottish Executive to support and recognise carers. Moreover, they felt that, although more money was made available to carers, it was difficult to access these resources. Carers felt they were treated with suspicion by the system; and were continuously tested through endless bureaucratic hoops, being required to fill in complicated and repetitive forms:
'I get frustrated with the bureaucracy, the rules and the regulations. You have to justify yourself all the time.' (Carer, Edinburgh)
'You need a Philadelphia lawyer to fill in the forms. The forms could be simplified.' (Husband of woman with Alzheimer's, Fife)
'It is almost like the government don't trust us. Sometimes I think they just care about the person with the disability. They don't think about the whole family. They should think of the family around the person with the disability.' (Carer, Edinburgh)
'Do you know the form filling you have to do and the repetition? I used to go and sit at the DSS in the queues. Most of the time I came back, because I couldn't leave him and he was frightened. It was sitting in the DSS. I couldn't believe it. If somebody was able to tell me in our circumstances somebody could come to the house. You can get it, but no one ever told me. It was only when I got the disability allowance and went to social services they said someone could come out. You have to repeat the same thing over and over again. It is such a long haul. The tax office was good. They said they could send somebody out.' (Carer whose husband suffered a stroke, Inverness)
' People are terrified of losing their benefits - when you are filling out the forms, you can put one word wrong and lose the lot. The amount you get given is chosen by someone who knows nothing about your physical condition - if a doctor says you are ill, that should be enough. We shouldn't be forced to do degrading things like climbing stairs and having people poke and prod you to check you aren't a fake.' (Carer with mental health problems, Tullibody)
Carers had different perceptions of the effectiveness of policies to support carers, depending on their age. Elderly carers felt there was little consideration for their plight, in particular once they achieved pensioner status. Many elderly carers experienced financial hardship, because of the extra cost imposed on them because of their caring role, and the fact that they did not qualify for a Carers' Allowance when receiving a pension of greater value. Some elderly carers felt they were penalised by the system:
'You know, the government is always talking about caring for carers. Well, they are not doing a wonderful job. I gave up my job to look after my husband and I did get a Carers' Allowance. Then I became 60 and got my pension. This is a known. I should look after my husband. It is my duty. If you can't look after your husband, who can you look after? But, for my age group, our pension was not good, because we got poor advice in the 70s. My pension is something like £37 or something to that effect. That is what I get. They stopped my Carers' Allowance. I am getting older. I've got quite bad osteoporosis of my own. I am trying not to moan about it. Life is getting harder for me to run a house, look after my husband and my grandchildren. My personal money is limited. That is my lot. I try not to be a burden on social services. I don't even take all the respite.' (Carer in her 60s, Inverness)
'The government is ageist. Life according to the government stops at 60. There is no outlook to older people. I've lived in Germany and the way they treat their elderly people is so much superior. It is not fair.' (Elderly carer, caring for a husband and an aunt, Edinburgh)
Elderly carers also felt that, although it was part of the government's policy to keep people in their own homes as long as possible, there was a real need for suitable sheltered housing for elderly people caring and being cared for. This was particularly prevalent in rural areas.
