Are you a carer?





Please watch my short film, which includes families and carers reading from the letters they sent me.






If you would like to share your story or make a persoanl pledge to make a difference please email tommy.whitelaw@alliance-scotland.org.uk

Friday, 6 March 2015

Turning good intentions into purposeful action by Shaun Maher

hi

I am so very honored to share this Guest post from my friend Shaun Maher Strategic Adviser for Person-Centred Care and Improvement

Just over a year ago Shaun invited me to speak for him at the person Centered Scotland Conference
and I have followed his work and on Tiwtter @Shaun4Maher ever since I am very honored to share this post on Making A Difference

we have had so many  amazing pledges on our Make A Difference Tour from so many inspiring people,I hope this helps  with how we can fulfill and how we can all make a difference



The intents and desires of the heart: turning good intentions into purposeful action
It has been both a privilege and inspiring to hear Tommy’s story and listen to his message – life is one big love story in which we all have a role to play.  As caring professionals we are in an especially privileged position often spending time with people at some of the most momentous or traumatic times in their lives.  A
new life entering the world; facing up to serious illness; recovering from an
injury  or perhaps the loss of a cherished parent?  These are the most
memorable, meaningful and often challenging times in people’s lives and in our daily work we have the opportunity to support them, encourage them and walk alongside them.
Yet all too often in the hustle and bustle of a busy day we forget about this unique privilege – the honour of being a visitor in someone’s personal love story.  Not taking the time to find out what really matters to them; a hasty response or a word spoken a little more harshly than it should have been. These lapses pass quickly form our memory in the bustle of the day, but what about the person? Do they forget so readily?  The daughter seeking information about her Mum at a

time of crisis?  The young Dad (or Dad to be) that just wants to be as close as he can to the most precious things in his life? Do they forget so readily?  A careless response by us becomes an experience, even a trauma, carried by that person for the rest of their life.  Amongst many things Tommy’s story reminds us of this truth.
The spirit is willing but the flesh is weak
So how do we take the highs and lows of Tommy’s story and turn them into something positive and lasting?  How do we improve?  It’s been wonderful to see the desire amongst those who listen to Tommy to make a pledge to “make a
difference”.  More than 3000 people have made personal pledges to keep the personhood of all those they interact with foremost.   In one way or another people listening to Tommy have re-connected with their core purpose and recognised that the time has come to take action and make a difference.  The “pledgees” range from support workers to chief nurses, from chief executives of national healthcare systems to porters and domestics – truly reflecting the message that person-centred care is everyone’s business.
The pledges are usually framed by the words “I promise to….”  I will always…”    These are honourable intentions and they are based on the strong values stirred
up in the hearts of those who hear Tommy and Joan’s story. But what do they look like in action? Even with the best will in the world, do they always happen?  I think if we reflect on our own experience we realise that despite our best intentions we are at best patchy – the spirit is willing, but the flesh is weak!
ui

Transforming good intentions into actions and making these behaviours part of our daily routine is probably the single biggest challenge. Consider this example. Tommy asked me to write this blog in November 2014.  With a strong desire in my heart to help I agreed and told him I would have it with him by the end of December.  So what happened?  My intention was good.  I truly meant what I said. But absolutely nothing happened!  The reality is that other things came along and the busy-ness of the day job squeezed the memory of my commitment and the desire to do it out of my consciousness.  I would perhaps remember as I flopped down on the sofa at the end of a busy day and think: “ah I’ll do that
tomorrow…” but as we know, tomorrow never comes!  This is the reality for most of us.  The scale, pace and technicality of the modern world, and especially the health and care system, means that we can’t take it for granted that we will always remember to do the right thing,  to say the right thing and treat people as they should be treated.  We need prompts and reminders to help us.  We need to design a more person-centred system to support the growth of a truly person centred culture.
Purpose, Measures, Method
When we start with a strong sense of purpose we are in a good place.  The
pledges that we have made to Tommy reflect that strong collective purpose we feel.  But to get that purpose into a reality the next thing  we need is measures – DON’T stop reading just because I said measures!!
By starting with purpose measurement is made much easier and much more meaningful.  In this context measurement can be as simpleas observing (or reflecting on) whether the thing you wanted to do actually occured?  Keep a tally or watch what goes on around you for 5 minutes.  For example: “did I always ask every person about the things that are really important to them at this time?” Yes or No?  If not, why not? And what could I do to remind myself to do it?

