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Blog 2: Privacy for those living with dementia

“I just want some privacy, is that too much to ask?”

I have memories of shouting this rhetorical question in my teenage years as a result of sharing a room with my younger sister growing up. What do you think of when you think of the term privacy? Is it the time you have to yourself in the car on the way home from work before you pick up the kids, writing a journal that no one else has access to or maybe you like to escape into nature for the weekend and go fishing. All these instances fulfil our human need for privacy which include having space and most importantly the conditions to be able to think, reflect and process the World around us. Realising a certain degree of privacy when you are a single healthy person is easy enough to achieve but what about when someone has a health condition like Dementia that requires 24-hour care and support?

These factors drastically change how the right to a private and family life and correspondence (Article 8 European Convention of Human Rights) are realised. Privacy is a vital human right, but it should be said that it can be restricted in some instances. This is only allowed where the authority can show that its action is lawful, necessary and proportionate in order to protect national security, protect public safety, protect the economy or protect health / morals, amongst others. Although it can be restricted like a number of other rights, they still need to be protected, with a special reminder that this may be more difficult for those who live in a group setting or those who have a diagnosis of dementia, as this naturally creates vulnerabilities and barriers for the person. When a person does not have the opportunity for time to themselves or has no space to call their own, no matter how extroverted they may claim to be, they will eventually begin to become drained, burnt out and lose their sense of identity.

 “I like my privacy and I protect it quite vigilantly” – Nicole Kidman

Many celebrities such as Nicole Kidman, Scarlett Johansson and others in the public eye have spoken out against invasions of their privacy. The Duchess of Sussex, Megan Markle sparked backlash after requesting privacy and no photos of her to be taken at her recent outing to Wimbledon. A media frenzy ensued, labelling her in one scathing headline,

“'Tacky' Meghan Markle's Wimbledon row proves she's not like Diana - it's all about her”.

It is interesting how this headline and others like it, lambast celebrities and defame their character for creating boundaries on their personal space and protecting their basic human right to privacy – a right which we all have. We all have intimate moments that we don’t want to share with others. There is no entitlement to an access-all-areas pass to someone else’s life, no matter who they are or what status they have. There is a cultural belief mostly held in the UK and USA that privacy is linked in some way to secrecy and deviant behaviour. Take for example when someone chooses not to use social media, our culture has shaped us to be suspicious of this choice. We assume the person is mysterious and yearn to know more about aspects of their lives they must be hiding from the World, when in fact, they simply do not want to share private moments on the internet. With this in mind, how does this then relate to those in a care home with a diagnosis of dementia that may have difficulty in expressing verbally how they feel about their privacy or do not want to share their thoughts on issues with staff or family members. How can we understand, support and maintain their right to privacy whatever their choices may be?

What does privacy look like for those that call a care home ‘home’?

For the most part the media coverage surrounding care home settings and prejudices that the public hold as a result, are mostly negative. I have heard of assumptions that those that live in a care home do not have access to basic amenities or private space which could not be further from the truth and it is these types of views that are damaging and insulting for the social care workforce that work tirelessly to make sure that people living in a care home are well cared for and looked after.

Residents living in a care home have their own unique backgrounds, different talents and ideas about what they enjoy, different needs and different levels of ability. It is therefore important that their individuality is respected. One person’s idea of privacy may be different to another’s. Privacy does not solely refer to physical space it is also the right to have:

  • Modesty when bathing and dressing
  • Privacy when one's personal circumstances are discussed by others
  • Respect for personal space
  • Respect for wish to be alone or spend time with other people
  • Respect for private correspondence
  • Respect for private letters and phone calls

(Age UK, 2019)

Rights Made Real in Care Homes Project and Privacy

Throughout the Rights Made Real in Care Homes project there have been many discussions around the right to private and family life; what this looks like in practice and the art of balancing people the right to privacy for all residents whilst living in a group setting. In Laurel’s Lodge care home in Aberdeen their project is concentrating on building staff levels of confidence in anticipatory care planning through participatory workshops with the overall aim of enabling staff to feel more confident in exploring resident’s wishes in their final months, days, hours before and after their death.

One member of staff commented that although one resident was very outgoing and vivacious in life, she made the decision that she wanted a private funeral. During a workshop it gave us an opportunity to explore how this made the staff member feel, taking special consideration that she had built up a relationship with the resident.

 

The staff member replied that,

“That’s what she wanted, and that’s that”.

 

Once we explored this in more depth, it was evident that the ACP workshops had contributed to the staff member’s understanding that the resident had a right to make her own end of life decisions even when others may not understand them. The care home staff both respected her choice and helped to support the resident with the arrangements that she would have wanted.

