Friday, 17 February 2017

Thursday Speaking RCN Greater Glasgow Branch Development day Queen Elizabeth University Hospital


With great thanks to Greg Usrey, Health Improvement Lead (Mental Health)
Steward, Royal College of Nursing & Secretary, RCN Greater Glasgow Branch and all for the kind invite to speak at the Development day at Glasgow Queen Elizabeth University Hospital on February 22nd 

I am so very hounred to be invited and look forward to listening ,learning ,speaking and meeting everyone on the day 



09:00 – 09:30     Registration

09:30 – 09:40     Welcome & Session Introduction
                                    Garry Campbell (Chair, RCN Greater Glasgow Branch)

09:40 – 10:30     Dementia
                                    Geraldine Marsh (Associate Chief Nurse, NHS GG&C)

10:30 – 10:30    Giving a carer’s perspective to Care
                                    Tommy Whitelaw (Dementia Ambassador)

11:30 – 12:30     Delirium
                                    Geraldine Marsh (Associate Chief Nurse, NHS GG&C)

12:30 – 13:30     LUNCH (remember to bring something!)

13:30 – 15:15    Legal and Ethical Perspectives to Care
                                    Andrew Strachan (Legislation Nurse Advisor)

15:15 – 15:30     Informal Evaluation & feedback
                                    Garry Campbell (Chair, RCN Greater Glasgow Branch) 

Thanks for reading my blog, You can now view my 8 short flims here!
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Thursday, 9 February 2017

Guest post - Kind in Mind - Gillian Clelland, about her wonderful mum Jean

Today`s guest blog comes from Gillian Clelland, about her wonderful mum Jean and her caring experiences.  Lets see what Gillian has to say…

When I decided to share the responsibility to care for my mum Jean, who is 85 and has Alzheimer’s with my brother George, I found it both frustrating and rewarding.  Sadly, over the last 10 years, mum has lost all memory of much of her life but happily she still seems contented when she sees our cheeky chops. In order to deal with the more difficult times I like to focus on the good experiences as they restock my resilience pockets and inject a dose of positivity. Below I’ll share 5 – I call them ‘kind in mind’ actions that work for me.

1 Remember emotions remain intact 

Mum has lost track of all things logical but she responds quite normally to emotions! One day when I was quite overwhelmed with her sun downing behaviour I just burst into tears of despair both for her on the evil aspects of the illness and for me at a loss with how to cope! Mum saw me greetin, she immediately dropped out of her tangled thoughts, came and cuddled me and asked what’s wrong? She tried to console me, stroked my hair and even asked ‘where’s your mammy’ with a child like view that mammies fix things! Her actions wrestled me from my sadness and encouraged me to be positive again and I keep this experience front of mind.

2 Playing Games

We play a lot of games.  Balloons is easily the best.  It’s a guaranteed distraction technique.  So are colouring books and dominos, tho’ it is quite humbling to be gubbed by an 85 year old with such significant cognitive impairment.  Jigsaws also work, I’ve gradually been buying younger and younger age groups with extra large pieces so that she can still do most of it by herself! Ravensburger puzzles, aged 5 or 6 are best.  Mum will entertain minions, kittens and puppies but says princesses, action heroes and telly tubbies are for the weans!

Remembering to play is really important, I even tried a pillow the fight the other day when I asked mum to help me change the bed. With a little trepidation I dunted her gently with a big soft cloud, not at all sure of how she would react, but she laughed and giggled more than I had seen her laugh in years as she quite lamely tried to fight back!  It just melted my heart with happiness to know that she, occasionally, still can share funny moments and give herself a belly rumbling laugh at the same time.

3 Keep cuddling 

Just like toddlers, it seems to me that since mum can no longer understand or communicate much, hugs or even simply holding hands is the language of choice. Mum sometimes doesn’t return my cuddle, maybe she’s not sure who she’s hugging at first, but if I squeeze long enough and tight enough then love and smiles usually break through!

4 Choosing kind words

“OH DEAR!”   Whatever way you say it, ‘oh dear’ sounds sad!

“OOPS” on the other hand has a slightly surprising mischievous tone.

I try to remember to say ‘oops’ rather than ‘oh dear’ and give my brain a jolt to think positively about the situation I find myself in! It also implies accident rather than fault. Handy when accidents are often caused by someone who can’t help it!

5 Keep smiling

If all else fails sometimes I get serious. I look straight at mum and exclaim… “Mum will you do me a favour?” Usually this gets her attention and she looks at me confused. I say with a grin… “will you give me a big SMILE today?” So far it still works! We get a fleeting connection and share a silly moment in our crazy universe!

A friend once told me that “the word kindness originally meant being kin, or kindred, or of the same kind. And since we are all humankind, we should remember to be kinder to one another. The alternative is to be unkind, eg failing to connect or even alienating someone.”

Now there are eejits in the world that could do with a stern word, but when it comes to supporting a person bearing the burden of dementia, I try to be ‘kind in mind’ !  Carers need to be kind to themselves too.  It true that you do give up a lot of yourself to care for someone else but I have found that by cherishing the little magic moments, it gives me strength to keep going. There’s a quote by American writer, Joseph Campbell that sums this up…

“Find a place in life where there is joy and the joy with burn out the pain”

This is my mum, Jean, smiling!


