Read the Dementia Carer Voices Project’s August newsletter, Here

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’s highlights include Dementia Carer Voices partners with the Chief Nursing Officer Directorate, What does Brexit mean for people with dementia and their cares? and  Driving and Dementia by James McKillop.

Read: Dementia Carer Voices May/June Newsletter

                             

                            

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

Dementia Scotland 2016 A Human Rights Based Approach to Care, 14 September Earth, Edinburgh

Dementia Scotland 2016

A Human Rights Based Approach to Care, 14 September 2016 - Dynamic Earth, Edinburgh
A limited number of funded (no charge) places are currently available for the Dementia Scotland 2016 Conference these places are being offered exclusively to members of the Health and Social Care Alliance Scotland. If you would like to attend please email rob.daniels@govconnect.org.uk to secure your space.
A link to the conference website can be found here.

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

Lived experience and neurological conditions: A personal challenge

                                              

Our latest post comes from Paula Aldin-Scott of the ALLIANCE's Neurological Programme on her personal motivation and supporting the voice of lived experience to improve neurological services across Scotland.

 

I moved into the not for profit sector in 1999, after 17 years in other sectors. I found the third sector allowed me to share and enjoy hope, empowerment, fairness, respect, and equality in the work I do and support.

My previous role was with the National Neurological Advisory Group (NNAG) whose purpose was to support and monitor the implementation of the Clinical Standards for Neurological Health Services which aimed to improve the journey from referral into services and ensure everyone who accessed a service experiences a quality of care that gives confidence.  Hearing the voice of lived experience was a vital element to this work, through the Neurological Voices Programme which sought to connect and empower people to get involved in improving local services.

There have been many successes in the delivery of improvement, as we championed the development of co-produced care plans for those living with neurological conditions and gave those committed to improving neurological services a forum to share learning and good practice.  One of the Neurological Voices’ success stories was the lowering of a pavement outside a NHS Greater Glasgow and Clyde Neurology Department which improved accessibility.

The challenges to creating a working environment that delivers on improvement come, ironically, from change. Changes in government, new legislation and policy, budgets, culture, demographics, roles and relationships. The most significant change to me being the enactment of the Public Bodies (Joint Working) (Scotland) Act 2014 and the advent of health and social care integration. This has shifted the landscape of health and social care in Scotland to which the neurological community, including individuals, organisations and health and social care providers, will have to adapt. 

Jamie Hepburn MSP, Scotland’s Minister for Health Improvement until May’s Scottish Parliament election, said in March: “The recently published A National Clinical Strategy for Scotland makes it clear that we want everyone, including people with neurological conditions, to receive care in their own homes or as close to home as possible.” 

I’m proud to say that the Neurological Programme, recently launched at the ALLIANCE, has these values at its core:

·         Co-production

·         A seamless health and social care service

·         Learning from the voice of experience

·         Collaborative working

The programme will strive to have the voice of lived experience heard and acted upon. 

Linking in with the Chief Medical Officer’s First Annual Report, Realistic Medicine, Dr Catherine Calderwood states that: “Shared decision-making is core to the safety, effectiveness and person-centeredness of care and therefore resonates with Scotland’s Healthcare Quality ambition. The person centred portfolio in Scottish Government is driving and supporting policies and quality improvements that help reshape health and care through the lens of people using services.”

As a reflection of this our Stakeholder Event on 28^th July and Involvement Network event on 18^th August seek to engage with organisations and individuals with interests across a wide range of sectors such as acute care, rare diseases, palliative care, advocacy and social care. 

My personal challenge as we move forward is to adapt my knowledge and experience from previous roles to support and empower this voice. I am grateful that what I have previously learned is not lost but is going to be built on in the future, and that people who live with neurological conditions will continue to be able to bring their knowledge and expertise to bear.  

Paula Aldin-Scott

The ALLIANCE’s Neurological Programme

E: paula.aldin-scott@alliance-scotland.org.uk

T: @ANP_Scotland

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

Make a Difference - Lanarkshire Care Homes August 30th -

Hi 
With great thanks to Lynn Flannigan @lynnflannigan1 Lanarkshire Care Home Liaison Physiotherapist Law House for the kind invite and for arraigning a event on August 30th at Udston Hospital Hamilton from 09:3- 11:30 am 
 Places are free and can be booked via e mail VIA  Marion.Reid@Lanarkshire.Scot.nhs.uk

With great thanks to Lynn and all the team for this kind opportunity to take part  

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

celebrating 5th Anniversary of campaigning and Friendships

                              

June 6th will be 5 years to the day since I began walking around Scotland’s towns and cities to collect the life and love stories of people across Scotland who care for a loved one with dementia. This will also be the 5th year of my friendship with my now Director and mentor Irene Oldfather. 

At the time of my walk, I was a full-time carer for my beautiful, kind, and caring mum- Joan, who had Vascular Dementia. My kind mum passed away in September 2012. 

I felt passionately that no one should have to face the confusion, loneliness, and isolation that we felt. On 6th June 2011 I began my tour, collecting hundreds of life story letters, detailing the experiences of individuals caring for a loved one living with dementia.

