From Crowded rooms to this empty house and heart

From Crowded rooms to an empty house and heart

The last two weeks have been the busiest of my campaign in many ways over the last two weeks I have been a guest speaker at 7 events along with quite a few meetings and a debate on my campaign at the Scottish Parliament. I spoke at Caledonian university, Cardonald College twice Aye College, Lockerbie carers was at Stirling yesterday and today with a stand and today also as a guest speaker. On Wednesday past I was through at the parliament with a stand and a member’s debate on the letters I have collected

It has been a hectic two weeks and I am grateful for the opportunities to raise awareness as this in my passion and to be honest I have not had much time to think between talks and travelling .I got home tonight and as I walked down the street looking at the house in darkness ,the emotions of the last weeks hit quite hard .I sat in the sitting room in the dark and it all got a bit much almost not wanting to walk up the stairs to the empty room that mum was confined to over the last months .And I just miss her

My wee ,mum in amongst our struggles and over the last 5 years was my best wee pal .I have spent the last weeks in crowded rooms speaking at events but in many ways papering over the cracks of a broken heart .And my heart IS broken .We suffered great loneliness over the last 5 years but I was never truly lonely not with my wee mumby my side , Tonight I feel lonely and so sad inside for a mum who deserved much better thank she got and to often I was able to give

I struggle sometimes coming home from crowded rooms to an empty house and this empty heart  and I miss my wee mum who no matter what she faced made sure her big boy was ok

Tommy

Thank you national person centred Health and Care Improvement Collaborative conference

With thanks to Shaun Mayer for inviting me to a speak briefly at the event below on day one  and attend day 2

Thank you all for a wonderful conference you can get feedback on twitter via #pcic2

You can get more details below and at the link bottom of page 

Aim of the event

The aim of this two day learning session is to bring people together from a variety of backgrounds to listen, observe and share learning around the values, behaviours and approaches that will help us to ensure that people are always at the centre of their health and care.

We will share examples of:

-Testing improvement in person-centredness at the point of care

- Leadership that enables person-centred care
- A comprehensive system that enables the voice of the people who use services to be heard in real-time and drive improvement. 
- Improvement methods to support testing of person-centred approaches so that people always have the opportunity to personalise their experience
- A simple measurement framework for person-centred care and a tool to support measurement and T besting for local teams

As a participant you will then take this knowledge back with you and begin to test improvements that will help you to continue on your journey to further develop person-centred practice.

This is a learning session in which all participants must come ready to connect and engage with other teams and participants. Over the two days the national team will provide the support, tools and space necessary for the participants to fully engage. It must be recognised that participants should be prepared to leave with a strong and clear plan for testing improvements on return to their own care context.

Who should participate?

Participants are invited to attend from across statutory health and social care as well as the third sector.  In addition in the spirit of co-design and co-production we would ask you to invite people with first hand experience of services to join us as we continue on our improvement journey.

We'll be delighted to see those teams who joined us for Learning Session 1 but also any new teams who are inspired to drive change and in particular from across all health and care sectors.

We will be delighted to have registration from staff across all levels in the NHS in Scotland, Local Authority and third sector organisations.

Each NHS Board area has a Person Centred Programme Manager for this work and they will coordinate attendance to ensure team representation so please make efforts to ensure that they are aware of your participation.

National Person-Centred Health and Care Programme 

https://www.eventsforce.net/eventage/frontend/reg/thome.csp?pageID=16517&eventID=48&eventID=48

Tomorrow Attending NHS Conference at the Crowne Plaza Hotel - Day One 11th of June

The programme focuses on a number of sessions which will provide you with lots of ideas and tools for collaboration and quality improvement in your area of work.