Many young carers felt more should be done to create support organisations and respite breaks for young carers, to give them a chance to take a break from their caring responsibilities, and to have the necessary emotional support to make them feel more confident socially. Those young carers who had access to young carers' groups felt very supported by them, and valued the informal atmosphere and non-threatening environment to talk to the workers at these groups:
'Without the Project I would be dead; it links between home and school and others to help explain things. It's not just about workers caring but helping with my education and health. The breaks are useful; the only time I get out. They can also get in touch with others who can help me.' (Young carer on the value of the young carers' project, Isle of Skye)
Many carers had grave concerns about their financial future, in particular when they had been a sole care provider and had been caring for a number of years, and were therefore less able to seek full-time employment. They felt the government was not very supportive in recognising their contribution and therefore ensuring financial security for them once they reached retirement age. Furthermore, the ceiling placed on part-time work when in receipt of a Carers' Allowance also limited carers' quality of life. This was felt even more intensely in cases where care was provided to more than one person, or to friends:
'I feel that governments generally don't realise just how much money is saved by having people cared for at home. At the end of the day people are left in a situation that financially is very difficult. Instead of having a career with a proper pension, they spent years looking after a family member. Although they don't begrudge it, at the end of the day they are worse off.' (Elderly carer, Inverness)
'I've done this all my life. I feel it is my responsibility, but I am not allowed to better myself. This is not classed as a job as far as Inland Revenue is concerned. Rent rebates are rubbish. I am only entitled to a Carer's Allowance for one person. Companies who come in and provide home care get paid for what they do. It costs me £25 per week just in petrol.' (Carer who cares for mother and brother in different locations, Fife)
'I have no pension. I've never had any money to put in a pension. If anything was to happen to my son, I am left with nothing.' (Sole carer of adult son with autism, Edinburgh)
'Sometimes I feel like I don't want to be a carer anymore…carers are penalised financially and its not fair.' (Carer with mental health problems, Glasgow)
There is no incentive to provide adequate training to carers to fulfil their role. Many carers talked about the fact that they had received no formal training to lift, bathe and help move around the people they care for.
'I have been looking after my husband for 11 years and not once has anybody shown me how to use a hoist. That is a real problem. Nobody shows carers how to transfer properly. Any individual coming out of hospital, their situation deteriorating, somebody should come in and ask what do you feel comfortable with and not. And the bits you feel comfortable with, do you know how? But they don't.' (Carer, Fife)
'Nobody told me about the state of his condition, what I would need and how I would cope. I certainly was not sure how to get him in and out of chairs, the bath and so on. We accumulated various pieces of equipment through trial and error.' (Carer, Western Ross)
Carers felt that their health and safety was unimportant to the government. A large number felt that the health and safety regulations home care staff are subject to makes them a less useful service, and does not take into account unpaid carers' health and safety:
'I am all in favour of someone not putting themselves at risk in their workplace as much as possible. The realities are if you are looking after someone with a disability who is immobile you are going to need to be able to bend over and move about. We are talking about home care. Home care have taken on board so much health and safety that they are actually safetying themselves out of home care.' (Carer, Fife)
'The thing I have a concern about is that I believe they are getting to a point where they are silly and over the top. At times this impacts on the disabled person's human rights - to be clean and be what they want to be. Nobody is bothered about the carer's health and safety. Carers are putting themselves physically at risk. The reality is if social work says they can't do something because of health and safety and the nursing staff can't do it and it still needs to be done. Who does it? The informal carer - there you go.' (Carer, Fife)
Suitable and adequate respite care provision continues to be an issue amongst carers, particularly in rural areas. Carers felt it was important to be able to place trust in the respite care provided. A number of carers mentioned that respite is often withdrawn at the last minute, with little explanation. Provision for longer respite breaks are often not tailored around groups that require specific types of provision, such as younger adults with nursing and care needs. Many carers continue to depend on family members for the provision of respite care.
Carers in rural areas felt that little attention was given to accessibility of services, such as transport. In some rural areas, such as Eastern Ross, some have started innovative schemes such as an informal taxi service, run by the local community, which is more affordable than a formal taxi service and more regular than public transport.
'Access on buses for the disabled is non-existent. North of Inverness there are no accessible buses.' (Carer, Easter Ross)
People caring for those suffering from less 'visible' conditions felt very unsupported by the system. They emphasised the reluctance of health and social services to provide support for those suffering from mental health problems and alcoholism, particularly in rural areas, and also to support and recognise carers in their role.
