Thursday, 26 February 2015

Monday Speaking HNC students Cumbernauld College


With great thanks to Alex Murphy lecturer at Cumbernauld College for the kind invite to speak to HNC students who attend and are out in placement at the moment 

I met Alex a few weeks ago when I was speaking for Joyce Cavagh a senior lecturer at the Open University 

Alex has kindly invited me to speak to students from 11am - 1pm on March 11th 

My Aunt Margaret and Uncle Joe stay in Cumbernauld and a few of my cousins will be coming along to the talk after the talk  I will then be going over to visit  so will be a very emotional day for me I think 


Wednesday, 25 February 2015

Caring For a Loved One with Dementia - are you a carer ? Have you caredfor a loved one - can you help


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 Carers -  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
You can share you story - experiences good or bad via


Sunday, 22 February 2015

Today Speaking The Future of Mental Health Nursing conference 2015 #FutureMHN


With great thanks to Liz Read  @liz89read  for the kind invite to speak at The Future of Mental Health Nursing conference 2015 

I am very honored to be invited and Look forward to attending ,learning and speaking 

I will post more details once available 

The Future of Mental Health Nursing conference 2015 
We are holding the inaugural #FutureMHN conference on 24 February 2015 at the Indigo O2, London.  The event aims tobring together 500 mental health nursing students to celebratethe success of mental health nursing innovation and research, to inspire future leaders, and to support effective networking.
Each university in England running the pre-registration Nursing - Mental Health programme has been invited to send students and lecturers; providing an unparalleled opportunity for networking and hearing the latest developments, experiences and thoughts on a wide range of topics including:
• National developments in Mental Health
• Mental Health is everyone’s business
• Using social media
• Developments in Mental Health education
• Challenges for public Mental Health
• The role of the Modern Mental Health nurse
• Research in Mental Health
The programme will be a mix of speakers, discussions, entertainment and networking. This is a fantastic opportunity to share different perspectives on the future of mental health nursing. 
On the day: The event will commence at 10:00 (arrival/registration starts at 09:00) with the days programme concluding at 17:15 followed by a reception and a chance for more networking. 
Registration: The event is free to students, but you need to registerWwill need your name and confirmation of your attendance; this should be sent to the following address:
final programme will be available on the day.
The event is organised by the Department of Health in partnership with the University of Greenwich, Oxleas NHS Foundation Trust, NHS England, and Public Health England.

Friday, 20 February 2015

Sir Peter Fahy Chief Constable Greater Manchester Police writes about his personal experience and GMP carer support group


With great thanks to Sir Peter Fahy Chief Constable Greater Manchester Police for taking time to write  this very personal Guest piece along with the story of the GMP carer support group 

A few weeks ago I was so very honored to be a guest speaker at the group ,I met so many kind people and think this is such a wonderful initiative

Thank you Sir Peter for sharing and for the supporting  carers across Greater Manchester Police 


Like many people I only became interested in the issue of dementia when a member of my own family ( my mother ) was diagnosed with the illness. This started a journey which many carers travel on, a journey of some pain and confusion, sorrow , impatience, challenge and discovery and yes some laughter and lots of love. To be fair most of the people we have dealt with have been wonderful and very caring but dementia turns upside down many of your existing assumptions and ways of doing things as you go along the journey of switching from your mother caring for you to your mother being the one who needs caring for and the one who is vulnerable.

I have learnt a lot from my mum over the past few years of dementia and in particular that there is a gift to living in the moment. We spend so much time worrying about what has happened in the past or what is to happen in the future but my mother just lives in the present second and has no regard to what happened five seconds ago. I know that there are different forms of dementia but thankfully my mother is just as gentle, loving and funny as she has always been.

As a chief constable I am also aware of the needs of our increasingly aging population and GMP has worked with the Alzheimer's Society to become a dementia friendly organisation. We deal with many calls involving those suffering from dementia who may be confused and vulnerable. We deal with many cases where someone has perhaps not been seen for a few days and officers face the difficult decision on whether to break in or not. In these cases information about that person's relations and whether they may be staying elsewhere or even in hospital is very useful.

In general access to information is one of the key issues facing police and indeed others in the front line of the public service - even simple information like the code to the key box when we suspect that someone may have fallen inside their house. From my own experience as a carer it is frustrating that even different parts of the NHS in the same town can't seem to share basic information. We need to find a way to reassure the public that we respect their confidentiality but in most cases they get a poorer service because agencies are not sharing information. We need systems which allow the public to consent to their information being shared when there is a crisis.

Dementia has a huge impact on our society, affecting more than 800,000 people directly but many more indirectly such as family members, friends and carers. GMP recognises that officers and staff with caring responsibilities need supporting when finding it hard to balance work and family responsibilities.  In September 2014 a Dementia Carers Group was set up to help staff in a number of ways.

The purpose is to support by providing useful information and by gathering people together who are facing similar challenges we will be able to learn what carers need from us as employers. It can provide an opportunity for caregivers to share their feelings, ideas and information with others in the same position. To provide immediate and practical support for carers we have developed an intranet page dedicated to carers of those living with  with dementia. Increased knowledge of dementia within GMP will also assist officers and staff who are interacting with people living with  dementia within our community.

