Monday, 22 December 2014

Welcome to the December Dementia Carer Voices newsletter,

                                                                 DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Welcome to the latest edition of the Dementia Carer Voices Project's newsletter, which will keep you up to date with our latest activity.

This month features the 'You Can Make a Difference' film launch, new publications and events, along with some great guest contributions to our Dementia Carer Voices blog site, and news from our network.

The Dementia Carer Voices Team would like to wish each and every one of you a lovely festive season and all the very best of wishes for the new year. Thank you so much for your support throughout 2014, it has been an incredible year and we have met some amazing people and gathered so many inspiring pledges.

Thank you to each and every one of you for making this year so special and for making a difference.

 Read: Dementia Carer Voices December Newsletter

From Irene, Tommy, Laura and Sarah, Merry Christmas and a Happy New Year!

Thanks for reading my blog, You can now view my 8 short flims here!
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Sunday, 21 December 2014

Seasons Greetings and Support information over the Festive Period

The Dementia Carer Voices Team would like to wish each and every one of you a lovely festive season and all the very best of wishes for the new year. Thank you so much for your support throughout 2014, it has been an incredible year and we have met some amazing people and gathered so many inspiring pledges – thank you to each and every one of you for making this year so special and for making a difference.
 We also know that Christmas can be a difficult time, but no one has to be alone. If you need someone to talk to, or a bit more information, there are places which will be open over the festive season which we have included some information on below.
Thank you again for such an incredible year – we can’t wait to see what 2015 will bring! So from Tommy Irene, , Laura and Sarah, Merry Christmas and a Happy New Year.
new year

It’s ok to ask for help

Alzheimer Scotland Helpline

The 24 hour Dementia Helpline is a freephone Scottish service for people with dementia, carers, relatives, professionals, students and anyone concerned about dementia. It is open 24 hours a day, call them anytime on 0808 808 3000 or email them at


The Silver Line is a a free confidential helpline providing information, friendship and advice to older people, open 24 hours a day, every day of the year.

You can call them anytime on: 0800 4 70 80 90

The Samaritans

The Samaritans are open 24 hours a day, 365 days a year. You can call them on 08457 90 90 90, or email

Carers UK Adviceline

The Carers UK Adviceline is an expert telephone and email advice and support service. They will be open as usual until Tuesday 23 December 2014. You can call them on 0808 808 7777 or email them at
From 24 December 2014 to 2 January 2015 (except Bank Holidays) an information signposting service will be available. However, expert advisers will not be available.
During this time callers will be able to order a Carers Rights Guide and there will be a limited number of appointments available for urgent cases to be contacted on Monday 5 January 2015.
Opening hours are as follows:
  • Wednesday 24 December: 10-4
  • Thursday 25 December: Closed
  • Friday 26 December: Closed
  • Saturday 27 December: Closed
  • Sunday 28 December: Closed
  • Monday 29 December: 10-4
  • Tuesday 30 December: 10-4
  • Wednesday 31 December: 10-4
  • Thursday 1 January: Closed
  • Friday 2 January: 10-4
  • Saturday 3 January: Closed
  • Sunday 4 January: Closed
From Monday 5 January 2014 the Adviceline will be open Monday to Friday, 10am – 4pm as usual.

Carers UK Forum

The Carers UK online forum is available to Carers UK members 24 hours a day, 365 days a year. If you’re not a member you can join online for free and your user name and password will be automatically emailed to you. To get started join Carers UK as a member – you can make a donation when you join or sign up as a free member.

Social services

If your normal office is closed and you need urgent help, then you need to find the “emergency duty team”. Numbers are sometimes printed in local newspapers or in the telephone book. An easy way is search online is to use google and type “emergency duty team” and the name of your local council.
In Scotland you can contact Care Information Scotland who can provide information and contacts for social care services at 08456 001 001 (Mon-Sun 8am-10pm).
In Northern Ireland Emergency social work contacts can be found by going to and finding your own Trust website.

