Friday, 30 November 2012

Inspired today at EastRenfrewshire carers and memories FC

Inspired at EastRenfrewshire carers and memories FC today
It was Carer rights day today here in Scotland and I was A Guest speaker at an event to mark this by East Renfrewshire carer .firstly a big thank you to all for the invite especially Mark from the center and Lisa Robertson who works with families in the community also thank you to the carer and people who work in the community for attending and to Cllr Waters and Robertson for attending .I will keep my thoughts about the councilors who after confirming and did not bother to attend for another day and their party leader after all this was about people in their community .but that does not take away fro the privilege it was to speak and the inspiration from the people who I met after my talk. Thank you one and all
I then popped over to Hampden for the public day of memories FC and I have to say what a day I witnessed families and carers from all across joining in for a day of football reminiscence. How much my wee mum and I would have enjoyed a day like today together
Inspired once inspired twice today was a good day
Please see below a wee photo of the team behind memories FC and the team behind my talk at EastRenfrewshire carers


Collecting life stories raising awareness, You’re words,thoughs ,opinions can help others

Collecting life stories rising awareness, can you help? You’re words can
This campaign is about people and based on the life stories thoughts and opinions of people. Our lives in our words .The life stories I have collected to date have been the heart and soul of many awarerness projects and positive work I believe our experiences good or bad can help others.  Below you can view some of the work or projects the words are the biggest part of
 Ongoing discussions with the Government
The story board to awareness films
Talks within the care sector .Universities, colleges, carer groups and reaching out to a wider audience
Motions at city councils and reports to local authorities
An academic paper with a leading university
Awareness through all media mediums
Dementia and caring through art with NHS gg&c
All of the above I do as A SON and on a voluntary basis
You can add you’re story, thoughts or opinions by e mail at  and my promise is to continue and add to the projects I already have
Our life stories I believe can change lives and how wonderful would that be


Thursday, 29 November 2012

Earlier today at memories FC - Tonight my first night out for dinner in 3 years

I am just home from the memories FC event at Hampden park (there are more details on this at the post below) I was one of the guest speakers at this day of discussion, reminiscence and a short football play entitled I left my heart  a quick thank you to Debbie ,Andy the team from Caledonian University their partners amongst others Alzheimer Scotland for inviting me and allowing me to do a short talk about my mum and memories. It was a great day and I found the play to be inspiring .I also met a few people who I have met before at events  including Henry Simmons (pictured with some of the team volunteers) and met some new friends who I hope will help me with more awareness talks .I had a good chat with Henry and cant forget that they funded my short film and gave me support during my walk around Scotland.So all in all it felt like a good day .I have been invited out for  dinner tonight by some of the people involved in this project to discuss future awareness work and this for me is quite an event ,I have only left my house at night around a dozen tines over the last years when caring for my mum and have yet to leave the house at night since mum  passed away .All my talks and meeting used to be in my 14 hours respite each week and lately in the daytime .It will certainly be the first time in A restaurant at night for the last 3 years .Something in my previous life I used to do many times a week .Dementia and caring changed that ,so I was not nervous about speaking today ,but I feel nervous about going out to eat tonight .strange but true and a reflection on just one of the changes long term conditions or caring can bring (give me a talk anyday its less nerve wracking ) So time to brush my teeth comb my hair and venture into the city

below Henry Simmons with some of the memories FC team

Raising awareness my passion; this lonely house is my struggle

It has been another busy week trying to raise awareness .Over the last week I have been a guest speaker to NHS   charge nurses ,been at the first meeting of the GCC dementia working group based on my motion ,met with the Labour leader and shadow health secretary ,been a guest speaker at Angus Carers , today I am speaking at the launch of memories FC and tomorrow I will be speaking at East Renfrewshire Carers.This is a continuation of the work I tried to do whilst caring for my mum .Then I had 14 hours a week to do this ,now I have 7 days a week ,but then I had my wee mum by my side ,to care for and on the very limited hours I had ,i has mum to come home to ,It has been a busy week and I have been leaving early in the morning each day ,so its been dark when I leave and dark when I come home .And that’s where the struggle starts ,As I turn the corner to our street I see a house in darkens I automatically look to my wee mums room window and the lights  are off .,the lights where always on my wee in my mus  room as she  was confined to the house for the last year and her room for the last 6 months of her life and I have yet too  put the key in the front door without crying .I have yet to walk through that door without the struggle mum faced and saddeness  in my heart come rushing back ,I can do the awareness ,I can do the talks I just cant as of yet walk through this door without tears ,but then it was to hard a struggle to often and to hard to witness to often and more than that my we mum is worth crying for, my wee mum is worth more than the tears and she was most certainly worth more than she got  

