Are you a carer?





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






If you would like to share your story or make a persoanl pledge to make a difference please email tommy.whitelaw@alliance-scotland.org.uk

Thursday, 12 January 2017

Putting care at the heart of our communities


“Our residents do not live in our work place, we work in their home.”

I have been sharing this quote from a care home worker and thinking about it a lot over the last few weeks.

I feel very honoured as part of our ‘You Can Make a Difference’ Campaign and tour across the country to spend most days speaking to staff in hospitals, hospices and care homes, or our next generation of healthcare professionals in colleges or universities.

So often I travel home feeling inspired by the people that I’ve met and pledges that we’ve received.

The quote made me reflect on the way that residential care is often thought about, both in terms of the people who live there and the staff who work there.

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Communities are in our hearts, we are the heart of our communities and our homes are at the heart of our community and relationships. This isn’t something that should change when we start live in a care home, after all, as the quote points out – this is our home now.

If we want to create friendly and supportive communities we have to include care homes, the people who live and the people who work there.
If we are going to ask people ‘what and who matters to you?’, let’s make sure we ask the people living and working in care homes too.

What can you and I do to help change perceptions, and make sure that people living in residential care remain at the heart of our communities?

For my part, a big focus of my work through the Dementia Carer Voices project has been about highlighting the unique life stories of people living with dementia and their carers, and celebrating the role of the staff that make a real difference to their lives.

“Our residents don’t live in our work place, we work in their home”. In fact, our residents don’t just live in our care homes, they live in our communities and we can all play a part in supporting them to live well and stay included.

Tommy Whitelaw
Dementia Carer Voices Project Engagement Lead
The ALLIANCE

Tommy 


Campaign Update

 

Dementia Carer Voices has engaged with over 60,000 people in person over the last 2 years at over 500  talks and event. Collecting 12,000 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 putting pledges in to practice make a difference.

 

We are very inspired by the different ways individuals, hospitals, universities, care homes and care at home teams have been putting pledges in to practice. 

 

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/

 



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

 


Friday, 6 January 2017

Read Our report on the letters we have received - The International Journal of Aging and Society,

Journal gives platform to carers of people with dementia
A joint article has been published between the ALLIANCE and the University of Glasgow, based on the letters Project Engagement Lead Tommy Whitelaw collected from carers across Scotland. These letters have been analysed by Jane Joy and Diane Willis from the University of Glasgow, with the results of their study now available:
Examining Dementia Caregivers’ Experiences, Link to FULL published  Article   The International Journal of Aging and Society, Volume 7, Issue 2, pp.59-72, November 10, 2016. By Jane Joy, Thomas James Whitelaw, Irene Oldfather and Diane Willis.
                     Please see below a short summary of the article 


1.    Introduction

Professors Jane Joy, University Teacher, Nursing and Health Care and her colleague Diane Willis, University Lecturer, Nursing and Health Care, at the University of Glasgow performed an independent analysis of 417 letters from carers sharing their experiences. The letters were gathered  after Tommy Whitelaw, now Dementia Carer Voices Project Lead, asked carers to share their stories with a view to improving policy and practice.

The report below summaries some of the key findings from the report.

2.    Findings

·         Many people reported becoming a carer through chance by visiting a friend or relative, often someone that they hardly knew, and performed took on a caring role as an interim measure believing that more support would be put in place
·         A large proportion of the letters began with ‘my mother/father had just had a stroke, cancer, hip replacement, diabetes’, highlighting that people are living with multiple conditions/comorbidities.

