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Marie - When we are working or inspecting a service it's really important we keep in mind legislation, not just legislation about care but also overarching legislation like the human rights act and about people's rights under the human rights act - which do not go way if you use a care service, or if you lose capacity. But sometimes those rights can be a tension for people because you can't always meet what everyone wants. Particularly the human rights when people are living in a communal situation. What we need to do it assist services to look at the Scottish Human Rights Association who have done a lot of work with the care sector, and we can use PANEL approach to look at decisions about rights and when or not they are upheld we have to have very clear reasons why they are not upheld. For most people human rights are a fundamental aspect of all our lives and should not be taken away from us because we go into care.
Marie - There is lots of new technology out there which allows people to live in their own home rather than going into a care home. For example, you can turn off someone's cooker so they can't burn themselves and someone coming in to do their meals. You can also have buzzers for medication, so a reminder goes off and says take your medication and gives people that reminder. If the front door is opened and someone goes out at night an alert system can go to the local authority who will know that person and they will have written down routes that that person will normally take and they can send someone to intercept them and bring them home so that person is safe. So there is lots of technology out there that we can use that is becoming increasingly used to keep people at home, and in care homes as well we are starting to see the use of some technology. Some of the concerns that I have with technology are about the ethics of it and the sorts of technology we are using. An example is CCTV throughout care homes where everyone's every minute it monitored, how would we like that? And it's interesting that a large provider in the UK has just done a survey about using CCTV throughout their services. And relatives were really in favour of it but actually residents have said no, they do not want to be on camera all the time. So there are bits when you can keep people on camera for certain amounts of time, but you need to ensure people's right to privacy, to be treated with dignity and to not have everything filmed is there. So there are ethics around it, and it's time we have a discussion around where that comes in, when is the right time to use technology and when it isn't.
Clive - Another aspect the role of the inspector is to inspect and regulate services in the community. This can be inspecting care at home services; people living in their own homes that have someone come in to help and support them, or attending a day centre where they go into a formal establishment and have staff to support them during the day. The important thing here in both situations is that we ensure that the person is able to live independently, have their own rights, be protected, and that the service that is provided is meeting the care needs that they wish to have and ensuring the care planning information that is provided meets in with the dementia standards and obviously the national care standards that we work with as well... It's important that the service user feels that the care that is being provided to them is what they need and they wish. And this is essential when it comes to care planning, especially when they are being supported with personal care etc., that all the staff members who go into attend to that person know how that person wishes their care to be provided. And they are then protected, and ensured that they are receiving the best care possible.
Heather - We know that dementia doesn't just affect the person living with dementia, it affects the whole family, it affects your friends, it affects your neighbours, where you live so that it extends further, so I think we have to be really careful and really think about the needs of the person with dementia first and foremost and that is not to say we put he needs of the family or carers second, but is to think of people with dementia as citizens in their own right. I think there has been a move to think of people with a cognitive impairment or any kind of, memory problem with not having the full rights of citizenship and for them and maybe for them some of the basic human rights are not applicable to them, we know within the Care Inspectorate that this is not the case, we are very strongly upholding peoples Human Rights within all the services that they receive, but also within society as a whole, we are seeing people coming through, living with dementia who are taking the role of activist of leaders within the community. If we think about the Scottish Dementia Working Group, they were involved at the very first stages of drafting the dementia strategy, the standards, their voice ringing loud and clear throughout all these principles, so it's really important that's the voice we hear first. Now there's sometimes becomes issues where maybe their views of the person with dementia could be at odds with the families and carers and they are living with and a lot of that is around risk. It's understandable, there's lots of risk involved when somebody starts to develop dementia, there's worries that the family can have, but sometimes those risks, the risk of physical harm get the greatest level of priority, so we are very worried about people getting lost, we are worried about people falling over, but we are less worried about what we could call the silent harms, we are less worried about the frustration that comes about because their independence has been taken away, about agitation that comes as a result of having a locked door constantly when you are trying to go somewhere where you want to go, so I think it is really important is that when we look at risk and are working with families and carers and the person with dementia that everybody gets an opportunity to have their say and I suppose one voice is not louder than any other, but we always have to come back to that person who is living with dementia. Looking at their needs, what matters most to them is the crucial part here.
Joe - The Standards of Care for Dementia in Scotland are very useful because they help the public to understand the expectations placed on care services looking after people with dementia, but also it highlights that we expect a lot more than we did in the past. So for example, care services often have locks on the doors. And yes we have locks on our own house doors. But it's about allowing people to have freedom of movement, to come and go as they please and this also related to national care standards that highlight this. So standards are really important because it helps people to be absolutely crystal clear about what expectations people can have. All too often expectations are lower than they should be ... Which brings me to co-regulation. Because if we are relying on the public to be our eyes and our ears it's really important to understand what standards we can expect. If they are expecting less then they are not going to raise issues or come to us with concerns, because they are going to be thinking this is ok, when very often it isn't ok and we need to push services to be the best that they can be. So that people's rights can be respected and people can do what they really want to do when they are using a service... within reason.
