Are you a carer?





Please watch my short film, which includes families and carers reading from the letters they sent me.






If you would like to share your story or make a persoanl pledge to make a difference please email tommy.whitelaw@alliance-scotland.org.uk

Monday, 29 June 2015

Opportunity to have your say on how care and support services are organised

When:
15/07/2015 at 01:00pm 
Lots of people across Scotland access care and support services, like home care, support workers, 

short breaks, day services and advocacy.

Procurement is the word used to describe the way that Councils arrange and pay 


for services to be put in place and these are then delivered under contract 

by voluntary organisations or private providers.

The Scottish Government, together with appropriate public and private organizations, is currently 


considering amendments to the guidance that councils and other public bodies can use when buying 
these services. These amendments are mostly because there will be some changes to the rules 
about procurement. The guidance provides advice to Councils about what they should think 
about when buying care and support services.

As part of our involvement in this process we would like to gather the views of:

• People who use support and services – particularly if they have been involved 


in helping a Council make a decision about buying care and support services.

To that end the ALLIANCE is holding an event together with the Scottish Government 


on Wednesday 15 July to give people who use support and services the opportunity to have their say.

 The event will consider how people should /could be involved in the process in the future 

and how services are then arranged.

The event will take place in Glasgow at the Europa Building, 450 Argyle Street 


from 1:00 (for 1:30 start) – 4pm

Lunch and refreshments will be served on arrival 

and travel expenses by public transport will be covered.


For more information, please contact:
Christopher Doyle on 0141 404 0231 


or emailchristopher.doyle@alliance-scotland.org.uk


Sunday, 28 June 2015

Guest post - Glen Merrilees - A Poem 'CARERS' -My door was always open But no-one came to see

Hi 

With Great thanks to my dear friend,MH campaigner and Poet Glen Merrilees @GlenMerrilees for the beautiful poem below 

Glen has sent beautiful and honest poems before capturing my own life and feelings betters than I can and that I have always proudly shared 

You can follow Glen on Twitter  @GlenMerrilees and I encourage you to support his campaigning work poetry and  films  

Thank you Glen 
Hi Tommy, firstly you were brilliant the other day, the passion shone through. I was looking at some of your posts on twitter yesterday and I read the article you wrote for the newspaper This inspired me to write the attached poem, hope you don't mind but I tried to write it from your perspective

Glen Merrilees 


CARERS

 

My door was always open

But no-one came to see

The battle we were fighting

My poor mum and me.

 

There had been a diagnosis

Dementia was It’s name

A ton weight dropped upon me

Fate had changed the game.

 

I thought, perhaps I’d manage

And it would be okay

But everything was turned around

Worsening each day.

 

The Lady who adored me

Would slowly drift away

Routines like hearts were broken

Snowdrops never stay.

 

There’s a lack of understanding

Friends excuses vague

A lack of education

This is NOT the plague.

 

We need some understanding

Education is the key

How many other carers

Have climbed that hill like me.

 

The little things mean everything

This illness is no game

My mum was just a patient

They never asked her name.

 

Left to fight the battle

We faced it on our own

Look further than the illness

My mother’s name was Joan.

 

We had to climb the mountain

As we had no other choice

It’s time they started listening

Us carers have a voice.

 


Friday, 26 June 2015

Guest Post - Remembering The Love Story - Deborah Hamilton, Community Links Practitioner

Todays guest post comes from Deborah Hamilton, Community Links Practitioner for Health and Social Care Alliance Scotland based at the Green Practice in Govan Health Centre.  You can follow Deborah on Twitter at @debsmakeslinks 

Let see what she has to say….

This reflection is about love and kindness and dedicated to Tommy and his mum Joan.

Not long after I started in practice I got my first referral for a family struggling with the caring role of their fathers fairly advanced dementia. Working with carers and indeed condition of dementia, was new to me so I had found Tommy’s input during our Links worker induction both moving and really helpful in preparing me for the approach required. Little did I know just how helpful it would be.

One of the GP partners referred a lady in her 40’s who was living and caring for her elderly parents, her Mother was now house bound due to a number of long term conditions and her once very active father had developed dementia around six years prior. The family had had previous bad experiences with staff coming into their home following referrals by their GP and this had led to a mistrust of any agency other than their GP team, who they had worked with for many years.  She called them to explain my role and sure enough due to their GP endorsement and my being considered just another member of the team, the family agreed for me to visit them at home.

It was a very complex situation for the family with a history of real difficulties and as Dads dementia had developed they had been become even more isolated and fearful he would be removed to a care home, which was not his wish. Unfortunately there could be times when he would become verbally aggressive and he had previously attempted to assault an outside agency when he felt threatened. It was understandable that his family were reluctant to work with services and I had to visit every week for a number of weeks building trust and getting to know them and their experiences.

