Its that time of the year when things start to decide to break down. I’ve been having quite a few problems with my household boiler – not ideal at any time and especially during a winter, however mild. In the process of several visits I have been having chats with the plumber and been looking online about how a boiler system works – now fear not I shall not be visiting a boiler near you anytime soon!

But it did get me thinking because the way in which a boiler works is quite fascinating. Basically when I want to heat the house, I switch on the boiler with an electric switch or timer which for many of us today is now wireless. ‘A valve opens, gas enters a sealed combustion chamber in the boiler through lots of small jets, and an electric ignition system sets them alight. The gas jets play onto a heat exchanger connected to a pipe carrying cold water. The heat exchanger takes the heat energy from the gas jets and heats the water to something like 60°C (140°F).’ – and clearly I needed help to work that out!

I am not going to become a heating engineer but what a household boiler is illustrative of is the way in which so much we take for granted in our living is in effect made up of a series of systems which relate to each other in order to achieve a particular outcome. As I heard someone say recently when I get into the car in the morning and turn the ignition I don’t think of the 30,000 plus individual parts and hundreds of systems which make it work – I think about whether the car is working or not and by extension whether I will get to my destination or not.

One of the problems with my boiler has been that the fault has been hard to detect – sound familiar? This has meant repairing or replacing different elements of the system in order for the whole to work. But that comes with a price and introduces a weakness to the whole system. Dealing with part of the problem, even replacing a part or changing it, affects the whole system often in subtle and undetectable ways. Yet that is how we have often gone about not just repairing a heating system but addressing the problems in human service systems. Traditional technical approaches have addressed problems in individual parts without necessarily considering the impact on the whole machine. This has been a problem with designing new systems as much as it has been with repairing broken ones, so Amory Lovins wrote: 

“Designing a window without the building, a light without the room, or a motor without the machine it drives works as badly as designing a pelican without the fish. Optimizing components in isolation tends to pessimize the whole system—and hence the bottom line. You can actually make a system less efficient while making each of its parts more efficient, simply by not properly linking up those components. If they’re not designed to work with one another, they’ll tend to work against one another.”

What we need is whole-system thinking which shows and maximises the connections between parts.

 I’ve been reflecting on what these insights might mean for a whole systems approach to health and social care in Scotland. Indeed there is a growing literature on these ideas.

 Just before Christmas the Scottish Government published its Health and Social Care Delivery Plan. In some senses there was not a great deal which was new in this work but it has helpfully brought together a whole range of policy initiatives and Governmental strategies and priorities.  Indeed if you read between the lines you can get a sense of a system which is lurching towards a whole system approach if not by design then by inevitability.

 The health and social care system is a multiplicity of systems which if dealt with in isolation might benefit the part but will not succeed in changing and fostering positive outcomes which enable the whole system to work. 

Perhaps this has been most apparent in some of the media over the last few weeks which has addressed itself to what has been happening south of the border in relation to health and social care. Slowly, inexorably, and almost at a snail’s pace, the linkage between health and social care has started to dawn on our popular media. Put simply dealing with a crisis in A and E without addressing the underfunding of social care whereby people have no provider to help them get home or to move into a care home is a fragmented effort doomed to failure. In a Scottish context targets around delayed discharge and unnecessary hospital admission have to have social care providers  at the heart of the design of solutions to the challenges.

 With integration in Scotland there is a real potential to make whole system thinking and approaches a reality. But it will not come easy because the constituent parts of the ‘machine’ are so diverse and often instead of working collaboratively are designed or made to work against each other.

This is very much the case with the way parts of the system relate to the  independent sector. We know that in some Integrated Joint Board areas in Scotland there has been and continues to be significant progress in achieving positive outcomes for people. Where this is happening the culture of partnership, collective decision making, shared risk, and consensual leadership is being fostered and nourished. Where things are not working so well, it is where the ‘them and us’ mentality, professional separateness, role defensiveness, lack of a trustful, transparent and respectful engagement are all too apparent. For instance, where the independent sector is at the table as a partner on IJB Boards then there are positive shared outcomes – where we are not present then a critical part of the machinery of care is left to rust on the side.

