The lights are bright ,but I have nowhere to go

Hi 

I spend most of my days on trains,traveling to and back from talks and all of my nights at home alone 

It has been a very busy year with a total of 178 talks from January to December confirmed 

I think I am at talk 140 after today 

I arrived Glasgow Central just after 10pm this evening after attending and speaking at a wonderful patients stories event in Hatfield Hertfordshire this is quite a theme of late 

It's Friday night and the bright lights of Glasgow are shining and full with people moving between resteraunts and bars ,Glasgow certainly is a vibrant lively city at weekends 

I spent a big  part of my life touring before caring for mum and most nights working at concerts and going out afterwards every night felt like a Friday night back then 

For the last 7 years I have hardly been out when caring for mum for 5 years this was not an option or possible and sometimes what you don't do or see you do not miss 

 since mum passed away I have been putting all my efforts in to trying to keep the promise I made to mum and to those who send Their stories to try and make a difference as best I can 

Walking through town tonight to get the bus home watching people enjoying a Friday night with friends I realised no matter how bright those lights are I have nowhere to go ,my campaign  I feel and hope has grown but life has stood still 

I keep meeting so many amazing inspiring people and today was no different the people I met inspired me ,the problem is tonight is also no different  as I walk through the door to this dark and lonely house I call my home 

The lights tonight in town are left behind in many ways much like the life I used to know 

Tommy 

 

Today Speaking Hertfordshire Patient Stories Conference

Hi

With great thanks to Catherine Pelley Deputy Director of Nursing and Quality (Patient Experience) Hertfordshire and South Midlands Area Team for the kind invite to speak at the Hertfordshire Patient Stories Conference 26th September being held at the Fielder Centre Conference Centre

Catherine and I both follow each other  on twitter and I am very honored to be invited to attend and speak  

Looking forward to meeting Catherine ,all the team and all who attend

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

Time to Pledge to Make a Difference Guest Post from Alison Tait SPNA Committee

A few months back I had the great honour to speak at the SPNA annual conference  you can read more about the event and read the inspiring pledges we received on that day HERE 
Allison Tait  Scottish Practice Nurse Committee. NES General Practice Nurse Supervisor who iinvitedme to speak at the event has kindly sent a blog post looking back at the day and taking the pledges forward 
Thank You Allison for the kindness ,pledges and for your thoughts 
tommy 

Time to Pledge to Make a Difference

On the 15^th of May 2014 Tommy Whitelaw came to the Scottish Practice Nurse Conference.  The conference was well attended with General Practice Nurses coming from all over Scotland. Tommy was our first speaker on the day. For most of us working in General Practice this would be our first introduction to an exciting new project from the Health and Social Care Alliance. It is the Dementia Carer Voices project and calls upon Scotland’s Health and Social Care professionals to consider how they can assist people with dementia and their carers'. 

Many of us have been in nursing and in primary care for many years and Tommy had us reflecting on how we could make a difference. Tommy is an amazing man who told us of his mother Joan and their subsequent journey as dementia entered their lives. The feedback to the Practice Nurses who organised the conference included  “we should have put tissues on the table". He reminded us of why we came into nursing and how we could make a difference in the lives of those touched with dementia.

Tommy told us of his experience and how he and Joan attended the reception of his local practice to seek help and support whilst he felt he was drowning with the numerous and varied needs that they had. As she didn’t have an appointment he was effectively turned away and given leaflets to read. There wasn’t one of us in the room who didn’t think that our practices could have turned Tommy and his Mum away and we wondered how and if we could make a difference in any way.

We do have the ability to make a difference and we are well placed at the heart of General Practice to this - every one of us.

According to figures from the Information Services Division Scotland (ISD), practice nurse consultations increased to 7.6m in 2011/12, compared to 6.1m the previous year – and now account for 30% of all practice consultations. GPNs are at the very centre of General Practice and support the ethos of the RCGP campaign to 'Put Patients First'. It's known that patients value general practice very highly, and rank GPs as one of the most trusted of all professions. We have to ensure that we are all worthy of accolade by helping Tommy and making pledges to support him in his task to ensure Dementia Carer Voices are heard.

