Tuesday, 30 April 2013

Thank you Southern General Hospital

Thank you Southern General Hospital

For the last 4 Tuesdays I have been a guest speaker at the Southern General hospital .I would like to say thank you to lead Nurse Geraldine Marsh all the staff who attended and NHSGG&C for taking the time to organize, attend,Listen and respond to a sons story about caring for his mum and the letters I have received on my tour

I hope in some small way the talks help raise awareness and thank you all for your time


13th June launching “ITS OK TO ASK” new carer engagement film with NHSGG&C -CHP

The new Carer Engagement Film I wrote with Enterprise Screen funded by NHSGG&C in partnership with the Alliance Scotland will be launched on June 13th at a Glasgow City Centre venue.

The film with a booklet will go to GP`s across Glasgow and will be freely available to carers and families.  This film was inspired by the families who write to me and I hope helps families reach out for support available that can help them.

For me sitting alone nearing crisis is a tragedy in itself I hope this film helps people reach out and understand there is help available and that its ok to ask!.

We are on the last day of filming for the new carer engagement film in partnership with NHSGG&C –CHP.

Today we have some carers speaking about support and the difference support at the right time and manner can make, with a big thanks going to Cathie and Viv for their efforts and all the carers taking part.

Looking to launch the film early June

Earlier posts

I will be popping in to enterprise screen Friday to do a bit more filming  for the new carer engagement film for NHSGG&C-CHP  along with recording some voice overs for some of the filming we have already done 

Post From FilmingLast Week 

just home from a long day from the first day of  filming a new carer engagement film “ITS OK TO ASK “ A  partnership with NHSGG&C- CHP , and the ALLIANCE Scotland  ,Its was great to spend the day with the crew from enterprise screen who directed and filmed my Tommyontour film funded by Alzheimer Scotland back in 2011
I took the idea for this film to Peter Daniels and Jill Carson from NHSGG&C and it is based on my own experience caring for my mum and from the content in many of the letters I receive .Many people are heading towards crisis before they ask for help or are not aware how or who to ask for advice and support and more than that not aware of support they can get to help when life changes in so many ways as a loved one needs care
For me personally I was lost lonely and isolated and asking for help seemed an impossible task .I hope this film and the awareness road shows that accompany and follow the launch helps reach out to carers and also bring more understanding on the caring roll to the wider society
I will never claim that services and support will fix all the problems and issues we face caring for a loved one but its to hard to do it alne and I truly believe it’s a tragedy to not know about help available and I truly believe “ITS OK TO ASK “
I dont want anyone to feel like I felt to often and i want everyone to get the best help and support  available thats not to much for anyone to ask ,is it ?

Today Speaking Southern General Hospital 4th / 4 talks to staff over April

I have been invited to speak to staff at the Southern General hospital, 4 talks in total across all departments .the first talk is Tuesday 16th , followed by talks on April  23rd and 30th With great thanks to head Nurse Geraldine Marsh for inviting me along to speak about caring for my mum, dementia, the letters I receive ,and people I have met on my awareness tour .
With great thanks to Nhsgg&C*c for taking time to involve an son who cared for his mum and the life stories I receive

last week the toughest talk of all ,to the staff in the wards my wee mum passed away


Monday, 29 April 2013

Today attending Alliance Annual Conference -Dementia Carer Voices Workshop

Dementia Carer Voices - Supporting Rights and the Carer Voice

Caring for someone with dementia can be a rewarding, yet difficult and different experience due to its unique emotional impact, and the range of complex practical issues with which carers are faced, and expected to understand.
Workshop participants will learn about the work of the ALLIANCE’s Dementia Carer Voices project in capturing carers’ views and experiences to raise awareness of the impact of dementia on families and inform future policy and service provision .This interactive session will also explore the journey of dementia carers and the importance of their role as equal partners in providing person-centred care. Carers will have the opportunity to discuss what caring means to them, how it impacts on their lives, and how they can be supported and empowered to carry out this role.
Chaired by Irene Oldfather, Dementia Carer Voices Programme Director
Speaker, Tommy Whitelaw, Dementia Carer Voices Project Officer

Friday, 26 April 2013

Busy few weeks, thank you for the support opportunities and kindness

The last few weeks have been busy and I hope the opportunities to raise awareness continue

I want to say a big thank you for the great support I get and to all who have been supporting my awareness work through invites to talks, meetings Involvement and  via my blog ,twitter and Facebook

