Open our eyes and ears… Jean to all intents and purposes was a confident, articulate and outgoing individual. She put a good face to the world with a close group of friends whom she had known for years and who all still kept in touch with each other even if less frequently. Jean was in her late 80s and lived a quiet suburban life with her son and daughter-in-law. As her health declined over the years and particularly following a stroke she needed more and more support to manage the ordinariness of living. But she got there and often with a humour beyond her conviction and a positivity which was the object of much admiring comment. She went out as much as she could, attending a local lunch club for older people and was also consistent in her attendance at her local church. That was the Jean that the outside world saw. The real Jean was a woman whose life had been turned upside down since her son lost his job and came to stay with his mother, bringing along with him his wife who Jean had never really seen eye to eye with. After a brief honeymoon where everyone danced on the eggshells of shared living, being polite and sensitive to accommodating the rhythms and routines of others, things began to get first moody and then heated and angry. It started with small verbal barbs and putdowns and soon escalated into loud arguments and verbal challenges; open and subtle domination on the part of her son and snide, belittling asides from her daughter-in-law. Jean began to retreat into her own world, using silence as a weapon to create absence in her own home. She watched her words so much that she stopped conversing and just watched the television when she was at home. The domination reached a new level when her son, on the pretext that he thought Jean was developing dementia, persuaded her to allow him to be her Power of Attorney, and then took charge of her pension card. Jean was given pocket money whilst her son’s taste in fine wine developed literally at her expense. Jean is the victim of abuse and harm. She is hidden, in part by her own sense of shame and embarrassment, in part by the inability of people around her to think the unthinkable and to see the signs of abuse. Today (Sat 16thJune) is the United Nations World Elder Abuse Awareness Day – a day when we reflect on the harm which countless millions of older people experience across the world. Scotland has some fantastic legislation which protects and supports the victims of harm and abuse. But of course, legislation is not what ultimately safeguards individuals who for whatever reason might be vulnerable. What protects is a community which recognises the small signs that things might not be right. It is relatively easy to recognise the victims of physical harm, albeit that bruises and marks are often hidden. It is much harder to recognise the countless older women and men who are the victims of sexual abuse, psychological and financial harm or are the objects of hatred. But sadly they live in every community of Scotland. They live in homes with threadbare carpets and lace curtains, they live in streets of Georgian townhouses and Victorian tenements , behind quaint scenic village doors and in newly built housing estates. Abuse knows every village and town, every social standing and occupational group, every ethnic heritage and every sexual identity. Today look around you. Listen for the dropped remark and quiet word. Hear the fear in a trembling voice or a shed tear. Spot the furtive anxiety and desire to be invisible and small. Don’t dismiss your intuitive concerns but take a moment to think about whether you need to ask, to speak, to do. Jean and countless like her depend on our eyes, our voices and our actions. Thankfully in Jean’s case her home care worker spotted the signs and now Jean is free. Dr Donald Macaskill @DrDMacaskill
Caregivers across Edinburgh came together on Wednesday 12 June to celebrate Johns Campaign and highlight the work undertaken over the last year.
John’s Campaign was founded in November 2014 by writers Nicci Gerrard and Julia Jones and endorsed by the NHS in 2016. It was established in memory of Nicci’s father John Gerrard who had Alzheimer’s. After being hospitalised with leg ulcers, caregiver access was restricted which left John and his carers distressed and he sadly passed away while in hospital.
John’s Campaign recognises the important role of those family members who care for people who are living with dementia. Behind its simple statement of purpose lies the belief that carers should not just be allowed but should be welcomed, and that a collaboration between the person living with dementia and all connected with them is crucial to their health and their well-being.
Currently within Edinburgh Health and Social Care Partnership, 65 care homes (statutory, independent and voluntary) pan Edinburgh promote and support Johns Campaign.
The pledge made by all Edinburgh care homes states:
‘Care homes in Edinburgh welcome and support carers of people living with dementia, or other life limiting conditions. We understand that as a carer your knowledge and expertise can make a huge difference to how people become comfortable and contented within our care homes. If you wish we would encourage you to be involved in aspects of planning and delivering effective person centred care for the person as you know them best’.
One care home highlights a small but significant change in line with Johns Campaign:
‘We have had some excellent interactions with family members. One entire family moved in for the week leading up to a Residents death – we gave them a lounge ( which was conveniently next to their mothers room) and they stayed here with us using staff showers, being fed by the kitchen and spending very special time together. Another gentleman comes to see his wife and have his meals with her. Another visitor comes every Wednesday to have breakfast with his friend. Our door is never closed and visitors know they can come and see their loved one/ friends whenever they would like to.’
Scottish Care, as the representative body for independent sector social care services, supports and encourages the adoption of the Johns Campaign.
This carers’ week we want people to know that we will support and encourage them if they would like to be involved in providing care. The role and experience of families, friends, and carers have supporting and comforting people through any illness, but critically dementia, is absolutely invaluable.
