National Dementia Carers Action Group

 
It fills me with both pride and hope that Alzheimer Scotland has started the National Dementia Carers Action Group
Based on some of the issues raised  on the Tommyontour campaign .
I had a long chat with Henry Simmons (Chief exec,Alzheimer Scotland)yesterday and was very moved and impressed with what had to say. He has cemented my belief in the importance of this group and the journey ahead
The group will be made up of carers and will put together a manifesto and polices to campaign for at local and national level.
Irene Oldfather will be the first chair of the group supported by Caroline brown along with a group of carer/family members and supported by Sarah and Jim from Alzheimer Scotland.
 Irene and Caroline aong with Irene edgar have become firm friends of mine, and have great insight in to the issues at both personal and professional levels
I look forward to working with the group and tackling the issues ahead ,Along with making some new friends along the way

Tommy

I hope that you can all come along to the these meetings so that we can build on the work that Tommy Whitelaw has, and is doing, to make a real difference.  Please let Shona Paxton spaxton@alzscot.org  or me know if you will be attending the next meeting. .(Saturday 21^st January )

Jim Pearson
Welfare rights manager
Alzheimer Scotland

A Merry Christmas And A Campaigning New Year...................

Merry Christmas and a peacefull new year ,from Joan and Tommy

Care Commission................

Care commission

Hi,

 I have made contact with the care commission and have sent them details on my tour,

I have requested a date to meet, to discuss the tour, the people I have met with and hand over copies of  the letters,

I have also asked if I can bring some families I have met on this tour to tell their stories in person

I will post more details later once I have a date

Tommy

Proud to be Scottish

In my previous life, before my mum was diagnosed with dementia, I was very lucky and privileged. I travelled round the world many times and stayed in places like South Africa for many months. 

As anyone one will know who has travelled, having a Scottish accent is a gift. No matter where you go, you receive a warm welcome. As soon as people hear you talk and find out where you’re from, they welcome you with warmth.

AND I HAVE ALWAYS been proud on my travels to be from Scotland. 

Over the last 5 years I have often questioned - what was I really proud of?

After all the difficult times on this journey, I have thought ‘what is there to be proud of?’ when both my mum and I are facing this illness and all that come with it alone. Why do we face the lack of understanding and the constant fights to get the correct care and help for both of us? 

Over the last year I have found a true and honest reason to be proud to be Scottish.I have met and talked with the reason to be proud, they have written to me and they have comforted me. 

They are husbands. Wives. Brothers. Sisters. Sons and daughters and, against all odds, they are caring for or have cared for someone they love. I now have thousands of reasons to be truly proud to live in Scotland. 

I wish you all a happy Christmas and a more comforting New Year. 

Thomas and wee Joan (my amazing wee mum)

Improving Care For Older People Event.....

Hi

I attended the above event as a guest at the Marriott hotel on Friday

Attend by around 200 people from the care sector and carer groups

The event was Hosted by NHS greater Glasgow and Clyde.

I was part of a discussion team with NHS officials, as most of the topics that where raised where on dementia.

I handed out 20 copies of the film and will be meeting Daniel Connolly after the New Year to discuss an awareness tour within the care sector

He is also looking at putting the film up on NHS websites

Tommy

Busy times again!

I had a very positive and encouraging meeting with Stephen Fitzpatrick,  Head of Adult Services and Ann Cummings yesterday, accompanied by Sarah Burgess (Alzheimer Scotland's Regional Manager for Glasgow).

We discussed caring for my mum, the tour, the letters and the people I have met. Afterwards I handed over some copies of my film and a short report on the letters I was sent. 

 

Sarah gave Stephen a copy of Scotland’s National Dementia Strategy and a paper updating him on the work of the Change Fund group, which has been tasked with improving services and support for people with dementia and their carers; one of the key pieces of work being to improve post-diagnostic support. (The Change Fund is a pot of money from the Scottish Government, for local services to use to develop new ways that help to support people within their own communities. Its aim is to develop move the focus of care away from hospitals and care homes and more towards communities. Glasgow City has £7.9m in its Change Fund this year, and there will be funding for 3 years).

I have arranged to copy more some more thoughts and feeling from the letters and hand them over after the new year to Ann and Stephen. It was great to be given the opportunity to talk the people in power in Glasgow I really appreciate Sarah being able to accompany me.

January plans so far:

Will be meeting with Peter Daniels, NHS Greater Glasgow & Clyde Board Vice Chairperson, in early January, then Ian Welsh from Long Term Conditions Alliance Scotland to discuss my campaign. 

My first talk in 2012 will be at the North Dementia Forum. I'll also be working on a new film and meeting the Deputy First Minister Nicola Sturgeon again to discuss the letters handed over in November.

Hope you all have a good festive season.

Cheers,

Tommy

Letter To MSPs And Councilors

I am writing to inform you of a campaign I started in June 2011.

Unfortunately this was borne of frustration, loneliness and isolation

Whilst caring for my mother Joan who was diagnosed with dementia in

August 2007.

My personal experience and the experiences of many others have been

Documented in the short film (copy attached).

In short, this indiscriminate illness wreaks havoc with the sufferer,

Their carers and sadly our society as the number of sufferers increase.

In my opinion, the devastation and lack of resources and communication

Regarding this illness has reached crisis point.