Today speaking Carers rights day at East Renfrewshire Carers

With thanks to mark Mulhern, Lisa and all at east Renfrewshire Carers for inviting me speak at their event on Carer Rights day Nov 30th .I was a guest speaker earlier on this year at the  center and Look forward to returning to update on my progress ,future plans along with meeting and hearing from Carers and families Also with thanks to Cllr Vincent waters who I met at the SNP conference for attending You can find out more about the work they do at the links below .I will post more derails over the next week

Wednesday, 28 November 2012

Speaking Today at the launch of memories FC Hampden park

With great thank to Andy ,Debbie and all involved   with the memories FC  launch project and  for inviting me as one of the guest speakers tomorrow 

you can get more details on this event Bellow .I look forward to speaking about  my wee mum and some of the memories  I have 

Day 1
We would like to invite you to our end of project Community Conference at Hampden Park, Glasgow on Thursday 29th November 2012 (9.30-16.30)
If you are a practitioner from Health or Social Care who works with people with dementia, an informal or paid carer, a researcher or educator with an interest in dementia care and reminiscence work, this day will be of particular interest to you.
(see below for information on a day for people with dementia and their family carers)
The Scottish Football Reminiscence Partnership Public Conference is an event to share the findings and celebrate the success of the AHRC & SFC funded Knowledge Exchange Project.
"Harnessing the Heritage of Football: Creating Meaningful Activities and Therapeutic Work with People with Dementia."
This novel project has demonstrated the potential of football focussed reminiscence, creatively exploring how a fusion between cultural heritage, scientific insights, design and performing arts can benefit and improve the lives of people with dementia and their family carers.
The event will include talks, a Knowledge Exchange Cafe, the premier of "I left my heart" a dramatic piece based on our findings by playwright and broadcaster Padraig Coyle, performed in the Scottish national Football Museum. Other highlights include a demonstration of an interactive prototype digital 'Memory Cube' deigned by collaborators at Northumbria University and Quilting Memories.
Speakers include Mr Henry Simmons , CEO of Alzheimer Scotland; Professor John Starr, from the Scottish Dementia Clinical Research Network -SDCRN; Professor Debbie Tolson, Professor of Gerontological Nursing at Glasgow Caledonian University & Professor Hugh O'Donnell, Glasgow School for Business & Society, Glasgow Caledonian University.
To register for this free conference go to more information contact Andy at<>
Day 2
The second day of our public conference will take place on Friday 30th November 2012 (12.30pm-4.00pm).
This day is specially for people with dementia, family and other carers and the public who have an interest in reminiscence.
The event will include football memory activities, the premier of "I left my heart" a dramatic piece based on football memories, performed in the Scottish national Football Museum. Other highlights include a demonstration of an interactive prototype digital 'Memory Cube' deigned by collaborators at Northumbria University, the Quilting Memories project, a tour of the Scottish Football Hall of Fame, The Scottish Football Museum, a Mini Stadium Tour and other exciting activities.
Contact Andy if you wish to attend.

with thanks to Angus Carers for Today...............


With great thanks to Mhairi Blyth and all connected with Angus Carers ,I was  a guest speaker at their Carers rights day event earlier today The event will was held at the Meadow bank Inn, Arbroath

thank you for the warm welcome and for allowing me to talk about caring for my mum ,the life stories i recieve and my future plans 

Princess Royal Trust for Carers

Tuesday, 27 November 2012

Yesterday at GCC and the Scottish Parliament

Well I had a busy day today this morning I was at Glasgow City Chambers for the first meeting of the dementia working group based on my motion passed back in February This is a cross party group of Councilors  along myself employees from Alzheimer Scotland my dear friend John P Kelly from the north dementia forum Ann Cumming from SW Councilor Matt Kerr the social care executive at the council and some carers who are currently caring for a loved one Its early days and I showed my short film followed by a presentation on dementia by Alzheimer Scotland on dementia .Today was more of an introduction and setting of of how this group will work ..I look forward to the next meeting and getting started proper on dementia and caring

outside Glasgow  City Chambers before meeting of dementia and caring working group
I then jumped on the train to Edinburgh to meet with Labour shadow health secretary Jackie Baillie we where oined halfway through by labour Leader Johan Lamont
We discussed life caring for my mum, the life stories my campaign amongst other issues, I have been invited to speak at a fringe meeting at the party conference in April to talk about dementia and caring .we also discussed talks before then at local authorities and other events
It is my mission and passion to take the story of the letters and caring to as many people as possible and raise as much awareness as I can

