Thursday, 31 October 2013

Today Speaking to Senior Charge Nurses Gartnavel General October 31st "getting to Know me "


With thanks to  Christine Tonner Senior Charge Nurse Gartnavel General Hospital  and Con Gillespie , Lead Nurse, Clinical Improvement & Development, Emergency Care & Medical Services for the invite to speak to senior charge nurses at Gartnavel

Con has been over the last months arranging talks for me as art of the rolling out of the “getting to know me “ initiative .I look forward to the opportunity to speak about  my wonderful mum ,the letters I receive ,the people I meet on my tour and Dementia – caring

Thank you


Getting to know the whole person, not just the patient and the illness, is the driving motivation behind a new, nationally developed  resource to improve the experiences of vulnerable adults and their carers in acute hospital settings.
The ‘Getting to Know Me’ document > developed by Alzheimer Scotland and The Scottish Government records personal information about the patient’s likes and dislikes, names of family and friends, and what may be worrying them while they are in hospital.
The information, which will be kept at the bedside during a hospital stay or when attending outpatient services, helps staff to build positive relationships with patients and their carers by allowing them to get a fuller understanding of their life story, preferred routines and specific pieces of information such as what helps them to rest or relax.
Con Gillespie, Lead Nurse, Emergency Care and Medical Services, said “We are confident that this will enhance care and if used properly will facilitate better care for an individual’s needs and reduce the risks of not addressing what they require.”
“It will be helpful if carers ask staff for a copy to complete when their loved one is admitted to a hospital ward, as staff will be able to supply these once wards are stocked with copies.”
Dementia Carer Voices Project Officer Tommy Whitelaw has been invited to participate in the rolling out of this programme across NHS Greater Glasgow and Clyde. Tommy will be sharing his experience of caring for his late Mother Joan with Lead Nurses and staff, to highlight the importance of ‘remembering the person’ and looking beyond an individual’s diagnosis.
Tommy said “Many people simply saw my Mum as a wee woman with dementia and used that as their starting point, failing to recognise the life she had led and could have continued to lead for as long as possible.”
 “‘Getting to Know Me’ is all about recognising each individual’s unique life story, abilities, likes and dislikes, so I am privileged to take part in its promotion in any way I can.”

To view the document, click here >. This can be printed off and photocopied.

Wednesday, 30 October 2013

Thoughts tonight with a dear friend who is in Hosptial


had a phone call today to tell me of a dear friend who is in hospital and very unwell 
A true gentleman and has been behind many of my talks across NHSGG 

Still in a bit of shock on hearing this today ,the  suddenness and how unwell he is 

My campiaign, I hope is about the understanding and kindess of people and this person epitomises that .From the first day we met at a presentation ,coming to visit me at home when caring for mum, and  the kindess when mum was in hospital and passed away and the passion for the best care and for helping a son share his story 

I wish you all the kindess in the world mate and a speedy recovery my hashtag is the kindess of people and that's sums this fine man up so well 

Get well soon mate 

Your friend 


Today meeting at Caledonian University - back to see great friends - talks December - January


I will be popping in to see some of the lecturers tomorrow at Glasgow Caledonian  University to chat about some new talks I have been invited back to do over December and January 

I had the great Honor earlier  this year to speak to students -Nursing - Mental Health and social science students  including a talk in the main lecture theater    

I also have a meeting there to discuss the pre concert reception and exhibition  as part of our "celebration of caring " Concert  January next year 

looking forward to the meeting and future talks 

a wee post from earlier this year 

Thank you Caledonian University Nursing & Mental health Students

As a son who cared for his mum Joan  for five years and would be awareness campaigner , I would just like to thank Caledonian university for inviting me  over the last 3 weeks to speak to the Mental Health and Nursing Student.

A big thanks to  Lecturers  Andy Lowndes Margaret ,Caldwell Jackie Gillespie and Lesley Mcnab and last but not least the inspiring students 

Today was the last of the three talks, I really appreciate everyone taking the time to listen to my wee story about my mum Joan  and the life stories I have collected.

Thank you for the incredibly kind messages  I have received today and over the last few week from these inspiring students .  I wish everyone of them the best in their  journey ahead which ever field of car they work in.