Overview - Day 1: 11 June

Time	Activity
08.45 – 09.30	Registration and Refreshments
09.30 – 10.45	Plenary Session 1 Welcome – Pennie Taylor, Chair Derek Feeley, Director General Health and Social Care and Chief Executive NHSScotland Professor Jason Leitch, Clinical Director, The Quality Unit, Scottish Government
10.45 – 11.15	Staffed Poster Viewing, Exhibition and Networking
11.15 – 12.30	Special Interest Mini Plenary Session MP:1 Safety, Collaboration and Spread Across Boundaries
11.15 – 12.30	A: Parallel Session 1
	A:1.1 Integration in Action
	A:1.2 Zen and the Art of Co-production and Asset-based Approaches
	A:1.3 Putting People First in Primary Care
	A:1.4 Achieving High Quality, Financially Sustainable Healthcare
	A:1.5 A Little Exercise a Day Keeps the Doctor Away
	A:1.6 Engaging Patients: The New Blockbuster Drug
	S: Event Supporter Satellite Session
	S:1 Lead to Succeed
12.30 – 13.30	Lunch Staffed Poster Viewing, Exhibition and Networking
13.30 – 14.15	Plenary Session 2 Early Years Gerry Marr, Chief Executive, NHS Tayside Bernadette Malone, Chief Executive, Perth & Kinross Council
14.15 – 15.30	Special Interest Mini Plenary Session MP:2 Many Voices, One Vision: The 2020 Workforce Vision
14.15 – 15.30	B: Parallel Session 2
	B:2.1 Achieving the 2020 Vision with the Help of the Third Sector
	B:2.2 Putting the Person at the Centre: Would the Esther Approach Work for Scotland?
	B:2.3 Collaborating to Give Every Child the Best Start
	B:2.4 Making Collaboration Real
	B:2.5 Innovating for Health: Game-changing Solutions
	B:2.6 So Just How Effective Are We?
15.30 – 15.50	Staffed Poster Viewing, Exhibition and Networking
15.50 – 16.50	Plenary Session 3 Maureen Bisognano, President and CEO, IHI
16.50	Close

Public Bodies (Joint Working) (Scotland) Bill - Parliamentary Business : Scottish Parliament

Health and Social Care Alliance Scotland

The Public Bodies (Joint Working) (Scotland) Bill has now been presented to the Scottish Parliament. The bill contains provisions to integrate health and social care.

Public Bodies (Joint Working) (Scotland) Bill - Parliamentary Business : Scottish Parliament

www.scottish.parliament.uk

Public Bodies (Joint Working) (Scotland) Bill

Meeting internal communication’s team NHSGG&C today ,to chat about projects

Meeting internal communication’s team NHSGG&C today ,to chat about projects

Hi

This morning I will be dropping in to see Susan from Internal communications nhsgg&c  to chat about some projects and ideas that I have .I have been a guest speaker at quite a few event’s organised by nhsgg&c over the l;ast months including nursing practise development events .along with on-site engagement and talks to staff  at

·        Sothern general hospital (5 talks)

·        Gartnavel  royal

·        The Vitoria infirmary

·        Beardmore hotel

along with meeting lead nurses and ward sisters and staff .I am grateful and inspired by the fact that our stories and experiences matters ,so thank you to all for taking the time to involve a son who careerd for his mum

Tommy

A lovely night, but why does if feel so strange

A lovely night, but why does if feel so strange

I had the loveliest of nights tonight, I was invited by a great friend Caroline and a new friend Jen and partner Joolz over to chat about projects and for some Dinner .we are all passionate about awareness, learning and hopefully helping bring more understanding and help in our own small ways .we had a good chat and worked on some ideas all three of us have and I hope learnt little things from each other ,I was certainly inspired ,I always am when I see Caroline and Jen has an appetite and enthusiasm that is lacking in many who do the same type of work

This was the first time in many years I had been to dinner at someone’s house it was the first time in many years someone had made dinner for me but underneath is how out of touch I am with social occasions and how isolated mum and I where from the social side of life .i spent my previous life before dementia and caring working hard, never as hard as my wee mum worked and I had a great social life. Tonight was so lovely, good food, great company and conversation but underneath a certain feeling of discomfort about being there and sadness in my heart of the nights we spent alone. Why does dementia and caring take away the company of others, why do we allow it. On the bus home all I could think about was how sad it was the great company of my mum was missed by so many after dementia knocked on our door