Your chances of success are much increased if alongside purpose and measures you have an improvement method. There are lots of methods out there – pick one and stick with it!  We have widely used the Model for Improvement (MfI) in Scotland and I think it is probably one of the simplest and most adaptable methods out there.  It starts with three simple questions:
  1. What’s the thing you want to improve? (your aim: how good do you want to be? And by when?)

  2. How will I know I’ve improved? (your measure)
  3. What’s the first step towards making this happen? (your intervention)
Once you’ve answered these three questions the second part of the MfI is to move to action – using a simple framework called the Plan. Do, Study, Act (PDSA) cycle. This structure can  help you  test your idea in a very small way to see if it works.  Try it with one person on one day. Tweak it and try it again.  Try it with two people, and so on.  Once you’ve run a few tests you’ll be amazed at what you learn AND most importantly – your good intentions are turning into actions!

ki

So let’s maintain that strong sense of purpose, but don’t stop there.  Think about what your good intention would look like in practice and then measure whether it actually happens.  Being fallible human beings we inevitably realise we’re not quite as good as we’d like to think we are – there’s always room for improvement!
Then move to the final step and think about the thing you can do to make
yourself more reliable – a prompt in the notes, a “What matters to me” process LIKE THESE, or something particular to your care context.
Take good care of yourself!
This isn’t just about you changing the world. There are all sorts of other things that need to change in the wider system around us, but these things are outside the sphere of influence for most of us. In light of this reality we need to maintain good self-care and set our sights on the long view as we work on our small wins each day.  Sometimes we will have set-backs and this type of work can feel difficult and challenging in the prevailing climate and culture. But don’t lose heart! the overall momentum is in the right direction. Maintain your strong sense of purpose, think about how you will measure your progress and then move to action.
It’s also important to find some like-minded folks so you can support and encourage one another. Start small and begin by designing some prompts and processes into your daily routine that will support you to turn the desires of your heart into your daily reality.
Shaun Maher
Strategic Advisor for Person-Centred Care and Improvement
Health Quality and Strategy Directorate | Scottish Government |
@Shaun4Maher

Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Thursday, 5 March 2015

My mums name was Joan Whitelaw - our 8 short films

Tommy’s speech, providing a carer’s perspective,  on the theme of “No – one ever asked >” highlighted the transformational impact that listening, kindness and understanding made to his journey as a carer, and the importance of looking beyond a person’s diagnosis to engage with them as an individual.

If you would like to access further information about the Collaborative and to view presentations from the latest learning session, please click here.




In 2011 Tommy produced a short film in conjunction with Alzheimer Scotland. The video, which was later shown at the Scottish Parliament, includes families and carers reading from the letters they sent him during his dementia awareness tour of Scotland’s towns and cities. To view the FILM http://tv.enterprisescreen.co.uk/watch?v=347



  Interview for NHS Greater Glasgow and Clyde Patients’ Stories Library
The NHS Greater Glasgow & Clyde's Patients' Stories Library for Hospital Staff aims to use patients’ and carers’ experiences to look at how acute services can be improved.
Tommy shared his story with frontline staff working across NHS Greater Glasgow and Clyde, including the Ward staff that cared for his mother at the Southern General hospital. His film interview was also shown across a number of NHSGGC hospital sites during Carers Week 2013 to help raise awareness amongst staff about the importance of supporting carers in contributing to delivering person centred care. http://www.youtube.com/watch?v=36_Y_3y0yXM

 It’s Ok to Ask for Help!

