Monday, 28 July 2014

Earlier Today visiting and speaking at the Cuppa Club the Albany Center, Glasgow #Wonderful





With great thanks to Colette Campbell for the kind invite to attend and speak at the Cuppa Club today 
Part of ENABLE Scotland’s new Cuppa Club project
I had the loveliest time meeting everyone with us all chatting , sharing experiences life stories and more
one of the words that keeps appearing in the letters I receive and was a big part of my own experience is loneliness .We should be funding ,supporting and encouraging clubs such as the Cuppa club a great way of bringing People  together

With Colette and some of the group 






   Do you know someone who is aged 65 years or over, living in Glasgow and caring for someone in their family who has a learning disability?
If so we think you might be interested to hear about ENABLE Scotland’s new Cuppa Club project.  Cuppa Club will bring family carers (aged 65+) of people with learning disabilities together every fortnight. There will be lots of interesting activities on offer along with the opportunity to chat, have lunch and get information about relevant issues.  This project has been funded by the VAF Transformation fund, allowing us to offer all activities free of charge.
The launch of Cuppa Club will take place on Tuesday February 11th at the Albany Centre, Glasgow from 12pm to 2pm.  There is no charge for this event, which will star showbiz legend Johnny Beattie MBE, ‘Malcolm’ of River City - the Glasgow born actor and comedian, whose career has spanned over six decades.
For more information please contact Colette Campbell by email at Colette.campbell@enable.org.uk or phone 01698 737186 or 07867179035.


Link for info:
Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Sunday, 20 July 2014

Dementia Carer Voices Project - How To Get Involved


                                                   


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


For further information, please contact the project team on 0141 404 0233, or email;

Director
irene.oldfather@alliance-scotland.org.uk

Project Engagement Lead 
tommy.whitelaw@alliance-scotland.org.uk

Policy and Information Assistant
sarah.mcdermott@alliance-scotland.org.uk

Administrator
laura.mccculloch@alliance-scotland.org.uk


Additional information about the project is available at:

http://www.alliance-scotland.org.uk/what-we-do/projects/dementia-carer-voices/

 

http://dementiacarervoices.wordpress.com/



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 >

Friday, 18 July 2014

Age Scotland / Health and Social Care ALLIANCE Scotland invite you to have your say on the National Care Standards



Age Scotland / Health and Social Care ALLIANCE Scotland invite you to have your say on the National Care Standards

Broomlands and Boutreehill Age Concern, Tuesday 19 August, 10am – 2pm

Social care is an integral part of many people’s lives.  The National Care Standards were created in 2002 by the Scottish Government to give those accessing care a definitive list of what they should expect. The twenty three original care standards were developed with the underlying principles of dignity, privacy, choice and safety in mind.
However, whilst the principles remain intact, the changes to the way that care services are planned, delivered and scrutinised means it is necessary for the Government to review the standards.
The Scottish Government is keen to hear from the people who use care services, either directly or via a family member. This summer is your chance to have a say in the new Care Standards that are being developed, to ensure they are robust enough to maintain the highest possible standards of care for all in Scotland.
Age Scotland and the Health and Social Care Alliance Scotland are working with the Government to host a series of ‘Have your Say’ events across the country. The consultations will focus on;
·         Whether there should be overarching human right based standards that apply to all health and social care settings
·         Whether there should be a reduction in the number of sets of standards we have, with core standards developed that apply to all service types
·         How the standards should be written and who should write them
·         How the National Care Standards should be used.
Lunch and refreshments will be provided and travel expenses by public transport will be covered. Everyone is welcome, but spaces are limited so booking is essential.  

To register, please contact Sairah Tariq on 0141 404 0231 or email event@alliance-scotland.org.uk

Guest Blog - Kim Pennock ,This is how I feel right now -For The Love Of Mum

Hi 

Today we have a guest on my blog from my friend Kim Pennock .Kim and I have become friends through our mums Stories friends for life I have to say we met as son a daughter as campaigners and for the love of our mums 

I feel very honored to share Kim's feelings  

You can follow Kim on twitter via  

This is how I feel right now........