Medical help

If you have a medical emergency, a critical or life threatening problem call 999. Examples of an emergency include unconsciousness, difficulty in breathing, suspected heart attack or stroke, heavy blood loss, serious injury or severe burns.
If your health problem is less serious you can call the NHS on 111, free from any phone.
Find out more:
Scotland – NHS 24
NHS 24 is a 24 hour telephone health advice and information service for people in Scotland.
T: 111
Online health information is also available at NHS Inform.
Wales – NHS Direct Wales
NHS Direct Wales (Galw Iechyd Cymru) is the NHS Direct service for people in Wales. It provides information in English and Welsh.
T: 0845 46 47
Northern Ireland
There is no equivalent service in Northern Ireland. You should ring your own doctors surgery, where you will find a message with contact details for the out of hours service to call. This website contains useful information about Health and Social care:
Thanks for reading my blog, You can now view my 8 short flims here!
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Saturday, 20 December 2014

Today attending launch MakeaDifferenceNHSaaa film UniversityHospital Ayr

I am truly honored to be attending the launch of Make A Diference  NHSAAA on Friday December 12th at the lecture theatre University hospital Ayr 09:30am A FILM  made in partnership with NHS Ayrshire and Arran and the University of the West of Scotland Dementia Carer Voices and ALLIANCE Scotland 
I am also proud to be able to  share a preview of the upcoming Film,The documentary was filmed during ,over and after my 13 talks across Ayrshire along with our vist and cross party support at the Scottish parliament 
The film will hear from and  follow staff as they speak about and make their pledges and will see how they progress in fulfilling them. This will give a real insight into the ways in which people can make a difference in their daily lives, and crucially gives the opportunity for people to give honest feedback in real time about any potential barriers that make it harder for them to fulfil their pledge. NHS Ayrshire and Arran are committed to supporting staff on their ‘make a difference’ journey, along with pledges from First Minister Nicola Sturgeon and NHS Scotland CEO Paul Gray   
I would personally like like to say a huge thank you  from the bottom of my heart  to the all the team for their continued passion ,kindness guidance & support, particularly Derek Barron, Fiona McQueen, Janice McAlister, Amanda Johnson and Lynne McLaughlin. 
I am so glad to have met you all ,this campaign is called you can make a difference and you have helped make a difference in my life thank you 
  The team at NHSaaa will now work with staff to help to make sure that people are given the best opportunity to fulfill their pledges and give the best support and care, and to make a difference in the lives of people with dementia, their families and carers.
You can click on the image Below to preview the  trailer for a longer film which will be launched on 12th December in NHS Ayrshire and Arran University Hospital Ayr lecture theatre.
make a difference film

Wednesday, 17 December 2014

honored referenced Dr Elizabeth Ireland editorial Royal collegephysicians - 'Care of the dying a paradigm of true healthcare


Very honored to be referenced Dr Elizabeth Ireland GP- Kintyre Medical Group Chair- NSS Health Board editorial Royal college physicians Edinburgh  December article 

'Care of the dying a paradigm of true healthcare '  

had the great honor to speak with Elizabeth at an event back in September, the quote is from that event 

Thank you for the kindness 


Thank you to all across Norfolk and Suffolk NHS trusts


 A massive thank you from my heart and from all the team at Dementia Carer Voices for the wonderful opportunity to speak at 5 hospitals across Norfolk and Suffolk this week.
We met so many kind, caring people and witnessed some great initiatives over the mini tour.
I have been overwhelmed by the amazing responses on twitter and personal e-mails from people sharing their own experiences.
A massive THANK YOU to Willie Cruikshank from Norfolk and Suffolk Dementia Alliance for putting the tour together and for looking after me in such a kind way.
We met so many amazing people and many more pledges (around 100) were made along the way at each of the hospitals who have promised to work on the pledges made at each talk.
A few thanks and photos below of the tour and a BIG thank you to all who took time to attend.
I travelled home with a smile in my heart a wonderful end to our Make a Difference Tour 2014
Thank you
Norfolk and Suffolk dementia alliance - Willie Cruikshank
Queen Elizabeth Kings Lynn – Alison Webb
James Paget University Hospital – Christine Allen ,Julia Hunt ,Rebeca Ballard  
Norfolk & Norwich University Hospital – Martin Patel ,Elizabeth Yaxley  
Ipswich Hospital – Nick Hulme .Julie Sadler ,Sarah Higson
West Suffolk Julie- Fountain ,Maggie, Woodhouse   

Tommy and Team Dementia Carer Voices :)

IMG_0563 IMG_0564

Thanks for reading my blog, You can now view my 8 short flims here!
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Friday, 12 December 2014

