Today final meeting re “IT’S OK TO ASK “Carer engagement film

Monday final meeting re “IT’S OK TO ASK “Carer engagement film

Hi

Well we have a final meeting re “IT’S OK TO ASK “ the Carer engagement film launched a few weeks back .just have to finalise formats for the DVD then we will be ready to share on – line and within the booklets for Gps and carer outreach groups

I hope the film help families reach h out and be more aware of the services available to them and helps professionals understand the difference the right support can make to carers and their loved ones lives

with thank to all the partners involved in the making of this film NHSGG&C -ALLIANCE Scotland 

Alzheimer Scotland (funding was received via nhsgg&c -CHP  

You can get more info at the links below

Press release

http://tommy-on-tour-2011.blogspot.co.uk/2013/06/its-ok-to-ask-carer-engagement-film.html

“IT’S OK TO ASK “ the making of

http://tommy-on-tour-2011.blogspot.co.uk/2013/04/friday-more-filming-its-ok-to-ask-carer.html

Tommy Whitelaw
Dementia Carers Voices

nhsgg&c -chp 

Introduction to Dementia Carer Voices Project Team

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

Today attending equal partners in care event Edinburgh

hi 

with thanks to Gill Ryan Project Lead (Carers Strategy)NHS Education for Scotland for the invite to the Equal Partners in Care (EPiC)  conference on Thursday 

you can get more details and ifo via the links below 

Equal Partners in Care (EPiC) is a joint project between NES and SSSC to implement the workforce education and learning elements of the Carers Strategy 2010-15.

We aim to support workers from health, social services and other sectors to work in partnership with carers and young carers, and to achieve better outcomes for all involved in the caring relationship. We will do this by providing learning resources to help best practice become universal practice.

The EPiC event will take place on Thursday 27 June from 12-2 pm at the COSLA Conference Centre in Edinburgh and will include lunch (see programme attached). 

 I’m also pleased to attach a pdf of the final core principles document and a link to the portal www.knowledge.scot.nhs.uk/equalpartnersincare or www.ssks.org.uk/equalpartnersincare. 

Can you help with our survey dementia - caring letters life stories ,thoughts ,opinions ,experiences

Hi 

as you may well know this campaign is built on the life stories of families .I have been collection letters life and love stories for the last year to feed to Goveremnt ,local authorities ,NHS and more

Our loves in our words We also have a survey to help us in our reports to Goverment 

You can view or fill in the survey at the links below or share you're story in you're words at tommy@i-woz-there.com 



 Are you a carer for someone with dementia? Share your experiences & key messages by completing our survey http://t.co/6KXAKm9rBH 

Thank you for the support and kindness 

TODAY speaking at nhsgg&c releasing time to carer event Hampden June 21st

 HI 

With great thanks to Kate Cocozza Lead Nurse Clinical Practice Development nhsgg&c Victoria Infirmary for inviting me to speak at releasing time to care event on June 21^st

Releasing time to care is a programme designed to help NHS staff design and spend more time with people whilst in hospital   

The event is to look of the programme and how effective it  has and  can be .I have been asked to speak as a son on how I feel time matters

Releasing Time to Care

“Celebrating Success …. Appreciating Improvement”

This event provides an exciting opportunity for a range of Senior Charge Nurses/Midwives/Team Leaders across NHS Greater Glasgow and Clyde to present aspects of their Releasing Time to Care journey showcasing improvements and successes that they, and their teams, have achieved along the way.

In addition to a keynote address from the Chief Executive, there will be an interactive panel discussion and an opportunity to contribute to the sustainability and future direction of RTC in NHSGGC.

The event is aimed at directors, senior managers, nurses, healthcare support workers and Allied Healthcare Professionals and will ultimately raise awareness of how RTC can assist motivated teams to work together to improve the quality of care/services and subsequently improve the care experience for staff, patients, carers and families.

Tommy Whitelaw
Dementia Carers Voices

A busy day St. Andrews house - talk at RCN Scotland then back to teamDCV workshop

Hi

I was up and out bright and early today to travel to Edinburgh. My first stop was a brief chat with David from the Scottish Government's Mental Health Team at St Andrew's house.We had a wee chat about how things are going and a few ideas I have for the future.

I then headed round to the Royal College of Nursing head office for a presentation to the board members.With great thanks to all for their time and enthusiasm also a big thank you to Dr Debbie McGraw from the board who invited me.

I then met with a student from Edinburgh University to do a quick interview for her dissertation and paper on dementia and journalism.