At the Scottish Parliament with Labour leader Johann Lamont and Shadow Health Secretary Jackie Baillie

collecting life stories rasing awareness ,the campaign goes  on #REMEMBERJOAN


Today Speaking at Angus Carers Arbroath

With great thanks to Mhairi Blyth and all connected with Angus Carers ,I will be a guest speaker at their Carers rights day event on November 28th I look forward to chatting about my wee awarness campaign and meeting and hearing from carers who attend and get support from this center
You can view details on the work Mhairi and all the team to at the link below
As well as having Tommy as our guest speaker, we will be focusing on the theme, “Getting Help in Tough Times”, and in particular helping carers:
  • Find financial help.
  • Get a helping hand.
  • Make the most of technology.
The event will be held at the Meadow bank Inn, Arbroath on Wednesday, 28 November from 11.00 am to 2.00 pm. During this time, we will have a fun workshop around coping with the current financial climate and a demonstration of the latest Telecare technology.
Princess Royal Trust for Carers


Monday, 26 November 2012

Today Meeting GCC Dementia working group then meeting Shadow Health Minister at Parliament

Well I had a good day  today ,I met with some art students to try and take forward the dementia through art project I am working on with Gartanvel hospital ,I then popped into see the lads from Enterprise Screen to discuss a new Carer engagement film we are trying to do. A film that helps bring more understanding on caring for a loved one and helps take the story of caring to a wider Audience .As with all I do my part in all the projects are on a voluntary basis and as a son
Tomorrow morning is the first meeting of the Glasgow City Council cross part dementia working group based on mu life stories and motion I had passed at Glasgow City Council back in February ,I look forward to being involved in the aims and outcomes of this group and hope to represent all who sent me life stories and who are facing the journey dementia or caring brings as best I can .After the meeting I am heading through to the Scottish Parliament to meet with Labour shadow health secretary Jackie Baillie to discuss my campaign ,awareness hopes and plans and the new project dementia carer voices that the Scottish government have Kindly helped me with some support  via the Alliance Scotland
I will update more when I return home I hope all or at least some of the projects, ideas become all I believe they can and help raise more  awareness and understanding on both dementia and caring  

Sunday, 25 November 2012

Dad was my hero , Mum my inspiration, one word defines my memory and pain Dementia

My Dad was my Hero, My mum my inspiration and I know my mum has only recently passed away (my Dad passed away 10 years ago ).Two equals in my eyes, my heart and my Soul .So why when I think of my Dad who I miss very much do  I do so with a smile and pride and when I think of my mum I feel great pride but right beside it pain .In a word Dementia .when my wee dad who died of Cancer was told he had 9 moths to live many years ago .His courage ,his Strength got us through it .He made sure we where all ok .He made sure his wife the love of his life was ok ,and we all faced all that came towards us together .5 years ago my mum was diagnosed with dementia and I wish I had the strength of my Dad .I wish I had his Courage and I wish on too many Occasions I could have  cared for my wee mum  his wife the way he would have and more than that the way I wanted to .But dementia had such a big say in all of this 5 years of struggle 5 years of a lack of understanding from within and 5 years of too often a lack of understanding towards us .We scrambled in the dark to often ,we where both lost to often and we both struggled to often And that’s why its important that we as a society  raise understanding ,Why we as a society speak more openly about dementia ,so no one else feels as lost as we where ,so that others can face this journey with all they  can. And so people like me can think back to the ones they loved and cared for and smile without the pain and  a chance to smile  and remember without the pain

My dad ,my hero my mum my  inspiration my two different memories defined by a lack of understanding defined by one word Dementia

Today meeting to finalize outline for Carer engagement film with lads from Enterprise screen

For the last wee while I have been working with the lads from enterprise screen on a story board for a new film about Carer engagement .Hopefully I can take this idea and get (not for me in any way shape or form) some funding to allow us to make this A film much like my previous to help raise the profile of caring, and including the words and carers who write to me,their lives in their own words .A film that is free for all to view and use
I find it disturbing that in to many discussions and by those who often shout loudest that carers are defined by Costs or savings to Governments or local authorities. And the same numbers always being vocalized .for me Carer are more than that ,they are Husbands ,Wives ,sons ,Daughters ,brothers ,sisters ,they are people and my campaign has always been about people ,respect dignity and understanding
Does the wider society really know that much about the life of a carer or the loved one they care for I for one don’t think so ,and that’s what I hope this film helps in some small way change
as with all I do my part will be voluntary and as a son

Saturday, 24 November 2012

Sometimes the tears I cry don’t want to stop,I miss my wee mum

Sometimes the tears don’t want to stop,

That’s the thing about crying ,once you start it feels impossible sometimes for them to stop .I have this passion in my heart to campaign and raise awareness and that’s when I feel my strongest but at home especially at night missing my wee mum who I cared for 5 years turns to a much clearer picture of what happened over the last years ,especially the last months ,while caring for my mum we concentrated on getting through each day ,we tried to keep pace with all mum was facing and all I to often struggled to witness. and even though I felt the sadness even though I cried myself to sleep on many occasion I never had much time to think to deeply or dwell on those feelings .now  time is all I have and the reality of all mum faced all those struggles and all that sadness overtakes the good memories ,I hope time changes this, I hope I think back though never forgetting but with better memories .when I cried before whilst looking after mum ,she always managed to make it better, with a smile or her love .sometimes now I don’t know what will make it better ,sometimes the tears don’t want to stop

Dementia ,cariing through Art a permanent exhibition would you like to get involved?