For the initial meeting in September, we invited representatives from Admiral Nurses and the Alzheimer's Society to talk to the group about the support that can be offered by them.  Members found it very helpful and also expressed how useful it was for them to meet and talk to others in the same situation. As a result of the first meeting Admiral Nurses are offering carers support surgeries on police premises the first one was 29th January and all places were taken and a second set of meetings is arranged for 22nd and 23rd April; further such surgeries will be offered on a quarterly basis. GMP is also arranging for the Alzheimer's Society to run their popular CRiSP1 sessions which are four sessions aimed at family members and friends of those recently diagnosed with dementia. These will be starting in the next couple of months. 

For our second meeting in February we had a Community Safety Officer from the fire service giving fire safety advice and we invited Tommy Whitelaw to speak about the work he is doing in Scotland to raise awareness about dementia and bring organisations together to provide consistent and effective support. Tommy spoke very personally about his experiences caring for his mother Joan and his feelings of despair and isolation. It was a very powerful and moving input and feedback from the event includes the following comments from carers:

“I just wanted to say thank you very much for arranging yesterday’s carers meeting.  There was a lot of information shared and whilst Sue’s presentation was very useful – Tommy’s presentation was very powerful and I know I am not alone in saying how much it struck a chord”

“I just wanted to let you know how much I enjoyed yesterday's session.  Tommy talked about things that I think we all understood and what a powerful way he delivered his message.”

I personally found Tommy's input very powerful and he spoke with great love and compassion about his mother and their journey. I know this touched everybody who attended our meeting and I'm grateful to him for giving up his time to share his story with the group.

Sir Peter Fahy Chief Constable Greater Manchester Police 


Dementia -we may not have a cure at this time,there is much you and Ican change while we wait


Dementia alone brings enough to the table, a journey without the best of help, understanding advice, friendship and opportunities is I feel an impossible task.

Firstly we should be allowing all the chance to live, love and cherish every moment they can. For mum and I and too many others it’s not like that. A big part of this comes down to understanding from within and the understanding of family, friends and people who become involved in our care.

I am grateful for people who understood the challenges we faced, we needed them and more like them should be encouraged, the ones who added no value only increased our anxiety loneliness and voice. We can’t at this time cure dementia that is the challenge for researchers across the world, but why did we like so many others become so lonely and isolated - we can cure that surely.

My mum never deserved to be lonely she was too kind and caring to others for it to happen. The phone stopped ringing, the door stopped knocking and the chances to have a better life decreased. I remember one Saturday night hearing the sound of a taxi and people coming home from a good night, the laughter and the joy – a reminder of what was missing from our life and house. For the previous 3 years I had only left our house at night 9 times and those were to do talks and I had switched my respite hours from day to night to attend.

How could this mum who cared for so many and even a son who had many friends be left so alone and lost? Why do so many people who share their stories face loneliness isolation and a lack of understanding? Surely as a society we can change this. I sit today lonely, recovering from a struggle, missing my best friend, in many ways angry at dementia but just as angry at the things we can cure. It does not take strategies or policies to cure much of this. It takes understanding, kindness and always remembering the person, the life they led and should still be allowed to lead. As dementia over time took away o all of my mum’s memories, why did others forget as quickly?

If we keep dementia as a whisper, if we forget the greatness of people then we leave them no chance ,while the researchers look for a cure we should all be curing the parts we can - Loneliness, isolation, understanding, respect and dignity, you don’t need a researcher for them.


Thursday, 19 February 2015

They say time is a great healer, I am not so sure

They say time is a great healer, I am not so sure. After five years of caring for my mum and the journey we faced towards the end I wonder if the concept of recovery can ever truly apply to me.

The life of a carer can be a lonely one. In my case, our  journey was characterised by much isolation and loneliness, even despite all of the activity of my awareness campaign. I often wonder what happens to the broken hearted? What happens to people who have cared for a loved for much longer than I did? How do carers fit back in?

If it wasn’t for the on-going work I do which soaks up my time and energy and the kindness of people who support my campaign then there would be nothing.

Often we lose friends the longer we care and when we lose a loved one we also lose part of the direction and purpose of our lives. As the caring journey progressed, we lost contact with everyone apart from my mum’s sister and family and one or two friends. My mum was also my best pal and the loneliness and isolation I experienced at the time has only got worse since her passing. I am lucky in many ways for the kindness to my campaign but as lonely as I feel when I walk in this house I feel for others who will have no one at all.

I want to challenge this as part of my campaign. We can’t cure dementia as of yet, but we can address loneliness and isolation - a tragedy that we as a society can all help fix .If you know someone who might need a friend who is lost and alone ,you can change that. It does not take strategies or policies just a bit of time and thought.