·         Carers have very little ‘downtime’ – many of the letters were written very late at night/very early in the morning

·         The emotional energy of caring was a key theme that carers described in their letters. Carers described their sense of loss, many of whom are themselves in their 70s and 80s and have been married to their partner for several decades:

o   ‘‘I am 80 years of age I am finding it tough and there is no one to share and help me get through. I feel so low at times and LONLEY. I NEED a human listening ear and also an understanding one.…we had a very happy marriage until my husband took dementia and I HAVE LOST A MARRIAGE AND LOST MY HUSBAND’ [carer emphasis].
o   ‘I had our retirement all planned, the holidays etc., the future I saw for us is no longer there after all my hard work.  My world collapsed around me’ 
·         Many carers are isolated and expressed their feelings of loneliness, citing a lack of understanding and having no one to talk to:

o   ‘I feel lonely and isolated. Sometimes I could cry with loneliness’ 
o   ‘I can’t go out after mum comes back from the daycentre.  I am in every night... but lately I have had a feeling of being imprisoned and without freedom.. caged. The phone rarely rings and friends have moved on’  

·         This isolation was often due to lack of respite or time to socialise, with many echoing that caring is a full time responsibility:
o   ‘’I have been spending 168 hrs a week in my caring role like so many other carers.’
             This has led to an impact in carers health and wellbeing, with a large proportion of carers fearing for the future should they become ill: 

o   ‘She developed dementia and was unsettled all day and night. My father had little or no sleep and was unwell himself so I spent every day in their house giving him a break.  My health soon failed because of all this and I found myself on anti-depressants’
o   ‘Our relationship has changed I do more for him.. I worry for the future what if I get ill?’

·         Frustration was another theme that emerged from the letters. Carers expressed frustration at their concerns not being taken seriously, at the difficulty in obtaining a diagnosis and at the lack of support. This was also identified by a number of carers in the Dementia Carer Voices survey which captured the views of a further 160 carers.

o   ‘The doctor didn't even take time to review [him] and told me he was depressed because he was able to answer all of the questions…… When he died his GP rang to ask if I was ok – I asked if he had dementia [they replied] “yes of course he had vascular dementia” this was the first time I was given an official diagnosis’  
o   ‘..his behaviour deteriorated, but he was able to put on a front to other people so no one believed me.  He was entirely convincing and I was [thought of as] stupid’
o   ‘My purpose in writing is to ensure that ......health care professionals do not just tick the box but listen to families who know the person’

·         Many carers felt abandoned by health and social care staff, and that their rights were not being respected:
o   ‘Health service consultants, doctors, nurses do not understand the stress of the carers physical, mental and emotional feeling on top of which [we] have no medical training at all….the only daily help I had at the age of nearly 80 was a carer visiting in the morning.’
o   ‘Patients rights means if he refuses he does not have to participate.... This means I am left to toilet him.. The safety assessment requires two.. But I am left to carry out tasks on my own .. Where are my rights?’

·         Over and above and emotional and physical strain, a caring role can cause severe financial strain, particularly with carers who have had to give up work or reduce their hours at work, or who are retired.
o   ‘When he went into a home and I had to live on my pension... I struggled for a year before I found out I could take half his occupational pension for my own use’
o   ‘I got into serious financial debt because no one directed me to the attendance allowance, community charge discount or carers allowance’  
·         A further area of concern was the discrepancies in the care provided:

o   ‘It was very difficult looking after my husband and myself as I am quite a small person and my husband was very heavy.... I had to have day care four days as my health began to suffer...  my husband fell down stairs.. I received  some care from my local authority.. one hour  in the morning to shower and dress my husband’
o   ‘Respite care was like a kennel for old people with nothing to do’

·         These responses are contrasted by pockets of good practice:

o   the staff there were wonderful and put me in touch with day care providers including Alzheimer Scotland. This took the pressure off me
o   ‘A wonderful CPN and a local lady from crossroads came to sit with my mum to give dad a break the good morning and good night ladies (home helps) were also a great help.’ 

This identified that good care was care that encompassed not only the person with dementia but also the carer.

3.    Conclusion
The concluding remarks of the report reinforced the same issues of being of key concern to carers; namely the frustration at the lack of forthcoming information, the discrepancies of care, the emotional, financial and physical demand on carers and the gap between policy and practice.