I then hopped on the train back to Glasgow to catch end of the ALLIANCE Scotland's network event where Dementia Carer Voices had one of the workshops and I have to say a big thanks to Christopher and Andrew for hosting the DCV workshop so well, it seemed that all had a great time. A big thank also you to Nancy and Kerry from the ALLIANCE  for putting together what seemed from the feedback to be a great network event.

I was sorry not to be there but had arranged my talk in Edinburgh a while back.

So I'm home now and getting organised for the NHS Releasing Time to Care Event at Hampden Park where I will have a wee stand for the day and I am also one of the guest speakers.

The awareness campaign goes on




Tommy

Today Presentation to Royal College Nursing Scotland board

SHi


With thanks to Dr Deborah McCraw from the Royal College Nursing Scotland for inviting me to do a presentation to the board in Edinburgh on June 20th

My passion is to raise awareness across the care sector and to universities ,colleges and schools .I look forward. To meeting the board and speaking about caring for my magnificent mum ,the life stories I receive and people I have met on my tour

I hope this presentation leads to opportunities to speak to nurses and nursing students connected with the Royal College of Nursing

you can get more information on the work they do at the link below

http://www.rcn.org.uk/aboutus/scotland

Tommy

With great thanks to RCN Scotland  for taking time to attend my wee presentation 

Thank you for the invite and kindness 

Dementia Carer voices 2 year project with the ALLIANCE with funding from the Scottish Government

Dementia Carer Voices

Dementia Carer Voices, managed by the ALLIANCE, is a two year project funded by the Scottish Government which harnesses the work of Tommy Whitelaw and recognizes the importance of the carer voice, in informing future service provision and in empowering carers themselves.

In June 2011, as part of his ‘Tommy on Tour’ campaign, Tommy Whitelaw, a carer for his late Mum Joan, walked around Scotland’s towns and cities to raise awareness of the impact of dementia on families and the difficult but vital role played by carers. Since then, he has engaged with thousands of carers through twitter, his blog and frequent talks to health and social care professionals and carers organisations across Scotland, allowing him to collect hundreds of life stories from people which detail their experiences of caring for a loved one living with dementia. The letters demonstrate that carers of people with dementia 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 to financial, to health and housing, as well as, cope with the distressing, social and emotional demands of caring.

As Project Officer with Dementia Carer Voices. Tommy continues to collect letters and stories and build on that work. The project aims to –

§  Capture the experiences of carers across Scotland with a view to informing future policy and service provision;

§  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;

§  Work with other carer organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users.

Outcomes

§  Establish a greater understanding of dementia and the carer journey among health and social care professionals;

§  Highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and enabling carers to ask for additional help when it is needed;

§  Reduce isolation of carers of people with dementia;

§  Increase awareness of carer rights;

§  Gather information supporting family and person centered approaches to health and social care.

The project will achieve this through visits and talks by the Project Officer Tommy Whitelaw to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media; and films to raise awareness/understanding. A Dementia Carer Voices survey is presently in operation via the ALLIANCE website to collect key carer information which will be captured and published to raise further awareness of issues of importance to carers. Evaluation feedback from talks to carer organisations is also available on the web and indicates high levels of satisfaction particularly from health and social care students about hearing the carer voice first hand.

Today Presentation to staff and management Sainsbury Prestwick a wee photo

Hi

I have been invited in partnership with south Ayrshire carer Center to do a presentation to area mangers and staff at sainsbury's  at the Prestwick  store on June 18th .with great thanks to David Roxborugh and the team at sainsbury's  for this opportunity to engage with management ,and staff and speak about caring for my wonderful mum ,the letters I receive and people I meet on my tour

There will be mangers and staff at the presentation and I hope we can roll this out across the country

Tommy

thank you to all the team at sainsbury Prestwick  for the opportunity today to speak to the team

Tommy

Fathers Day - my dad Thomas

Hi

This blog and campaign has my mum at the very heart and soul of it .and as much though does not define my mum , anything but, was her journey with dementia, a journey that broke my heart

My mums heart was surely broken many years back when my dad passed away ,my wonderful dad Thomas .I have often said what is crueller to die of a broken heart or not remember the reason your heart was broken
Now there was a love story .They where the best of parents and best of friends,I am sad but smiling typing this as I think of dad ,he was loyal hard working a true and honest man , a welder by trade , funny respectful and just the best of dads

Like mum children always  came first ,although as kids we used to get upset when asking who do you love the most ? Mum would always smile and say "oh my children " but dad  always said " I love my children and I am proud of you but this woman, I met her one day  and fell in love and have loved her every day since "  and boy did he lover her