I had of course come with a carers’ hat on and so much of the initial discussions had been with Mum and daughter who were very much in need of support and onwards referrals. We spent time discussing and preparing them for the range of statutory and voluntary services available to them but I became keen to speak directly with Dad. During visits he would sometimes stay in the back room and I began to get the sense he did not feel valued enough to be contributing to the discussions. On my third or fourth visit he came in when he heard discussions about home care arrangements and respite options. He was agitated and his wife and daughter were worried he might lash out. I suddenly remembered Joan, not just Tommy the carer, but Joan the lady living with Dementia. The lady whose love story had brought me to tears, the lady who still deserved to have her favourite shampoo used, her dignity maintained and her contribution to her community known. My attention turned to this scared and forgotten man in front of me and I knew instantly that kindness was, as ever, the order of the day. I think he felt this and after some important eye contact and addressing him directly, he asked if he could meet me on his own in the kitchen. It became apparent that during all his contact with services over the years, his medication reviews etc. he had not been met on his own and asked ‘what matters to you?’ He might have had dementia but he still had rights and thoughts on how these might be met. He told me he was too embarrassed to allow his daughter to wash him and that his wife was becoming too frail so he had remained unwashed for a long time not having had the opportunity to tell someone this sensitive information. I held his hand.  He wanted to maintain his dignity and that of his families but was sacred of people now coming into his home after so many years in isolation. He also told me that he had once enjoyed long walks but could now only go out with his daughter after he had lost his way home shortly after his diagnosis. His daughter is a lovely chatty women and he wanted to walk in silence, as he had done to maintain his wellbeing through years of marriage and raising a large family.

Using the trust of the GP team and the Links approach over the coming months the family became engaged with Carers services. We arranged for a respite carer to take him on long walks but in the silence he preferred whilst his wife and daughter had some time to themselves.

Within a few months he took ill and was hospitalised before being moved to a specialist care home for people with dementia. It was not quite the outcome we had all hoped for but in the end, in this situation, it had become the best option. Perhaps if he’d had a link worker 6 years ago when he was first diagnosed things might have been different. I’m very glad that I got to know this fine gentleman and what most matters to him and I thank Tommy and Joan for their love story and how it kept me connected to what matters most.

Tuesday, 23 June 2015

Speaking Canterbury Christ Church University July 22nd



Hi 

With great thanks to Matt Gordon MH Degree and Niall McLaughlin Professional Lead for Mental Health Department of Health, Well-Being & Family Canterbury Christ Church University
For the kind  invite to speak to students on July 22nd 

I have to thank Matt a MH Degree student at the University for his amazing effort to make this happen ,I am so very honored to be invited and look forward to attending,meeting everyone and speaking 


Tommy 

                                   
       

Monday, 22 June 2015

Speaking - Shrewsbury and Telford Hospitals ‘End Of Life Care ‘ Conference November 5th


Hi

With Great thanks to Jules Lewis @JulesLewis6  End of Life Care Facilitator Royal Shrewsbury Hospital for the kind invite to attend and speak at the Shrewsbury and Telford Hospitals ‘End Of Life Care ‘ Conference November 5th 2015

Jules and I are good friends on twitter and I am so very honoured to be invited  other good friends from twitter at the hospital who are involved with the Conference – Nick Holding Quality Improvement Manager @wolvesboy, Elin Roddy Consultant Physician & Clinical lead End of Life Care @elinlowry, Sarah Bloomfield Director of Nursing and Quality @SBloomfieldNHS




I hope you can attend the day and I will leave the last quote to the wonderful Jules

“I believe I have the best job ever, I am in such a privilege role that can influence change to improve end of life care for all end of life people and their families/carer. I work with some amazing people and have a great network of likeminded people on twitter you, Fiona and many more,We have done some great work already. However, still have a long way to go, we don’t always get it right every time and that is the aim!"

Best wishes,
Jules Lewis
End of Life Care Facilitator
Stretton House
Royal Shrewsbury Hospital


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Thursday, 18 June 2015

Friday - Speaking Inshes Church Inverness Mid Day - All Welcome

                                                DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg
Hi 

With great thanks to Margaret Morrison for the kind invite to speak to staff and families from Cameron House Inverness at Inshes Church June 26th at Mid Day ( Cameron  House is a purpose-built residential service) 

This is event is open to all 


The event will be for staff along with some members of the Relative Support Group and open if anyone would like to attend 
On the day i will be have a tour of the services,meet with staff and families along with a make a difference talk followed by a Q&A session 
Thank you to Margaret and all the team for the kind invite 
tommy

Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Talking Integration and Transformation at the NHS Conference - pop by and have a chat !