“It was clear that people with dementia and their carers were not able to engage with the system effectively at present. Very often carers often had nowhere to go and no one to turn to whilst essential equipment e.g. incontinent pads were difficult to obtain. The burden of care impacted on their health and well-being as did finances. Within this were pockets of good practice, which carers defined as services that listened, acknowledged their experience and met their needs and the person with dementia. At present despite the plethora of policy aimed at increased awareness and support for people with dementia, there is a gap between what support has filtered through and the general malaise these carers felt.  Services and policy makers need ensure that there are opportunities for shared/joint activity including innovative shared care/respite, support and counselling services for Carers looking after people with Dementia  and better integrated information about dementia, benefits and support.”

About Dementia Carer Voices

Dementia Carer Voices seeks to:

  • 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 lives;
  • Work with other Carer Organisations and key stakeholders within and beyond the ALLIANCE’s network to ensure that relevant strategies are well informed by the views of service users.
  • Harness the work undertaken to date by the Tommy on Tour campaign, and support Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland.

About the ALLIANCE

The ALLIANCE has three core aims; we seek to: 

·         Ensure people are at the centre, that their voices, expertise and rights drive policy and sit at the heart of design, delivery and improvement of support and services.
·         Support transformational change, towards approaches that work with individual and community assets, helping people to stay well, supporting human rights, self management, co-production and independent living.
·         Champion and support the third sector as a vital strategic and delivery partner and foster better cross-sector understanding and partnership.
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
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Can you Help ,share your story - lets make a difference one love story at a time



This campaign is built on life stories, my wee mums life story was a love story.  She loved and cared for everyone, for her husband, my hero - my dad and for her children.  My Mums amazing kindness and ability to care for everyone was inspiring as everyone deserves the right to keep their life closer to a love story and as far away from tragedy as possible.



Society has its part to play I loved my mum but we spent too much time lonely isolated and the lack of understanding towards us challenged the love story all too often.  We can’t at this time cure Dementia but we can cure so many of the challenges that are allowed to play such big parts in our lives.  Loneliness, isolation, understanding and awareness we can help change them.

We have to celebrate the greatness in people the lives they led and should be allowed to lead. I believe to help someone we need to know them, we need to keep their love story on track and learn about them if we use Dementia and their diagnosis as the starting point then we fail people.

My mum Joan Whitelaw was too often viewed as a wee woman with Dementia and I as her son and carer too often felt ignored and I want to help change that.

So I collect life stories to take to all who need to read them, to show the lives people lead and the impact society is allowing Dementia to have and the part we can play.

Love story or tragedy what part will you play?

You can help by sending your story, thoughts or opinions to Tommy.Whitelaw@alliance-scotland.org.uk  and my promise is the same as my promise to mum to take them to all I think should and need to read them,

 hopefully changing attitudes, raising awareness and understanding one love story at a time.

Tommy  
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
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Thursday, 5 January 2017

Monday Speaking Institute of Pharmacy and Biomedical Sciences University of Strathclyde

Hi 

With great thanks to Anne  Boyter Director of teaching  Institute of Pharmacy and Biomedical Sciences University of Strathclyde, for kindly inviting my friend and Colleague Graeme Morrison
@ALLIANCEGraeme  Prescription for Excellence -Inclusion Officer and myself to speak to 120 3rd year Pharmacy students on Monday January 9th 

We are both so very honoured and looking forward to meeting everyone and speaking together.

look our over the next few weeks for a blog post about the day. 


tommy 




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
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Great Honour Speaking Erskine Hospital January 2017

Hi 
With Great thanks to our great friend Derek Barron @Derek Barron for the kind invite to speak ( 2 talks at Erskine Hospital January 2017  Erskine is Scotland's foremost provider of care for veterans and their spouses
We are so very honoured to be invited and continue our great relationship with Derek.We Launched our first pledge talks and trees with Derek back in 2015 at Nhsaaa  along with a short film
we are looking forward to continue our work together with derek over the nexrs years in this new role as Director of care and linking up with our great friend Janice Mcalister @janicemcalister   again at the talks and Dr Claire Copeland 
 you can view more info about Erskine and the day below  
 
Erskine is Scotland's foremost provider of care forveterans and their spouses, Erskine provides unrivalled nursing, residential, respite and dementia care within four homes across Scotland.

