‘Inclusive technology’ the new blog from Scottish Care CEO Dr Donald Macaskill

Inclusive technology

 

Every so often a report comes across my desk – admittedly not often – that is worthy of more than a single read – one of these was published last week – it is the report from the team behind the Technology Enabled Care work in Scottish Government. See http://www.gov.scot/Publications/2016/10/3839

 

We live increasingly in an age where technology assist and enables our daily living and can be a positive contributor to our health and well-being. At a very basic level it is clear from what the report indicates that many of us use technology to self-diagnose, so for instance:

 

  • 1 in 4 UK adults currently self-diagnose;
  • Internet is first port of call for health information for adults under 65;
  • 75% of the UK population goes online for health information;
  • UK second in the world behind the US for use of online self-diagnosis.

The report highlights the valuable project work underway including the use of video conferencing in care homes to support GP and Allied Health intervention. It underpins its focus by identifying five principles which should lie at the centre of all activity. These are:

 

  • Citizen-centred: work with citizens, users and patients to co-design and develop solutions which support the management and delivery of their own health and wellbeing, with a particular focus on addressing health inequalities;
  • Flexible: facilitate flexible solutions which expand choice, control, coverage and accessibility;
  • Familiar: build on existing and increasingly familiar technologies and favour the adoption of simple, low cost approaches which can be tailored to the individual, utilising users own technologies where and when practical to do so;
  • Facilitative: Support service redesign to integrate new ways of working into mainstream service provision and pathways;
  • Innovative: secure continued investment in innovation to ensure a pipeline of ‘next generation’ solutions for the benefit of our citizens and our economy,

 

It is fundamentally important but this work has to recognise the issue of age related use and comfort with technology. The sad reality is that for every one ‘silver surfer’ there are another 9 left on the beach!

 

This has been highlighted in the Scottish Household Survey, published last month which shows that older people face continuing barriers in their ability to participate in the technological world.

 

For example, the survey reveals that older people are more likely to be sidelined by the digital revolution.

 

  • Although 82% of adults regularly use the internet, this rate substantially reduces with age (only 69% of those aged 60–74 do, and this drops to 30% among the 75+ age group).
  • Older people who do use the internet use it less often, are less likely to use sites which request personal or financial information (such as for online banking and shopping), and are less likely to take recommended security measures such as using unpredictable passwords and changing them frequently.
  • They are also less likely to use digitally-enabled devices such as tablets and smartphones (88% of 16–34-year-olds use their smartphones to access the internet, but only 36% of those aged 65–74 and 19% of those aged 75+ do).

 

These statistics become even more challenging as public services are moved online.  This will be something the new Social Security system will hopefully take on board and appreciate. In addition as we continue to develop exciting new technology that enables information about individuals to be passed from one professional to another issues of confidentiality and privacy will come more sharply into focus. Equally the importance of a workforce being skilled and equipped to use smart technology in the workplace to assist and promote greater control and choice by those who use services and supports will increasingly demand a recognition from commissioners and purchasers of these services that technological innovation requires investment and resource.

 

But we must be careful of making sweeping assumptions and generalisations. The use of technology in care demands person centred approaches to technology and I am not wholly convinced we are there quite yet. The work of academics like Prof Rebecca Eynon from Oxford who has highlighted the issue of digital poverty and the affects that has on a person’s sense of identity and wellness is an important contributor to this debate. Technology even technology in care is not neutral.

 

Technology is a massively positive potential innovator in care but we cannot ignore the reality of digital poverty, the psychological impacts of using technology and the effects on the human environment. If we do the irony will be that technology designed to enable inclusion will result in exclusion on the grounds of age.

 

Dr Donald Macaskill

CEO of Scottish Care

New blog from Scottish Care Membership Support Manager Swaran Rakhra

Swaran’s Blog October 16

 

This is a very challenging period for our sector within social care, with issues regarding funding and workforce shortages as major concerns. We have highlighted to our strategic partners the fact that we have a considerable vacancy rate for nurses employed within our sector and are looking with our partners at trying to address this issue in the short, medium and long term. There is no easy answer!