My dad was diagnosed with cancer many years back and on the day of the the diagnosis mum and him where sitting with the doctor as the news was broke that  he had less than a year to live .my mum fell to the floor in tears, as dad tried to pick her up the doctor said mr whitelaw do you understand what I have just said ,to which my dad replied, yes I do doctor but my wife is upset and I need to make sure she is ok ,not much I can do about the news but I can make sure Joan is ok

This wonderful man as always had been was so brave for the remaining  9 months of his life making sure we where all ok and that mum would be ok after he's was gone, preparing us in a way  that was only noticed after he was gone ,no fuss, no fear  I truly found out what courage and love meant over those last months .in quieter moments if we had a chat ,asking how he felt  he always just said ,make sure your mum is ok just make sure my Joan is ok don't worry for me son make sure mum is ok

I miss my dad so much ,often during the hardest days as mum became more ill ,I would always say to myself when struggling  if dad was here he would make it  better for mum he make if better for me

My dad always used to say how lucky he was to have met mum and at family patties used to sing to mum either " and I love you you so " or " for the good times" so as I sit thinking of dad on Father's Day I say how lucky I was to be his son , how I Loved him so and those truly where not just the good times but the best of times 

I was was a lucky boy to be Thomas and Joan's son

Today launching “it’s ok to ask “carer engagement film

Hi

The new carer engagement film I am in  is ready, we will be launching  today June 13^th at a city centre venue

The film is based in part  on my own experiences caring for my wee mum and many of the letters I receive .For me it’s of the greatest importance that we get families the correct and quickest support As a campaigner I am trying to engage with Government ,local authorities ,health boards to see what more can be done but also to promote services and support available to families.in My opinion  it’s a tragedy not to be aware of and on many occasions know who or how to ask for help ,this can often lead to crisis

I took the idea and script to NHSgg&c-chp lead Peter Daniels who took time to read some of the letters I receive and chat about people I have on buses, supermarkets on the streets and I am happy and grateful for his time and support to make this film .the film will go in a booklet to GPs across Glasgow and be used on partners websites .I also hope to do some public road shows to reach out to people and help inform them of the support available    

With thanks to NHSgg&c especially Peter Daniels and Jill Carson and the ALLAINCE Scotland for partnering to make this film possible and last but by no means least the courage’s carers who took time to tell their story of how when supports is put in place at the right time and with the right manner the difference than can be made

The launch will be June 13^th 1 pm please see more details at link below 

http://tommy-on-tour-2011.blogspot.co.uk/2013/04/friday-more-filming-its-ok-to-ask-carer.html

dementia carer voices June newsletter #carersweek

please find link to the latest dementia carer voices newsletter 

http://www.alliance-scotland.org.uk/fortnightly_updates/view/52/

It's ok to ask Carer engagement film press release launched today

Today sees the launch of a new DVD to reach out to carers in Glasgow to recognise the value of their contribution.. With an estimated 660,000 unpaid carers in Scotland caring for a family member, friend and loved one the short film highlights that 'It's OK to ask for Help.'

The film features Tommy Whitelaw who is well known in carer’s circles across the country for his relentless campaigning for services for people with dementia and their carers.

Tommy cared for his mum Joan and experienced first-hand what it is like to care for someone with dementia. Tommy collected carer stories around Scotland to raise awareness of the impact of dementia on families and the difficult but vital role played by carers.

In the film Tommy tells viewers "All carers in Glasgow have a shared experience: caring for a partner, mother, father, sister or brother and sometimes a neighbour or friend. Asking for support, advice, information and training can be the key to improving your life, health and wellbeing and that of the person you look after.  At the end of the day I found out that's it's OK to Ask."

ALLIANCE Chief Executive Ian Welsh said:  "Carers can often feel isolated and on their own, when caring for a loved one, this short film aims to recognise the importance of the carer’s voice and make them feel that they are not alone!"

NHS Greater Glasgow and Clyde, Glasgow City Council Social Work Services, Alzheimer's Scotland and the Health and Social Care Alliance Scotland (The ALLIANCE) commissioned the DVD resource for carers "It's Ok to ask for Help".  This short film has been supported financially by Glasgow CHP.

Chair of Glasgow City CHP Peter Daniels said:  "It is essential that carers know that help and support is available to them - that there are services which can help them deal with the everyday concerns to help alleviate some of the pressure and stress that automatically goes with looking after a loved one."

"NHS Greater Glasgow and Clyde works closely with partners and voluntary organisations to ensure that carers know it’s OK to ask for help, and the best way to access that help.  Carers need to be cared for too."