'Because my brother is an alcoholic people won't care. Alcoholism is an illness. If he had any other problem they would have helped him. No one takes it seriously. It is hard to see someone you love destroy themselves.' (Woman caring for her brother with alcoholism and mother with mental illness, Fife)
'I am thousands of pounds in debt. There was nothing in the services. They never mentioned any support. I am not getting any help other than what I pay for. They (the GPs) just walked away. They are not answerable to anybody.' (Carer of son with mental health problems, Easter Ross)
Carers suffering from mental health problems and learning difficulties also talked about being stigmatised by society, particularly in smaller towns and rural areas. Some carers in these groups were prepared to be more open about their condition than others.
'The stigma attached to mental health problems means people just don't know how to deal with it. I feel like my whole life is encompassed by my caring responsibilities. I just want to be treated normally.. (Carer with mental health problems, Glasgow)
' The stigma attached to mental health must be removed. Because my wife and I are so open about our conditions, people know that they can come to us for advice and help whenever they need to, but lots of people don't have that support.' (Carers with mental health problems, Glasgow)
One carer with mental health problems felt things were slowly changing for the better:
'I have seen lots of changes occur within the last 18 months following the advertising campaigns about mental health - and people seem pleased that they are finally able to talk about their issues, but a lot more needs to be done. Information about mental health issues is much more accessible.' (Carer with mental health problems, Glasgow)
Carers were unanimous that very little was done to assist them in practical ways, from practical help around the house, such as cleaning, changing bulbs, and so forth, to other ways, such as blue badges for parking and assistance with fuel and heating costs.
'It would be nice if there were more practical help available - someone to get our food, help with odd jobs etc - it is the simple things which really make a difference to my life.' (Carer with mental health problems, Glasgow)
3.7 Employer-based support
The vast majority of participants in the study were women and they were concentrated almost exclusively within part-time work, and in particular in the traditionally low-paid occupations in which women tend to be over-represented. Their occupations included child minding and other formal care roles, sales assistants, sessional youth work and community work that allowed participants flexibility on a day-to-day basis. In this sense, employment and career trajectories were often shaped by caring responsibilities, or decisions were made by carers to stay in a particular job because the organisation of work fitted into the rhythms of the caring and family life. The following examples illustrate this:
'I love my job and I chose it before I had any caring. I chose the job because I wanted to be at home and bring up my own kids and I like what I do and I find now that it is very easy within what I do to organise my own life so that the caring doesn't conflict.' (Childminder, caring for her mother in law, Glasgow)
'I probably wouldn't have gone into youth work. Um, it's just because I can only work a couple of hours because of my caring role. I think I put a lot onto my mum with the babysitting and that, so I think a couple of nights a week and the odd weekend is enough for her to watch my son. I would actually have liked to have been a teacher.' (Sessional youth worker mother caring for her son, Edinburgh)
Indeed, some participants had focused on their career and training needs specifically as a result of their caring. The following example of an interviewee who was currently training to be a counsellor illustrates this:
'The hours were a major contribution because when my son comes home, I've got to be there and if I'm not, there's a change of his routine and it would cause him stress, kicking, screaming….But in the long run the decision that I can work part time and when he's at school was the main factor. There's no point me saying I'm going to get a full time job in an office or even a part time job in an office because it just wouldn't suit the holidays and things like that, so in the long run it has made me sit down and think what I want to do career wise.' (Trainee counsellor, caring for her son, North Ayrshire)
Male participants who shared the caring responsibility with their partners tended to work full time. However, where they had sole responsibility, as in the following case of a man who had sole care for his two disabled children, balancing full time work and care was impossible. Moreover, the cost of childminders actually cancelled out the financial advantage of working:
'I tend to choose hours when my children are at school and that was the problem with my last job, although he allowed me to work from my house. There was still an issue about working overtime. He wanted me to work late and I couldn't do it. It meant that I had to get somebody to look after my bairns and it defeated the object because I had to pay for that and it takes most of your money. In the end we had a big argument about it and I said you know what you can do with your job.' (Gas fitter, caring for two children, Edinburgh)
Only a minority of employers in the study seemed to be supportive of carers, and most of this support was informal, on the basis of goodwill, where the employee was either a friend of the employer, or where a good working relationship had developed over a number of years:
'My employers are very understanding because there was an incident a couple of weeks ago. My daughter had just had enough and when I went in the morning, she put her coat on and walked out. I didn't know where she was. I've been there for 20 years. I volunteered for a long time first and I am now a paid worker. I encourage people in the community to eat healthy.' (Woman caring for daughter and grandson, Glasgow)
There were two examples of larger employers providing flexible work opportunities for carers: one was a leading bank, and the other was the Post Office:
'They were very good with me. If I needed time away for appointments they were very good.' (Bank cashier, caring for her mother, Glasgow)
'They were great. They were really, really good in that I went to their welfare services and talked to them about my position at home and at work. I didn't know whether I was more stressed at work or more stressed at home. So, I really wanted to continue working because I felt that at least when I was at work I wasn't thinking about the problems I had at home, or how my husband's illness was progressing. So, being at work was really quite good. So they did support me in that they let me work sort of part time and I did that for maybe six months before I stopped work (retired) and that just led to me stopping work altogether…I think they support their staff quite well. I found that they support their staff quite well over a number of years because when my Mum was ill and she died, my husband was just starting with his illness and then they were quite supportive to me as well.' (Post Office worker, caring for her husband who is in residential care, North Ayrshire)
It is, however, unclear whether this was part of a deliberate policy towards carers, or part and parcel of normal flexible working arrangements. A number of other carers also emphasised that they enjoyed working, because it allowed them to be themselves and provided an essential outlet to allow them to carry the emotional burden of caring:
'For my own mental well-being and ability to look after him, I need to continue to work. A lot of what happens with my husband is what I call one-way traffic. Through no fault of his own, he is not able to hold a conversation or do a lot of things. If I don't have something else in my life I would be in the local mental health hospital. I could not do what I do for him unless I worked.' (Carer, Fife)
Carers with mental health problems and learning difficulties emphasised that working was an important tool to make them feel valued and empowered. However, a small number of participants experienced difficulty in accessing employment:
'The careers centre is not doing enough to help him…he needs help to boost his confidence which will help him go out and get a job. He is too embarrassed to go and ask for help. He has problems with literacy but will not ask for support. He sees support as stigmatised and will not accept help.' (Carer with mental health problems, Glasgow)
Education is an issue exclusively for young carers in the study. Young carers talked at length about the disruption to their education as a result of having taken on the sole (or sometimes shared) responsibility for the care of other siblings, a parent or a relative. The impact of caring manifested itself in a number of ways, including prolonged absences from school in order to fulfil care functions, the inability to develop close relationships with school peers because of caring commitments and embarrassment, and the inability to focus on schoolwork because of preoccupation with problems at home. The following young carers described the impact of caring on their education in the following way:
'I found it hard to concentrate. I was worried about going home and stuff, but now it's all right because I'm away from that. She was always drunk and that and sometimes I would go home and have to do the cleaning up because the house would be in a mess and that and I would have to clean it up. It's better now. When it came to tests and stuff, I wasn't doing it right because I didn't know what I was doing.' (12 year old girl with alcoholic mother, Irvine)
'I missed school at times. I felt lost and on my own. When the kids I went to school with spoke about cartoons, I had no idea what they talked about. I felt nobody understood me. I didn't even feel comfortable talking to the doctors.' ( BME man who has cared for his mother since he was a teenager, Edinburgh)
'I used to find it hard and then my mum had to go into hospital and I had to take time off school and I missed all of primary 5 and then I had to go to my Gran's and I missed all of what my teachers were teaching and I failed all my tests, but now I am back to credit classes.' (13 year-old girl, caring for mother with depression, Irvine)
Most young carers felt that schools supported them in their situation, when they were informed about it. However, they emphasised that a lot more could be done to educate schools and other children on young carers. They felt it was very important for schools to treat their situation confidentially:
'It's sort of hard because I have to keep missing school to take care of her but the teachers are all helpful and send work home for me. I've missed it every day this week because my Mum, she's been stuck in her bed. I had to take her to the toilet and help her in her chair and that and help her about the house and stuff.' (15 year-old girl, caring for mother with arthritis, Irvine)
