Are you a carer?

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

If you're a carer and you'd like to send a letter in, you can post it to Tommy on Tour, 39 crosslee street glasgow g521sl. You can also email it to

Saturday, 20 December 2014

“I’m sorry but I think you are dying.” Guest Blog via Ken Donaldson Associate Medical Director NHSD&G


This months Guest blog is from a very good friend Ken Donaldson Consultant Nephrologist and Associate Medical Director at NHS Dumfries and Galloway. @kendonaldson


To any clinician these are hard words to say. For patients they may be harder to hear however for some they are a relief as they have come to terms with the fact that they are dying. Sadly, because we perceive the impact of saying them, we tend to avoid them and focus on what we, the clinical body, do best - diagnose illness, organise tests and formulate management plans. Even though it may be obvious to all that an individual is facing the end of their life we often we cling to the hope offered by modern medicine and its miracles.

I was struck by a story a colleague told me a few years ago about a patient he had been referred. My colleague is a kidney doctor like me and had been asked to see an 85 year old gentleman, who I shall call William, on another ward in our hospital. William had been in hospital for 2 weeks. He had been admitted with lethargy, fatigue, poor appetite and weight loss. Initial blood tests had revealed a kidney problem and he had been thoroughly investigated by the admitting team to establish why. In that 2 week period he had had; a gastroscopy (flexible tube inserted into his stomach), an ultrasound of his abdomen followed by a CT scan of the same area. On a separate day he had a CT of his head. He had had blood tests done every day. The team then came to the conclusion that his kidney failure was irreversible and the cause of his symptoms and decided to call my friend to initiate kidney dialysis. 

William had a number of medical problems. He had heart disease and had undergone a quadruple bypass operation 10 years prior. He had heart failure and poor blood supply to his legs. More significantly he had dementia and struggled to maintain a simple conversation. My friend established that he lived with his wife so found her number and gave her a call. Williams wife had a number of health problems herself and was housebound. When my friend called her this was the first contact she had had since William had been admitted. She had phoned herself a few times but had been informed William was comfortable and would be home soon. Once my friend had outlined the situation - end stage kidney disease, multiple co-morbidities, possible dialysis with all the difficulties associated with that treatment - Williams Wife interjected. He wouldnt want any of this. We spoke about this kind of thing some years ago and both agreed that we didnt want to be in hospital and attached to machines. I know he would just want to be at home.” After hanging up my friend contacted our Specialist Palliative Care team for help, support and advice. 

This scenario brings a number of questions to mind. How could the team caring for him really understand what his needs were, who he was and what he might want when he had a clear diagnosis of dementia and they had not sought information from his next of kin - his wife? Had no one considered how his wife may be feeling? She was isolated and had practically no contact with the hospital. She admitted to my friend that she had not pushed for more information because she new everyone was very busy and doing their best. Had it not crossed anyone’s mind that this elderly gentleman may be at the end of his life? He was seen daily by doctors nurses and other specialists, surely one of them must have considered this
In Atul Gawandes recent book, Being Mortal, he touches on many aspects of end of life care that would be relevant to Williams case. In particular he stresses the importance of palliative care input at an early juncture. He cites a landmark study from Massachusetts General Hospital where patients with advanced lung cancer were randomised to either full treatment with chemotherapy or full treatment AND referral to palliative care. The group with palliative care input had discussions about their goals and wishes should they deteriorate. This group elected to stop chemotherapy sooner, entered a hospice earlier and had less suffering at the end of their life. What is more striking is that they also lived 25% longer than the group with no palliative care input. In Gawandes words  our decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. If end-of-life discussion were a drug, the FDA would approve it.

It is often easier to start end of life discussions when the diagnosis is one of advanced, untreatable cancer or of another similarly terminal disease. Sadly we have an increasing number of patients like William who are slowly and gradually approaching death without a single obvious cause. They have often realised this truth long before the medical teams caring for them. They are usually reluctant to raise the topic as it can sound defeatist, like they are giving up. It’s up to those medical teams to gently introduce the topic, include the palliative care teams and ensure we are asking the right questions. It doesn’t mean that we dont treat, we just treat with a common understanding of what we are likely to achieve and with realistic goals. 

