Join us for the Launch of the Pollok Pledge November 28th 10:30am

Dementia Carer Voices, Humza Yousaf MSP, Minister for Transport and Islands, and Glasgow Clyde College are teaming up to ask Pollok constituents to make a difference within their community.

Dementia Carer Voices, a project managed by the Health and Social Care Alliance (the ALLIANCE), has undertaken awareness raising activities, collecting 11,000 pledges as part of their You Can Make A Difference campaign which has engaged with 52,000 people over the course of 480 talks. The campaign has been taken across the UK to highlight that no matter what their role, everyone has the potential to transform the lives and experiences of people with dementia and their carers.

Dementia Carer Voices’ Project Engagement Lead Tommy Whitelaw is a life-long constituent of Pollok, where he was born and later returned to care for his late mum Joan, who had vascular dementia. From his caring experience he has since embarked on an awareness raising campaign, joining the ALLIANCE in order to tackle the loneliness and isolation that carers face through the You Can Make A Difference campaign.

Now, in partnership with Humza Yousaf MSP, and Glasgow Clyde College, Dementia Carer Voices would like to extend this invitation to make a pledge to the whole community of Pollok, to pledge not just to people living with dementia and their carers, but to their neighbours and wider community.

The launch of the community wide pledge is on Monday 28^th November from 10am – 12pm at Glasgow Clyde College Cardonald campus in the lecture theatre on the first floor, with tea and coffee in room 1.15. This will give constituents the chance to reach out to their neighbours and help reduce isolation and loneliness.

Agenda: Chaired by Irene Oldfather, Director at The ALLIANCE

• Arrive – 10am – Tea and coffee in room 1.15 on the first floor
• Lecture theatre – on the first floor
  • View the pledge designs from the students
• Speakers – 10:30 – 11:30am
  • Welcome from the College Principle
  • Introductions to the day Irene Oldfather
  • The College –  Marie – short film on the work they do and pledges
  • Humza Yousaf MSP
  • Tommy Whitelaw
  • Andy, Development Officer for Pollok United Soccer Academy SCIO
  • Cameron from ALISS. A local Information system that signposts to local resources and Gerry from the Link Worker Programme
• Q&A – 11:30 – 11.50am
• Close, Irene Oldfather– 11.50 – 12pm

Irene Oldfather, ALLIANCE Director said:

“Creating friendly communities where people feel involved, empowered and inspired is a great way of reducing social isolation. When we make things better for people with dementia we make them better for all vulnerable adults. Pollock is known for its sense of community and I hope this will be the beginning of a new chapter in its history.”

Tommy Whitelaw, ALLIANCE Project Engagement Lead said:

“We want to empower individuals to make a positive difference in the lives of people living with dementia, their families, and carers. It aims to encourage people to do what they can to make their journeys easier, often in simple ways.”

Marie Murphy, Glasgow Clyde College Social Care Lecturer said:

“We are delighted that Social Care students and staff from Glasgow Clyde College have this opportunity to get involved in the campaign to help raise awareness for carers of people with dementia.  At Glasgow Clyde College we are always keen to highlight issues in our local community and will be working with Dementia Carer Voices and our local MSP and MP, to promote the Pollok Pledge Campaign.”

ENDS

Notes to editor:

The Health and Social Care Alliance Scotland (the ALLIANCE)

1. Irene Oldfather and Tommy Whitelaw are available for interview. To arrange please contact call 0141 404 0233. For all other media enquiries contact Justine Duncan on 0141 404 0231.
2. The ALLIANCE’s vision is for a Scotland where people of all ages who are disabled or living with long term conditions, and unpaid carers, have a strong voice and enjoy their right to live well, as equal and active citizens, free from discrimination, with support and services that put them at the centre. http://www.alliance-scotland.org.uk
3. Dementia Carer Voices, managed by the Health and Social Care Alliance Scotland (the ALLIANCE) is a Scottish Government Project funded project to engage with Health and Social Care professionals and students to promote a fuller understanding of the carer journey, provide a platform where carers can express their views and experiences of caring for a loved one with dementia and to harness the awareness raising activity undertaken by Tommy Whitelaw.

