Friday, 26 June 2015

Guest Post - Remembering The Love Story - Deborah Hamilton, Community Links Practitioner

Todays guest post comes from Deborah Hamilton, Community Links Practitioner for Health and Social Care Alliance Scotland based at the Green Practice in Govan Health Centre.  You can follow Deborah on Twitter at @debsmakeslinks 

Let see what she has to say….

This reflection is about love and kindness and dedicated to Tommy and his mum Joan.

Not long after I started in practice I got my first referral for a family struggling with the caring role of their fathers fairly advanced dementia. Working with carers and indeed condition of dementia, was new to me so I had found Tommy’s input during our Links worker induction both moving and really helpful in preparing me for the approach required. Little did I know just how helpful it would be.

One of the GP partners referred a lady in her 40’s who was living and caring for her elderly parents, her Mother was now house bound due to a number of long term conditions and her once very active father had developed dementia around six years prior. The family had had previous bad experiences with staff coming into their home following referrals by their GP and this had led to a mistrust of any agency other than their GP team, who they had worked with for many years.  She called them to explain my role and sure enough due to their GP endorsement and my being considered just another member of the team, the family agreed for me to visit them at home.

It was a very complex situation for the family with a history of real difficulties and as Dads dementia had developed they had been become even more isolated and fearful he would be removed to a care home, which was not his wish. Unfortunately there could be times when he would become verbally aggressive and he had previously attempted to assault an outside agency when he felt threatened. It was understandable that his family were reluctant to work with services and I had to visit every week for a number of weeks building trust and getting to know them and their experiences.

I had of course come with a carers’ hat on and so much of the initial discussions had been with Mum and daughter who were very much in need of support and onwards referrals. We spent time discussing and preparing them for the range of statutory and voluntary services available to them but I became keen to speak directly with Dad. During visits he would sometimes stay in the back room and I began to get the sense he did not feel valued enough to be contributing to the discussions. On my third or fourth visit he came in when he heard discussions about home care arrangements and respite options. He was agitated and his wife and daughter were worried he might lash out. I suddenly remembered Joan, not just Tommy the carer, but Joan the lady living with Dementia. The lady whose love story had brought me to tears, the lady who still deserved to have her favourite shampoo used, her dignity maintained and her contribution to her community known. My attention turned to this scared and forgotten man in front of me and I knew instantly that kindness was, as ever, the order of the day. I think he felt this and after some important eye contact and addressing him directly, he asked if he could meet me on his own in the kitchen. It became apparent that during all his contact with services over the years, his medication reviews etc. he had not been met on his own and asked ‘what matters to you?’ He might have had dementia but he still had rights and thoughts on how these might be met. He told me he was too embarrassed to allow his daughter to wash him and that his wife was becoming too frail so he had remained unwashed for a long time not having had the opportunity to tell someone this sensitive information. I held his hand.  He wanted to maintain his dignity and that of his families but was sacred of people now coming into his home after so many years in isolation. He also told me that he had once enjoyed long walks but could now only go out with his daughter after he had lost his way home shortly after his diagnosis. His daughter is a lovely chatty women and he wanted to walk in silence, as he had done to maintain his wellbeing through years of marriage and raising a large family.

Using the trust of the GP team and the Links approach over the coming months the family became engaged with Carers services. We arranged for a respite carer to take him on long walks but in the silence he preferred whilst his wife and daughter had some time to themselves.

Within a few months he took ill and was hospitalised before being moved to a specialist care home for people with dementia. It was not quite the outcome we had all hoped for but in the end, in this situation, it had become the best option. Perhaps if he’d had a link worker 6 years ago when he was first diagnosed things might have been different. I’m very glad that I got to know this fine gentleman and what most matters to him and I thank Tommy and Joan for their love story and how it kept me connected to what matters most.

Thursday, 18 June 2015

Friday - Speaking Inshes Church Inverness Mid Day - All Welcome

                                                DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

With great thanks to Margaret Morrison for the kind invite to speak to staff and families from Cameron House Inverness at Inshes Church June 26th at Mid Day ( Cameron  House is a purpose-built residential service) 

This is event is open to all 

The event will be for staff along with some members of the Relative Support Group and open if anyone would like to attend 
On the day i will be have a tour of the services,meet with staff and families along with a make a difference talk followed by a Q&A session 
Thank you to Margaret and all the team for the kind invite 

Thanks for reading my blog, You can now view my 8 short flims here!
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Talking Integration and Transformation at the NHS Conference - pop by and have a chat !