In line with key principles underlying the integration of health and social care, we need to move more towards a system of care which maximises and promotes resilience and independence and which supports and promotes the capabilities of the person with dementia at home during the moderate to severe stages of the illness, as they move from self-managing the illness with support to needing more intensive support.
The Standards of Care for Dementia recognise the importance of people with dementia being enabled not only to stay at home and in their community. They should also be, as much as possible, visible, connected and active participants in their local communities - including in social events, the arts, and religious and community groups. Nurturing and supporting dementia-aware and dementia-friendly local communities is important in creating and sustaining a society where people with dementia and their families and carers feel included and at the heart of the community.
Promoting and protecting the rights of people with dementia is a fundamental part of your role as an inspector, and you are in a position of great responsibility in ensuring that the rights of people using services are preserved. Enhancing your knowledge and and skills in protecting the rights of people with dementia is therefore vital. Rights are essential for all of us in order that we can live our lives in confidence and security, and lead a fulfilling life regardless of our mental or physical condition. For people with dementia, the promotion and protection of these rights can become an increasingly important issue. Too often people with dementia are experiencing challenges to their rights; including their rights to participate, and to be regarded as equal citizens. This section is informed by the Charter of Rights for People with Dementia in Scotland and carer's rights.
There is a significant amount of information presented or signposted to here and a variety of different opportunities to test your knowledge both in the c ase studies, general questions presented in the text and alongside the filmed interviews and within Voices of experience and Developing your practice. They can be used for group discussion or individual study.
Alongside this section it is recommended that you access existing 'Rights, support and protection' learning material within another enhanced practice learning resource, titled Enhanced dementia practice for social workers for social workers and other professionals. Material within this resource will support you to strengthen your knowledge of rights based legislation relevant to working with (and when necessary, protecting) people with dementia, their families and carers.
In relation to your own role, and strengthening the links between your practice and Promoting Excellence, you are encouraged to explore the aspirations of Scotland's National Dementia Strategies, the Charter of Rights and others through a lens of co-regulation, and furthermore to explore the concept of citizenship in the promotion and protection of rights for people with dementia. The charter of rights, national strategies and subsequent publications, such as Promoting Excellence and the Standards of Care for People with Dementia in Scotland, have and will continue to influence the values of communities and society, using key messages which include the promotion of citizenship and the universality of human rights.
To help you explore co-regulation and citizenship, some introductory context is written here, and suggested further reading has been outlined within Key resources.
Practically I'd like to be asked
About what's important to me
Rights don't seem to matter here
Try explaining that to me?
If I could participate
Clearly I'd have a say
I'd want to have more control and choice
Please listen to what I say
And yet you keep on walking by
Try as I may
I cannot attract your attention yet
Oh, please listen to what I say
No participation, no voice, no independence, no joy... no reason to live.
Read Ms Teal's story within this resource's case studies
Regulation and inspection of health and social care services for people with dementia is effected by a number of complex factors, not least public service reform and the economic climate. Regulation is becoming more risk based and proportionate in response. Better performing dementia services experience less scrutiny than poorer ones, but how regulators and scrutiny bodies monitor the good services and continue to direct and encourage their improvement poses challenges. Annual returns, self-evaluations and notifications assist monitoring, but these are reliant on services providing relevant and accurate information. The necessity to engage with people using dementia services, carers and communities in monitoring service provision has therefore become even more pertinent in recent years. The process of co-regulation relies on this engagement. Co-regulation is:
"... a process which at its most basic level, entails sharing regulatory responsibilities between the state and regulatees ... the citizen has a potential role to play ... by monitoring compliance and by using, providing and disseminating information on the quality of goods and services."
Sanderson (2011)
Indeed, the ideas of citizenship alongside social justice are recognised by the Scottish Government as meaningful ways to re-engage society (Duffy 2013). Some fundamental factors promoting values of citizenship impact all government policy around health and social care:
The excerpt below from Bartlett & O'Connor (2007) explains part of the value of applying a citizenship lens in improving knowledge and dementia practice. Take a while to reflect on the role of citizenship, and co-regulation, before exploring this section.
"A conceptual shift to the practice of citizenship is important then, because it means the activities of people with dementia take on political as well as personal meaning.
For example, members of organisations like: are doing more than maintaining their personhood; they are effectively repositioning themselves (Sabat, 2003) as active citizens rather than as 'tragic victims of a disease'.
The activities of other people with dementia - out of the public eye - can also be seen as having political as well as personal meaning.
For example, McColgan (2005) describes the actions of a person with dementia wanting to sit in a particular chair in a care home as an act of resistance or demonstration of resilience rather than behaviour based on cognitive decline.
A lens of citizenship provides us with the impetus and language to recognise behaviour that might otherwise be seen as idiosyncratic, as the exercise of power."
Bartlett, R. and O' Connor, D (2007) From personhood to citizenship: Broadending the lens for dementia practice and research. Journal of Aging Studies,21(2): 107-118.
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