Gartanvel Royal hospital and I have been in discussions about a permanent exhibition in and around the new older persons wards based on the life stories I receive
An Exhibition based on the words and lives from families across Scotland .We are looking for people who are passionate about dementia awareness and caring to get involved to help inspire and comfort  families visiting a loved one in hospital .There is some funding for materials and such available for anyone who has the time, ideas and ability to inspire others through art
The corridors with my working title at the moment the corridor of inspiration will permanently display the works chosen .work that I hope will comfort all who walk through
Please get in touch if you would like to get involved with this unique project that I hope will bring comfort and inspiration to others

as with all i do ,i do this on a voluntary basis

Collecting life stories rasing awareness

A busy week ahead ,the campaign goes on

I have a busy week ahead trying to raise awareness on both Dementia and caring ,for the last year whilst caring for my wee mum I used the 14 hours a week respite I had to do this. Now that my wee mum is sadly no longer here I am trying to up the pace on my awareness work in her memory .I have a few talks and meeting next week

Monday 26th
Meeting the lads from Enterprise screen to finalize the story board and costing for a carer engagement film  
Tuesday 27th
First meeting of Glasgow City Council Dementia cross party working group based on the motion I had passed last February
Meeting with shadow health secretary Jackie Baillie at parliament to discuss my campaign and awareness work (labour leader Johann Lamont is popping in for part of this meeting)
Wednesday 28th
Speaking at Angus carers in Arbroath as part of carers rights week
Thursday 29th
Speaking at the launch of memories FC at Hampden Park
Friday 30th
Speaking at East Renfrewshire Carers as part of Carers rights week, then over to Memories FC for day 2
My wee campaign continues all of the above I do as A son and on a voluntary basis  


Friday, 23 November 2012

A busy day and a proud day -Honorary Member carers link

I had a busy day today I met with NHS gg&c to discuss some ideas I have to promote carers, carer engagement and services and the meeting went really well . We are discussing more over the next few weeks on how to take some of the ideas, ideas that cover the letters I receive forward
I then was over at the carerslink AGM and I am very proud to have been made an honorary member for my wee campaign on Dementia and caring With great thanks to Ann who sent a letter to the board recommending this and to the board and carers who attend for making this a special day in my wee campaign
Thank you

Thursday, 22 November 2012

Dementia my motion Glasgow City Council,. City Dementia working group meets Nov 27th #dementia

Back in February I took life stories I receive along with reports to Glasgow City Council and had with great thanks to all the councilors a cross party motion passed
Glasgow city council has set up a cross party dementia working group that will meet this Tuesday for the first time to set up the workings of this group dementia ,organization ,NHS partners carer representatives and myself will be on this working group ,this motion was built on the words and life stories of families who shared their stories with me ,I hope others will add to the life stories  I have to date and keep this working group close to the roots that it has been built on our lives in our words
You can send thoughts opinions or life stories to to help guide the aims and outcomes Thank you and thank you to the amazing families whose stories raised and had this motion passed along with the forming of this group
This is just the beginning your words can help
With thanks to councilors Flanagan, McDonald and Kerr along with Ann cumming from social work Glasgow for the parts they played and support to make this happen
It would be a shame to let it go to waste?
Council recognises the inspirational efforts of Tommy Whitelaw in raising awareness of the issues effecting the carers and families of people suffering from Dementia through his “Tommy on Tour” campaign Council agrees to set-up a Cross Party Working Group to engage with carers and to ensure that the services provided to carers are appropriate to the needs of the carers and those suffering from Dementia and that the Working Group’s findings be presented by Council to the Scottish Government.

Meeting today NHS gg&c non exec vice chair then Carers link to me made Honorary member

tomorrow I will be meeting with Peter Daniels Non Exec Vice chair NHS gg&c to chat about and update on my wee awareness  campaign .I have met with Peter before and I am hoping to discuss some idea I have along with  
my future plans for Tommyontour After that I will be attending the Carerslink AGM  I am very proud to have been informed that I have been made an honorary member of Carers Link for my awareness campaign,Its lovely and its been a tough few weeks here since my wee mum passed away and this campaign started with her story so I Really ,especially this and to receive this from  an amazing group of carers and people who support carers like I was in their community

Thank you and you have brought both a smile and some tears today and t look forward to the AGM and accepting on behalf of my wee mum and all the life stories and families I have met on my wee awareness campaign


Hi Tommy you have been nominated for Honorary Membership of Carers Link by a Carer because of your campaign to raise awareness for people with dementia.  The board unanimously agreed that you merit the Honorary Membership (only the third in our history) and it will be mentioned in Jennifer’s speech at the AGM.