Councillor Kerr said: "There is hardly a day goes by without someone being diagnosed with dementia or having a stroke and a person close to them becomes their carer. This can be a distressing time for all concerned but we have found that people often shy away from asking help or don't know where to go to get that help."

"In Glasgow we have range of support services for carers and we have to make sure that carers know that help is available for them. We hope the DVD proves to be of great assistance in getting the message across and encourages carers to access support."

The film also includes footage of carers from Glasgow talking about supporting a family member with dementia and the benefits of accessing carer support services in the city.

Dementia Carer Voices, managed by the ALLIANCE, is a two year project funded by the Scottish Government which harnesses the work of Tommy Whitelaw and recognises the importance of the carer voice, in informing future service provision and in empowering carers themselves.

Glasgow City Carers Partnership provides a universal offer of information and advice to all carers in the city. Carers information and support line - 0141 353 6504 www.glasgow.gov.uk/carers

RELATED LINKS

STV
http://local.stv.tv/glasgow/magazine/229173-tommy-whitelaw-launches-new-dvd-to-help-carers-with-nhs-glasgow/

Real radio http://www.realradio-scotland.co.uk/my-real/news/carers-told-to-ask-for-help/9b2e6

With great thanks to Peter Daniels Jill Carson viv Paterson Matt Kerr  nhsgg&c  -chp for funding the film "its OK to ask 

Today attending carer’s event hosted by Cabinet secretary for healthAlex Neil June 12th

Hi

I have been invited to attend an event hosted by the Cabinet secretary for health Alex Neil in Edinburgh June 12^th as part of carer’s week. the event to celebrate carers week will be held Edinburgh Castle

I look forward attending and both meeting and celebration  meeting ,carers and people working across the care and voluntary sectors .the event is being held as part of carer week  in Edinburgh  to celebrate the carers ,

Tommy

A wee phone with Cab Secretary for health & wellbeing Alex Neil and my friend and mentor Irene Oldfather  

Speaking today to lead nurses Victoria royal infirmary #nhsgg&c #gettingtoknowme

hi

with great thanks to Con Gillespie lead nurse consultant nhsgg&c for setting up and inviting me to speak to lead nurses, acute services Victoria Royal Infirmary  Tuesday June 11th

I have been working closely with con on a few talks lately and will be helping over the next months roll out the new  "getting to Know me"  programme for use across acute services nhsgg&c

this new programme  is all about time and getting  to know the life and needs of people admitted to hospital.
something I am passionate about with my life stories campaign and work

our life ,needs, likes ,dislikes and much more are at the heart of "getting to know me ,so very proud and privileged to take part in the promotion any time i can

'Getting to know Me' is a Nationally developed document aimed at promoting excellent individual care for vulnerable adults.

It was launched as the preferred document to gain relevant information from carers about the needs, likes and dislikes of any vulnerable adults when they are admitted to / attending hospital.

 Hospital staff will now be asking carers to complete (with assistance of staff if required) and it will be used at the bedside during a hospital stay or when attending out patient services.

It will be helpful if carer's ask staff for a copy to complete when their loved one is admitted to a hospital ward, as staff will be able to supply once wards are stocked with copies.

We are confident this will enhance care and if used properly will facilitate better care for an individual's needs and reduce the risk of not addressing what they require.

 link to "getting to know me" document 

http://www.alliance-scotland.org.uk/news-and-events/news/2013/06/getting-to-know-the-person-not-just-the-patient/

tommy

This morning Attending GCU school of health ; life science away day

Glasgow Caledonian University 

School of Health and Life Sciences

DRAFT 1

Assets and Impact: or Impact and Assets

12-13 June 2013

Overall Away Days aim: to build our School and Partner core team for imaginative, aspirational, bold delivery of the School of Health and Life Sciences strategy ‘Toward 2020’.  

School 2020 Aim: to use our assets in education, research, practice and exchange to work increative partnerships to redress health and social inequalities.

Foundations of School Aim:  Assets based approaches to health improvement work actively with the values, skills, knowledge, connections and potential in our communities.  Compared to the ‘deficits’ or ‘treatment’ approach to the delivery of public services, they promote capacity, connectedness and social capital.  To move to an assets based approach as an integral part of the delivery of health and wellbeing requires a change in individual and organisational attitudes, values and practices.  It requires redressing the balance between meeting needs and nurturing the strengths and resources of people and communities to help embed a sense of empowerment.  Such an approach is complementary to traditional health interventions.