Glasgow Clyde College:

1. Glasgow Clyde College is a further education college in the south and west of Glasgow offering a wide range of full and part-time courses to over 16000 students annually.
2. Glasgow Clyde College is renowned for its industry and university connections and partnerships that ensure courses are designed to offer students exceptional learning opportunities and the best possible outcome.

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

‘what matters to you'? Day - Read The Report Here

You may remember the on the 6th of June, health and social care organisations across Scotland asked people who access support and services ‘what matters to you’?

A report is now available, sharing learning from the day and case studies of what happened when someone asked ‘what matters to you?’

Read the report here!

You can also remind yourself what we did to celebrate the day, and check out our podcasts and case studies here.

Our October- November Newsletter is now Available to read

A Human Rights Based approach to Dementia Care

The Dementia Scotland 2016 Conference focused on the progress of Scotland’s ongoing National Dementia Strategy, whilst also examining the aspirations of the new 2016-2019 strategy. Director Irene Oldfather presented at the morning plenary session about a human rights based approach to Dementia Care, discussing the Charter of Rights for People with Dementia and their Carers, and how to embed and implement a rights based approach.

  

 

Admiral Nurses Forum

Project Engagement Lead Tommy Whitelaw was invited to give the keynote address at the Admiral Nurses Forum, whose theme this year was ‘Creative Approaches in Dementia Care.’  Approximately 170- 180 Admiral Nurses attended, and it was a great opportunity for the project to share its work and promote the voice of lived experience.

You can read more about the day in our blog post and see the tweets from the day in this storify.

Kate Granger Awards 2016

It was an honour for the team when Project Engagement Lead Tommy Whitelaw was nominated as a finalist in the Individual category of the Kate Granger Awards 2016.

Now in their third year, the awards were set up by Kate Granger, a doctor who worked tirelessly to raise awareness around compassion in the NHS through her #hellomynameis social media campaign. There were more than 130 nominations for this year’s awards, and we’d like to thank Joan, a transformation nurse, for taking the time to nominate Project Engagement Lead Tommy.

Read more awards in our blog post. 

111 students from UWS pledge to make a difference

Our You Can Make a Difference Campaign, has worked with the University of West of Scotland several times and we have always been inspired by the response of students. This occasion was no different, and it was great to hold parallel sessions with Cath Cooney, ALLIANCE House of Care Programme Manager, and Susan Donnelly and David Marshall, Health Improvement Advisers from the Care Inspectorate. You can read more about the talks here as well as reading the pledges made my students.

Opening Dementia Resource Centre

Alzheimer Scotland has opened their new Dementia Resource Centre and Day Centre in the heart of the community at Bridgeton Cross.

The centre is for people affected by dementia and their carers, friends and family members to access information, support and advice.

Sharing the voice of lived experience with Anas Sarwar, MSP

Projects within the ALLIANCE had the opportunity to share their work with the Scottish

Labour’s Health Spokesman. Director Irene Oldfather updated Anas Sarwar MSP about the progress of the ALLIANCE and looking ahead to 2017. We will continue to work closely with members of Scottish Parliament to ensure that the voice of lived experience is at forefront of all Scottish health and social care policy.

 

 

Opportunities to have you say

 