Thank you

March 2nd attending dementia dialogue event

March 4th meeting care inspectorate

March 5th speaking Cardonald College

March 5th speaking Sothern general hospital

March 7th     attending steering group Art in the Gart

March 8th       conference at City Chambers NHS  GG*C  caring for older people

March 11th speaking Cardonald College

March 12th speaking Caledonian University

March 13th attending Human rights conference GCU

March 14th    speaking at Lockerbie carer’s dementia group

March 15th   speaking Ayr College mental health students

March 2oth     members debate Scottish Parliament dementia carer voices 

March21st attending with stand SDRCN Conference Stirling

March 22nd speaking at SDRCN Conference Stirling also having stand

March 26th   filming “its OK to ask”

March 27th   filming “it’s OK to ask 

March 28th speaking Reid Kerr College 

April 1st re –airing BBC interview with sally Magnusson

March / April      Filming “its ok to ask “ a new carer engagement film with NHSgg&c –CHP

March 3rd         Attending GCU healthcare event

April 3rd         Filming interview NHSgg&c Community Engagement team -a case study caring for mum

April 4th         Attending Speaking at event N/Ayrshire Dementia  support services

April 9th 16th 23rd 30th      speaking to staff Southern General Hospital

April 10th                      meeting mental Health civil servants office 

April 12th                     meeting David Roxburgh Ayr

April 19th   morning        Speaking Alzheimer Show London

April 19th     Speaking Camden town hall dementia awareness event via Mayor Camden

April   20th         speaking at labour party conference Via Jackie Baillie 

April 22nd          speaking for Christine Hoy Link workers 1pm

April 22nd                 meeting Con Gillespie office NHS head nursing

April 24th                  life changes trust launch

May 1st                   Alliance Conference Perth hosting Dementia Carer Voices workshop

May 2nd                  Speaking attending carers strategy event N/ Ayrshire council

May 3rd                 final filming “its ok to ask “  NHSGG&C

May 7th                 speaking Reid Kerr College morning

May 7th                 Meeting Julie Christie afternoon  

June 13th                Speaking Aberdeenshire carers

 On-Going Projects 

Academic/ educational paper /              

Carer engagement film                  working title (its ok to ask)  

Glasgow city council dementia working group based on my motion passed last February

Thursday, 25 April 2013

Attending & Speaking VSA Carers Group Aberdeenshire June 13th Carers week

Attending & Speaking VSA Carers Group Aberdeenshire June 13th

A big thank you to Kirsteen Heneghan and all the team from VSA Aberdeenshire for inviting me along to speak at their Carers week event June 13th.VSA cover all of Aberdeenshire, the event will be held in Inverurie starting 11am till 2:30pm, they will be holding a couple of Workshops on the day about their Creative Break Funding and Emergency planning. And have some other things in the pipeline too .I will add more details nearer the time

I look forward to speaking about caring for my wee mum, the letters I receive and people I have met on my tour and meeting carers ,staff and families who attend on the day

You can get more details on the work they do at the links below

The final programme of events will be finalised by the first week in May. The event is for all Aberdeenshire Carers and is taking place in The Hopeville Club in Inverurie from 11 – 2.30 pm, if people wish to reserve a space as we need a rough idea of numbers for catering etc they can contact Janice Duthie Senior Info and Advice Worker on at  e-mail Janice.duthie@vsa.org.uk or Sandra Andrew Info and Advice Worker  at  sandra.andrew@vsa.org.uk  . 

Thank you Kirsteen and all the team for inviting me along


Thank you Scottish health council for mentioning my blog in their e participation report (rise of the e patient )

 A big thank you to the Scottish  health  council for mentioning my blog about caring for my mum Joan in their e participation report just published

You can view the full report at the link bottom of the page


 The rise of the e-patient
Use of the internet for finding health information, peer support and also
blogging about health conditions has given rise to the term e-patients (as well
as e-carers). This term is used to describe patients (and carers) who use web
tools to help manage their health conditions. These patients take a very active
part in their healthcare which has also led to a ‘participatory medicine’ model
of healthcare, described by the Society for Participatory Medicine24 as:
“… a model of cooperative health care that seeks to achieve active
involvement by patients, professionals, caregivers, and others across the
continuum of care on all issues related to an individual's health.”
Examples of such e-patients and e-carers include Michael Seres who was
opening speaker at the Scottish Health Council’s social media event in
February 2013. After coping with Crohn's Disease and then intestinal failure
Michael became the 11th person to undergo a small bowel transplant at the
Churchill Hospital in Oxford and blogs and tweets about his journey as a
bowel transplant patient25. Tommy Whitelaw also blogs and tweets about his
experience as a carer for his mother who had dementia. His blog post
‘Tommy on Tour’26 raises awareness of dementia with a wide range of carers,
dementia patients and healthcare professionals.