Make A Difference Documentary with viewpoint from Derek Barron NHSAAA


The Dementia Carer Voices team are delighted to share this viewpoint on the Make a Difference film from Derek Barron  Associate Nurse Director at NHS Ayrshire and Arran. Derek and the team at NHS Ayrhisre and Arran have worked closely with the project, especially Tommy Whitelaw, our Project Engagement Lead, and have shown their continued commitment throughout the Make a Difference campaign. Thank you to Derek for sharing his insights and to all of the staff at NHS Ayrshire and Arran for their support.
Like many of you reading this blog I had watched, on Twitter, this guy (@tommyntour) for a wee while.  I was impressed with his enthusiasm, his commitment to his mum and his utter dedication to sharing the message ‘we need to change’.  I followed him on Twitter (and he followed me back – my first famous follower, except Nicola Sturgeon of course, she’s quite famous too!), that’s always a good start if you want to share, to engage, to listen. Little did I know of what was to follow.We talked on Twitter, I watched his short films, I was engaged with his tour – the message was simple, there are lots of people out there who are lost, lonely and confused, and within statutory services we weren’t hearing to their voices.  I’m not sure that we (in services) deliberately didn’t listen, it was just the voices were often quiet voices, we didn’t hear the message behind the quiet voice – after all, we had systems and processes, as well as protocols to be followed.
Tommy was challenging the system, he asked difficult questions about the processes not by shouting and protest, but simply by sharing real stories, stories about his mum, Joan, real stories about the thousands of people who shared their love stories with him, personal stories of how he struggled with each ‘forever change’.  All that he asked was for us to reflect on how our daily interactions impacted on people living with dementia and their carers – were they really at the centre of what we were doing?
It was therefore easy to say yes when the opportunity to invite Tommy to Ayrshire arose.  I was going to meet someone I’d admired, someone I’d listened to, that I’d shared ideas with.  His tenacity, his belief that the campaign could make things better for others is wonderful to see, indeed to hear.
We, in NHS Ayrshire & Arran embarked on our own #makeadifference campaign with Tommy.  My #pledge – “I will do what I can to support the campaign in Ayrshire & Arran”, and fortunately in my role I am able to exert a little leadership influence.
And so to our story, and the bits not captured in our film (released today) CLICK HERE .  I love working with enthusiastic, motivated people and we’ve got lots of them in Ayrshire.  However three in particular stand out regarding the Ayrshire leg of Tommy’s tour – Senior Charge Nurse Lynn McLaughlin, Clinical Improvement Advisor Amanda Johnston (now with the a Scottish Govt) and our Alzheimer Scotland Dementia Nurse Consultant Janice McAlister.  The three musketeers were assisted greatly by Wendy Rae (Medical Photography Dept) who hand cut every leaf.
Nicola Film Still 2
We have been working with Tommy and the Health and Social Care Alliance Scotland (@alliancescot) to promote the voice of carers in Dementia Care in our District General Hospitals, our community teams/services and throughout our organisation.
Tommy has given a ‘talk’ to the NHS Board (31.03.14) and eight open talks to staff, venues Ayr & Crosshouse Hospitals, during June and July.  A further two talks had to be organised in August 2014 because of the number of staff asking for more sessions.
We have collected pledges from each of these talks and added them to our ‘Pledge Trees’.
All pledges are anonymous, it is the responsibility of each individual to own their own pledge and accompanying action, it not the organisation asking it’s Tommy, it’s personal.  It’s a personal ownership approach rather than corporate ‘expectation’.
530 staff have attended 10 sessions (throughout June, July and August).  Nurses, allied health professionals, management, administration and support staff, social work, Fire & Rescue and Police – over 270 staff have made and recorded pledges.
Tommy and Janice then took the ‘talks’ out to local authorities and to student nurses at University of the West of Scotland.
This film included in this blog is our story. In January we will take the next step and go back out to our staff asking them (again anonymously) what they have done with their pledge, have they fulfilled it, if not what has been the barrier, what can we (the organisation) do to support them delivering on their pledge.
I hope you enjoy the film, please let us know on Twitter and on the blog itself – we’d love to hear from you.
Tommy – it’s been my privilege to know you, to be able to call you a friend. It’s a delight to be able to share in this journey with you.
Best wishes
You can follow Derek on twitter @dtbarron and of course the Dementia Carer Voices team @DementiaCarerVo #makeadifference

Dementia Carer RGB landscape (3)Alliance-logo-(L)-web

Wednesday, 10 December 2014

Guest post update via my friend kim Pennock - wool, knit teddies and hugs

Hi Tommy

I have had my eyes opened so very wide this last year. More so than normal due to the ever increasing despair of many who are falling by the way side on the path we now know as the Dementia path.