Extracts from Glasgow Centre for Population Health:http://www.gcph.co.uk/assets/0000/2626/GCPH_Briefing_Paper_30web.pdf

Away Day Objectives:

1.

Identify our HLS assets and those of our communities for maximum impact to meet our School aim of ‘using our assets in creative partnerships to redress health and social inequalities’ for our School Strategy ‘Toward 2020’

2.

What are assets and impact: identify how to productively grow buy-in, imagination, sense of direction from School colleagues and Partners (including users and carers, public, commercial and NGO’s) and continuity with changing people

3.

Increase appetite for being bold as we work on an assets approach to 2020: an interim phase in a long termprocess- project.

Venue: Science Centre, Glasgow 

Dress code: casual

Preparation:  All those attending will be sent papers below.  We recognise that students and users and carers may not have read them/understand them as well as School colleagues.

Papers:  GCU leadership behaviours

​Operational plan 2012-2013

​Asset based approaches for health improvement: redressing the balance

.​         

Carers week plans for Tommyontour #carersweek Dementia Carer Voices

Hi

This is carers week and I have quite a busy week via my Dementia Carer Voices  project #carersweek

Sunday

On BBC radio Scotland "the Sunday Show " interview about caring

Monday

Launch of  " our story" nhsgg&c filmed interview for internal staff training nhsgg&c

Finishing touches for new Carer engagement film "IT'S OK TO ASK "

Tuesday

Speaking Victoria Infirmary to lead nurses " getting to know me "

Wednesday

Attending carers event hosted by Cab secretary for health Alex Neil

Thursday

Launching new Carer engagement film for cares ,GPs ,ad on line access " IT'S OK TO ASK"

More to be confirmed soon

Link to interview today On t BBC radio Scotland the sunday show

Hi

I will be on the Sunday show this Sunday morning on BBC Radio Scotland for a short interview on caring .it was this time two years ago on June 6th I started my awareness campaign to collect life stories to try and raise awareness and was in fact interviewed back then about life caring for my wonderful mum and mums journey with dementia along with my plans to collect life stories and raise awareness

Much has changed since then ,My wee mum is no longer here and my heart feels broken .I now campaign in mums name and for the remarkable people who write to me ,have met and still to meet

I hope my campaign in some small way has helped raised awareness and will continue to do my best to do so 

You can tune in or get details via the link below 

For Joan whitelaw my mum ,my best friend who I miss each and every day



Interview starts 1hr into show at the link below 

http://www.bbc.co.uk/programmes/b007wbls

more new dates added ,the awareness campaign goes on

May 31^st speaking person centred care Conference S.e.c.c

June 3^rd attending Alzheimer Scotland annual conference

June 4th - Meeting Care inspectorate. Morning

June 4^th – speaking mental health & nursing students Dundee University

June 7^th joining attending steering group nhsgg&c acute services

June 9^th -on the Sunday show BBC Radio Scotland

June 10th – Launch our story (Thomas & mum) DVD NHSGG&C.

June 10^th -speaking lead nurses royal Victoria infirmary

June 13th attending GCU event science museum am  

June 13th – Launch “it’s OK to ask DVD NHSGG&C.

June 18th  - presentation to staff sainsburys .dementia ,caring 

 June 13th – Speaking to Aberdeenshire carers.

June 21^st -speaking at launch time to care nhsgg&c Hampden

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

June 20th – Presentation board RCN.

July 4^th -speaking London NHS education event details added soon

 August 8^th- presentation NES Scotland

On-Going Projects 

·       Working on soon 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.

New project to be announced end June, watch this space

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

Today Joining steering group NHSgg&c acute services

Hi 

With great thanks to Nhsgg&c in particular Con Gillespie  for inviting me to join the steering group with lead nurses senior staff and carers , " improving acute services " 

I have been a guest speaker for Con an many occasions over the last months and feel inspired by his enthusiasm to engage with and involve carers on future strategies and training 

I feel privileged to be involved 

Many thanks for agreeing to take part in  the above work. The plan is  to see if we can develop a working model to help improve the level of engagement and therefore improve experience of carers when family members with significant levels   are admitted to our hospital wards.

The meeting will be held on Thursday 6th June 2013, Royal Alexandra Hospital, University

.As I have said to you all it is vital that carers and senior ward staff work together to develop this, so that we can devise something that facilitates good relationships between staff and carers and helps meet their needs in a realistic way which accounts for the activity in our  wards.

I am hoping that by the end of the meeting we will have good positive way forward with something tangible that we can test in the wards and then evaluate.

