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 May 2016

Celebrating People and 10,000 Pledges to Make a Difference


I thought I might share a wee update on our ‘Make a Difference’ Campaign and tour as we reach 10,000 Personal Pledges to make a difference

(This number will higher as pledges are added also after we visit)


We have engaged with over 50,000 people in person over the last 2 years at over 450 talks and events , collecting pledges from health and social care professionals and we’d like to share some of their inspiring words, and help celebrate the work they do to putting pledges in to practice make a difference


We are very inspired by the different ways Individuals, Hospitals Universities Care Homes and Care at home teams have been putting pledges in to practice

We have a short film to celebrate people and pledges 

Dementia Carer Voices - The story so far https://youtu.be/HQNgbIVimOs

You can read every pledge here at https://dementiacarervoices.wordpress.com/pledges/

NHS Ayrshire and Arran made a film in partnership with the ALLIANCE 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.


Read our case studies of how hospitals, universities and care homes are putting people at the heart of their work at: https://dementiacarervoices.wordpress.com/case-studies/  


Thank you to all who have pledged and supported the campaign to date .We look forward to more meeting more people  who are making a difference for people living with dementia, Families and carers 

Thank you from all the  Team 

Dementia Carer Voices


Tommy














Tommy Whitelaw, BCAh
Project Engagement Lead
Dementia Carers Voices
Health and Social Care Alliance Scotland (the ALLIANCE)
349 Bath Street
Glasgow G2 4AA
Tel: 0141 404 0233
Mobile: 07921395712
Charity No. SC 037475 
Company No. 307731
dementiacarervoices.wordpress.com
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

Tuesday, 3 May 2016

My Name is Tommy,I cared for my wonderful mum Joan

My name is Tommy Whitelaw, and for five years I was a full-time carer for my mum Joan, up until she sadly passed away in September 2012.
At the time my Mum was diagnosed with vascular dementia, I looked at her and thought to myself “it’ll be okay, we’ll get through this.” What I soon learned as her carer, was that dementia was an unpredictable illness which brought many challenges and forced us to adapt to ever-changing routines. Many days we would wake up to discover that everything we had grown accustomed to have suddenly changed again.I wondered whether the struggles I faced were mine and mine alone, and how other carers who had been through the same journey as I was embarking on, had managed to cope. This was the basis behind my first venture in to the world of awareness raising – the‘Tommy On Tour’ campaign, which involved collecting life story letters from people across Scotland caring for a loved one with dementia.
The hundreds of letters I received let me know that the challenges I faced were far from unique to my own situation and I have to say meeting and speaking to others in the same situation was one of the most beneficial things I could have done.
An issue that struck me during my journey caring for my mum was the lack of awareness and understanding of dementia and the way in which we perceive this illness as a wider society.  My door was always open but no one walked through it, people didn’t come to visit us anymore and I truly believe that was down to the stigma surrounding the illness.
Everyone affected by dementia has a unique story to tell and by sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.
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.
The project provides a platform upon which carers can express their views and experiences of caring for a loved one living with dementia, with a view to raising awareness among health and social care professionals, and wider society of its impact on families and the importance of empowering carers in carrying out this difficult but vital role.
A key focus of my talks through the project is to highlight the impact that inspirational health and social care professionals can make to the journeys of carers across Scotland. People who appreciate and understand the unique challenges that dementia brings can be there to prop you up, and I absolutely believe as a carer if I was propped up a little bit with the right help and support, I could have given my Mum the best care and support in the world.
The experience of caring for my Mum undoubtedly brought great challenges, stress, isolation and sadness, but it was a role carried out through love and we enjoyed many touching moments of joy and satisfaction. Those special moments live long in my memory, and gave me a real boost of strength to get through the difficult times, and continue to do so now.
Dementia Carer Voices pledge background
Dementia Carer Voices has now gathered over 4500 personal pledges as part of the “You Can Make a Difference” campaign. The campaign encourages people to listen to the experiences of people who have cared for a loved one with dementia and to think how they can make a positive difference in people’s lives. The team are delighted to have gotten such a strong response, and would like to take this opportunity to reflect on our journey up until now and how we have gotten to this point.
A fundamental aspect of the campaign has been about involvement. Throughout the UK tour, we have engaged with many thousands of  health and social care professionals, students, MSPs and members of the public, and have noticed a distinct increase in the number of pledges we have received when people are encouraged and supported to do so by colleagues and friends. We would therefore like to ask you to share this campaign, to encourage people you know to get involved and make a pledge to make a difference in the lives of people who have dementia, their families and carers. Through our own dedicated blog site, twitter account and website, the campaign is easily shared, and links people to a range of information.
Pledges can be submitted via email, twitter @DementiaCarerVo or on the blog site, and are also collected at every talk. We would very much appreciate it if you would promote this campaign; the talks and our films and encourage people to reflect on what they can do and how they can make a difference.
Resources
Dementia Carer Voices took the Make a Difference campaign to the Scottish Parliament in October 2014. View the pledges from First Minister Nicola Sturgeon and Paul Gray, DG Health and Social Care and Chief Executive, NHSScotland.
NHS Ayrshire & Arran and the University of West Scotland  (UWS)  were key partners in the ‘#make a difference’ pledges and dementia awareness campaign.  This video includes interviews with First Minister Nicola Sturgeon and Paul Gray, DG Health and Social Care and Chief Executive, NHSScotland, Fiona McQueen (Executive Nurse Director NHS Scotland), Professor Paul Martin (Deputy Principal UWS), Derek T Barron (Associate Nurse Director – Lead Nurse North Ayrshire Health and Social Care Partnership), Janice McAlister (Alzheimer Scotland Dementia Nurse Consultant), Lynn McLaughlin (Senior Charge Nurse).
Newsletter
View the May/June 2015 Dementia Carer Voices Newsletter.  Subscribe to the newslettermailing list.