Although I didn't have the happiest childhood for several reasons, my grandparents and my beautiful mum were always by my side to hug me encourage me and make me feel I could take on the world if I ever needed to...
My working life, eventually mainly from home, enabled me to marry, bring up four beautiful children and live a happy life surrounded by love and of course my lovely mum...
In 2006 my life took a dramatic turn when the love of my life suddenly and unexpectedly after 28 years,decided to leave me and our children as he no longer wanted to be a married man.. Heartbroken and devastated I turned to my mum who nurtured and guided me back from despair.. Mum didn't come round often or ring me or tell me what to do, she was just there and I knew it.. That's all I needed just to know she was there. Due to the strength I felt from the love given and instilled in me by mum I brushed myself down and faced the uncertain future with an inner strength I had to dig very deep to find.
One day mum sent me a card to tell me how proud she was of who I had become and how proud she was that I was always there for her, forever and always we used to say....
In 2010 my life took a second dramatic turn when my beloved mum was taken ill and has gradually at first then rapidly declined into the hidden depths of Vascular dementia and Alzheimer's...
I moved my family closer but due to no finances had to rent a house that fell through so I had to move yet again. I was in complete and utter turmoil but I have learnt how to fight a totally different fight without the beautiful mum I knew by my side.
This is a fight I will never win.. One I wish I could fight to the bitter end for my mum who needs me more than ever...A lonely fight regardless of the intermittent support I have from family and friends...A scary fight because there will be no winner... A desperate fight because it's in despair I repeat over and over again to those that could help please can you tell me what we need to do?
I am learning as we go but know I am losing the fight and my heart is broken all over again.... But this time I fear it will never mend as the woman I consider to be my everything will not be there to hold it close... Mum no longer knows who I am.. However a hug a smile a cuddle and a laugh over tea and cake is everything to me now...I pray I have longer with mum than I perhaps know I have..... Who will mend my broken heart when the light goes out on a lifetime of love and support laughter and kindness?

Kim Pennock




Social Attitudes in 21st Century Scotland event with Professor Curtice, Professor of Politics at the University of Strathclyde,





The Health and Social Care Academy and the University of the West of Scotland would like to invite you to a seminar with one of Scotland's leading political and polling experts, Professor John Curtice on social attitudes in 21st century Scotland.
Professor Curtice, Professor of Politics at the University of Strathclyde, will help delegates to explore the question ‘Is Scotland different?’ in the context of the referendum on Scotland’s constitutional future in September.  During the session he will consider current trends and social attitudes and how far Scotland may be thought to have a (distinctive) attitude to equality and inclusion - however it is governed in future.
 This event, held from 6 – 8pm on Thursday 31 July at the Lighthouse in Glasgow will build upon a rich set of insights outlined in Scotland, small country, big ideas, Imagining the Future from the Health and Social Care Alliance Scotland (the ALLIANCE) and many of our 600-plus members.
If you would like to attend , please email event@alliance-scotland.org.uk and I will register you.
Thanks for reading my blog, you can now watch my short films by searching 'My mums name was Joan' on this blog
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Thursday, 17 July 2014

CAN YOU HELP ? - Our Dementia Carer Voices Survey -


                                       


CAN YOU HELP ? - Dementia Carer Voices Survey  

http://www.surveymonkey.com/s/V7SYL2G

Dementia Carer Voices aims to provide a platform upon which carers can express their views. The project team have put together a short survey for carers to share their experiences of caring for a loved one living with dementia. 

Thank you for taking the time to share this information with us, your contribution will enable us to capture key messages which will be used to influence future policy.

HOW THIS SURVEY WILL BE USED 
The information we collect will primarily be used to inform our work priorities. We will not share any identifiable information with anyone out with our team but will report to the Scottish Government on the themes and the amalgamated information evidences. 