William was seen by the palliative care team who arranged for him to get home the next day. He died 11 days later, in his own bed, comfortable and at peace with his wife beside him. This is a good death’ but it niggles me that he neednt have been put through quite so much in what turned out to be the last few weeks of his life.                                  


Ken Donaldson is a Consultant Nephrologist and Associate Medical Director at NHS Dumfries and Galloway.


Further information and recourses- Scottish Government recent publications 

via Craig white (Divisional Clinical Lead, Quality Unit, Scottish Government ) @craigwhitephd 

Caring for people in the last days hours  of life 

Friday, 19 December 2014

Seasons Greetings and Support information over the Festive Period

The Dementia Carer Voices Team would like to wish each and every one of you a lovely festive season and all the very best of wishes for the new year. Thank you so much for your support throughout 2014, it has been an incredible year and we have met some amazing people and gathered so many inspiring pledges – thank you to each and every one of you for making this year so special and for making a difference.
 We also know that Christmas can be a difficult time, but no one has to be alone. If you need someone to talk to, or a bit more information, there are places which will be open over the festive season which we have included some information on below.
Thank you again for such an incredible year – we can’t wait to see what 2015 will bring! So from Tommy Irene, , Laura and Sarah, Merry Christmas and a Happy New Year.
new year

It’s ok to ask for help

Alzheimer Scotland Helpline

The 24 hour Dementia Helpline is a freephone Scottish service for people with dementia, carers, relatives, professionals, students and anyone concerned about dementia. It is open 24 hours a day, call them anytime on 0808 808 3000 or email them at


The Silver Line is a a free confidential helpline providing information, friendship and advice to older people, open 24 hours a day, every day of the year.

You can call them anytime on: 0800 4 70 80 90

The Samaritans

The Samaritans are open 24 hours a day, 365 days a year. You can call them on 08457 90 90 90, or email

Carers UK Adviceline

The Carers UK Adviceline is an expert telephone and email advice and support service. They will be open as usual until Tuesday 23 December 2014. You can call them on 0808 808 7777 or email them at
From 24 December 2014 to 2 January 2015 (except Bank Holidays) an information signposting service will be available. However, expert advisers will not be available.
During this time callers will be able to order a Carers Rights Guide and there will be a limited number of appointments available for urgent cases to be contacted on Monday 5 January 2015.
Opening hours are as follows:
  • Wednesday 24 December: 10-4
  • Thursday 25 December: Closed
  • Friday 26 December: Closed
  • Saturday 27 December: Closed
  • Sunday 28 December: Closed
  • Monday 29 December: 10-4
  • Tuesday 30 December: 10-4
  • Wednesday 31 December: 10-4
  • Thursday 1 January: Closed
  • Friday 2 January: 10-4
  • Saturday 3 January: Closed
  • Sunday 4 January: Closed
From Monday 5 January 2014 the Adviceline will be open Monday to Friday, 10am – 4pm as usual.

Carers UK Forum

The Carers UK online forum is available to Carers UK members 24 hours a day, 365 days a year. If you’re not a member you can join online for free and your user name and password will be automatically emailed to you. To get started join Carers UK as a member – you can make a donation when you join or sign up as a free member.

Social services

If your normal office is closed and you need urgent help, then you need to find the “emergency duty team”. Numbers are sometimes printed in local newspapers or in the telephone book. An easy way is search online is to use google and type “emergency duty team” and the name of your local council.
In Scotland you can contact Care Information Scotland who can provide information and contacts for social care services at 08456 001 001 (Mon-Sun 8am-10pm).
In Northern Ireland Emergency social work contacts can be found by going to and finding your own Trust website.

Medical help

If you have a medical emergency, a critical or life threatening problem call 999. Examples of an emergency include unconsciousness, difficulty in breathing, suspected heart attack or stroke, heavy blood loss, serious injury or severe burns.
If your health problem is less serious you can call the NHS on 111, free from any phone.
Find out more:
Scotland – NHS 24
NHS 24 is a 24 hour telephone health advice and information service for people in Scotland.
T: 111
Online health information is also available at NHS Inform.
Wales – NHS Direct Wales
NHS Direct Wales (Galw Iechyd Cymru) is the NHS Direct service for people in Wales. It provides information in English and Welsh.
T: 0845 46 47
Northern Ireland
There is no equivalent service in Northern Ireland. You should ring your own doctors surgery, where you will find a message with contact details for the out of hours service to call. This website contains useful information about Health and Social care:
Thanks for reading my blog, You can now view my 8 short flims here!
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1/2 Million Thank Yous For Reading my Blog - Films - Tour ,and Pledges


A massive thank you from my heart. Over the last year, in fact the last years since I started a campaign from my bedroom whilst caring for my beautiful mum I have met the most amazing, kind and caring people, in person via my blog, by letter, email and Twitter to name a few.