Alex Sinclair

Speaking Today to NHS gg&c charge nurses Gartanvel Royal hospital

Today speaking to NHS gg&c charge nurses Gartanvel Royal hospital

With great thanks to NHS gg&c especially Con Gillespie, John Stuart and Rona Telfer I have been invited to speak to Charge nurses in the Seminar room at Gartanvel Royal Hospital

I look forward to speaking about Dementia ,life carting for my mum ,the letters I receive and people I meet ,I will also be showing my short film and handing out some reports on the life stories I receive
This is the heart and soul of my campaign sharing life stories within the care sector as wit all I do ,I do this as a son and on a voluntary basis
With thank to all above and who attend for allowing carers like me to get involved

collecting life stories raising awareness ,


Wednesday, 21 November 2012

Positive meeting this morning with regards to Academic paper on the life stories I receive with leading University

Over the last few weeks I have been discussing the possibility of an academic paper on the hundreds of life stories I have received .i met today with the professor who will be the lead on this today to discuss the aims and outcomes and they are putting together a paper to outline all discussed. So a step closer and we have agreed for the University to apply for the appropriate funding. Along with I hope bringing more understanding I hope this can be fed into future stratifies. As with all I do my input and part will be as a son and on a voluntary basis
I will update more over the next weeks once finalized
Collecting life stories raising awareness

Strength,-Weaknes- Delight-Despair the rollercoaster

Strength, Weakness, delight and despair the rollercoaster goes on
And so it continues the emotional rollercoaster that’s what 5 years caring for my we mum was and in many ways how inside my heart and head I have felt since mum passed away 8 weeks ago Strength every in ounce of our strength was challenged and to often we where not strong enough weakness on the days it all became to much my weakness was to obvious and the frailty in my mum so apparent over the last months delight the delight that a smile or stroke of my hand or face my mum would give even on the toughest of days ,despair the despair on the hardest days or weeks or months ,the feeling of helplessness as I lay in bed crying myself to sleep as my mums life became affected in every single way especially over the last months this is an over view ,the whole story would take to long to tell ,but those words have continued to define my life Strength I feel an inner strength when I raise awareness and speak about my mum ,dementia and the journey we faced weakness when at home and the loneliness and missing my mum takes hold and the tears flow delight , the delight in my heart for the love and kindness my mum gave to me and all she met Despair walking home to the house this afternoon and opening the front door today to a  lonely house that’s has lost it soul and heartbeat and the struggle and realization that my mum is no longer here
But delight and joy that I was so lucky to be Joan whitelaw son, time will define and decide different memories,at the moment those 4 words tell the story today



Tuesday, 20 November 2012

Today meeting with University to discuss the working of Academic paper on the life stories I receive

Well I am off today to meet with Irene Oldfather who is my chosen mentor for my dementia carer voices project ,ideas ,hopes  and in many ways dreams ,we are meeting some lecturers to discuss the workings of an academic paper on my campaign ,life caring for my mum and the life stories I receive this if it comes of is a big project and I look forward to learning more about the possibility ,aims and outcomes ,I have many more hope ,ideas and awareness plans and will keep updating over the next few weeks
Collecting life stories, raising awareness, the campaign goes on
as with all I do ,i do this as a son and on a voluntary basis

Meeting shadow health secretary at Scottish Parliament on Tuesday

After my meeting at Glasgow city Council on Tuesday for the setting  up the cross party dementia working group based on my motion passed last February I will be going through to Edinburgh to meet with Jackie Baillie Labour Shadow health secretary to discuss my campaign and awareness work ,labour have appointed  a carer champion and this will be part of the discussions not quite sure what it means .I have met with Jackie before and I hope we can discuss all things awareness related as that’s what I do .I have had great support and I feel a relationship with the Scottish Government and hope I can rely on and have similar support  from Jackie  as I have done with the SNP  in Particular Nicola Sturgeon who I have great respect for and for  the time help  and understanding she has given this son who cared for his mum and his awareness hopes dreams and campaign