We can no longer tolerate an approach to health and social care which tries to deal with the distinctive parts on their own. The interconnectedness is self-evident. We have real potential to enable the whole health and social care system to work. This can be achieved only by whole system approaches; in planning for our shared workforce, in adequately resourcing social care, in developing reciprocal relationships between the NHS and social care, e.g in relation to nursing, in giving value to the contribution of social care staff and in so many other ways.

I hope 2017 despite the clear challenges ahead of us will continue to embed a culture which addresses the cracks of the whole rather than the fragments of those who attract the most attention.  Whole system approaches result in whole system responses.

And lest we forget the outcomes we all want are not about getting a machine to work, but that every woman, man and child at the point of their need receives health and care supports when they require them, where they are and which serve to foster their wellbeing and wholeness.

And … I wish you all a working boiler and a ‘warm’ and healthy 2017.

Donald Macaskill

@DrDMacaskill

Collaboration – Cooperation or Fraternizing?

Collaboration – noun

1. The action of working with someone to produce something – cooperation
2. Traitorous cooperation with an enemy -fraternizing

Collaboration is a word that that is used frequently in these times of partnership working. Talking to colleagues across Scotland both meanings of the word seem to be in play across Partnerships where some have embraced the notion of working cooperatively whereas others seem to have a notion that working with the independent sector is a form of fraternization. Within independent sector organisations a similar dichotomy is at play with some people willing to work together whilst others will not share ideas and good practice with similar organisations.

Luckily for me I work in an area – Angus – where cooperation has the upper hand over fraternization, it is uneven but spaces are opening up for cooperation between people at different levels in different organisations to bring about service innovation and change. This became clear at a recent meeting of one of our locality care home improvement groups. Sitting round the table were Care Home Managers -Corporate and Independent, a GP, Practice Managers, Pharmacist, Health Service Manager, Care Manager. During this time participants agreed to setting up two tests of change relating to improving medication systems across Care Homes, Health Practices and Community Pharmacy. Discussions were positive and people were listening to each other as they discovered the systems and limitations of how people work in different parts of the Partnership. People left the meeting commenting on how it had been useful and helpful to their own work. I then caught myself thinking back to previous meetings of the same group where attendance had been low and I was having to sell the idea of positive collaboration to various people. It has not been an easy process and I am sure that the progress of the group will be uneven but I am hoping that the positivity of this last meeting will continue and people will realise that collaborative working is good for all of us and the people who use our services.

 

 

Twelve Christmas words and wishes

The Christmas and New Year period mean different things to different folk. For me it’s an annual opportunity to engage in an ever failing effort to try to beat the quizzes in our newspapers. My competitive instinct comes to the fore when I convince myself (wrongly) that I really do know the name of Cruz Beckham’s first solo or the winning baker in the Great British Bake Off.

But it’s also a time of reflection, recollection and reconsideration.

2016 has been a busy and ‘interesting’ year. For me personally it’s seen the start of my role as CEO of Scottish Care and the start of these blogs on our new website. Looking back on them they have covered a wide range of topics. That is itself descriptive of the amazing scope of the independent care sector. But in the spirit of the season here are my Twelve Christmas words and wishes:

Nursing

Scottish Care has produced two nursing reports in the last two months. https://www.scottishcare.org/nursing/ . I am grateful they have been so well received and that we are seeing progress on their recommendations. I was privileged to conduct one of the interviews in the Voices report and that conversation has left a deep impression on me. It was with a dedicated nurse who was growing tired of workload pressures and the lack of value accorded to her role in caring for older people. She felt that others viewed her as ‘just a care home nurse’. So my Christmas wish would be for a society that values nurses who care for our older citizens wherever they work whether care home or an acute hospital ward.

Palliative Care.

I’ve personally spent a lot of time with people at the end of their life. There is a transparent truthfulness and honesty at such times and in such conversations. But the discussions I have had this year with frontline care staff show me that we aren’t giving enough time to paid carers to be with those who need simply to talk, to sit and be still, to have someone bandage up their fears as much as to attend to their physical pain. So my Christmas wish would be for a society that values those who sit and hold the hands of the dying by adequately resourcing their work.

