Tuesday, 21 March 2017

Celebrating People and Nearing 13,000 pledges to Make a Difference




I thought I might share a wee update on our ‘Make a Difference’ Campaign and tour as we approach 13,000  Personal Pledges to make a difference

We have engaged with nearly  70,000 people in person over the last 2 years at over 500 talks  and events , collecting 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

You can read every pledge here at  https://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:


We have a short film to celebrate people and pledges 

Dementia Carer Voices - The story so far https://youtu.be/HQNgbIVimOs

NHS Ayrshire and Arran made a film in partnership with the ALLIANCE and the University of the West of Scotland which shares the journey of the campaign and the impact it has had on the staff. 

The video is available to view at www.youtube.com/watch?v=bGLwzE8YAyM.

Thank you to all who have pledged and supported the campaign to date .We look forward to more meeting more people  who are making a difference for people living with dementia, Families and carers 

Thank you from all the  Team 

Dementia Carer Voices


Tommy Whitelaw, BCAh
Project Engagement Lead
Dementia Carers Voices
Health and Social Care Alliance Scotland (the ALLIANCE)
349 Bath Street
Glasgow G2 4AA
Tel: 0141 404 0233
Mobile: 07921395712
Charity No. SC 037475 
Company No. 307731
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, 16 March 2017

Monday speaking Glasgow University School of Nursing 1st Year Nursing Students

With Great thanks to Jane Joy Senior Lecturer at Glasgow University School of Nursing for inviting Dementia Carer Voices to speak to the Nursing Students this week.
I have had the great honour of speaking at the University a few times before  including being a guest speaker at Staff Nurse Development Days . You can read thee pledge posts from previous  event visits  here. and here 
last Year we also worked  in Partnership with Myself ,our Director Irene Oldfather,the ALLIANCE , Jane and the University on the letters we receive from people living with dementia ,families and carers .You can view the published report below 
We are proud of this on going relationship with the University and look forward to meeting the next generation of Nurses on Monday 

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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Tuesday, 7 March 2017

Aliss - it's all about co-production

This post is taken from our main ALLIANCE website 

Lets hear what my friend and colleague Stephen had to say.....

ALISS.. Its all about co-production 


“So…what is ALISS?”  

I get asked that a lot; I really don’t mind because the people asking are usually looking for ways to help support people, or sometimes are looking for support for themselves. It’s brilliant being able to help!

I usually begin my answer with the first line of our ‘About ALISS’ page on our Beta website

“ALISS helps people find and share information about local services and resources that support health and wellbeing”.

But here’s the thing; it’s struck me that I’m not really answering their question. Instead, I’m telling people about what ALISS does rather than what it ‘is’.

It’s a bit like someone asking me ‘so who is Stephen Plunkett?’ and me answering ‘well I lead on ALISS engagement with stakeholders, build partnerships, and report to the programme board’. That’s part of what I do in my job, but it’s not what defines me a person. I’m a husband, son and friend who tries his best to help people live healthy and happy lives and who still harbours a not so secret ambition to be a rock star! That’s who I am.

Right now there are big changes happening to ALISS. Lots of these are functional and operational changes that are being documented by my colleague Douglas in his own blog. Keep tabs on this as it’s a brilliant way to keep up to date with our developments. Making these changes also provides an opportunity to step back and reflect on those deeper questions about ‘what ALISS is? So I thought I would take this opportunity to share my own view on what defines ALISS.

I believe that ALISS is co-production in action.

Now I know we talk about co-production all the time, but bear with me on this one! You see, ALISS is built around the belief that given the right tools and support, people can and will work together to find, share and maintain information about community resources that can enhance health and wellbeing.

ALISS was created to be different from the traditional model of a centrally administered and ‘standalone’ database of local services. We think that’s an outdated approach which doesn’t fit well with the ethos of collaboration and joined up approaches that we as a nation are aiming to embed within health and social care. We believe that ALISS has an important role to play in helping to realise the ambitions set out in the 2020 vision for health and social care, particularly in regards to the person centred, outcomes focused delivery of services. ALISS can help illustrate the richness of our communities and the scope of services available to support health and wellbeing. We also have big plans around providing other types of data that can help to inform responsive localised planning and commissioning, but that’s a topic for another blog!