Speaking Angus Carers Nov 28th carers rights day

With great thanks to Mhairi Blyth and all connected with Angus Carers ,I will be a guest speaker at their Carers rights day event on November 28th I look forward to chatting about my wee awarness campaign and meeting and hearing from carers who attend and get support from this center
You can view details on the work Mhairi and all the team to at the link below
As well as having Tommy as our guest speaker, we will be focusing on the theme, “Getting Help in Tough Times”, and in particular helping carers:
  • Find financial help.
  • Get a helping hand.
  • Make the most of technology.
The event will be held at the Meadow bank Inn, Arbroath on Wednesday, 28 November from 11.00 am  to 2.00 pm.  During this time, we will have a fun workshop around coping with the current financial climate and a demonstration of the latest Telecare technology. 
Princess Royal Trust for Carers Cached

at the Alliance to start on my 2 year project Dementia Carer Voices

I will be popping into the alliance today to start work (Voluntary on my part) on the Dementia Carer Voices project based on my Tommyontour campaign
The Alliance will be facilitating this two year project supported by the Scottish Government, This has been built on the life stories people send me and I am grateful that the Deputy First Minister on reading the life stories has allowed this project to be supported and recognized. I hope this will allow us to make carers voices all it can be and bring, more understanding on both dementia and caring .I have many ideas, hopes and dreams and hope with support guidance and support from the Alliance in particular Irene Oldfather that we can take this project from my bedroom to a wider audiance and  take the words, thoughts opinions and life stories to the heart of government and help raise awareness across a wider society
This started with one story my wee mums and has been added to by many  more.I hope you can all join this project and help give families facing Dementia and caring for a loved one a voice
I do this as I have done from the first day as a son, with passion and with hope to bring more understanding and help, It’s to late for my wee mum but I hope it helps others in the future
You can get more info at the links below

please note i do this as a son and on a voluntary basis #rememberjoan

Monday, 19 November 2012

Nov 27th GCC Dementia working group meeting based on my motion and Campaign your opinions can help

meeting a week tomorrow GCC Dementia working group based on my motion and Campaign your  opinions can help 

The first full meeting of the Dementia working group based on the motion I had passed on the life stories of others will take place at the City Chambers on November 27th .this group will be made of Councilors,NHS ,SW ,representatives from dementia and caring organisations a carer from the 4 compass points of Glasgow and myself (representing my 5 years caring for my mum and the life stories I Receive
This motion was built and passed on the words and experiences from carers like me and not to forget my mums story that I have told all across Scotland at events and through all forms of social media ,TV ,Radio and newspapers ,this is the beginning of  project to look at dementia and caring across Glasgow and I hope you can help me build on the life stories I have to date to allow carers the privilege of telling ,sharing their experiences in order to help others I have great respect for the work funded organisations do but this was always about people first and at the center
I hope you can help me collect more life stories to make this all it can be and let families be the biggest part of deciding the outcome along with keeping this about people and true to the motion that was passed You can share thoughts and opinions at or send to Tommy whitelaw 29 crosslee street Glasgow g52 1sl This started with Joan story and was added to by so many more and all those stories together can decide a better future and outcome
I hope you can share this and help keep Joans and others stories true and alive

Council recognizes the inspirational efforts of Tommy Whitelaw in raising awareness of the issues effecting the carers and families of people suffering from Dementia through his “Tommy on Tour” campaign
Council agrees to set-up a Cross Party Working Group to engage with carers and to ensure that the services provided to carers are appropriate to the needs of the carers and those suffering from Dementia and that the Working Group’s 

Sunday, 18 November 2012

Today the official end to my life as a carer, but not the memories or struggle or heartbreak that takes a bit longer

Well that’s it I am officially no longer a carer, the grace period when a loved one dies is over I am now a job seeker and campaigner as opposed to a carer and campaigner But life is not that simple is it ,not as simple as a letter to say you have to report to the job center on Nov 19th ,my love for my wee mum does not stop today  the memories of the struggle we faced does not stop today  ,the pain inside my heart does not stop today and the mental scars I feel do not stop today and what certainly does not stop today is my passion and desire to raise awareness and try and make sure others understand more than we did ,get help quicker than we did and recover quicker than I will .I will not be taking a full time job ,I have a campaign to finish  they can keep my Job seekers  if they so wish  I am used to being poor 5 years of caring got me used to that ,although that was never  real issue for me its respect  dignity and understanding I campaign for .I will never get used to the memory of dementia and all it brought to our door and my wee amazing mums life. but I will have to get used to not being a Carer  
Collecting life stories raising awareness keeping the promise I made
You can add yours at