I trust that you and your colleagues can liaise with each other and

Include social work, GP surgeries, hospitals, day centers, nursing

Homes, education establishments, carers groups, charities and

Organizations to continue you to raise awareness and improve care

Provision, which is currently inadequate.  

In order to understand the seriousness of the impact this illness has

On the sufferer and their carers, there needs to be a discussion with

All relevant groups, locally initially and ultimately nationally at

Executive level.

Sadly, I cannot visit your surgery as I am caring for my mum 24/7

Without respite/help. 

I look forward to hearing from you.  If you cannot access film, please

Phone.           

As the representative for my area I desperately need you urgent

Attention.       

Yours sincerely,

Tommy whitelaw

http://tv.enterprisescreen.co.uk/watch?v=347

http://tommy-on-tour-2011.blogspot.com

Keep Writing

Hello

Just a wee update on the Tommyontour awareness campaign

I will be meeting Stephen Fitzgerald (head of adult services) on December 15^th to discuss the letters and thoughts from people I have met on this tour, Sarah and Cathy from Alzheimer Scotland will accompany me to this meeting to help me talks about dementia in Glasgow.

I have a further meeting with the deputy first minister in the New Year

Tommyontour will keep going next year to campaign on behalf of families struggling with dementia at the local elections

So keep the letters, life stories coming they help me paint a picture of what it’s like living with and caring for a loved one with this tragic illness

Tommy

Meeting With Head Of Adult Services

I will be meeting with Stephen Fitzpatrick on December 15^th to discuss in detail my campaign, the letters .the people I have met with ,the issues brought up over this tour and our hopes  for the future of caring in Glasgow

There is still time to send opinions for both this and my next meeting with deputy first minister Nicola sturgeon in the new year

Tommy

Caring At Home

The problems of caring for someone constantly shocks and astounds me

My mum was sent home from her wee day group on Monday as she has lost a bit of her mobility and balance lately

I then called yesterday to ask about today to be told they don’t have the staff or facilities to look after my mum as she is in danger of falling

So it’s back to me and my mum in the house on our own for the forcible future, 24 hours a day .

I will deal with that, I always have but it’s not good for my mum, as my mum needs and will miss the social interaction

It’s all a mess as far as I am concerned

Tommy

On The News Again

Old Friends Helping Out

A big thank you to Andy Franks and Coldplay for the tickets they gave me to use for an Alzheimer Scotland charity auction at Hampden a few weeks Back,

The tickets raised quite a sum, also thanks to Jeremy and Paul from Livenation, who donated the Coldplay merchandise as part of the prize,

Its great  that  some friends I used to tour with are helping Tommyontour raise money for a worthy cause

Tommy

Carer Rights Day 2011

Carer’s rights day has been a busy one for Tommyontour

Had an early start speaking on  good morning Scotland ,followed by a talk and viewing of the film at Glasgow city councils carers rights launch in George square ,I then had an interview with STV news ,radio Clyde and the evening times

I hope you can keep an eye or ear out for them

Tommy

Back To Parliament

I am truly happy to announce that  deputy first minister Nicola sturgeon has invited me back to parliament early January to talk in more detail about the letters and the Tommyontour campaign

Deputy first minster Nicola sturgeon has shown great interest in the letters and the campaign from the start, and I look forward to telling her all about the amazing people I have met all across Scotland over the last 10 months

Tommy

A New Film And Book

Just a wee update,

I will soon be starting work on a new short film to tell of caring for a loved one in Scotland in more detail,

I will also hopefully be producing a book about the tour, the letters, the people I have met along the way along with the opinions and thoughts on caring from some carer groups

This short book will be given away free and sent out to Msps and local authorities.

Tommy

Next steps

Hiya,

Thank you again to Alzheimer Scotland for the kind offer to support 'Tommy on Tour' and help me continue raising awareness for carers and families.

I had a good talk yesterday at North West Carers in Patrick: showed the film and got a great reaction, with lots of debate after the talk and the promise of more letters.

On Thursday 1st December (next week), I'll be speaking at Pollok Carers and I'll be talking at Glasgow City Council's 'Carers' Rights Day' on Friday 2nd December. I'd like to thank Ann Cummings for inviting me to speak about my campaign and my experience of caring for my mum.

Another big thank you to Mark MacDonald MSP and Fiona McLeod MSP, for speaking about the 'Tommy on Tour' campaign and film at the Carer’s Strategy debate in the parliament on Wednesday afternoon. Click here to watch debate on BBC website, the mention is about an hour in.

 

'Tommy on Tour' will continue to raise awareness and campaign: any new emails or letters I get about caring for a loved one with dementia will now be forwarded to the new action group being set up by Alzheimer Scotland, to help inform their manifesto for the local council elections in 2012.  

Cheers,

Tommy

A time for change and a message of thanks

Hiya,

I'd like to thank Henry Simmons and the team at Alzheimer Scotland for all the amazing help and support over the last 9 months. I wish them well with new group they are setting up and I hope it brings help to families like mine all over Scotland.

However, I as 'Tommy on Tour' will be looking at new ways of campaigning on behalf of families and carers of a loved one with dementia.

Cheers,

Tommy

Heartbreak and hope

Hiya,

I'm not a man who's often lost for words. It might be difficult sometimes, emotional. But usually the words are on the tip of my tongue and I'll find them eventually.

This time, though, I just don't have the words. So you'll have to bear with me if this isn't the best written blog update in the world. It's tough when you feel so very much that you can't do your feelings justice.