Thank you Jen Joolz and Caroline for a lovely night and helping a son find his way back from the loneliness we faced for to long

Tommy

Planning something special for January 2014 #awareness

Hi


Will I am at the very late and important stage in negotiations for something special January 2014
I can't say much more at the moment at just putting the final pieces of the jig saw together

I really hope it comes off .All I can say it is based on letters life and love stories , carers , families and some of the inspiring people I have met and yet to meet ,they  will be at the heart and soul of it

I don't think anything has been done quite like it  before in Scotland ,and I hope if it comes of it will inspire others and help tell the story of love ,people , the greatness of people

So fingers crossed for an event the takes me full circle from my previous life to present day



Tommy

Just one of those days ,

Hello

The last few weeks have been incredibly and thankfully busy .I have had  talks or meetings just about every day for the last 3 or 4 weeks (months really ) ,on a few occasions a couple talks in the same day

I kind of caught up with myself  today and it has been quite a sad day ,the truth is I just miss my wee pal ,it was just mum and me for the last years , facing all that dementia and caring brings ,the good days ,the hard days ,the happy days the sad days ,but always managing to pick each other up when times where hard

That was my wee mum to a tee ,even till the end that smile ,the stroke of the hand and on the days when I thought we can't do this this is to hard ,my mum changed it and propped me up to carry on .
And not even for her it was for me to make sure her big boy got through this even if she would not

It's been a tearful day today thinking back to chance missed and things that could have been better
And that's the thing that stands out the happy days are never as happy and the sad days are so sad it hurts .sitting here alone just now feeling sorry and sad would never have lasted as long as it has today ,my wee mum would had changed that with a knowing smile or a stroke of the hand

I just miss you mum ,I miss you so very much


Tommy

Speaking mental health students Dundee University June 4th

Hi

With great thanks to mike Ramsay lecturer on mental Health at Dundee Universty for inviting me to speak to mental health students on June 4th .I will also be speaking to nursing , mental health and social care students there over September and October ,but an opportunity has arose today due to a cancellation and I have very quickly offered to step in

I happen to be in Dundee that morning to meet with the Care inspectorate so seems like it was meant to be

Thank Mike and all connected to the universtiy for the invite

Tommy

For the love of mum -8 months ago today my mum Joan Whitelaw Passed away

Today will be 8 months since mum passed away and in many ways the prison sentence we felt towards the end continues, but now it continues alone.  We became prisoners of Dementia in our home, were we were isolated from society in many ways.

Some people say time is a great healer; I just don't believe them I really don't.  Time just gives me too much time to think, I try to keep as busy as I can increasing my awareness work started, which from this house whilst caring for mum.  But that's where it stops every other hour is a return to isolation and it’s hard to break that and that's what we faced, how we lived for many years

My social skills seem non-existent and I can stand in a crowded room and speak from my heart about the greatness of my mum, the challenges we faced, the joy in her smile, the pain in my heart, the strength mum gave me and the helplessness I felt I don't seem to know anything else.

As hard it was my wee mum always made it better, that's the greatness of mums they make sure their children are OK and even if they are no longer children and supposed adults like me.  That's what I miss, her friendship, smile, kindness, strength and love.  I most certainly do not miss Dementia not the last years, no not this son.

I miss her love as she became my best wee pal even though I used to have so many, as mum did also.  But Dementia, loneliness and isolation took their place.  I suppose I just might be feeling sorry for myself tonight in this house that no longer feels like a home, but I will get up tomorrow to keep my promise to my mum to raise awareness a promise for the love of mum.