Scottish Care’s 13th Annual Care at Home & Housing Support Conference, Exhibition and Awards took place on Friday 17th May 2019 at the Marriott Hotel in Glasgow.
Over 200 day delegates attended the conference including care providers, local authority, NHS, Scottish Government and regulatory colleagues. We also welcomed 30 sector suppliers and partners who created a vibrant exhibition space at the conference.
The title of this year’s conference was ‘Redressing the balance: the potential of home care” and was kindly sponsored by Quality Compliance systems.
The conference aimed to address the issues impacting on Scottish Care members and the wider care sector. Delegates heard challenging, inspiring and thought-provoking contributions relating to the following crucial topics:
- How do we shift the balance from time and task to a human rights-based approach to commissioning?
- How do we push towards fairer funding for providers and the workforce?
- How do we gain recognition for the important role of home care within an integrated context?
- How do we embrace technology without compromising on compassion?
- What learning can we revisit to really achieve positive change?
We are extremely grateful to all conference contributors and are delighted to be able to share slides from our esteemed speakers and insight session leaders.
If you would like any more information about the event or future Scottish Care Conferences, please email [email protected]
Resources launched at conference:
Launch of the Herbert Protocol in Edinburgh
The Herbert Protocol is an information gathering tool to assist the police to find a person living with dementia who has been reported missing as quickly as possible.
The Herbert Protocol was launched in Edinburgh on 4 June and we are encouraging people to find out more about the Herbert Protocol and pass the information on to anyone that it may be helpful for.
Edinburgh Health and Social Care Partnership, Police Scotland, Scottish Care and Alzheimer Scotland have been working in partnership to increase awareness and promote use of the Herbert Protocol in Edinburgh.
The Herbert Protocol is a nationally recognised scheme supported and endorsed by Police Scotland. The initiative was first developed by Norfolk Police. It is named after George Herbert, a war veteran of the Normandy landings, who lived with dementia. George Herbert died whilst ‘missing’, trying to find his childhood home.
Who is it for?
The Protocol can be used for anyone who has a dementia diagnosis and may be at risk of going missing. People living with dementia often have loss of short term memory but can easily recall memories from decades earlier. Sometimes those who are reported missing are attempting to make their way to a place of previous significance to them.
What is it and how does it work?
The Herbert Protocol is an information gathering tool that encourages carers and families to record vital information on a form. This can be handed to police in the event of someone going missing.
It helps police to quickly access important information, avoiding unnecessary delays in gathering information at a time of crisis. The form records vital information such as where the person grew up, favourite places, former or current hobbies, GP contact details, medication, daily routine, a picture of the person with consent to share this on social media should it be required.
Once complete, the form can be retained by carers, or placed within the home or care setting in a safe but prominent position, so the information is easily available to police when required.
The Herbert Protocol form can be found on the Police Scotland Edinburgh webpage along with other information
Please pass on information on the Herbert Protocol to anyone it may be of use to. This can include colleagues, friends and family affected by dementia in Edinburgh. The completed form can be stored electronically as well as in paper form, but it is important that the family and friends of the person with dementia are the ones who keep the form.
If you require a large quantity of printed forms or wish to arrange for someone to come a speak to staff about this initiative, please contact Rachel Howe on [email protected] to arrange. You can also send her any questions you may have.
The Scottish Social Services Council (SSSC) has launched a consultation about proposed changes to the way SSSC registered workers record and submit their post registration training and learning (PRTL).
The consultation is open until 21 July 2019 and is particularly looking for responses from SSSC registered workers and supervisors/managers.
To find out more about the consultation, click this link: http://ssscnews.uk.com/2019/05/27/prtlconsultation/
The Care Inspectorate have developed new care surveys for care homes for older people that link to the new quality framework for inspecting care homes for older people.
These new care surveys have a stronger emphasis on hearing about people’s experiences and outcomes.
These new surveys replace the old care standards questionnaires. They have fewer questions and include packs of sentiment and response cards to support people to express their views more easily and simply, if they need to.
The Care Inspectorate have also produced guidance on how services can support people to give their views using the new surveys and card packs. If you have already received the older style care standards questionnaire, please continue to use them.
You will receive the new surveys and card packs in much the same way you used to receive care standards questionnaires.
Click here to find out more, see the new materials and get guidance on how you can use them.
Luminate has been awarded funding by the Life Changes Trust and the Baring Foundation to set up a dementia inclusive choirs network for the whole of Scotland. Supported by partners Age Scotland, Scottish Care and Making Music, the nation-wide network aims to ensure that people living with dementia and their carers have the opportunity to sing in a choir in their local area.
We need your help to make sure that our plans for the new dementia inclusive choirs network meet the needs of choirs across Scotland, and the needs and wishes of people living with dementia and their carers.
We would therefore be most grateful if you could complete this short survey: https://www.surveymonkey.com/r/choirsnetwork
There is the option to provide a paper copy of the survey if this is preferred. You can request this by phoning the Luminate office on 0131 668 8066.