Last week I got the chance to meet with MSPs and show them my film. And I thought that was as good as it could get. That reaching the Parliament was the big achievement.

I was wrong.

Yesterday and today I have had the privilege of speaking at the Glasgow North East Carers AGM and the Carers Link AGM. I am completely and utterly overwhelmed by the reaction my fellow carers have had to the 'Tommy on Tour' campaign and to my wee film. They embraced the campaign and the film - they took them to their hearts - and they thanked me for all that I had done. For speaking out. For taking their stories and making sure they were listened to. They thanked me for making sure they were heard and recognised. I feel humbled by it and so very glad that the people whose opinions most matter in all this support what I have done.

I really wish I could tell you how much all this means to me. I'm in awe of the kindness and generosity and goodwill shown towards me and the 'Tommy on Tour' campaign over the past couple of days. Most of all, I have a sense of shared experience, of heartbreak and hope. Heartbreak in what we've already been through, all the difficulties we've faced, heartbroken by dementia itself. But hopeful, so hopeful, that there are better things ahead. People are enthusiastic about the new carers group that I'm chairing and how it's going to build on the work that 'Tommy on Tour' started. They think it can really make a difference.

If our stories can be read, can be heard, imagine the difference it'll make if all those decision-makers start to act on them. Imagine how much better life could be if politicians and doctors and councillors and social work and everyone who is involved in caring for someone with dementia read those stories and thought about a new way of doing things. A better way. A way that carers themselves have wanted for so long.

I have to thank each and every person who has spoken to me at these events. Who has told me what the campaign means to them, or just held my hand in a way that makes their feelings clear without words. Such kind, wonderful, caring people. Thank you.

Tommy

Back to Bellahouston

Hiya,

Back in June, my own wee tour of Scotland (well, a few bits of it anyway!) started from outside Bellahouston Leisure Centre in Glasgow. This Sunday, a young lad called Kris Rodden will be starting another walk from the very same place. Kris' mum has dementia, same as my mum. His mum was diagnosed with Alzheimer's disease when she was just 59.

Kris and a lot of other people, including Tom Urie from River City and Davie Anderson from City Lights, will be doing a sponsored 10K at Bellahouston in aid of Alzheimer Scotland's services in Glasgow and East Dunbartonshire this Sunday at 10am. I'll be there too. If you can come along, you'll be made very welcome. To find out more, you can read Kris' Facebook page or his Justgiving page.

Cheers,

Tommy

November news

Hiya,

Thanks to Frieda and Jasmine, I've got a wee bit more Nicola Sturgeon's speech that I can pass on. Firstly, she promised to personally read all the letters and emails that were sent to the campaign. Secondly, she made this pledge:

"I will do everything I can, in the priveledged position which I hold, to make things better for people with dementia and help in areas more than ever.  I will provide support that carers need to allow them to keep caring."

Which is good, really good.

You might think I'd be having a bit of a rest after last week's excitement. Not a bit of it! I've been asked to go to the Glasgow North East Carers AGM on Thursday (a place really close to my heart, as many of their carers wrote to 'Tommy on Tour' and some of them are in my wee film). Then I'll be at the Carers Link AGM in Milingavie on Friday. Tommy's still touring!

Here's another photo from last Thursday: me and some of the other carers with lots of MSPs after First Minister's Questions. You can see me next to Johann Lamont in her red jacket.

Cheers,

Tommy

Still a bit emotional...

Hiya,

I wanted to write about what happened yesterday when I got home, but I just couldn't. It was all just a bit too much. The past 9 months have been a journey. And it has been. It started out at walking pace. But I'll tell you, it's got faster and faster over the past couple of months and, since yesterday morning, the life of Tommy Whitelaw has been like a rollercoaster!

There was a wee article in the Herald today, but I'm told there'll be a bigger one tomorrow about what happened at the Parliament. Well, you can see the photo from yesterday - I handed over the letters! More than that, I had my reception at the Parliament. I showed the film and I spoke for a few minutes. Usually when I speak I do it off the cuff. But I knew I only had a short time and I wanted to fit everything in that I needed to say. I got a bit emotional and I think I messed up a few lines. I've put it below, so you can all read it.

Friends, I’d like to take a few minutes to tell you how I started this journey.


I first called Alzheimer Scotland in early January this year, with the idea of doing a walk to raise awareness of caring for someone with dementia and to collect letters from people who were willing to share their experience, good or bad. I promised I would then hand those letters into the Parliament.


I had no agenda in mind. I hoped, in many ways, that the struggles I faced were mine and mine alone, as this would be easier to fix. It saddens me to say that this is not the case; the majority of people I have met have faced similar or greater struggles than myself.


It would take many hours to talk in detail about all the issues raised on this tour. I have travelled around our country and spoken to so many carers over the past 9 months, I have read many letters and I have listened to accounts from people that have moved me to tears. I have been inspired by these carers and I’m proud – I’m proud that I live in a country where individuals look after the people they love, the people who bring us in to the world, our husbands and our wives. But these carers are struggling on their own dealing with this cruel illness - they need help, WE need help. I think a healthy society SHOULD be judged on the basis of how it treats the needy – this matters to us in Scotland but my experiences this year have told me that we are not doing enough.


I believe the problem starts with the way people with dementia are looked upon from the day of diagnosis: almost written off and looked upon as a strain on society. I don’t know how many times I have been told ‘oh its dementia’, ‘oh that’s the dementia’ or ‘his mum has dementia.’


