Thank you Jen and all who took time to attend today at the Royal F reeHospital

Hi 

It has been a long but very worth while day today ,I left Glasgow early this morning for the first of two talks down in London and Cambridge 

Today I had the privilege of speaking to staff , and carers connected with the Royal free hospital 

A big thank you you Jen Kenward patient  experience manager for the invite and to all who took time to attend ,thank you all for the opportunity and kindness 

On the train to Cambridge now to speak at the Health education East of England conference with great thank toy Rebecca from NhsEoE  for the invite 

Been a long day but worth every second to meet the inspiring kind people I met today looking forward to bed and tomorrow 

Today privileged to attend and Speak at Health Education East of England (HEEoE) conferenceCambridge

Hi

With great thanks to Rebecca Webber from Health Education East of England (HEEoE) for inviting me down to speak at their staff conference being held in Cambridge on July 4th.

I look forward to both attending and speaking about my mum ,dementia ,caring ,the letters I receive and people I meet on my awareness tour.

I would also like to say thanks to Rebecca and all the team at HEEoE, for inviting and including a son and carer to the event.

I will add more details later once receive, but you can get more information on the work they do at the link below.

Thank you,

Tommy

Health Education East of England (HEEoE) is the Local Education and Training Board that covers Bedfordshire, Hertfordshire, Cambridgeshire and Peterborough, Norfolk, Suffolk and Essex. Our staff are generally administration services, a few of which do have clinical backgrounds - but we are not frontline patient-facing. Formally Established on 1 April 2013 as a subcommittee of Health Education England, HEEoE's aim is to ensure the security of workforce supply and continuously to improve the quality of education, training and development in the east of England. We also aim to enable the health and care workforce to respond effectively to the needs of patients, carers and families. Our website is here:  http://eoe.hee.nhs.uk/

Dementia & caring through art - Project Outline and application

Hi,

I will know within the next month if my dementia through art project, based on the letters I receive and people I have met, has the backing and go ahead.

Hoping we can agree a way to fund people for the ideas below and help tell the story of dementia and caring in a way that comforts, inspires and raises awareness.


Project Outline

Art students

Develop a brief for a group of art students to create a space which brings comfort, hope and inspiration to all who visit the hospital or work there based on the letters and life stories collected during the campaign ( I believe if we work with the students on some of the life stories they will produce art that helps comfort and will inspire all who view).

Carer groups

Work with carers /families who attend carer groups form across Cities /towns ; north, south, east and west, encouraging them to come up with ideas, sentiments and inspiration to create a Carer’s space in the corridor.

Local art students will be sought to work with the groups if required to bring their thoughts and ideas to life.

Design students

I have identified a couple of students working on a dementia, residential care design course who are keen to get involved in the project.

I believe if we can bring all of the above together and agree a plan work can be done that will inspire all who view.

I also believe this will raise positive awareness and positive publicity for the hospital and NHS. 

Involving families and the next generation of artists in this project will I hope help and inspire others along the way and I believe involving carers and carer groups will inspire local communities and the people involved.

Tommy  

Collecting life stories raising awareness

Today speaking London Royal Free Hospital

Hi 

With great thanks  to Jennifer Kenward, Patient Experience Manage, Royal Free hospital London  for inviting me to speak to staff whilst in London to speak at the NHS England education conference. I had a free night before the conference and Jennifer kindly answered my plea for somewhere on the evening of the 3rd to raise awareness. 

I look forward to both meeting and speaking to staff about caring for mum, the letters I receive  and people I have  met on my tour.

Thank you Jennifer, and all the team for the opportunity and kindness. 

Tommy 

Jenny Kenward

Patient Experience Manager

Royal Free London NHS Foundation Trust

+ Royal Free London NHS Foundation Trust, Pond Street, London NW3 2QG

Dementia Carer Voices project outline

Dementia Carer Voices

Reaching out to carers of people with dementia and giving them a voice through a “letters campaign” has been part of the awareness raising activity of Tommy Whitelaw, who has experienced first hand what it is like to care for someone with dementia. Tommy has also made a film about dementia and caring for someone with dementia with a view to reaching a wide audience in the UK and beyond.  Read Tommy's blog .