Dr Sam Tang new GP trainee and new receptionist Denise Crosby. 

 

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

Sometimes only a cuddle can make things better #ForMum #ForDad

Sitting at home tonight it gets dark so early and this house is feels so empty so often

My wee mum is on my mind so often firstly because I miss her  and my weekly awareness talks ,well mum is the heart and soul of them 

I was deep in thought earlier about so many things, this campaign is about dementia and I hope kindess and understanding because I was a lucky boy kindess and understanding where the make up of my life growing up .I was lucky boy to have such a mum and dad 

My dad now there was a good man ,hard working ,honest and true and just loved his Joan and Joan just loved him .that was a wonderful thing to witness and way to brought up 

And I miss them .I am a grown man but I still miss my mum and dad they also kept me right ,they understood my flaws ,they took time to understand the many mistakes I made in my own life and they always made it better ,when I had no clue how do that myself 

And I miss that I my dad's strength ,guidance and honesty in all situations and miss mums love ,care and kindness 

No matter how old you get there is nothing like a cuddle from mum and a reassuring arm to prop you up from dad 

If your read this tonight and your mum or dad are still here  just tell them you love them 

I would give anything to tell them both just one more time how much I loved them and lucky I was to be thier son 

For the love of mum for the love of dad 

                                        

                                                            Love story 

                                 

                                                                     

            

                            Vv  vviv

                                                                   

                                       

Thank you Nurse Rosalyn Hargreaves for making a difference ,the talk ,the pledges #inspiring

 

We are privileged to share this truly inspiring example of the power of one individual and the difference they can make. Tommy, Irene, Sarah and Laura would like to say a massive thank you to Roz, who embodies what Make a Difference is all about.

Roz was at a Make a Difference talk, and decided to share what she had heard with 450 students and asked all of them to make a pledge to make a difference in the lives of people with dementia and their carers. The response was overwhelming, and we would like to say from the bottom of our hearts, thank you.

Here are some words from Roz, who tells us about the event from her perspective and how Tommy`s story and those who have written to him shaped the session, and inspired her to make a difference.

 

Dementia Friends/We can make a difference session

On Wednesday 10th September I stood in front of around 450 students for an hour, who started on their nursing career. I was nervous standing there with all these faces looking at me.

I opened the session asking them in one word what they knew about dementia. Words that came out was confusion, frightened, alone, sad, lost etc. These describe how someone living with dementia feels on a day to day basis.

I showed the students (I want to put newbies) a video around the bookcase analogy, to help them understand about dementia how a person can forget about an event but the feelings can still be lasting.

During the session I had a few of them standing in front of the rest of the cohort, I gave them a piece of paper with who they are. I then read out statements where they had to decide if they could complete a task or make a decision. At the end of this I then revealed that they were all the same person.

We can make a difference

I talked to the group about how it is for the people caring for their relatives living with dementia, how they feel, I showed two videos of Tommy Whitelaw on how it had been for him, from the point of diagnosis to getting the support that both his mum and he required. The other video was the one Tommy showed up in Middlesbrough the previous week. Though this video was showing the scale on how many people in Scotland are living with dementia, I wanted to give an indication of how big dementia is nowadays, to how it was years ago in the 80’s when my own nanna had dementia. On behalf of Tommy I asked the students to get a piece of paper and write down a pledge that they would do to support a person with dementia and their carers, and pin it on the board provided, place it in front if there was no room. At the end of the session I received good feedback regarding the session on how much they enjoyed it and now have a greater understanding of dementia than they did before.

Once all the students left, I was overwhelmed by how many students had left a pledge, and on reading some of their pledges, I feel happy and honoured to have included Tommy’s Story into my Dementia Friends session.