 

The care home manager commented,

“If a resident has previously made a decision to have a private funeral, then this must be respected. We always ask the family if the funeral will be private or not, and then I inform the staff.”

 

It is also a human right to have freedom of thought, belief or religion which is covered in article 9 of the ECHR about the decisions you make in your life which is also covered under article 8 of the ECHR which includes the right to private, family life and correspondence. Anticipatory care planning and the outcome-based reviews has made a difference in helping staff to have these important and sensitive discussions with residents and their relatives (when they no longer can communicate their own views) to find out their views. It has also been the experience of staff that many residents do not want to talk about their wishes, which also must be respected.

 

We explored many dilemmas in practice one of which being relatives giving cakes and hard sweets to other resident’s when they came to visit. This kind gesture turned out to be dangerous for certain residents as they were assessed at a high risk of choking. It was interesting to understand how the care home manager explored and navigated this dilemma, keeping the trust of both parties without violating the person’s privacy and revealing the reason why.

 

“I invited our Chef Trainer in the company to one of our relatives’ meetings and discussed about dysphagia. We also have posters in the home to politely remind the relatives/visitors that there are residents (don’t say who) who are at risk of choking and that they should let the staff know if they take in food to their home. So far this has made a difference to us at Laurels as we have cooperation from relatives now.”

 

A creative method was used in this instance to raise awareness of dysphagia and it’s effects without compromising on individual privacy of those in question. Having the knowledge and understanding of human rights and anticipatory care planning has significantly helped to raise staff confidence by equipping them with the tools and knowledge in having these types of discussions with relatives and residents, also by understanding what is important to people and knowing the ethical boundaries in which they have to work within.

 

The care home manager of Laurels Lodge stated,

“I really think that promoting awareness of issues such as dysphagia and how it affects people we care for makes a difference in a way that people are able to participate in their care.”

 

One last scenario I thought about with regards to privacy in a care home setting was how can someone be encouraged to have private time to themselves in their own room with staff knowing they are safe. I explored this with a care home manager who pointed out that their team have checks on their residents that and especially for those who are most of risk of falls or have advanced dementia which makes them more vulnerable to risk. She also mentioned the important role and use of technology is vital in supporting the team to do this without the resident’s feeling like they are constantly being monitored. Specifically, this is done through using falls pendants, falls mats and other smart technology all of which help to promote a resident’s independence and maintain their privacy, as well as good practice and adhering to the Health and Social Care Standards by realizing the care home is the person’s home e.g. remembering to knock the person’s door before entering and respecting their privacy.

Privacy and Technology

With the dizzying pace of technological development over the last decade, the use of technology and innovative design in social care is being harnessed more than ever before. Technology can be used to help older people live independently for longer through falls alarms and electric call monitoring. Smart assistive technology such as Alexa can also be used to help with practical tasks of turning on a light or the kettle. There has been debate and talk over whether Care Bots should be introduced to help with care tasks too, but that’s got a host of ethical issues and is a whole other blog of its own. These technologies can all be used to help people to stay safe, reduce falls, promote independence and encourage better overall outcomes for people and their wellbeing.

Bruce Shneier a public-interest technologist, who has been writing on the issue of privacy in a technological age since 2004 states we need to change our view of what encompasses privacy and that people have a right to maintain their privacy in a way they feel comfortable in order to live a dignified and authentic life. What is the balance between technology that we are happy to have in our home and technology that invades our right to private and family life? Research shows that the typical person in the UK passes under 300 cameras on a daily basis, with their being as many as 11,000 cameras recording on the London Tube at any one time. As a society we have become comfortable with the idea of being monitored. The purpose of this surveillance is to deter crime and help people to feel safe. Sales of home CCTV kits are also rising with a lot of family members using them to help monitor a relative with Dementia from the comfort of their own home.

If it has become acceptable to be monitored in public and now in private under specific circumstances to maintain safety, how long before it is deemed acceptable for surveillance to be used in our homes and should it ever be acceptable under the human rights framework that we abide by. It is so important that we realise our right to privacy and work within ethical boundaries, especially when using technology in the lives of those living with dementia. A group of human rights organisations argued that secret mass surveillance uncovered by Edward Snowden was illegal. The Investigatory Powers Tribunal said that it had been illegal for years before the policy had recently been changed. It is vital that we realise our right to privacy and work within ethical boundaries, especially when using technology in the lives of those living with dementia. So, in summary, the answer to my opening question “I just want some privacy is that too much to ask?”.

It is never too much to ask for the privacy that is yours, by right.