Wednesday, 8 February 2017

Dementia Carer Voices - February Newsletter is Now Available

ALLIANCE Annual Report – Showcasing DCV in top ten of ten years
The ALLIANCE has published its interactive annual report for 2016, which highlights some of the organisation’s key activities over the course of the tenth anniversary year.
Dementia Carer Voices are delighted to feature 8th in the Power of 10 – Top Ten Achievements, showcasing the You Can Make a Difference Pledge Campaign.
If you would like to receive a hard copy of the report, please contact call 0141 404 0231

Reaching 12,000 pledges
2017 has kicked off to a great start with us reaching our 12,000 pledge milestone, with 252 of them made in January alone, reaching over 65,000 people in person at the seminars.
Thanks to every one of you who have made a pledge and for your continued support. Do keep us up-to-date on how you are getting on with fulfilling your pledge.
If you would like to contact us or make a pledge you can by emailing or tweet us at @DementiaCarerVo

Dementia Post Diagnostic Support: NHS Board Performance 2014-15
On Tuesday 24 January, the Scottish Government published Dementia Post Diagnostic Support: NHS Board Performance 2014-15.

Pharmacy & Biomedical Sciences Students @ University of Strathclyde pledge
Dementia Carer Voices were invited to speak to 3rd year pharmacy students on Monday 9 January, as part of their consolidation week. Project Engagement Lead, Tommy was joined by his colleague, Graeme Morrison ( @ALLIANCEGraeme ), Prescription for Excellence Inclusion Officer, to talk about the importance of seeing the person behind the condition and focusing on what matters to people. Pharmacists are very accessible healthcare professionals and have a growing role in supporting people with long term conditions, so it was important to emphasise the difference that these future pharmacists could make to people’s lives.

Learning and Improvement Network for Specialist Dementia Units Launch Events
ALLIANCE Director, Irene Oldfather and Project Engagement Lead, Tommy Whitelaw attended the Programme Learning and Improvement Network for Specialist Dementia Units launch events in Glasgow and Edinburgh in January 2017. Both Irene and Tommy are on the ‘Focus on Dementia’ National Advisory Group, as the project is one of the key partners for working across 5 specialist dementia units and 2 acute areas in Scotland. The first meeting was held on Wednesday 1 February, looking at the feedback from the learning events and future ideas and taking the partnership forward.

Future DCV events
Keep up-to-date with events DCV are attending over the next month. To find out more, see our “Get Involved” page over on our blog.

Our GP
“Over the past months, the ALLIANCE have been working with people and professionals on ‘Our GP’, a pioneering Scottish Government funded project that aims to ‘co-design’ future digital GP services. This has led to the creation of three innovative citizen-led ideas for new digital GP services, described in a brief explainer video.
We are encouraging members of the public and healthcare professionals to now get involved online!  Individuals can view quick demos of these three ideas for new services on our website, then give us their views through a short survey by the 16th of February. This will help identify the most valued ideas and redesign these innovative digital tools, which aim to improve people’s experience with GP practices.
Now is the time to have your say in designing Scotland’s future GP digital services  By taking part you could also win a great prize like an Apple Macbook Pro, smartwatch or a Fitbit.

SAVE THE DATE: Next Self Management Networking Event
The next Self Management Network Scotland event will be held on Thursday 27 April in Glasgow. More details on how to register will follow but for now please save the date!
After two years, and with 475 members, we think it’s time to have a look at how we enable effective communication within the network and how you can share learning with one another.
We also want to think about “so what?” With all the self management knowledge gathered within the network, let’s think together about how we can use that knowledge to make change happen.
We are working on the agenda at the moment but are happy to hear your ideas on what can help us answer the key questions this event will address:
  1. How do we effectively share knowledge within the Self Management Network Scotland?
  2. How do we use this knowledge to make change happen?
Look out for more information soon. If you have any questions or would like to share your ideas, please contact

Thanks for reading my blog, You can now view my 8 short flims here!
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Monday, 6 February 2017

Thank you for the great care over the last 6 weeks

Thank you for the great care over the last 6 weeks

As a campaigner at heart I have always tried to celebrate the good stuff along with asking questions of things that might not be so good, for me balance is of the greatest importance.

In between Christmas and New Year, I took quite unwell.

 On calling my GP I was given an appointment on the same morning, at my appointment my GP was quite concerned and called an ambulance to have further checks and I was seen too and allowed home later that evening

Since then my GP and practise Nurses have been brilliant with weekly conversations,tests and keeping me at the heart of all conversations and arraigning further hospital appointments and tests over the next few weeks.

I must say at this point that anything serious has been ruled out although we are still tracking some small concerns.

So thank you to my GP,the practice  nurses and my local hospital for great care,conversations and kindness and to my CEO and colleagues for looking after me 

I feel very cared for and at the heart of all discussions and decisions, for me this is what great  care feels like 

Thank you

Thanks for reading my blog, You can now view my 8 short flims here!
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Wednesday, 1 February 2017

#OurGP is now online! help design future GP digital services.

“Over the past months, Health and Social Care Alliance Scotland (Chair of UK Group) have been working with people and professionals on ‘Our GP’, a pioneering Scottish Government funded project that aims to ‘co-design’ future digital GP services. 

This has led to the creation of three innovative citizen-led ideas for new digital GP services, described in a brief explainer video (click below).

We are encouraging members of the public and healthcare professionals to now get involved online!  Individuals can view quick demos of these three ideas for new services on our website, then give us their views through a short survey by the 16th of February. T

his will help identify the most valued ideas and redesign these innovative digital tools, which aim to improve people’s experience with GP practices. 

Hurry up and please have your say in designing Scotland’s future GP digital services!  You could also win a great prize like an Apple MacBook Pro, smartwatch or a Fitbit.”


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 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!
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 ...