Dementia

For me dementia has been a personal and professional concern. My mothers’ own journey with the disease came to an end this past year. Dementia takes over your living when it comes into your family; its rhythm is one which echoes emptiness where once there had been shared memory and story. But I also want to celebrate the capacity and contribution of those who live with dementia rather than, as some do, seeing people with dementia as a problem to be addressed. So my Christmas wish is that people will stop talking about dementia ‘sufferers’ and start celebrating dementia lives.

Human Rights

The beating heart of any society is the degree to which it speaks for the voiceless and recognises those on the margins. Human rights provide the language for such an articulation; they are the vocabulary that enables people to be treated and dealt with not out of sympathy or charity but as equal citizens of a community. So my wish for Christmas is that in Scotland we continue to challenge instances where the rights of our older citizens are minimised, ignored or suppressed. There is no use-by-date on one’s rights.

Living Wage

My first public words in my new role as Scottish Care CEO were a positive recognition of the decision to pay frontline care staff the Scottish Living Wage. Yes, it has been hard and at times a challenge to implement – but the positivity of giving people a wage by which their work of care is valued cannot be downplayed. So my Christmas wish is not only that we are able to build on what we have started and to improve the terms and conditions of carers, but that we work to create a society where those who care are accorded the greatest possible societal value and are awarded appropriate financial reward.

Care Home Reform

33,000 people live in our care homes and this year has reminded me of the astonishing brilliance of the care which is received by so many. But that care comes at a cost. The reform process which has occupied Scottish Care and our partners in the last few months, is seeking to build on existing best practice so that we create a care home sector fit for the future. So my Christmas wish is that Scotland has the courage to adequately fund the care of some of our most vulnerable citizens.

Fullness

The negative, limiting image of people living in residential care or in their own homes and receiving support is often wholly wrong. I have met countless individuals who aren’t simply waiting for their end to visit them but are striding out to own their futures, living with enthusiasm and energy in the face of illness and long-term conditions. Too often society constructs isolation and fosters loneliness by doing things that fail to include, engage and involve our older citizens. The lives of those in care homes and in their own homes are rich to overflowing with dreams still to be realised and contribution lying untapped. So my Christmas wish is that as a society we stay silent for just a second to ask and listen to what older people want from the Scotland that is their home and their future, and to learn what older people can give to the rest of us both now and tomorrow.

Age

Perhaps more than anything in the work I do I have become increasingly aware that we treat people differently based on an artificial number – usually 65, sometimes 70,

sometimes 80. I have written this year that the time is right to stop using language such as demographic ‘time bomb’, to stop subconsciously regretting longevity, and instead to seize the opportunities given by longer and healthier living. But I know that real discrimination happens daily for many of our older citizens, so my Christmas wish is that in 2017 civic society in Scotland will come together and work towards creating a legal framework that adequately protects the rights of older Scots.

Struggle

2016 has been a year of struggle for many of the providers who offer care services across Scotland. I have had too many conversations with individuals who have felt that the pressures of viability and unsustainability have become overwhelming. I have personally despaired of the system of competitive tendering of social care, especially in care at home services, which makes a mockery of dignity and is as far away from person centred care as the heavens are from the sea. So my Christmas wish is that collectively we find a way in which social care can be arranged which will banish forever the obscenity of 15 minute visits and enable small, often family run businesses not only survive but thrive in the giving of care.

Partnership

Partnership working, co-production and collaboration have almost become the buzzwords of the age. They speak to the potential of finding common cause, working together for the benefit of the person needing support and focusing on outcomes rather than systems. Where I have seen partnership work it has fostered remarkable innovation, enabled shared risk-taking and created mutual respect. But independent social care providers have struggled with being heard and represented not least in our Integrated Joint Boards where only 7 out of 31 have representation. So my Christmas wish is that in the reshaping of social care in Scotland we don’t just talk the talk but walk the walk of partnership and realise that partnership without presence is meaningless.

Celebrate

And my last word and wish is that over the next few months and year we all of us, whether we commission care, work in direct support, receive care, or simply talk about care – that we all of us work together to daily celebrate the good rather than talk up the negative; that we give space to hear stories of compassion and care beyond cost; that we influence our media to tell our nation of the thousands of individual acts which every day go unnoticed, unmentioned and unheralded – because that is in essence what happens across Scotland today and everyday.

This Christmas I for one want to thank the 98,000 workers who are the life-blood not only of the independent care sector but also of our communities.