The It’s Ok to Ask DVD produced by NHS Greater Glasgow & Clyde, Glasgow City Council, The Alliance and Alzheimer Scotland uses carers’ experiences to highlight the benefits of using carer support services in Glasgow, and encourages people to ask for help. Tommy Whitelaw, Alliance Scotland, shares experiences of looking after a partner, parent, relative, friend or neighbour with dementia. Other carers tell us about help they get from support services in Glasgow. FILM http://youtu.be/u2BAxSCcic0




Speaking Care Inspectorate Seminar 

Published on 7 Nov 2013
Tommy recently spoke to our inspection team to talk about his experiences of caring for his mum Joan Whitelaw, who died last year after living with dementia for several years. He spoke about the difficulties he had getting the right services for his mum at the right time and how this led him to take his dementia awareness campaign "On Tour"




















National Dementia Awareness Week 2014 (England) – NHS Employers Nursing Times - my Filmed interview

To mark National Dementia Awareness Week which runs from 18 to 24 May, NHS Employers the Nursing Times are working with the Alzheimer’s Society to promote resources available to NHS organisations and the NHS workforce.
As part of this activity, they have specially commissioned a short video of an interview with Dementia Carer Voices’ very own Tommy Whitelaw.

You can get more information here on NHS Employers 
This video was made to mark this year’s Dementia Awareness week 





You can click on the image Below to preview the  trailer for a longer film which will be launched on 12th December in NHS Ayrshire and Arran University Hospital Ayr lecture theatre.
make a difference film

Full version of Make a difference with the staff nhsaaa 
Nicola Film Still 2



You Can Make a Difference Campaign - case studies -

 Make a Difference case studies 



Dementia Carer Voices began its flagship ‘You Can Make a Difference’ campaign in February of last year, which has gone from strength to strength. The campaign calls upon  health and social care professionals to reflect on the lived experience of people affected by dementia, and identify key messages or actions from their stories that they can take away and apply to their everyday practice to improve outcomes for people living with dementia and their carers.



The campaign has had an extensive outreach programme, engaging with an estimated 18,000 people over the course of 200 talks since February 2014. And will continue across 2015 

This campaign, primarily targeted at health and social care professionals and students, has travelled across the country with the simple message that we can all make a difference, no matter what our role. The highly translatable nature of the campaign has encouraged people from all backgrounds to participate, and has meant that along with professionals and students, MSPs and members of the public have readily pledged their support not just to the project but to the estimated 650,000 unpaid carers in Scotland.

The campaign seeks to empower individuals to make a positive difference in the lives of people living with dementia, their families and carers. It aims to encourage people to do what they can to make their journeys easier, often in simple ways. Perhaps the most common pledge is “I pledge to see the person and not the dementia.” This is an invaluable shift towards a more person centred culture as envisaged by the Quality Strategy[1], which puts the focus back on the person at all times, recognising them as experts in their own lives and shifting the balance of power towards individuals.

Make a Difference: Inspiration and Pledges


The campaign has undertaken an unprecedented level of outreach work, through giving 200 talks, distributing information and guidance, having information stands and hosting an exhibition at the Scottish Parliament. 

The awareness talks involve Project Engagement Lead Tommy Whitelaw sharing his experiences in caring for his late mother, Joan, along with the experiences of carers who have shared their stories with the project in the hopes of improving the experiences of people living with dementia, their families and carers. The campaign provides people with the opportunity to reflect on these personal stories and make their own pledge to make a difference.  

To date, the campaign has gathered over 3000 pledges to make a difference.
The pledges are inspired by the Make a Difference campaign, and are collected in a variety of means. This includes in person at awareness talks, at events such as conferences, via email and online through the blog site and twitter account. Throughout the journey of the campaign, the project team have been keen to learn about what works, and what changes if any are needed for the pledges to be fulfilled. As a result, the team have recommended that the hosting organisation for a talk should keep the pledges and work alongside their colleagues to make a difference. This has been done in a variety of ways by different partners
The project team was pleased to receive each of these pledges, including the pledge from the


 Minister for Sport, Health Improvement and Mental Health Jamie Hepburn MSP:

“I pledge to work with the representative organisations and those who care for people with dementia to improve the support offered for them.  It is vital to listen to those living with dementia and learn from that experience, responding to any concerns and working to improve the lives of those who are carers, and for those they care for.  
This will be a priority for me.”

The campaign has been going from strength to strength as thousands of people have decided to make a difference for people living with dementia and their carers. We have been inspired by how many wonderful individuals like Julie and Rachel have taken this positive message forward and are delighted to share some more examples below  of how these pledges are being put into action.

