Dementia Carer Voices June-July 2017 Newsletter

Dementia Carer Voices Goes to Parliament

It’s been a busy couple of months for Dementia Carer Voices; we marked What Matters to You? Day 2017, Carers’ Week 2017 and had a five day tour of the Western Isles for Dementia Awareness Week 2017.

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We also launched our latest publication Dementia Carer Voices – Rights and the Carer Voice, with a stand at the Scottish Parliament from 27th to 29th June. This was a chance to celebrate the over 14,000 pledges we have received over the years on our ‘You Can Make a Difference’ campaign and share our new publication with MSPs.

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On Wednesday 28th June, MSPs debated Dementia Carer Voices’ work in a Member’s Business Bill held in the name of James Kelly MSP. You can watch catch up on the debate via this link.

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In addition to our stand and the debate, DCV hosted a lunch on Thursday; a chance to discuss our latest publication and have conversation with people who have made the pledges. The audience consisted of people living with dementia, carers, nurses, student nurses and others. They heard from ALLIANCE Director, Irene Oldfather; UK Engagement Lead, Tommy Whitelaw; NHS Scotland Chief Executive, Paul Gray, and Jackie Baillie MSP.

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What Matters to You Day 2017 – #WMTY17

The 6th June was ‘What Matters to You?’ Day 2017 – a chance to flip the conversation from ‘What’s the matter with you?’ to ‘What matters to you?’ Individuals and organisations across Scotland joined in and Dementia Carer Voices marked the day with a series of activities and posts.

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This included a conversation between Tommy and Shona Robison MSP, Cabinet Secretary for Health and Sport, about what matters to her.

View a summary of all our activity for the day itself here.

Scotland’s National Dementia Strategy 2017-2020 Launched

On Wednesday 27th June, the same day as our debate on dementia in Parliament, the Third National Dementia Strategy was launched. Read Dementia Carer Voices response to the strategy here.

In general terms, the National Dementia Strategy set out a direction of travel highlighted around:

  • continuing emphasis on early diagnosis;
  • a more flexible approach around post diagnostic support;
  • and emphasis on ensuring appropriate palliative and end of life care

 

Carers Week 2017 with Dementia Carer Voices

Dementia Carer Voices marked Carers Week 2017 with a series of events and activities. Carers Week is an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families and communities throughout the UK. This year it was held 12th to 18th June.

ALLIANCE Director, Irene Oldfather, spoke at a British Society of Gerontology Scotland event hosted at Glasgow Caledonian University during Carers Week 2017. Irene spoke about how to ensure person centred in the integrated health and social care environment to support carers in particular.

Tommy was privileged to host and speak at the Carers Trust for Cambridgeshire and Peterborough “Pride in Our Carers” Awards 2017 on Tuesday. You can read the latest news piece from Cambridgeshire and Peterborough NHS Trust.

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Policy and Information Intern, William Griffiths, wrote a guest piece to mark Carer’s Week on the Health and Social Care Academy’s blog.

‘You can make a difference’ tour dates

Big thanks to Richard Williams, Fellow Practice Education Lecturer, the staff and students at Edge Hill University for kindly inviting Tommy to give 3 talks across all years and modules to around 1100 students on 26 May 2017.

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The day was incredible and the care given by all to Tommy was wonderful.

We are proud to share the 406 pledges below from the inspiring Edge Hill Future Nurses. Put the kettle on and enjoy the wonderful words here.

 

Also, many thanks to Maisey Dear and Vanessa McLean, Dementia Care Nursing Specialists at Colchester Hospital for inviting Tommy back to give two more talks and to unveil a piece of artwork that has been designed to raise awareness called The “Dementia Care Pledge Tree” at Colchester General Hospital on Thursday 6 July.

 

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The tree, which is approximately 8ft tall, has been painted by Lara Wallington, aged 16, of Highwoods, an A-level Student at Colchester Sixth Form College. Colchester Daily Gazette also covered the story and you can read it here.