An important aspect of ensuring the care we provide is of the highest standard is to ensure our staff have the training, skills and knowledge to support them in delivering compassionate, person and relationship based care.  

On 17th January we will be holding two training sessions for our staff, focused on delirium and dementia.  The event will take a four pronged approach, each neatly dovetailing together to provide a rounded view of delirium and dementia. 

Clinical: Dr Claire Copeland (consultant physician) will provide a clinical perspective of the signs and symptoms of delirium, the need for urgent identification and intervention, Janice McAlister (Alzheimer Scotland Nurse Consultant) will provide a similar input focused on dementia. 
Physical activity: Janet Leith (Physiotherapist -Erskine) will provide an overview perspective if the impact of delirium on physical activity. 

Relative: We will have two different Erskine relatives speaking (one morning, one afternoon) and National Carer lessons: Tommy giving a personal but national dementia carers perspective.

The learning outcome for our staff will be increased clinical knowledge to enable to them to better recognise and treat delirium, and a great understanding of their personal impact on the lives of those with whom we share care.



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

Wednesday, 4 January 2017

Thank you for the Kindness 2016 - Here are a few Moments from the last Year

             

As 2016 comes to a close we thought we’d share some updates and highlights from the last year below 
My wee blog that started when caring for my kind mum Joan, our films,  produced  to share our story has  now reached 1 Million reads, film views and meeting people in person at talks on the tour.


I want to thank everyone from my heart who has taken the time to read, share, attend a talk, send a letter or comment for the great kindness and support.


This kindness and support played such a big part in  helping  my mum living with dementia and myself as a son and carer and has continued to do so till this day as project engagement lead at dementia carer voices


Thank you to everyone for your commitment and inspirational words over the last year, pledging to make a difference to the lives of people with dementia, their carers, and families  



You Can Make a Difference Campaign
Dementia Carer Voices reached a new milestone of 12,000 pledges as part of its mission to give Health and Social Care Professionals and students nationwide a fuller understanding of what it means to be a carer of someone with dementia.
The campaign offers carers of people with dementia a chance to have their stories told to professional and students. The pledges encourage them to reflect on what they have learnt and pledge how they can make a difference to the lives of people with dementia and their carers.
Hospitals, Care Homes, Universities, and Colleges have created pledge trees to help support colleagues to fulfil their pledge, and to allow values based reflective practice. It aims to empower individuals to make a positive difference often by making a simple change,
 “I pledge to always see the person and not the dementia, and to always show compassion and care to others”
Since February 2014, the campaign has engaged with an estimated 70,000 people over the course of 500 talks.12,000 pledges  have been collected from different audiences all over the country and have encouraged not only health and social care professionals, but politicians and members of the public to take part by pledging their support to the campaign.

                                             Launching a Friendly Community Pledge
In partnership with Glasgow Clyde College and Humza Yousaf MSP, Minister for Transport and Islands, Dementia Carer Voices launched a community pledge in Pollok, giving constituents the chance to reach out to their neighbours and help reduce isolation and loneliness.
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. From the success of our You Can Make a Difference campaign, the team wanted to extend the invitation to the community to make a pledge to the whole community of Pollok, not just to people living with dementia and their carers, but to their neighbours and wider community.
Chaired by Director Irene Oldfather, the event celebrated pledges made by students at the Glasgow Clyde College, introduced participants to their local link worker, and the community assets currently mapped on ALISS.