With Great Thanks to NHS Scotland and SG for the kind invite to host one of the  ‘On the Couch’ sessions at Integration Hub 24 June between 12.40 – 13.30. And participate in breakout sessions both days 

 “What does integration mean for people living with dementia?” I am very honored to be participating in  sessions  both days at the NHS Scotland annual conference #NHSScot15 

The  sessions provides delegates with an opportunity to learn directly from people living with dementia and from carers about what is important to them in maintaining a good quality of life at home;and how integration can help improve  experience of care and support, Delegates will hear about the latest developments around person-centred indicators of quality of care for people with dementia and their carers. This will be followed by facilitated group discussions in which past and current experiences of people with dementia and carers of people with dementia will be shared,
(Our Director Irene Oldfather will be chairing a session with Jim Pearson from Alzheimer Scotland called)
Myself and  fellow carers will be encouraged to share  expectations and hopes about the benefits integration will bring in the quality of home-based care and support. Discussions will be captured and learning from the group sessions can help inform future commissioning, service design and service delivery decisions. 

I  will also be ‘on the couch’ at the conference during lunchtime at the event on 24 June between 12.40 – 13.30.   talking about my  own experiences of caring for my  mum Joan,

 sharing information about the project and what people living with dementia and their families and carers have told us. I  will also be taking questions (and pledges!) so if you’re heading to the conference, please do come along to the couch for a chat about the love stories of caring and the Make a Difference pledge campaign. The couch area will be at the Integration Hub – you’ll find it here:



Thanks for reading my blog, You can now view my 8 short flims here!
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Tuesday, 16 June 2015

Dementia Carer Voices Project JUNE newsletter Is Available To Read Here

Welcome to the latest edition of the Dementia Carer Voices Project's newsletter, which will keep you up to date with our latest activity.
This month's edition includes an overview of what we've been doing over Carers Week and Dementia Awareness Week, information on the launch of a new human rights resource which features the project, and some great guest contributions to our Dementia Carer Voices blog site.
Read: Dementia Carer Voices June Newsletter


Thanks for reading my blog, You can now view my 8 short flims here!
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Friday, 12 June 2015

Dementia Carer Voices - Get Involved - Info

Thank you very much for your interest in getting involved with the Dementia Carer Voices project. There are a number of ways you can do so, detailed below.

Project Information Booklet  1

You can now learn more about the project and download the full 6 page booklet here. 

Make a pledge   pledge

The team have been encouraging people to make a pledge; a promise to make a difference in the lives of people with dementia, their families and their carers. Please email your pledge to

Tweet us!  twitter

Follow us on twitter and tell us your thoughts @DementiaCarerVo

Follow the team:





Newsletter images

The April/May Dementia Carer Voices Newsletter is now out!

If you would like to receive our monthly newsletter, please subscribe to our mailing list by sending us an email here.

YouTube  untitled

Take a look at the Dementia Carer Voices YouTube channel and keep up to date with the latest films and interviews.

Events  calendar

Please find attached a list of upcoming talks for this year. If you would like to attend one of the talks, please get in touch using the contact form below.


June 2015

  • 01.06.15 Speaking Napier house, Glenrothes
  • 03.06.15  Speaking HW Essex – Chelmsford
  • 04.06.15  Speaking Broomfield Hospital, Essex
  • 05.06.15 Live web cast for Scottish Ambulance Service
  • 08.06.15  Speaking Future-Focused Finance (morning)
  • 08.06.15  Live radio guest Jeremy Vine show carers week launch (Mid-Day)
  • 09.06.15  3 talks Nottingham University Hospitals
  • 10.06.15  Speaking Wakefield – Shaping the future of Dementia Care
  • 17.06.15  Speaking at Edinburgh Royal Infirmary
  • 18.06.15  Scottish Ambulance Academy
  • 22.06.15  Scottish Ambulance Academy
  • 23.06.15  Speaking  NHS Scotland Conference Workshop   12:30-13.30
  • 24.06.15  Speaking NHS Scotland Conference Workshop 11:30-.12.30
  • 26.06.15  Speaking Cameron House, Inverness
  • 25.06.15  ALLAINCE Scotland Conference
  • 29.06.15  Speaking GHA Housing Support Workers

July 2015

  • 07.07.15  Social Workers Barrhead Health and Care Centre
  • 09.07.15  Speaking Newcastle Transforming Participation Forum
  • 17th,24th,30th,31st Darlington hospital
  • 15.06.15  Speaking at I Care Conference, University of Bedfordshire, Luton
  • 19.06.15  Speaking at Nursing Conference, Oxleas
  • 28.06.15 Nursing Workshop, Hatfield

August 2015

  • 03.08.15 Darlington Hospital
  • 07.08.15 Long Term Conditions – Public Health NHSGG



Have you attended one of the Make a Difference talks? Let us know what you think! We’ve gathered some of our latest feedback but would love to hear your thoughts on the project, the campaign or the talks. Please let us know by using the contact form below.