 


Case Study: NHS Ayrshire and Arran 
                                   
The outreach work undertaken with NHS Ayrshire and Arran has been highly successful, and showcases the way in which carers views and experiences can have a positive and lasting effect on practice. The outreach work began with delivering awareness talks to the Board, and was followed by talks to 500 members of staff within the health board, promoting a greater understanding of the carer journey and encouraging others to make the changes they would like to see in their own professional lives. The pledges were used to inform the National 10 Point Action plan, as set out in Scotland’s National Dementia Strategy[2]. The pledges were aligned with the 10 Key Action Points to showcase how both the pledges and the Action Points can be fulfilled, giving meaning and context to each other. It therefore offered a meaningful opportunity to engage with people, providing information and guidance, and through having such strong commitment from the Board, staff were supported to fulfil their pledges in their role. This offers the opportunity for staff to learn from carers, recognising their expertise and establishing a more equal relationship where aims and outcomes are co-produced. They are committed to working with staff to help them to fulfil their pledge and have launched an anonymous online survey which will ask staff if they have been able to fulfil their pledge, what difference it has made and what barriers they may have faced so as to work together to overcome these.

Speaking of the impact of the campaign, Fiona McQueen, Chief Nursing Officer for Scotland, said:

 “It absolutely lit a passion in me to my commitment and my pledge to make sure that whatever happens in NHS Ayrshire and Arran, our pledges will be met. My pledge as Nurse Director of the Board was to create the conditions and climate to keep things going.”
“I have no doubt that the pledges we’ve made will help keep us absolutely focused on making sure the care for our patients is first class.”

A ‘Make a Difference’ film was launched in December 2014, made in partnership with the ALLIANCE, NHS Ayrshire and Arran and the University of the West of Scotland which shares the journey of the campaign and the impact it has had on the staff. The video is available to view at
www.youtube.com/watch?v=bGLwzE8YAyM.

Allied Health Professionals
The Make a Difference campaign has been taken forward by many individuals who have shared the campaign and actively encouraged others to do so. Shelagh Creegan, Associate AHP Director for Mental Health and Learning Disabilities has been instrumental in taking this campaign forward, sharing it with fellow Allied Health Professionals. She has created a ‘living pledge tree’ that people add their pledges to on red leaves, and transfer these to green leaves once they have been fulfilled. Shelagh is sharing this with colleagues and encouraging them to make their pledge, and indeed to fulfil it.



Abertay University
The University of Abertay has also embedded the ‘You Can Make a Difference’ campaign in their teaching. Emma Lamont and Robin Ion, who are both lecturers in mental health nursing organised a Make a Difference talk for students who will be going out on placements in various locations. The lecturer will then ask the students if they were able to fulfil their pledges, and will look at the potential barriers and how to overcome these in order to provide the best support for the people they work with. The campaign has been shared on twitter, with a daily pledge going out every day for a week to showcase some of the pledges and to inspire others to make a difference.


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Thank you earlier today Speaking Queen Margaret University- Edinburgh


Hi 

With great thanks to Caroline E Gibson Senior Lecturer Division of Nursing, Queen Margaret University, Edinburgh for the kind invite back to speak to Nursing students  and occupational therapists who attend the University earlier today

I travelled home with a smile in my heart feeling inspired reading the pledges from  our next generation of nurses look out on Tuesday for the pledges from today 











I had the great privilege to speak to the students last year before they left for placement ,you can read all the pledges below from last years visit to  Queen Margaret University