So I would like to say the following to all professionals who work in the care sector, and I hope I speak for other people who have a loved one with this illness when I say…


My mother’s name is Joan Whitelaw.
She was born on the 15th of July 1939.
She has been:
• a daughter,
• a sister,
• a wife,
• a mother,
• a friend,
• a workmate,
• a neighbour,
• a valued member of her community,
• a true, honest and dignified lady...


and, like so many others of the 82,000 plus people in Scotland, she is now labelled as ‘a wee women with dementia’. An illness we, at this time, have no cure for, written off, given no value and most certainly not given the respect and care they deserve. This is first change we have to make: the attitude towards loved ones with dementia and the respect given to the families and loved ones who care for them.


I urge all people who work in the care sector to respect and listen to all who live with this illness and their carers; they just might have something to say.


I don’t think it’s too much to ask for people with dementia and their families to be able to go to a one-stop shop. So that, when someone you love is diagnosed with dementia, there’s a key worker you can go to who’ll be able to give you advice, information and help to arrange any support you might need.


To finish, I would like to thank the Deputy First Minister, Nicola Sturgeon, for her attendance here today, her ongoing interest in the ‘Tommy on Tour’ campaign and for agreeing to read the experiences of so many carers across Scotland. I would also like to thank my local MSP, Johann Lamont, for her interest in the campaign and for hosting this wonderful event here at the Parliament.


I would like to thank Henry Simmons and all the team at Alzheimer Scotland for their help and guidance since the first day of the Tommy on Tour campaign. Especially Kirsty Jardine who has held my hand for the last nine months I am glad that everything we have learned from carers across Scotland will be used to campaign further, to improve care and support for people with dementia and their families. Thank you also to Irene Oldfather, who has offered guidance and support, as well as Brendan and Jamie from Enterprise Screen, who helped me to make the film you’ve just seen.


Last, but by no means least, I want to thank all the groups I have attended, the people who have shared their stories and written their letters and a big thank you to the families and carers who have accompanied me to parliament today.
AND BEFORE I FINISH I NEED TO SAY:


FOUR AND A HALF YEARS AGO I WALKED OUT A HOSPIAL WITH MY MUM AFER HER DIAGNOSIS OF DEMENTIA - AND WE WALKED OUT ALONE.


2 MONTHS AGO I WALKED OUT A CLINIC, AFTER AN EVALUTION OF MY MUM'S CONDITION AND MEDICATION, HAVING BEEN TOLD 'THERE'S NOT MUCH MORE WE CAN DO, ITS TIME TO CONSIDER RESIDENTIAL CARE' - AND WE WALKED OUT ALONE.


WE HAVE BEEN ALONE FOR MOST OF THIS TRAGIC JOURNEY. NOBODY IN SCOTLAND SHOULD HAVE TO DO THIS ALONE


Thank you.

Johann Lamont, me & Nicola Sturgeon at the Scottish Parliament

Like I said, I got a bit emotional saying it. A lot of people got emotional hearing it. Nicola Sturgeon got up to speak after me, and I could tell she was a bit emotional too. She said my wee film was "probably the most powerful few minutes of television I have ever watched" and that she would do everything she could, politically and personally, to make life better for the carers of people with dementia. She said a lot more than that actually, really good stuff, and I'm sure somebody wrote it all down, so I'll put it on the blog when I can.

This isn't the end of the story though. More like the first chapter. The start of the next chapter is that I'm going to going to be chairing the national dementia carers action group that Alzheimer Scotland are setting up. We'll be putting togther a manifesto: there's local government elections in May next year and I know that's where a lot of carers have been having problems - at local level. Carers of people with dementia want changes and they need better support. The Group will be speaking to lots of carers so we can find out exactly what's needed. That'll help us to know what we need to campaign on and what needs to go in that manifesto - the five most important things to people caring for someone with dementia in Scotland.

Loads of people have been in touch today. People I used to know back in the days when I toured with bands rather than memory buses. It's great to hear from them. It's great to think of people in the music industry watching my film too. I've had requests to do talks all over the shop. I'll need a bit of time to get back to everyone and to work it all out in my own head. First and foremost to me, as always, is my wee mum and what's best for her.

Thanks again, everyone.

Cheers,

Tommy

I'll do a proper update soon

But in the meantime...

Don't think I'll be able to sleep tonight!

Hiya,

Well, here we are. Almost there. Tomorrow I'll be handing in all the letters & emails sent to 'Tommy on Tour' into the Parliament. Straight into the hands of Nicola Sturgeon. Me, and a big group of other carers, will be meeting MSPs and talking about the big issues related to caring for someone with dementia in Scotland. We'll be watching my wee film too. If you haven't seen my film yet, please watch it and share it with your family and friends. Stick it on your facebook or your twitter. I'd like as many people as possible to sit up and take notice of what carers of people with dementia have to deal with on a daily basis.

It's been a long journey. An amazing journey. I've met some wonderful people and I've heard a lot of stories. Some happy, but many more sad and some absolutely heartbreaking. I hope my wee campaign can make a difference. I hope the politicians and the doctors and the councillors and all the other people who make the big decisions sit up and take notice. The carers of Scotland deserve nothing less.

Thank you to everyone who wrote to me or shared their story with me.

Thank you to my wee mum, wee Joan Whitelaw, the best mum a man could have.