Young carers often had low expectations about their abilities and prospects for the future. They felt responsible for continuing to provide care, and worried about the continued wellbeing of their family members, which might impact on their own education. Many young carers felt that additional support and motivation were essential to young carers:
'They feel there is nothing for them; that they will end up in a dead end job. I feel like that sometimes. I feel there is not going to be anybody out there.' (Young carer on other young carers, Fife)
'I'd like to go away for a while and then return home. I'd like to do something around art. At home I'd need to know that things are safe and that dad is more stable. I don't think anyone else can do this and I'm not sure if dad will accept support from anyone else.' (Young carer, Isle of Skye)
3.9 Carers' health: psychological and emotional support
Caring is demanding, and carers are unanimous in expressing feelings of exhaustion, stress and isolation. Caring implies a lack of freedom and very little time for self. Often, former friends disappear, and carers are left struggling with a range of professionals, sometimes with the support of other family members, and at times alone.
A common concern expressed by carers was the lack of support to help them with the psychological and emotional demands of caring, as they were often isolated and depressed. They often felt that they could not express their emotions to the professionals they dealt with, out of fear that they would be seen as unable to provide care:
'It doesn't matter how well you get on with professionals. You can't say anything to them. You will be immediately branded as an unfit parent. It is such a relief to talk to somebody else who won't judge you. I hate those books about wonderful parents who never had anything in their life, whose caring experience supposedly changed their life so much for the better. I wish sometimes people could be more honest because there had been days I could have screamed.' (Carer, Inverness)
Carers with mental health problems and learning difficulties in particular reported strong feelings of isolation, frustration and disempowerment because of general lack of understanding amongst the public, services and family and friends of their complex needs:
'He doesn't understand the concept of me being ill which makes it very difficult to have time off from caring. I am so tired all the time - caring has had a real effect on me. I lose patience with him and I don't want to - I just can't help it though.' (Carer with mental health problems, Glasgow)
'I have nowhere to turn … I want someone with some insight into what I'm going through - someone who understands mental health issues.' (Carer with mental health problems, Glasgow)
The lack of counselling services as well as lack of knowledge of counselling services was a common experience among most adult carers, whether they were caring for elderly people or young children. External support and information about counselling services is not widely available, although the carers who had accessed such services experienced relief:
'I had always been a bit cynical about things like counselling. The GP said to me three months after my husband died I think you would like to speak to our counsellor. That made a huge difference. She wasn't somebody close to me, or family or a friend. It was a tremendous difference to me. She was able to take a sort of impersonal view of things and stand back. Sometimes you just want a person to talk to quite honest.' (Carer, Inverness)
'There should be family counselling for people that have people with disabilities. They shouldn't have to look for it; it should be given to them. A caring role is enough. We shouldn't have to go to Tom, Dick and Harry to see what's available. One of the golden rules should be counselling. We could do with counselling for the whole family…there are many issues bogging you but where do you go? You just have to grin and bear it and get on with it.' (Woman looking after her husband, North Ayrshire)
The lack of emotional support services for carers was also seen as linked to the invisibility of carers: the tendency to focus services on the person being cared for, leaving carers out of the equation. The Princess Royal Trust and other carer support centres in the charity and voluntary sector were seen as key in providing much needed support, in particular through carers' groups:
'Without the carers group and without that support, I would have found it very difficult. I wouldn't say I used the social services any more than was necessary. This was more support to me, I have to say, than social services, until the stage I am at now where he has to go into full time care and they have been very supportive; but before that, they didn't offer me a support group like this where you could go and talk to people and things like that. This gives me time to talk about it and listen to other people.' (Woman caring for her husband, now in residential care, North Ayrshire)
'Because you can get out of the house, you can meet other people and we don't tend to dwell on our problems but there is somebody there that will understand if you have a problem and will know where you're coming from. We cheer each other up. A therapist usually comes so we'll get a therapy session which is very relaxing, aromatherapy or a massage which is very relaxing so that it gives you a big boost.' (Woman caring for her daughter, North Ayrshire)
'The support group is excellent and probably my biggest source of support. I can discuss my experiences with other carers who understand my situation. The only drawback is I cannot always make the support group because of my caring responsibilities.' (Carer with mental health problems, Glasgow)