The closing date for the survey is Monday 17th June at midday.
To find out more about the Dementia Inclusive Choirs Network, visit: https://www.luminatescotland.org/dementia-inclusive-choirs-network
Are you interested in taking community action to improve people’s experiences of death, dying, loss and care?
Are you or do you want to get involved in practical work to build compassion in your own community?
The Truacanta Project is seeking expressions of interest now!
Find out more information and express your interest: www.goodlifedeathgrief.org.uk/content/thetruacantaproject
The Trucuanta Project is an exciting new initiative that will work with communities to develop projects around improving people’s experiences of deteriorating health, death, dying and bereavement. After an initial application process, up to four communities from across Scotland will receive dedicated community development advice and support for two years.
Expressions of interest are now being accepted until 15/06/19
A shortlisted number of interested communities will then be supported to put together a more detailed application to be part of the project
The Truacanta Project, Scottish Partnership for Palliative Care, CBC House, 24 Canning Street, Edinburgh EH3 8EG
Tel: 0131 272 2735
Our CEO Dr Donald Macaskill was pleased to take part in Scotland’s first Festival of Age which was held in Glasgow on Thursday 23rd May.
Before the event he wrote the following blog to challenge some of the stereotypes and negative attitudes which still exist around age. Madonna – The champion of age. Over the years the controversial singer Madonna has spoken about the flak that she had to take because of “using sexuality as part of my creativity” and with being labelled a “sexual provocateur” amongst the politest of critiques. She is now facing a new battle and in an interview in British Voguepublished on 10th May has argued that she is now fighting ageism in the music industry and that she is “being punished” for hitting 60. She told Voguemagazine: “People have always been trying to silence me for one reason or another, whether it’s that I’m not pretty enough, I don’t sing well enough, I’m not talented enough, I’m not married enough, and now it’s that I’m not young enough. All too many people will share Madonna’s angst about ageism and I for one look forward to her battling against it. Ageism is so endemic that it has become part and parcel of the wallpaper of our realities – so subtle, so pervasive that it is not even noticed; it is just accepted as a given, as a state of unalterable being. It’s almost the same position that racism was in the 1950s and early 1960s – so unconsciously accepted as a social norm in the UK that it went unnoticed – except by its victims. It is in the language we use, the stereotypes we accept, the rhetoric we hear. What do a ticking time bomb, a silver tsunami and a population apocalypse all have in common? No, they aren’t the latest plotline from an episode of Line of Dutybut rather they are phrases used to describe the fact that we are living longer. They are highly negative descriptions of a reality that most of us would or should want to celebrate – we are dying older and healthier than at any time in Scottish history. So why the negativity? Why is it that so much of our cultural and political discourse about old age paints such a dark and depressing picture of decline? Old age is something which should be valued, but alarmist attitudes fail to recognise the benefits and potential of older age and feed into the myth that getting old is about losing something rather than gaining something new and potentially positive. Old age is seen as a challenge rather than an opportunity. Everywhere you look there are negative stereotypes which perpetuate the myth that older people are incapable and dependent, have nothing to contribute but rather are a burden and a drain on society. We see this in many of the current debates about social care and health which count up the costs an ageing population results in but fail to recognise that over 90% of care delivered in this country comes from the hands of people who are themselves old thus saving the taxpayer countless millions. In Scotland I am sure we would like to believe that we treat all peoples as equal, regardless of colour, creed, disability, sexual orientation and we have indeed made great strides in addressing discrimination and hate. But have we made the same progress against negative stereotyping and discrimination which is based on age? I think not – why is it that a child in receipt of residential care will have nearly double the amount of public resource allocated to their care than an older person of 90 in a care home? Why is it that countless individuals talk about not even getting the chance of an interview if they are over 60 and are seeking employment? Why is it that at the age of 65 people who are accessing social care support move from being an adult onto being an ‘older person’ and in some areas such as mental health services they tell us they suddenly find the level of their support diminishes? Do we feel it is adequate that for thousands of older people seeking social care support that you can only now be eligible if your need is ‘critical’, that our social care services are critically under-funded? We need to take off the heather-tinted glasses and face up to the reality that Scotland is as ageist a nation as many others in the world but rather than just recognise this we need to act . Yes, the Scottish Government has just published a great summative strategy, but … Scotland has a real opportunity to do things much better. Embedding human rights at the heart of economic, social and political systems is a start. However, regardless of good policy intention and political priorities unless we address the pervasive cult of youth in our society, we will continue to acquiesce with ageist discrimination. So, with Madonna I will continue to fight against the ageist discrimination that fails to value contribution, for me that means fighting for Scotland to have an Older People’s Commissioner and for a Convention of the Rights of Age. What does it mean for you? How can we together create a country which is the best place in which to grow old and in which value and contribution is recognised regardless of chronology? In the words of Madonna:
“I have a dream But dreams are not for free We all need to change Or just repeat history.”
Dr Donald Macaskill CEO, Scottish Care