Get in Touch

Monday Speaking I Care Conference University of Bedfordshire


With great thanks to Marcia Ongunji head of nursing and midwifery the university of Bedfordshire for the kind invite to speak at the I Care Conference next week 

I am very honored to be invited and look forward to attending ,listening,learning and speaking about make a difference 


Wednesday, 10 June 2015

The Power of Attorney Campaign - Start The Conversation


This weeks guest post come from Jill Carson, Head of Older Peoples Services, Great Glasgow and Clyde CHP speaking about the Power of Attorney (POA) campaign.  You can follow POA on Twitter at @StartTalkingPoA
“Here at we are working hard to raise awareness about the importance of putting your Power of Attorney in place.  These days, it’s something we tell people about as soon as they get a diagnosis of dementia.  But it’s also something we should all do, as it means that in the future, if you become unwell or have an accident and are unable to make decisions for yourself, there is someone you trust who can do that for you.  Many people think that their next of kin can do this – but that is not the case: no-one has the right to make decisions for you unless you have appointed them officially.
If you don’t put a Power of Attorney in place, a court of law is required to appoint someone – and it’s very stressful for anyone to have to go through legal processes, which is what your relatives will have to do if you haven’t already registered an Attorney with the Office of the Public Guardian (Scotland).
Appointing an Attorney is especially important if you have to go into hospital or have healthcare needs as a consequence of illness or disease (such as dementia) and become unable to make your own decisions about your treatment.  Your Attorney can make sure that your wishes are carried out regarding your treatment, and if necessary can make crucial decisions such as where you should live when you are well enough to leave hospital.
Every day in our hospitals there are people who are medically fit and no longer require hospital care, but who are unable to be discharged because they cannot make decisions for themselves and did not appoint an Attorney.  It usually takes months for the legal processes required to appoint someone – that’s months that someone has to live in a hospital without needing medical treatment.  Our NHS and social care services are committed to supporting people to live well in their own homes or in a homely setting as close to home as possible, and that’s what people want too.  Putting a Power of Attorney in place is a crucial step to facilitate this.”

Dementia Carer Voices, Tommy Whitelaw in an honest and frank interview with Power of Attorney.  Tommy gives an insight to the importance of planning and the heartache it caused him and his mum.  They were too late for Power of Attorney and this made things much worse in their lives.  You can view the film from that interview here

Thank you Team Dementia Carer Voices
Thanks for reading my blog, You can now view my 8 short flims here!
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Tuesday, 9 June 2015

Carers Week #CarersWeek


This week (8th – 14th June) marks Carers Week 2015, which this year focuses on building Carer Friendly Communities. The Health and Social Care Alliance Scotland’s (the ALLIANCE) Dementia Carer Voices project works to promote the views and experiences of carers, so that communities, policies and services become more carer friendly. The project recently launched a report on the Caring Experience which was produced after 160 carers shared their experiences of caring for a loved one living with dementia. The report highlights the issues of loneliness and isolation, the need for greater information and support, and shares advice from carers to health and social care professionals and fellow carers to make the caring journey more manageable.

The project has undertaken an extensive engagement programme to reach out to people and encourage them to make a positive difference in the lives of people living with dementia, their families and carers. Engaging with an estimated 25,000 people in the past 2 years, the project has taken an empowering message to people and communities across the country: You Can Make a Difference. The Make a Difference campaign provides people with the opportunity to reflect on the experiences of carers, including those of Project Engagement Lead Tommy Whitelaw who cared for his late mum Joan, and to make their own commitment to make a positive change. The team has now gathered over 4,000 pledges from people throughout the UK promising to make a difference in the lives of people with dementia, their families and carers.

With carer support services out for tender, and the Carers Rights Bill going through the Scottish Parliament, there has never been a more important time to promote and protect the rights of carers, and to listen to and act on their views. The Make a Difference campaign recognises the role that each individual can play in ensuring that carers are appreciated and acknowledged as full and equal citizens, who have undertaken what can be an incredibly demanding role. Carers Week provides the perfect opportunity for people to make a pledge to make a positive difference in the lives of people with dementia and their carers, and to recognise the tireless efforts of unpaid carers throughout the country.

Tommy Whitelaw, Dementia Carer Voices Project Engagement Lead, said:
“Carers tell us that a little bit of time, listening and understanding can make an unimaginable difference during what can be a very difficult and lonely journey. The pledges that we have received have been truly inspiring, and we’re looking forward to working with people and seeing those pledges fulfilled.”

Irene Oldfather, Director, the ALLIANCE said:
“This work reaches out and touches the hearts of many people, not least Health and Social Care students and professionals. These interactions are an ideal opportunity for staff to pause and reflect on what is really important to the people in their care.  Make a pledge, make a difference.”