Cheers,

Tommy

One more week to go

Hiya,

So, on Thursday 10th November, at around 1pm, I'll be handing over the Tommy on Tour letters to Nicola Sturgeon. I still can't quite believe how far 'Tommy on Tour'' has gone since the start of this year, when I first thought about doing some sort of walk to meet carers of people with dementia, collect letters and make people sit up and take notice about the struggle carers face on a daily basis. I didn't have an agenda in mind. I didn't want to influence the letters people sent me. I just wanted to hear their stories. I suppose I really wanted to know if I was alone in what I was going through - caring for my lovely wee mum.

Well, Alzheimer Scotland have put together a report on the all the letters and the emails that were sent. There's quite a few. From the Highlands to the Borders. And if I've learned one thing from collecting the letters and meeting so many wonderful carers across Scotland it's that I'm not alone. I was never alone. But in some ways I almost wish I had been. If it was only me struggling, me finding it hard to cope, me banging my head against a brick wall, then maybe there was a simple answer and it would be easy to fix. But there's loads of carers like me. They've written to me, emailed me, met me and spoke to me. They've given me their stories in good faith and now I'm taking them to the Parliament - to the people who should be able to make at least some of the things I've been told about a bit better.

You might have seen an article in the Sunday Herald at the weekend. Russell, the journalist who interviewed me way back in January, did a follow-up interview about everything that's happened. You can read about it here Letters from the edge (you need to sign up to the Herald website to read it, but you can sign up for free). I'm also going to be on Radio Scotland again this Sunday morning, with Cathy Macdonald, on Sunday Morning with....

Last, but not least, I've got the video I'm going to be showing MSPs and you can now have a look at it on my blog. It's powerful stuff. I'm grateful to all the other carers who agreed to be filmed for this - thank you so much to Sandra, Margaret, John and Irene.




Cheers,

Tommy

A lovely return to the Glasgow North East Carers Centre

Hiya,

As part of my day at the Parliament on 10th November, I'll be showing a wee film about 'Tommy on Tour' to MSPs. In that film, there are some of the carers who wrote to me reading their letters out loud. I've never got used to being filmed and I take my hat off to anyone brave enough to go in front of a camera!

We filmed 3 carers from the Glasgow North East Carers Centre up in Easterhouse yesterday. I visited them a while back and it was lovely to see them again. Like so many of the carers' groups I've talked to, they made me feel really welcome and their support means a lot to me.

Me with all the wonderful folk at the Glasgow North East Carers Centre.

You've still got a couple of weeks left to get your letters and emails in to the Tommy on Tour campaign. All the contact details are at the top of the blog.

Cheers,

Tommy

It's the final countdown!

Hiya folks,

It's been a quiet couple of weeks on the blog, but I'll tell you, it's been a busy fortnight for me! I've got loads to talk about, so you might want to fix yourself a cup of tea now...

First things first - I'll be handing in my letters to the parliament on Thursday 10th November. There'll be a display of the letters for MSPs, they'll be shown a wee film about the tour and I'll be talking about everything that's happened over the past few months. I'll have some other carers with me: people who've written letters about what it's like to look after someone with dementia. A few of the folks from Alzheimer Scotland will be there as well. But the main part is that I'll be handing all the letters and emails over to Nicola Sturgeon, Deputy First Minister. The words, opinions and experiences of carers in Scotland will reach the people who need to read them. The whole shindig is being hosted by my local MSP, Johann Lamont and there's been lots of help from Irene Oldfather too.

In the meantime, I'll be at the Evening Times Community Champion Awards this Thursday night. I was very kindly nominated by Stuart Horsburgh at Strathclyde Police (who helped so much with the start of my tour in Glasgow back in June) and somehow I made it onto the shortlist! It feels a bit strange, if I'm honest - I think every carer's a champion. But if it generates more publicity and gets more letters in, then it's a good thing.

You might have seen me on the telly or heard me on the wireless last Wednesday. I was on BBC Radio Scotland in the morning, then BBC Reporting Scotland that night talking about poverty and how it affects carers. Given the last couple of winters we've had, it's clear to me how fuel costs affect anyone caring for someone with dementia: it's a lot of money that most of us just can't afford. I'd like to thank the Princess Royal Trust for Carers for their involvement in that coverage.

There you have it, Tommy on Tour is back at marching pace again! You've got until Thursday 10th November to send your letters and emails in. I'll make sure that every one of them is handed into the parliament.

Cheers,

Tommy

On his bike for Tommy on Tour!

Hiya,

One of the nicest things about 'Tommy on Tour' has been the way I've got to know loads of people in my own neighbourhood. There's a lot of talk in the newspapers about people not knowing their neighbours any more, not recognising people in their own street. Well, it used to be true for me, but not any more. I feel like I know so many people in my wee part of the world and it's mostly because so many of them have got behind me and supported me in my campaign.

One of those people is Colin Singh. He's from the local hardware shop near me on Paisley Rd West. They were one of the first places to put a 'Tommy on Tour' poster up and, if you look back at my earlier blog posts, they treated us to samosas when I started the walk in June.

Colin, my mum & me outside the hardware shop.

Anyway, Colin did the Pedal for Scotland bike ride earlier this month in aid of Alzheimer Scotland and he's raised a lot of money. Thanks, Colin! He's not stopping there, either - he says there's more fundraising on the way!