Thank you 

Tommy 

                                              

Tuesday, 15 July 2014

Thank you Wexham a great day a few tears passing over the River Clyde

Hi 

Well that's me nearly home I on the No9 bus after a wonderful day speaking Wexham Park Hospital Slough and attending the opening of the Sunflower Dementia Gardens

Coming home to Glasgow this wonderful City that is my home was always so very exciting in my previous life on tour, returning  home to see family and friends 

Today is mums Birthday and as the train passed over the river Clyde and pulled near to Central station I could not hold back the tears  

Sitting in the empty train carriage it took me a wee while to compose myself 

That's what coming home does it reminds you of growing up reminds you of family reminds you of the little things that are the make up of your life and loves 

But coming home tonight felt quite lonely and the family things are only memories now 
And home well the house Is quite lonely these days 

There was no one quite like Mum and really there is no place quite like home  

Thank you Wexham park for the great kindness today ,but even through the tears there is no place quite like home









Sunday, 13 July 2014

Birmingham Heartlands Hospital unveil plaque Naming reminiscence room in Memory of my mum.

A few months back I was contacted by  Dr Dawn Chaplin Head Nurse Patient Experience/Clinical Dean for Nursing  Heart of England NHS Foundation Trust and ward sister Helen Seymour to say they would like to name the new therapeutic reminiscence room in memory of my mum ‘The Joan Whitelaw room ‘ after a few tears I replied to say how honoured I feel as a son and thank you


The Joan Whitelaw Reminiscence Rooms 

In Memory of Joan Whitelaw, an Inspirational Mother
And in recognition of her Inspirational Son and Carer, Tommy Whitelaw

Caring for Carers:
To ListenTo UnderstandTo Support

Promoting Compassionate Care for all in Hospital





in fact a few tears are coming as I type this

I had the great privilege to speak at the hospitial  a few months back  for Sam Foster and Diane Eltringham in the lecture theatre and met the  great kind caring compassionate  team who work there


Dawn, Helen and the team  have been using our short films and got to know my mum and our story and have so kindly asked to remember mum is such a special way 

Thank you Dawn ,Helen, Sam, Diane and all the team at  Birmingham Heartlands Hospital you have brought a smile to a sons heart today I look forward to coming down later this year to speak at the conference and for the unveiling of the plaque by Helen and say thank you in person

Thank you for the great kindness thank you from a son and from my heart “the kindness of people “

Thank you Birmingham Heartlands Hospital, Heart of England NHS Foundation Trust



Tommy   






Thursday, 10 July 2014

Thank you Community Contacts - Inveraray


                                           

A big thank you to Becs ,Simon and all today at the Community Contacts event in Inveraray 
I had a wonderful day today 

Look out next week on our Dementia Carer Voices site for more about today and the pledges 

Traveling home now feeling inspired by the people   and surroundings 

Thank you for the kindness  

Tommy 










Hi 

With great thanks to Becs Barker, Community Project Manager, Community Contacts, Argyll and Bute ( Carr- Gomm for the kind invite to speak at the Community Contacts event Carr -Gomm are hosting at the Loch Fynne hotel Argylle and bite July 23rd 

I met Becs a few months back when I was a guest speaker at the Caring Connections event 

Looking forward to attending ,learning meeting new friends and speaking




You can get more info on community contacts below



Co-Production- What’s My Story?