Tommy

my filmed interview caring for mum - Acute services nhsgg&c ,our story

Please see below the link to my filmed interview for acute services training nhsgg&c

Caring for mum our story 

http://www.youtube.com/watch?v=36_Y_3y0yXM



With great thanks and respect to Dan Harley and Con Gillespie

I was interviewed as part of a DVD on caring about life caring for my wonderful mum Joan Whitelaw

 Link to  My filmed interview caring for mum , acute service training http://t.co/JCCONYwgmY nhsgg&c #formum #dementia 

Dear Tommy,

I wanted to update you with more information about the launch of the Patients’ Stories Library films including your interview.

The Patients’ Stories Library DVD for NHS hospital staff will be launched during Carers week (10-16^th June 2013). It will be comprised of 5 films including your interview and a film where Rory Farrelly explains what it is that we are trying to achieve through the use of patients’ stories as a way of learning how we can provide an even better service.

We plan to have a set of linked communication activities in the lead up to and during Carers week and distribution of DVD discs will take place before then to fit in with the timing. Your film will also be used by our Acute Health Improvement Team as part of an information display on the theme of carers that will tour several acute hospitals sites.

Many thanks again for your contribution to this,

Best wishes,

Dan

Dan Harley

Report ALLIANCE Scotland Conference Being Human a human rights based approach to health and social care Scotland

Hi 

please see below the link to the ALLIANCE Scotland report on their annual conference   "Being Human a human rights based approach to health and social care Scotland "

Dementia carer voices had a workshop at the conference you can read more at the link below

thank s to all involved for a wonderful day and to Andrew and the team for producing and sharing the report at the link below 

tommy   

: http://www.alliance-scotland.org.uk/news-and-events/news/2013/05/alliance-annual-conference-2013-being-human-event-report-published/

Thank you thirdforcenews.org.uk for the article

TOMMY WHITELAW: Care campaigner, Tommy on Tour

BACKCHAT — BY SSMITH ON 16/05/2013 10:18 PM 

IT’S the letters that mean most to me. They tell stories of the people behind an illness that eventually took over their lives. But the letters are all memories and it is those memories I’ll fight to preserve.

Tommy on Tour started after my own mum, Joan Whitelaw, was diagnosed with vascular dementia about six years ago. I was a merchandiser for some of the world’s biggest rock bands and spent most of my time abroad. But when I came home from tour one day to see my mum, as I never failed to do, my whole life changed.

Diagnosed with dementia, she needed full-time care. Those five years were tough, the worst of my life but when she died in September last year I reflected on what a wonderful person she was, a person who created memories for us all that an illness could never erase.

Tommy on Tour is about raising awareness for dementia and to preserve the memory of people like my mum and to support the people who care for loved ones. For five years I felt isolated. I didn’t know what help was out there or who to turn to and often it felt like a battle.

So I give talks in schools, in care homes, in universities and to MSPs across Scotland raising awareness and saying that you don’t have to be alone. My message is simple: this army of carers in Scotland are worthy of support but are desperate for it at the same time.

In some ways this campaign is my own therapy and a catharsis too. People get in touch to tell me how my story inspired them to seek help or how by realising others are in a similar position, they are not isolated.

When I go home at night, to the house I shared with my mum, that’s when the loneliness is worst. It makes me think of other carers and how they cope. I just want to tell them they might feel alone but they are not. There are thousands of others in Scotland who can empathise and understand their situation.

www.tommy-on-tour-2011.blogspot.co.uk

No related content found.