• Did you know that unpaid and family carers of someone with dementia can access free membership at both the Health and Social Care Alliance Scotland (the ALLIANCE) and Alzheimer Scotland? Find out more different ways to have your voice heard.
• The European Economic and Social Committee (EESC) are looking to hear your views on the issues addressed in the European Commission’s communication for a European Pillar of Social Rights, at a seminar on 2 November, in Glasgow 1-5pm. For more information and to register for your place click here.
• Do you support or look after someone with dementia?  If so, researchers at the University of Glasgow would like to hear your views.  A £10 gift voucher would be offered to participants and travel expenses would also be refunded. If you are interested and would like more information please contact Kathryn Saunderson: email Kathryn.saunderson@gla.ac.uk , phone 0141 330 8322.
• SPRCN are looking for enthusiastic volunteers to help improve research into primary care. Do you have good ideas on what can really benefit people accessing services and support? Find out more here.
• Researchers from the University of Glasgow Institute of Health and Wellbeing are working in partnership with the Health and Social Care Alliance Scotland to recruit a small team of Volunteer Peer Researchers. We are looking for people with lived experience of long term conditions, or with experience of caring for someone with a long term condition, who have an interest in health research. Find out more here.
• A See Me Community Champion is currently running a survey to factors that may enable or prevent students from speaking openly about mental health issues, and periods of distress, and seeking support while at University. The results of the survey will be used to inform Disability Support Services at University of Strathclyde and elsewhere. The survey is open to anyone currently studying at university. All information will remain anonymous. For a chance to win a £50 Love2shop voucher after completion, email benjamin.mcelwee@seemescotland.org to be entered into a random draw.

 

And Finally..

A new training film has been launched in collaboration with Dementia Carer Voices and Broomfield Hospital to be used as part of the hospital’s induction process. 

Watch now!

 

Find out more about Dementia Carer Voices on our website, twitter, by e-mail or by phone on 0141 404 0233

 

A proud son today - Master of the Open University Health,SocialCare,Policy Making Influence

                        

                          

I am so very honored and grateful to the Open University for the great honour to have been awarded today a  Honorary Degree

 Master of the University for Health,Social Care,Education and Policy making influence 

for my work across the UK on Dementia and caring 

With great thanks to Peter Horrocks CBE (Vice chancellor),Joyce Cavaye and all at the Open University

Open University statement 

Tommy Whitelaw is one of the UK’s most effective and influential campaigners for people with dementia and their families.

For many years, Tommy had a successful career in the music industry, where he worked with the likes of Kylie Minogue, the Spice Girls and U2 in merchandising operations.  But in 2007, his mother, Joan, was diagnosed with vascular dementia and he gave up work in order to care for her. 

Despite his heartfelt love for Joan, Tommy found the day-to-day experience of care incredibly difficult. Understandably, it was a dark and difficult time, and Tommy became increasingly lonely and isolated as he battled against the complexities of the health and social care system. 

Tommy believed there had to be a better way: and he set out to make a difference for the thousands of carers like himself. He started a blog and a campaign, not to raise money, but to raise awareness among professionals, politicians and wider society. 

In 2011, he walked across Scotland, collecting the stories of other carers like himself. These stories are deeply moving in their selflessness, generosity, and compassion. But they are also testimony to the many unnecessary struggles that drain carers of time and energy which would be better focused on their loved ones. 

In 2014, he presented many of these stories directly to First Minister Nicola Sturgeon. As a result, many Members of the Scottish Parliament made personal pledges to tackle the problems associated with dementia care – from the invisibility of family members, to the lack of support in rural areas, to training for student nurses, and the specific needs of veterans. Tommy is now a project engagement lead at the Health and Social Care Alliance’s Dementia Carer Voices Project, where he uses these stories to help professionals focus on the people, not the disease.  

The Open University has developed several modules which help students to understand and respond sympathetically and appropriately to the particular issues which dementia presents. We have benefited tremendously from Tommy’s insights, and he has used videos and lectures to open our students’ eyes to the experience of caring for someone with dementia. 

Today there are more than 850 000 people living with dementia – one in fourteen people over the age of 65. As the population ages, it is predicted the numbers affected will rise to more than a million in the next ten years, and two million by 2051. 

Or, to put it another way, we will all know someone affected by dementia, and many of us will need to grapple directly with the emotional and practical issues involved.  Each of us therefore has a vested interest in ensuring that every single person affected by dementia – both   living with dementia  and their families – is treated with the respect and dignity that they deserve. Tommy’s work is helping to make that a reality. 

It is an honour to thank him on behalf of all our students who have benefited from his work, to acknowledge his commitment to this vital cause, and, of course, to remember his beloved mother, Joan.

By the authority of the Senate, I present to you for the degree of Master of the University, Tommy Whitelaw. 