full report 

Wednesday, 24 April 2013

Launch of Life changes trust

Attending Launch of Life changes trust today

Welcome to the Life Changes Trust
Life Changes Trust (LCT) is about to have a big impact on the lives of some of the most vulnerable people in Scotland. Over the next ten years, the Trust will invest £50 million to benefit individuals and communities throughout the country.
LCT has been set up as an independent charity to achieve positive change by nurturing initiatives and influencing policy. The Trust will focus on two specific groups - young people who are in the process of leaving care, and people with dementia and their carers.
Collaborating with local authorities, the NHS, voluntary organisations and other stakeholders, LCT will provide immediate action and long-term support. The outcome will be a significant and lasting improvement in the quality of life for two groups of particularly vulnerable people
Life Changes Trust

The Life Changes Trust is about to make a big impact on two of Scotland’s most vulnerable groups:
·        young people leaving care; and
·        people newly diagnosed with dementia and their carers

Carers for those with dementia

“I absolutely believe as a Carer that if you prop me up a little bit, then I will give my Mum the best care in the world…”
Tommy, Carer

Link to LCT web Page http://www.lifechangestrust.org.uk/

Link to short film (including a short talk by myself )

Some Photos took of the Launch today.

Me, Irene Oldfather, James McKillop,  Edward and Professor June Andrews  
Me, Irene Oldfather and Caroline Brown

Me and Jim Pearson

Dementia Carer voices April Newsletter and project team

Latest Dementia Carer Voices Newsletter now available at 

Introduction to Dementia Carer Voices Project Team

As you know,  my Tommy on Tour campaign has been taken under the wing of the ALLIANCE as a two year project with funding from the Scottish Government. I am really proud that a campaign which started from my bedroom whilst caring for my Mum Joan has reached a stage to work alongside the Alliance who do a lot of really good work on behalf of people living with many long term conditions. I am really looking forward to working with them, as my campaign has always been about people and I believe I have found the right people to take my project to a new stage. I have great respect for the Alliance Chief Executive Ian Welsh, Programme Director Irene Oldfather who was on my wish list to work with for the last year, and Christopher Doyle who will be leading on Policy and Information. I believe this forms a partnership of people
 who together can help represent families like mine who have shared their life stories with me.

Please see below some more information on the Dementia Carer Voices Project Team that I am proud to working alongside.

Programme Director : Irene Oldfather 

Irene Oldfather is presently Programme Director at the Alliance leading on Dementia Carer Voices, the Life Changes Trust Project and Active Ageing. 

Formerly as a Member of the Scottish Parliament, Irene 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, now incorporated into Scotland’s National Dementia Strategy.  As an MSP for 12 years Irene 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. She also Chaired the Scottish Parliament’s European and External Relations Committee until May 2011.
She was a Member of Committee of the Regions for 14 years until May 2011 and in October 2011 and February 2012, she returned to Chair seminars on European Year of Active Ageing 2012, in Brussels. Her recent publications include PATH to Active Ageing 2012.
Irene was educated at Strathclyde University, where she obtained an Honours degree in Politics and a post graduate MSc by Research. Before becoming an MSP she taught at the University of Arizona and the University of West of Scotland and worked as a journalist, researcher and broadcaster.
January 2013

Policy and Information Assistant: Christopher Doyle

Christopher is working alongside me to collect some of the key messages shared in the life stories and present these in a way that we can use to inform Health and Social Care Policymakers and Practitioners.

Before joining the Alliance, Christopher graduated from the University of Edinburgh with a degree in Politics, and worked monitoring Scottish Parliamentary Committees and Debates for a public affairs agency.

Further Information

For more information on our project, please visit http://www.alliance-scotland.org.uk/get-involved/view/dementia-carers-voices/, or alternatively contact tommy.whitelaw@alliance-scotland-org.uk or christopher.doyle@alliance-scotland.org.uk

Monday, 22 April 2013

Sunday, 21 April 2013

Today ,speaking at Improving Links in Primary Care Meeting

Monday, attending, speaking at Improving Links in Primary Care Meeting

With great thanks to Christine Hoy for inviting me to attend and speak  at the Improving Links in Primary Care Meeting on Monday at the ALLIANCE  Scotland 
I look forward to attending and speaking about life caring for my mum Joan, the letters I receive and People I have met on my tour