                                                
Hi

With Great Thanks to NHS Scotland and SG for the kind invite to host one of the  ‘On the Couch’ sessions at Integration Hub 24 June between 12.40 – 13.30. And participate in breakout sessions both days 

 “What does integration mean for people living with dementia?” I am very honored to be participating in  sessions  both days at the NHS Scotland annual conference #NHSScot15 

The  sessions provides delegates with an opportunity to learn directly from people living with dementia and from carers about what is important to them in maintaining a good quality of life at home;and how integration can help improve  experience of care and support, Delegates will hear about the latest developments around person-centred indicators of quality of care for people with dementia and their carers. This will be followed by facilitated group discussions in which past and current experiences of people with dementia and carers of people with dementia will be shared,
(Our Director Irene Oldfather will be chairing a session with Jim Pearson from Alzheimer Scotland called)
Myself and  fellow carers will be encouraged to share  expectations and hopes about the benefits integration will bring in the quality of home-based care and support. Discussions will be captured and learning from the group sessions can help inform future commissioning, service design and service delivery decisions. 

I  will also be ‘on the couch’ at the conference during lunchtime at the event on 24 June between 12.40 – 13.30.   talking about my  own experiences of caring for my  mum Joan,

 sharing information about the project and what people living with dementia and their families and carers have told us. I  will also be taking questions (and pledges!) so if you’re heading to the conference, please do come along to the couch for a chat about the love stories of caring and the Make a Difference pledge campaign. The couch area will be at the Integration Hub – you’ll find it here:




                                  



Tommy   
                                 
                                               


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Wednesday, 17 June 2015

My mums name was Joan Whitelaw - our 8 short films

Tommy’s speech, providing a carer’s perspective,  on the theme of “No – one ever asked >” highlighted the transformational impact that listening, kindness and understanding made to his journey as a carer, and the importance of looking beyond a person’s diagnosis to engage with them as an individual.

If you would like to access further information about the Collaborative and to view presentations from the latest learning session, please click here.




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



  Interview for NHS Greater Glasgow and Clyde Patients’ Stories Library
The NHS Greater Glasgow & Clyde's Patients' Stories Library for Hospital Staff aims to use patients’ and carers’ experiences to look at how acute services can be improved.
Tommy shared his story with frontline staff working across NHS Greater Glasgow and Clyde, including the Ward staff that cared for his mother at the Southern General hospital. His film interview was also shown across a number of NHSGGC hospital sites during Carers Week 2013 to help raise awareness amongst staff about the importance of supporting carers in contributing to delivering person centred care. http://www.youtube.com/watch?v=36_Y_3y0yXM

 It’s Ok to Ask for Help!

The It’s Ok to Ask DVD produced by NHS Greater Glasgow & Clyde, Glasgow City Council, The Alliance and Alzheimer Scotland uses carers’ experiences to highlight the benefits of using carer support services in Glasgow, and encourages people to ask for help. Tommy Whitelaw, Alliance Scotland, shares experiences of looking after a partner, parent, relative, friend or neighbour with dementia. Other carers tell us about help they get from support services in Glasgow. FILM http://youtu.be/u2BAxSCcic0




Speaking Care Inspectorate Seminar 

Published on 7 Nov 2013
Tommy recently spoke to our inspection team to talk about his experiences of caring for his mum Joan Whitelaw, who died last year after living with dementia for several years. He spoke about the difficulties he had getting the right services for his mum at the right time and how this led him to take his dementia awareness campaign "On Tour"




















National Dementia Awareness Week 2014 (England) – NHS Employers Nursing Times - my Filmed interview

To mark National Dementia Awareness Week which runs from 18 to 24 May, NHS Employers the Nursing Times are working with the Alzheimer’s Society to promote resources available to NHS organisations and the NHS workforce.
As part of this activity, they have specially commissioned a short video of an interview with Dementia Carer Voices’ very own Tommy Whitelaw.

You can get more information here on NHS Employers 
This video was made to mark this year’s Dementia Awareness week 





You can click on the image Below to preview the  trailer for a longer film which will be launched on 12th December in NHS Ayrshire and Arran University Hospital Ayr lecture theatre.
make a difference film

Full version of Make a difference with the staff nhsaaa 
Nicola Film Still 2



Tuesday, 16 June 2015

Dementia Carer Voices Project JUNE newsletter Is Available To Read Here




Welcome to the latest edition of the Dementia Carer Voices Project's newsletter, which will keep you up to date with our latest activity.
This month's edition includes an overview of what we've been doing over Carers Week and Dementia Awareness Week, information on the launch of a new human rights resource which features the project, and some great guest contributions to our Dementia Carer Voices blog site.
Read: Dementia Carer Voices June Newsletter