Tuesday, 29 October 2013

Sometimes only a cuddle - smile - guidance from mum or dad can make things better

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 
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 


Nov 29th Carers rights day event Dementia Carer Voices - Alliance Scotland &Scottish Dementia Clinical Research Network. November 29th

Friday 29th November: 12-2:30PM
This year Carers’ Rights Day is taking place on Friday 29th November and the theme is 'rights, advice, support', focusing on ensuring that carers understand their rights and get access to good quality advice that can support them to care.
To mark the occasion, the ALLIANCE’s Dementia Carer Voices project is holding an event for Carers of People with Dementia in partnership with the Scottish Dementia Clinical Research Network.
The main focus of the session will be about highlighting the rights you are entitled to as a Carer, as well as opportunities for you to become involved in research and shape the direction of the Scottish Dementia Clinical Research network. This will be followed by an informal drop in session with opportunities for you to discuss any carers’ issues that you would like to raise
To book a place, or for further information, please contact Laura McCulloch on0141 404 0233 or

For more information, please contact:
Laura McCulloch on 0141 404 0233 or email

Dementia Carer Voices A project outline

Dementia Carer Voices project outline

Dementia Carer Voices

Reaching out to carers of people with dementia and giving them a voice through a “letters campaign” has been part of the awareness raising activity of Tommy Whitelaw, who has experienced first hand what it is like to care for someone with dementia. Tommy has also made a film about dementia and caring for someone with dementia with a view to reaching a wide audience in the UK and beyond.  Read Tommy's blog >.
Dementia Carer Voices builds on the awareness activities from 'Tommy on Tour >' .This ALLIANCE project has been made possible with funding from the Scottish Government.
The ALLIANCE recognises the importance of the Carer Voice in informing future service provision and in empowering carers themselves. To this end the Dementia Carer Voices project aims to
  • Harness the work undertaken to date, particularly by the Tommy on Tour> campaign
  • Develop this by supporting Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland
In doing this, the ALLIANCE will highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and feel enabled to ask for additional help when it is needed;
  • Capture the experiences of carers across Scotland with a view to informing future policy and service provision
  • Raise awareness of the issues around caring for someone with dementia including among health and social care students
  • Empower carers by providing information based on the Charter of Rights and Carer Strategy about caring for someone with dementia
  • Highlight the role of Carers as natural resources; Carers as people with needs; Carers as people with independent live
  • Work with other Carer Organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users. (As a network organisation which includes organisations such as - Alzheimer Scotland, Carers’ Coalition and Age Concern within our membership, we are well placed to undertake this role).
The project will do this through visits and talks to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media;  network events and consider possible future film to raise awareness/understanding.
Read the first issue of the Dementia Carer Voices Newsletter here
Read the second issue of the Dementia Carer Voices Newsletter here
Read the third issue of the Dementia Carer Voices Newsletter here
You can sign up to recieve future updates by clicking here
The project team have put together a short survey to enable them to capture key messages from carers which will be used to influence future policy.
If you have experience of caring for someone with dementia you can contribute and have your say on your hopes and concerns for the future by visiting >
For further information read the Dementia Carer Voices Information Report or contact 
Programme Director Irene Oldfather , 
Project Leas  Tommy Whitelaw 
Policy and Information Assistant Christopher Doyle.

Monday, 28 October 2013

Today meeting Glasgow university School of Nursing lecturers andresearch team


A few weeks ago I had the great privilege to speak at Glasgow UniversitySchool of nursing for nursing lecturer  Jane Joy 

A few days after ,we met again along with one of the senior researchers at the university and had a chat about the outreach - letters - and surveys we have to look at ways we can possibly work together over the next years 

Tomorrow we are meeting again to explore ways of making this a reality .I am really  passionate about representing the words and voices of Carers and hope we can find a way to make this work for all concerned 


A great day today NHS Tayside and then Care inspectorate


I was away bright and early today to Dundee to meet with NHS Tayside patients safety and engagement team 

With great thanks to Morag for arranging  Jill from NHS Grampian and to all who attended. We had a very positive discussion and will continue this in more detail December 4th & 5th when I am back up to do some talks 

I also met with Sam Majumdar a consultant surgeon and great inspiration to me through twitter and now in person .thank you Sam for the kind present - a book on Victorian Dundee and for taking time to meet annd for some great advice