 

This made me think about my nursing career and the reasons why I commenced my nurse training many years ago in 1978. In those days I was young, fit, looked like Jesus with long hair, dressed in cheesecloth shirts and I pretended I was from the hippy generation whilst the punk scene and drain pipes were the “in thing”!!

 

In those days I wore my hair in a bun, with two Kirby grips on either side to pin my hair up! I think I got away with this as folk thought I was a Sikh (my background) although a practicing Christian, and in those days I was called Nurse Singh!  (Nursing!!!!) OK looking at me now I can imagine it’s hard to believe, as we all change as we get older, but I’ve got the photos as proof, honest!!

I felt drawn to a nursing career due to the compassion I felt for others and wished to ensure that I was someone that could make a difference. It is a privilege and honour to be able to look after someone who is unwell, who trusts me to do and say the right thing!

So often I heard folk saying “I could never do that”, however I believe that each one of us has the potential of showing compassion and care towards others in society, at various levels!

 

Most of my nursing career has been spent working with older persons in a variety of settings, and I truly believe that the area of “geriatrics” as it was in the old days, is an area of care which has been maligned, forgotten about and devalued by society. Poor funding, complex and challenging work undertaken within social care settings such as care homes and care at home services, needs to be recognised. It requires being valued, attracting proper funding, drawing nurses and carers as a career, and properly rewarded for the work they undertake!

 

I was recently encouraged to hear about my niece Jen who qualified as a nurse earlier on this year. After a period within academia she decided to take some time out and work within Erskine hospital as a care worker, and the NHS bank as an auxiliary nurse. There were several nurses within her family and with some encouragement she decided to commence her nurse training. She always said that she would return to Erskine, as she believed that that was where her heart lay, working with older clients!

When she completed her training it came as no surprise to me that she decided to work as a nurse within a busy surgical unit to gain further experience as part of her nursing career!

I was disappointed within myself, as I thought yet again another potential nurse was lost from our sector to the NHS, as this has happened on numerous occasions, hence the vacancies within our care homes!

I am conscious that Scottish Care are very concerned about this and are working with providers, strategic partners and the Scottish Government to look at the whole area of nursing, and ask questions about how to attract nurses to work within our sector. Working within a care home can be as challenging if not more so than working within a hospital setting. You still have to deal with the complexities of old age such as dementia and palliative care,  and the various infirmities that that brings; working within a pressured, highly regulated environment, perhaps being the only nurse on shift, and also having management responsibilities!! Supernurse comes to mind!!

 

Well, my story has not finished,. When I was offered the post within Scottish Care, I was excited, as I was coming back to my first love, a position related to nursing and care of the older person (by and large). I am still involved with care, utilising my experience and nursing, my focus being within the social care sector within Scotland. My role is to support the various members and their services, ensure they provide quality care and are fully informed about what is happening within our sector.

 

Jen’s story is also not finished either! She decided that after enjoying her surgical staffing experience, that she missed working with older folk, and is now working within Erskine as a Registered Nurse within one of their older persons units!  Well she was true to her calling of returning to her “auld folk” and I applaud her for bucking the trend and deciding that working within social care is where her heart lies!

The future for her, who knows!!  Manager, Matron…….Chief Nursing Officer for Scotland, who knows!!!

Swaran

‘New models; old principles’ – new blog from Scottish Care CEO Dr Donald Macaskill

New models; old principles.

 

One of the most common phrases heard in discussions on the future of older people’s care and support is ‘new models of care.’

 

Behind these discussions and the desire for change and reform, is the presumption that the present way of delivering services and supports needs to change. Increased levels of dependency, an emphasis on personal control and choice, a focus on maintaining independence and advancing self-treatment and rehabilitation – all combine to encourage change. In addition pressures of demography, workforce and austerity have come together to create an environment clamoring for doing things differently.

 

But what lies behind the language and conversations? What are these oft mentioned ‘new models of care and support’? What will older people’s services and supports look like in the future? What do people want now and tomorrow?

