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This project centres on the response from a group of service users who have been diagnosed with dementia and attend a day care service in the Perth and Kinross area to a consultation regarding the future delivery of care for older people in Scotland. Clearly, the Scottish government has stated that with the population of people aged 65 and over in Scotland expected to increase by up to 21 per cent by 2016 and 62 per cent bigger by 2031, as well as the increasing cost of funding health and social care – hospital and care homes particularly, there is an urgent need to do things differently in order to be able to continue to provide sustainable and affordable and high quality care for older people in Scotland (Scottish Executive 2010). With the projected growth in the number of older people expected to create additional significant demand on care and support services; the question thus arise; what is to be done to reshape the delivery of care services in the future given these projections? The consultation exercise focused on two main areas; responsibility for paying for the personal care of older people and the type of care that service users prefer.
Free personal care for older people (aged 65 and above) was introduced in Scotland in 2002 after the Community Care and Health (Scotland) Act 2002 (hereafter referred to as CCHSA 2002) received royal assent. The background for the introduction of the policy is in the recommendation of the Royal Commission on Long Term Care (1999) which states that personal care should be available after assessment, according to need and paid for from general taxation. Scotland alone as Bowes and Bell (2007) noted, of the jurisdictions of the United Kingdom implemented the recommendation of the Royal Commission on Long Term Care (as above). In respect of the CCHSA 2002 which is the legislation that implements the policy of free personal care, personal care is defined under the Regulation of Care (Scotland) Act 2001 as including help with continence management, personal hygiene, mobility, assistance with eating, support and counselling services, personal assistance such as help getting up and out of bed, as well as help with medication.
Many social policy commentators and researchers as well as various stakeholders have described Scotland’s free personal care policy in various ways. Blair (2002) for instance views the free personal care policy as representing the very least that could be offered to older people with enduring ill-health, while Age Concern Scotland (2009) described the policy as successful in helping older people remain living independently in their own home instead of moving into residential care. While Dickenson et al. (2007) viewed the advent of the policy as a ‘defining moment’ in the development of political devolution in the United Kingdom, Bowes and Bell (2007) described it as a ‘flagship policy’ of the Scottish Parliament and representing a ‘considerable investment’ by the administration. In a much less enthusiastic tone however, Ferguson (2005) noted that the recommendation made by the Royal Commission on Long Term Care (stated earlier) was initially rejected by the Scottish Executive as being too costly and that it was later accepted by the Scottish Executive in order to avoid parliamentary defeat.
However, despite the success of the policy thus far and its political impact as briefly highlighted above, there is a growing concern in relation to its long term sustainability especially with the projected growth in the population of older people in Scotland (mentioned earlier) and the concomitant pressure on the public purse. For example Sutherland (2008) and Bowes and Bell (2007) both highlight the inadequate consideration of the cost of the policy, as well as the report of the Scottish Parliament Audit Committee (2005) which was very critical of the Scottish Executive’s failure to fully understand the cost of the policy.
Bell et al. (2006) noted that there had been an apparent shift in the balance of care towards increased provision of care at home in Scotland before the introduction of the policy of free personal care and has remained the case since the policy was introduced, and remains one of the strongest points in relation to the aims of the policy. Bell et al (2006) further posit that the free personal care policy may have served as a logical solution to what the Royal Commission on Long Term Care (1999) termed the ‘particularly problematic boundaries between health and social care’ in relation to people with chronic conditions such as dementia whose social and personal care needs result from a medical condition. If we agree with Bell et al here, we can see implications of the policy of free personal care within the integrated services and processes such as single shared assessments – designed to encourage and support flexibility in services thus providing better choice for service users, while also promoting equity through standardisation (Alaszewski et al 2004).
The main aims of the policy of free personal care according to Scottish Executive (2005) include; encourage and help older people to remain and stay in their own homes for as long as is practicably possible and reasonable to do so, as well as provide personal care services on an equitable basis based on an assessment of people’s needs. Only one of the service users (out of a group of twelve) who participated in the focus group consultation for this project said she would prefer to go into residential care rather than to receive care at home. This further highlights the already well documented preference of older service users for care in their own home rather than move into residential care – a major aim of the policy.