Thank you Tommy for allowing me to share your story.

Rosalyn Hargreaves

Qualified Nurse

You can read the inspiring 266 pledges here 

http://wp.me/p4l5Vd-lI

Thank you 2nd year Nursing students University of the West of ScotlandAyr Campus

Hi 

with great thanks to Susan Holland Lecturer/Practitioner in Mental Health Nursing

University of the West of Scotland for the kind invite to speak to 2nd year Nursing students today  

I met Susan earlier this year on my tour with  NHSaa  

A BIG Thank you also to  Janice Mcalister ,Dementia Nurse Consultant for supporting and partnering me at the talks as part of our tour together 

The university Runs a module   “Care of Vulnerable”  and I was very inspired by the students I met today 

Thank you #OurFuture for the time,kindness and for the personal pledges 

You can read all the inspiring pledges from today on our pledge site this Monday 

Thank you 

Tommy

MakeaDifference 

Tommy 

Earlier Today speaking Dementia Champions Forum Burton Hospital Burtonon Trent

Hi

With great thanks to Leanne Siekiera Student Nurse and Alison Haynes Lead nurse Dementia Burton Hospitals NHS Foundation Trust For the kind invite to attend and speak at the Dementia Champions Forum earlier today  Burton Hospital Burton On Trent

Thank you to everyone who took time to attend and for the great kindess 

Thank you for theopportunity to speak and for the support make it to the forum 

I look forward to visiting again soon 

Leanne is a friend on twitter and has been a great support to my campaign and work  you can read a blog post from Leanne on the @WeNurses community site  here

A BIG thank you Leanne and Allison for the kind invite and opportunity .I look  forward tomeeting  everone ,hearing more about the dementia champions and speaking about my wonderful mum and our make a difference tour 

Thanks for reading my blog, you can now watch my short films by searching 'My mums name was Joan' on this blog

A personal view - The Letters, Life and Love Stories celebration ofcaring -

Hi 

For over twenty years I travelled around the world with my job. I worked hard as did both my parents and was lucky that my job took me all over the world, allowing me to meet so many fantastic people. It was a joyful and educational experience in so many ways.

I like many people am really proud to be from Glasgow and Scotland. Having a Scottish accent is a great thingto have while traveling. I was always welcomed on my travels no matter where I was, as soon at the accent was heard a new friendship began.

So many people would show interest in who I was because of where I was from, often mentioning Braveheart, the Loch Ness Monster or whiskey! On many occasions my accent would make up for my lack of looks - personality  and finance. Having people mention your birth place when you are on the other side of the worldnever failed to fill me with warmth and pride.

Back in 2007 that all changed when I came  home to visit my mum Joan and there began a 6 year journey of sadness, joy, struggles, smiles, hope,  despair, kindness, loneliness, isolation and heartbreak.

At the lowest point I remember sitting in my room one night thinking how can this be? What happened? How can we be so lost, forgotten, lonely and close to crisis?  What was I proud of all those years travelling? Was it really just an accent and nothing more?

Since starting my campaign to raise awareness I have since found so many reasons to be proud to come from Glasgow and Scotland. I have met them on my campaign and tour, they are husbands, wifes, sons, daughters brothers, sisters, doctors, nurses, communities, people giving all they can to help and support others. Those who give time, understanding and kindness often in the face of great challenges, to help mums like mine and sons like make me make it through the darkest on nights and hardest of days.

I wish I had met them twenty years ago when I was traveling, then I could have told people the real reason I am proud to be from Scotland.

That's why the Letters, Life and Love Stories: A Celebration of Caring in Scotland Concert is so important to me on a personal note. Every day I meet remarkable people and hear the most inspiring of stories and that is a real reason to celebrate.

