Post Diagnostic Support

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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’

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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

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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

Shinkansen!

This post is courtesy of Andy Hyde, and was originally published on the Upstream website.  Upstream works with people affected by dementia to improve mobility services. Andy was part of a Scottish delegation to attend the Alzheimer Disease International (ADI) Conference in Kyoto in April/May 2017.

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After the great evening with the Dementia Friendly Japan Initiative the sharing continued with another gathering a few days later, this time in Tokyo. Thanks to arrangements made by Makoto along with Atsushi Matusbara and Daisuke Sawada at the Foundation for Promoting Personal Mobility and Ecological Transportation (or the “Eco-Mo Foundation”), I was invited to talk at a meeting of transport operators, academics, designers, and representatives from various disability groups.

EcoMo is working on a range of projects to achieve ‘barrier-free’ transport and environmental transport measures that they describe as ‘… activities to create a social environment that is friendly both to humans and to the earth’. Who could argue with that?

The day started with a trip on the Bullet Train or Shinkansen to Tokyo which was a real highlight! A fantastic experience …although it started with confusion as you have to put both tickets (travel ticket and seat reservation) in the machine at the same time – took me a few goes and a hurried conversation to work this out. It was a good reminder that travel is complicated if you don’t know the rules…

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But the trains are smooth, quiet, on schedule, super-frequent, accessible … and very fast.

 I liked the information on each seat – made it clear where you are, what’s nearby and where you’re going!

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Daisuke Sawada met me at Shinagawa, one stop before central Tokyo, and took me to the Kokuyo office which was hosting the event. The rooftop garden office and pool was slightly different to the usual Upstream workshop environment.

I felt very welcomed and an honoured guest. Around 60 participants came along – transportation professionals, academics, people with disabilities, architects, designers … a great mixture of experience and skills.

Atsushi Matsubara started off, presenting results from a survey that EcoMo had carried out to discover the thoughts of people affected by dementia regarding transport and travel services. Around 4.4 million people are living with dementia in Japan. Of the 380 people contacted, 190 responded and some key messages were:

  • 80% had faced a situation where confusion had made travelling difficult
  • a number of people reported that that they often mistakenly travel without money
  • access to public toilets during a journey is a major issue

Some transport operators had responded:

  • 11 reported that they had training materials for staff around disability/dementia, 3 of them had created materials themselves
  • 12 companies reported that they would welcome opportunities to learn more about dementia

There is recognition that there are many passengers travelling with dementia and also that transport for people living in care homes could be more appropriate too. There was talk of accreditation for employees and also the value of recognising their own personal experiences. This was all sounding very familiar and Atsushi shared his experience of witnessing support available for people affected by dementia in the UK… then it was my turn.

And a few minutes later 60 people were doing the Upstream thing, drawing their journeys through Tokyo and talking animatedly with each other about their different experiences … these pictures include some from Dementia Friendly Japan Initiative

After describing the project (with fantastic translation from Taka) we had a Q & A session where participants asked about driving with dementia, the problems with tickets, the colour of ramps that help people get onto buses, the inequalities of travelling with dementia and more. There was particular interest in the Gatwick Airport lanyard, and it was interesting to note that in the ADI conference pack there was a luggage tag that promoted a similar idea – to identify people who might require some assistance, or a seat. This seemed to be more widely known – a few people at the workshop had them tied to their bags and I’d noticed signs about these on Kyoto buses the day before. So it looks like quite a comprehensive approach although I’m not sure what operator training is part of the arrangement… [update – more information about this from the Kyoto Prefecture website]

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There was much more to talk about but we ran out of time. It was another great chance to exchange ideas, to learn from each other and to explore how we might work together. Again, Upstream’s approach was well received. In summarising, Atsushi Matsubara noted that the biggest message for him was the importance of involving people affected by dementia and that this approach was something to work towards in Japan. It made me think about how lucky we are in the UK to have a network of groups and individuals who are willing to give their time, energy and insights to helping projects like Upstream.

It’s easy to talk about collaboration and sharing but it truly felt as though Upstream, the Dementia Friendly Japan Initiative, the EcoMo Foundation, Fujitso laboratories and others are using similar language and have similar aspirations – to work towards inclusive design and service improvement to enable people affected by dementia and others who may need assistance to travel with confidence. We parted as new friends, talking right up to the Shinkansen departure gates, wondering how to turn our animated conversations into collaborative action in the future.

IMG_6873.jpgThanks again to Makoto, Atsushi Matsubara and Daisuke Sawada for their enthusiasm, collaboration and warm welcome!

 With thanks to Andy Hyde.

Hello Kyoto! An evening with the Dementia Friendly Japan Initiative

This post is courtesy of Andy Hyde, and was originally published on the Upstream website.  Upstream works with people affected by dementia to improve mobility services. Andy was part of a Scottish delegation to attend the Alzheimer Disease International (ADI) Conference in Kyoto in April/May 2017.

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Visiting the ADI conference gave me opportunities to reach out to see who I could connect while there and was lucky enough to be introduced to Makoto Okada, Director of the Co-Creative Social Ecosystem Project at Fujitsu Laboratories and also a leading figure in the Dementia Friendly Japan Initiative (DFJI).

We discovered a mutual interest in improving transport for people affected by dementia as DFJI has a special interest group focusing on transport. Makoto was kind enough to organise an evening gathering in Kyoto, coinciding with the conference, bringing together a group of around 30 people to learn about work in Scotland and Japan and to exchange ideas. Participants included occupational therapists, GPs and researchers.

Mr. Matsumoto, manager at Kyoto’s Regional Comprehensive Support Centre spoke about “Planning and managing SOS exercises using the bus in Kyoto.” described his work coordinating local transport providers to assist with people affected by dementia who are becoming lost when travelling around the city. By providing a central service that puts calls out to all transport providers, people are found quickly reducing the anxiety of all concerned. The crucial link here is that they have provided information and training to all parties concerned including the police. We saw a short video showing the system in action.

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Pictures from Dementia Friendly japan on facebook 

Luckily, a number of friends of Upstream were also at the conference – Philly Hare from Innovations in Dementia, James and Maureen McKillop along with Elizabeth from Life Changes Trust and so they were all able to join us for the evening too. So, in addition to me sharing what Upstream has been up to, we heard from Philly about other work in the UK, from Elizabeth from a funder’s perspective and importantly from James about his own experiences of travelling with dementia.

This all made for a lively group discussion as we compared experiences and different project approaches. Perhaps one of the most notable points was the extent to which people affected by dementia are getting involved in projects in the UK. The network of peer support groups such as DEEP groups that we have been lucky to work with is a precious resource that is, as yet, isn’t so established in Japan.

Equally, those of us from the UK noted the coordinated approach that Mr Matsumato had taken in training all the parties concerned. This should be a goal for us – engaging with all the unusual suspects as we sometimes call them – the many different players that contribute to travelling well with dementia.

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Championing the rights of people living with dementia – the VERDe project

This blog was first published on the Mental Health Foundation’s website by Dr Antonis Kousoulis, Assistant Director of Development Programmes at the MHF. 

Antonis Kousoulis

In the past ten years, the landscape has changed significantly and the profile of dementia has risen in policy, research and practice. The Prime Minister’s challenge on dementia 2020 gave a further boost to the interest in dementia care across the country.

Certain organisations, including ourselves at the Mental Health Foundation, have also advocated for a more preventative approach to dementia, especially in relation to the inequalities faced by people living with dementia and the significant co-morbidity with mental ill health. A growing focus on the links between public health and dementia is promising in reflecting how dementia is beginning to be seen through lenses that go beyond the traditional medical model. But we are not there yet.

Progress in dementia has stalled for too long because of a substantial but narrow focus on developing new pharmacological treatments, confusion around the understanding of the wider public of the range of conditions involved under the umbrella term, and lack of systematic application of human rights approaches in the relevant practice and research.

Thus, we are still facing considerable challenges in taking dementia into wider policy spheres, which is why a focus on fundamental values, equality principles and human rights is still urgently needed. We have tried to address this gap with the VERDe project.

The Values, Equalities, Rights and Dementia network (VERDe) has connected people with dementia, carers, practitioners, policy makers, services, organisations and communities across the UK. Through a series of events, VERDe has aimed at increasing awareness and understanding about how values, rights and equalities affect people with dementia and can help improve dementia policy and practice.

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VERDe has enabled productive conversations between experts by background and experts by experience. We have:

  • facilitated the sharing of positive stories of empowerment and hope
  • explored ways to support people in their transitions (e.g. into care homes)
  • recognised that people living with dementia should be treated as persons, not just patients
  • advocated for cross-agency communication and national policies informed by people
  • explained the human rights deficit that exists in dementia and how supported decision-making works.

But our collaboration and network does not stop here. We will keep working with our partners, including Innovations in Dementia and the Dementia Engagement and Empowerment Project to champion the voice of lived experience and help sustain this active community.

Above all, we will strive to remember what one of our dementia activists stated: that people diagnosed with dementia are humans and the people who care for those with dementia are humans too. Therefore, a lot of the issues we want to discuss are, above all, human rights issues. And we know how human rights issues can impact on people’s mental health.

“Taking Local Action”

So, the simplest intervention we can start with is to make sure that the human contact and emotional support for people living with dementia is always there.

VERDe has been coordinated by the Mental Health Foundation, supported by Innovations in Dementia, and funded by the Joseph Rowntree Foundation and the Life Changes Trust (which is funded by the Big Lottery Fund).

Empowerment Grants for Care Experienced Young People

Recently I had a planned stay in hospital. It was an eye opening experience in a number of ways.

I suppose the big thing I noticed was how quickly I lost my usual confidence. In the hospital environment, I had no real expertise, and I was in a vulnerable condition – dependent on others and temporarily unable to do even the most basic tasks for myself.

This was a shock, since I’m used to thinking of myself as a pretty competent person. I haven’t always had masses of confidence but I’ve worked hard, learned from my mistakes, listened to others and probably most importantly, I’ve just about conquered my fear of failure.

One of the things I have learned in this job is that, for care experienced people, even those well into adulthood, lack of confidence is a key issue. It can lead to feelings of self-doubt, of not quite being up to mark, which often never really goes away.

I’ve met people with care experience who are highly successful in their chosen field, inspiring role models, who still battle with feelings of inadequacy.  I recently met a young woman who left her first job after a few months, even although it was a great opportunity, because she was convinced that she would be fired anyway. This was despite the fact that she had all the right qualifications and had secured the job in a highly competitive process.

At the Trust, we’re aware of some of the reasons that can cause care experienced young people to struggle with confidence. I’ve been lucky enough to have supportive, caring adults in my life who have encouraged me. Care experienced young people often don’t have access to those kind of relationships.

Another challenge is that care experienced young people as a group don’t get the same opportunities as their peers to take part in activities like sport, art, drama and music. These informal activities are important in helping us to build social skills. They also provide safe spaces for us to make mistakes and to learn from them.

We want to do what we can to address some of these issues, and our current Empowerment Grants funding opportunity is one approach to supporting care experienced young people to develop their confidence and skills.

Empowerment Grants offer groups and organisations the opportunity to apply for up to £10,000. With this funding, we’re particularly looking to reach care experienced young people who may face barriers due to protected characteristics (e.g. disability; sexual orientation; race; religion and belief; sex), as well as young people who have experience of youth justice or are looked after at home.

Empowerment Grants can support activities for mixed groups which include young people who are not care experienced. We’re asking youth organisations, sports groups and community organisations to think about how they can include care experienced young people in their activities.

By including young people in this way, organisations can help young people to increase their social networks and develop positive relationships with adults which can be so vital to improving their confidence.

My hospital stay was an important experience – a reminder of how easy it is for hard-won confidence to slip away, and an insight into the impact of losing control (albeit temporarily). Care experienced young people tell us repeatedly that they feel important decisions about their lives are made without them, and they can struggle with inconsistent relationships with adults who are not always free to show them they care.

Empowerment Grants offer one route to supporting care experienced young people to grow their confidence, speak up and increase their connections to the wider community. Please take the opportunity to think about what you can do to get involved.  Read more about Empowerment Grants on our website

 

 

 

 

 

Carole Patrick, Programme Manager, Care Experienced Young People Programme