A busy week, no disguising the loneliness at home or inside

I have a busy couple of weeks coming up and that was part of my coping mechanism whilst caring for my mum and is now my coping mechanism for life since mum passed away. Our campaign we started side by side, a campaign started as a cry for help really kept me focused and able and the theme is still the same .We like so many others facing or caring for a loved one with long term conditions or illness became isolated from the world outside and that theme has carried on .I feel strong and able when out working on this campaign, at meetings doing talks or working on future plans .I feel able and strong to talk about caring for my mum but that strength goes at home when thinking back to the last 5 years .we where lonely in amongst all the other challenges that dementia  brought and that has increased without my mum by my side. I miss her so much, but this campaign ,nothing will get in the way things that hold me back when at home feelings that I struggle with at home I leave them behind when I walk out this door as I had to do so often when caring for my mum I said once before I felt I lived two lives and that is still the case
On the positive side I have a busy couple of weeks ahead and my promise to my mum will continue, to raise awareness as best I can
November 19th using Alliance facilities to work on campaign ideas
November 21st meeting re dementia carer voices (Irene Oldfather)
November 22nd Speaking to NHS gg&c charge Nurses Gartanvel hospital via NHS gg&c
November 23rd meeting meeting peter Daniels non exec chair NHS gg&C to discuss ideas and involvement then attending Carer Link AGM (being made honorary member)
November 27th   meeting and setting up of Dementia working group at Glasgow City Council re my motion passed back in February based on the life stories I receive
 November 28th meeting and speaking with carers Arbroath carer centre Angus
November 29th memories FC Hapmden day 1 (speaking at launch)
November 30th Speaking at East Renfrewshire Carers   then back over to memories FC for day 2
Collecting life stories raising awareness

Saturday, 17 November 2012

Tommyontour film& blog on NHS gg&c website A carer Journey /experience

With thanks to the NHS gg&c for sharing my film, blog and story on the NHS community engagement teams web site
With thanks to Daniel Connelly from the community engagement team
Thank you
You can view the NHS site and page at the link below

Life &love stories, thoughts, opinions experiences, good or bad to help raise awareness and give carers a voice

This wee campaign is built on people by people sharing their Life stores, love stories, thoughts, opinions experiences, good or bad to help raise awareness and give carers a voice .the stories collected to date have helped raise motions at councils, reports on caring by social works, the making of a film and much needed media coverage .the stories collected to date have formed the basis of a new project Dementia Carer Voices to work with and help enlighten the Scottish Government on how we live and feel on a personal side the stories have helped guide families with no help or services to help and services available and for that I am proud ,proud of this campaign and proud of the people who have shared their experiences
There is much more to do and many more life stories to collect, I hope you can help by adding yours at  our experiences can help others and that’s something we can all be part of and proud of  
Thank you

Dementia Carer Voices tommyontour and the Alliance Scotland ,Tommyontour and support from the Scottish Goverment

Please see below an overview on the new two year project based on the Tommyontour / life stories
I will be a voluntary partner in the project supported by the Scottish Government alongside my Tommyontour campaign

life stories can make a difference !                                

Health and Social Care Alliance (the ALLIANCE) Proposal for Two Year Project to Give a Voice to Carers and to Raise Awareness of The Carer Journey for Carers of People with Dementia
Dementia is a long lasting and progressive condition, on average lasting 10 years - over which time the individual’s abilities and skills deteriorate, including memory, cognition, communication, decision making and activities of daily living. This makes caring for someone with dementia, a particularly difficult and different experience, to caring for, for example, physically frail elderly people.
An analysis of calls to the 24 hour dementia helpline and Tommy on Tour Carers’ letters demonstrates that carers often feel isolated and that there is insufficient recognition of the range of complex issues about which they are expected to have understanding, from legal and financial, to health and housing, as well as, cope with the distressing, social and emotional demands of caring. Given the life span of the illness and the varying rate of deterioration, Carers of people with dementia often care in very changing and challenging circumstances for periods of up to 10 years and sometimes longer.
Reaching out to carers of people with dementia and giving them a voice through a “letters campaign” has been part of an awareness raising activity of Tommy Whitelaw, who has experienced first hand what it is like to care for someone with dementia. Tommy has also made a film about dementia and caring for someone with dementia with a view to reaching a wide audience in the UK and beyond.
The objective of this report is to consider how work to date can be captured and expanded within a wider project framework centered within the ALLIANCE.