Merry Christmas

Donald Macaskill

‘Cinderella Syndrome……..’

‘Remember Cinderella, when the clock strikes midnight, everything will change.’  Sage advice from the kind and generous Fairy Godmother in the much loved children’s story ‘Cinderella.’

With the festive period now in full swing we find ourselves rushing around full throttle, busy with work, parties to attend, presents to wrap, trees to trim and in my case a very demanding ‘elf on the shelf’ who needs to be moved around the house on a nightly basis!  Then suddenly the clock strikes and everything changes………

Prior to joining Scottish Care I worked for 17 years as Project Manager with East Ayrshire Carers Centre, a voluntary organisation providing information, advice, support, training, leisure, respite and social activities to unpaid, family carers of all ages in East Ayrshire.  On a daily basis I developed services and provided support to a number of individuals, all suffering from ‘Cinderella Syndrome.’  Bong, the clock strikes and a mother gives birth to a child with complex needs, bong, a husband keeps watch by the bedside of his wife who has suffered a life changing stroke, bong, a long expected dementia diagnosis is finally given.  All major events which will change life as they know it and nothing will ever be the same again.

Carers Centres of which there are more than 25 all over Scotland, have a very particular unique selling point in that they are there totally for the carer, the family member or friend devoting their lives to those most dear to them who have become disabled, frail or suffer at the hands of a drug or alcohol addiction.  They are the number one priority.  Typically, when a carer first presents they are at the end of their tether, unable to cope and on the verge of becoming unwell themselves.  Sometimes, the listening ear of someone who is non-judgemental and who they know they can talk to in confidence is all they need to get them back on track.  More often than not however, much more complex support is required.  Carers Centres can assist with the completion of benefit forms, referrals to social work to access assessments and additional services and in the case of East Ayrshire Carers Centre, in conjunction with the local authority, carry out a ‘Carers Assessment’, taking into account their needs for additional support and respite. Centres can also provide the carer with a much needed social outlet.  Many carers suffer from loneliness and isolation and meeting people in a similar situation at training events or social events such as coffee mornings can have miraculous effects and supportive friendships can be developed which go far beyond the scope of the work carried out by the Carers Centre. 

Being a family carer is difficult for adults but it can be even more traumatic for young carers and young adult carers who commonly are caring for a parent, grandparent or sibling on a daily basis providing personal care and support far beyond the expected capabilities of their tender years.  The youngest carer I ever supported was a 7 year old girl who was looking after her mum, a single parent, who was receiving treatment for cancer.  This vibrant young girl, with bouncy red curly hair, not unlike Annie, the character in another much loved movie, was brutally honest yet pragmatic as I chatted to her and summed up how many carers feel when she said, ‘I do lots of things for my mummy, like carry buckets of sick when she’s not so well, but if you really, really love someone, you don’t mind.’ 

In general carers don’t mind, they carry out their role willingly but additional external support is often assessed as being necessary and many rely on the support provided by Care at Home services on a day to day basis and Care Homes for much needed respite.  They open their homes and their hearts to carers and entrust the well-being of someone very precious to them.  As one carer said to me, ‘the carers that come into my house four times a day are amazing, so kind but I told them right at the start, she might just be one person to you but she’s the world to me.’  So if you’re reading this and you’re perhaps a carer, a nurse, a provider, a social work professional and you’ve just had a difficult conversation with a family carer whose being demanding, critical or emotional, please remember, the person they care for may be just one person to you but they’re the world to them.  So, as the big day approaches, take 5 minutes out of your hectic schedule and find the number of your local carers centre and when your next talking to a family carer, ask them if they are aware of the services a carers centre can provide to them, it just might be the best gift you give this year.

As it is Christmas, my gift to you is the ‘happy ever after’ part of the Cinderella story.  I recently met the 7 year old Annie lookalike who is now 27 and I can happily report that she proudly achieved a second class honours degree, has met her Prince charming and is an amazing mother to a beautiful baby boy, and her mum, who made a full recovery, is a very proud Grandma.  Merry Christmas.