Why the Policy is important: The policy of free personal care has been shaped by, and since its inception has shaped other policies in a number of ways – both expected and un-anticipated. This interaction with other policies has been mainly in community care and spans social care and health, pensions and benefits, housing, rights and citizenship settings. One of the policy aims pursued by government in the United Kingdom has been the de-institutionalisation of social care; whereby social care is moved away from institutional settings to the community which according to Godfrey et al. (2004) reflects the general preference of older people to receive care at home and within their own communities (also expressed by the focus group participants for this project). The free personal care policy can be seen as a very important policy therefore as it supports care at home (a view shared by the focus group participants for this project) by providing older people with a lot more choice; for example, they can choose when and if they will move from home care into residential care.
According to the John Rowntree foundation (2006) the policy of free personal care for older people in Scotland has created a fairer system of care as well as well as reduced means-testing and money worries for those families with modest or limited means. This is also one of the important issues raised by some of the service users who participated in the focus group I facilitated for this project. Some of the participants revealed that things would definitely have been very difficult for them if they did not get assistance with personal care. To further buttress the above point, some of the service users who participated in the focus group were not in support of the government being responsible for the provision of personal care but did however support the provision of free personal care for those with limited means or who do not have a family to support them. One of the points also highlighted by service users during consultation was that the free personal care policy has helped their carers (informal carers) as well because it allowed them more time to carry out other less hands-on support and tasks such as social outings.
Some of the issues the policy aims to address include; a greater understanding of the role of the family, the provision of informal care and the mechanisms which can be further developed to provide support for the provision and recognition of the important contribution s of informal care. The overall design of the future social care makes looking at the policy of free personal care very important because of its direct and indirect interaction with other policies and areas of social care mad health, as well as housing, benefits and pensions, citizenship and rights. Some of the interactions of the policy with the wider objective of shifting the balance of care away from institutional settings towards care at home have already been mentioned. The policy of free personal care has implications for housing, for instance if more and more people are going to be receiving care at home, to be able to live independently with support therefore, perhaps a good number of houses would require adaptations especially for those service users with mobility problems whose own houses may not have been built to barrier free standards. If also look at pension credits, for example, according to the Help the Aged (2005) one implication of the introduction of the policy of free personal care is that local authorities have directed increased efforts towards service user’s income maximisation – meaning local authorities will want to make sure service users claim pension credit if they are eligible for it because it will local authorities will be paying less in fees and thus saving money.
Erskine (1998) argues that the point of departure for thinking about social policy includes the consideration of social issues (for example, the changing demographic structure of society) and the experience of social groups (for example older people) and thus leads to ‘social action’ (Alcock 2008) aimed at addressing the issues identified.
One of the reasons I selected the free personal care policy for my project – apart from the fact that it directly affects the service user group with whom I worked during my practice learning period, there is a wealth of evidence from research which suggests that the current system of adult social care is not sustainable in the longer term especially with the projected growth in the number of older people who will be needing care as well as the severe squeeze on public spending. Clearly, an increase in longevity would be regarded as a sign of success in the improvement of healthcare it also presents a huge challenge. Consequently, the provision of high quality care services and support for older people, given the demographic changes and reduced public finances is regarded as one of the three biggest challenges facing Scotland – alongside economic recovery and climate change (Scottish Executive 2010).
The policy of free personal care is part of the overall vision of the Scottish government to modernise adult care services, make it fit for purpose, a systems that gives choice and control to service users, is responsive to the needs of a 21st century Scotland and shifts the focus away from ‘crisis response’ towards a more preventative approach (Scottish Executive (2010). The provision of high quality care and support for older people is a fundamental principle of social justice and is an important hallmark of a society that is both compassionate and caring, Scottish Executive (2010). This is one of the very reasons why the policy was selected for this project; to gather evidence from service users in relation to their views and opinions on the future of care services and support for older people in Scotland. The value of user involvement and participation in the planning and development of the services they receive cannot be over-emphasised as will be discussed in the next section of this paper.
This project focuses on service users who have been diagnosed with dementia or a cognitive impairment and attend a day centre service in Perth.
Part Two: Reflective Account
Service users’ selection and involvement: One of the reasons I facilitated a response from the service users in my placement agency for the consultation and policy used in this project was because the service users themselves are important stakeholders and are at the receiving end of implementation – they experience it on a daily basis. Service users can be viewed as experts by experience and as such their views and opinions are invaluable assets in the planning and delivery of adult social care services.