If you would like to stay up to date with the projects you can follow their journey on Twitter.. @rightsrealscot on the website www.scottishcare.org/rights-made-real or my email is [email protected]

 

Thanks very much,

 

Verity Monaghan

Policy & Human Rights Project Worker

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Rights Made Real Spotlight – Jennys Well

This week I am delighted to give you all an insight some of the fantastic work being undertaken by Jennys Well Care Home in Paisley. I have caught up with Stephanie and Linda, the activities coordinators for Jennys Well project which is a care home run by the Royal Blind who mainly support those living with Dementia and sight loss. Their project centres around helping residents to access tailored activities within the care home that they enjoy and benefit their wellbeing.

For the duration of the projects I maintain regular contact with the homes through phone calls and we participate in group zoom calls where all the projects come together and explore a theme and share what they have learned. I aim to visit the homes 2-3 annually to have discussions and work with the staff to untangle some of the intricacies of their project and see where I can best help to grow their learning and understanding of a human rights based approach with regards to their project.

Embedding a human rights-based approach is critical in upholding the values and principles included in the Health and Social Care Standards, by treating the person with dignity and respecting their wishes which is central to the work that we do. Whether it be finding out what is important to the person and then keeping them at the forefront of the decision-making process or supporting them to be able to play an active part in their community and being included in family life. This can be especially difficult for those with advanced dementia or sensory impairment and sight loss but Jennys Well are proving this can be achieved through creative means and technology too.

One resident loves going for a walk in the rain which may seem unconventional to most; however, it makes them feel invigorated and alive.

We discussed how they found out this information and discussed the importance of recording these seemingly subtle activities in a person’s day and how it was shared with the rest of the team in a meaningful way. The activities coordinators decided to display some pictures on coloured paper around the home at eye level as the update boards were not being used as much. They have now become a discussion point for relatives when they visit and it also helps residents who like to walk around the home. It is a great way to reminisce and remind them that they have taken part in activies and anjoyed them before. One resident was excited on seeing a photo of herself during an activity and exclaimed,

 

"Is that me? Is that really me?"

Understanding the culture and the conditions of a project has been vital in being able to help gain insight into where the staff team’s knowledge of human rights and to help them understand what is working and what isn’t working.

Stephanie, Linda and myself spent some time reflecting on the activities; what was working, what wasn’t working and what their thoughts were around why. They made a change in the set up of their team and now had one member of staff upstairs and one downstairs and one “floating” between the two floors and they felt this worked well as the home is spread over a large area and it means it was extra support If someone wants to go a walk or to the shops.

Stephanie advised me that 6/7 people are able to go outside safely for fresh air and by being able to get outside she is seeing a marked change in the presentation and moods of those residents.

Partnership working between activities coordinators and support workers is an essential part of how the team can understand and build relationships with the residents and get to know what they enjoy and want to be involved in. They now have a 10-minute huddle where they can pass on anything in the middle of their shifts that they feel maybe someone needs some more intensive support and it is a good way of keeping communication channels open. We also spoke about how we can help support staff to feel comfortable in doing activities with residents.

We spoke about how important reflection in action is to being able to understand if people enjoy an activity.

Stephanie advised me that they are using skills they already have in practice such as observational and analytical skills, looking out for the nonverbal signs and cues that someone may or may not being enjoying an activity.

This week one activity that jumped out to me was the intergenerational work in partnership with the children from Jennys Well Nursery where they visit once every 2 weeks to do activities together. The residents love it, it connects the residents with others in their community and the children bring such innacence and playfulness to the activity. There has been evidence to suggest that these types of activities connect people with their memories, improving their overall mental wellbeing  They definitely do connect with one another and learn from each other commented one of the nursery workers.

One lady realised the youngest boy was being shy and reluctant to participate and so she naturally began to help him to make his empire biscuit and subsequently helped to support feed him it. On the other hand one of the older boys vivaciousness was helping to lift the mood of the residents who were withdrawn and sullen looking before the children arrived.

This little boy in particular managed to brighten up the day of myself and activity coordinator Linda. Alzeimers Scotland and many other organisations draw attention to the fact that connection across the ages is vital to a person living with dementia and their well being. Disconnection and isolation are often what people with dementia have reported feeling therefore,  having a human connection with someone else is precious and should be encouraged as much as possible...

There was a definite change in the presentation of the residents after the activity with some of them making comments about it,

"that’s really cheered me up you know”

 

“they are little angels”

 

“look at them holding hands, aww!”  

The next thing on the agenda for Jennys Well is to carry out a human rights workshop with the aim of increasing staff confidence in their own abilities and enhancing their skill set, to be able to navigate potential dilemmas in practice.