I then dropped by the care inspectorate for a quick chat and to finalize my application to become a lay accessor along with a quick update on the short film I made with them a few weeks ago 

with the inspiring Sam Majumdar  

with Morag -NHS Tayside and Jill NHS Grampian 

Sunday, 27 October 2013

This afternoon meeting Care Inspectorate - Dundee


After my meeting with NHS Tayside patients safety - Carers strategy team in Dundee I will we heading over for a meeting at the Care inspectorate 

The care inspectorate filmed one of my talks a few weeks ago at a staff development day ,So having a wee catch up about that along with the first steps to becoming a lay inspector for the care inspectorate 


This morning meeting NHS Tayside patient safety development team


I Will be travelling through to Dundee on Monday to meet with Morag patient safety development manager Ninewells Hospital along with some other teams who work in acute care - clinical lead OPAC  -the programme director- and Programme manager

I met with Morag briefly a few weeks ago when I was up in Dundee speaking at the care inspectorate development days

we are meeting this week chat in more detail about the Dementia Carer Voices project and future possible engagement

Morag has kindly arranged a few talks for me  in December

Friday, 25 October 2013

Scotland's National Dementia Strategy 2013-2016

Dementia is a national priority for the Scottish Government and the Cabinet Secretary for Health, Wellbeing and Cities Strategy made dementia and older people’s services her pers/Topics/Health/Services/Mental-Health/Dementia/CostingToolonal policy priorities.

Scotland's National Dementia Strategy 2013-2016

Post Diagnostic Support

Everyone diagnosed with dementia from April 1, 2013 is entitled to a minimum of one year's worth of post-diagnostic support, coordinated by a Link Worker. The following documents are designed to support delivery of the relevant HEAT target:
The Informaiton Services Division (ISD) of NHS National Services Scotland also offers information:

Dementia Strategy

Scotland's first Dementia Strategy was published in June 2010. It sets out the work that the Scottish Government and its partners in NHS Scotland, local government and the voluntary and private sectors are doing to improve support, care and treatment for people with dementia, their families and carers.

Dementia Demonstrators Interim Report

Emerging messages from the Dementia Demonstration Sites, have been published in a report by Professor Bob Hudson from Durham University.

Dementia Strategy 2013-2016: Proposition Paper

The Dementia Strategy 2013-2016: Proposition Paper sets out our proposals for the key themes and priorities that should underpin Scotland’s second National Dementia Strategy.

Progress on Implementing the Dementia Strategy

Work to deliver the Dementia Strategy is overseen by the Dementia Strategy Implementation and Monitoring Group, who produced:
The Scottish Government will be starting a period of engagement later in 2012 to inform development of a new dementia strategy, building on the existing Dementia Strategy which focus runs until June 2013. 

Standards of Care for Dementia in Scotland

People with dementia retain the same rights as anyone else in society but the nature of their illness means that they often have great difficulty in protecting their own rights.
There is still stigma and discrimination against people with dementia and they and their carers often feel, with some justification, that they are treated with less respect, dignity and understanding than other members of society.
Standards of Care for Dementia in Scotland were developed which relate to everyone with a diagnosis of dementia in Scotland regardless of where they live, their age, the supports they receive or the severity of their illness.
This includes younger people, people with a learning disability and people with rare types of dementia. They apply to people living in their own homes, care homes or hospitals, especially general hospitals.

Promoting Excellence

Promoting Excellence, a skills and knowledge framework for dementia, details the knowledge and skills all health and social services staff should aspire to achieve in relation to the role they play in supporting people with a diagnosis of dementia, and their families, and carers.
NHS Education for Scotland and The Scottish Social Services Council are delivering the Promoting Excellence implementation plan, which includes training 300 Dementia Champions by 2013:

Improving Diagnosis of Dementia

Diagnosis of dementia is important as the diagnosis is the gateway to information, support, care and treatment for the person with dementia, their family and carers. A target to increase the number of people with a diagnosis of dementia was delivered across Scotland.
It was replaced by a new standard to maintain the proportion of people with a diagnosis of dementia on the Quality and Outcomes Framework (QOF) dementia register and other equivalent sources.

Improving Support for People with Dementia and their Carers

The Cabinet Secretary for Health, Wellbeing and Cities Strategy has indicated that she intends to introduce a national commitment from 2013 of a guaranteed minimum of a year's post-diagnostic support, coordinated by an appropriately skilled link worker.
This commitment will also help drive improvements across the whole system of care.