I am truly proud to have received  this honorary degree and look forward to working closely with all at the Open University over the next years 

I would like to dedicate this award to My Mum Joan,and my dear friend Irene Oldfather's  mum Margaret, Irene Oldfather ,Ian Welsh, My DCV team  mates Laura & Ashleigh all my colleagues at the ALLIANCE, the incredible people who share life stories with us  and the inspiring people who I have met on my tour across the country 

And  to First Minister Nicola Sturgeon for inspiring me to keep going as a son and campaigner and  The day she held my mums hand a few weeks before mum  passed away     

Tommy Whitelaw awarded Honorary Master of the Open University October 2016 

Tommy Whitelaw, Project Engagement Lead for Dementia Carer Voices and long-time campaigner has been awarded an Honorary Master of the Open University for his exceptional contribution to the education of health and social care workers, managers and policy makers on the needs of people living with dementia, their families and carers.

Tommy’s campaigning journey began in 2011 when he undertook a walk round Scotland’s towns and cities to collect hundreds of life story letters from individuals caring for a loved one living with dementia. Tommy was caring for his late mum Joan, who had vascular dementia and felt passionately that no one should have to face the confusion, loneliness and isolation that too often becomes part of the caring experience. Tommy presented these letters at the Scottish Parliament to ensure that real people’s experiences are at the heart of the decision making process.

Since then, he has engaged with thousands of carers through his ‘Tommy on Tour’ blog and as Project Engagement Lead with the Health and Social Care Alliance’s Dementia Carer Voices Project, conducting frequent talks to health and social care professionals, students and carer organisations across Scotland and indeed the UK to raise awareness of the impact of dementia on people and families, and the importance of empowering carers in carrying out their difficult but vital role. He and the team have also made a series of videos which have been used as key learning resources by the Open University, with many students also attending Tommy’s educational seminars to really embed the importance of genuine person centred care.

The team are incredibly proud of Tommy for this incredible achievement, and for the work he does on a daily basis. We would like to say a huge congratulations to Tommy for what is a truly outstanding accomplishment.

Upon receiving the award, Tommy said:

“I’m really privileged to receive this Honorary Master of the University from the Open University. Arriving home from a talk and receiving the letter the day after my mum’s birthday was particularly special.

The work we do is really based on people and relationships, so I would like to dedicate this to my mum, and my friend and colleague Irene Oldfather’s mum, along with my colleagues Laura and Sarah, and Joyce Cavaye for the nomination.

As a project, we are looking forward to working with the Open University and excited to have the opportunity to work with the future of health and social care.”

Speaking of the award, ALLIANCE Director Irene Oldfather said:

“I first met Tommy in July 2011, a few months after my mum had died.

I was at that time promoting work on the Charter of Rights for People with Dementia that I had started in Parliament. I recognised a kindred spirit.

Within the sadness of Tommy’s story, there was an enthusiasm and determination for change that can only come from the journey of loss that dementia can be.  I say loss – but somehow even within and around that deep daily loss is something that cannot be broken even by dementia – unconditional love. The privilege of caring – a special smile, a small gesture – even when communication is gone, a meaningful shared look can and often does, say it all. And you think – how lucky am I – how lucky am I to have today, with this wonderful amazing beautiful person who did everything for me – my mum?

I don’t think anyone in Scotland has done more to raise awareness and to campaign than Tommy and it is right and fitting that those efforts have been recognised in his Honorary Degree from the Open University.

It is almost four years to the day that I first met Tommy. I am proud of what he has achieved and I know his mum would be too. Sometimes it is from the deepest darkest places that the light shines through. Since that day four years ago Dementia Carer Voices has been set up. We are determined that the light and sparkle of wonderful people will never be diminished even by dementia and that the wonderful mothers of this world will always be remembered. Thank you Tommy for all you do to make that happen.”

