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