My mums name was Joan Whitelaw - the awareness campaign goes on # dementia

My mother’s name was Joan Whitelaw. She was born on the 15th of July 1939. She had been: a daughter, a sister, a wife, a mother, a friend, a workmate, a neighbour, a valued member of her community, and a true, honest and dignified lady.
Like so many others of the 86,000 people across Scotland, however, she was labelled as ‘a wee woman with dementia,’ a condition we, at this time, have no cure for. As a result she was written off, given no value and most certainly not given the respect and care she deserved.
Six years ago, I walked out of a hospital with my mum after her diagnosis of dementia and we walked out alone, with no support. At another critical moment on our journey, an evaluation of mum’s condition and medication, we were told “there’s not much more we can do” and “it’s time to consider residential care.” Again, we left alone.
We were alone for much of our tragic journey and for this reason I am committed to raising awareness of the impact of dementia on families, and the vital role played by carers, so that nobody else in Scotland should have to go through the caring journey experiencing the loneliness and isolation that I did.
Finally, I would like take this opportunity to thank all of the carers, families, and carers’ centres who have inspired and supported me over the course of my awareness raising campaign.

tommyontour: Poem for MUM ,Thank You Abby for inspiring a Son ...

tommyontour: Poem for MUM ,Thank You Abby for inspiring a Son ...: I had the privilege of speaking to mental health students at Caledonian  university last week .I have been both inspired and in tears at the...

Launching 2 films -carers & dementia awareness week June 2013

Hi

I will be in two new films being launched June 10th & 13th 2013 to coincide with carers week and dementia awareness week

Film 1

Launch June 10th

This is part of nhsgg&c patients stories ,I was interview about caring for my magnificent mum Joan ,this film is part of a set of 4 for acute services training  .With thanks to nhsgg&c community engagement team especially Dan Harley and Con  Gillespie   


link to interview 

http://www.youtube.com/watch?v=36_Y_3y0yXM
http://tommy-on-tour-2011.blogspot.co.uk/2013/05/our-story-part-of-patients-story.html


Film 2

Launch date June 13th

This film "IT OK  TO ASK " is a partnership with nhsgg&c -chp ,GCC ,alliance Scotland and service partners .I took the idea to Peters Daniles and Jill Carson from Nhsgg&c -chp and its based in part on my own experience caring and from the letters I receive

The film will go in a booklet  the GCC pathways services to GPs across Glasgow for carers and on partners websites ,with thanks to the above along with the steering group including Ann CUmmings ,VIv Paterson (SW Glasgow) Cathie Beatie (Alz Scotland ) and the amazing carers who shared thier stories in order to help others

http://tommy-on-tour-2011.blogspot.com/2013/04/friday-more-filming-its-ok-to-ask-carer.html
I do a wee voice over to tell the story and introduction to the carer stories

Tommy

Today meeting GCC dementia working group as per my motion

 Hi

The 3^rd meeting of the Glasgow City council cross party dementia working group as per my motion passed last February .I look forward to meeting all who attend ,this motion was passed on the life stories I received from families living with or caring for a loved one with dementia

You can get involved by sending your thoughts, opinions or life story to tommy@i-woz-there.com  our lives our words can help others

Tommy   

MOTION

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.

Moved by

Councillor John Flanagan

Seconded by

Councillor David McDonald

I have been invited to be the Carers Representative on this group.  there will be a representative from each party, Head of Social Work, Alzheimer Scotland and the North Dementia Forum among-st others 

ITINERARY January – June 2013 mid term report

ITINERARY January – June 2013

Blog/Twitter/Facebook

·       My blog gets 9500 hits per month sitting on 101, 000 views at the moment.

·       My film on a separate server has had nearly 40,000 views.

·       The story of my campaign, my film and blog is now on 30 sites across the world.

·       I have had articles in most national newspapers and have received hundreds of life stories to date.

Update on where I am at since receiving funding at the beginning of 2013:

January 4th – Meeting with Glasgow Carer Champion Dr Christopher Mason at Alliance office.

January 7th - Article on campaign STV local.

January 9th - Meeting with Samantha Flowers re Art project then with Councillor Kerr re Carer Engagement.

January 10th - Attending Dementia Dialogue event Paisley (a discussion on Scotland’s Dementia Strategy).

January 15th - Meeting with Emma PRTFC.

 January 16th - Meeting Prof Debbie Tolson UWS.

