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, 20 March 2017

Speaking Southport District General Hospital - 2 Talks July 3rd

Hi


With Great thanks to Sue Johnson Matron Quality and Performanceand colleauges 
Southport and Ormskirk Hospital NHS Trust for the kind invite to give  two talks at the trust on July 3rd 


I am very grateful for this kind opportunity


 all are welcome by registering via the info below 



Tommy will be delivering two sessions on Monday  3rd July 2017 at the Clinical Education Centre Southport District General Hospital
All staff and members of the public are more than welcome to attend either session. 


Times are 10am-12pm or 2.15 pm -4pm

For more information and to book your place,

Please contact Sue Johnson   or  Michelle Kitson, 


Sue Johnson
Matron Quality and Performance
Southport and Ormskirk Hospital NHS Trust

Twitter@SONHSTrust
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, 16 March 2017

Monday speaking Glasgow University School of Nursing 1st Year Nursing Students

With Great thanks to Jane Joy Senior Lecturer at Glasgow University School of Nursing for inviting Dementia Carer Voices to speak to the Nursing Students this week.
I have had the great honour of speaking at the University a few times before  including being a guest speaker at Staff Nurse Development Days . You can read thee pledge posts from previous  event visits  here. and here 
last Year we also worked  in Partnership with Myself ,our Director Irene Oldfather,the ALLIANCE , Jane and the University on the letters we receive from people living with dementia ,families and carers .You can view the published report below 
We are proud of this on going relationship with the University and look forward to meeting the next generation of Nurses on Monday 

tommy  
A joint article has been published between the ALLIANCE and the University of Glasgow, based on the letters Project Engagement Lead Tommy Whitelaw collected from carers across Scotland. These letters have been analysed by Jane Joy and Diane Willis from the University of Glasgow, with the results of their study now available:
Examining Dementia Caregivers’ Experiences, Link to FULL published  Article   The International Journal of Aging and Society, Volume 7, Issue 2, pp.59-72, November 10, 2016. By Jane Joy, Thomas James Whitelaw, Irene Oldfather and Diane Willis.
                     Please see below a short summary of the article 


1.    Introduction

Professors Jane Joy, University Teacher, Nursing and Health Care and her colleague Diane Willis, University Lecturer, Nursing and Health Care, at the University of Glasgow performed an independent analysis of 417 letters from carers sharing their experiences. The letters were gathered  after Tommy Whitelaw, now Dementia Carer Voices Project Lead, asked carers to share their stories with a view to improving policy and practice.

The report below summaries some of the key findings from the report.

2.    Findings

·         Many people reported becoming a carer through chance by visiting a friend or relative, often someone that they hardly knew, and performed took on a caring role as an interim measure believing that more support would be put in place
·         A large proportion of the letters began with ‘my mother/father had just had a stroke, cancer, hip replacement, diabetes’, highlighting that people are living with multiple conditions/comorbidities.

·         Carers have very little ‘downtime’ – many of the letters were written very late at night/very early in the morning

·         The emotional energy of caring was a key theme that carers described in their letters. Carers described their sense of loss, many of whom are themselves in their 70s and 80s and have been married to their partner for several decades:

o   ‘‘I am 80 years of age I am finding it tough and there is no one to share and help me get through. I feel so low at times and LONLEY. I NEED a human listening ear and also an understanding one.…we had a very happy marriage until my husband took dementia and I HAVE LOST A MARRIAGE AND LOST MY HUSBAND’ [carer emphasis].
o   ‘I had our retirement all planned, the holidays etc., the future I saw for us is no longer there after all my hard work.  My world collapsed around me’ 
·         Many carers are isolated and expressed their feelings of loneliness, citing a lack of understanding and having no one to talk to:

o   ‘I feel lonely and isolated. Sometimes I could cry with loneliness’ 
o   ‘I can’t go out after mum comes back from the daycentre.  I am in every night... but lately I have had a feeling of being imprisoned and without freedom.. caged. The phone rarely rings and friends have moved on’  

·         This isolation was often due to lack of respite or time to socialise, with many echoing that caring is a full time responsibility:
o   ‘’I have been spending 168 hrs a week in my caring role like so many other carers.’
             This has led to an impact in carers health and wellbeing, with a large proportion of carers fearing for the future should they become ill: 

o   ‘She developed dementia and was unsettled all day and night. My father had little or no sleep and was unwell himself so I spent every day in their house giving him a break.  My health soon failed because of all this and I found myself on anti-depressants’
o   ‘Our relationship has changed I do more for him.. I worry for the future what if I get ill?’