It can be easy to feel like a stranger in your own community. But it doesn't have to be like that. Chat to people, get to know your local shops and businesses. Honestly, there's some wonderful people around.

Cheers,

Tommy

September already - where does the time go?

Hiya,

I can't believe it's September. Sorry for not posting much on the blog, I'll have to fire my secretary ;-). Truth is, I'm keeping really busy. Tommy on Tour might not be on the front pages (well, not right now), but it's definitely still moving forwards.

I've got involved in a few different projects that are looking for carers' opinions about support for people with dementia and their carers. I might not get to meet as many people as when I went to the carers' centres (and I miss that), but it's been great to share what I've learned with some people making big decisions that'll affect carers like me. It's not just my own experience - I've learned so much from so many people these past few months.

We're still on track for the big letter handover. I'm hoping it'll be in early November, but as soon as I know for definite I'll be posting it on the blog. Thank you so much to everyone who's sent a letter or an email. Every single one of them will be handed over to Nicola Sturgeon. That's a promise from Tommy. For those of you who've not had a chance to write something yet, or don't know how to say it, there's still time. I'm still collecting letters and emails.

This has been a huge part of my life. When I look back at 2011, I can't quite believe how much has happened. It's changed me, I can tell you that. I'm not the same man I was way back at the start of this. I hope I've managed to make a wee bit of a difference - only time will tell.

Cheers,

Tommy

Chatting to the folks in Baillieston

Hi again,

I had a great talk last week with carers at Baillieston Community Care. They're a charity that's been providing services for people with dementia in the east end of Glasgow since 1992 - a cause close to my heart. They want to make sure that people with dementia can stay independent and in their own homes for as long as they can, as well as supporting carers and offering respite.

Something I really like about doing these talks is the way that, by getting carers to talk about what matters to them, you can start to see the tension in the room ease off. It's always high to start with, plus people get emotional when they talk about the difficult stuff (and sometimes the good stuff too). But because they've been able to chat about things and share what they think, it can really help them feel better. You just need a few chairs, perhaps a cuppa, and a group of people who want to talk.

The talking's important, but the letters are important too. I know how hard it is to sit down on your own (especially as a carer - time on your own is a rare thing!) and put things down in black and white. It's a big step, sharing that sort of information about yourself and the people you love. And I know a lot of people have wanted to write letters, but not got round to it yet. Thing is, I believe the letters will be what makes the difference. It's hard to share a story that's just been yours, or your family's, or your friends'. But if we share our stories, our experiences of what's good and what's not so good, then the people who make the big decisions about care and health and social work can read them. And if they read our stories, all our stories, then things can start to change - for the better.

If you send me a letter or an email, I will take it to the Parliament and it will be read. That's my promise. But I need the letters first.

Cheers,

Tommy

The glorious 12th!

Hiya,

If you're a regular reader of my wee blog, you'd be forgiven for thinking that I've been on my holidays this past fortnight - all this time and no updates! Truth is, I've been all over Glasgow (and beyond!) speaking to carers' groups about 'Tommy on Tour' and asking more people to write letters. I might not be on the TV right now, but you can be sure that I'm keeping busy.

Lots of people have been asking me when these letters will be handed in. Well, emails are going back and forth to the Scottish Parliament and I'm hoping it'll be in the autumn. I'm also hoping that it'll be more than just handing over letters - but more about that nearer the time.

One of the best things about doing 'Tommy on Tour' is getting the chance to speak to loads of other carers. It makes me feel really humble when so many people share their personal thoughts and experiences of dementia with me - either in the letters or when we chat. I spent a long time feeling alone as a carer. Isolated. Cut off from all the people I used to know and the things I used to do. Now I know that lots of carers feel like that - and it's not right. Carers shouldn't have to feel that they're on their own. I hope the people who finally read all these letters will see how important it is to make carers' lives easier.

Last Friday I was at a Carers' Link meeting in East Dunbartonshire. I don't know how they found out, but a wee birdy must have told them it was my birthday. They even had a cake for me! I couldn't believe it - it brought a tear to my eye.

Thanks again, everyone and keep writing!

Tommy

PS I'd like to say a quick thank you to Lynn Williams at the Princess Royal Trust for Carers. Have a look at their campaign for the 2012 Scottish local elections - Carers Votes Count (Facebook page - require login).

A wee round-up of what I've been up to

Hiya,

Busy times! I've been here, there and everywhere over the past couple of weeks. I've been chatting to loads of other carers, which is always a real privilege. I'm even getting used to speaking in public - never thought that would happen!

Since I last updated my wee blog, I've been to:
North Dementia Forum (Bearsden)
North East Carers (Easterhouse)

South West Carers Centre (Govan - with thanks to Quarriers)

Oxford Street Carers (city centre)
South East Carers (Cathcart)

The more talks I do and the more people I get the chance to meet, the more I realise that it's all about making a difference at local level. It's the help and care and support that you get in your own town that's key to it all. Getting your local social work dept, or your local council, or your health board to listen to you - that's what most carers seem to be really interested in. At least, that's what I'm hearing again and again from the carers that I meet.

This week and next week I'm doing my talk to Alzheimer Scotland's Dementia Cafe's in Glasgow. Next week I've got a talk in Springburn too. Tommy's still touring!

Cheers,

Tommy

PS my cousin took a lovely photo of my wee mum and her sister, Margaret, in Largs last week. Thought it'd be nice to share it.

