Are you a carer?





Please watch my short film, which includes families and carers reading from the letters they sent me.






If you're a carer and you'd like to send a letter in, you can post it to Tommy on Tour, 39 crosslee street glasgow g521sl. You can also email it to tommy@i-woz-there.com

Wednesday, 23 July 2014

Today Speaking Community Contacts - Big volunteer Welcome Argyle and Bute


                                           

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




                                           



Tuesday, 22 July 2014

Speaking Dementia Champions Forum Burton Hospital Burton on Trent September 18th

Hi
With great thanks to Leanne Siekiera Student Nurse and Alison Haynes Lead nurse Dementia Burton Hospitals NHS Foundation Trust For the kind invite to attend and speak at the Dementia Champions Forum on the 18th September Burton Hospital Burton On Trent

Leanne is a friend on twitter and has been a great support to my campaign and work  you can read a blog post from Leanne on the @WeNurses community site  here

A BIG thank you Leanne and Allison for the kind invite and opportunity .I look  forward tomeeting  everone ,hearing more about the dementia champions and speaking about my wonderful mum and our make a difference tour 


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

Dementia the ForEver moments

I cared for my beautiful kind mum at home from 2007 till mum passed away September 2012. My heart, a heart that smiled so often whilst caring was broken long before mum passed away.

My mum could do that no matter what she faced. Facing much greater challenges than I was, she could always make my heart smile. That's what mums and dads do; they make it better for their children no matter what, no matter how young or old their children are.

Over the years, dementia kept changing everything. Just when we thought we had a routine, we had understanding, we had a way to make the best of each day, dementia would change everything.

Everything we thought we knew the day before had shifted. We would wake up and everything we knew before had changed. We had to rethink sometimes, re-smile, but most often struggle to get through the day. 

And it was always forever, the changes where always forever. I knew they were forever, I had witnessed forever happening so many times before.

From mum knowing who she was to not, to recognising her life, her home. All the little things we do for ourselves every day becoming the most impossible task, to not recognising or the remembering the man she met and fell in love with one day. The man who loved mum with all his heart. 

The cruellest trick of all, the love story of your life taken away.

And for me the big question is:

What are going to do to make forevers better for people living with dementia, for the families, for Carers?

It always felt like a surprise so often to people when forevers came along, when we contacted them when we needed more help, support, understanding, guidance, chance, opportunities, kindness, dignity, respect.

It was never a surprise to me, I witnessed forevers so often.

If we are truly going to support families, be there for the forevers, as forevers can truly break your heart.





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

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 >

Saturday, 19 July 2014

The kindness of people-most of whom I have never met, thank you


Dementia and caring brings many struggles and of course moments of joy, love and inspiration. My mum inspired me many times and amazingly at the most crucial moments when I was really struggling to cope and understand. That kind of sums it up, there is my wee mum facing all that dementia brought and over the last months nearing end of life, but always able to comfort her son and get him through it.

 As a campaigner I am trying to raise awareness, understanding and empower people to help prevent families reaching crisis situations. All too often on our journey we were lost, lonely and isolated but looking back my heart can sometime smile and this is thanks to the kindness of the special people we dealt with.

Like the District Nurse who put her arm around me one day when I was in tears and said “You’re doing ok Tom you’re doing ok.” I can’t tell you how much I needed someone to do that as I was scared of what was happening and scared of letting my mum down.

Or the Nurse ( speach & Language therapist ) who was involved in the last months of my mums life when she could no longer swallow and had been in hospital for a few days. On her returning home I was struggling to get my mum to eat or take fluids and the nurse said call me if you have any problems, so I did and she took the time to pass by after work to sit down to show me again what to do, holding mum’s hand and putting us both at ease.

There is an important lesson here, its people who change lives through their help, kindness and understanding and it is important to celebrate this so that others can take notice and follow.  A big part of my talks is celebrating the people who made our experience better, even if was just for a day. Then there are the amazing carers and families who I have met out and about or online on Twitter or Facebook who have shared their life stories and are the inspiration behind my campaign.

Over and above policies, strategies or reports it’s people who have the potential to transform people’s lives throughout what can be a very difficult and lonely journey. I still smile to think of the special people who helped me and the thousands out there helping others in the same manner, most of whom I have never met.