Guest blogs

Now it’s time to act – Following on from the #WMTY17 Day we received a poignant guest blog today from our colleague Marianne Brennan, Partnership and Practice Programme Development Officer, Self Management Team.

Letter from America…. – We also received a guest blog from Dr Claire L Copeland, Consultant Physician in Care of the Elderly and Stroke Medicine at Forth Valley Royal Hospital. She recently spoke at a conference on delirium in Nashville, Tennessee. Read her story here and follow her on Twitter at @Sparklystar55

Future DCV events

Keep up-to-date with events DCV are attending over the next month. To find out more, see our “Get Involved” page over on our blog.

Connect with Dementia Carer Voices

There are many ways to connect with Dementia Carer Voices. Our Facebook page is reaching more and more people, we can be reached on Twitter or through email at dementiacarervoices@alliance-scotland.org.uk. Do get in touch with any questions about our upcoming talks or events, if you want to share a blog with us or just to say hi.

Submit Nominations to the Self Management Awards 2017!

Self management is so important to the lives of people living with long term conditions and their carers. To recognise the amazing individuals and organisations pioneering this work our colleagues in the Self Management team are Celebrating Change during Self Management Week 2017 (2nd-6th October).

Submitting a nomination to the Self Management Awards is your opportunity to celebrate people and organisations really making a difference. Join us at the wonderful award ceremony in the Scottish Parliament demonstrating to Holyrood, and beyond, just what working in this way means to the people of Scotland.

We are now accepting nominations for the following awards:

  • Self Management Project of the Year (this award will be open to a public vote when the judges have finalised a shortlist)
  • The Changemaker
  • Self Management Resource of the Year
  • Self Management Champion of the Year
  • Shazia Akhtar Individual Transformational Story of the Year
  • Integration Partnership of the Year

Read more about the criteria for each award on the website, then… Download your nomination form here!

 

Posted in Events

‘Dementia prevention, intervention, and care’ – New Dementia Research

Here is the latest blog piece from ALLIANCE Director, Irene Oldfather, reflecting on the latest research on dementia.

Irene Head and Shoulders

Recent findings from Alzheimer’s Association International published today in the Lancet present an interesting picture of how we can reduce risk factors for 1 in 3 cases of dementia.

The study makes interesting reading and notes important factors around lifestyle choices that can help us all to live better healthier lives.

Increasing levels of physical activity and reducing smoking makes sense not not in terms of dementia but  in terms of overall health and well being.

Failure to complete secondary education was a major risk factor, and the authors suggest that individuals who continue to learn throughout life are likely to build additional brain reserves.

Another major risk factor is hearing loss in middle age – the researchers say this can deny people a cognitively rich environment and lead to social isolation and depression, which are among other potentially modifiable risk factors for dementia.

Another key message from the report is that what is good for the heart is good for the brain.

It appears therefore that physical actIvity,  lifelong learning and brain stimulation can play a role in reducing risk. Opportunities in later life to undertake such activity can also promote reducing social isolation and promote general well being.

Not all dementia risk is modifiable and it is important that vulnerable people and their families don’t feel that within this tragedy, they have to apportion blame.

As yet there is no magic cure for dementia, no one pill which will reverse the process – research must be funded to continue to find that solution. In the interim therapeutic interventions can without doubt improve quality of life whether that be in the Care Home or the community. Too often we see open spaces around care homes and dementia units with no one in them. Access to fresh air should be a basic right of all people living with dementia.

Connecting our communities, tolerance, kindness and compassion are vital to all of us, so how much more important to those who are isolated through dementia, geography, fragility,  other illness or just family circumstances.

Inclusive communities where people are welcomed and valued no matter how advanced their dementia is, is no substitute for a cure but can be vital stepping stones on the way to understanding and improving quality of life for people living with dementia today and for making us a more rounded and inclusive society.