But for the kindness of people who support this campaign I would have little. I long for the day we should not need a campaign to take away loneliness


Guest Post - Jackie Kerr writes about her role providing post diagnostic support within NHS Lothian

Big thanks to my friend Jackie Kerr from the Memory Clinic at St Johns Hospital for writing a blog piece for my Tommy on tour  and Dementia Carer Voices. site 

  You can follow Jackie on Twitter @jackie311009 . 
Thank you Tommy for the opportunity to tell you about myself and the role I play in providing post diagnostic support within  NHS Lothian. I have worked for the NHS for 24 years, the majority of my working experience has been with in wards. I have always worked with people who have a diagnosis of dementia at different stages of their illness. I started a new job in February 2014 with in the memory clinic providing post diagnostic support for all stages of the illness. This is a new and developing role which I really enjoy. The work we do is person centred and each case is tailored to each individuals needs. My aim is to mirror the 5 pillars and adapt this for every person diagnosed with dementia for all stages of their illness.

The people who are referred to our service we arrange to see them in their own home as we feel this is a more relaxed atmosphere. We work with the person and their family/carer. We will signpost to other services such as Occupational Therapy, Carers of West Lothian and Alzheimer Scotland to name a few. We also have direct access to Senior Nursing Staff within the Memory Assessment service should we require any advice or support in respect of the persons management plan. We discuss and explore the book ‘Living well with dementia’ this is provided in an information pack that the Consultant Psychiatrist issues to the Person at the point of diagnosis. There is also a DVD with the book that people and their families can watch at their leisure. We support the person to maintain their mental well being and refer to cognitive behavioural therapy if required. We support the client to maintain a good level of general health and develop a living positively with dementia approach. We support the person to remain as independent as possible with minimal risk.
We look at the persons hobbies and interest and we discuss with the person ways they can carry on living a full life. We look at various activities within the community. West Lothian Council funded activities which include Xcite activities. These activities can vary from keep fit classes for 50 plus to tea dances. We also look at other activities such bowling and football. We may refer to services like the Red Cross or golden years to help with accessing venues or a befriending/companionship service.

We recommend the benefits of Dementia cafes run by Alzheimer’s Scotland and we support the person in accessing these services. We discuss the peer support group at St Johns hospital and can refer directly to this service. We also look at the benefits of carers of west Lothian who provide various services including support groups for carers. There is also an online community support group run by Alzheimer’s society. We also refer people to cognitive stimulation therapy which is run by the nursing staff from the Older People’s Day Services in St John’s Hospital.
We give information and encourage the process of Power of Attorney. We explain the importance of power of attorney and how this can benefit in the future. We promote discussion around who they would like to appoint as power of attorney. We explain that power of attorney is not just for financial decisions and discuss their wishes and choices for future care needs.  We ensure that the person with Dementia and their families/carers are aware of the help that Carers of West Lothian can provide with this however respectful that people may wish to visit their solicitor or have their families complete this for them.
Having met with the person and their family/carers over a period of time, this allows us to build a therapeutic relationship with them. We work in a person centred approach to support them to plan for their future. We discuss the client’s hopes and wishes; we also discuss the family/carers hopes and wishes for the future. We use the ‘Getting to Know You’ document to highlight the client’s future plans. This document covers important information and wishes made by the client and the document is given to the client to keep. This document includes:


Who knows me best?
What family and friends are important to me?
My life so far (this is looking at life story information)
What food and drink do I like?
How do I sleep and what is my usual sleep pattern?
How do I manage my medication?
What are my Personal Preferences? eg: Do I like a bath or  shower?
This document also contains important information regarding what the persons mobility difficulties are, if any.  Do they have any communication difficulties, and if so how best can we communicate with them?  Things that are important to the person and what they would like care professionals to know about them. There is also additional information within the document which can be used for their wishes and plans for future long term care; this will also include any palliative care preferences.

Thanks for reading my blog, You can now view my 8 short flims here!
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Wednesday, 18 February 2015

Can You Help Build A Make A Difference Pledge Wall Across The Country ?


Can You Help Us Build A  Make A Difference Pledge Wall Across The Country ? .
Our Make A Difference Tour started last year with 187 talks across Hospitals ,Universiies,Colleges,work places and in our commuinites 
And our tour continues this year picking up where we left of at the end of 2014 

My hopes and dream is to have pledges from every town every city across the country ,letting people know that they matter,sharing the great passion of people that "no matter where you work no matter what you're role you / we will play our part in making a difference to the lives and experiences of the people we meet "

Over this tour I have had the great privilege to meet so many amazing, caring,inspiring people IN PERSON on my tour across the country on twitter via our Dementia Carer voices Blog and my own TommyOnTour blog. You can read the  3000, personal pledges  made to date below 

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

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

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


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

                             The Amazing People and 3000 Pledges (and Counting )

January 2014 
We began the campaign by asking “What does caring mean to you?”
19.02.14 NHS Fife
(08 -10).04.14 NHS Dumfries & Galloway 
3/4.06.14 NHS Conference
27.06.14 BCDA Birmingham
NHSAAA The People The Pledges The tour - 13 talks July - August 

01.09.14  Teesside University
13.10.14 More Pledges
03.11.14 Online pledges
07.11.14 Burton Hospital
13.11.14  Pledges of the week
24.11.14 The Retreat York
15/16.12.14 Norfolk and Suffolk


Thanks for reading my blog, You can now view my 8 short flims here!
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

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 ...