Still touring!

Hiya!

I had a lovely day in Prestwick yesterday and met some wonderful people. Jenni, the local Link Worker who organized the day, was fantastic. I showed the wee film about my walk then spoke about my tour. Then the best bit - a good hour of sitting and chatting as a group, talking about all aspects of dementia and being a carer. 

There are so many carers and, while we all have a different story to tell, there's a lot we all have in common too. One of the best bits about doing this tours is having the chance to meet so many of them. 

Tommy

Hi again!

Hiya folks,

Sorry it's been a bit quiet on my blog over the past few days. It's not been as quiet as that for 'Tommy on Tour'!

Got a few more visits coming up over the next couple of weeks. Going to a Princess Royal Trust for Carers group tomorrow in Glasgow, an Alzheimer Scotland carers' group in Prestwick on 6th July and the North Dementia Forum in Glasgow on 13th July. Busy times!

All the best,

Tommy

Even more thank yous! Brilliant support for Tommy on Tour :-)

Hiya,

Had a fantastic day in Kilmarnock. Just want to thank Yvonne Stewart and Katy Hawker from Alzheimer Scotland for getting me involved in today's event and letting me meet the Musical Minds group.

Big thanks also to David and Perry (for arranging Take That tickets) and Keith and Benny (for Bon Jovi tickets) - absolutely fantastic!

Cheers,

Tommy

More tour dates and a very big thank you

Hiya,

Sorry for being a bit quiet over the past couple of days - trying to get back into a routine after my big walk. Letters and emails are still coming in, which is fantastic. If you haven't written a letter yet, you've still got time. All the contact details are at the top of the blog. I'll be at a post-diagnostic support event in Kilmarnock tomorrow and a carers' event at the Thistle Hotel in Glasgow on Thursday - the tour's not over yet!

I want to say a huge thank you to Ivan Kushlick and Stacey Maranz for arranging for two Kings of Leon tickets at very short notice for a raffle prize. They've been fantastic - helpful above and beyond the call of duty.

Cheers,

Tommy

Gold stars all round!

Hiya,

If you've seen my wee film, you'll have seen me chatting away to some pupils from Lourdes Secondary School. They've been doing a project on caring and it was great getting the chance to speak to them about what it's like to be a carer.

Me with some of the pupils from Lourdes Secondary School

Well, today I was given over 100 letters from pupils in s1 at the school. All about caring: young carers, kids looking after their parents and other relatives, how their families are coping with grandparents who have dementia. It's amazing - so much thought and effort has gone into them. I've even been invited back next term to talk about reading the letters. I'm overwhelmed, I really am.

I'm so chuffed that young people are thinking about stuff like this. They're the ones who'll be making a difference a few years down the line.A big thanks to Mrs Lennon, Mrs McGettrick and all the staff and pupils for embracing my campaign to collect letters and raise awareness. 

All the best,

Tommy

Carers Week and photos from Glasgow Green Family Funday

Hiya,

This week is Carers' Week. Sometimes being a carer can make you feel like your all on your own. But you're not. There's an army of us across Scotland, hundreds of thousands of us, caring for people at home. Don't try to cope with caring on your own. There's no shame in getting in touch with other people - charities, social work, your GP, your local church - to get information and help.

Carers Scotland have put up a page on their website, letting people know that my tour is still going, as have the Dementia Services Development Centre. Alzheimer Scotland have also put the story as top news item on their site today.

I had a great time at the Family Funday in Glasgow Green on Saturday. Alzheimer Scotland's had support services in Glasgow for 21 years and they wanted to celebrate it with a great day out in the city. We even had some sunshine - well, in the the morning anyway! I met some more people and I was asked to draw the raffle.

Me drawing the raffle, with help from Angi (Dementia Advisor)

I'm going to the dementia cafe at the Helensburgh Dementia Resource Centre (16 East Clyde Street) this Saturday, then I'm off to Kilmarnock on Wednesday 22nd. Don't want to let the grass grow under my feet!

Cheers,

Tommy

A week's a long time in awareness raising, but it's not long enough...

Hiya,

I'm back home, back in Glasgow. My mum came back from respite yesterday and I'm so glad to have her with me again. I've missed my wee mum.

It's hard to believe that this time last week I was meeting Nicola Sturgeon, Stewart Regan and being filmed in football stadiums. This time last week I was headline news. Well, I might not be on your telly tonight, but 'Tommy on Tour' marches on! Over the next few weeks I want to collect more letters and keep raising awareness. As soon as I know where I'll be, it'll be on the blog. Looks like I'll be in Ayrshire around the 22nd, hopefully in Helensburgh at some point too. Can't stop the tour now, not when it's doing so well!

I'll have some photos from the funday at Glasgow Green up soon. In the meantime, I want to share a few more pics for last Monday - a truly amazing day!

 

 

 

Don't forget - you can still send your emails and letters. All the details are at the top of the blog page.

Cheers,

Tommy

Home baking in Edinburgh

Hiya,

Today I was at the head office of Alzheimer Scotland in the west end of Edinburgh. I got a tour through the building - from finance to fundraising - and got to meet loads of staff. Even had a wee photo with them, as you can see below!

Me and the Alzheimer Scotland team in Edinburgh

They laid on a sandwich lunch for me, with some lovely homebaking from Maureen (who's been following me in the Memory Bus for most of the week) and Tricia. Some really nice words were said and I got a wee bit choked up. That's happened to me a few times this week. It's never got any easier, speaking in public. Still do it though. For my wee mum.