·         Frustration was another theme that emerged from the letters. Carers expressed frustration at their concerns not being taken seriously, at the difficulty in obtaining a diagnosis and at the lack of support. This was also identified by a number of carers in the Dementia Carer Voices survey which captured the views of a further 160 carers.

o   ‘The doctor didn't even take time to review [him] and told me he was depressed because he was able to answer all of the questions…… When he died his GP rang to ask if I was ok – I asked if he had dementia [they replied] “yes of course he had vascular dementia” this was the first time I was given an official diagnosis’  
o   ‘..his behaviour deteriorated, but he was able to put on a front to other people so no one believed me.  He was entirely convincing and I was [thought of as] stupid’
o   ‘My purpose in writing is to ensure that ......health care professionals do not just tick the box but listen to families who know the person’

·         Many carers felt abandoned by health and social care staff, and that their rights were not being respected:
o   ‘Health service consultants, doctors, nurses do not understand the stress of the carers physical, mental and emotional feeling on top of which [we] have no medical training at all….the only daily help I had at the age of nearly 80 was a carer visiting in the morning.’
o   ‘Patients rights means if he refuses he does not have to participate.... This means I am left to toilet him.. The safety assessment requires two.. But I am left to carry out tasks on my own .. Where are my rights?’

·         Over and above and emotional and physical strain, a caring role can cause severe financial strain, particularly with carers who have had to give up work or reduce their hours at work, or who are retired.
o   ‘When he went into a home and I had to live on my pension... I struggled for a year before I found out I could take half his occupational pension for my own use’
o   ‘I got into serious financial debt because no one directed me to the attendance allowance, community charge discount or carers allowance’  
·         A further area of concern was the discrepancies in the care provided:

o   ‘It was very difficult looking after my husband and myself as I am quite a small person and my husband was very heavy.... I had to have day care four days as my health began to suffer...  my husband fell down stairs.. I received  some care from my local authority.. one hour  in the morning to shower and dress my husband’
o   ‘Respite care was like a kennel for old people with nothing to do’

·         These responses are contrasted by pockets of good practice:

o   the staff there were wonderful and put me in touch with day care providers including Alzheimer Scotland. This took the pressure off me
o   ‘A wonderful CPN and a local lady from crossroads came to sit with my mum to give dad a break the good morning and good night ladies (home helps) were also a great help.’ 

This identified that good care was care that encompassed not only the person with dementia but also the carer.

3.    Conclusion
The concluding remarks of the report reinforced the same issues of being of key concern to carers; namely the frustration at the lack of forthcoming information, the discrepancies of care, the emotional, financial and physical demand on carers and the gap between policy and practice.

“It was clear that people with dementia and their carers were not able to engage with the system effectively at present. Very often carers often had nowhere to go and no one to turn to whilst essential equipment e.g. incontinent pads were difficult to obtain. The burden of care impacted on their health and well-being as did finances. Within this were pockets of good practice, which carers defined as services that listened, acknowledged their experience and met their needs and the person with dementia. At present despite the plethora of policy aimed at increased awareness and support for people with dementia, there is a gap between what support has filtered through and the general malaise these carers felt.  Services and policy makers need ensure that there are opportunities for shared/joint activity including innovative shared care/respite, support and counselling services for Carers looking after people with Dementia  and better integrated information about dementia, benefits and support.”

About Dementia Carer Voices

Dementia Carer Voices seeks to:

  • 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 lives;
  • Work with other Carer Organisations and key stakeholders within and beyond the ALLIANCE’s network to ensure that relevant strategies are well informed by the views of service users.
  • Harness the work undertaken to date by the Tommy on Tour campaign, and support Tommy Whitelaw to undertake further outreach work to carer organisations across Scotland.

About the ALLIANCE

The ALLIANCE has three core aims; we seek to: 

·         Ensure people are at the centre, that their voices, expertise and rights drive policy and sit at the heart of design, delivery and improvement of support and services.
·         Support transformational change, towards approaches that work with individual and community assets, helping people to stay well, supporting human rights, self management, co-production and independent living.
·         Champion and support the third sector as a vital strategic and delivery partner and foster better cross-sector understanding and partnership.

   

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

Monday, 13 March 2017

A great Honour to be meeting the First Minister on March 28th



Hi 

With Great thanks to First Minister Nicola Sturgeon for taking the time to meet with me on March 28th.

I am so very honoured and grateful for this opportunity to meet and update on my work and hopes for the future.

When campaigning whilst caring for my wonderful mum Joan, I was  so very honoured to meet back then on quite a few occasions, to share the letters that I received and our personal experiences of Mum living with dementia and my own as a full time Carer.

A month before my mum passed away the First Minister ( then Deputy First Minister) took time to,in private visit my mum at our home and hold my mums hand. A day that I will never forget 




I am so very Grateful for this opportunity to meet again,update on all that has happened since, and share my hopes for the future. 

Thank you First Minister for this kind opportunity. 

Thank you from a son 


Tommy 




Thursday, 9 March 2017

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 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



 Putting the Care into Dementia Care

This training film is a collaboration between Health watch Essex, staff at Broomfield Hospital and Dementia Carer Voices







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

Dementia Carer Voices where proud to tour with Healthwatch across Essex back in October 2015.  You can view the blog post and pledges from the few days here. 
Thanks to every one of you who attended each event and the @HWEssex team for arranging the few days.  Below is a new film about the tour with some of the Nurses who attended sharing their pledges made to the Make a Difference Campaign each day. 
HWlarge




 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




'On the Couch' with Tommy Whitelaw filmed interview NHS Scotland Conference June 2015





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, 7 March 2017

Aliss - it's all about co-production

This post is taken from our main ALLIANCE website 

Lets hear what my friend and colleague Stephen had to say.....