 

Scottish Care is hosting a workshop where providers and other stakeholders are invited not to come and hear from ‘experts’ but to share with one another what is happening currently in Scotland and also to explore together possible future developments and ‘new models of care.’

 

First and foremost, however, what will be important in our discussions is the identification of what are the key characteristics or principles, which should lie at the heart of any ‘new’ models. There is always a danger that the metaphorical baby is disposed alongside the bathwater in our search for the new and the innovative.

 

So what is it that should lie at the heart of all services and supports, whether already in existence or still to be imagined?

 

Part of my response to that question is influenced by the work of John and Connie Lyle O’Brien. In 1987 the O’Briens embarked on a piece of research in Seattle on what makes a good quality of life.

 

Their Framework for Accomplishment proposed five areas which, over thirty years later, have become widely agreed to be important in shaping everyone’s quality of life. The Framework argues that the task of human services and support systems is to support people to fulfill their needs in these five areas. Their model has deeply influenced the development of learning disability services including its use as a tool to assess and judge whether services are working towards or against these five ‘service accomplishments’.  The O’Briens argued that services should be judged by the extent to which, as a result of their input people are:

 

  • Sharing ordinary places
  • Making Choices
  • Developing abilities
  • Being treated with respect and having a valued social role
  • Growing in relationships

 

 

So when we re-design older people services, I think – as a starter – we could do worse that ask ourselves the O’Briens’ questions.

 

Community presence – are the models of care home we are seeking to develop ones which will enable the inclusion and participation of individual residents at the heart of their communities or do they rather serve, by default or design, to cut off, withdraw, separate by location and thus exclude? How do they serve to increase the presence of a person in local community life?

 

Community participation – are the models of care at home which we hope to develop ones which foster and embed the ability of individuals to expand and deepen personal relationships? Do they act against loneliness, rejection and marginalisation or do they rather subtly confirm these?

 

Encouraging valued social roles – do our supports enhance the status and role of those who use them, recognising their continued and intrinsic membership of local community, family and society, affirming their contribution and individual capacity?

 

Promoting choice – is the ability of the individual to exercise informed and meaningful choice at the heart of what we are developing? Is control with the individual or the system, with the person or the professional?

 

Supporting contribution – are we fully developing the capacity and contribution of those who use supports or are they passive recipients of service with little ability to influence or change, to be valued as contributors and co-designers in their care?

 

I might wish to add some other ‘marks’ or characteristics of what today constitutes the heart of any new models – respect for capacity, emphasis on human dignity, the articulation of human rights, a stress on personalisation and individuality.
Whatever happens in the reform of social care in the next few months and years in Scotland, whatever new models of care and support are designed and developed, there must be a set of underpinning principles which guide that discovery and design, or we risk being reactive to passing fads and responsive to fiscal necessities. And that’s a conversation that involves us all.

 

We will be launching a new section of our website at Scottish Care to explore new models and supports, including the principles which should lie behind them. Join us in that conversation.
Dr Donald Macaskill

New blog from Scottish Care Local Integration Lead Margaret McGowan

I have been in this role for over 3 years now and had taken up the post hoping to help make a difference.  If you would have asked me last year if I had achieved this I would have probably said No! However, ask me now and I know that I have made a difference to some services.  I have worked with providers in developing their services, provided them with tools and the experience for them to take forward and this has shown in past and now current Care Inspectorate grades.  I must say that it was not all my own work by any means, but it gives me a sense of satisfaction knowing that I had an input.

I am excited to be working with the My Home Life Team in Borders on a new cohort starting early next year. We already have a cohort running currently which has had some excellent feedback from care home managers. The new cohort will include working with NES and enhancing care homes as a placement location for students. In addition we will be including a Community Development Strand and the focus will be on Personal Outcomes, with a particular focus in this cohort on working with care homes as learning organisations thus strengthening services in the Borders. This is all currently in draft format but Watch this Space !

Falkirk sees a Creative Facilitation process coming through currently in conjunction with the My Day My Way SDS project which looks at SDS for Older People (including people with Dementia). The project is all about how we move forward with a new Model of Care and day supports using a creative approach for developing how we want services to look like in future. This could be very exciting and includes a wide range of partners from the Local Authority, the NHS, the Independent Sector, Third and Voluntary Sectors, service users and their carers, etc.