I hope you will help the ALLAINCE. And me  celebrate the kindness and understanding of people  the Glasgow Royal Concert Hall on Monday 20th January 2014, as part of Celtic Connections.

http://www.alliance-scotland.org.uk/news-and-events/events/spotlight/letters-life-and-love-stories-a-celebration-of-caring-in-scotland/

Tommy

Guest Blog from June Neil, Training and Development Manager RNIB

A big thank you to June Neil from the RNIB. for the guest blog 

A very warm welcome to our latest blog contributor, June Neil from the RNIB. June and her team have worked to develop resources to be used for supporting people with dementia through sight loss, which are linked in below. They are currently looking at developing a guide for carers, and would like to find out if there is a demand for this. If this is something you feel you would benefit from, please do answer the 6 short questions below and send your responses to Sarah McDermott by Friday 10th October.

My name is June Neil and I work for the Royal National Institute of the Blind. For the last 3 years I have been involved with a Sight Loss and Dementia project centred on training Vision Champions.

Sight loss is often under diagnosed in people with dementia because the signs can be difficult to separate. One condition may mask or be mistaken for the effect of the other. Often the individual may not be able to tell you about changes to their vision either through an age related eye condition or the dementia itself and will experience “hidden sight loss”.

To address this, the Vision Champion Training programme was established in September 2012 and funded for 2 years by the Scottish Government to train Vision Champions within Glasgow, Edinburgh and the Lothian’s, the Borders, Ayrshire and Arran, and Fife.

We have now trained and provided mentoring support to 63 Vision Champion from a range of health and social care backgrounds to support individuals living with dementia to:

• identify hidden sight loss
• access local eye health care
• examine if relevant vision support information is available within care and support systems
• update and implement vision support information.

The outcomes from the project have been very positive, improved access to eye health care and changes to care plans and assessment processes have been made as a result of the training.

One service user shared how they had experienced a much more relaxed vision test and did not “have to worry about giving the right answers” culminating in the new diagnosis of mild cataracts. Both the service user and his wife shared how they “found the experience much less stressful and feel they have built a helpful relationship with the new optometrist and staff”.

We hope to have correlated all our evidence and produce a final report by November 2014

Although my project has focused on the Vision Champion training it has often taken me down different avenues of partnership working.

We have a long standing working relationship with Alzheimer Scotland and have jointly produced a Dementia and Sight Loss Leaflet which support individuals and their carers to access local opticians. To supplement this we are producing a DVD to support Opticians and their staff to adapt their practices to be more Dementia Friendly.

Working with Action on Hearing Loss we produced Top Tip cards on how to support an older person with Sensory Loss There are two specific Top Tip cards on Sensory Loss and Dementia.

I am  part of a Dementia and Sight loss Interest Group, a national body that supports the development of resources around Dementia and Sight Loss. As a group we have been involved with developing the Dementia and Sight loss Section on the Social Care Institute of Excellence (SCIE)

I have also been involved with Sandra Shafii a Dementia Consultant AHP in designing a practise note on Falls.

It was indirectly through the practice note I got in touch with Tommy.

A lady living with Dementia whose vision had been affected by her Dementia, had been experiencing an increase in falls, got in touch with me. She was keen to share her experience and wanted me to not only raise awareness of the impact of dementia on vision but to look at developing training and information for carers on how best to provide support.

This prompted me to get in touch with Tommy to ask for his help to gather information on whether sight loss and falls are an area that carers require information/support on.

Tommy shared his own experience when caring for his mum. She found it difficult to judge stepping out of the bath on to the laminate flooring. To over come this, a simple solution was to put a coloured mat on the floor. This provided a good colour contrast and reduced the glare on the laminate helping his mum see where she was to step on to.

Often it is simple solutions that make the task easier both parties.

To help us establish if there is a need for Carers training and resources it would be appreciated if you could complete and returning the following 6 questions to Sarah McDermott Policy and Information Assistant at Dementia Carer Voices.

Please answer yes or no and feel free to add your own comment under each question

1. Do you know Dementia can affect your vision?

Any other comments

2. Do you or a person you care for have difficulty judging the height of steps and kerbs for example taking exaggerated steps?