Posted on April 21, 2013
It’s a terrible thing if support is there for someone in need but they don’t get it – they miss it because connections are not made. There are fantastic initiatives all over Scotland as people in communities “just get on with it” and formal and informal groups, the NHS and Third Sector provide a mass of support. But how do you get to find out about resources when local relationships have not been formed and the information is disconnected?  This is a particular problem in primary care, where staff are in great position to point patients to support, but they need to know what’s there, where is it and who’s providing it!
This is why we’re gathering on Monday afternoon at the Alliance hub in Glasgow – to consider the role of a link worker and the processes involved in signposting which connect primary care with assets in the community. We’ve gathered people working in link worker projects (also known as community catalysts, community agents, local area coordinators, social prescribers, signposters etc) and others who want to learn more. Are link workers only needed in more deprived areas – is there a need for this connecting role in more affluent areas?  ALISS can play an important role by providing staff with quick access to resources, and connecting information crowd sourced by local people and organisations.
First we’ll  hear from Tommy Whitelaw, who will describe his experience of seeking help to care for his mum who had dementia, and from 4 projects from across Scotland.  We will then form groups to discuss scenarios provided from real experience of Dr Peter Cawston, of Drumchapel Medical Practice. The stories will be an excellent way to consider different aspects of signposting and link workers – the benefits and challenges involved.
Then we will report back after what looks like being a really interesting meeting.

Collecting my filmed interview for NHSGG&C tomorrow

Collecting my filmed interview for  NHSGG&C tomorrow

A few weeks ago I was filmed and interviewed by Dan Harley from NHSGG&C for a carer engagement film to be used at nursing practice development events and staff training .I will be meeting Dan tomorrow to collect a copy of the DVD .the film will I believe be available on line soon via the NHS community engagement team web site ,if so I will put up a wee link
Thank you to Dan and Con from NHSGG&C the opportunity to share some of my thoughts and experiences caring for my wonderful mum Joan

Saturday, 20 April 2013

Home from speaking at Labour Party Conference carer’s fringe meeting Inverness

After a whirlwind 3 days its 10pm and I am back home .I left Glasgow just before Midnight on Thursday on the sleeper Train to London for two talks on Friday The first of which was at the Alzheimer show followed by speaking at the launch of the Camden dementia Plan at Camden town hall (you can view my previous posts at the links below re both events
After the two talks in London I got the sleeper train to Inverness to speak at a carer’s fringe event organised by shadow health secretary Jackie Baillie. I feel privileged to have had the opportunity to speak at all 3 events big thank you to all who took time to attend, today also gave a great opportunity to meet and chat with Msps, City councilors and many across the care and voluntary sector in attendance and who had stands .so a lot of time on trains, traveling but most importantly I hope raising awareness. So back home now and I will start on Monday contacting many of the people I met to look for I hope more opportunities to attend speak or raise awareness, at future events
Please see below some photos from today and links to the 2 talks on the day before

Friday, 19 April 2013

Inspiring day at Camden Town Hall

I headed across town after my talk at the Alzheimer show to attend the launch of the Camden Dementia Plan and  dementia awareness event at Camden town hall in the town chambers
The Day was set up Cllr Meric Apak and hosted by the Mayor of Camden .I felt very privileged to be invited as one of the guest speakers to share my experiences caring for my mum along with Norman Washington also a son who cares for his mum and Lives in Camden .it was great to see and more importantly hear from Professionals the health and voluntary sector and carers all discussing together experiences, aims and outcomes
.I wish all involved the very best with the Camden Dementia Plan launched today  

I met some amazing new people/ friends today and was great to meet people I have got to know via twitter such as Gary from AGE UK Camden. Thank you for inviting me along and for allowing me to share part of my story at today’s event also a big thank you from a son to Norman for sharing his story and to Caroline for all her hard work event and looking after us so well

A few photos below from today’s event, heading to get the sleeper to Inverness to speak at the labour party Conference tomorrow

Thanks to all at the Alzheimer's Show London

After a longer than expected train journey thanks to the train breaking down  I finally arrived better late than never in London this morning to speak at the Alzheimers show

A big thanks to Sara and the events team for their kind invitation and the opportunity to share my story of caring for my mum and the life stories of those who wrote to me with their audience. Thanks also to all who came along and took the time to stop by and speak to me afterwards.

Im making my way across town to Camden town hall where I have been kindly invited to speak at their dementia awareness event, then jumping back on the train up north to speak at the Labour party conference in Inverness.