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

My mums name was Joan ,my Mum Had Dementia - our Story 9 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

Dementia Carer Voices where proud to tour with Healthwatch across Essex back in October 2015.  You can view the blog post and pledges from the few days here. 
Thanks to every one of you who attended each event and the @HWEssex team for arranging the few days.  Below is a new film about the tour with some of the Nurses who attended sharing their pledges made to the Make a Difference Campaign each day. 
HWlarge




 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




'On the Couch' with Tommy Whitelaw filmed interview NHS Scotland Conference June 2015





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



Monday, 2 May 2016

The kindness of people-most of whom I have never met, thank you


Dementia and caring brings many struggles and of course moments of joy, love and inspiration. My mum inspired me many times and amazingly at the most crucial moments when I was really struggling to cope and understand. That kind of sums it up, there is my wee mum facing all that dementia brought and over the last months nearing end of life, but always able to comfort her son and get him through it.

 As a campaigner I am trying to raise awareness, understanding and empower people to help prevent families reaching crisis situations. All too often on our journey we were lost, lonely and isolated but looking back my heart can sometime smile and this is thanks to the kindness of the special people we dealt with.

Like the District Nurse who put her arm around me one day when I was in tears and said “You’re doing ok Tom you’re doing ok.” I can’t tell you how much I needed someone to do that as I was scared of what was happening and scared of letting my mum down.

Or the Nurse ( speach & Language therapist ) who was involved in the last months of my mums life when she could no longer swallow and had been in hospital for a few days. On her returning home I was struggling to get my mum to eat or take fluids and the nurse said call me if you have any problems, so I did and she took the time to pass by after work to sit down to show me again what to do, holding mum’s hand and putting us both at ease.

There is an important lesson here, its people who change lives through their help, kindness and understanding and it is important to celebrate this so that others can take notice and follow.  A big part of my talks is celebrating the people who made our experience better, even if was just for a day. Then there are the amazing carers and families who I have met out and about or online on Twitter or Facebook who have shared their life stories and are the inspiration behind my campaign.

Over and above policies, strategies or reports it’s people who have the potential to transform people’s lives throughout what can be a very difficult and lonely journey. I still smile to think of the special people who helped me and the thousands out there helping others in the same manner, most of whom I have never met.

Tommy





Very Honoured to have a portrait of Mum in Takes a Village, A newexhibition across Scotland

Hi
I Am so very honoured to have a portrait of my mum and dad in this exhibition across. Scotland 


A Preview of It Takes a Village, a new exhibition by Colin Gray and the Scottish Partnership for Palliative Care (SPPC).
This powerful and challenging new work features a series of portraits by Colin Gray exploring the concept that ‘if it takes a village’ to raise a child it also takes a range of people to look after someone who is dying and their family. Based on interviews by the SPPC, the exhibition shares personal insights and experiences from the various perspectives of people who have cared for someone who’s dying or their family.
The Preview marks the beginning of Death Awareness Week Scotland, which aims to raise awareness of the positive benefits of planning ahead for death and dying. It is part of the Scottish Partnership for Palliative Care’s ongoing Good Life, Good Death, Good Grief work to promote more openness about death, dying and bereavement in Scotland.
Full press release can be downloaded here.
List of Venues and Dates of Exhibitions




What Matters to You ? - Who Matters to you ? - call for stories for #wmty16

                                
                                