Exciting times for all going forward and I am so enthused to see so many examples of good practice and innovation around the country.

 

Margaret McGowan

Local Integration Lead for Borders / Falkirk

[email protected]

What price dignity?

What price dignity?

 

The flagship policy of Health and Social Care Integration which was established, from April 1, created Integrated Joint Boards bringing health and social care together for many services.

 

Like many I saw the logic of closer working, pooling resources, placing the patient or citizen at the heart of clinical and social care. With others I heard the words ‘partnership’, ‘collaboration’ and that frequently used and rarely understood concept called ‘co-production’.

 

So how has it been on the ground?

It’s early days but the signs have not been positive in many areas if you are a care at home or housing support provider.

 

The first real test came in the form of dispersing £125m Government funds to frontline care staff to ensure they were paid the Scottish Living Wage.

This has the potential of creating real change in a sector which employs thousands of workers who daily deliver care and support to some of our most vulnerable citizens. But over the years public authorities have sought to buy quality care from providers, whether charitable or private, by paying lower and lower rates.

 

Such a process cannot continue if we are to attract and hold onto staff who are required to be increasingly skilled, whose work is demanding and emotionally draining.

 

But even if we move into calmer waters the recent experience of negotiation has highlighted a deeper issue. Namely, the relative priority given to older people’s care and support.

Successive governments have trumpeted Free Personal Care and this has been a laudable policy. But one cannot dine out on a single initiative forever.

 

Year on year as an ageing population increases and lives for longer we are spending per capita less on older people’s care and support. By 2022 the number of over 75s will increase to 530,000 in 2022, reaching 780,000 in 2037 – an increase of 86 per cent in just a quarter of a century –  360,000 more than today.

 

Hard decisions must be made sooner rather than later and these in large part will determine how much we truly value older people in modern day Scotland.

The cake is getting smaller and smaller – but have we had a proper debate about the equity of cutting that cake? I think not.

 

This goes beyond party politics to the heart of who we are as a society.

It necessitates the real hard collective work of determining the true cost of care now and for the next decades. It is more than negotiating a decent set of terms and conditions for workers. It is about negotiating the price of dignity and the value of old age.

 

Dr Donald Macaskill

This article first appeared in The Times on 27th September 2016

The time has come…

The time has come…

 

Many of you who read my blogs will be by now familiar with one of my contentions that there is in existence a systemic age discrimination, which results in unfair and unequal treatment of older people in modern society. This 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.

 

I was therefore delighted that after a robust and serious examination that the UN Independent Expert Rosa Kornfeld-Matte presented a comprehensive report on the rights of older people to the UN Human Rights Council in Geneva on 15th September. Her report states that current international provisions are not sufficient to fully protect older people’s rights, and calls on states to consider a new convention. She also concluded that, despite some good or promising practices, the implementation of existing law does not adequately ensure older people’s rights are upheld either.

 

As one delegate stated:

 

“A new convention would provide comprehensive protection of older people’s rights in law, a system through which to hold governments to account and a powerful advocacy tool for older people to claim their rights,”

“It would help bring about a shift away from the stigmatising and dehumanising ageist attitudes that currently dominate the way older people are seen and treated, moving instead towards recognition of older people as active rights holders.”

 

The creation of a new convention for older people would help embed some existing good practice and ensure, especially in the area of social care, equal treatment for older citizens, not least by demanding adequate financial provision for that group of the population.

 

I am delighted that Scottish Care has over the last year continued our work of putting the human rights of older people in Scotland at the centre of our care and support. We have launched two conventions and have a dedicated human rights project. See https://www.scottishcare.org/human-rights/

 

The time has come for us in Scotland to join the campaign to create a framework of rights which recognises the distinctive discriminatory experience, both at societal and personal levels, which all too many older citizens endure and experience.

 

This coming Saturday the 1st October is the UN International Day of Older Persons and the theme is “Take a stand against ageism”. I hope you can spread the message and join any activities that might be happening near you.  http://www.un.org/en/events/olderpersonsday/index.shtml

 

 

Dr Donald Macaskill  

Scottish Care

Hopefully Something…

Hopefully Something…

“What are you going to do with that?” The question my aunt asked me when I told her I was going to do a Master’s degree in Human Rights. “I don’t know,” I told her. “Hopefully, something.”

Something that will make a difference. I guess that’s what we all want to do really, just in our own, individual way.

My first experience of the difference a human rights based approach can make came after university. I moved to India to work for a Human Rights Charity called Shanti Bhavan or in English, Haven of Peace. The charity, the only of its kind in the world, supports children from the Dalit or ‘untouchable’ caste to fulfil their potential through human rights. These children, of which there are over 300 million, are considered to be worthless, unable to become anyone or anything or to contribute to society in any other way than sweeping the streets before sunrise.

Shanti Bhavan is a residential school which invites these children in and grants them their basic human rights from day one; the right to non-discrimination, the right to be treated with dignity and respect, the right to security and the right to education. The school provides, board, food, clothing, medical care and education from nursery through to university entrance exams. The charity started in 1997 and in 2010 saw its first batch of university graduates all of which secured jobs, lifting their families out of poverty, their villages in some cases and breaking the cycle of ‘caste.’ That’s the power of human rights, if we strive to treat everyone equally, with respect and dignity then we give everyone the opportunity to fulfil their potential.

In Scotland, we don’t have a caste system to contend with but we do have a system, a way of doing things, a way of seeing things which means that for some, human rights are not always realised. Older people are amongst these vulnerable groups. Sadly, Action on Elder Abuse estimated recently that 500,000 older people are subject to abuse at any one time. Our work at Scottish Care seeks to address this, to shape a care sector in which older people are respected, independent and equal members of society.

Over the past year, we’ve been working with older people in residential care and those receiving care at home or housing support to develop our Human Rights Conventions. We asked them, “What rights need to be protected to allow you to achieve your full potential?” They told us that they needed the right to privacy, to family life, to security, to freedom from inhumane or degrading treatment, to choice and to non-discrimination.

And, like Shanti Bhavan, in Scotland, there exists organisations and individuals who strive on a daily basis to promote and protect these rights. Carers who stay an extra hour after their shift to ensure that Jane feels secure and comfortable, who listen for hours on end to show Robert that he’s respected and important, who close the curtains to provide privacy. Nurses who take the time to explain things calmly and compassionately, who hold someone’s hand through a hard time, who ask, “are you ok?” to ensure dignity.

I guess what I’m trying to say is that the human rights we all entitled to and that we all need to flourish don’t change depending on where you live, what ‘caste’ you come from or what age you are. They are about how we treat people, how we make them feel and how we support them to achieve their potential as human beings. And, everywhere, there exists people who make these rights real. This blog is dedicated to them.

And, if anyone reading this needs a bit of motivation or positivity to get through today, take a look at this video of the children of Shanti Bhavan, I miss them an incredible amount.

[email protected]

 

 

Don’t walk away – a mental health challenge

Don’t walk away – a mental health challenge

 

One of the most interesting and yet challenging studies I have read recently was one published in the British Journal of Psychology last week. In an extensive European wide study researchers found many more elderly people than expected have or have experienced a mental disorder when evaluating them with a new, simpler screening technique. Indeed they discovered that nearly one-quarter of older people had a mental disorder in the previous year, and one-third had been treated for one in the previous year.

 

Traditionally it had been thought that the risk of mental disorders declined with age, but this new study suggests that is not true, raising concerns because of the greater effect depression, anxiety or substance dependence can have on health conditions for older people.

 

According to the researchers, older people struggle to remain attentive during traditional diagnostic tests and the questions may be too long or complicated, which makes their performance even worse. For the new study, researchers developed a new diagnostic method using a computer-based interview system with simplified questions and statements.

 

This research seems to underpin what I have been hearing and witnessing when I talk to staff who work in care homes, care at home and housing support services. The challenges facing services in Scotland are significant. It was therefore a positive measure to see proposals in the consultation on Scotland’s Ten Year Mental Health Strategy which have the potential to address the mental health challenges of our older citizens.

 

Scottish Care has made a response to the consultation. In it we highlight that many older people develop mental health challenges later in life, often when they are receiving care at home or care in residential settings.

 

We have come a long way in the last ten years with our work on dementia. However, there has always been a risk that the focus on dementia has taken our eye off other mental health and life enduring challenges faced by older Scots. I spoke recently to someone who had lived with chronic depression most of their adult life and had received good supports until that is they got to 65 years of age. Then almost overnight, he told me, it felt like the system was abandoning him and the supports he had been used to changed and disappeared.

 

“It was like standing at a window and seeing everything and everyone who had helped you live your life, especially in the down times, walk down the street and wave goodbye. I felt really alone.”

 

 

We have I believe to get much better at supporting people who have life enduring mental health challenges transition from adult to older people services. This will include properly resourcing the older people care sector to train and equip staff to deal with mental health issues and challenges and also to give greater priority to enable the development of new models of support which can cater for individual and particular mental health needs.

 

In addition, old age itself brings about a whole range of changes, many of which are positive and welcomed, but some are challenging and difficult. I do not believe, and the study quoted above highlights this, that we have sufficiently robust mechanisms in place for diagnosing and then supporting individuals who develop a whole range of conditions after the age of 65.

 

There is a real opportunity for Scottish Government, older people and providers to work together to improve the quality of mental health support. At times of vulnerability we need to give people the feeling and sense that people are there to support and guide, not that they are walking away from them.

 

Dr Donald Macaskill

18th September, 2016

 

Greetings from Argyll and Bute

Greetings from Argyll and Bute.  We wanted to let you know about an exciting project that took place in Oban this summer.

One of the care at home providers, Carer’s Direct, took part in a pilot for a placement for physiotherapy students from Glasgow Caledonia University.  The placement was referred to as a split placement – the students time was split between the physiotherapy department in Oban, Lorne and the Isles District General Hospital, the Community Healthcare Team and Carers Direct.  This was an ideal project for us to work on together, as it built on improved partner relationships which had developed in Argyll and Bute over the last few years.  These relationships were forged against the backdrop of RCOP (Reshaping Care for Older People) and a workforce development project facilitated by IRISS (Institute of Research and Innovation in Social Services) and supported through the role of the Local Integration Leads.

The aim of the placement was to promote awareness of the move to more people being cared for at home and the implications for healthcare professionals (specifically physiotherapists) of supporting people in their own home.

The project was supported by a steering group with representatives from each of the agencies involved – Carer’s Direct, NHS Highland, NES, Care Inspectorate, Scottish Care, Glasgow Caledonian University so that learning from the pilot could be written up and disseminated.

Thanks to a lot of goodwill and hard work from all of the agencies involved in supporting the students during the placement it was a real success. We also have to mention here that the sun shone on Oban for the duration of the placement!  We are hoping that having worked and seen Argyll in it’s best light this might help with recruitment and retention!  Some of the students evaluation has been filmed and will be widely available soon – look out for the link on the Scottish Care website.  There will also be a link to the written evaluation and this includes lessons learned as well as the notable successes.

Of particular interest to care at home providers, development officers and local integration leads will be the students comments about how little time care at home staff are allocated to complete complex care tasks.  For the students this was at odds with promoting independence.  Care staff reported back that it was very helpful to have access to the physiotherapy students and to learn from how they worked with people to promote well-being and independence.  The care at home manager observed that care staff have gained transferrable skills and insight from working with the students.  We also recognised that the project helped cement relationships across the sectors within the partnership, promoted a better rapport and understanding of each other’s perspective and fostered a stronger team approach to delivering care.

Glasgow Caledonian University are keen to extend split placements for students to other providers and other areas of Scotland as a result of the outcomes from the pilot.  So if you know of any providers who might be interested in hosting a placement please spread the word.