Like I said yesterday, this isn't the end of the tour. Not yet. I want to give carers enough time to get their letters and emails in, so the tour will be rolling on (just not quite so busy!) until at least the end of June. I'd really like to get to some more carers' centres, to more places on the west coast, and to talk to more people. It's been a real privilage to meet so many wonderful people this past week. I'll never forget the man I met in Aberdeen. He was in his mid-80s and he was looking after his wife, who was about 82. He'd been caring for her for 10 years and she's much further on than my mum. But he coped so well and he was so patient. I take my hat off to that man - he's an inspiration, as are so many like him.

Tomorrow I'm back in the dear green place. It's the 21st birthday of Alzheimer Scotland's Glasgow services and I'm going along to their family fun day at Glasgow Green. Hope the weather stays nice and I hope lots of people come along.

All the best,

Tommy

Getting talked about.

Hiya,

Four days down. One day to go. Well sort of. I've been thinking a lot over the past few days. Most carers don't have a lot of time to themselves - I know that well enough.  But I also want to make sure I get as many letters as I can. So I plan to keep 'Tommy on Tour' going for a wee while yet. I'll be home soon and caring for my mum again (and I'm glad - I've misssed her a lot this week), but I still want to get out and meet people. Keep raising awareness and keep collecting letters. Not quite sure how this is going to work yet, but I'll be sure to keep you all posted!

Oh, and I got a mention in the parliament, but more about that later!

I was made really welcome by everyone at the Dementia Services Dementia Centre this afternoon. It's at the Iris Murdoch building in Stirling Uni and June, Eileen and Juanita were lovely. The centre has a library full of books about dementia, everything from textbooks to picture books, and it's open to the public.

 

 

Me and June Andrews at the DSDC

 It was when I was at the centre that I found out I'd been mentioned at the parliament! George Adam, MSP for Paisley, put a motion in yesterday that was mentioned this morning. Time for a wee bit of copy and paste...


*S4M-00252 George Adam: Former Paisley-Mill Worker’s Son Raises Awareness of People with Dementia and their Carers—That the Parliament recognises the efforts of Tommy Whitelaw in raising awareness of the varying forms of dementia and the condition’s effects on families and carers; notes that Tommy is on a 150-mile trek across Scotland, visiting some of the nation’s landmarks to highlight the roles played by those caring for someone with the condition, including Tommy’s mother, a former mill worker from Paisley; further notes the wide support that Tommy is receiving from organisations including Alzheimer Scotland, Carers Scotland, local groups, employers, football clubs and schools, and acknowledges the innovative step of collecting letters from carers during the hike, detailing their experiences.
Supported by: Fiona McLeod*, Bob Doris*, Jamie McGrigor*

What a surprise! Not even handed any letters in yet. It's amazing what a bit of publicity can do. Imagine what it'll be like when we actually get the letters in. I can't wait.

Tommy

Making new friends

Hiya,

I don't think I can describe the impact of the past couple of days. I knew that it couldn't just be me trying to cope with being a carer. But I don't think I realised just how many people are in the same position. I've spoken to so many people since Monday morning. So many people who've told me about how they've been affected by caring for someone with dementia.

I made five new friends this morning: Rose, Grace, Francis, Pearl and Liz. I met them at the Dementia Resource Centre in Dundee and, honestly, I could have chatted to them for hours. We shared our experiences, we laughed and we even cried a wee bit. I was sorry to leave them, but I'm so glad to have met them. I'd also like to thank the staff at the centre for making me feel so welcome.

Me and my new friends

 This afternoon I was in Perth. I was asked to open Alzheimer Scotland's new service at the St Paul's Centre in New Row. I didn't know I was the one meant to be cutting the ribbon! Another great bunch of people.

Tomorrow I'm in Falkirk. I'm seeing Neil Sowerby from the Falkirk and District Association of Mental Health in the morning, then I'm with the Alzheimer Scotland Memory Bus at St Francis Xavier's around lunchtime, off to the Dementia Services Development Centre in Stirling in the afternoon and going to a carers' group in Stenhousemuir in the evening. A busy day, but I'm definitely looking forward to it!

Before I go, here's a wee video of me made from some of the filming that happened on my first day. Hope you like it.



Tommy

Dundee & Perth today!

Hiya everyone!

Another great day yesterday. I was at the dementia drop-in at St Mary's Cathedral in Aberdeen and I met some amazing people. I also heard some truly awe-inspiring stories: loads of folks coping with some really difficult stuff on a daily basis. I take my hat off to them, I really do. They've promised to send me some letters. I hope they do - those are the sorts of stories that our leaders need to read.

Later in the day I was off to Dundee and I got caught in the lovely 'summer' weather. Just as well I've got my 'Tommy on Tour' waterproof!

Me outside Dundee train station.

I was heading over to the dementia lecture at Ninewells. Some lovely ladies there recognised me off the TV and said I had to say something at the lecture. Not used to being a celebrity! Still I said a few words (I was really nervous!) and lots more people took my flyers, which was great. The more letters the better.

Did a quick interview on Radio Tay this morning, before heading over to the Dementia Resource Centre on Morgan Street. The Alzheimer Scotland Memory Bus will be there too. Then it's off to Perth this afternoon. Busy times!

Cheers,

Tommy