Often the lack of provision meant that carers had to establish their own psychological support mechanisms, thus responding to an identified need that was not being addressed by providers of statutory or voluntary services, particularly in rural isolated areas:
'I mean we have set up our own support group on the Island now because we found that there wasn't anywhere. It was through going swimming and all the children with disabilities being put in a swimming class together and we just sort of got talking and we found that there was nowhere for us to meet and discuss our different problems. There's no sort of drop in centre like there is on the mainland. It's been going for almost a year and we've been trying to organise activities for the children. We have applied for a grant, Lottery money. So, we got that. Some of the parents live on the other side of the Island, very remote so it's good for them to have that link and to get together with other parents. As individuals, no one would have known we existed.' (Carer, Isle of Arran)
'We are quite fortunate that in the last 6 months or so there's been a support group set up in Tain. They realised there was a huge need for a support group for parents of children with lots of problems and who don't necessarily have a diagnosis. That's been very helpful. Because my son is in mainstream education, if you go to other autism groups, you kind of feel really bad if you are complaining about your child because these parents have far more handicapped children. At Tain, our children attend mainstream school. We all totally understand that the fact they attend mainstream school has a whole set of different problems. It turned into the sort of group where we can all be really honest with one another. It has been a lifeline.' (Carer, Easter Ross)
Carers with mental health problems and learning difficulties, discussing the services that support them, mentioned the role and the importance of 'befrienders' a number of times. The befriending gave the person who was being cared for an opportunity to have some social interaction, as well as giving the carer a chance to take a break, as the following participant explained:
'(Her husband) used to have a "befriender" who would take him out once or twice a week. This used to be good, but then the standard of "befrienders" dropped. One man was not very nice to him so I stopped him from coming around, when I tried to rearrange with other people, the new "befrienders" just cancelled….now I don't receive any help at all.' (Carer with mental health problems, Glasgow)
Aside from lack of provision, another common issue was the lack of clear signposting to services, and the lack of co-ordination between statutory agencies and voluntary agencies providing counselling and support services. This is because no single agency is held accountable for the well being of carers:
'I think the very first thing is letting people know that they are carers and letting them know that they are entitled to support for themselves. That doesn't happen very much on the health side of things. Unless you have a really on the ball, like-minded GP, they just don't think about it. Part of it is the consultancy time - seven and a half minutes - and they don't want to breach it. Nurses are a little bit better, but we know that there are carers out there that don't know about voluntary support services.' (Carer, Fife)
Although support services did exist for some for young carers in both urban and rural areas, these were limited and constrained by lack of resources. Furthermore, provision for young carers from black and minority ethnic groups is entirely absent. The sensitivity of support services to the needs of young BME carers and how this meshes with cultural traditions is brought out in the contrast between the following experiences of white and BME young carers:
'We just go and have fun…We went to a few amusement parks and we go swimming just to get our minds of what is going on around us.' (White young Carer, Ayrshire)
'Being a young carer but from a minority ethnic community puts a different slant on it again because there are already issues of isolation but on top of that, take my sister, she's 14 and has started to go to a young carers group and stuff, but my dad has issues around who she is going to interact with, what the group is like, if it's a mixed group. He's OK to a certain extent, you know, some things are OK and others are not appropriate. She's at an age when, you know, she's a teenager, and young adult. Who are these people she is spending time with on a more social basis, rather than at school? I mean these are implications for all parents but putting a cultural aspect on it.' (Asian woman sharing the care of her father with her 14 year old sister, Edinburgh)
3.10 Contact with care professionals
The researchers were asked to explore the roles and responsibilities of social workers in particular, so that the findings could be fed into a parallel national review of social work services. Consequently, most of the comments made by carers here relate to social workers, and not therefore to other care professionals such as GPs, statutory community or acute health workers, or staff from community and voluntary sector organisations. This is not intended to single out social workers relative to other professional care workers as the target of carers general dissatisfaction with statutory services. That is, views about other care professionals were not explicity sought as a focus of this research, and so no comparison is made here.