Community Contacts works within Argyll communities. Our aim is to raise awareness of, and access to Self-Directed Support (SDS) - and that’s to a wide audience- individuals, families, friends, carers, community members and colleagues within care and support settings.
Our aim is to link people together on their SDS journey. Volunteers will becentral members of our team and these people will come from the communities we work within. Through knowing our communities; being aware of each other, neighbourhood facilities, community groups and wider connections our aim is to support people build natural connections and grow their own circle of support. ‘Real wealth’ is a key change embraced by the self-directed support movement- it means more than just money- self-directed support isn’t just about budgets, but how we access all the other aspects of life- our gifts, skills, relationships and how we fit into the world, how we contribute and how we are accepted. This tests our thinking and invites us to work in new and exciting ways together. Volunteers are invited to join us from all walks of life and mightinclude people with ‘lived experience-’ through sharing stories and developing peer support we work towards people having opportunity to share what works in life and how to be included.
Partners from independent, health, council and voluntary organisations are also members of our communities. Community Contacts strives to build links with people who represent these organisations- this helps us present a more accurate picture to the people we support on their SDS journey. It also means we can join networks to ensure that together we work to our strengths and support each other.
Embarking on an ‘SDS journey’ is a big thing. SDS brings about a cultural shift in how we think about, and, open up opportunities in how people might meet their individual needs and therefore their outcomes. If we consider this for ourselves for a moment we might start to realise how it might be for people- the opportunities it brings along with the anxieties present for some. Our aim is to give people all the time they need to explore their options; to offer person centred planning to allow people time and space to ‘play around’ with ideas. Our staff and volunteers are able to offer as much time as is needed to build rapport and to think about the opportunities and any restrictions that might be present. We don’t aim to take over from the work of the social work department, buthope to enhance it by working together with the added benefit of time and relationship building with a volunteer.
Our team offers information and support to explore all available possibilities. This might include finding out about ‘buying in’ a service from a support provider to thinking about purchasing equipment and resources. Equally we aim to work with people to make lives richer by accessing things that don’t cost money, or require little finance- like becoming part of the community. Some people may choose to continue having their support in a traditional way and this will also be supported and respected.

















Community Contacts provides independent support, advice and information about self-directed support with people in Argyll. Self-directed support is a new way people with social care needs can have more choice and control in how their support is organised and managed. It is a big step because it embraces our human rights and the desire for all people, including those with disabilities, to live full and included lives. Community Contacts is currently hosting their first Big Volunteer Welcome. We want our new volunteers to feel and be included and valued members of our team. We are working hard to build good rapport between each other and to learn together about the importance of good relationships- we think that if we can value each other in this way we will be better placed to do the same with the people we support. The Community Contacts Team is ready to offer a listening ear and to help in any way we can to support individuals, families, friends and communities to get the best out of Self-Directed Support




                                           



Wednesday, 9 July 2014

With great thanks to Bernie Hollywoood OBE for the kind invite to speak at the LLoyds Bank staff conference yesterday


With great thanks to Bernie Hollywoood OBE for the kind invite to speak at the LLoyds Bank staff conference yesterday 

LLoyds banks chosen charities this year are The Alzheimer Association and Alzheimer Scotland so I was very honoured to speak about caring for mum ,the letters I receive and our Dementia Carer Voices Project 

A BIG thanks to all for the opportunity kindness and for donating 500 pounds to the charities in my name 

I had the great privilege to meet Berine a couple months back when I was a guest speaker 
At Sunshine house wigan for Barbara Nettleson 

I have also admired and followed Bernie on twitter  and the amazing work he does for others for quite some time 

 
Below is a wee article from our meeting at Sunshine house and a link to find out more about Bernie and the amazing work to does to make a difference for so many peolpe 

Bernie Hollywood - Social Entrepreneur inspiring millions to make a difference to the lives of others less fortunate than themselves. http://www.berniehollywoodobe.com


Tuesday, 8 July 2014

My Mum was more than a wee woman with dementia with thanks to Dying matters and Heart of England NHS Trust


Mum was more than a "wee woman with dementia"