  

 

Further Help and Information

                                                                 

NHS Health Scotland – dementia publications web links

Coping with dementia: A practical guide for carers

Date: 10 April 2014

Description: This book contains information and advice for people who care for someone in the middle to late stages of dementia (moderate to severe dementia). It aims to: – help you feel less alone – give you practical advice on coping – help you to find caring more rewarding and less stressful – show you where to go for help and for more information.

http://www.healthscotland.com/uploads/documents/1469-CopingWithDementia.pdf

Coping with dementia DVD

http://www.youtube.com/watch?v=uX7iRP9p73s&index=2&list=PLCA24083BF562AE5C

Understanding dementia: A guide for young people

Date: 22 August 2012

Description: This booklet is for you if you’re a young person, and someone you’re close to has dementia. Maybe it’s your mother or father, one of your grandparents, another relative or a family friend. This booklet will help you to understand what dementia is, and what’s happening to the person with dementia, cope with the effect the person’s illness has on you, and find help and support if you need it.

http://www.healthscotland.com/uploads/documents/19289-UnderstandingDementia.pdf

Worried About Your Memory?

This resource is designed to help you understand more about memory loss, so if you are worried – either about your own or someone else’s memory – you can seek advice and, if necessary, get treatment.

http://alzheimers.org.uk/site/scripts/download_info.php?fileID=339

Living Well With Dementia (previously Facing dementia)

Date: 14 April 2014

Description: A booklet for those who are either worried about dementia or who have been diagnosed. It provides reassurance and suggests practical steps to improve or maintain dignity and the quality of life as far as possible.

http://www.healthscotland.com/uploads/documents/15-LivingWellWithDementia.pdf

Living Well with dementia DVD

http://www.youtube.com/watch?v=bfDfP61pl8A

Younger people with dementia: living well with your diagnosis

Produced by NHS Health Scotland in partnership with Alzheimer Scotland and the Scottish Dementia Working Group, ‘Younger people with dementia: living well with your diagnosis’ DVD is designed for the person who has just been diagnosed with younger onset dementia (dementia under the age of 65) and for the family and friends of the person diagnosed.

The DVD provides insights and information from younger people with dementia and their family carers about their journey to diagnosis and which resources are available to support living well with dementia. The DVD aims to provide information on:

• helping people in the early stages of diagnosis to understand more about their illness
• sharing experiences around how to ‘live well’ after a diagnosis of dementia, as well as offering practical advice on coping with its effects
• suggesting where people with younger onset dementia, their families and carers can go for further support.
• Younger people with dementia: living well with your diagnosis DVD
• http://www.healthscotland.com/uploads/documents/22313-Younger%20people%20with%20dementia.pdf

https://www.youtube.com/playlist?list=PLdtTilZi8S7_w71ZJv2ajj80NePtIwLa7

MindMate App

MindMate is the ultimate platform for people with dementia, their families and caregivers. The award-winning MindMate App engages people with Alzheimer’s and helps them stay independent. Together with MindMate+ this gives caregivers and family members peace of mind by providing remote access and useful tools to offer a helping hand regardless of their location.

With great support of the ALLIANCE, the Dementia Carer Voices team and especially Thomas Whitelaw as community advisor, the MindMate Team follows the mission to not only raise awareness but to make a real difference for people affected by dementia.

Find out more: www.mindmate-app.com

Download the free IPhone and IPad App here: itunes.apple.com/gb/app/mindmate-empowering-people/id1030422375

Dementia and Sight Loss

The Royal National Institute for the Blind together with Alzheimer’s Scotland have produced an information booklet on Sight Loss and Dementia, available here.

They have also produced Top Tip Cards on how to support Older Person with Sensory Loss, available here and here.

For further support, please call the RNIB Helpline on 0303 123 9999

A full list of their resources can be accessed at

http://www.rnib.org.uk/scotland-how-we-can-help-learning-disability-outreach-and-assessment-scotland/complex-needs-and

A full directory of our videos can be found on our Youtube channel here.

There is an increasing range of help available to support day to day life for those affected by dementia, including assistance with speech and language, nutrition, adaptations and equipment and specialist occupational therapy services. Information about the full range of services available to support people with dementia and their carers in your area can be obtained by contacting your local Social Work Department and /or GP practice.