I am really looking forward to the meeting, so that we can use all you expertise, knowledge and experience in helping to improve this key aspect of patient centred support.

Earlier today ,care inspectorate then speaking Dundee universitymentalhealth students

Hi

I am off to Dundee early Tuesday to meet with the Carer Inspectorate to chat about the letters I receive and people I meet on my campaign .We are also looking at possibilities on how we link in to each other ,so looking forward to the meeting and seeing where it takes us

After lunch I will be heading over to Dundee University to speak to mental health students ,the first of a series of talk I will be doing there

Big thank to the university ,lecturers and students for inviting me to speak about caring for my wonderful mum ,the letters I receive ,people I meet and my dementia carer voices project

Tommy

Thank you mike and all the students DUndee University for the opportunity to talk today 

Thank you to all who attended ,

Tommy 

#kindness #future

Scotland's new dementia strategy launched , link to strategy

Hi

Scotland's new dementia strategy was launched yesterday at the Alzheimer Scotland conference by Cabinet secretary for Heath Alex Neil and Alzheimer Scotland CEO Henry Simmons

I was at at the conference and really enjoyed the day , I would like to congratulate Alzheimer Scotland on a very inspiring day

You can view the new strategy at the link below and more about Alzheimer Scotland at the link bottom of the page

Scotland's new Dementia Strategy launched at yesterday's inspiring @alzscot conference

http://www.scotland.gov.uk/Resource/0042/00423472.pdf



www.alzscot.org

January 22nd a new project ,something special watch this space awareness #2014

Hi

Well I am so close to a wee project for january 2014 ,can't say much more at the moment ,as much as I am desperate to do so .All I can say is watch this space and it will all be based on letters ,life and love stories # dementia # caring #lifestories # 2014

The awareness campaign based on our lives in our words goes on

Tommy

This lonely house I call my home

Another busy week has passed ,and I hope more awareness has in some small way been raised .We put some finishing touches to the new carer engagement film "it's OK to ask " to be launched on June 13th and had some meetings to try and get some more project of the ground

Yesterday and today I was over at the Person Centered care Conference at the S.E.C.C. I was privileged to speak yesterday at one of the breakout sessions ,with great thanks to Shaun Mayer and Karen Gouldie for the opportunity and really enjoyed the two days ,speaking ,listening and meeting some amazing passionate peolpe

Sitting here tonight looking back, the loneliness that was such a big part of mums  and my own life over the last years slowly takes it grip .AS busy as I try and be I just don't know what to do with myself once home. There is is a sadness in my heart that never seems to leave,we became prisoners of this House as dementia took its toll ,and it still feels like. Prison in many ways

The realty is I just miss my best wee pal ,my mum ,and she really was my best pal ,I miss her kindness,care and smile and since mum passed away loneliness just got so much lonelier

Tommy

briefing paper my debate Scottish Parliament Dementia Carer Voices

Health and Social Care Alliance Scotland (The ALLIANCE)

Briefing Paper on: Dementia Carer Voices

Dementia Carer Voices

Dementia Carer Voices, managed by the ALLIANCE, is a two year project funded by the Scottish Government which harnesses the work of Tommy Whitelaw and recognises the importance of the carer voice, in informing future service provision and in empowering carers themselves. 

In June 2011, as part of his ‘Tommy on Tour’ campaign, Tommy Whitelaw, a carer for his late Mum Joan, walked around Scotland’s towns and cities to raise awareness of the impact of dementia on families and the difficult but vital role played by carers. Since then, he has engaged with thousands of carers through twitter, his blog and frequent talks to health and social care professionals and carers organisations across Scotland, allowing him to collect hundreds of life stories from people which detail their experiences of caring for a loved one living with dementia. The letters demonstrate that carers of people with dementia 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 to financial, to health and housing, as well as, cope with the distressing, social and emotional demands of caring. 

As Project Officer with Dementia Carer Voices. Tommy continues to collect letters and stories and build on that work. The project aims to –

Capture the experiences of carers across Scotland with a view to informing future policy and service provision;
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;
Work with other carer organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users.

Outcomes
Establish a greater understanding of dementia and the carer journey among health and social care professionals;
Highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and enabling carers to ask for additional help when it is needed; 
Reduce isolation of carers of people with dementia;
Increase awareness of carer rights;
Gather information supporting family and person centred approaches to health and social care.