Tommy and his mum, JoanSeven years ago Tommy Whitelaw was travelling the world as head of global merchandising operations for some of the biggest names in the music industry, including U2, Elton John, Kylie Minogue and the Spice Girls. Then in 2007 a visit home to Glasgow to see his mum, Joan, changed his life forever. Joan was diagnosed with vascular dementia, and Tommy ended up moving into the spare room and becoming his mother's full-time carer until her death in 2012. 
Tommy has now dedicated himself to raising awareness of the issues and challenges faced by people with dementia and those who care for them. During this year's Dying Matters Awareness Week in May, Tommy gave a powerful and moving speech on the difficulties carers face and the isolation they too often feel at the Make a Difference Conference at Birmingham City football ground, which was jointly run by Dying Matters and the Heart of England Foundation Trust. He told the audience: "The loneliness started on the day of my mum's diagnosis. We were told someone would be in touch, but nobody was ever really in touch. And that set the theme and the standard for the next five years."
In a speech that left many members of the audience visibly moved, Tommy went on to say that his mother would quite often be described as "the wee woman with dementia". "But," he said, "That wee woman was Joan Whitelaw: a mother, a sister, a daughter."

Watch Tommy's speech

Tommy's Story, by NHS Media Hub 
Tommy and his mum's distressing experiences (once, in an act of desperation, he turned up at a health centre with Joan and pleaded for help, only to be sent away with an 0800 number scribbled on a post-it note) inspired him to start a blog, which has subsequently won several awards. He also launched Tommy on Tour, during which he travelled across Scotland, mostly by foot, to share experiences with other carers and to present their letters to MSPs at the Scottish Parliament. In 2012 the Scottish Government awarded Tommy two years funding to work on a new campaign, the 'Dementia Carer Voices' project, which provides a platform for carers to share their experiences of caring for a loved one with dementia, with a view to raising awareness among health and social care professionals and members of the public.
Following Tommy's speech, Dawn Chaplin, Head Nurse for Patient Experience and Clinical Dean for Nursing at the Heart of England NHS Foundation Trust, and Helen Mallard, matron of Ward 30 at Heartlands Hospital, informed the audience that they had dedicated the Reminiscence Room in Ward 30 to Joan Whitelaw, and unveiled a plaque in her memory. An emotional Tommy responded: "Not many people asked what my mum's name was and this is a lovely tribute to have her name up there."

More

Dying Matters: Information for carers

Saturday, 5 July 2014

Witnessing my breakdown - we must and can do better


Fear, loneliness, struggle and a breaking heart: the words that most describe how I felt inside every day when caring for my mum.

 

Looking back now with a clearer head, how could no one see this? I mean, I was a mess. We were falling apart; I was struggling to cope, struggling to care.

 

People surrounded me as a campaigner, people encouraged me to campaign, people supported me to campaign yet at home nothing changed.

 

I tried to speak loudly yet no one seemed to hear MY cry for help. The thing that is a constant in my mind is "What about Mum?”

We had fragmented support, fragmented understanding.

I hoped from the crowd someone might recognise the mess we were in. I hoped from that crowd someone might truly hear what I was saying.

Was I a good bedroom campaigner? I don't know. 

What I do know is I wanted to be a good son, a good carer and in amongst all the talking loudly and campaigning, this hope, this wish, suffered most.

 

Was I a good son and carer?

I truly don't believe I was, I just did not know how. I was lost; we were both lost.

 

My mum deserved better, better than I was able to give. 

So this heart that was breaking will never truly heal.

 

 

Tommy 

 

 



 










For Mum 15-07- 39 - 22-09-12


Today  is Mums Birthday ,and I miss my mum so very much

I miss mums Friendship ,Kindness ,Guidance and Love

#ForMum  




Daughter 



Sister




           

                                                                      Love Story





Wife 







Mother - Friend 









Joan Whitelaw reminiscence room heartlands hospital Birmingham Heartlands Hospital 
The Joan Whitelaw Reminiscence Rooms 

In Memory of Joan Whitelaw, an Inspirational Mother And in recognition of her Inspirational Son and Carer, Tommy Whitelaw Caring for Carers:

                                                        
                                                      



Dementia Carer Voices August Newsletter is now available

Make a Difference talks across Universities and Colleges – the class of 2017 As many people take their first steps into nursing and many...