Improving dementia care in general hospitals

The Chief Nursing Officer for Scotland is leading a programme of improvement activity with NHS Boards and others, into the care of older people, including those with dementia at any age, in general hospital care settings. To complement this, Healthcare Improvement Scotland are undertaking a programme of inspections into these areas of care.
The Scottish Government is supporting Alzheimer Scotland in appointing a dementia specialist nurse in every NHS Board in Scotland, to advise on change and improvement across their Board area.

Today attending Carers Scotland annual carers summit Glasgow City Chambers


this morning Irene Oldfather and myself  will be  attending Carers Scotland annual carers summit Glasgow City Chambers

the theme of the summit this year will be welfare reform

The theme of the event is welfare reform.  Our keynote speaker will be Nicola Sturgeon, Deputy First Minister who will be joined by experts on welfare reform and carers.



Wednesday, 23 October 2013

next Friday Invited to participate attend Annual Review 2013 of NHS Greater Glasgow and Clyde.

Great  privilege and opportunity to share experiences and ask some questions 

you can help by  sending  me any questions or experiences to 

I am writing to invite you to participate as a patient representative in the forthcoming Annual Review 2013 of NHS Greater Glasgow and Clyde.

The review will take place on  and its purpose is to allow the Scottish Government to assess local NHS performance in delivering services and meeting national targets throughout 2012 and 2013.

You will have the opportunity, along with other patient representatives, to meet with Mr Michael Matheson, Minister for Public Health  and to share your experiences of the care and services provided by this NHS Board.

Caring For a Loved One with Dementia ………….

Caring For a Loved One with Dementia ………….

I cared for my amazing wee mum for nearly five years and like so many others faced countless struggles on the way. This campaign has allowed me to meet amazing, loving, caring people all across the country going through and supporting others with similar experiences.
I want use the information, thoughts and opinions from all the carer groups, professionals and families I meet and share these with the people who can make a difference to the lives of people affected by dementia. My story is not enough you can help and be part of this opportunity to describe living with and caring for a loved one with this condition.
I also want to promote the good services that already exist in the hope it encourages other to go and get the help already in place and they deserve.
Please help. Get in touch share you’re story tell me about services in place that bring comfort and help to you, lets work on the negatives and promote the positives and celebrate the good help and service we have so others can know about and access them.
When I was caring, I did not know what help was available and even when I did was uncomfortable with asking for help,I don’t want others to live the way we lived, I want them to know about  help they can get and let them know from a carers’ point of view the difference a little bit of help and understanding can make to your life. 
There are many things I personally wish where in place to bring help and comfort, but for me not knowing or having access to help that already exists is a tragedy in itself


Next Friday Speaking Surgery & Anesthetics Conference Nov 1st "sharing good practice"


with great thanks to Margaret Connolly Lead Nurse Specialist & Advanced Practice-practice Development GGC  for inviting me to speak at the  Surgery & Anesthetics Sharing Good Practice Conference 1st November 2013 Beardmore Conference Center

I look forward to speaking about my wonderful mum ,dementia ,caring the letters I receive and the people I meet on my tour

thank you


Tuesday, 22 October 2013

Where memories go Sally Magnussons memoir a familys love for a motherand manifesto for social change

I had the great  privilege to be interviewed by Sally Magnusson just before I left for my walk to collect life stories and a few weeks after mum passed away Sally once again interviewed me at  home for Documentary - medical matters "who cares for the Carers " based on the letters I receive and caring for mum 

Sally has written a memoir available this Febraury " where do memories go " a families love for a mother - and a scaring manifesto for social change 

There is a Facebook page as below to learn more about Sally and the story 

I met Sally as guest on her programme one and I now count  Sally as a friend 

For the love of mums 


Great honour - film of my talk care at inspectorate development day tobe used training - awareness


Last month I was a guest speaker over two days at the care inspectorate staff development seminar 
After my talk about my wonderful mum - dementia - caring - the letters I receive and people I meet on my tour I was approached and asked if my talk on the second day could be filmed 

I was more than happy to agree and earlier today Irene Oldfather and myself met with heather a dementia lead from the care inspectorate to chat about a few things including the filmed talk 