I started a campaign as Mum and I were painfully lonely and struggling to cope or understand what was happening within, around and beside us.

I want to thank you all for the great kindness, encouragement, guidance and support we have had since the campaign started with my walk to collect life stories, then on to the Dementia Carer Voices project to this present day.

Over the the last year I have given around 180 talks and well over 300 since the campaign started. I have been so lucky to have had the opportunity to make many films and try my best to raise awareness, always as a son, and trying to keep the promise I made my mum.

I am so overwhelmed that we have now reached what I believe is over half a million views, reads, pledges on my blog, films and tour, speaking to well over 10,000 people on my tour this year alone.


Thank you for the kindness for the support and for the great encouragement.

Thank you from my heart, I am so glad to know you and you have made such a difference to my lost and lonely heart.




Thursday, 18 December 2014

Meet the Inspiring 2765 People who have made a personal pledge to Make A Difference 2014


2014 has been the most amazing year. I have had the great privilege to meet so many amazing, caring, inspiring people IN PERSON on my tour across the country on twitter via our Dementia Carer voices Blog and my own TommyOnTour blog.

I have been overwhelmed by the kindness of people and have had many emotional journeys home late at night from talks thinking back to all that happened each day; the people I have met,the pledges that have been made , the stories I have heard and the great initiatives so many people have shared.

There are far too many people to mention in person - this blog piece might never end if I tried!
For me caring is truly all about people and relationships - it’s always people who make the biggest difference of all. I have met so many amazing people and witnessed the greatest relationships of care over the last year.

Thank you for bringing a smile to my heart over the last 12 months, thank you for making such a difference to my life BUT more importantly thank you for the amazing pledges to make a difference for others. 

Thank you from my heart and  from my amazing team mates Irene, Laura and Sarah.

You can view our NEW PLEDGE  FILM launched for 2014 with the staff of NHSAAA, First Minister Nicola Sturgeon CEO NHS Scotland Paul Gray and Chief Nursing Officer Fiona McQueen    here. 
                                            Nicola Film Still 2
                               You Can Make A Difference 

                                                     you can follow the team on twitter 

                        Dementia Carer Voices pledge background 

Dementia Carer Voices has now gathered 2765  pledges as part of the “You Can Make a Difference” campaign. The campaign encourages people to listen to the experiences of people who have cared for a loved one with dementia and to think how they can make a positive difference in people’s lives. The team are delighted to have gotten such a strong response, and would like to take this opportunity to reflect on our journey up until now and how we have gotten to this point.

A fundamental aspect of the campaign has been about involvement. Throughout the 180 talk tour, we have engaged with several thousand health and social care professionals, students, MSPs and members of the public, and have noticed a distinct increase in the number of pledges we have received when people are encouraged and supported to do so by colleagues and friends. We would therefore like to ask you to share this campaign, to encourage people you know to get involved and make a pledge to make a difference in the lives of people who have dementia, their families and carers. Through our own dedicated blog sitetwitter account and website, the campaign is easily shared, and links people to a range of information.

Pledges can be submitted via emailtwitter or on the blog site, and are also collected at every talk. We would very much appreciate it if you would promote this campaign; the talks and our films and encourage people to reflect on what they can do and how they can make a difference.

                The Amazing People and Pledges 2014 

We began the campaign by asking “What does caring mean to you?”
19.02.14 NHS Fife
(08 -10).04.14 NHS Dumfries & Galloway 
3/4.06.14 NHS Conference
27.06.14 BCDA Birmingham

01.09.14  Teesside University
13.10.14 More Pledges
03.11.14 Online pledges
07.11.14 Burton Hospital
13.11.14  Pledges of the week
24.11.14 The Retreat York

Thanks for reading my blog, You can now view my 8 short films here!  

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