The project will achieve this through visits and talks by the Project Officer Tommy Whitelaw to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media; and films to raise awareness/understanding. A Dementia Carer Voices survey is presently in operation via the ALLIANCE website to collect key carer information which will be captured and published to raise further awareness of issues of importance to carers. Evaluation feedback from talks to carer organisations is also available on the web and indicates high levels of satisfaction particularly from health and social care students about hearing the carer voice first hand. 

http://www.alliance-scotland.org.uk/get-involved/view/dementia-carers-voices/

Rights, Dignity and Respect

Dementia Carer Voices will continue to raise awareness 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 and legal standards in all processes and outcome measurements.

The ALLIANCE welcomes the fact that this is embedded in the National Dementia Strategy but feedback from carers would suggest that further outreach is required to promote carers’ rights and increase awareness. The ALLIANCE believes that this can in turn empower people with dementia and their carers and enable them to participate more fully in the decisions affecting them.

Emerging Key Messages

We welcome the work that the Scottish Government and its partners in NHS Scotland, local government and the third and private sectors are doing to improve support, care and treatment for people with dementia, their families and carers through the National Dementia Strategy (NDS) and the Carers Strategy for Scotland 2010-2015. There are, however, a number of themes emerging through our engagement with carers that we wish to highlight in the context of the debate, the review of NDS, and future development of the Carers Strategy.

“No one ever asked”
One of the most frequent concerns expressed by carers is that staff delivering care can sometimes “forget” the person inside the dementia. In order to deliver real person-centred care, it is imperative that staff know as much as possible about the lives, personalities, likes and dislikes of the people for whom they care. This enables staff to give care and treatment which meets their needs, and can therefore maximise quality of life. Recording life history information and understanding how a person lived before they developed dementia helps staff to appreciate how the person’s past affects their present life and behaviour, individualise the care of the person and help maintain their identity. 

“I look at them [people with dementia] and think I wonder what she did in the past. If we knew it might make some of us feel a little bit ashamed.” Nurse

“Many people simply saw my Mum as a wee woman with dementia and used that as their starting point, denying her the life she had led and could have continued to lead for as long as possible.” Tommy Whitelaw  
No consistency of care staff, need for sense of routine
It is widely accepted that familiarity and routine can assist in managing the symptoms of dementia, but a lack of continuity in staffing is still cited as a huge frustration by many carers who have witnessed inconsistent approaches in their loved one’s care and a lack of understanding of their needs. 

Too often carers experience inconsistency in staffing which does not allow for a person centred-approach to care. While extreme examples have made the headlines, frequently carers speak of having to repeat information to new staff on a regular basis.
“While I recognise the need for holiday cover, how many carers through the door is too many?” Carer

“There is a shortage of staff – people are brought in who don’t know the conditions of the service users they are caring for.” Care home staff member  

  
Having a friend or ‘buddy’ who is going through (or has gone through) the same experience “A helping hand along the way”
Caring for someone with dementia can be stressful because of the complex, unpredictable and progressive nature of the illness. This can have a profound social, emotional and physical impact on carers including an increased risk of stress related conditions, such as depression. Everyone affected by dementia has a unique story to tell and carers, by sharing their experiences can help to tackle the misunderstandings surrounding dementia and offer hope and advice to people in the same situation. Many carers have indicated an interest in obtaining training and support to better understand the condition and ways to cope with the difficult and challenging behaviour of their loved one. 

“It’s an emotional roller coaster which unless you have experienced, it defies description.” Carer.  
  
Difficulty in becoming aware of/ accessing services
Many carers talk about what they think would have been helpful or useful to know (or have access to) but that they only found out about much further into the condition and highlighted the immediate period post – diagnosis as being a crucial time for them. Some key comments raised included the need to have a very basic factsheet which signposts local and relevant support, and a step by step approach to resources for use post-diagnosis. Letters also highlighted the importance of the timing of support and intervention, as people are unique with different needs, and understanding of the condition and how it may affect them and their family. 

Finding out about/accessing services was described as:
“like trying to crack a secret code,” 
“like trying to break MI5,”

“I now know that help is there but you have to know where to look, no one comes to you with information or instructions.” Carer

The ALLIANCE recognises that the Scottish Government’s guarantee of at least a year’s worth of post-diagnostic support, coordinated by a trained link worker, has the potential to assist people greatly in this regard to prevent carers from reaching crisis situations. Implementation across all care settings, including care home and continuing care however, is vital.   
 