A very busy couple of days, and Im very grateful to all of those who have set up these opportunities for me to raise awareness and share this story as widely as possible


Today 2 talks London, Alzheimer show and Camden Town Hall then speaking labour Party conference Inverness

On April 19th I will be in London for the day (getting the overnight train from Glasgow on 18th) to speak at 2 events both of which I feel honoured to attend and speak at .In the morning I will be speaking at the Alzheimer show and early evening heading over to Camden to speak at a dementia awareness event being held by the mayor of Camden and Councillor Meric

I am grateful to all for the invites and I look forward to speaking about life caring for my wee mum, dementia, the letters I receive and the people I meet on my tour

You can get more details on both events at the links below .I will then be getting the overnight train to Inverness to speak at the labour party conference

The Alzheimer show 1pm

Dementia awareness event Camden town hall 5pm

Labour party conference April 20th 

With thanks to First Group Scot rail (Jannine and Theresa) for the tickets to get me down to London and home 

Tommy WhitelawDementia Carers Voices
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Tommy WhitelawDementia Carers Voices

Thursday, 18 April 2013

Away to raise awareness, first nights not at home for years

Well I am getting the overnight train Glasgow to London tonight for two talks, the Alzheimer show and Camden town hall tomorrow, then tomorrow night the overnight train London to Inverness to speak at the labour party Conference at a carer event, packing my wee bag a nervousness came over me I don’t stay out I don’t go out at night  
Caring for my mum for 5 years and since mum passed away most of my awareness work was done during respite hours in the daytime and that has continued since mum passed away ,I have done a few talks at night but not many. In fact when caring for mum I only left my house at night 9 times over the 3 years each time to do a talk and even on my walk round Scottish towns and cites to raise awareness I got the last train home each night, then the first train to the next city each morning in case mum needed me.
For the twenty years before dementia and caring for mum I toured pretty much 10 months of each year,it was coming home and not on the move that made me uncomfortable ,Tonight I almost have  butterflies to be going out and staying out even if that is just on a train ,Tonight has cemented the pain of how lonely and isolated mum and I where for so many years when this is the first night staying out for nearly 4, last week the meal at someone’s house the first dinner out for years and tonight the first night out and away for a couple of days in years .It makes me sad inside how imprisoned we and so many others are when needing care or caring. Even now when I can go out, I really don’t know how to .this isolation and loneliness families face is dreadful looking back I don’t know we made it, but then we never really did
For so many years I was never really home ,now I don’t know how to go out

Today,Speaking Camden town hall Dementia Awareness Event with thanks to Mayor Camden Meric Apak


With great thanks to councilor Meric Apak  (social care exec Camden ) and  the Mayor of Camden  for inviting me to speak at their dementia awareness event /discussion on dementia and caring

Councilor Meric Apak got in touch after reading my blog about my wee mum, dementia and caring and asked if I would speak at an event the council are organizing

I look forward to speaking about caring for mum, letters and life stories, Once again great thanks to Cllr Apak and the Mayor of Camden

Dementia Awareness Event – Council Chamber – Friday, 19 April

Speakers:  Mayor will open the event and give some background to the event and introduce speakers.

Speakers are invited to join the Mayor in the Parlour at 4.15 pm to meet other speakers and for a general briefing on the event.

·         Councillor Pat Callaghan, Deputy Leader and Cabinet Member  for Adult Social Care and Health
·         GP – Dr Caz Sayer, Chair of Camden Clinical Commissioning Group
·         Tommy Whitelaw, Dementia Carers Voices
·         Camden Dementia service Carer Norman Washington – Bier.  He cares for his mother
·         Robert Holman, Strategic Commissioner, Mental Health Care for Older People (HASC)

Order of Proceedings:

Council Chamber:
Tommy Whitelaw film to be screened in Council Chamber as people arrive http://tommy-on-tour-2011.blogspot.com
4.30        - Mayor to open discussion in council chamber and introduce panel of
                 Speakers and to invite Cllr Meric Apak to say a few words about why
                 he asked for this event to take place

4.35        - Cllr Pat Callaghan (to talk about the Dementia Plan, its aim and
                 objectives/key stakeholders and Camden’s plan and commissioning
                 priorities – briefing note provided)

4.40        - Norman Washington – Camden carer

4.55        - Tommy Whitelaw – will speak about his personal experiences as a carer
5.25        - Dr Caz Sayer, Chair of Camden Clinical Commissioning Group

5.40        Q&A session – managed by Robert Holman, Strategic Commissioner,
               Mental Health Care for Older People  (HASC) 

5.55        Summary of issues raised and how issues raised today will be taken

6.00        refreshments will be provided on civic floor

6.30         close

Caroline Bartram
Democratic Services Project Officer
Democratic Services
Law and Governance
London Borough of Camden

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 ...