Any other comments

3. Do you or a person you care for experience difficulty locating poorly colour contrasting items for example potatoes on a white plate?

Any other comments

4. Do you or a person you care for experience difficulty going out walking in dark nights or poorly lit areas?

Any other comments

5. Have you or a person you care for experienced a fall in the last 12 months

Please state number of falls

6. Are you or a person you care for fearful of falling

Any other comments

If what you tell us shows that individuals with dementia and their carers need support in this area we will use this information to seek funding to develop training and resources. Many thanks for your help

June Neil

My pledge is: To continue to raise awareness of the impact of sight loss and dementia and to work in partnership to develop suitable resources to improve quality of access to eye health care and sharing of vision support  for those living with dementia.

Below find the link to older people and complex needs services

Here you will find

Dementia and Sight Loss Leaflet

Top Tip Cards on how to support Older Person with Sensory Loss

http://www.rnib.org.uk/scotland-how-we-can-help-learning-disability-outreach-and-assessment-scotland/complex-needs-and

RNIB Helpline

0303 123 9999

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

Walking and Talking for awareness 2015 back to where it all began - will you join me ?

Hi 

inspired by my trip to Fort  William last week the beautiful scenery ,watching peolpe on the west highland way from the train along with chatting to peolpe on the return journey and a coffee with Ian Welsh chief executive at the ALLAINCE Scotland I have decided to do another walk roud Scotland to raise awareness 

Back in 2011 I walked round Scottish towns and cities whilst caring for my mum to collect life stories 

I was humbled and inpired by the stories I collected and peolpe I met 

May 2015 I will be doing a walk again stopping of each evening to speak in towns and cities about dementia and caring I hope peolpe will join me along the way 

Very much in the early planning at the moment but I hope peolpe migh join me along the way to raise awareness 

Will post a plan over the next months any help or support or company along the way will be gratefully needed and accepted 

You can view my film from my walk 2011 with Carers sharing experiences below 

Thank you Scotland's beautiful scenery peolpe and a coffee with Ian for inspiring me to walk for awarness again 

Tommy 

In 2011 Tommy produced a short film The video, which was later shown at the Scottish Parliament, includes families and carers reading from the letters they sent him during his dementia awareness tour of Scotland’s towns and cities. To view the FILM http://tv.enterprisescreen.co.uk/watch?v=347

Videos walk to collect life stories 

September talks #Teesside #Glasgow #warrick #Burton #UWSAyr #Hertfordshire

                                       

Hi

September is world Alzheimer Awareness Month with world Alzheimer Day on September 21^st our  ‘make a difference’ tour has a few talks lined up over the month

On Monday  I had the great privilege to attend and speak at A  student led conference Teesside University with great thanks to Michelle Hudson  and all the team for the invite,kindness and amazing make a difference pledges we received  

161 students made a pledge after my talk you can read more about the event and pledges HERE 

September 16th I have been invited to speak at Glasgow School of Nursing to Nursing Students ,I was a guest speaker on 2 occasions last year and look forward to speaking again   

After my talk Glasgow School of Nursing i head of to catch  train to speak at the  complementary& volunteer therapists conference being held  Warwick Universityon Weds 17th September. With great thanks to Ann Goddard for the kind invite 

Next Morning 18th  I Travel to speak at the Dementia Champions Forum Burton Hospital Burton On Trent a big thank you to Leanne Siekiera Student Nurse and Alison Haynes Lead nurse for the kind invite 

After the event Burton on Trent I head back to Glasgow for the night next day I have two talks at the University West Of Scotland Ayr Campus 9am and 1pm  we 

will also do more filming at the University for the MAKE A DIFFERENCE short film we are very proud to be part of with NHSAAA and the University 

last but by no means least i have been invited to speak at the Hertfordshire Patient Stories Conference 26th September being held at the Fielder Centre Conference Center with great thanks ot Catherine Pelley for the kind invite 

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