  
Greater recognition of the carer role amongst health and social care professionals
While we recognise the progress being by the Scottish Government through the “Promoting Excellence” framework, many carers still feel that their views and needs are overlooked by health and social care professionals and that their right to support the person they care for as full partners in the provision of care is not well recognised. Some carers highlighted positive examples of being involved during a hospital stay e.g. helping with meals or personal care, but it would appear that the approach to this varies from ward to ward, and hospital to hospital. Carers can provide vital information and support during hospital admission or investigation which can be very disorienting for someone with dementia. Involving Carers who wish it, in the day to day care and treatment of their loved one benefits both the person with dementia and the staff involved. The ALLIANCE believes that such partnership should routinely be the norm.  In this regard, the ALLIANCE welcomes the Scottish Government’s pilot of more flexible visiting hours in Scottish hospitals, which will allow those living with dementia to benefit from a familiar face to assist and to allay fears of being in an unfamiliar environment, and looks forward to it being rolled out at the earliest opportunity.
“As a carer it was recognised by professionals that my Mum would eat better and cooperate more with interventions if I was there to explain and assist. The fact is she trusted me.” Carer.

“Especially in (the) care of person with challenging behaviour who had terrible night terrors, it was helpful to have his daughter come in and settle him. Avoided need for any sedation.” Mental Welfare Commission.  

  
Greater understanding from employers
Carers face numerous challenges in continuing to work after a loved one is diagnosed with dementia and a large proportion of  letters were from carers who had chosen, or been forced to alter their employment circumstances in order to carry out their caring role. Employment is not just a source of finance and occupation; it often provides necessary social contact and intellectual stimulation and continuing work in some form may be beneficial to carers themselves. 
Raising awareness of dementia and its symptoms among employers would ensure that they are better placed to explore what steps can be taken to help the individual meet both caring and work commitments.   

  
Grief that never goes away
Carers’ letters indicate that the hardest part of their journey is not the practical challenge which they face on a daily basis, but rather the emotional impact of physically seeing their loved one in front of them but only getting occasional and increasingly rare glimpses of the mum and dad, husband or wife that they used to be. It is for this reason, that grief has been described as the “constant yet hidden companion” of dementia both for people with dementia and their families.

“The most difficult part is seeing them slip away, bit by bit.” Carer 

“The saddest, longest, goodbye.” Carer

This is but one of the unique challenges posed by dementia which often even friends and family don’t understand and thereby adds to the sense of isolation and hopelessness that many carers already feel. 
 


Across each of these areas the ALLIANCE recognises that there are pockets of good practice supported by a range of Carer Organisations. Despite this, individual carers can often feel lost and isolated and spreading good practice across particularly vulnerable and “hard to reach” groups is especially important.
Additional Information
There are currently 86,000 people in Scotland living with dementia, with the vast majority of support for these individuals being provided by informal carers.
Dementia is a long lasting and progressive condition, on average lasting 10 years – during which time the individual’s abilities and skills deteriorate, including memory, cognition, communication, decision making and activities of daily living. This can make caring for someone with dementia, a particularly difficult and different experience to for example caring for an elderly person who is physically frail. 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.

Carers in Scotland 
There are 660,000 carers in Scotland – 1 in 8 of the population.
Every day almost 500 people take on a caring responsibility – that’s 178,000 people each year.
3 in 5 of us will become carers at some point in our lives.
110,000 people provide over 50 hours of care per week. 
Over 250,000 people juggle caring with holding down a job.
By 2037 the number of carers in Scotland will have increased to around 1 million. 
Carers save the Scottish economy £10.3 billion annually – the cost of providing NHS services in Scotland.
The main carers’ benefit is worth just £58.45 for a minimum of 35 hours.
Three quarters of carers are struggling to pay utility bills and more than half are cutting back on food and heating to make ends meet.
Three quarters of carers say their health is worse because of their caring responsibilities.
Source: Carers Scotland
If you would like to discuss any of the topics raised within this briefing or to request any further information, please contact our project team.
irene.oldfather@alliance-scotland.org.uk: Programme Director
tommy.whitelaw@alliance-scotland.org.uk : Project Officer
christopher.doyle@alliance-scotland.org.uk: Policy and Information Assistant 
About the ALLIANCE

The ALLIANCE is the national third sector intermediary for a range of health and social care organisations.  The ALLIANCE has 270 members including 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’s vision is for a Scotland where people of all ages who are disabled or living with long term conditions, and unpaid carers, have a strong voice and enjoy their right to live well, as equal and active citizens, free from discrimination, with support and services that put them at the centre. 

Recently, the ALLIANCE received two years funding from the Scottish Government for the Dementia Carer Voices project.

www.alliance-scotland.org.uk

TEL: 0141 404 0231
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APPENDIX 1 TOMMY’S STORY
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.