I am happy to say the 45 minute film with be used by the care inspectorate to share with staff and others for training and awareness 

 The film will be available to share publicly early January on the care inspectorate web site 

Thank you for the opportunity to speak as a son and for using our story to raise awareness and understanding 


A good day today - a good meeting on my way back from London and I hopegood news soon


Back on the train to Glasgow from London after a very good meeting I left early this morning to help with a presentation on a wee idea - project we have been working on 

I can't say to much at the moment but feel the presentation and meeting went well and hopefully good thing will come of today 

Was great to have the opportunity and be involved so thank you to all who put this idea together and for the kindness and interest from all we gave the presentation too 

Today felt like a good day most of it on trains I have to say. But the bit in the middle felt special and proud to have been involved 


A quick stop in London then back on the train to Glasgow  

Today - meeting in London a possible new Project awareness UK


I am travelling to London today ,in fact on the train Just now to attend a meeting for a possible new project for 2014 .A project that I am very excited about and fingers crossed might happen

So a long day on trains got the 8am train this morning arrive in London lunch time for a 2pm meeting then straight back to Euston for the train home to Glasgow

I can't at this time say to much about the idea - project but with some luck if this happens it will allow me to raise awareness to more people than ever before

So fingers crossed and hoping for a good meeting and day


Monday, 21 October 2013

New Awareness talks added 2013 /2014 the awareness campaign goes on

September 2013
19th meet - reporting Cab Secretary Health Alex Neil Parliament
25th - Speaking Royal Alexandria Hospital.
26th - Attending NHSGG&C FTFT Awards. Nominated NHS ambassador award

October 2013

1st - Awared the Age Scotland  influence and Campaigning 2013 Jess Barrow award 

2nd - Speaking  Alz society Cardiff conference via Sarah Rochia Older Peoples Commissioner Wales.
3rd - Speaking at Hannah Mackay Productive Ageing Summit.
7th - Speaking to Lead Nurses Cohort 12 Conference.
8th – Speaking in Leeds at Mount hospital

9th – Speaking at NHS England Conference in Leeds.
15th- speaking Royal Alexandia hospital
17th – Speaking to Carers Link.
21st - meeting care inspectorate (future engagement )
21st- meeting community nursing NHS Education Scotland
23rd- Speaking at SPAEN AGM Coatbridge College.
24th London meeting re awareness
31st Speaking Gartnavel General

November 2013

1st - Speaking at NHS Conference Beard-More Hotel.
6th – Speaking at Victoria Infirmary.

5th - Speaking Glasgow Royal Infirmary
6th - Nominated for Scottish Health Awards (Evening Event).
8th - Speaking at Monklands Hospital NHS Lanarkshire.
11th - 14th - 4 day tour for NHS Highlands (6 talks over 4days).
18th - Shortlisted NHSGG chairmans award
19th- Speaking Glasgow Royal Infirmary
21st & 22nd - Person Centered Care at SECC. Workshop day 1.  Speaking day 2 for H.I.S.
25th - speaking nursing conference critical care Livingstone
26th -Speaking Glasgow Royal Infirmary

December 2013

03.12 - 05-12 3 day tour for NHS Tayside.

January 2014 

20.01 Letters life ,love stories concert & exhibition

06.02 aberthay Univerity 
24.02 - 28.02  4 day tour for NHS Grampian 


21.03 QMU University Edinburgh 

talks January to mid September 2013 

17.01 Victoria Infirmary
05.03 Southern General Hospital
09.04 Southern General Hospital
16.04 Southern General Hospital
23.04 Southern General Hospital
30.04 Southern General Hospital
11.06 Glasgow Victoria Infirmary
02.07 Vale of Leven Hospital
03.07 Royal Free Hospital London
09.07 Vale of Leven Hospital
01.08 Glasgow Royal Infirmary
27.08 Glasgow Royal Infirmary
03.08 Glasgow Royal Infirmary
17.09 Glasgow Royal Infirmary

Conferences / Other
22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council DA Event
21.04 Improving links in Primary Care Meeting
01.05 ALLIANCE Annual Conference
30.05 Person Centred H&C Conference
20.06 RCN Scotland Board
21.06 NHS GGC Releasing Time to Care Event
04.07 Health Education East of England Staff Development Day
08.08 NES/ SSSC Dementia Programme Board
10.09 Care Inspectorate Staff Development Day
11.09 Care Inspectorate Staff Development Day