Dementia Carer Voices builds on the awareness activities from 'Tommy on Tour ' .This ALLIANCE project has been made possible with funding from the Scottish Government.

The ALLIANCE recognises the importance of the Carer Voice in informing future service provision and in empowering carers themselves. To this end the Dementia Carer Voices project aims to

• Harness the work undertaken to date, particularly by the Tommy on Tour campaign
• Develop this by supporting Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland

In doing this, the ALLIANCE will highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and feel enabled to ask for additional help when it is needed;

• Capture the experiences of carers across Scotland with a view to informing future policy and service provision
• Raise awareness of the issues around caring for someone with dementia including among health and social care students
• Empower carers by providing information based on the Charter of Rights and Carer Strategy about caring for someone with dementia
• Highlight the role of Carers as natural resources; Carers as people with needs; Carers as people with independent live
• Work with other Carer Organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users. (As a network organisation which includes organisations such as - Alzheimer Scotland, Carers’ Coalition and Age Concern within our membership, we are well placed to undertake this role).

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

Read the first issue of the Dementia Carer Voices Newsletter here

Read the second issue of the Dementia Carer Voices Newsletter here

Read the third issue of the Dementia Carer Voices Newsletter here

You can sign up to recieve future updates by clicking here. 

The project team have put together a short survey to enable them to capture key messages from carers which will be used to influence future policy.

If you have experience of caring for someone with dementia you can contribute and have your say on your hopes and concerns for the future by visiting http://www.surveymonkey.com/s/V7SYL2G 

For further information read the Dementia Carer Voices Information Report or contact Programme Director Irene Oldfather , Project Officer Tommy Whitelaw or Policy and Information Assistant Christopher Doyle.

Life can change so quickly .For the love of mum

Life can change so quickly.

It started just over five years ago. I was working really hard and was in a long term relationship, but both were falling apart. I was burnt out and really not playing my part in the relationship, blaming everyone for how I felt and my actions. I then received the letter from my then girlfriend that I have written about here before, fell out with my work and decided to take three months off. My only thoughts were to return to Scotland for a break and for my mum to put her arms around me and tell me everything was okay.

My mum and dad had always kept me in check and told me the truth, but supported me in the best of manner, but this time something was different. For the first time my mum needed me more than I needed her, it was her that needed a pair of loving arms around her. This was the beginning of the biggest change we would ever face. From that day forward a lack of understanding of the journey we had undertaken, on my part and from those who we dealt with, defined much of the next five years. All too often our lives were never far from a crisis point. I believe there is a lesson there, this lack of understanding and guidance left us hurling towards a struggle we would never get over or recover from and I suppose that is the basis of this campaign .Guidance, understanding, listening and being heard .

We can’t at this time cure dementia but we can cure so many of the things that have a massive impact on our lives .We can prepare families for the journey ahead and the changes that any long term illness or condition will undoubtedly bring as we do our best to care for a loved one.

I like all carers cared first and foremost for love and believe with the right support and advice at the right time and a listening ear if we can do much of the rest. The right support and understanding will ensure that our loved ones are treated with the respect and dignity they deserve and given the chance to live not fade. All of this does not cost money, just time in my case. I was a carer for one reason only for the love of mum, but love is not enough. We need to be given the support we need at the time we need and when it can make the biggest of difference.

For the love of mum

Speaking to Labour Party members Eastwood & Glasgow south July 10th

Hi

With thanks to Labour Party members. Eastwood and Glasgow south for inviting me along to speak at  a joint event on July 10th  I have been invited along to speak  about caring for my mum ,dementia ,the people I meet on my Tourane the letters I receive

With thanks to Peter chair of the Eastwood branch and Cllr Kerr  chair of Glasgow south for the invite to speak as a son and raise awareness

Tommy

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