Stay tuned for next week where we will be looking at one of the other exciting projects and how they are finding the journey of Rights Made Real in Care Homes.

If you would like to stay up to date with the projects you can follow their journey on Twitter.. @rightsrealscot or on the website www.scottishcare.org/rights-made-real

 

Thanks very much,

 

Verity Monaghan

Policy & Human Rights Project Worker

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The essence of social care – our CEO’s latest blog

It was encouraging to read over the weekend research which had been undertaken by Ipsos Mori. It was the latest ‘Ipsos Mori Issues Index – 2018 in review’, which gives a “snapshot” of the top ten major concerns across individual parts of the country. Brexit and its implications was not surprisingly revealed as the most important issue facing Britain, topping the list. However, what it also showed was that Scots worried about the ageing population and social care much more compared to concerns over immigration and crime than the rest of Britain. 16 per cent of people were concerned about social care compared with 11 per cent for the rest of the country. This is at least encouraging considering that ‘Scotland’s population is ageing at a faster rate compared with the rest of the UK, while the population is growing at a slower rate and fertility, life expectancy at birth and net in-migration are all lower.’ When I read the report I was encouraged by the prominence not least because the social care sector as well as facing huge demands in terms of capacity is eagerly awaiting a Scottish Budget that prioritises it rather than provides leftover crumbs from other fiscal concerns. But when people talk about social care what do they really mean? Indeed I am reminded of a senior public official who recently confessed that it isn’t at all clear what social care is and what it’s distinctive role is. There are many definitions, both legal and aspirational, as to what social care is and what it is not. For instance social care whilst it may contain services which are clinical or medical in nature is not primarily about one’s physiological health. For me the role of social care is:

‘The enabling of those who require support or care to achieve their full citizenship. The fostering of contribution, the achievement of potential and the nurturing of belonging.’

That may all sound a bit nebulous but in essence social care is about enabling the fullness of life for every citizen who needs support whether on the grounds of age, disability, infirmity or health. Social care is holistic in that it seeks to support the whole person and it is about attending to the individual’s wellbeing. It is about removing the barriers that limit and hold back and fostering conditions so that individuality can grow and an individual can flourish. Social care is not about performing certain functions and tasks alone for it is primarily about relationship; the being with another that fosters individual growth, restoration and personal discovery. It is about enabling independence and reducing control, encouraging self-assurance and removing restriction, maximising choice and building community. Therefore as many of us have sought to illustrate over the last few years, social care is profoundly about human rights. It is about giving the citizen control and choice, voice and agency, decision and empowerment. All of the above is why social care is critical to Scotland’s future. That is why we need a social care workforce which is valued, well-rewarded and appropriately resourced. That is why we need to undertake necessary reforms and critically that is why we need to properly resource a sector that is a major contributor to Scotland’s economic and national progress. Social care is not the handmaiden of the NHS- there as an adjunct department to clinician care and medical intervention . This why we cannot treat the two as if they were the same. Whilst inextricably linked the healthcare we deliver is vastly different from the social care we should rightly demand. One of the fundamental areas of difference has to do with choice. If I have a medical emergency then personally I want the best clinical care and don’t really want to have much say in who delivers that care as long as they are trained, suitably qualified and supervised. A short term stay in a hospital is very different from the place and people with whom I spend my life. For if I am living with a lifelong condition or need support in any way because of life circumstances or age then I most certainly do want to have more choice and control both over who is in my life as a carer and what the nature of that support and care might be. The critical importance of legislation like Self-directed Support is all about embedding that control and choice, building those rights with the citizen. We are absolutely right to value social care as intrinsic to the fabric of our society and as a marker of the maturity of our commitment to support and uphold one another in community. In the weeks ahead social care will continue to face fiscal and workforce challenge but in those times it will remain critically important that we defend the intrinsic role and distinctiveness of social care rather than acquiesce in attempts to limit choice, control outcomes and thereby restrict individual rights. It is to be celebrated that Scots care about social care and the ageing population and it is incumbent upon all of us to ensure that social care is advanced and protected in the years ahead. Donald Macaskill @DrDMacaskill

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Re-discovering Compassion: a new blog from our CEO