The level of contact with social workers varied. It seemed to carers that social work departments had no standardised system across different local authorities in dealing with the needs of carers. General references to social workers, more often than not, were negative:
'They are shit. They didn't give us rights, lied to us, didn't give information or help when we asked for it. Me and my mum have been left traumatised by it.' (Young carer, Isle of Skye)
'If these people could see what we go through.' (Carer, the Highlands)
'You are told there are people worse off than yourselves.' (Carer, the Highlands) 'People who work in this area are either caring or controlling - my daughter's social worker is one of the controlling types - she doesn't really listen to us….All the assistance I have received with him I have got off my own back.' (Carer with mental health problems, Glasgow)
For many carers, particularly elderly carers or those caring for elderly people, resorting to a social worker had implications in being seen as a 'problem family'.
'People of that generation; they don't want social workers to gossip about them.' (Woman caring for her grandmother, Dunfermline)
Social workers are seen as overworked, untrustworthy, unprofessional and lacking in knowledge and empathy of carers' situations.
'There's far too much social work back stabbing. Far too much. I've been stuck in the middle various times to the extent that I complained to the Head of Social Work about it. I had my social worker complaining about the support manager, running him down, and other professionals were complaining about my social worker. They are just not very professional.' (Carer, Western Ross)
There was also a strong perception that social workers were not dependable and understaffed. The following two respondents illustrate this:
'They are supposed to turn up but very seldom do I get a social worker. The social worker had been on maternity leave but they are very short staffed in that office, so there's nobody really to step in. They struggle to get you somebody to start off with….Most of my information has come from the Carers' Centre.' (Carer, Ayrshire)
'I didn't feel they helped me at all because basically, my son's school has been great and it was them that got me, because he's on a special needs register. They said "Oh, you'll get a visit and the social work department will come down and meet you, tell you all the things that are available". The person that came down actually couldn't help me at all. He said "once your son reaches 18, there's a lot of things and a lot of information I could give you" - that was when he was 15. Nothing. It's like you hit a brick wall.' (Mother caring for her son, Glasgow)
Only a very small number of carers had positive experiences with social workers and were thus able to build positive, long-term relationships (an aspiration expressed by many carers). Staff turnover had a negative effect on the ability to form these relationships. In cases where social workers were perceived as caring, understanding and empathetic, it was evident that they were felt to have the power to make a lot of difference to the quality of life of the carer.
Carers had particular problems with Carers' Assessments, which were perceived as not working, offering empty promises. The following response is typical:
'Carer assessments - you fill them out and send them to social work. Diddly squat happens. They are sitting in a file somewhere in no man's land. I know, I've filled one out; no response. I filled out a large number for other people. I can count on one hand the number of carers that had a response. It is definitely not the be all and end all.