The Caring Experience report, the full collection of pledges, and further information on the campaign can be accessed online at, where you can submit your own pledge to make a difference.

To get in touch, please call the project team on 0141 404 0233 or email

Friday, 5 June 2015

Thank you to Jeremy Vine and Radio 2


With great thanks to Jeremy Vine, Phil Jones,Liza Greig ,Priha Shah and all the Jeremy Vine production team for the kind invite to be a live guest on the show for carers carers week on Monday 

 I was  invited to speak about caring for my wonderful mum the letters people send us 

Over the week you will also hear  from many carers and families including some people who have contacted us and I have met on my tour along the way 

Big thanks also to Jen kenward 

This week marks Carers Week 2015 , and as one of the biggest weeks in the year for the Dementia Carer Voices Project,  the team have been around the country and on the airwaves in order to raise awareness of the caring experience and to make sure carers voices are heard. The team’s Project Engagement Lead Tommy Whitelaw featured as a guest on the Jeremy Vine Show on BBC Radio 2 on Monday to kick off Carers Week, as the first in a series of programmes which feature different carers sharing their experiences every day this week.


The show offered a fantastic platform to hear from carers themselves, including Tommy who spoke movingly and honestly about caring for his late mum, Joan. This struck a chord with many of the show’s 12 million listeners, who showed their support on social media, and indeed through calling in to the show. The show also featured clips from several carers who shared their journey in their own words, emphasising the emotional impact of caring and the need for more readily available support. Tommy took the opportunity to highlight ALISS  as a key tool for people to access supports and services in their area, encouraging carers to look after their own health and wellbeing. The show also took calls from listeners who were caring or had cared for a loved one to voice their opinions and emotions and provided an important insight into the difficulties carers can face in their vital but demanding role.

The ALLIANCE’s Dementia Carer Voices project works to ensure that the voices of carers are heard and influence policy and practice. To find out more about the project please visit  or get in touch with the project team at

To listen to the show, please visit


Thanks for reading my blog, You can now view my 8 short flims here!
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Monday, 1 June 2015

Speaking Oxleas NHS Foundation Trust Annual Conference June 19th


With great thanks to Natalie Warman Associate  Nurse Nurse Director Oxleas NHS Foundation Trust for the kind invite to speak at the trusts annual conference 
' Driving and Embedding Safety and Quality of Care ' on June 19th Charlton Athletic Football club 
I had the great privilege to meet Natalie at the FutureMH conference a few months back where Natalie  kindly invited me to speak 

A big thanks also to  Katie Bignell Oxleas NHS Foundation Trust for arranging and supporting me to get there 

Looking forward to attending,learning,meeting everyone and speaking 



Future-Focused Finance value makers add Pledges

Kicking of the first of the talks on this #Carerweek was at the Future-Focused Finance event.
Big thanks to Camilla Godfrey, Programme Co-ordinator at Future-Focused Finance for the invite to speak at the #valuemaker launch on Monday.
We were very honoured to be invited along and looking forward to more talks together later this year.
Thank you also to Gayle and Sam and all the wonderful kindness for so many of the team on twitter, you can follow the work they do or get involved via the #Valuemaker on twitter.
Please take some time to read the amazing pledges below.  You to can make a pledge by sending it to
Thank you
Team Dementia Carer Voices :)

I shall attend a cares forum to listen and better understand what is important to them and what I need to make sure we are building into the services we commission for cares and dementia in particular –Cathy Kennedy
I pledge to look into dementia care @Wye Valley Trust and what work we have been doing.  Look into becoming dementia friend and what this involves – Nicki Emmert
My pledge is to support their message that people with dementia are still people with a history and a story and deserve to be treated as such.  They didn’t choose dementia and deserve kindness and respect like anyone else – Michaela Davitt
I want to give more educating on dementia so people have a better understanding – Sian Jones
I pledge to become a dementia friend, been meaning to do it for ages, todays talk has reminded me – Maggie
My pledge is to use our training events to promote dementia friends, cares voice and get people to make a pledge – Ben Roberts
I pledge I will send the video link out to all members of the finance team at SRFT and try to cascade it trust wide – Mark Reeves
I pledge to use my experience as a carer to inform the decisions I make at work.  To speak out when it is needed and always remember the patient and family not see another number or process – Mark Songhurst
Don’t judge.  Understand and place myself in their shoes.  Help in whatever way I can to raise awareness and promote improvements to care and support services – Susan Kearsley
I pledge to raise awareness in NHS finance about dementia – Sam Sherrington
I pledge to consider and find out about their personal situation and needs in every interaction with or decisions about them – Jason Dean

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 ...