Too often in the past, and to our ignorance and shame, we have kept people who don’t confine to our societal norms behind closed doors in the shadows, clouded in stigma.

It’s time to open our doors and facilitate and support families living with mid and advanced dementia to step out of the shadows as much as they are able and to participate in life in our towns, our churches, our supermarkets, our cafes -to be integrated back into our communities,  then we will be truly dementia friendly.

Posted in Events

Irene Oldfather: We owe it to people with dementia in Scotland to work together to get on and do it

The ALLIANCE Director, Irene Oldfather, wrote a piece in the Scotsman last week to go alongside our latest publication and our events at the Scottish Parliament. See below for full text of the article.

In October 2009 a Members’ Business Motion in the Scottish Parliament called for a rights based approach to the care and support of people living with dementia, in the form of a Charter of Rights.

The charter was the result of roadshows held across Scotland organised by Alzheimer Scotland which asked people living with dementia about the challenges which they faced in managing their illness and trying to live independent lives in their own communities.

A working group led by a small team in the Scottish Human Rights Commissioner’s office compiled the charter based on the United Nations PANEL approach which promotes participation, accountability, non-discrimination, and empowerment. It was agreed to by all political parties and it seemed like a milestone, “a great leap forwards” that would forever ensure that people living with dementia would be treated with dignity and respect.

Some eight years later as the Scottish Parliament revisits a similar business motion on the work of the Health and Social Care Alliance Scotland (the ALLIANCE) Dementia Carer Voices programme we are entitled to ask, has sufficient progress been made?

In fairness, in the intervening period, much has been achieved. The Scottish Government has sought to narrow the gap between a highly developed national policy framework, through successive dementia strategies and the new health and social care delivery plan, and the practice of dementia support in communities.

A raft of initiatives such as Dementia Ambassadors, Champions and Nurse Consultants have been created to encourage change.

Over a number of years, the Dementia Carer Voices project has developed a social movement for change through the work of former carer Tommy Whitelaw, including a call to action to pledge to make a difference, reaching out to 80,000 people across the UK with in excess of 14,000 pledging to do one thing that will make a difference to the lives of people living with dementia and their families.

Supported self-management, embedded in the ALLIANCE core activities since 2008, enables shared and supported decision making and people to be equal partners in their care, has long become the language and principles that lead much of the Scottish Government’s work.

The idea of people not just at the heart of their own health and wellbeing, but being involved in the direction and design of policy and services is now an established way in which we do things. That ownership also encourages people with long-term conditions and life-limiting illnesses to take control and self manage rather than be passive recipients.

However, it would be disingenuous to pretend that everything is hunky-dory. There is a way to go with a system that is inconsistent in delivery and as the National Clinical Strategy recognises has huge variations and gaps. Meanwhile, there is a less than rosy picture of some services for older people.

An analysis of pledges made by nursing staff and students across the UK identified the main barriers to fulfilling a pledge to improve the care of people with dementia (where barriers were cited – many said nothing would stop them) as time, resource and staffing.

Given the demographics of ageing and dementia, we need to find ways to do things differently. The application of the landmark post-diagnostic support one-year guarantee was too rigid. It took too long to reassess the policy. It is really important with terminal illnesses and people who are by definition short of time that we are able to assemble the evidence quickly and listen to what people are telling us. There is nothing wrong with trying something and failing, the problem lies when we don’t recognise that we’ve got it wrong. Then we can’t move forward. As we await the publication of the third dementia strategy, we will hopefully see the promotion of a system that is needs based rather than time and task oriented. True person-centred care is about constructive conversations where we listen to people with lived experience within a rights based framework.

I genuinely believe that in Scotland there is a willingness to work across the political divide in the interests of making the lives of people living with dementia better. There remains much to do. We owe it to people with dementia across Scotland to work together to get on and do it.