So what’s the practical impact of co-production? Well for one the information in ALISS hasn’t been gathered by ALISS staff. Instead, it’s been added by a diverse range of over 1300 individuals and organisations and is the product of their engagement (sometimes professional, often voluntary) with communities and the people who provide services and support within them. The ALISS programme provides support and guidance around things like asset mapping to aid that engagement. Our ALISS digital services provide mechanisms to enable the information gathered to be found and shared. This might be via the ALISS website or through any other website or digital platform that has  ALISS search functionality embedded within it. This is a service that we can offer for free and it’s part of our innovative approach within the digital health landscape. Please don’t hesitate to get in touch if you are interested in finding out more!

I believe that if you are serious about co-production it should be reflected in all aspects of what you do. Therefore we have always tried to embed co-production principles into the operation of the whole ALISS programme. For example, the ‘blue-print’ for ALISS was not informed by the ideas systems designers or developers, but through listening to the lived experience and ideas of ALLIANCE members – disabled people, people living with long term conditions and unpaid carers. Likewise, our stakeholder led innovation and reference groups have provided guidance and critical insights throughout the life of the programme. Even the changes that we are currently making are informed by the learning that we’ve gatheredand are designed to respond to requirements of ALISS users and strengthen the ethos of co-production as the basis of how we operate.

A good example can be seen in the changes we are making around how the information contained within ALISS can be updated and maintained. In our old system, if there was an issue with a resource (say for example a link to a webpage was broken, or the description was out of date) any user could report it, but only the person who added the resource in the first place could fix it. Now that’s fine if they had added only one resource, but what if they had added more than 500? Is it reasonable to expect that they could maintain that level of information? More importantly, does it fit with our co-production approach? Perhaps not, so we are going to respond to and do it differently.

In our new approach, ALISS users will be able to suggest edits to any resources that they believe contains inaccurate or out of date information. The edits will be reviewed and checked by other users before being applied to the resource. In essence, the responsibility for maintaining information will be opened up to all users and will no longer sit solely with individual account holders. This will be replaced by a new collaborative approach in which the responsibility is shared.

There are lots more examples of how the changes that we are making will strengthen co-production and collaboration in ALISS and I’ll be using this blog to discuss these in the coming months. That said, co-production isn’t always easy so I’ll also be communicating some of the challenges we have faced and explain how we are working to overcome them.

So there you go, co-production really does define what ALISS is all about. In fact, it’s what makes ALISS work!  

Stephen Plunkett, ALISS Partnership and Development Manager, the ALLIANCE  

Monday, 6 March 2017

Wednesday Speaking the Alzheimer society Northern Ireland annual Conference


With Great thanks to Adele Doherty and all at  the Alzheimer society Northern Ireland for the kind invite to speak at thier annual conference on March 8th. 

I am so very honoured to be invited and look forward to meeting everyone,listening, learning and speaking 