You can view the video about the walk below which was later shown at the Scottish Parliament. It includes families and carers reading from the letters they sent during my dementia awareness tour of Scotland’s towns and cities.

An issue that struck me during my journey caring for my mum was the lack of awareness and understanding of dementia, and the way in which we perceive this illness as a wider society.  My door was always open but no one walked through it, people didn’t come to visit us anymore, and I truly believe that was down to the stigma surrounding the illness.

Everyone affected by dementia has a unique story to tell, and by sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.

Since then, I have met with thousands of carers, health and social care professionals, and students through my original ‘Tommy on Tour’ blog and now as Project Engagement Lead with the Dementia Carer Voices Project at the Health and Social Care Alliance. Trying my best every day, working alongside my friend, Director, and mentor Irene Oldfather, my friends & team mates Laura and Ashleigh, and colleagues at the ALLIANCE in taking the life and love stories of carers who have written to us, carers we have met in person, spoken to on the phone, heard from through email or through our online survey and shared these with health and social care professionals, students, MSPs and members of the public to raise awareness of the impact of dementia on families and the importance of empowering carers in carrying out their difficult but vital role. You can view 10 films documenting this story at the link here

Our work continues,You can read more about the work we do below 

                   

I feel so Honured  to have met so many inspiring people along the way in fact I meet incredible people every day dedicated to making a difference for others 

There are so many people to thank for all the support over the years ,Irene Oldfather,Ian Welsh OBE my team mates present Laura and Ashlegh and Past Chris and Sarah my wider Colleagues at the ALLIANCE amazing people who have shared their stories with and the incredible families,Carers and health and social care professionals  I have been so lucky to meet in person 

Thank you for all that you do. Thank you for the amazing kindness and support over the last 5 years  

I would also like to thank First Minister Nicola Sturgeon for Holding My Mums Hand In the last months of my mums life and for encouraging me to take our voices across the country    

Together we can make a difference.

Tommy 

Make a Difference campaign update 

We have engaged with over 50 ,000 people in person over the last 2 years, collecting over 10,000 personal pledges from health and social care professionals and we’d like to share some of their inspiring words, and help celebrate the work they do to make a difference to the people they care for.

You can read every pledge here athttps://dementiacarervoices.wordpress.com/pledges/

Read our case studies of how hospitals, universities and care homes are putting people at the heart of their work at: https://dementiacarervoices.wordpress.com/case-studies/

Listen to Director Irene Oldfather and Project Engagement Lead Tommy Whitelaw update the Community Chanel about the pledges and the You Can Make a Difference campaign: http://www.communitychannel.org/video/6BvGx7iqymw/do_something_brilliant_series_2_episode_6/

Living With Dementia 4 Powerful Personal Poems from Chris Roberts

We would like to take this opportunity to thank you all for your strong support this week in sharing the incredible poems from Chris Roberts

thank you Chris for sharing such powerful words with us it has been and continues to be a real privilege to display them here.

We hope that you have been as inspired as we have been this week – if you would like to share how these poems made you feel, how they relate to your experiences or if you have any poems of your own you would like to share with us to have published on our blog, please do get in touch.

We will leave you with the inspiring powerful poems written by the wonderful Chris Roberts. To keep up to date with Chris’s latest activity, follow him on twitter @Mason4233

Night times ; Awake with Alzheimer’s

Wide awake at five past three
What on earth awakened me
Why can’t I sleep, why can’t I dream
This is my life now,…..it would seem

Days rolling into, the darkest night
Surely this,….can’t be right
The endless nights and days,That never end
The bad dreams, that the dark dous’t send

Wandering around the house at night
Trying to find that wayward light
The handles rattle, the handles turn
What is outside you have to learn

My feet are cold,they freeze like ice
Someone shouts ! That can’t be nice
I was only lost, without the light
I didn’t need such a fright !

I just want to sleep and dream no more
Just let me through, sleep’s dark door
The door I look for every night
The Door that’s always just out of sight

Then I’m back in bed
You’re stroking my head
The woman from my dream
My darling wife It would seem !

Looking out of the window in a care home

I look out of the window, staring at the sky.

Just longing and wishing that I could fly

All the noise has gone and at last I can flee,

Leaving all my troubles, right behind me.

My eyes grow bigger, my mouth opens wide,

Into the white, beautiful clouds, I at last collide,

Spinning, turning, and flying carefree

I’m all on my own, just grinning with glee.

Then I fall and fall, screaming so loud

No longer feeling, so tall and proud

Just staring out of the window, looking at the sky,

And again Just Wishing, that I could fly,

And again, I cry !

 “Don’t you look well they cry”

Don’t you look well, they cry !

Don’t you look great !

Well ! If you’d like to be me, let’s make a date !

I’ll give you one hour, and then you’ll see

The darkness that tries, to devour me

You’ll see what drowns, the person you knew,

And the bright hours I have left are only few

Now, the darkness surrounds me and threatens my past,

How long, can days such as these last !