 

Anne Austin & Susan M. Spicer,

Argyll and Bute Local Integration Lead, Scottish Care (job-share)

Anne’s email:  [email protected]   or, mobile: 07460898897

Susan’s email: [email protected] or, mobile:07771610728

Let’s start talking…

Let’s start talking…

 

For both personal and professional reasons my mind these last few weeks has been much occupied by thoughts of death and dying.

Now before you scroll away stay with me for a while …

It’s always struck me as a strange indictment of our modern living how uncomfortable we are as a society with talk about death. If sex, politics and taxes were the Victorian taboo then death has surely been added to the modern dining table no go areas of conversation. Why is that I wonder? Is it because death has to some extent become a stranger, an occasional visitor we keep standing at the doorstep of our experience?

A hundred years ago, certainly in a Scottish context, the immediacy of death was intimate. Most people died at home, in their own bed, own street and own community. Scottish traditions such as the ‘kisting’ where the remains of the deceased remained in the family home until the funeral and where ordinary living continued around about, made death feel a more natural stage. The average Scot at that time experienced the death of a close family member at an early age but today for many folks their first encounter with bereavement is often in their late twenties.

In December 2015 the Strategic Framework for Action on Palliative and End of Life Care 2016-2021 was published by the Scottish Government. It has a set of ten commitments of which the sixth states:

‘Support greater public and personal discussion of bereavement, death, dying and care at the end of life.’

Later the Strategy describes the danger of the over medicalisation of death –

‘Social and cultural change has resulted in a ‘death-denying culture’ and the medicalisation of death. An entire generation has come to expect that all aspects of dying will be taken care of by professionals and institutions, potentially undermining personal and community resilience in coping with death, dying and loss as part of the ‘cycle of life’.

The Strategy is a real opportunity for us to change the way in which people are supported at the end of life and also to change and challenge popular attitudes to dying and bereavement. In my work I speak to many frontline staff in care at home, housing support services and care homes who day in and day out are engaged in support for individuals who are at the end of their life. Their work is irreplaceable and their contribution to ensuring that people spend their last few days in dignity, with appropriate support and the management of pain and distress is critical.

At times, however, the role of social care staff whether in a nursing home or in the community, is not always appreciated or valued. Yet this is perhaps the most important work any of us can undertake on behalf of another. It is work which has a value beyond calculation but it is also hard, emotionally draining and challenging.

 

Over the next few weeks and months Scottish Care staff and members will be involved with other health and social care colleagues in working to try to make sure that all staff, whatever their role, feel a sense of support and training to enable them to do this work as best as they can.

One of the first challenges in that is for us all to start talking about death, being open to discussions about mortality, and to help one another to become communities where grieving and bereavement are at the heart of who we are and what we do. There is a terrible conspiracy of silence around death and that silence has to end for the sake of us all.

If we do not as a society and community start considering death and what it means for us all then we are left with a lot of people struggling to cope and all the negative health impacts that result. One of my favourite poems around grief is Nobody ever told me. It highlights just how hard it is for people to talk and be open in this area but equally how the work of the new Strategy is essential in getting us all to share, talk, reflect and be comfortable with mortality.

 

Nobody ever told me.

 

Nobody ever told me

it would be this hard;

that I’d wake up in the morning

and think that you were there

lying beside me in our bed;

that I’d walk down the street

and recognise your shadow

following me in the sun;

that I’d listen to the radio

and hear your voice

inviting me to sing;

that I’d sit in the park

and watch you go by

in a group of strangers.

 

Nobody ever told me

it would be this hard;

that I’d wonder why I should

get up in the morning;

that I’d think making plans

was a children’s playground game;

that I’d rage with anger, red and raw,

at your leaving;

that I’d wonder was it me

who did something

that made you go away.

 

Nobody ever told me

it would be this hard.

 

Why can’t someone tell me instead

how I can stop crying

and dam the tears from soaking my pillow?

How I can start again when all I want to do

is rest in our lost togetherness?

How I can ‘move on’ when I only want to settle

in the place of our memories?

 

And please someone tell me

when will this time come,

the time they all talk of

in easy careless cliche,

the time which they say

will heal all things

and help me to live again?
Donald Macaskill