The start of a year is always an opportunity to look forward, to resolve to do things differently, to relate in a different way and to change direction. It is therefore a risky time. The desire for the new can risk sweeping away the best of the old; the energy to innovate can risk draining sense from what is commonplace; the urgency for change can risk the loss of the safe and familiar. The necessity of action can risk the way we relate to others. The first few days of 2019 have filled me personally with a growing sense of dismay and on occasion real concern about the cohesiveness of society. There seems to me to be a growing sense of dis-ease and a lack of compassion and care in politics, in many of our communities and in the wider media. This personal unease was articulated by the Queen in her Christmas Message when she said: “Even with the most deeply held differences, treating the other person with respect and as a fellow human being is always a good first step towards greater understanding.” These words were immediately seized upon and considered to be a veiled reference to Brexit. Be that as it may I would suggest they have a wider resonance at the start of this year. Compassion is central to all good and meaningful social care. Indeed compassion is one of the five principles which underpin our Health and Care Standards in Scotland. Sadly what seems to be lacking in recent days is a sense of compassion beyond the context of social care and health. Admittedly compassion can be a bit of a nebulous word but it has some essential elements. Compassion conveys a sense of sympathy, fellow feeling, empathy, understanding, and tolerance. It is not surprising therefore that the concept of compassion is central to good care. We recognise that the best of care in care homes and of care in an individual’s own home requires staff who are empathic, sensitive and able to relate and get alongside others – even when personal feelings may make that relationship challenging. Care involves developing the art of being professionally compassionate. The scenes of angry crowds shouting down politicians outside Westminster in recent days, the vitriol and violence expressed on social media and the horror of several murders in open and public spaces in the last two weeks seem to paint a picture of a society which has lost the capacity to be compassionate. Now I immediately accept that this analysis on its own is too simplistic not least because the tens of thousands of staff in care homes, homecare and in doing jobs in the NHS and elsewhere are daily illustrations of compassion in action. But… I suspect we need to recognise that civil society and cohesive communities do not just happen but that they need to be striven for and built. I suspect that the ability to dialogue with difference and to discover reconciliation and compromise is something that has to be developed and worked at. I suspect that the resolution of the massive political and economic challenges we face in the next weeks and months can only be achieved by shared collective resolve and mutual respect. Compassion needs to become the energy not just of professional carers but all who would seek to lead us politically and economically. If we are to move forward on so many issues whether Brexit or a Scottish Budget, whether reform of social care or education, then I suspect we need to rediscover the spirit and power of compassion in civic and political discourse. I believe it is perfectly possible to hold strongly held political and philosophical beliefs without that requiring the disminishing and devaluing of the views and values of others. I believe that it is absolutely right that anger and passion can be utilised in a way which is righteous and convincing. However when anger becomes dismissive and denigrating of the other then it is destructive and dangerous. The philosopher Arthur Schopenhauer wrote ‘Compassion is the basis of morality.’ It is such a political morality we need to urgently discover. The year that lies in front of us will bring undoubted challenge and in the world of social care as elsewhere the necessity to make hard and sometimes painful decisions – I very much hope that it will also bring a discovery of the power of compassion. Dr D Macaskill @DrDMacaskill

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Scottish Care Autumn Care Roadshow

Scottish Care is pleased to announce an Autumn Care Roadshow to take place across Scotland from September through to early November.

These eleven events will provide an opportunity for members and those interested in joining Scottish Care or those who would simply like to hear about our work, to consider the range of topics facing the care and support of older people across Scotland. We will be covering issues facing the care home, care at house and housing support sector.

There will be an opportunity to meet and hear from the Scottish Care CEO Dr Donald Macaskill and the National Director, Karen Hedge.

In every location we are delighted to be able to share the outcomes of a research project conducted by the School of Innovation at the Glasgow School of Art which has been exploring the ‘Future of Care’ for the care at home and housing support sectors in Scotland.

In some locations an additional afternoon session will be held by our Workforce Matters team who will explore specific themes related to the work they have been undertaking on recruitment and retention, palliative and end of life care, mental health and well-being and other topics.

A programme is available under each diary entry on our website.

Pan Ayrshire: Monday 1st October 10.00-1.30 pm

Highlands: Tuesday 2nd October 10.00 – 3.00pm

Edinburgh and Lothians: Thursday 4th October 10.00 – 1.30pm

Dumfries and Galloway: Friday 5th October 10.00-3pm

Fife: Tuesday 9th October 10.00 – 1.30pm

Aberdeen, Aberdeenshire and Moray: Thursday 11th October 10.00 -3.00pm

Lanarkshire: Friday 12th October 10.00am -1.30pm

Forth Valley: Tuesday 23rd October, 10.00 -1.30 pm

Glasgow and surrounding area: Friday 26th October 10.00- 1.30pm

Borders: Tuesday 6th November 10.00-1.30pm

Each workshop will be highly participative and interactive in nature. Please email Swaran Rakhra, [email protected] if you would like to book a free place(s).