Tears fall all around me, they flood my feelings, they soak my face,

Yesterday’s memories packed away in my case.

I scream quietly, my eyes they retreat .

Trying to remember yesterday is quite a feat !

But with a smile on my face,

I cover, my disgrace.

Tomorrow is another day 

 My memories waver on the edge of reason”

  Trying to be normal is no longer easy

A reprieve would be nice for just one day,

But As I wait, it never happens that way

Younger and younger my brain starts to grow

My emotions jumping, too and fro,

My limbs they tremble when I try to walk,

My voice it waivers when I talk.

All the inner pain no one can see,

Stops myself, being me.

Please understand, what you can’t see

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

Two talks Post-Graduate Medical Center, County Hospital Stafford September 5th Register HERE

HI

With great thanks to Angela Marston @marstonangela and at the Katherine House Hospice for the kind invite to give two talks at the   Post-Graduate Medical Center, County Hospital ~ Rob Thomas Lecture Theater on September 5th

The talks are free to attend- you can register by contacting Vanessa at Places are limited to 70 per session.  To book am or pm session please contact Vanessa Edensor ~ 01785 254645 or email: VEdensor@khhospice.org.uk

A big thank you to Angela and all at Katherine House Hospice for this kind opportunity

                                 FREE DEMENTIA STUDY DAY 
                                    ‘Making a Difference’
                                5th SEPTEMBER 2016
           Post-Graduate Medical Centre, County Hospital ~ Rob Thomas Lecture Theatre 


AM SESSION
9.00-9.30am                                       WELCOME & ADDRESS
           CAROLINE BAKER (DIRECTOR OF DEMENTIA CARE, BARCHESTER HEALTHCARE)

9.30-10.30am     TOMMY WHITELAW ~ Project Engagement Dementia Carer Voices

10-30-11.00am COFFEE ~ Browse the Market Place

11.00-11.40am ST GILE’S SESSION ~ Theresa Barker

11.40-12.30pm DOUGLAS MACMILLAN SESSION ~ Pam Swift

12.30pm-1.00pm
PROFESSOR WILF McSHERRY ~DIGNITY IN CARE (Staffs University)
1.00pm FINISH







PM SESSION

1.00-1.30pm                              INTRODUCTION/WELCOME
     
1.30-2.30pm       TOMMY WHITELAW ~ Project Engagement Dementia Carer Voices

2.30-3.00pm                              COFFEE ~ Browse the Market Place

3.00-3.40pm                              ST GILE’S SESSION ~ Theresa Barker

3.40-4.30pm                  DOUGLAS MACMILLAN SESSION ~ Pam Swift

4.30-5.00pm    PROFESSOR WILF McSHERRY ~ DIGNITY IN CARE (Staffs University)
5.00pm                                      FINISH

PARKING:  Pay and Display at the Hospital.  No parking available at Hospice.

Places are limited to 70 per session.  To book am or pm session please contact Vanessa Edensor ~ 01785 254645 or email: VEdensor@khhospice.org.uk

Mini Tour Care Homes Ayrshire August - Arran- Irvine - Ayr - Girvan- Maybole- Beith

Mini Tour Care Homes Ayrshire August - Arran - Ayr - Girvan- Maybole- Beith - Ayr

I’m very excited to be going on a Mini Tour of Ayrshire. In fact, our Make a Difference Campaign started in Ayrshire with Derek Barron and Janice Mcalister at Ayr and Crosshouse Hospital, and the launch of the first Pledge trees along with Kerry Rennie and Tony Fisher for North Ayrshire Council, where we launched a pledge wall at Anam Cara. 

• We start off on August 2nd, myself and  ALLIANCE director Irene Oldfather with be traveling to and around Arran for 3 talks with Kerry Rennie and North Ayrshire dementia services meeting families, carers, and health and social care professionals.

• On August the 9th I will be volunteering for the day with the wonderful Food Trainacross Irvine and North Ayrshire. 

• My next stop along the way will be at Dalmellington Care Centre Ayr on the 10th and then on to Fairknowe care home Maybole on the 12th

• The next stop along the way will be Thistleknowe Care Home in Bieth on the 17th

• On the 23rd I will be attending and joining a steering group to look at supporting dementia friendly Girvan Hospital 

• On the 24th myself and our Policy and Information intern Ashleigh will be visiting our great friends at South Ayrshire carer center for a catch up and  to collect some ‘ What Matters to You ‘ podcasts and case studies 

• The final two talks will be to nursing students at the University west of Scotland Ayr campus Hamilton Campus September 14^th 1pm – 3 pm Ayr campus September 16^th 10 – 12 am the 1 pm till 3pm. We’d thank Fiona Miller, senior lecture, for inviting us back to deliver our campaign. We really appreciate our ongoing relationship with UWS and meeting new cohorts of student nurses. 
  
  

I’m very much looking forward to a wonderful mini tour with great friends from across Ayrshire Mini Tour Care Homes Ayrshire August – Arran – Ayr – Girvan- Maybole- Beith – Ayr

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