           


Thanks for reading my blog, You can now view my 8 short flims here! http://tommy-on-tour-2011.blogspot.co.uk/2014/05/my-mums-name-was-joan-this-is-our-story.html
DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg

Speaking University Hospitals of Morecambe Bay September 16th


Hi

With great thanks to Lynne Wyre Deputy Chief Nurse, Sue Smith Executive Chief Nurse, Dianne Smith Matron for professional standards, Karen Dollard
And all at the University Hospitals of Morecambe Bay for the kind invite to speak at a ‘You can make a difference in Dementia’ conference September 16th

The day will be split in to two parts with myself speaking in the morning session followed by the Johns campaign in the afternoon

I am very honoured and looking forward to attending, meeting everyone,listening,learning and speaking

For more info and to attend please e mail Dianne Smith at Dianne.smith@mbht.nhs.uk   

Sunday, 14 June 2015

5 Talks West Park Hospital Darlington July 17th 24th 30th 31st and August 3rd

                                                DCV photo DementiaCarerRGBlandscape3_zpsa2f3d5ff.jpg


Hi 


With Great thanks to Jo Rogerson Modern Matron West Park Hospital for the kind invite to speak at a series of workshops being held  West Park Hospital Darlington July 17th 24th 30th 31st and August 3rd 


I met Jo when I was speaking a few months back at a learning event Warwick University’s Radcliffe house and Jo has kindly invited me to speak at the workshops she is organizing 


I am very honored and looking forward to attending,learning,listening and speaking 


Thank you 


Tommy 



                               


Friday, 12 June 2015

Dementia Carer Voices - Get Involved - Info

Thank you very much for your interest in getting involved with the Dementia Carer Voices project. There are a number of ways you can do so, detailed below.

Project Information Booklet  1

You can now learn more about the project and download the full 6 page booklet here. 

Make a pledge   pledge

The team have been encouraging people to make a pledge; a promise to make a difference in the lives of people with dementia, their families and their carers. Please email your pledge to dementiacarervoices@alliance-scotland.org.uk

Tweet us!  twitter

Follow us on twitter and tell us your thoughts @DementiaCarerVo

Follow the team:

@tommyNtour

@IreneOldfather

@SarahRMcDermott

@LauraMcC86

Newsletter images

The April/May Dementia Carer Voices Newsletter is now out!

If you would like to receive our monthly newsletter, please subscribe to our mailing list by sending us an email here.

YouTube  untitled

Take a look at the Dementia Carer Voices YouTube channel and keep up to date with the latest films and interviews.

Events  calendar

Please find attached a list of upcoming talks for this year. If you would like to attend one of the talks, please get in touch using the contact form below.

 

June 2015

  • 01.06.15 Speaking Napier house, Glenrothes
  • 03.06.15  Speaking HW Essex – Chelmsford
  • 04.06.15  Speaking Broomfield Hospital, Essex
  • 05.06.15 Live web cast for Scottish Ambulance Service
  • 08.06.15  Speaking Future-Focused Finance (morning)
  • 08.06.15  Live radio guest Jeremy Vine show carers week launch (Mid-Day)
  • 09.06.15  3 talks Nottingham University Hospitals
  • 10.06.15  Speaking Wakefield – Shaping the future of Dementia Care
  • 17.06.15  Speaking at Edinburgh Royal Infirmary
  • 18.06.15  Scottish Ambulance Academy
  • 22.06.15  Scottish Ambulance Academy
  • 23.06.15  Speaking  NHS Scotland Conference Workshop   12:30-13.30
  • 24.06.15  Speaking NHS Scotland Conference Workshop 11:30-.12.30
  • 26.06.15  Speaking Cameron House, Inverness
  • 25.06.15  ALLAINCE Scotland Conference
  • 29.06.15  Speaking GHA Housing Support Workers

July 2015

  • 07.07.15  Social Workers Barrhead Health and Care Centre
  • 09.07.15  Speaking Newcastle Transforming Participation Forum
  • 17th,24th,30th,31st Darlington hospital
  • 15.06.15  Speaking at I Care Conference, University of Bedfordshire, Luton
  • 19.06.15  Speaking at Nursing Conference, Oxleas
  • 28.06.15 Nursing Workshop, Hatfield

August 2015

  • 03.08.15 Darlington Hospital
  • 07.08.15 Long Term Conditions – Public Health NHSGG

 

Feedback

Have you attended one of the Make a Difference talks? Let us know what you think! We’ve gathered some of our latest feedback but would love to hear your thoughts on the project, the campaign or the talks. Please let us know by using the contact form below.

Feedback

 

Get in Touch