Under the Scottish Government’s Post Diagnostic Support Guarantee, anyone diagnosed with dementia on or after 1 April 2013 is entitled to receive a minimum of a year’s worth of dedicated post-diagnostic support, coordinated by a named link worker. This support is designed to help the individual and their family adjust to the diagnosis, navigate through the services available and plan for future care. You can find out more by contacting your GP or local Community Mental Health Team.

Alzheimer Scotland’s specialist dementia services provide personalised support designed around each individual, including 1:1 support and day services. Their local Dementia Advisors and 24 hour Dementia Helpline are always there for advice and information. Their branches and community activities, from dementia cafés to football memories, are a great way to meet other people and benefit from mutual support.

24 hour Dementia Helpline: Freephone 0808 808 3000

www.alzscot.org

‘Getting to Know Me’ resource

If the person you care for is admitted to an acute hospital setting, you can ask a member of staff for a ‘Getting to Know Me’ form. This allows you to record personal information about their likes and dislikes, names of family and friends, and what may be worrying them while they are in hospital.

The information, which will be kept at the bedside, helps staff to build a fuller understanding of your loved one’s life story, preferred routines and specific pieces of information which may be helpful during a hospital stay or attending outpatient services such as what helps them to rest or relax.

The Charter of Rights for People with Dementia and their Carers in Scotland sets out the rights of people with dementia and those who support them, aiming to empower them and the community as a whole to ensure these are recognised and respected.

The Standards of Care for Dementia in Scotland are designed to inform and empower people with dementia and their families and carers on the level and quality of care they should expect from all dementia services and in all care settings. The standards also tell people what they can do if they think the standard of care to which they are entitled is not being met.

 Care Inspectorate

Regulates the quality of social work and registered care services. It can investigate complaints against registered care providers.

Compass House, 11 Riverside Drive, Dundee, DD1 4NY.

Tel: 0845 600 9527 Email: enquiries@careinspectorate.com

www.scswis.com

Self Directed Support

The Self-directed Support Act aims to provide local authorities with a power to support carers in their caring role. To find out more information, please visit  www.selfdirectedsupportscotland.org.uk 

Scottish Public Services Ombudsman

Considers complaints about organisations providing public services in Scotland, normally only once you have been through the complaint procedure of the organisation involved.4 Melville Street, Edinburgh, EH3 7NS.

Tel: 0800 377 7330 Email: ask@spso.org.uk

www.spso.org.uk

Equal Partners in Care

Equal Partners in Care (EPiC) is a joint project between NHS Education for Scotland (NES) and the Scottish Social Services Council (SSSC).

They aim to support workers from health, social services and other sectors to work in partnership with carers and young carers, and to achieve better outcomes for all involved in the caring relationship.

Healthcare Improvement Scotland

Healthcare Improvement Scotland is the national healthcare improvement organisation for Scotland and part of NHS Scotland. They work with people who use supports and services, carers, communities, staff who provide care in hospitals, GP practices, clinics, NHS boards and the public.

They promote 5 key “Must Do with Me” areas which aims to ensure that people are at the heart of their health care and support plans.

Health Innovation Network

The Health Innovation Network have put together a Dementia Peer Resource Pack  which brings together evidence based resources to help community groups and funders set up and run peer support groups, as well as guidance on how to make older people groups more dementia friendly. It includes films, case studies, policy and research related to the benefits of peer support, as well as resources on funding, staff training and evaluation of groups. It was developed in England and whilst the policy landscape is different, it is a valuable learning resource.

Dementia and Sight Loss

The Royal National Institute for the Blind together with Alzheimer’s Scotland have produced an information booklet on Sight Loss and Dementia, available here.

They have also produced Top Tip Cards on how to support Older Person with Sensory Loss, available here and here.

For further support, please call the RNIB Helpline on 0303 123 9999

A full list of their resources can be accessed at

http://www.rnib.org.uk/scotland-how-we-can-help-learning-disability-outreach-and-assessment-scotland/complex-needs-and

A full directory of our videos can be found on our Youtube channel 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