ALISS.. Its all about co-production 


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“So…what is ALISS?”  

I get asked that a lot; I really don’t mind because the people asking are usually looking for ways to help support people, or sometimes are looking for support for themselves. It’s brilliant being able to help!

I usually begin my answer with the first line of our ‘About ALISS’ page on our Beta website

“ALISS helps people find and share information about local services and resources that support health and wellbeing”.

But here’s the thing; it’s struck me that I’m not really answering their question. Instead, I’m telling people about what ALISS does rather than what it ‘is’.

It’s a bit like someone asking me ‘so who is Stephen Plunkett?’ and me answering ‘well I lead on ALISS engagement with stakeholders, build partnerships, and report to the programme board’. That’s part of what I do in my job, but it’s not what defines me a person. I’m a husband, son and friend who tries his best to help people live healthy and happy lives and who still harbours a not so secret ambition to be a rock star! That’s who I am.

Right now there are big changes happening to ALISS. Lots of these are functional and operational changes that are being documented by my colleague Douglas in his own blog. Keep tabs on this as it’s a brilliant way to keep up to date with our developments. Making these changes also provides an opportunity to step back and reflect on those deeper questions about ‘what ALISS is? So I thought I would take this opportunity to share my own view on what defines ALISS.

I believe that ALISS is co-production in action.

Now I know we talk about co-production all the time, but bear with me on this one! You see, ALISS is built around the belief that given the right tools and support, people can and will work together to find, share and maintain information about community resources that can enhance health and wellbeing.

ALISS was created to be different from the traditional model of a centrally administered and ‘standalone’ database of local services. We think that’s an outdated approach which doesn’t fit well with the ethos of collaboration and joined up approaches that we as a nation are aiming to embed within health and social care. We believe that ALISS has an important role to play in helping to realise the ambitions set out in the 2020 vision for health and social care, particularly in regards to the person centred, outcomes focused delivery of services. ALISS can help illustrate the richness of our communities and the scope of services available to support health and wellbeing. We also have big plans around providing other types of data that can help to inform responsive localised planning and commissioning, but that’s a topic for another blog!

So what’s the practical impact of co-production? Well for one the information in ALISS hasn’t been gathered by ALISS staff. Instead, it’s been added by a diverse range of over 1300 individuals and organisations and is the product of their engagement (sometimes professional, often voluntary) with communities and the people who provide services and support within them. The ALISS programme provides support and guidance around things like asset mapping to aid that engagement. Our ALISS digital services provide mechanisms to enable the information gathered to be found and shared. This might be via the ALISS website or through any other website or digital platform that has  ALISS search functionality embedded within it. This is a service that we can offer for free and it’s part of our innovative approach within the digital health landscape. Please don’t hesitate to get in touch if you are interested in finding out more!

I believe that if you are serious about co-production it should be reflected in all aspects of what you do. Therefore we have always tried to embed co-production principles into the operation of the whole ALISS programme. For example, the ‘blue-print’ for ALISS was not informed by the ideas systems designers or developers, but through listening to the lived experience and ideas of ALLIANCE members – disabled people, people living with long term conditions and unpaid carers. Likewise, our stakeholder led innovation and reference groups have provided guidance and critical insights throughout the life of the programme. Even the changes that we are currently making are informed by the learning that we’ve gatheredand are designed to respond to requirements of ALISS users and strengthen the ethos of co-production as the basis of how we operate.

A good example can be seen in the changes we are making around how the information contained within ALISS can be updated and maintained. In our old system, if there was an issue with a resource (say for example a link to a webpage was broken, or the description was out of date) any user could report it, but only the person who added the resource in the first place could fix it. Now that’s fine if they had added only one resource, but what if they had added more than 500? Is it reasonable to expect that they could maintain that level of information? More importantly, does it fit with our co-production approach? Perhaps not, so we are going to respond to and do it differently.

In our new approach, ALISS users will be able to suggest edits to any resources that they believe contains inaccurate or out of date information. The edits will be reviewed and checked by other users before being applied to the resource. In essence, the responsibility for maintaining information will be opened up to all users and will no longer sit solely with individual account holders. This will be replaced by a new collaborative approach in which the responsibility is shared.

There are lots more examples of how the changes that we are making will strengthen co-production and collaboration in ALISS and I’ll be using this blog to discuss these in the coming months. That said, co-production isn’t always easy so I’ll also be communicating some of the challenges we have faced and explain how we are working to overcome them.

So there you go, co-production really does define what ALISS is all about. In fact, it’s what makes ALISS work!  

Stephen Plunkett, ALISS Partnership and Development Manager, the ALLIANCE