photo
I pledge to take every opportunity to listen to patients/families/carers/friends and provide them with a friendly and caring face they can always find comfort – Karen Rennie
I Pledge to listen, to touch, to care and take time to know who you were and help to find out what you need, just to ask!
I pledge to listen, care, give more time for those that need listening too – Hamed Mutahar 
I pledge to care for people to the best of my ability to recognise and talk to those who care for others day in day out and ask what I can do – Chelsea Agate
I pledge to widen my knowledge of dementia in order to provide the best care for someone and to share my knowledge with their carer to help them understand – Gemma Murrie
I pledge to promote the best quality of life for the patient to the best of my ability, remember the patients individual preferences – Shannen Lamb
I pledge to ask how I can help not only in the present but in the future – Emma Hay
I pledge to listen and help as much as I possibly can
I pledge to change people’s lives that I care for, not just for their benefit but for their families
I pledge that during my clinical time as a student nurse that I will provide support and a caring attitude towards families, carers and everyone
I pledge to ask the questions that matter, how are you today and what will you need tomorrow, and to listen to both patient and carers – Stephen McHale
I pledge to remember that people with dementia are people – Gareth Pocock
I pledge to continue to treat people and patients as individuals and try through my work lecturing too instil this in others, future nurses – Lesley McKinlay
I pledge to realise the human behind the illness of dementia – John P.G.McNeill
I pledge to listen to people and find out what they and their family needs and find out who they are – Steph Mudie
I pledge to remember this talk and that my gran with Alzheimer’s and my Grandad, her carer both still need us – Ellen Lamond
I pledge to try and understand people more both carers and sufferers and to try to make them smile and make a difference on battling illness. – Anne Higginson
I pledge to be the one to ask, listen and be there for both people with dementia and their careres – to make a difference! – Erin Wardlaw
I pledge to become the inspirational nurse that Tommy described and always keep this talk in mind – Jasmine Leighton
I pledge to make my patients and their cares smile, like Tommy has done – Catriona Ingram
I pledge to take the time to listen and see people as people and not just dementia sufferers – Hannah Crilly
I pledge to take time to listen to the patient and carers needs and give the best care I can – Fay Stewart 
I pledge to spend my time on placement trying to make people with dementia feel as safe and comfortable as possible – Hanne-Mari Lie Johansen
I pledge to be kind, patient and bring love back into homes.  To listen, to hear, to help.  I pledge to care
I pledge to lend a hand and an ear to all those who cross my path in my future as a nurse.  To always see someone for who they are not what they have – Frances Watson
I pledge I will never “not have enough time as a nurse” My grandma forgot me but I will NEVER forget her. –  Miriam Hunsley
I pledge to ask and more importantly listen to carers, people with dementia and their families.  To improve my understand and ultimately care – Arran Gillis
I pledge to remember the person behind dementia and those who if affects – Dementia doesn’t only affect the sufferer – Jenny Kirkwood 
I pledge I will try to identify socially isolated carers before a crisis arises and offer them the support of the district nursing scheme – Jacqueline Forsyth
I pledge to take an extra few minutes when visiting people to ask how they are and their family are
Remember you to can make a pledge to makeadifference@alliance-scotland.org.uk
Thank you
Dementia Carer Voices

Wednesday, 4 March 2015

Meet The Team - Dementia Carer Voices



Dementia Carer Voices, managed by the Health and Social Care Alliance Scotland (the ALLIANCE) is a Scottish Government Project funded project to 2016 to engage with Health and Social Care professionals and students to promote a fuller understanding of the carer journey, provide a platform where carers can express their views and experiences of caring for a loved one with dementia and to harness the awareness raising activity undertaken by Tommy Whitelaw.
The project:
  • Captures the experiences of carers across Scotland with a view to informing future policy and service provision
  • Raises awareness of the issues around caring for someone with dementia including among health and social care professionals, students and the wider public
  • Highlights the role of carers as natural resources; carers as people with needs; carers as people with independent lives
  • Empowers carers by providing information based on the Charter of Rights and Carers Strategy about caring for someone with dementia

Meet the team:
photo 28
From left to right: Laura McCulloch,  Tommy Whitelaw, Irene Oldfather, Sarah McDermott
Project Engagement Lead Tommy.Whitelaw@alliance-scotland.org.uk
Policy & Information Assistant Sarah.McDermott@alliance-scotland.org.uk
Telephone – 0141 404 0233