                 Journal gives platform to carers of people with dementia
A joint article has been published between the ALLIANCE and the University of Glasgow, based on the letters Project Engagement Lead Tommy Whitelaw collected from carers across Scotland. These letters have been analysed by Jane Joy and Diane Willis from the University of Glasgow, with the results of their study now available:
Examining Dementia Caregivers’ ExperiencesThe International Journal of Aging and Society, Volume 7, Issue 2, pp.59-72, November 10, 2016. By Jane Joy, Thomas James Whitelaw, Irene Oldfather and Diane Willis.
 Publicity
Director Irene Oldfather and Project Engagement Lead Tommy Whitelaw have appeared on a number of broadcasts to promote rights and the carer voice, including
  • BBC Radio 4 Women’s Hour
  • Community Chanel
  • STV Glasgow
  • BBC Radio Scotland with Kaye Adams
  • BBC Scotland 6 o’clock news
  • BBC Radio Scotland with John Beattie
  • BBC Radio 4: Four Thought
Our selection of films has also been used as part of training in Universities across Scotland, and various health boards and social work services, helping to promote culture change within health and social  care       

                                                        Awards
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Kate Granger
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.
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Local Hero
Humza Yousaf, MSP for Glasgow Pollok, nominated Project Engagement Lead Tommy Whitelaw, lifelong resident of Pollok for a Local Hero award.
Speaking about the nomination, Humza Yousaf, MSP said ‘Tommy has worked relentlessly in highlighting the issue of dementia and in trying to improve the quality of life of people with dementia and their carers.’ 
 Master of the University for Health, Social Care, Education and Policy making influence.
 picture-frame
In October, Project Engagement Lead Tommy Whitelaw received his honorary masters from the Open University. The Open University has developed several modules which help students to understand and respond sympathetically and appropriately to the issues which dementia presents. They have benefited tremendously from Project Engagement Lead Tommy Whitelaw’s insights, and he has used videos and lectures to open students’ eyes to the experience of caring for someone with dementia.
Launching of NHS England Framework




NHS England’s new national framework, Leading Change, Adding Value was launched on the 18th May, having been co-developed with a wide range of national organisations, practitioners, people with long term conditions, carers and the public. Dementia Carer Voices helped influence this framework so it was a huge honour for Project Engagement Lead Tommy Whitelaw to introduce Professor Jane Cummings, the Chief Nursing Officer for England, at the launch of the framework. The Launch was streamed live around the country and as far as Australia, New Zealand and America.
Conferences

Over the last year Dementia Carer Voices has attended several conferences which have helped promote our activities and the ALLIANCE’s work, as well as a chance to participate in shared learning, and extend our network.



RCN Conference

Project Engagement Lead Tommy Whitelaw was invited alongside Nicola Sturgeon, to give one of the Keynote speeches at the RCN Congress 2016 which was held at the SECC.  The event was live streamed all over the world, and it was fitting that the keynote speech followed the RCN’s debate on dementia where Congress adopted the resolution ‘to lobby for better policy, to ensure a fair deal for dementia patients and carers when admitted to acute care.’
 irene
Dementia Scotland 2016
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.

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Carer Engagement
Dementia Carer Voices endeavours to engage with carers through mixed medium content and approaches in order to ensure the voices of carers are captured, and crucially are used to inform policy and practice.
The project has begun expanding our collection of case studies with podcasts and short video clips in which we speak to people with dementia, carers, and health and social care staff, about their experiences. See our podcasts and case studies here.


Staff Induction Film In Partnership with HealthWatch Essex and  Broomfields Hospital 



Four Thought

Project Engagement Lead Tommy Whitelaw was invited to take part in a live broadcast for BBC Radio 4: Four Thought programme.

“If we really are going to make a difference to each other we have to change the conversation from ‘what’s the matter with you’ to ‘what matters to you'”.

Project Engagement Lead Tommy Whitelaw

The programme was recorded in front of a live audience at Somerset House, presented by Mike Williams and produced by Sheila Cook. Listen to a repeat of the programme here.

Thank you to everyone, have a happy Christmas and happy new year!

Posted in Events

Read our final newsletter of 2016!

Remember support is available over the Christmas season, don’t be afraid to seek it.
 Find Further information on how to access help  on our website

and you can call the Alzheimer Scotland’s 24 hour helpline 
for free on 0808 808 3000.


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