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Our CEOs Latest Blog: Spiritual care is everyone’s business

Spirituality is everyone’s business. Scottish Care has recently launched its latest Care Cameo. Its central theme is spirituality and spiritual care. But what is it all about? Two definitions to start our reflection: “Spiritual care is that care which recognises and responds to the needs of the human spirit when faced with trauma, ill health or sadness” (NHS Education for Scotland,) “A person’s spirituality is not separate from the body, the mind or material reality, for it is their inner life. It is the practice of loving kindness, empathy and tolerance in daily life. It is a feeling of solidarity with our fellow humans while helping to alleviate their suffering. It brings a sense of peace, harmony and conviviality with all.” (Spiritual Care Matters, NES 2007) As will be clear once you start exploring the Cameo, there are many divergent views on what is meant by ‘spirituality’ and also what it means to offer and deliver ‘spiritual care’. This is for some people a difficult area both to explore and to engage with and that is precisely why we decided to dedicate a Cameo to this important issue. It is written by three authors with a particular experience in working in this field. Spirituality has to do with the heart and pulse of being human. It is the soundless language which communicates our deepest emotions of love, anger, fear and belonging. It is the rhythm which gives form to many of our innermost thoughts and feelings. It is the space where we rest in the awareness of meaning beyond comprehension and experience beyond description. To offer spiritual care is to give opportunity, time and place to enable an individual to explore and to express who they are as a human individual. As we seek to embed a human rights-based approach to care and support through the new National Care Standards it is an important that we not only understand the role of formal religion and belief systems but wider understandings of spirituality. As a care sector and as carers we need continuously to explore what this may mean for the work we do and the services we offer. Spiritual care is care both at the margins and at the centre of the life experience. The way we commission care and support at the moment in Scotland leaves very little room for spiritual care. For spiritual care is a care that needs space, relationship, time and the chance to grow and nourish in a mutual dynamic of respect and understanding. Spiritual care happens in the ‘touching place’ between the carer and the supported person. It cannot be pressured into allocated seconds in a task-oriented approach. So when, I wonder, will our commissioners prioritise spiritual care? For if we are truly commissioning to the new National Care Standards then there has to be space to be spiritual in our care giving and there has to be funding to enable that space and time to happen. I hope you will read the Care Cameo, and I have no doubt it will raise as many questions as it will seek to offer answers, but I hope you will find it, as I have, a thoroughly interesting and thought-provoking piece of work which is all about putting the individual and their holistic needs at the heart of person-led care and support. Dr Donald Macaskill

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Care Home Week 18: Let’s get creative – guest blog by Edith Macintosh

Blog: Let’s get creative and celebrate Care Home Week 2018

By Edith Macintosh, Head of Improvement Support

As we celebrate Human Rights day as part of Care Home Week 2018, we're pleased to share this blog from Edith which talks about the importance of residents' right to creative opportunities and the resources available to support this.

We’re delighted to be joining in the celebrations for Care Home Week 2018. It is a great opportunity to raise awareness of Scotland's care homes, the people who live and work in them, their role in local communities and the opportunities care homes offer to enhance the lives and wellbeing of a wide range of people.

The Care Inspectorate works closely with care homes, not only because we are a scrutiny body but also because we are an improvement body. In fact, we have a formal responsibility for furthering improvements in the quality of care to help ensure people’s experiences of care are the best they can be. Our improvement work goes hand in hand with our scrutiny role. Our inspections are increasingly focused on improving the experiences and outcomes for people, not just compliance against procedures and older standards.

Right now in care homes across Scotland we are involved in so many innovative projects that help to give people the opportunity to live life to the full and as they would choose in order to flourish and live it well. These include our Care About Physical Activity (CAPA) improvement programme commissioned by the Scottish Government to help older people in care to move more often, collaborative work to reduce pressure ulcers in care homes and our improvement resources Spotlight on Dementia and Spotlight on Bowel and Bladder, to name but a few.

Arts in Care is another really important resource that helps to enhance the quality of life and health of people as they get older by promoting the arts and creative engagement in care homes.

We are all creative, whether we think it or not – everything we do in life has some element of creativity about it. We all have different creative abilities but, as work on this resource revealed, no matter what age or stage in life we are at, being creative can bring meaning, purpose and fulfilment to people and help them to live well.

Arts in Care was launched by the Care Inspectorate, in partnership with Luminate and Creative Scotland, back in 2016. Since then, it has been wonderful to see the growth of these expressive arts activities in care homes. We are increasingly seeing the evidence of how participating in the arts and creativity can have a transformative effect on a person’s physical, mental, emotional and social wellbeing.