Tommy





Friday, 18 July 2014

Speaking University of the West of Scotland Ayr Nursing / Mental Health Students 2 talks September 19th





Hi 

with great thanks to Susan Holland Lecturer/Practitioner in Mental Health Nursing

University of the West of Scotland for the kind invite to speak to students on September 19th 

I met with Susan on my tour with  NHSaa and I am very Glad to say Janice Mcalister Dementia Nurse Consultant with be partnering me at the talks as part of our tour together 

The university Runs a module   “Care of Vulnerable”  and I have been asked to give two talks on September 19th 11am and 13:30pm to the students who attend

a big thank you to Susan and University of the West of Scotland  for the opportunity to meet and speak to the students and I look forward to continuing my tour with the great team from NHSaaa 

Tommy 



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

New Talks Added with NHSaaa August 11th and 15th lecture theatresCrosshouse - Ayr Hospitals


                                                   


I am very happy to say we have added two more talks in Partnership with the wonderful team from NHSaaa  .August 11th at Crosshouse Hospital and August 15th Ayr hospital 

We have just finished  a great 8 talk tour together over June and Jully speaking to over 400 staff across both hospitals and receiving 234 " Make a difference " pledges you can read more about the 8 previous talks HERE 

Really looking forward to the new talks, working again with the great team and meeting more staff from across NHSaaa 

A BIG thank you to Derek ,Janice and all the Team 


The 'You Can Make a Difference' > Campaign which was launched by Dementia Carer Voices in February of this year has now added new talks to the tour with NHS Ayrshire and Arran. >The campaign asks people to reflect on carer’s personal stories and experiences, and later make a pledge based on one key message or action that they will take away and apply to their everyday practice to make a difference.
The pledges > highlight the positive steps we can all take to make a difference for people affected by dementia through focusing on the person rather than the condition and taking time to listen to and focus on what is important to people with dementia and their carers.
                                                                                 Name
Tommy Whitelaw, Dementia Carer Voices Project Engagement Lead said
“This is an important opportunity to spread the message that we can all make a difference in our own way. Carers so often tell us that a little bit of time, listening and understanding can make an unimaginable difference during what can be a very difficult and lonely journey.”
Irene Oldfather, Director, the ALLIANCE, said
“By harnessing the power of carers’ lived experiences, the “You Can Make a Difference” campaign speaks to the hearts of people and communities across Scotland, with the simple message that dementia is everyone's business and that you have the power to transform the experiences of people affected by the condition.”
Name
These talks are open to all to attend. For further information, please email:
                                                   

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   






Friday, 11 July 2014

NHS Ayrshire and Arran Making A Difference The Tour The People The Pledges

Taken from our Dementia Carer Voices Site 

Dementia Carer Voices would like to say a huge thank you to NHS Ayrshire and Arran for their commitment to the Make A Difference Campaign. The whole team have reacted so strongly to the You Can Make a Difference message, and it’s been inspiring to get such a positive response. We are delighted to say that from these events, together we have collected a total of 236 pledges so far! We’d like to say a massive thank you to all those who have taken the time to listen, and to make a pledge – we really can make a difference.
photo 8
The tour would not have been possible without the help of Derek Barron, Fiona McQueen, Janice McAlister, Amanda Johnson and Lynne McLaughlin  from NHS Ayshire and Arran. They not only invited Tommy to share his experiences, but have shown their commitment to listening to the experiences of patients and carers, and supporting staff to make a difference. This support has been from every level within NHS Ayrshire and Arran, as Tommy was invited by the Chief Executive to lead off his ‘staff talks’ by giving a talk in a formal Board meeting, where they started off the process of making a pledge.  This enthusiasm has been reflected throughout the organisation, with Senior Charge Nurse Lynsey Renfrew  encouraging staff to attend and even taking a pledge tree for her ward so that all staff in Ward 5D can reflect on the difference that they can make to the lives of the people they work with.
Each pledge that we have collected represents a huge milestone not just for the campaign but for the people of Ayrshire and Arran. The team at NHS A&A have aligned the pledges to their 10 Key Action Points to showcase how both the pledges and the Action Points can be fulfilled, giving meaning and context to each other.
photo 10               photo 10
At the talks, the staff were encouraged to make a pledge and hang it on one of the pledge trees, which are now being displayed in dining rooms which are open to both staff and the public.
photo 9
NHS Ayrshire & Arran have an intranet site which is now going to display all of the pledges that have been made during the tour so that staff can view them.  In six months, these will be re-circulated and staff will be asked to review their pledges and say if they have met their pledge. This feedback will be gathered anonymously to promote honesty and open up a dialogue as to how staff can be supported to keep their pledges.
Tommy has spoken to 424 staff at 8 talks, ranging from nurses, allied health professionals, medics, students, administration and support staff, social work, fire and rescue and police colleagues. We are delighted to say that there are already more talks being planned for August, and look forward to continuing to work together.
Fiona McQueen’s ‘Viewpoint’ blog piece spoke of the NHSaaa experience has had over 5000 hits, with over 900 retweets on Twitter. The use of social media in particular has been a great tool for sharing information and creating an easy way for people to get involved and to speak to others who are keen to make a difference. From tweets to wordeo clips, the campaign has really been strengthened and accessible to staff and members of the public alike.
Thank you again to everyone involved - we really can make a difference.