Laura Bennie   

Dance me to the end of love …

 

As we grow older the sounds and voices of our life and its conversations change; they continually ebb and flow, re-energise and diminish. Some voices grow quieter and less significant, others lose their fire and passion, their strength and depth; and with the passing of the years many more, grow silent altogether. 2016 has been a year when some of the most familiar voices of my youth and adult life have grown silent. And perhaps more than anyone I have been moved by the death of the singer, poet and philosopher Leonard Cohen.

 

Leonard Cohen divided people between those who loved his music and those who reached for the mute button. Certainly this was true of my friends, some saw his lyrics as laden with deep insight and profundity about the human condition whilst others thought that he was the depressing master of despair and angst.

 

I am unashamedly in the former camp and I’ve always admired not just his expressive voice but also perhaps more than anything his creativity with words, rhythm and language. Just before his death he had released an album which according to his son he considered to be one of his best – ‘You Want it Darker’

 

In an extensive interview in The New Yorker in part promoting the album but also reflecting on what an increasing awareness of mortality gave him, Cohen said:

 

 

“At a certain point, if you still have your marbles and are not faced with serious financial challenges, you have a chance to put your house in order. It’s a cliché, but it’s underestimated as an analgesic on all levels. Putting your house in order, if you can do it, is one of the most comforting activities, and the benefits of it are incalculable.”

 

Indeed though his death was sudden, Cohen had already spoken at length this year of his thoughts about life, death, memory and attachment. One of my favourite Cohen songs was ‘So Long Marianne.’ Just a few months ago Cohen sent a moving final letter to the dying Marianne Ihlen, the subject of his song, who died in Norway on July 29 at the age of 81. They had been lovers and partners for a decade in the 1960s when they had met first in Hydra, Greece.

 

Marianne’s friend Jan Christian Mollestad told Canada’s CBC radio that he had contacted Cohen, 81, to tell him Ihlen was dying of leukemia and had only a few days to live. He recalled: “It took only two hours and in came this beautiful letter from Leonard to Marianne.

 

“We brought this letter in to her the next day and she was fully conscious and she was so happy that he had already written something for her.”

 

Mollestad, a documentary filmmaker, read the letter to Ihlen before she died.

He recalled: “It said:

 

‘Well Marianne, it’s come to this time when we are really so old and our bodies are falling apart and I think I will follow you very soon. Know that I am so close behind you that if you stretch out your hand, I think you can reach mine.

 

“And you know that I’ve always loved you for your beauty and for your wisdom, but I don’t need to say anything more about that because you know all about that. But now, I just want to wish you a very good journey.

“Goodbye old friend. Endless love, see you down the road.”

 

Mollestad told host Rosemary Barton that when he read the line “stretch out your hand”, Ihlen had stretched out her hand.

 

“Only two days after, she lost consciousness and slipped into death. And when she died, I wrote a letter back to him saying in her final moments I hummed A Bird on the Wire because that was the song she felt closest to.

 

This story when recounted went viral on the Internet and especially Twitter. Simple words with real depth and meaning between two old friends written by someone with a realisation that his own journey was coming to its close; that the last few beats of his dance were being played.

 

At Scottish Care we have recently launched project work on palliative care in care homes and care at home services. There are four main strands to this work. The first has been the holding of focus groups with staff who work on the frontline, daily working with, supporting and being with those who are approaching the end of their life. I have been privileged to be present at a couple of these events and have heard rich, challenging, beautiful and harrowing stories. The majority of individuals who die in Scotland today and who are receiving social care supports will, in all likelihood, be supported by someone who works for an organisation which is a member of Scottish Care. We are eager to tell the story of these workers and organisations as they deliver this exceptional care despite challenging contexts. A report on these focus groups and their insights will be available at a workshop on February 8^th. Please keep an eye out for an invitation.

 

The second strand of the work is an online survey which can be completed at

https://www.scottishcare.org/scottish-care-news/sector-news/palliative-care-survey/ ;  the third an identification of best practice around Scotland, and the fourth strand is called ‘This speaks to me…’

 

For many of us it is through the words of poetry and story, through music and art that we are helped to gain insight into the nature of good care and support at the end of life. ‘This speaks to me…‘  is an opportunity for workers, carers and family members to share words, images or music which tell them something about what good palliative and end of life care can or should be.

 

Leonard Cohen provided a space to talk, music to ponder and images to paint insights which go beyond the ordinary and the tangible; he illustrated that some of the most important lessons in life cannot simply be limited to text, however creative, and I hope we can all take the opportunity of sharing the things, and the voices, that help ourselves and others to ‘dance to the end of … love… down the road.’