The pack helps care staff to provide opportunities for people experiencing care to enjoy a good quality arts experience in the care setting or with the local community.  It also encourages care services to link with professional artists. Examples include using technology such as iPads to make music, storytelling and poetry workshops, singing and dance projects and visual art activities.

Greta, a lady living in a care home who was involved in developing the pack, spoke about how she had used her hands to be creative all her life and still loved it, she was also one of the people who helped to write a lovely poem called Bird Watching, which she recited at the official launch.  Some people spoke about how the creative arts helped them to manage some of the symptoms of their ill health and others said it meant they connected more with people and places because of it.

Clearly creativity is a powerful tool to help us to pursue wellness and remain resilient in life and in many cases restore joy that perhaps has been lost or is not often seen.

  • If you would like to find more information and resources from the Care Inspectorate on improving care for people visit The Hub website.
  • For more information about the CAPA programme and to find the latest news, case studies and resources visit the CAPA website.

The Care Inspectorate’s Improvement Strategy 2017-2019 is published on our website.

Edith Macintosh

@EAMacahp

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Care Home Week 18: Human rights resources

Today is the second day of Care Home Week, and is the day where we will be highlighting the important role that human rights play in care homes across Scotland.

In many ways, Scotland is leading the way in terms of human rights in social care. Not least given the introduction of the new Health & Social Care Standards: My Support, My Life in April 2018. These Health and Social Care Standards set out what we should expect when accessing health, social care or social work services in Scotland. They seek to provide better outcomes for everyone; to ensure that individuals are treated with respect and dignity, and that the basic human rights we are all entitled to are upheld.

The Standards are underpinned by five principles; dignity and respect, compassion, being included, responsive care and support and wellbeing.

The Standards are based on five headline outcomes:

• I experience high quality care and support that is right for me.

• I am fully involved in all decisions about my care and support.

• I have confidence in the people who support and care for me.

• I have confidence in the organisation providing my care and support.

• I experience a high quality environment if the organisation provides the premises.

Care home services for adults are the first services to be inspected against these new Standards.

Scottish Care has also done a lot of work around human rights in the last year, including the publication of a range of Care Cameos:

 

Human Rights & Social Care is written by Judith Robertson, Chair of the Scottish Human Rights Commission, and is based on the speech she delivered at Scottish Care's inaugural evening lecture.

Human Rights & Dementia is authored by Anna Buchanan. Director of the People Affected by Dementia Programme of the Life Changes Trust and considers how human rights law can be practically applied to improve the lives and support of those living with dementia and their families.  Scottish Care has been working closely with Anna and her team and we are looking forward to announcing some exciting news around human rights, dementia and care homes in the coming weeks. 

Let's Talk about... Sexuality features contributions from a range of experts in the fields of sexual health, dementia and human rights to examine how we ensure that sexuality is recognised as a fundamental right and component of someone's identity, regardless of age, diagnosis or care circumstances.

It is essential that we keep the conversation around human rights going and Scottish Care remains committed to celebrating, promoting and upholding human rights during Care Home Week and far beyond it.  

Do you have a resource to share, a story to tell or a question to ask around human rights and care homes?  Get in touch this week!

#carehomeweek

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Statement on Accounts Commission Annual Report on Local Government.

Scottish Care has consistently highlighted the growing crisis facing social care across Scotland because of chronic underfunding. We are therefore not surprised but nevertheless disappointed to read the latest Annual Report from the Audit Commission on the performance of local government in Scotland.

Most social care in Scotland is funded by local authorities and voluntary and independent providers deliver most of the care and support which is needed. The fact that there has been a substantial reduction in funding for local authorities has immediate consequence for some of our older citizens.

Scottish Care members seek to deliver high quality, rights-based care and support to enable people to live as full a life as possible in both a homely setting and in their own home. This is becoming increasingly impossible to achieve because of the current financial restrictions.

The Accounts Commission report indicates that local authority budgets have seen a real-terms cut of 9.6% over the last eight years. Their warnings that Scotland’s aging population and demographic changes are increasing the strain on services is something which social care providers know every day to be happening already.

We agree with the Accounts Commission that there are many factors impacting on local government and their ability to adequately fund social care services, not least the concerns around the uncertainty which Brexit is causing.

But alongside the reductions in public spending we are witnessing a sharp rise in demand for social care, coupled with the presumption that families can bear more and more of the burden. If we are going to preserve an already fragile system then we need to think seriously about how we are going to fund care into the future.

The Accounts Commission has warned that without changes that some councils could be spending 80% of their budgets on education and social work alone by 2025-26.

Scottish Care CEO, Dr Donald Macaskill commented:

“Every week we seem to have yet another report highlighting the critical state of our social care system in Scotland. Yet no one seems to be listening or taking any action.