They are sitting in one place and are not even being acknowledged. My concern is that social work departments say, we do our carers assessment, like a little box ticked. It is meaningless unless something comes from it or it is at least acknowledged by someone coming out and going over the issues with the carer. It is actually very tokenistic. If someone fills out an assessment you have at least a certain expectation that something will happen.' (Carer and carer support worker, Fife)
Carers emphasised information when talking abiout the type of service they wished to receive from social workers,. Social workers could be good sources of information on services, welfare benefits and practical support for carers. While this was seen as important in urban areas, the need for social work support took on an even greater significance in rural isolated areas where services were percied and 'few and far between'. As an interviewee who cared for her autistic son explained:
'Everything is isolated and I think if you had a social worker you could access more services because what they say is, what you don't know you don't know sort of thing so they sometimes put everything together and get you the help that you need.' (Woman caring for her son, Isle of Arran)
3.11 Priorities for carers over the next 10 years
Most carers found it difficult to think about the future, first because they felt that the current level of support was not satisfactory, and secondly because thinking about the future was daunting - that many carers feared for their own health, and therefore their continued ability to provide care.
Within this context, carers expressed the view that the concerns and difficulties they had currently would multiply and become more acute as they became older. However, they identified a number of priorities for enhancing access to support services, as well as the delivery of support services. These are set out below, not in any order of priority:
1. Recognition of carers
The role of carers should be properly recognised. For some this meams caring being regarded as an occupation and supported accordingly by the Government, both financially and other support. Others expected the same rights and access to support that paid care staff receive, such as free health checks, inoculations, health and safety training. Carers expected to be treated as equal partners in the caring situation.
2. Transformation of care models and mainstreaming
Mainstream support services need to ensure equality of service provision and the cultural appropriateness of provision by making BME communities central to the planning, promotion and delivery of care support services.
3. Funding for voluntary and community organisations
Carers saw a need for voluntary agencies to have more secure funding to enable them to continue playing an important advocacy role on behalf of carers, thus helping carers to identify and access services, as well as to provide essential emotional and practical support.
4. Care breaks and other support services
Access to respite and short breaks, and the qualityof these services when accesed was perceived by most to be very poor. More support needs to be made available to assist carers in the next ten years, including care breaks, outings for the people they care for, and assistance in the home customised to the needs of the whole family rather than determined by statutory agencies. Respite care should make provision for people of different ages and with different conditions.
5. Future planning for carers of children
More effective forward planning for the care needs of children with disabilities is needed, so that parents know what will become available from the outset, rather than being faced with a situation where there is nothing in place to enable them to cope with the transition from caring for a child to caring for a young adult.
6. Targeting of information
Information needs to be targeted more effectively at all groups of carers and the wider public, through schools, community centres, doctors' surgeries, churches, mosques, local radio and the ethnic press; in various community languages; and through better co-ordination between carers' organisations and statutory and voluntary agencies.
Carers need more counselling services, on an individual basis or as families, to help children as well as parents cope with the demands of caring.
8. Benefit entitlements
Carers experienced the benefits system as complicated. Bureaucratic obstacles to carers claiming financial assistance need to be removed, and carers need more assistance with form filling and transparent advice on benefit entitlements.
9. Bilingual workers
Services should employ more bilingual workers, to provide the necessary support to BME communities, either in their own homes or in community-based establishments.
10. Support for elderly carers
Elderly carers need more support in the home to enable them to continue in their caring role if their own health deteriorates, to prevent the person they are caring for from having to go into a residential establishment.
11. Support for young carers
Young carers need more support and motivation, in the form of informal breaks and carers' projects and wider recognition of their contribution.
12. Support for carers with mental health problems and learning difficulties
Carers with complex needs need more support to help them access services in a fair way. There is also a need to continue to target the prejudices of the rest of society and perceptions of mental health problems.
13. Assistance with fuel bills and other practical support for carers
All carers, not just the elderly, need assistance with fuel bills and other practical support, since caring often means being in the home all day with the person being cared for.
14. Island and rural carers
Carers who do not live on the mainland or who live in rural areas need more support services.
15. Consultation and partnership with carers
Consultation should take place with carers who are actually doing the work, not carers' organisations, because a limited number of carers actually engage with these organisations due to a lack of knowledge.