Saturday, 4 March 2017

Guest Post via Shaun Maher Everyone has a voice that needs to be heard

This weeks guest blog post comes from a very dear  friend  Shaun Maher, Strategic Advisor at Scottish Government, supporting the development of ‘What Matters to You?’ health & social care system.  You can follow Shaun on Twitter at @S4Maher
The thoughts in this blog are inspired by a video story shared by Louise page  and Alan Ainsley about their experiences of the healthcare system.  You can listen to their story here and here.  The first link is a shorter version, the second provides a deeper insight and is a little longer.
Listening is one of the most important and powerful things we can do.  It not only has an effect on the person listening, but can also have a profound impact on the person who is being listened to. The act of listening honours another person’s story or opinion and can make them feel valued, important, cared about. And the listener – what’s in it for them?  They gain deeper insight and understanding of the thing the other person is talking about, or indeed the person them self.  But not only this, they can also gain new perspectives and understand more about how the world looks and feels through another person eyes.  Listening helps us to develop empathy, compassion and understanding.
Yet, listening, really listening, can be very difficult to do well.  We are so busy! Our mind is full of all the things we need to do, want to do and have to do! Our mind is often a busy noisy place with lots going on – it can be difficult to find space to think sometimes let alone listen properly to what someone else thinks!  Not only this, by the time we reach adulthood our view of the world and our belief systems have become much more fixed which means understanding different or opposing world-views or opinions can be difficult.  We have a tendency to filter everything we hear and see through the beliefs we hold, dismissing or downplaying anything that disconfirms – enlarging or emphasising anything that agrees.
Good listening, or perhaps what we might call deep listening should be a core skill for all of us, but especially so for people who work in the caring professions.  Our job is all about listening, and listening well.  Traditionally, by listening to someone we make our diagnosis of their support, care or treatment needs – this is what we do. But do we really listen deeply to them and truly hear their voice and try to step into their shoes? Or do we filter what we hear through our professional perspective and belief systems?  Listening isn’t about us always doing things to or for people – listening can be the end rather than just a means to an end.  This deeper more purposeful listening helps to generate empathy – a powerful ally to help us generate high quality compassionate relationships focused on the things that really matter.  But being listened to also has many benefits for the person telling their story too.  It can help to build self esteem and confidence as well as generating insight and discovering new strengths.  Sometimes it is only by telling our story that we realise how well we have coped and the resilience we have within us.  So, it’s important to remember listening isn’t always about doing – often it’s just about listening and listening well.
The ‘Levels of listening’ framework from Theory
is a helpful tool to help us listen more deeply and also to notice when we aren’t.  This framework describes four different levels of listening that can help us to move from a place of superficial listening to a place of deep listening that opens our mind, heart and will, facilitating a much more meaningful, purposeful connection with another person.
Stories are a powerful medium to help us appreciate and understand the impact of good listening, or the harm caused by failing to listen well.  Louise  and Alan’s story, along with Tommy’s story of his experiences caring for his mum are two such examples and there are many others too.  Louise  and Alan’s experiences have much to teach us and the story has been given as a gift to help us understand more deeply the impact good listening. It’s a powerful story with a powerful message about the importance listening deeply and connecting with a fellow human being.  When the listening was good the care was good, when the listening was superficial and clouded by the professional perspective the quality of the care was poor impacting on psychological wellbeing, quality and quality of life – perhaps even causing harm?
I commend this story to you and ask you to think of it as a gift from the heart of Louise  and  Alan to your heart.  Listen.  Listen deeply and focus on what really matters.

Friday, 3 March 2017

Speaking Belfast April 11th Compassionate Care Day Conference - Register Here



Tuesday 11th April 2017

Crowne Plaza Hotel [formerly The Ramada]
117 Milltown Road, Shaws Bridge, Belfast, BT8 7XP

Registration   9.00am
Commencing 9.30am – 4.30pm

Keynote Speakers:

David Sheard, Chief Executive, Dementia Care Matters

Tommy Whitelaw, Carer and Dementia Campaigner

Dr Denise Tanner, Senior Lecturer in Social Work, Birmingham University

Places are limited, to avoid disappointment please book as soon as possible

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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Advice From a Patient

Advice From a Patient

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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The NHS WM Leadership Awards A poem for my Mum by Dreadlock Alien


On Tuesday February 28th 2017 I had the Great Honour to give the Keynote Address at the 
NHS West Midlands Leadership Academy Recognition Awards 
with Great thanks to Suzanne Harris Director of the Wm Academy and all the team for the kind invite 

The event was truly inspiring and so wonderful to hear of the dedication, passion and stories from all the nominees and winners

I was so very humbled to have had  the opportunity to attend and speak and I am so-very honoured from my heart for the standing ovation after my talk 

The event was hosted wonderfully and so beautifully by ' Dreadlock  Alien ' from the West Midlands who is a wandering wordsmith and poet, who brought together the story of the people and day 

As left the stage after my talk he stood up to introduce the next award and read out a poem he had written about my talk as I was speaking.

A poem that captured so many of the things I was trying to say.

So thank you for a wonderful day, kindness, inspiration and for the wonderful gift of a poem that this son will treasure forever 

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

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 ...