16.02 Glasgow Caledonian University
19.02 Glasgow Caledonian University
12.03 Glasgow Caledonian University
04.06 Dundee University
05.08 Dundee University
08.08 Dundee University
17.09 Glasgow University

05.03 Cardonald College
11.03 Cardonald College
15.03 Ayr College
28.03 Reid Kerr College
07.05 Reid Kerr College

19.02 South Ayrshire Carers Dementia Awareness Day
26.02 ‘Making Life Easier’ Event Murrayfield
14.03 Lockerbie Carers Dementia Group
22.03 SDCRN Annual Conference
19.04 Alzheimer Show London
19.04 Camden Council Dementia Awareness Event
01.05 ALLIANCE Annual Conference
02.05 North Ayrshire Council Carer’s Strategy Event
09.06 BBC Radio Scotland Sunday Show Interview for Carer’s week
18.06 Presentation to Sainsbury’s staff Prestwick
20.06 ALLIANCE Involvement Networking Event
11.07 Glasgow North East Carers
31.07 Glasgow North West Carers
04.09 Cochrane house residential care
02.02 Scottish Liberal Democrat Health Conference
20.04 Scottish Labour Party Conference
02.05 North Ayrshire Council Carers’ Strategy Event

This afternoon meeting Dr Janice Kelly NHS education for Scotland


Monday afternoon after we meet with the care inspectorate, Irene Oldfather and myself will be meeting with  Dr Janice Kelly nhs education for Scotland and some colleagues to chat about Dementia Carer Voices and some possible future engagement

We will be discussing among other things of listening services for carers of people with dementia - along the lines of the CCL model – I am keen to get involved with the development of this project

We met with Dr Janice Kelly last week and I look forward to taking our last discussions forward

You can get more info on NHS Education Scotland at the links below

earlier today - meeting with Care Inspectorate Dementia lead

Irene Oldfather and myself had a very positive meeting earlier today with Heather a dementia lead with the care inspectorate

we had good discussion covering many  subjects along with a sneak preview of my filmed talk from the carer inspectorate staff development day

the film once ready will be available on line via the Care inspectorate web site and used by staff

very grateful and honored for my talk to be used so a big thank you


Alliance - Viewpointon the Scottish Government’s Learning Disability Strategy, “the Keys To Life”: -Link to Piece

Alliance - Viewpoint on the Scottish Government’s Learning Disability Strategy, “the Keys To Life”:  
by Chris Creegan, Chief Executive of the Scottish Consortium for Learning Disability (SCLD)

Saturday, 19 October 2013

I just don't know what to do with myself weekends,night time the loneliness inside

just don’t know what to do with myself

I have two years to work on my Dementia Carer Voices project, based on my Tommyontour campaign that I started from my bedroom whilst caring for my wee mum.  A campaign started with a broken and lost heart.  I am grateful for the opportunity to continue to improve and increase the awareness work done from home and during my respite hours.  I am thankfully very busy with some I believe good projects and opportunities to both be involved in and raise awareness.

Its Saturday today and like every other weekend and evening since mum passed away I just don’t know what to do with myself.  My mum over the last five years became my best pal we shared the struggles and the joy.  The truth is each other was all we really had.  I Knew I would miss mum but I never thought it would be this hard this often.  5 years of loneliness, isolation and social exclusion has knocked the stuffing out of me, the thing is I could take it when mum was here; we had to in order to get by.

What happens when in need of long term care or caring that as a society we too often look the other way.  Dementia brings so many challenges on its own, we need to do more to tackle all the other struggles that can play such a prominent part.  I know how to campaign, well I hope I do, I just don’t know how to fit back into everyday life.  My life before caring was constantly travelling and social occasions, now I have no clue, and really don’t know where to start.  The loneliness we faced over the last 5 years was in many ways a rehearsal for how lonely life is without my wee pal, my mum and like every other weekend or evening I just don’t know what to do with myself.

My mums name was Joan ,my Mum Had Dementia - our Story 9 Short Films

Tommy’s speech, providing a carer’s perspective,  on the theme of “ No – one ever asked   ” highlighted the transformational impact that ...