 

 

Dr Donald Macaskill

Loneliness and Social Isolation

Most of us are lucky to have good friends, family and colleagues in our lives that provide us with the emotional support we need and we often take for granted the range of social opportunities that we can access. We know that not everyone is as fortunate.

Research shows an increased threat to Scotland’s health from loneliness and social isolation. Triggers for loneliness include significant life changing events such as bereavement, and disability / illness. Research shows that social isolation and loneliness can lead to, for example, people eating, drinking and smoking more that can then result in poor physical health and that feelings of loneliness are also linked to poor mental health.  300,000 people contact the Samaritans each year with loneliness as the main reason. The Samaritans advise that loneliness can lead to depression and to other mental health problems accounting for 90% of suicides. They report that the risk of suicide is higher among men and is rising among older men, particularly those in areas of social isolation and ask ‘how can we address the health needs of older men who may be becoming increasingly isolated?’

 

Loneliness of course affects people of all ages and backgrounds and the broader impacts of loneliness include increased use of health and social care services e.g. GP / NHS24 / A&E / unscheduled admissions. If people have no one to turn to in a crisis to give them the reassurance and emotional support they need, it is more likely that they will contact emergency services. We are part of a multi-agency ‘Experienced Based Co-Design’ project in North Lanarkshire that is examining why some people frequently attend A&E in distress but who do not need clinical intervention and who are not admitted. This includes people: in poverty; with poor mental health; with addictions; who are homeless; and elderly people living on their own. Findings from staff interviews conducted so far confirm that loneliness and social isolation are relevant factors. The aim of the project is that service users and staff will work together to develop services that better meet the needs of these people by providing the right care at the right time in the right place and avoid presentation at A&E.

 

Some of the loneliest of all are those that are housebound through physical disability and who need help and support to access social events but that support, sadly, is not always available or comes at a cost that many can’t afford. Appropriate transport is currently a massive barrier. North Lanarkshire has an enviable third sector subsidised transport service but it is stretched to capacity and often wheelchair accessible taxis are the only option. Some people will need accompanied by their carer if they are to participate in social events but who meets this cost assuming SDS is not in place? What more can we do to enable people who are lonely and socially isolated get the support they need to access local community services?

 

We have started a joint pilot project in one of the localities with an Independent Care at Home provider, the Third Sector community consortia and Locality Link Officers to identify people receiving care at home services that might benefit from becoming involved in social activities in their local area or from a befriending service. This is exciting work that will provide us with an evidence base to help inform future planning and delivery.

 

Research has shown that unpaid carers and family members are also at risk of depression, social isolation and loneliness as they give up their own social activities as their caring responsibilities increase, and as they struggle to cope with the decline and death of a loved one. Loneliness and social isolation after the unpaid caring role no longer exists can be extreme. It is important to make sure that people register as carers but this can be difficult as they often don’t see themselves as such. There are excellent support services available for unpaid carers in North Lanarkshire. I have been working with staff at North Lanarkshire Carers Together to help facilitate awareness-raising about this within the Independent sector.

 

The good news is that people do care. In Scotland, the problem is recognised and many partners, agencies and community groups are working together to do something about it. This year the Scottish Government’s Equal Opportunities Committee instructed an Enquiry about Social isolation and loneliness – the first of its kind in the world, and subsequently released funding to help tackle loneliness and social isolation. It has also pledged to create a National Social Isolation Strategy to ‘ensure a holistic approach across government to problems of loneliness and isolation”. It anticipates that the integrated Joint Health & Social Care Boards will play a key role in taking action. Consultation is planned for February 2017.

 

At a local level it is apparent to me that those delivering health and social care across North Lanarkshire in the statutory, third and independent sectors are acutely aware of this growing situation and of the potential for it to worsen as more people are living longer at home. There are already many huge hearted people working every day doing everything they can to support people and help improve their quality of life in line with the National Health and Wellbeing outcomes. My hope is that we can do it better together and I am looking forward to being part of that with independent providers and our partners across North Lanarkshire.

 

Local Integration Lead for North Lanarkshire – Linda Scott       [email protected]