Some days I have literally screamed at the walls "why isn't something being done" "why aren't more people helping others" "what more can I do"

Some days All I want to do Is to run away and hide as I can't cope with the emotional roller coaster it drags from within the depths of my very heart and soul.

So I came up with an idea to focus on .....collect wool, knit teddies and pass them along to those in care or at home with a diagnosis of Dementia but who have no family to turn too for that often wanted hug.
The support this year, and it's just recently,  has been phenomenal as Malton Knit n Natter group of wonderful ladies stepped in to help me do just that and wonderful people sent me wool from as far as Aberdeen!

Our first batch of teddies are ready to be sent to those in need of a hug whenever they want one;-) So for next year I feel a need to develop this further and try my best, with the help of others, to bring a smile to the people so many seem to forget.

Thanks for reading my blog, You can now view my 8 short flims here!
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Tuesday, 9 December 2014

Triangle Of Care Dementia - Guest blog Karen Martin Carers TrustScotland

TOC_logo Photo2
 A BIG thank you to Karen Martin for this months guest blog on here and our Dementia Carer Voices site 

The launch of the guide, The Triangle of Care, Carers Included: A Guide to Best Practice in Mental Health Care in Scotland, in late 2013, was the culmination of a number of years of research into the information and support that mental health carers need from service providers.

The guide is a valuable tool for:
  • bringing together all mental health service providers
  • sharing best practice and building on current practice
  • self-assessing existing service provision
  • offering support and encouragement to mental health providers to deliver best practice consistently.
Already well received in England, the guide had further validation when it was included in the UK Government’s strategies for mental health and carer service provision and social inclusion. In Scotland validation came from the inclusion of Triangle of Care as a good practice document by Mental Welfare Commission for Scotland, and endorsed by Scottish Recovery Network as a tool to help services evidence carer involvement within recovery. Similarly it has now been endorsed by Scottish Government Working Group for Commitment 2 of Mental Health Strategy.

What does The Triangle of Care mean for carers?
The Triangle of Care brings together many years of research with carers into what they feel will benefit them when involved with mental health services. It is based on six principles that mental health services can use to include and support carers. It explores what each principle means in practice and provides good practice examples.

The six key principles:
1 Carers and the essential role they play are identified at first contact or as soon as possible thereafter.
2 Staff are carer aware and trained in carer engagement strategies.
3 Policy and practice protocols re confidentiality and sharing information are in place.
4 Defined post(s) responsible for carers are in place.
5 A carer introduction to the service and staff is available, with a relevant range of information across the care pathway.
6 A range of carer support services is available along with a self-assessment tool.
Carers are often the only constant in the service user’s mental health care journey.

What does The Triangle of Care mean for dementia carers and services?
Carers Trust Scotland is pleased to announce that Triangle of Care has been adapted to make it suitable for use within dementia settings here in Scotland.  This was possible due to partnership working with Royal College of Nursing in Scotland, carers of people with dementia, local and national organisations, such as Dementia Carers Voices and University of Stirling Dementia Research Department.
The Triangle of Care, Carers Included: A Guide to Best Practice in Dementia Care in Scotland has the same six standards, but highlights to services how it can be used, as one of many tools, to improve carer involvement in line with Scotland’s Dementia Strategy.  The Triangle of Care for dementia also demonstrates how it can ensure the Charter of Rights for People with Dementia and their Carers can be upheld and promoted.
The new Scottish Triangle of Care, Carers Included: A Guide to Best Practice in Dementia Care in Scotland is due to be published on line in early January 2015 and Carers Trust Scotland, in partnership with Dementia Carers Voices, hope to start promoting its use within dementia settings.  Currently NHS Greater Glasgow and Clyde are looking at introducing Triangle of Care within some of its older people areas, in particular within Renfrewshire CHP.  We will keep people updated on progress of this, and other Triangle of Care initiatives.
For further information, or to be kept updated on progress of Triangle of Care, please contact Karen Martin, Mental Health Development Coordinator, Carers Trust Scotland, Email, or call 0300 123 2008.
Carers Trust Scotland, Skypark 3, Suite 1-2, 14-18 Elliot Pl, Glasgow, G3 8EP.    
Tel: 0300 123 2008         email:                       web:
Facebook:                                       Twitter: @CarersTrustScot

My mums name was Joan ,my Mum Had Dementia - our Story 9 Short Films

Tommy’s speech, providing a carer’s perspective,  on the theme of “ No – one ever asked   ” highlighted the transformational impact that ...