Leading up to, and on the June 6th 2016, Dementia Carer Voices are asking for people to share with their stories and photos with us:
What Matters To you ?
Who Matters To You ?
We are doing this as part of a national day on Social Media  #wmty16  led by Shaun Maher @Shaun4Maher  Strategic Advisor for Person-Centred Care and Improvement.
We are asking people to share stories on our blog and as case studies, videos, and podcasts. We’ll share these stories on a dedicated page on our website: https://wordpress.com/page/dementiacarervoices.wordpress.com/3845 
So we’re asking you to get in touch to share your experience.  Stories from people Living with Dementia, Families and Carers on ‘what’ and ‘who’ matters to them.
 or with us on social media at @DementiaCarerVo or using the #wmty16
 If you’re interested in taking part in a podcast please contact Ashleigh atAshleigh.deverteuil@alliance-scotland.org.uk 
Or call at 0141 404 0233

Tommy on Tour at Lhead Hos CSH Surrey (2)
This Is about Flipping the Conversation
Away from asking  Whats the Matter With you to What Matters To you ? 
Away from asking Whats the Matter With you to Who Matters To You ?

We are asking people to share stories on our blog and as case studies, videos, and podcasts.


James and his wife Maureen have taken part in our case studies, find out matters to them:

Read what Maureen and James have to say:

James McKillop

What Matters to You
Having a sense of humour is important to me. I’ve noticed people with a sense of humour seem to do better, whereas dour faces seem to deteriorate.
Being able to participate in society matters to me. Having the confidence to give presentations was something I didn’t have before, but now I’ve travelled to places like Japan, Denmark, Beirut, Dominican Republic, Italy and all over the UK to talk about my experiences. It’s important not to give up hope, you’ve got realise there’s things that you can’t do in your life any longer, maybe driving, but don’t dwell on those. Dwell on what you can still do and enhance them. If there’s something you’ve always wanted to do on your bucket list go ahead and do it.
You can still have a life after dementia, it’s a different life, but if you’ve got the right attitude, you’ll still enjoy life.
Who matters to you
Maureen my wife and our four children. Maureen is my carer but I’ve got to watch what I do, I’m her carer in a way. I can hear warning bells and if I do know something is going to upset her or cause her alarm I try to be careful what I do. I made sure to buy her a valentine’s day card!
What information do you need
There was very little information available when I was diagnosed with dementia in 1999 when you were ushered out of the door and left to get on with it. Now people are more aware of dementia, there’s more booklets and information around and in Scotland you get post-diagnosis support, but only if you live in an area where there’s a trained LINK worker so it’s a bit of postcode lottery.
Usually when dementia comes knocking on the door and there’s a couple, there’s a reversal of the roles, whether its male or female. Whoever did the banking and made the financial decisions the other partner now has to take that on. We still discuss things and Maureen involves me in decisions. Any stimulation to keep my brain cells working, all the help I get is from Maureen, and from the stimulation of participating.

Maureen McKillop

What Matters to You
I’m very involved in my church and I do a lot of things there, I’ve got a lot of good friends in the church. My husband James, who has vascular dementia, has now started joining in activities at the church although he doesn’t attend services. He joins us for coffee and biscuits after the service and everyone is pleased to see him. We have Christmas fetes and all sorts of functions that he helps with.
I also go out with friends from church for a meal, we go out to the theatre quite often to see shows. I think it’s important to maintain a balance of things that are just for you, for your own sanity.
Dementia is not the first thing I think of when I wake up in the morning, we’re just ordinary people getting on with our lives and yes, he forgets things, he loses things, but it doesn’t bother me the way it used to.
Who matters to you
My family matter to me. My husband James, and our 4 children. When James was awarded with an MBE in 2011 for his voluntary work for people in Scotland with dementia, that was a real defining moment for me. It shows that life isn’t over just because you get a diagnosis of dementia, you keep going and you can still do things
What information do you need
When James began getting support I began to feel better myself. When he comes home now he’s in a much better place which makes life a lot easier for me. Getting that help early helped us get into the position we are in now where I don’t feel I need formal support. That’s not to say I won’t need it again in the future but for now I know we’re alright.
As I was told at my carers’ support group, you’re human, it’s alright to get angry. You can still get angry, just because your loved one has dementia. You’ve got to learn to live with dementia as well. It takes an awful long time to learn not to get angry all the time, that he’s not doing it on purpose, it’s things that he can’t help. Dementia has made me a more compassionate and tolerant person.
For people who find it hard, especially for married couples, before James had a diagnosis we had hit rock bottom-we were at the point of divorce. When we found out he had dementia, that started to change my attitude to ‘right he’s not well, so how I need to deal with this?’, and I think that’s mainly what helped us through it, and just taking every day as it came, every day was a new day and just, trying to get on with it as best you can.
Listen to a podcast with James and Maureen, discussing their experiences:

Suzy Webster

What matters to You?
That we can be supported to care for Mum at home for as long as possible.
Who matters to you?
My family taking a team approach to dementia care, and my friends who give me the respite I need.
Watch and find out what matters to Suzy:

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