All the service users who participated in the consultation live in their own homes and are in receipt of free personal care and thus have firsthand experience of the impact of the policy and are also in a good position as (service users) to share their perspectives on how adult care and support services can be further developed to meet future needs. After initial meetings with my Link Worker and the other members of staff during which the purpose of the consultation was discussed and ethical issues looked at, I spoke with service users individually (with the assistance of three members of staff) in the day centre. I discussed the purpose of the consultation, took the names of those who indicated their willingness to participate, and informed them about the consent form to be made available before the focus group, as well as negotiated a suitable time and date. My placement agency being a day care centre which the service users attend on a daily basis, what I did was to put up information about the time, aims and date of the consultation on the notice board in the dining room as well as the one in the activity room from about two weeks before the date of the focus group. One of the reasons I did this was so that service users are constantly reminded of the date and details of the consultation.
In relation to user involvement, as Ross et al. (2005) points out, there is no single blue print for user involvement as it calls for working with a diversity of perspectives. Importantly, as an emerging social worker who firmly believes in the principles of anti-oppressive practice or what Thompson and Thompson (2001) termed ’empowering practice’ I wanted an approach that would foster service user participation, and support their engagement as much as possible in the consultation. I decided to use Beresford’s (2002) democratic model of user involvement as against the consumerist model because it is much more in line with the purpose of the consultation itself – bringing about change through collective action as well as to give service users more say and control in decisions that affect their lives. In applying the democratic model of user involvement for instance, I encouraged open participation in the focus group. I did not select a particular service user to participate in the focus group discussion, rather what I did was to encourage everyone to participate and the response was very positive as twelve out of thirteen service users participated in the focus group discussion. Two of the participants in the focus group had special needs – visual and hearing impairment respectively. I arranged with one of the three members of staff who co-facilitated the focus group to work the two service users using individual work sheets to record their views and opinions. I provided each participant with a copy of the aims of the consultation, as well as a copy of the agenda for the focus group discussion. I also used one of the pre-focus group meetings that I had with the service users to encourage their involvement; for instance one of the service users asked me if I would like them to tell me only what I wanted to hear during the focus group discussion and I told the service user that I was not looking for them to tell me only what I would like to hear, rather they should express their opinions and perspectives on the issues we were going to discuss. I believe such an approach to user involvement is important for increasing the confidence of participants in the focus group.
Data collection: I used a qualitative rather than a quantitative method of data collection for the project and this was mainly informed by a consideration of what Becker and Bryman (2004) termed the main concerns and preoccupations of the qualitative method – actors (for example service users), meanings and descriptions, as well as an emphasis on flexibility, process and context. The main qualitative method I used was the facilitation of a focus group with the service users in my placement agency as participants. I used a focus group approach to gather data from the service users because it generates data in a narrative rather numerical form. It was also very important for the data collection method to be flexible and take account of the circumstances of the data subjects – in this case the service users are elderly people with dementia or a cognitive impairment and it was very important to put this into consideration. The focus group approach was the most suitable method because it provided a forum within which the service users could discuss important aspects of a policy which directly affects them, and their views on the future of adult social care services is very useful because they are important stakeholders. If we also look at it from the point of view of service user empowerment and anti-oppressive practice, the focus group approach also gives the service users control as they are able to share and discuss their experiences and the interaction amongst the different participants would generate a lot of data as well as being useful and enjoyable. Other sources of data used in the project include; government policy and legislative documents, literature review, as well as publications/evidence reviews from voluntary groups/organisations such as Age Concern Scotland and the John Rowntree Foundation.
Ethical and effective practice: As part of the consideration of the ethical aspects of my work with the service users who participated in the focus group which I facilitated in the course of carrying out this project, some of the things I did include; encouraging participation was voluntary and that consent was obtained from all the service users who agreed to participate in the focus group. I provided each service user with a consent form which they signed as evidence that they consented voluntarily and that they had the right to withdraw their participation at anytime. I also made sure none of the service users was intentionally or indirectly excluded from participating in the focus group (as mentioned earlier), or disadvantaged.
As mentioned earlier, I two of the participants in the focus group had special needs – one was visually impaired but not blind while the other was hearing impaired and used hearing aids. Some of the things I did to enable their participation in the focus group for instance includes; providing written information in large print format as well as making arrangements for one of the co-facilitators to work with them. I also ensured that they were able to take part in the discussion; for example, asking them politely for their opinions while also making sure (given group dynamics) that the discussion was not being dominated by only those who could actively discuss.
Part Three: Assessing the Impact on Users and other Key Stakeholders
Several participants in the focus group revealed that the free personal care policy has been of help to them and has enabled them to remain at home rather than moving into residential care. Nearly all the participants agreed that personal care should remain free. However, there were strong responses from some of the participants in relation to responsibility for paying for personal care; one participant was very strong on his position that the family should be responsible for paying for personal care, another argued that while he was not against the idea of the family taking responsibility for paying for personal care, he was being considerate of those who did not have a family or who simply could not afford it because they had very limited or no means at all. The participant with the latter argument suggested that older people should be means tested for the receipt of free personal care. Another participant also argued that older people should continue to receive free personal care because they had spent their working years paying taxes and national insurance and should therefore be taken care of by the state. All participants in the focus group emphasized the important role of informal care and the support they receive from their family members, only one of the participants revealed that she would prefer to go into residential care – her reason being that she lives alone in her home and would feel safer in residential care. Several participants said they would prefer to remain in their own homes for as long as possible and free personal care has been contributory to making this possible.
There is a strong suggestion from the government documents consulted for this project and publications from key organisations such as the John Rowntree Foundation, that the free personal care policy has been very successful as confirmed also by the participants in the focus group for this project. However, there is also a strong tone of concern (in most of the government publications and evidence reviews) vis-a-vis the financial implications of the policy given the projected growth in the number of older people by the year 2032. For example, if we look at housing, a greater proportion of older people receiving care at home would perhaps increase the demand for housing and housing related services (Scottish Executive 2010). Age Concern Scotland (2009) noted with concern that much of Scotland’s housing stock is not easily adapted for someone with mobility problems, and with the balance of care increasingly shifting towards care at home (with free personal care and personalisation as potent drivers) there are implications for local services and the design of communities in the future.
Most of the participants in the focus group were diagnosed with an early onset of dementia – meaning their dementia has not reached an advanced stage and so do not lack capacity. One impact of free personal care for this group of service users is that it has given them choice; they can choose to receive care at home or take up residential care. Nearly all the participants expressed preference for care at home, increased support, choice and flexibility for their family and informal carers, as well as support to keep them (person with dementia) in their own home for as long as possible – even during advanced stages of dementia. Participants also said they would like to see more choice and control; some of the participants expressed disappointment in the fact that while they are often consulted with about their opinions, some of the important things they need are not provided. The service users would like to be more involved in decision making as one of the participants in the focus group said; ‘I can tell you a problem that is niggling me and close to my heart and you can go away and promise to do something about it without doing it.’ Generally, the participants in the focus group appeared to be more concerned about the quality of the services they receive than the cost or who pays for it. The participants all said they wanted services that are reliable as well as responsive to their individual and changing needs.
Two of the participants with other disabilities – visual and hearing impairment respectively, also agreed that while the free personal care policy has added to the financial resources at their disposal, they still feel they have a number of unmet needs. For example, they mentioned transportation and being able to go on social outings, cleaning their homes as well as taking care of their garden as some of their needs which remain unmet. They also appear to have a holistic view of what free personal care entails; they believe it covers all aspects of care for older people. These two participants also noted that while the free personal care policy has enabled them to receive care at home, it is likely that as their conditions deteriorate they may still have to go into residential care and this may perhaps be the case for the larger proportion of older people with disabilities.
In terms of the wider implications of the free personal care policy, one of main objectives of the reshaping care programme (Scottish Executive 2010) for which this project is based overall, as I mentioned earlier is a shift in focus from crisis response to preventative approaches, Scottish Executive (2010). This renewed emphasis on preventative and early intervention approaches by the Scottish government Dickinson et al. (2007) believe would be helped as free personal care may make older people more willing to contact their respective local authorities and thus provide some scope for early intervention and preventative work.
As we can infer from the findings and evidence from research presented in this report thus far, the provision of free personal care is just one aspect of the overall picture of services and support for older people in Scotland. There are (as discussed earlier) significant implications for other key areas of public policy including housing, transport, pensions as well as employment.
Part Four: Critical Analysis
The introduction of the policy of free personal care in Scotland as Ferguson (2005) puts it, marks the beginning of policy divergence between Scotland and the rest of the United Kingdom. Ferguson’s assertion also echoes Mooney and Wright’s (2009) account of the difference in the way the four nations which constitute the United Kingdom view, experience and organise policy responses to their social problems. The policy has been largely welcomed and viewed by various stakeholders as part of a Scottish solution to Scottish problems. Drake’s (2001) assertion that social policies are not created in a vacuum but are guided by values, principles and objectives is perhaps useful here when we look at the overarching principles and values which underlie the policy of free personal care. For example, Scoot and Mooney (2009) posit that the promotion of shared citizenship and social justice, as well as the alleviation of the effects of economic inequality are some of the essential principles of the policy. While these principles and values were never quite in doubt in relation to what the policy stands for, one of the points raised during consultation (in the focus group with participants from my placement agency) and as stated by the Care Development Group (2001) is the issue of equity of access for different user groups – in this case for example, service users with dementia. According to the Care Development Group, free personal care is right in principle because it removes the discrimination previously encountered by older people with chronic or degenerative conditions such as dementia who require personal care.
The findings in this project are critically analysed (in this section of the paper) in relation to the specific topics covered in the focus group. The three topics are; responsibility for paying for care, the preferred type of care, and planning for the future.
Responsibility for paying for care: As I mentioned in previous sections of this paper, participants in the focus group expressed mixed views concerning responsibility for paying for personal care. Although most participants agreed that personal care should be provided for older people and paid for by the government, there were some participants who held very strong opposing views and argued that the family should either pay for personal care or at least make some financial contribution (co-payment) towards it. Another participant also suggested the introduction of means-testing to the policy so that only older people with limited means receive free personal care. Overall, participants in the focus group discussion did not appear to be too concerned about the cost or who pays for personal care. The participants revealed that they were more concerned about the quality of the services they receive, ensuring that such services meet their individual needs and are able to remain in their own homes for as long as possible and spend time with their families. Sutherland (2008) reminds us that while free personal care is currently available to older people at the point of delivery, someone still had to pay for it – presently the taxpayer.
On the question of who should be responsible for paying for personal care, findings from the focus group fall under two broad categories; selective access and universal provision. Both categories perhaps raise a number of interrelated issues including; rights, citizenship, choice, empowerment, as well as the redistribution of welfare resources which according to Hills (2008) is central to the appraisal of social policy. If we apply Drake’s (2001) conception of the function of rights to the above findings from the focus group, most participants view free personal care as something they have a right to (as older Scots who had spent their working lives serving the country in different ways) receive and it confers certain benefits on them; choice and empowerment particularly as they can now choose whether to receive care at home or move into residential care as one participant even revealed ‘at least I will not have to sell my house to pay for my personal care.’ While it was evident from the focus group as I mentioned earlier, that service users had a holistic view of what free personal care entails, some of them were also not aware of or perhaps considered the wider implications of the cost of the policy – for example the implications for housing as I also discussed earlier. The cost of the policy in the longer term has been highlighted in worrying terms by many writers and commentators on social policy, as well as the by Scottish government. Considered against the backdrop of Scotland’s changing demographics, evidence from the literature consulted for this project suggests that the policy may not be sustainable in the long term. For example, in an independent report on the free personal care policy by Lord Sutherland (2008) it was argues that a more holistic view of public funding arrangement would be required because the policy is only sustainable (under the current arrangement) over the next five years after which the impact of a rapid increase in the number of older people and demographic change will begin to set in. The question then arises; why was the financial implication of the policy not strongly considered before the machinery of implementation was set in motion? There are a number of arguments emanating from several of the literature consulted for this project in relation to the financial cost of the policy and there are suggestions as I highlighted earlier, that costing the policy has been inadequate and that the policy had more of a political aim (Sutherland 2001; Eccles 2001).
Blair (2002) posits that social policy plays a pivotal role in the construction of later life itself. Blair’s argument that older people are often discussed and defined in reports through the psychological distance of demography, deficit and economics (Blair 2002) is evident in most of the reports and evidence reviews consulted for this project thus beclouding the reality that many older people are already doing well for themselves without or with very little state support as one of the participants in the focus group discussion said ‘we are already doing enough to take care of ourselves but what is wrong with receiving free personal care, have we not worked for it’?
The preferred type of care: As I reported in previous sections of this paper, only one of the participants in the focus group said she would prefer to move into a residential home. She cited fear and insecurity when her health deteriorates as the main reason for her choice of residential care. As is already well documented in research (Dickinson et al. 2007) older service users would prefer to stay out of the formal system of care for as long as possible given the choice. Although participants in t
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