Supporting Rights and the Carer Voice
The ALLIANCE fundamentally supports the objectives of the Charter of Rights for People with Dementia and their carers which adheres to the PANEL approach to Carers Rights – that is that Carers of people with dementia have the right to -
·        Participate in decisions which affect their human rights;
·        Accountability of those responsible for the respect, protection and  fulfilment of human rights;
·        Non Discrimination and equality;      
·        Empowerment to know their rights and how to claim them;
·        Legality in all decisions through an explicit link with human rights, legal standards in all processes and outcome measurements.
The ALLIANCE also recognizes the wider policy context within which the Carer Voice can be heard.
The Carers and Young Carers Strategy 2010 – 2015 sets out Scottish Government priorities for carer support including acknowledging that carers should be recognized and valued as equal partners and that they should be supported and empowered to manage caring responsibilities in good health. There is the opportunity for the proposed project to provide useful information for Scottish Government’s ongoing work on Carer strategies.
The National Dementia Strategy, designed to make real and measureable changes to dementia services and people’s experience of them over an initial 3 year period to 2013, with a second strategy to follow, offers further opportunity for input and influence.
Further to this the Christie Commission report into reforming public services has as one of its clear principles – reform to empower individuals and communities receiving public services by involving them in the design and delivery of the services which they use.
There is therefore the opportunity within a broad policy context to harness the voice of unheard carers of people with dementia and in particular those hidden carers, who are more isolated and therefore less likely to contribute to policy consultations.
The ALLIANCE recognizes the importance of the Carer Voice in informing future service provision and in empowering carers themselves. To this end we propose a project which will –
  • Harness the work undertaken to date, particularly by the Tommy on Tour campaign;
·        Develop this by supporting Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland.
·        In doing this, the ALLIANCE will highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and feel enabled to ask for additional help when it is needed;
·        Capture the experiences of carers across Scotland with a view to informing future policy and service provision;
·        Raise awareness of the issues around caring for someone with dementia including among health and social care students;
·        Empower carers by providing information based on the Charter of Rights and Carer Strategy about caring for someone with dementia;
·        Highlight the role of Carers as natural resources; Carers as people with needs; Carers as people with independent lives;
·        Work with other Carer Organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users. (As a network organisation which includes organisations such as - Alzheimer Scotland, Carers’ Coalition and Age Concern within our membership, we are well placed to undertake this role).

The project will do this through visits and talks to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media; network events and consider possible future film to raise awareness/understanding.

·        Greater understanding by health and social care professionals of dementia and the carer journey;
·        Reduce isolation of carers of people with dementia;
·        Increase awareness of carer rights;
·        User friendly information to support awareness raising;
·        Inform policy and practice on carer matters.
·        Gather information supporting family and person centred approaches to health and social care.

Reporting to Scottish Government                                 
A quarterly update will be provided to Scottish Government outlining ongoing activity. An overall report will be provided at the end of the project identifying outcomes achieved and noting key messages which have arisen from Carer engagement.
For further information about the Alliance contact:
Irene Oldfather, Programme Director
For information on “Carer’s voices” contact:
Tommy Whitelaw

About The Health and Social Care Alliance Scotland (The Alliance)

Long Term Conditions Alliance Scotland (LTCAS) has recently been re-named The Health and Social Care Alliance Scotland, People at the Centre (The ALLIANCE).This reflects the developing landscape and the role the organization has already begun to play within this as strategic partner of Scottish Government.  This change builds on the roots of the organization in the voice of people who live with long term conditions and will serve to strengthen the volume and impact of that voice.

The ALLIANCE vision is for a Scotland where people with long term conditions enjoy, not endure, full and positive lives, free from discrimination and supported by access to high quality services, information and support.

The ALLIANCE is the national third sector health and social care intermediary.  It brings together over 250 organisations including key national Carer Organisations to ensure the voice of people and unpaid carers, and the expertise of the third sector, are influential in shaping policy and practice.  Members include large, national support providers as well as small, local volunteer-led groups.  Many NHS Boards and Community Health and Care Partnerships are associate members.

The ALLIANCE is a strategic partner of the Scottish Government and has close working relationships with national health and social care bodies, including NHS Education for Scotland and Healthcare Improvement Scotland.  The organization represents the third sector on the Quality Alliance Board and related Delivery Groups and on a range of key strategic activity, including DALLAS (Delivering Assisted Lifestyles at Scale) and the Scottish Assisted Living Initiative.

The ALLIANCE has a track record of helping bring about lasting, transformational change through the self management agenda.  By harnessing the capacity of people living with long term conditions and unpaid carers across Scotland, The Alliance and its members have helped to change policy, practice and the culture of services.  The report Impact, an Evaluation of the Self Management Fund for Scotland 2009-11 describes the return on investment realized through the Fund.
The ALLIANCE has a number of work streams that are closely aligned with Carers, Dementia and Older People including the PATH to Active Ageing Report and the work of Life Changes Trust to outline an investment programme for BIG Lottery £25million spend.
In addition to this the ALLIANCE is developing a person-centeredness agenda, including its 12 Propositions for Social Care and related work on health and social care integration, recently established Change Fund: Enhancing the Role of the Third Sector Programme and Active Ageing Programme. 

All of this work sits in the context of the Christie agenda and is intended to contribute to: improving outcomes, including supporting human rights and independent living; building capacity of individuals, families and communities; shifting to preventative investment; integrating services; and developing a sustainable approach in the face of falling resources and rising need.

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 ...