Irene
I am currently Director at the ALLIANCE leading on Dementia Carer Voices, Prescription for Excellence, Care Opinion and Active Ageing.  Chairing the Scottish National Dementia Carers Action Network (NDCAN) and a member of the Scottish Government Mental Health Strategy short term working group.  I am a member of the Scottish Government Dementia Forum and Strategy and Implementation Group.
Formerly as a Member of the Scottish Parliament, I set up and chaired the Cross Party Group on Alzheimer’s and Dementia which drafted and agreed the Charter of Rights for People with Dementia and their Carers.   As an MSP for 12 years I actively campaigned on the rights of older people and was the first ever Member of the Scottish Parliament to be nominated and shortlisted for Dod’s 2009 UK Parliamentary Award for services to Older People.  My recent publications include, Digital Technology 2014, In Good Faith Building Compassionate Communities July 2013 and PATH to Active Ageing 2012.
I was educated at Strathclyde University, where I obtained an Honours degree in Politics and a post graduate MSc by Research.
I am currently chair of The European Patients’ Academy on Therapeutic Innovation (EUPATI) UK National Liaison Team (NLT). I have been nominated by parliament to the EESC.  My passion is to improve the lives of people with dementia and their carers and to raise awareness of the importance of rights based approaches to ensure vulnerable people are treated with dignity, compassion and respect.

Laura
As Administrator for Dementia Carer Voices my role involves a wide range of duties from organising events, coordinating diaries and first point of contact for the team. I like that no two days are the same and working as part of a team.
I joined the ALLIANCE in March 2013 from Devro (Scotland) as the Quality Systems – Administrator, the world of how sausage skins were made was all new to me J but that was the stepping stone into the world of Administration.  Before Devro I worked for Hilton Worldwide as a Data Entry Personnel, mainly operating their website, using various operating systems.
My biggest achievements to date would be obtaining my second class honours degree in Business and Management from Caledonian University in 2008 and passing my driving test,  although not sure who was more excited for that one me or my dad as he now gets to teach me all about cars.
Things I like to do are yoga, dressmaking, cooking/baking and spending time with my two beautiful nieces.  My dreams are to learn to knit.

Sarah
I’m the Policy and Information Assistant which means that I get to hear people’s stories and opinions. We then use these to influence policy and practice by sharing these experiences with people working in health and social care, in local communities, Third Sector Organisations and the Scottish Government. It is a real privilege to be given an insight to people’s lives that not everyone has the opportunity to have, and this always makes me want to keep working to make sure that these stories are listened to. There is no substitute for real experiences so please do keep them coming!
I’m the newbie of the team – I started here in June last year and I still love coming into work every day. I’m so glad to be part of a team who I can learn from and doing a job that I really feel is making a difference. I studied Law with French at Glasgow University which I really enjoyed, but realised that I felt more drawn to working in the Third Sector. I have always felt passionate about human rights, and wanted to share what I had learned to make more people aware of what this means, as I think it’s sometimes hard to relate laws and rights to everyday life, but they belong to us all!
In my spare time I play whatever instruments I can get my hands on – this is usually guitar nowadays but I taught the bongos one summer and loved it! I lived in the south of France for a year when I was studying and miss the sunshine so I’m always planning my next trip away somewhere. Next stop Peru!

Tommy
For twenty years I worked in the music industry firstly as a band assistant then Tour Manager and Global Merchandiser from 2007 till 2012.  I was a full time carer for mother Joan who had Vascular Dementia.
Caring for my mum the basis behind my first venture in to the world of awareness raising – the ‘Tommy On Tour’ campaign, which involved collecting life stories and letters from people across Scotland caring for a loved one with dementia. This is something I am passionate about promoting as I build on my previous awareness raising work, as Project Engagement lead of the Health and Social Care ALLIANCE’s Dementia Carer Voices Project.
I have just rediscovered my love for music and I am working hard trying to get fitter, I absolutely love the work I do in many ways a continuation of my previous life with bands but now it’s with and for carers I work with a great team of people and hope we can continue to keep representing the lives and loves stories of the people were so very lucky to meet every day meet.   One of my ambitions is to learn to knit before my team mate Laura.

Dementia Carer Voices engages with Health and Social Care professionals to highlight the importance of a person-centred approach to dementia care, with carers as equal partners. If you would like to organise an event for your staff or colleagues, please contactTommy.Whitelaw@alliance-scotland.org.uk .


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg