The carer’s voice – why it matters

In 2005, ten years after my mother was diagnosed with dementia, I started to write a blog.

At the time, I was self-employed, juggling jet lag, two small children, an irascible but loving husband, a cat, two rats, and the care of a matching pair of demented grandmothers. To take on another commitment was a little daunting. But it was a metaphorical spit in the eye of dementia; an attempt to ‘do’ dementia, rather than let dementia ‘do’ us. And I wanted to write a testament to Mum.

The first entry of ‘The Dandelion Clock’  read:

“The Dandelion’s puffball can tell you the time, but it is a fickle instrument. Time is dependent on how hard you puff and how quickly the seedlings fly away. The one thing that is constant, is that in the end, all the seedlings are gone. Dents de lion and pissenlit – it’s all the same in dementia.” It wasn’t particularly an original analogy, but it seemed to encapsulate the disintegration of a fine mind combined with a pollination of all the young minds that Mum had nurtured in her past.

Happily, that puffball defied two decades of dementia to remain joyfully and raggedly intact. Throughout, the guiding principle for me and my small band of carers was that Mum was living with dementia, not dying from it. A week before she died, I had persuaded Stagecoach to make a small detour to their publicised route, so that we could host a bus party for all, replete with mocktails, balloons and streamers. Our mantra “where there is no cure, there is always care” had a subtext of fun. Care meant living to the max and it looked something like this:

  • Good care requires carers first and foremost, to be experts in the person and secondly, the illness; this is the only route to person-centred care.
  • Good care is a two-way street, just like communication. Listening and receiving are as important as saying and doing. The goal is to enhance sense of self and self-esteem.
  • Good care means helping someone to stay connected to the place/people/things that matter.
  • Mental and physical wellbeing are inseparable. You cannot nurture one without the other.
  • Good care is like conducting an orchestra. You don’t need all the players all the time but you have to be able to read the score and know who does what.
  • Celebrate all that is achievable and do-able today: learn to work around the things that are lost.
  • Plan for ‘What if..?’ Carers are adept at crisis management but even chaos has a theory.
  • Accept that no-one will care as much as you do. About the person you care for or about you.

From the beginning I knew that, as a carer, I had to speak up and speak out. I agreed to become a founding member of Alzheimer Scotland’s Dementia Action Group in the hope that we might spark a discussion with Social Services to improve local support. I’ve spoken to medical students and nurses at the Universities of Stirling and Abertay, at DSDC and at the invitation of Alzheimer Scotland, Social Services and at carers conferences. I’ve spoken about our interpretation of best practice and about the impact of caring. And for the last four years, I’ve been privileged to represent all carers in my role as one of the carer reps sitting on the Executive Committee of the College.

Sitting in a low-ceilinged, sardine-tin of a room from two to five on a wintry afternoon takes dedication. Members travel from far afield to attend and rarely miss that quarterly meeting. Carers and service users contribute on equal terms with our medical colleagues. We feel like equal partners in care. We have true parity of esteem. I applaud and am humbled by the Committee’s recognition of carers and service users – it is rarer than they know.

 In the beginning, blogging gave me the freedom to speak my mind, about what was happening to me, to my family and the difficulties in piecing together support that encompassed the right balance of fun, compassion, respect and safeguarding. And blogging gave me a platform to write about the evolution of statutory care under the guise of “improvement” to service users and clients. In those days, the carers’ voice was not as sought-after as it is today.

That was then

If medication, and the review and tweaking of medication, is integral to some mental health care (less so in dementia), the careful construction of a social/community network with Social Service support is its important counterpart. And that remains as true today as it was over a decade ago.

I was not the only carer and writer to notice an imperceptible shift in social care provision around 2004. For us, it came in under the guise of ‘the flexible delivery of service to clients’. Our team of three carers mushroomed to twenty, thirty. Continuity and routine collapsed, Mum stopped eating and depression cast its long shadow.

The odd thing was that the more services were driven by financial imperative, the more fuzzy, buzzy phrases infiltrated service-speak. Thirty years down the Kitwood line and we had a slick lexicon to de-stigmatise and re-define mental health and those of us in its orbit.

Suddenly, carers were on “journeys”. Unwittingly, I had embarked (apparently) on a ‘career’ that might span years or perhaps decades. Meanwhile, the NHS and Social Services had clients, service-users and customers. And while I respect the wish of anyone who is living with a mental health issue not to be shoe-horned into the role of victim, we’re not talking Tesco’s or Apple Genius bars. ‘Patient’, from the Latin patior (to suffer), sometimes is the word. There is real suffering – and it’s not disrespectful to acknowledge that.

Re-vamping the branding doesn’t fool anyone, if the product on offer is pared to the bone. Eighteen months after Mum died, I wrote a letter to the First Minister. In it, I detailed my experiences as a carer and offered suggestions as to how things might be improved. I wrote about the nonsensical protocols that straightjacketed competent professionals into solutions that failed the very people whom they sought to serve. Solutions that were designed for bean-counters but which left even the most dedicated health practitioner demoralised and demotivated.

I asked about that much-publicised switch to care in the community. Surely that’s an objective to unite us all? Offering the prospect of cheaper care, no more silos, greater social acceptance. But as care needs amplify, I wondered how individuals were to access hospital beds, variable airflow mattresses, bath aids, stand aids, rise and recline chairs and wheelchairs? And if you are fortunate enough to fast-track those forms in duplicate and triplicate to get the equipment at a time when you needed it, how do you manoeuvre the hoist over carpets, get it through doorways and under the divan?

What about tax relief on care items no longer funded by the NHS or Social Services? On paid care so that you can continue to work in tandem with caring? What if carers with a proven track record of caring were allowed to claim against the estate to fund the costs of retraining and re-skilling in order to re-enter the workforce?

Eventually I got a reply, expressing condolences on the loss of my father.

This is now

Today, there are more mental health initiatives than ever before. Scotland boasts a Third Dementia Strategy, a Mental Health Strategy, a Carers’ Act, Frank’s Law, Self-Directed Support – but it amounts to diddly-squat without the commitment and the people to carry it through.

Legislative changes have put carers on the political agenda so why do so many carers report that their lives are harder than before?

Telling your life-story has become a little like old repeats on TV without the corny jokes or the punch-line. Ironically, carers in Scotland feel the contraction in services more than their counterparts in the rest of the UK. Self-Directed Support (2014) and the Carers Act (2018) might look good on paper but both are badly under-funded and poorly and unevenly implemented region to region. Local authorities and Social Services have faced swingeing cuts in staff and budgets.

The core issues remain the same as those that we were writing about in 2005 but life seems even harder for today’s carers. Only a small percentage are able to access support that is appropriate to them and the person whom they care for. Only 10%+/- of carers receive Carers’ Allowance and the Carers’ Annual Supplement. The quality of paid care is widely reported to be below par, while respite, even when available, is rarely tailored to age or condition. Inappropriate care and care settings are particularly pertinent in mental health care across the ages.

The State of Caring Report (2018: Carers UK) showed that conditions for carers have deteriorated even since 2016-2017. Caring brings financial hardship; it impacts on job, status, retirement, self-esteem and life opportunities; and it brings social isolation and dislocation. In the UK, 72% of carers suffer mental ill health as a result of caring. In Scotland, mental ill health affects 75% of carers.

What have carers got to do with the College?

Self-management of mental ill health and self-care to uphold mental wellbeing is surely the optimum. There are peer support groups, community projects and online programmes that are excellent – and we are getting better. But the reality is that so often, whether it’s just once or for a lifetime, support is needed from a family member or a close friend. And that’s where carers come in.

Recently, I attended a Carers’ Forum for which the main topic was desirable outcomes from the Third Dementia Strategy within the broader remit of the Mental Health Strategy (Is that the Strategy in which carers barely get a mention? Yes, dear Reader, the very same). Yet again, carers’ wishes were for befriending; the restoration of day care; better access to respite; the need for solutions and packages that were bespoke and person-centred. Every concern was noted but it became apparent that the focus of the Partnership was Telecare.

I’m not against Telecare. I quite fancy having my own care robot, a Dobby with interchangeable heads. I’d be hard pressed to choose Alan Garner or Joanna Lumley. But we are so far from that. And the idea that the most cost-effective human contact substitute is a disembodied voice channelled via a box on the wall because we cannot afford better, is depressing and dystopian.

My mother thought that the neighbours talked about her via her radiators. For weeks, she sidled along the walls so as not to wake the forces contained in those magnolia panels.

It’s people, it’s always been people, who can make a difference. And that means all of us – you, me, the psychiatrists, GPs, nurse practitioners, CPNs, pharmacists, psychotherapists, service users and carers – all of us playing the right notes in the right order- we’re the people who can make a difference.

Get a diagnosis and you have a chance of accessing financial and management support. Advances in medication combined with psychotherapeutic intervention augur well for successful self-management. And when self-management falters, carers with commitment and compassion and old–fashioned love are the backstop.

Some fifty years ago, Edward Lorenz theorised that the fluttering of a butterfly’s wings multiplied a thousand times would trigger changes in the atmosphere that could alter the course of a tornado. None of us can do it alone. Together we are so close to opening doors, to giving people a real chance to choose life, not just existence.

Those who have the privilege to help others transform their lives, often find that is actually their own lives that are most transformed in the process.

“There is no passion to be found in playing small – in settling for a life that is less than the one you are capable of living.” Nelson Mandela

Katharyn Barnett

Katharyn was originally invited to write this article by the Chairman of the Executive Committee of the Royal College of Psychiatrists in Scotland to mark the end of a four-year term serving on the Executive Committee as carer representative. The item appeared on the Royal College of Psychiatrists’ Scotland webpage as a guest contributor to the College’s blog. Having left the Carers Centre earlier this year, Katharyn is now engaged as a Dementia Link Worker in the Forth Valley team.

 

 

Systems Change, Relationships and Love

When I was asked if I fancied writing a blog for Care Experienced Week, it wasn’t a tough decision. I enjoy putting pen to paper, because I like to reflect and writing helps me to do that. At Life Changes Trust we put a lot of effort into being a learning organisation, but at the same time we are often juggling lots of competing work demands and so reflection time can be squeezed.

Whether I’m putting a blog together, crafting a Tweet or creating a short journal entry, writing helps me to carve out time and space to take a step back and try to make sense of the world in some small way. I suppose it’s a form of storytelling, and unsurprisingly I’m a big reader too. One of my friends gave me a framed Louisa May Alcott quote that gives a bit of insight into what folk think about me:

“She is too fond of books, and it has turned her brain”

I’m ok with this image of me as someone who lives in her own head a bit, as it has some truth, but isn’t the whole truth. The human brain is wired to think in stories – stories helped our distant ancestors share knowledge about how to survive in a hostile environment and became an essential element in the survival and development of our species.

In our work, we have found that giving people the tools to express themselves and tell their own story offers a route to a deeper understanding of what matters to young people with care experience, people living with dementia and unpaid carers. For anyone interested in designing services and supports that focus on what people need and want to live their lives well, this is vital territory.

A couple of years ago the Trust delivered a leadership programme for people who have important connections with the workforce and carers of young people with care experience. The programme was focused on systems change, in recognition that many of the challenges young people with care experience face are caused by system factors such as organisational and service behaviours, public attitudes, market forces and policy decisions and policy implementation.

The leadership programme was set a challenge by the Trust’s Advisory Group, a challenge which spoke to all of the above system dimensions, namely, “how do we put love and relationships at the heart of the care system?”

 

This challenge grounded the programme and set us off on a quest to start writing a fresh story about the care system with young people who have lived it.

 

The Advisory Group is made up of young people with their own unique experience of growing up in the care system, and for three years now we have been building relationships with them, both as individuals and as a group. I now realise that a lot of this has been about being alongside the group as they have developed their story. At the same time, it has been important that we share aspects of our own stories, both as people and as representatives of the Life Changes Trust.

We knew straight away that the group was going to be much more than the sum of its collective care experience, albeit that the perspective of the members, which is grounded in the often harsh realities of life growing up in the care of the state, has been invaluable to us as we have tried to design funding initiatives and create collaborations which truly have the potential to create lasting positive change.

We have learned that as individuals they have multi-faceted identities – including those of loyal friends, hard-working students, loving parents, passionate campaigners, talented creatives, thoughtful citizens and proud brothers and sisters. Their honesty and openness in sharing their experiences and perspectives has constantly inspired us as staff members to open up and connect as human beings as well as people with a job to do.

We took this ethos into the leadership programme and challenged participants to ask some searching questions of themselves – were they really ready to promote a relationship-based approach amongst the staff and carers they lead and represent? If staff and carers who get alongside young people every day are to show caring, loving behaviours, it is essential for organisations to show care for those same staff members and carers.

The leadership approach needed to create the kind of environment where people feel safe and supported to act with empathy and kindness, calls for different qualities to those we may traditionally associate with leadership.

Top down approaches are not helpful, because strong relationships require us to be present in the moment, to be self-aware and alert to the needs of others. In other words, people need autonomy and leaders need to be open to distributing their power. This type of leadership also calls for people to put their organisational competitiveness to the side. Tackling systems challenges requires us to work across organisational and service boundaries while keeping the focus on what young people need and want.

We held a residential as part of the systems leadership programme, and in the first day we got straight into some of this challenging territory. We found that the spirit of openness and honesty which had been present with the Advisory Group from day one was much more difficult to foster in a group of people with decades of professional experience behind them. There were some scary moments when we worried that the whole enterprise was doomed to failure. And of course some of these moments have now become the stuff of legend – stories that we dust off when we meet new people and want to let them know what we’re all about, or stories that lift us when we have doubts.

Ultimately, despite the rocky start, the programme proved to be influential in a number of ways. Rosie Moore, a former member of the Advisory Group which set the love and relationships challenge, was nominated by a member of the programme to take part in the Journey phase of the Independent Care Review, and has gone on to be a Co-Chair of the Love Group. New collaborations have developed, for example between Staf (Scottish Throughcare and Aftercare Forum) and CYCJ (the Centre for Youth and Criminal Justice) in relation to participation for young people with youth justice experience and trauma-informed approaches. Care Inspectorate standards were influenced – with a focus on inspectors assessing the quality of relationships available to young people in care settings. Internally, at the Life Changes Trust, we designed new application processes which privileged both relationships and the perspective of young people.

Perhaps more importantly than all of that, however, is the impact on individuals and the way they approach not only their work but their lives. By challenging us to open up and be honest about our personal traits, the programme gave us a small taste of what it must be like to be a young person who is constantly expected to share sensitive personal aspects of their lives with strangers. It also made us think about the ways young people try to take control of their own narrative and reflect on events as a means of reaching out to others – by knowing ourselves, we have greater potential to know others and build lasting relationships.

At the Life Changes Trust, we believe much of the legacy for the work we have been doing lies in people. Creating better lives is not a mission for someone else – it sits with all of us, every day, as we have the potential to build relationships. Not relationships with stakeholders, or potential partners, or people with lived experience, or funders or anyone else who we may think can help us advance a short-term agenda – but open relationships with other human beings, without judgement or assumption.

This is the true work of long-term system change, and young people with care experience are showing us the way.

Carole Patrick, Director of Evidence and Influencing, Young People with Care Experience Programme

Dementia: Managing loss and addressing stigma in the journey to residential care: Part 2

I’ve been talking about managing loss and the transition into residential care for people with dementia, and how we can support their journeys.  I wanted to now talk about dementia friendly communities such as those funded by the Life Changes Trust.

Dementia Friendly Communities are first and foremost about inclusion.  For example, the Trust funded an allotment and community garden project in West Dunbartonshire, which offers a safe place for those affected by dementia to socialise and work alongside other people in the community.

By providing opportunities for people to contribute and volunteer within the allotments, the projects are continually providing ways to break down preconceptions and beliefs that many people hold about people affected by dementia. This allotment is also attended by members of the local care home, who thrive in the environment of the outdoors, where they can participate in gardening and growing fruit and vegetables.

Sporting Memories groups are another example of a Life Changes Trust supported project that helps to break down societal stigma and discrimination. The programme is run across Scotland and helps to promote both the physical and mental well-being of people affected by dementia. By meeting both in public and sporting venues, as well as holding meetings in care homes themselves, this helps to break down any negative attitudes towards people with dementia by showcasing that individuals are still perfectly capable of socialising and having fun with others.

 

Expanding into care homes also helps to ensure that residential care doesn’t limit or exclude anyone from continuing to participate in social activities and groups that they enjoy, while also providing other residents with the opportunity to attend as well, who may not be as able to commit to any external activities. This avoids both discrimination and exclusion of anyone who wants to attend, by ‘bringing the group to them’ and not depending on staff or family availability to accompany the person if needed.

Priority one of the Life Changes Trust is to enable people affected by dementia to live in a place that suits them and their needs. In a residential setting, talking to the individual about what they need and want for a good quality of life, what is still possible for them to achieve and encouraging them to redefine their goals will help them to discover new ways in which to enjoy themselves and highlight activities for them to look forward to.

The second priority of the Life Changes Trust is to protect and promote the independence of people affected by dementia. Maintaining and promoting the confidence of people is crucial to encouraging them to remain as independent in residential care as they can, minimising the risks of loneliness and boredom. A continuing sense of self throughout the transition into residential care can help to promote and maintain an individual’s confidence and dignity.

The third priority of the Trust is to support work that will guarantee that people affected by dementia get the help they need, when they need it. Providing choices and opportunities for people to voice their preferences and opinions, allows an individual to maintain a level of individuality, promoting their dignity and independence. Staff who adhere to these principles work with people affected by dementia in a person-centred manner.

Priority 4 of the Life Changes Trust is to create a culture in Scotland where people affected by dementia feel safe, listened to, valued and respected. Maintaining pride, resilience and a fighting spirit are crucial for an individual affected by dementia to feel involved and valued both as a person and as a resident.

The fifth priority of the Trust is to empower people affected by dementia to do the things that are important to them.  Taking the time to learn about a person’s life and what roles are important to them, can allow a care home to facilitate the continuation of some of these roles and maintain their pride, dignity and purpose.

The transition into residential care is a massive adjustment for everyone, including the care home staff. In order to deliver personalised and person-centred care, staff need to take the time to get to know the person, discovering their likes and dislikes, what motivates them and what they enjoy. Well planned therapeutic activities that reflect the person’s interests can be a good way to build up relationships. Taking the time to plan something for a new resident can make them feel listened to and valued, while simultaneously involving them in activities, and help them to settle in and readjust.

Keeping people active and engaged with a range of different activities is vital to preserve a person’s cognitive and social abilities. Interactive activities with visitors to the care home is a great way to get people involved, make new friends and maintain old relationships with friends and family outside of the care home. Creative arts, music, cooking and baking workshops are all examples of ways in which care homes can provide fun and interactive ways for residents to preserve their skills while enjoying themselves at the same time.

Resident-led timetables and classes will ensure that people are offered a choice and an opportunity to voice their preferences, for example allowing them to choose the times and days of the classes, along with what they would like to do within the sessions. This provides the best possible chance that people will enjoy and attend the sessions as it is catered for their preferences, whilst maintaining their sense of dignity, independence and remaining person centred.

 

Being made to feel like your opinion matters makes a person feel valued, respected and involved, all resilience building qualities that can help to improve a person’s experience of residential care and improve their quality of life.

But there is still work to be done.

A report by the Alzheimer’s Society in 2007 found that the biggest areas in need of work are the provision of activities and occupation, treating residents with dementia with dignity and respect, and the relationships between care home and relatives/friends.

And almost a quarter of those asked were unhappy with the level of their involvement in decision making about the care of their relative and over a quarter of carers felt that they did not receive enough information and updates about the care and treatment of the person they cared for.

These findings clearly show the gap between good quality practice and meeting the needs and desires of those affected by dementia, giving a focus for continuing work around improving the experiences of the transition into care for individuals and their families.

Recently, the Life Changes Trust invested £135,000 to ensure that the rights of people living with dementia in care homes are recognised and respected. Care homes across Scotland will benefit from the funding, and will use it to support the inclusion and participation of residents with dementia in a meaningful way, so that residents have a genuine say in their own day to day lives.  This will hopefully provide a precedent for future practice within care homes, transforming how people with dementia experience the transition into a residential setting.

 

Within this blog, I have tried to highlighted some of the current issues and areas for improvement facing people affected by dementia and their transition into residential care. All of the projects funded by the Life Changes Trust are undertaking transformational work with people affected by dementia all across Scotland. Dementia is not the end of someone’s life, it is merely the beginning of a different, and hopefully a more supported one.

Dementia: Managing loss and addressing stigma in the journey to residential care

Over 90,000 people in Scotland are estimated to be living with dementia, and between 2006 and 2016, the number of adults with dementia in residential care increased by around 30%.

The transition into residential care can affect more than the individual with dementia, as most people have friends and/or family around them that will also have to readjust to their move. Carers can find themselves with a smaller role and less responsibilities for the individual and so can also struggle with the readjustment of the transition.

Such a significant change in a person’s life results in many losses, such as the loss of one’s home, daily routine and freedom (to some extent). Loss of identity is also a big issue for people living with dementia in residential care homes – to go from being a homeowner, a wife or husband, to a care home resident is a massive shift in self-identity.

There are also many stigmas associated with a diagnosis of dementia, such as dementia being the ‘end’ of someone’s life (either literally or socially) or that those with dementia in residential care are there because they are ‘hard to manage’. Carers, friends and family are also sometimes unfairly stigmatised as having ‘given up on the person’ and having ‘got rid of them to a care home’.

There is also a lack of understanding around the impact and causes of some of the more inconspicuous or ‘unresolved’ losses involved with a move to a care home which can affect both individuals with dementia and their carers.

Kenneth Doka, a Professor of Gerontology, first introduced the concept of ‘disenfranchised grief’ in 1989. He defined it as ‘grief that is experienced when a loss cannot be openly acknowledged, socially sanctioned, or publicly mourned’. Put simply, disenfranchised grief isn’t automatically recognised and doesn’t hold the obvious need for mourning, such as the death of a loved one. For example, losing one’s identity after living with family for a large part of your life can trigger grief that can often go unrecognised or belittled, leading to unresolved, disenfranchised grief, which in turn can lead to a vast array of problems, such as a decline in mental health or the onset of depression.

For a spouse who may have been caring for their partner for years, the sudden loss of responsibility and their caring role can be a massive shock. Not only will their daily routine change, but the absence of the person will be significantly notable.

Pauline Boss from the University of Minnesota describes this experience as someone being ‘psychologically present but physically absent’.

Another threat to the well-being of individuals with dementia and their families is the risk of entering ‘anticipatory grief’.  Clinical Psychologist Therese Rando believes that this can form from an individual accumulating all of their previous related losses, developing a negative attitude towards the future, and focusing mainly upon all of the losses yet to come. For example, a person living with dementia who is transitioning into residential care might think of all of their previous losses – their decline in cognitive ability, their potential reduction of social freedom – and so begin to think mainly of further future losses. For a person about to enter residential care, they may easily presume that this means the imminent loss of their freedom, dignity and social life.

Another factor that can increase the risk of disenfranchised grief is the sudden exposure to the deaths of other residents. While individuals are likely to have experienced the death of one or two people outside of residential care, their exposure to death will suddenly increase. This may inhibit individuals from being able to acknowledge and respond appropriately to each loss.  Care staff are more likely ‘to be used to’ dealing with the death of residents, but for a new resident this can be overwhelming and scary.

So what can we do to ensure the general and mental well-being of all individuals transitioning into residential care, as well as that of their friends and family?

The Life Changes Trust has 5 main priorities relating to their dementia programme, based on what people with dementia and carers told them was important to them. They provide a solid base to begin to answer the above question. They are:

  • I live in a place that suits me and my needs
  • I am able to be as independent as possible
  • I get the help I need when I need it
  • I feel safe, listened to, valued and respected
  • I am empowered to do the things that are important to me

Another of the Trust’s areas of work is challenging societal stigmas and negative discourses surrounding people affected by dementia. One of the best ways to break down barriers and stigmas of those affected by dementia is by finding ways in which they can continue to play a role and have a visible presence in local communities and projects.

By integrating those affected by dementia with the general population, we can begin to challenge any preconceptions that people may hold, such as the belief that those with dementia are unable to function independently anymore, or are unable to continue with everyday life and activities despite their diagnosis.

Dementia friendly communities such as those funded by the Life Changes Trust, allow a safe place for those affected by dementia to socialise and work alongside other people in the community.

They also continually provide ways to break down preconceptions and beliefs that many people hold about people affected by dementia, both in and out of care settings.

I’ll talk in more detail about the Life Changes Trust funding for dementia friendly communities in part two of this blog.

Post Diagnostic Support

close-up-medical-equipment-stethoscope-161489

By Anna Buchanan, CEO, Life Changes Trust

In 2013 the Scottish Government made this commitment:

“…by 2015/16, all people newly diagnosed with dementia will have a minimum of one year’s worth of post-diagnostic support coordinated by a Link Worker, including the building of a person-centred support plan”.

Recently published Scottish NHS Board Performance data reports that in 2016/17, three in five people newly diagnosed with dementia did not receive the minimum one year of support promised by the Scottish Government. The same was true in 2015/16.

An article in the Evening Express (7/2/2019) picked up on the fact that just 18.6% of newly diagnosed patients were referred for support across the NHS Grampian area in 2016-17. When asked about these statistics, a spokesperson for NHS Grampian explained that not everyone chooses to take the package of support. This supposes it was offered to everyone and that 81.4% of those people turned the offer down. If this is indeed the case, there are some questions that need to be asked and answered.

  1. Why do people feel they do not want the support?
  2. Is it perhaps being offered at the wrong time when people may still be coming to terms with their very recent diagnosis?
  3. Would it be better if support was offered on further occasions as well as immediately after diagnosis?
  4. Where else are people finding support in the community post-diagnosis?
  5. Should there be multiple points of access to post-diagnostic support?

However, the NHS statistics do not tell the whole story. If Grampian, for example, were to look at the ways in which people with dementia and carers access support in other ways, that is, not commissioned post-diagnostic support, we may see a more expansive picture. It would be a more complex picture, but it may be a more hopeful one that also gives a better idea of the reasons why people may not want to engage with what appears to be a formal service strongly correlated with a medical diagnosis.

The Life Changes Trust has invested around £800,000 in Grampian over the past four years and through this investment has, to date, reached upwards of 1,200 people with dementia and 800 unpaid carers through various types of support. Some attend health walks, art classes, and fitness sessions, others may join carers groups, or find peer support amongst other people with dementia in their local area. There are many other organisations, not funded by the Trust, delivering similar work throughout Grampian.

This may not seem like ‘post diagnostic support’ in the traditional sense at first, but when we consider what many of these community-based projects are providing by way of advice and information it certainly is support that is provided post-diagnosis. It is a less formal way of accessing post-diagnostic support, with the access point being through an interest or a familiar place.

For example, for someone with dementia who has a lifelong loyalty to Aberdeen FC, what better way to receive information, advice and support than by attending dementia friendly walking football or a health walk at Pittodrie? The work done by Aberdeen FC Community Trust provides a community of support and opportunities for respite, but they also refer people on to other organisations for more specific support.

If a person has dementia and English is not their first language, they may need extra support to find information and advice in their own language (which should be provided free of charge by statutory agencies). The Aberdeen Council for Voluntary Organisations is currently working to make sure that people living with dementia, and who are from European Ethnic Minority backgrounds, can receive the support they are entitled to. There are many Black and Minority Ethnic communities that need this extra support but who find it easier to accept when explained and delivered in their own peer group and in their own language.

‘HOME’

housing

A significant pilot project has run in Aberdeen since early 2016 – the Dementia Enablement Project run through Castlehill Housing Association’s Care and Repair service. Fully trained dementia enablement staff meet with people with dementia and carers in their own homes to talk about small changes that might be made in the home to help them stay there for as long as possible.

This is because dementia is not just about loss of memory, it can also lead to significant sensory challenges, where the brain may misinterpret information and cause disorientation. For example, a highly patterned carpet may make someone feel dizzy; or a mirror that reflects passers-by may cause a person to think that a stranger is in the house. Fear and loss of confidence can result in a person staying indoors and not exercising, which can lead to an increased risk of falls. Loss of short term memory can mean that medication is forgotten or taps are left running. When these things happen, carers may lose confidence in their ability to care sufficiently and feel they must look for a care home placement earlier than expected. Care and Repair offers a number of solutions to these issues, for free.

Care and Repair

By making small changes in the home at an early stage (early intervention) many people with dementia in Aberdeen are living more confidently in their homes for longer and carers are relieved of a certain amount of worry. The average cost per person assisted currently stands at £243, but is likely to be lower once the project has been completed. Statutory services do not fund a service like this at present, though the cost savings to the public purse of keeping people out of hospital and care homes is obvious.

The dementia enablement staff have come across many people living with dementia who have had a fairly recent diagnosis but who have never seen a Link Worker. Some were not offered the service or are on a waiting list. Dementia enablement staff have discovered that some people did not take up the offer of support because they did not feel ready for it at that time or did not understand what was being offered.

Care and Repair is able to access homes through a practical offer of support that focuses on the home. Link Workers also carry out most of their valuable work by visiting people in the home – but if a person has previously said they do not want post-diagnostic support then Link Workers have no authority to cross the threshold.  Care and Repair’s staff enter on a different basis and, once trusted, are able to offer information and advice, and make referrals to other agencies. In Aberdeen many people with dementia and unpaid carers have been supported by the dementia enablement staff to claim benefits they are entitled to, amounting to more than £300,000 to date, which is almost equal to the amount invested in the project by the Trust.

The pilot project, which operates in four areas across Scotland, is being evaluated and an interim report will be available in early spring 2019.

This is not a suggestion that Link Workers should be replaced or removed; we do, in fact, need more of them. However, we also need a broader understanding of the variety of ways in which post-diagnostic support might be provided across the community. The recent statistics show that around 10,500 people newly diagnosed with dementia in Scotland in 2016/17 did not receive the one year’s support to which they were entitled and, of these, around 9,300 were not referred for support at all, for whatever reason. We should reflect on this and consider the value of those organisations that are providing good quality, but less formal, post-diagnostic support.

Integration Joint Boards should consider how they invest in these organisations, which provide excellent value for money. They should look at more than one model for the delivery of post-diagnostic support and explore more deeply the ways in which people with dementia would prefer to receive that support in the first 12 months and beyond. The value of peer support is under-explored. In time, IJBs may wish to consider accreditation for organisations that can provide high quality, highly localised post-diagnostic support in creative ways that help people engage more meaningfully with the offer.

Anna Buchanan, CEO, Life Changes Trust

Anna Buchanan _colour Jan 2018_Fotor

Making Human Rights Ordinary

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By Dr Donald Macaskill, CEO, Scottish Care

This year, we celebrate the 70th anniversary of the establishment of the United Nations Universal Declaration of Human Rights.

The Declaration was the first step in the process of formulating the International Bill of Human Rights. These are the world’s key human rights charters and regulations.

The reason we have our Conventions and laws is that, 70 years ago the world was still waking up from the nightmare of the Second World War. In that obscene period hundreds of thousands of people had their basic rights removed or obliterated – their right to life and health, and to being treated with dignity and as human beings. The women and men who gathered in New York in 1948 to draw up these new laws were not motivated by a desire to develop a complicated legal structure but by the overwhelming passion that humanity could never ever again go back to where it had been in the 1930s and 40s.

Although it’s easy to think that human rights are a complicated legal code or set of rules, they are first and foremost about people. They are in some senses very ordinary.  They are an inherently commonplace set of commitments about how we should live and relate to one another.  They are statements about what it means to be human.

The problem is that we have forgotten the ordinariness of human rights, and we’ve turned them into something which people study, lawyers ponder and politicians debate. We aren’t sure what they are or what they mean.

A few years ago I carried out an exercise in which I asked a group of residents in a care home what they thought of when they heard the words human rights. Their responses were probably reflective of the good and bad press that human rights has wherever you might ask that same question in Scotland today. Some of the responses were negative, others were positive. A not untypical response came from one woman who said – ‘That’s all these rights that stop us from sending terrorists back to their own land.’’ Others were, however, very clear about the relevance of human rights to them. ‘Listen son,’ one older man said. ‘I lost my best friends in a war which was about human rights – though we didn’t use that word then. That’s the world I was fighting for.’ An older woman said to me after some quiet reflection, ‘Human rights – aren’t they about just being human after all.’

It might strike you that human rights aren’t really an issue here in Scotland, that there are very rarely instances where the lives of individuals are under threat, or where they are being abused or oppressed.  But unfortunately there are times when human rights are being restricted or abused right under our own noses, in our own nation and communities.

There are times when, as much by neglect as by design, our human rights are being ignored or downplayed. Such times might include when we grow older, when we develop life limiting conditions or indeed when we move from our own home into hospital, supported accommodation or a care home.

Over the last few years Scotland has led the way in a whole range of efforts to make human rights ordinary, make them the concern of citizens, and in every sense to make them commonplace. One of the really positive developments that has taken place in the last couple of years is the introduction of the National Care Standards. They are a set of practice principles by which every Health and Social Care Service should be delivered. Their emphasis is upon how you, the receiver of care and support, the citizen, should experience and feel about that care. Does it enhance your dignity? Are you being listened to and heard? Are you being treated with respect? Are you able to exercise as much choice and to take as many decisions as you can? These are not always easy questions to answer and not all services are as good as they might be about enabling rights to become real in the delivery of care and support.

Several months ago the Life Changes Trust, in conjunction with Scottish Care, established a £300,000 grant scheme to offer small grants to support care homes to explore how they can better support human rights in the care and support of residents who are living with dementia. Dementia can be a frightening condition, with loss at its heart – loss of identity, loss of confidence, loss of relationships – and it can be all too easy for an individual to lose their sense of being in control, of being able to make choices, of exercising their own human rights. The Making Rights Real project is about turning that on its head. It’s about helping staff in care homes, families and individuals, recognise the role that upholding and advancing human rights can play in supporting and caring for people at very vulnerable points in their lives.

Seven care homes have been selected for the initial phase of this funding. Representing care homes from across Scotland and from very different communities, the projects which have been funded are equally diverse.

What they all have in common is that their work is grounded in human rights. They are about making rights real. They are about making human rights ordinary and commonplace.

People who enter care homes or indeed people in the latter stages of living with dementia do not give up their rights when they grow older. There are still ways in which they continue to contribute to their families and their communities. These exciting projects are about trying to find new, creative and innovative ways in which the human rights of some of our most vulnerable citizens can be better supported and enhanced.

Human rights lie at the heart of quality care and support which puts the individual at the centre of all that happens in a care home. They aren’t about compliance or ticking boxes. They are all about relationships. The work of embedding and realising human rights is about re-orienting the way we care for and support others. How can I get better at hearing from you what it is that you are trying to communicate to me? How can I get better at understanding that you have needs which are unique to you? How can I learn to let you take charge even when you have been diagnosed as having no ‘legal capacity?’ At their best, human rights are a dance, where the carer learns to listen to the rhythm and movement of the music which the person being cared for uniquely creates. This is the stuff of making human rights ordinary and yet, at the same, time extra-ordinary.

I sometimes think we have lost the power to listen deeply to the unique rhythm of every human being, to listen to the story and song which a person has created throughout their living and to hear the direction and movement an individual wants to take. It is much easier for us to think we know what someone needs, to finish their conversation, to direct them where they should be going.

At its best human rights is a new dance, a new language, a new song – not of law and legislation – but of relationship, where the individual and their humanity, is the centre of our caring and community.

The pioneers who created the United Nations Universal Declaration of Human Rights had a dream of creating a world where human rights would become commonplace and ordinary. The Life Changes Trust grant scheme is a remarkable contribution to making Scotland a place where everyone, regardless of place, condition, background or behaviour, has their rights respected and supported. It will be an enjoyable dance of rights made ordinary.

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Dr Donald Macaskill, CEO, Scottish Care

When aspiration becomes reality

This blog is courtesy of Jimmy Paul, a totally awesome young man who was a recipient of a Life Changes Trust Aspirational Award.  

It was September 2016 and I was sifting through my emails at work.  At the time, I was a manager at NHS National Services Scotland.  I saw an email from my former ‘executive coach’ from when I began my career in the health service, as part of the NHS Graduate Management Training Scheme, and I smiled.  She was reaching out to let me know that a Diploma in Executive Coaching was taking place in Scotland through the Academy of Executive Coaches (AoEC).  She felt that I had the passion and skills to thrive on the course, so she wanted me to consider undertaking this Diploma.

I felt absolutely honoured- probably because receiving executive coaching was life changing for me.  It helped me to be more confident, to own my care identity and to realise that my drive and passion lay in the care sector.   It was instrumental in me reaching a place of congruence in my life, and in focusing on my ongoing development as a person.  And she felt that I could learn coaching skills to help others to achieve transformative changes in their lives. What a huge compliment!

I was very interested in this course for all of the above reasons but sadly, I knew that taking part in this Diploma just wasn’t going to happen.

I replied to her saying that I wouldn’t be able to undertake the Diploma because I wasn’t sure that I’d be supported by my employers to complete it.  Within this response was a more significant reason; the diploma would cost several thousands of pounds.  Even though I worked in a decent paying job at the time, there was no way that I’d be able to afford that.

You see, I’m care experienced.  From the age 11, I spent over seven years in foster care where I was born, in east London.  My experience was extremely tumultuous; I had abusive foster carers and a difficult stay in residential care, before making the big move to Scotland, to study at university.

Despite all of those years under the care of the state, I graduated from University with no good relationships with any of my Corporate Parents, and with no savings.  Not only that, but I hadn’t been supported to learn basic skills which I would need for the rest of my life.  Housework, budgeting, navigating scary systems like University enrolment or student finance; the list goes on.  I had to learn these things myself and my flatmates at University will attest to my struggles with budgeting, cooking and messiness (which, to be fair to me, improved a lot over the years!).

Almost everyone I know has had significant support with these life skills from their families.  Same with their rent, mortgage deposits, jobs, their time at university, weddings, etc.

And I want to be clear that I am really, genuinely glad for them.  That’s how it should be.

But I also want to highlight that I didn’t, and won’t ever, get that same support.  I don’t think care experienced young people consistently do. The last thing I want from anyone reading this is pity, but I do think it’s important for people to know that the emotional and financial supports available to most, weren’t (and aren’t) available to me.  And that it can take a long time to build that secure foundation.  I’m still doing it at 27!

That is a pretty long winded way of saying that I didn’t have the money to complete the Diploma in Executive Coaching because everything I do is geared towards building the foundation which I’ve never really had.

Fast forward a few months and I had continued to angle my career towards the care sector.  I had written a bunch of articles in the Guardian, had the pleasure of speaking and volunteering at events for Who Cares? Scotland and I had just accepted a job offer at CELCIS, to start my career in the care sector as a Consultant for Permanence.  The benefits of me receiving executive coaching were being realised in these really key parts of my life!

Being quite active on social media, I started to follow a bunch of twitter accounts who were big in the care sector.  Laura Beveridge, tick.  Lemn Sissay, tick.  Life Changes Trust (LCT), tick.

In following the latter, I stumbled across the Aspirational Awards being promoted on twitter:

“The Aspirational Awards scheme is a young people-led individual grants fund aiming to empower care experienced young people aged 21-26 to think big about their future and transform their lives with a significant grant to help them reach their best potential.” 

How exciting.  I had an opportunity that I could really make count here!  I could learn some skills which would be so relevant to myself and my new employers.

And then it dawned on me.  Perhaps the Aspirational Awards could enable me to complete the Diploma in Executive Coaching?

I emailed the LCT Advisory Group and asked if that idea sounded suitable against their criteria.  Thankfully, I had a very encouraging response which welcomed my application.  So I went for it.

I found the application process to be robust, but not invasive.  Professional, but not hostile.  It felt like it was focussed on building on my strengths throughout, and like it wasn’t trying to trick me.  This enabled me to put a lot of thought and effort into my application and to ensure I was clearly articulating the things that the assessors wanted to hear.  I hit submit…

A month or so later I received a call from one of the LCT Advisory Group members, Rosie.  She was calling with good news – I was successful!  I could tell that she was overjoyed for me which was so, so nice.  She also wanted to talk about the logistics around payment of the bursary, to give me feedback on my application and to welcome my views on the application process.

A couple of weeks later I realised that I had made a really silly mistake in my application – I forgot to add on VAT to the cost of the Diploma, which meant that it would actually cost a fair bit more than I had applied for.  Before beating myself up about this oversight too much, I thought I would email the Funding Manager for the Aspirational Awards to see if the amount I requested could be adjusted to include VAT.

Much to my joy, the whole issue was sorted that same day, with no panic whatsoever.  Apparently, VAT catches a few people out and they had anticipated this happening.  How very professional. And relieving! I received my Aspirational Award by bank transfer all in good time, so I felt truly ready to start the Diploma safe in the knowledge that the finances were all fine.

About a week before the Diploma was due to start, I received a surprise parcel through the post.  It was a pack of goodies from the LCT Advisory Group!  I had a clipboard, some pens and pencils, a notepad and other bits and pieces.  It also included a message of encouragement for the course ahead.  What a lovely, warm surprise and what a great idea.  With wind in my sails, I started the Diploma, knowing that the LCT Advisory Group were there for anything that I could possibly need along the way.

It was a phenomenal course which was so well run.  I learned lots about myself, and about how I can work best with others.  I made nice connections on the course – people who I would say are now friends.  I learned the skills required to be an executive coach, whilst acknowledging that reflection and self-improvement are really important aspects of coaching.

And I’m delighted to share that after a challenging assessment process in July, I found out that I passed!

This Diploma will open many doors for me.  I currently coach two clients, which is great experience.  In the future, I will be able to be an executive coach; perhaps continuing to do this alongside my career or perhaps as a full time thing.  People who know me will know how passionately I feel about the potential for coaching children and young people; there’s a lot of talk about love in the care system just now and to me, love is all about talking about what young people want, and building on their strengths to help them to realise their potential.  Coaching, by definition, should achieve both of these.  And I will champion that.

Completing the Diploma has had a positive impact on my life and my career.  But these impacts aren’t just sitting with me; they’re reverberating across the care sector through me, and will continue to do so as my career takes shape.

I am so unbelievably grateful that I was chosen for an Aspirational Award.  Part of me didn’t feel worthy of applying.  Why? Because I know that I have a fair amount of stability in my life, maybe more than some care experienced adults my age.

But I am so glad I was one of the people chosen because there is no way that I would have had this opportunity otherwise.  And I can say with real confidence that the impact of this Diploma will stretch across the rest of my career and life.

Thank you, LCT.

(Note from Editor: We are all so proud of Jimmy Paul and his achievements, and it has absolutely been our honour to meet and work with him. #happyfunder)

Reading Friends – a new project is coming to life!

This blog is courtesy of Katie Pekacar from the Reading Agency

In June 2016 The Big Lottery Fund awarded The Reading Agency £2.1 million over four years to develop Reading Friends, a new programme designed to reduce loneliness and start conversations with vulnerable and isolated older people through reading.

At the time it seemed almost impossible to imagine that we would be hosting an event in the Library of Birmingham less than one year on, with representatives from six projects ready to launch their reading activities in communities across England, Scotland and Wales. But that is exactly what we did a few weeks ago – and it has been a busy year to get to that point!

The project has been entirely co-produced with older people, including people with dementia, carers and disabled people. At several points we’ve changed our ideas completely as a result of this process – for example, the design of the leaflet, how we describe the programme and even the format of the programme itself, moving from a reading challenge, to a more inclusive befriending model.

We have also developed important partnerships with Literature Wales and Scottish Book Trust, who will help us develop Reading Friends so that it meets the need in those nations. Our partners also include a number of national charities and the network of public libraries across England, Wales and Scotland, to ensure we’re building on existing work and infrastructure.

So last week we all met up and heard from each of our six test projects about their exciting proposals to adapt and deliver Reading Friends to meet the needs in their area over the next 12 months. Although we can’t do justice to all their plans, here are some short examples:

  • In Sheffield, Dementia Action Alliance is working with Sheffield Libraries to start conversations through reading with diverse audiences across the city, including a local Pakistani men’s reading group who are interested in Pakistani heritage and a dementia reading group meeting in an antiques shop
  • In Conwy in Wales, Conwy library service will be working with isolated older farmers, many of whom have Welsh as their first language
  • In Newcastle, Age UK Newcastle and Newcastle Libraries will be working together to bring Reading Friends to an existing befriending service
  • Three different organisations across West Sussex – Age UK Horsham, Dementia Support in Chichester and the Abbeyfield Society in Horsted Keynes – will be trialling a networked approach to Reading Friends with West Sussex Libraries providing the infrastructure support and access to a wide range of digital and assistive technologies
  • In Stirling the library service will be looking at how oral storytelling can be used to engage isolated older people, especially those with Gaelic as a first language
  • Oldham Library service will be using an asset based model to engage deprived and socially isolated communities in Oldham with designing and delivering Reading Friends so that it meets their needs.

The Reading Friends team left the meeting feeling excited by all the brilliant ideas, energy and enthusiasm shown by the test projects. We look forward to continuing the journey of discovering what Reading Friends is and can be together with all our partners and the communities they engage over the next year.

Read more about Reading Friends here: https://readingagency.org.uk/adults/quick-guides/reading-friends/

If you want to find out more about Reading Friends email readingfriends@readingagency.org.uk

Imagining A Brave New World

This blog is courtesy of SallyAnn Kelly, CEO of Aberlour

‘Never give children a chance of imagining that anything exists in isolation. Make it plain from the very beginning that all living is relationship. Show them relationships in the woods, in the fields, in the ponds and streams, in the village and in the country around it. Rub it in.’  Aldous Huxley

5 days away from the ‘day job’ including a residential weekend seemed like a big ask.  5 days of time with people I barely knew.  5 days on systems leadership. My initial thoughts on the invitation from the Life Changes Trust, to be honest, centred on how I might be able to say ‘no I’m just too busy’.  For those of you who know me you will understand that was never actually going to happen, especially after I spoke with Heather Coady who kindly talked me through the thinking behind the course and what she wanted to achieve.  I got curious, very curious, and was enthused by the prospect of bringing 16 people together from across the public, higher education and 3rd sectors to begin to imagine how we might play a role in shaping thinking and improvement in our systems for looked after children.

Day 1 of the course was like many other courses – a process of getting to know each other, building trust and challenging us to step outside of our comfort zones as well as testing the waters for much of what was to come in the residential weekend planned for just a short few weeks ahead.  

That first day, though, differed in one important and profound way, for it was on that day that our true task was set, and set very clearly, by a group of care experienced young people.  Quite simply, their ask was ‘how do we put love and relationships at the heart of the care system?’  Another pointed, but fair, question was ‘what are you actually going to do about making things better?’

Some answers to this challenge, we hoped, lay in the group and we knew that uncovering those potential solutions would involve a lot of introspection, honest conversations and respectful challenge to ourselves and each other.

Our residential weekend took place in the beautiful surroundings of Ardoch House, a picture perfect venue, made more so by the ‘taps aff’ weather we enjoyed.

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Systems leadership encourages curiosity and people to actively notice what is happening around them.  This was a welcome reminder from my perspective to consciously practice those techniques and reflect on how I can normalise them in my daily work.  It was also an opportunity to begin to imagine what our own ‘brave new world’ of care could look like and what bold steps were needed to start us on our journey.

Our time in Ardoch saw us engage in a variety of different learning opportunities, including action learning sets,  and drama workshops.  All of this was aimed at how we can be the best possible version of ourselves.

The work took us into unexplored territory for some, and the approaches encouraged trust and understanding within the group.  It was heartening to notice that the more introverted group members quickly found their voices.   Our time together didn’t always feel like work, though, and there was much fun and laughter amidst the thoughtful reflections and soul searching that went on.  I will be forever thankful for the memories from our last night when members of the group role played their ‘best selves’ in comedic styles. Kate Rocks – your OSCAR is on its way!!

The final day of our residential culminated in a presentation to the young care experienced group when four groups of the participants outlined our learning from the course and set out what our bold steps would be after the residential.  Some great suggestions came through, all of which had children and young people at their very centre. These included how we put children’s rights at the heart of what we do and how we create more meaningful involvement of children and young people in inspection and improvement.

I’ve thought carefully about how I can articulate the learning from all that we have done over the four days we were together and I hope you have a flavour of some of what happened.  My ‘take aways’ from the experience so far are around the deep connections that were made between people in the group.  Whatever our brave new world looks like, one certainty is that the health of that world will be determined by the quality of relationships of those who inhabit it.

Effective change will always be driven by humans and human connection – systems leadership understands this well.  If relationships are not at the heart of the wider system how can we expect them to be at the heart of our face to face engagement with children and young people?  We talked extensively about positive relationships and the part compassion, nurture, empathy and guidance play in our development as humans and how we embed these values in our care system.  We also talked about love and the need to resist the simplification of that as a concept, whilst simultaneously embracing all of the different aspects of that love. It seems to me that we have important choices to make as we move forward with our Review of the Care System.

I am reminded of a powerful quote from Bruce D Perry

Fire can warm or consume, water can quench or drown, wind can caress or cut. And so it is with human relationships: we can both create and destroy, nurture and terrorize, traumatize and heal each other.’

So with one more day to come together formally as systems leaders, I hope that we can continue to strive to be the quenchers, the creators, the nurturers and the healers – in doing all of that we will demonstrate what love is actually about.

This experience will prove, I am sure, to be a transformative one for many of us. It is one The Life Changes Trust should seek to repeat for other sector leaders.

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SallyAnn Kelly, CEO, Aberlour