Four months ago in the Scottish Parliament I called for substantial investment into social care of several £100 millions and this was met as if I was asking for the impossible. What we got in the Budget was a £66million increase to partly fund an extensive range of commitments.

We have to stop using social care as a political football and we have to start getting real. Because the reality is that more and more of our vulnerable citizens are not getting the care they deserve. The reality is that hundreds of people are leaving jobs in social care every month because they don’t feel valued and suitably rewarded. The reality is that we are trying to care for more people on less resources.

I want to stop reading reports which describe a real crisis in care and start to see intentions and investment which speak of a society which wants to care, protect and support the most vulnerable. For that to happen we need urgent political action rather than empty rhetoric. We need cross political party working rather than factionalism. It is easy to find someone to blame – it is much harder to work together to address a crisis. ”

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Latest Blog from our CEO: Is choice a human right?

Is choice a human right?

I want to reflect on two remarks within speeches I heard yesterday to celebrate World Social Work Day and the 50th anniversary of the Social Work Scotland Act. They both had to do with choice.

The first speech was making a comparison between different approaches and philosophies around social care and social work, evidencing the change from the spirit of the 1968 Kilbrandon Report which assumed that social work would be delivered by local authorities, much in the vein as some politicians have recently articulated a desire to return to. But then with the passage of the 1970s and 1980s the speaker commented that consumerism and choice within a mixed economy of care had replaced what had happened previously.

The second remark was within an inspiring speech by a young man, Thomas Timlin, who told his own personal story from living in a neglectful environment, being taken into care, experiencing abuse at the hands of foster parents, through the separation from siblings and his natural mother, being told at 16 that the State had fulfilled its duties of care, to enduring periods of homelessness and eventually becoming a children and families social worker. He commented that no-one had asked his views at any time, no-one had given him choice, had asked him what he wanted at any stage whether during fostering or adoption. The lack of choice had denied him a voice.

Two very different comments about choice but they are at the centre of the current debate about social care in Scotland. They are for me at the heart of what a human rights based, person led approach to care and support is all about.

Choice is after all at the core of our primary social care legislation in Scotland. The Self-directed Support (SDS) Act states in its Principles that an individual shall be enabled to have choice whether that be in an outcomes assessment or in support planning or indeed in the delivery of their care and support. They shall have a choice of four options over which to decide how their personal indicative budget should be spent. They shall have a choice on which provider of social care they want and is best fit to meet their own individual needs. There is also a duty upon a local authority to promote such diversity within the ‘market’ and ‘local community’ to enabling a real exercising of choice. After all presenting a person with one provider (statutory or not) as a take it or leave it – is not choice its instruction.

The SDS Act is a true democratisation of control, consent, participation and empowerment. Choice is part of the DNA of social care legislation in Scotland. Our new National Health and Care Standards go even further and articulate this human rights emphasis and root good care and support within the principles of autonomy, control and choice.

So, is choice a right? Is choice just another term for consumerism and therefore should it be limited and curtailed? Is there anything wrong with the consumer (the citizen) exercising control rather than being told what to do or having their options limited by the State? Is choice a human right?

These are all important and critical questions because they are likely to shape debate within the social care sector in the months and years to come.

For me, personally, choice is an alienable right. My perspective is influenced by being a member of the Same As You? Implementation Group nearly two decades ago. This was a key and ground-breaking strategic Scottish Executive policy which stated that someone with a learning disability was deserving of the same rights, dignity, treatment and citizenship as any other person in Scotland. I remember one person with a learning disability speaking at a meeting and summing up what it meant to have choice. She said:

“It isn’t just that I should have the right to choose what to eat, to choose what I should wear, to choose who I spend my time with, to choose where I live as far as I can; it is fundamentally that I should have the right to choose who comes into my home, who attends to my personal needs, who supports me to fulfil my life. It is my right to choose who sees me naked.”

Choice for countless thousands who have been denied control and autonomy means absolutely everything. It is the vibrant spirit of freedom that gives purpose to activity and underpins individual contribution.

So be very careful of those who wish to undermine the choice that has been achieved for citizens in Scotland, whether they have a disability, live with a mental health condition, or live their lives in a nursing or residential care home.

Choice is fundamental and that choice critically includes the right to decide what organisation provides care and support to me should I require it. Our politicians need to tread warily on any of the human rights citizens have struggled for, rights for social care choice which have been achieved over the last two decades.

For many the freedom to exercise choice is about the ability to be fully a person. Choice has no sell-by date; choice is not an option, it is intrinsic to being an autonomous human being. Choice is a human right.

Dr Donald Macaskill
@DrDMacaskill