Posted in Events

The Dudley Group NHS Trust Pledge to Make a Difference

Big thanks to Paul Bytheway – Chief Operating Officer and Mandy Aworinde – Clinical Lead for Mental Health at the Dudley Group NHS Trust @DudleyGroupNHS for inviting Tommy to give two talks and meet everyone on 7 July 2017.

Paul and Tommy met at an event earlier this year where Paul pledged to invite Tommy to the trust and that pledge was fulfilled.

Special thanks to Mandy, Nicola, Lauryn and all the team for looking after Tommy with such kindness.

It’s was another wonderful day with people so passionate about caring as you will see by the wonderful pledges from the day below.

We look forward to returning meeting more people, launching some pledge trees and working together to make a difference.

 

From left to right –

Many Aworinde – Clinical Lead for Mental Health

Paul Bytheway – Chief Operating Officer

Andrea Boyt – Clinical Support Worker for Mental Health

Gaynor Hill – Charge Nurse for Older People Mental Health

Emma Hammond – Lead Nurse for Mental Health

Nichola Stacey – Matron Secretary

Thank you from all The DCV Team for a wonderful day full of kindness, care and for the inspiring pledges below.

I pledge to always ask what can I do to help you today. Always smile.

 

My pledge is to carry on caring, giving time to others, to support not just the person but everyone family, friends that I already to.

Dawn Saunders – NHS Patient Wellbeing Worker

 

My pledge is to continue to care for my patients with dementia or not to carry on doing my job, as well as I possibly can today and for the rest of my life and to raise as much awareness on dementia as possible.

Donna Jones – Patient Wellbeing Worker

 

I pledge to look for the person behind the illness and to find out what matters to them.

Robyn Misters – CSW Russell’s Hall

 

I pledge to ease the loneliness.

Victoria Newman – Clinical Support Worker

 

I pledge to try to help a carer on the end of a phone to feel more supported.

Karen Meacham – Community Care Supervisor

 

I pledge to see the real person and the love story.

Cheryl Robbins – Adult Social Care

 

I pledge to always ask what matters to the people I support (those with a learning disability and their carers).

Jaqui Howells – Learning Disability Liaison Nurse

 

I pledge to find out about peoples love stories and to help them remember them.

Pam Smith – Deputy Chief Nurse

 

I will remember that eve a short conversation can have an effect on someone’s life.

Emily Hemming – Assistant Psychologist

 

I will never stop caring “ever”.

Jennifer Bree – Assistant Chief Nurse

 

I pledge to spend more time listening to my patient and once I’m done helping to spend more time with them to just listen to them and be somebody to support them.

Luke Kerrawn – ACCT

 

I pledge to always be kind, always care and always listen.

Karen Hanson – Wellbeing Worker

 

I pledge to be more like you Tommy.

Lyn Faulks – Ward Clerk

 

My pledge is to always be caring and friendly. I will ask, listen and do.

Cat Whorton – Lead Nurse

 

I pledge to raise awareness that an early diagnosis of dementia is beneficial to both patient and carers.

Richard Gee – GP Engagement Lead

 

I pledge to continue to support families living with a loved one with dementia at home. Raise awareness and early diagnosis.

Julia Halpin – Dementia Specialist Nurse

 

I pledge as a student studying a degree in mental health nursing, continue to research and get an understanding in dementia.

Susan Adams – Stafford University

 

I pledge for carers to never feel alone or frightened.

Edwina Gauld – Team Lead

 

I pledge to continue to learn and add to my knowledge about dementia from patients and their families.

Simon Ticker – Patient Wellbeing Worker

 

I pledge to make as much difference to as many people I meet where possible.

Mandy Jackson – NHS Acute Confusion Care Team

 

I pledge to thank the carers who looked after my Granny Joan in her last 1000 days.

Rachel Hubball – The Dudley Group

 

I pledge to always look forward to seeing dad.

Nick Parry – Biomed Scientist

 

I pledge to always remain open and warm and never forget the importance of understanding and caring.

 

I pledge to encourage others to walk in someone else’s shoes. To continue to encourage “not using poor technology and see the person not just the dementia”.

Gillian Davies – Admin/Support Worker

 

I pledge to strive to spend that little bit of extra time with each patient and family member.

Victoria Meaden – Sister RHH

 

I pledge to take time to listen.

Carole Freeman – DGOH CSW

 

I promise to find time for my patients and make it a priority to understand what is important to them.

Lewis Tyson – Student Nurse

 

I will remember person as a name who they are not for the dementia.

Shariila Bi – HAT Social Worker

 

I pledge to be a kind, understanding ear. Always smile and listen. To listen, hear and understand who and what matters. To listen to their story and promote this amongst colleague’s ad community.

Mel Humphreys – Sister/Shift Lead

 

I pledge to remember to ask who they are and who matters to them.

Lyn Sheldon – Care Co-Ordinator

 

I pledge to never walk past.

Karen Lewis

 

My pledge is to look past the dementia. Treat patients as humans as well as families.

Ruth Panesar – Student Nurses

 

I pledge to help provide individualised care for people with dementia and those important to them, at end of life.

Sadie Tighe – Palliative Care

 

I pledge to remember the person behind the disease.

 

 

Posted in "You Can Make a Difference" Pledges

Dementia Carer Voices’ new publication launched

Dementia Carer Voices launched our latest report on the 27th June and brought the printed version to the Scottish Parliament for discussion. It was great to see so many friends and supporters of the project come along to celebrate the new publication.

Please see this link for the online version of Dementia Carer Voices – Rights and the Carer Voice.

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Dementia Carer Voices brought the voice of 14,000 health and social care staff and students to life in our new publication on the pledges received on our flagship ‘You Can Make a Difference’ campaign.

The ‘You Can Make a Difference’ campaign has involved an extensive outreach programme of over 600 talks delivered to health and social care professionals and students throughout the country, to engage with individuals at every stage of their career.

This has resulted in over 14,000 pledges being made by practitioners and students to improve experiences for caring for individuals. These pledges are often small changes, but can make a crucial difference for people who are at their most vulnerable. Some pledges that have been gathered include:

  • “I pledge to make a difference as the future nurse to listen to the carers and patient. To give them the best support and care they needed and not to make them ever feel isolated.”  (Student nurse)
  • “I pledge that I will see the person with dementia as an individual who has lived their life from childhood, to falling in love, to having a family and growing old, to understand their story and how they would like to be cared for.” (Nurse)

 

You can view or download the publication at the link here

http://www.alliance-scotland.org.uk/download/library/lib_595a42624d705/

The campaign has showcased the impact of personal stories; the recognition that all of us are individuals and not simply ‘patients’ or ‘staff members’, and that each of us has the ability to make things better for other people, both in our personal and professional lives. The DCV exhibition will showcase the ‘You Can Make a Difference’ campaign and crucially the pledges that have been gathered to date, along with the journey that the people who have made them have been on.

 

Posted in Events

Letter from America….

We are kicking off the week with a guest blog from Dr Claire L Copeland, Consultant Physician in Care of the Elderly and Stroke Medicine at Forth Valley Royal Hospital.  You can follow Claire on Twitter at @Sparklystar55 Lets see what Claire has to tell us….

 

American Delirium Association Conference, 4 – 6th June 2017

Nashville

This was my first American Delirium Association conference (#ADS2017). Making it more exciting was the prospect of visiting Nashville, the home of country music (I’m a huge Garth Brooks fan but don’t tell anyone……!)  A pre conference educational workshop was held on the Sunday. The basics of delirium education were gone over from its definition to what causes it.

Dr Heidi Smith spoke about how delirium ‘is often invisible’ in the sleepy person. This was later described as ‘pathological sleepiness’. You see the concept of describing a person as ‘a bit quiet’ or ‘not quite themselves’ is woefully inadequate. Many fail to appreciate that brain neurones (cells) are slowly dying.

Now imagine that same person has dementia. You want that person to hold on to as much brain function for as long as possible right? Well, the longer a delirium goes undetected the more harm it can do. The less likely they are to come back to their normal pre delirious selves. We already know that delirium accelerates cognitive decline and yet we remain poor at recognising and treating it.

Heidi went on to describe how the delirium assessment is a bit like ‘knocking on the door’ of the person’s brain. Are the lights on or off?

We learned that all kinds of things go wrong inside the house (or brain) of the delirious person. The brain is wonderfully complex however when the fog of delirium sets in it all goes a bit haywire. There can be too much of certain brain chemicals making it a bit excitable when it wants to be calm. It also doesn’t have enough of the calming chemicals to counteract this effect either.

With this in mind is becomes obvious why we should be describing the person with delirium as suffering acute brain dysfunction and not as often happens as ‘pleasantly confused’.

There is nothing pleasant about delirium.

While much of the conference focused on older people it is important to remember that delirium can affect people of any age. We were shown videos of a toddler with a delirium (the sleepy, hypoactive kind). We were also made aware of the shocking statistic that only ~40% of people (mean age 59yrs) get back to work after an intensive care admission complicated by delirium.

The talk that had the biggest impact on me came from a older gentleman who described his experience of hospital acquired delirium. When asked what could we, as healthcare professionals, do better? His answer was simple ‘come into my world’.

 That for me summed up the conference. For 3 days we came together from all corners of the world to try to better understand what causes delirium and what we could do to make it better.

Some of this is a need for more research.

Much of it is simple awareness and education. This education is not just for healthcare professionals either. Families and carers of those with dementia need to know about delirium as soon as they are told of the diagnosis. We need to involve them in sharing their experience, to be able to enter their world and ensure that we are doing everything we can to make it better.

We need every healthcare institution to have a robust training and education program for its staff. We also need all our undergraduate medical, nursing and AHP schools to embed delirium into their curriculum.

You too can make a difference. World Delirium Day (#WDAD2018) is happening on14th March 2018 and I’d encourage every one of you to get involved. Share your experience and ideas by emailing or tweeting me. Ask your place of work what they’re doing to raise awareness of delirium.

Let’s think delirium!

Posted in 'Viewpoint' Blog Posts

Colchester Hospital Unveils Pledge Tree

Massive thanks to Maisey Dear and Vanessa McLean, Dementia Care Nursing Specialists at Colchester Hospital for inviting Tommy back to give two more talks and to unveil a piece of artwork that has been designed to raise awareness called The “Dementia Care Pledge Tree” at Colchester General Hospital on Thursday 6 July.

You can read the pledges here from our previous visits.

The first talk was with the hospital dementia champions and then to doctors with staff from many areas and roles then they were invited to add paper leaves on where they wrote a pledge about what they will do to make a difference to the lives of people with dementia and their carers.

 

The tree, which is approximately 8ft tall, has been painted by Lara Wallington, aged 16, of Highwoods, an A-level Student at Colchester Sixth Form College.

She became involved because she is a friend of Rebecca Edwardson, daughter of Helen Chase, the Trust’s Head of Safeguarding, and came into the hospital in her own time after college for two weeks to work on the project.

Tommy was so honoured to launch the tree Outside Surgical Assessment Unit (SAU), Ground Floor, Main Building, Colchester General Hospital, and we are really looking forward to following the story of the people and pledges.

 

View the film of the unveiling below:

 

Colchester Daily Gazette also covered the story and you can read it here.

Thank you to all the amazing people at Colchester Hospital for the passion, dedication and pledge tree from all the team at DCV, we are honoured to have been part of such a truly inspiring day.

 

Posted in "You Can Make a Difference" Pledges, News