January 17th - AM speaking at RAD Directorate Victoria Infirmary to assistant charge nurses then through to Parliament to meet CAB sec for health Alex Neil 1pm. Also meeting later with Jackson Carlaw (Con) 2:30pm.  Jim Hume (Lib Dem) 2pm and Jackie Baillie 4pm.

January 21st - AM meeting Linda Pollok carers.

January 22nd - PM meeting Daniel NHS Community Engagement Team.

January 22nd - Meeting Jim Pearson Alzheimer Scotland.

January 24th - Attending GNEC meeting.

January 30th - Meeting re Carer Engagement Film City Chambers with NHS GG*C CHP.

January 31st - Meeting art in the Gart.

  

February 2nd - Speaking at Healthcare Conference Biggar via Jim Hume Lib – dem Healthcare spokesperson.

February 3rd - Time TBC interview with Sally Magnuson BBC radio Scotland re- Aired.

February 5th - Meeting Baillieston Community Carer.

February 6th - Meeting carers Alzheimer Scotland South Ayrshire Carer Group.

February 11th - Meeting Gail Glasgow South - West Carers. 

February 15th – Speaking at Caledonian University 3rd year mental health students.

February 15th - TTBC meeting Carer Engagement Film.

February 18th - Meeting CAB (Morning).

February 18th - Meeting at Cardonald College re talks.

February 19th - Speaking at South Ayrshire Carer’s Dementia Awareness Day.

February 20th – Speaking to 1st year mental health nursing student’s Caledonian University.

February 21st - Attending Carers Link Milngavie.

February 21st - Meeting new Carer Engagement Film – “ITS OK TO ASK”.

February 22nd – Scottish Dementia Working Group Glasgow City Council 2nd meeting as per my motion passed. 

February 26th - Stand at Murryfield via Prof June Andrews.

February 26th - Meeting Prof Debbie Tolson re book.

March 2nd - Attending Dementia Dialogue Event.

March 3rd - Attending GCU healthcare event.

March 4th - Meeting Care Inspectorate.

March 5th - Speaking at Cardonald College.

March 5th - Speaking at 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 at Ayr College Mental Health Students.

March 20th - Members Debate at Scottish Parliament Dementia Carer Voices. 

March 21st - Attending with stand SDRCN Conference Stirling.

March 22nd - Speaking at SDRCN Conference Stirling also having stand.

March 26th - Filming “it’s OK to ask”

March 27th - Filming “it’s OK to ask”

March 28th – Speaking at Reid Kerr College. 

April 1st - Re –airing BBC interview with Sally Magnusson.

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 in Ayr.

April 19th – Morning speaking Alzheimer Show London.

April 19th – Afternoon 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 – Speaking at Life Changes Trust Launch.

May 1st - Alliance Conference Perth hosting Dementia Carer Voices workshop.

May 2nd – Speaking/Attending carer’s strategy event N/ Ayrshire council.

May 3rd - Final filming “it’s ok to ask” NHSGG&C.

May 7th - Speaking Reid Kerr College morning.

May 7th - Meeting Julie Christie afternoon.  

May 17^th – GCC dementia working group as per my motion

June 13th – Speaking, Aberdeenshire carers.

June 4^th - Meeting Care inspectorate

June 10^th – launch our story (Thomas &mum) DVD NHSgg&c

June 12^th Attending Carer event hosted Alex Neil Cab Sec for Health

June 13^th – launch “it’s OK to ask DVD NHSgg&c

  June  2oth – Presentation board RCN

On-Going Projects 

·       Academic/Educational paper with a leading university on the life stories.

·       Carer Engagement Film working title “it’s ok to ask”

·       Glasgow City Council Dementia Working Group based on my motion passed last February.

·       March/April Filming “its ok to ask” a new Carer Engagement Film with NHSGG&C –CHP

Talks

I have many talks lined up across the NHS and Universities based on caring for my mum and the life stories.

You can help make all of the above all they can be by sharing you’re story, thoughts, opinions or experiences good or bad at tommy@i-woz-there.com