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

Friday, 19 August 2016

Viewpoint via Andrew Strong Mental health strategy needs to reflect the bigger picture


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ALLIANCE Assistant Director (Policy and Communications), Andrew Strong, writes the  ALLIANCE latest viewpoint on the Scottish Government's new mental health vision and priorities for the future.

Given everything that has happened so far this year, May’s Scottish Parliament election might well feel like a long time ago.  I have to admit that 2016 seems to lurch from one major event to another with very little time to reflect on what has gone before.

One of the major themes of the pre-election period, which is well reflected in many of the party manifestos, was a focus on mental health and recognition of this as a priority area for action.  This came, in no small part, due to the significant campaigning efforts of third sector organisations like SAMH, whose Ask Once, Get Help Fast initiative has resonated widely with politicians.

The new Government has been quick to outline its call for views on a 10-year vision for Scotland– a consultation that runs into September.  In discussions with members about the strategy we have, however, noted some serious concerns about the scope of the new vision, the level of consultation undertaken to date and its potential impact. 

Reflecting back on the 2012-15 Mental Health Strategy is a good starting point for recognising why.  Its thirty six commitments enabled external inquiries of human rights based approaches in mental health in Scotland and the role of peer support.  The Mental Health Foundation and Voices of eXperience (VOX) have published A Review of Mental Health Services in Scotland, providing a snapshot of experiences and views on future development and reflection on the successes and challenges of the mental health system in Scotland. 

Detailed information provided in these reports have not, on the face of it, subsequently influenced the development of the new 10 year vision.  In my view, this is largely because the previous strategy was focused on report writing and not on what should change for people with mental health problems as a result of those reports and recommendations.  What we have been left with is a series of outputs, instead of outcomes.

Earlier this week we responded to the Health and Sport Committee’s call for evidence on mental health and highlighted these concerns – endorsing the Scottish Mental Health Partnership’s recent proposal for a high level commission on the future of mental health in Scotland. 

The Scottish Government must make sure that any new strategy is developed with an outcomes focus at its core, and with opportunities to participate and hold the Government to account for its success or otherwise.  We can’t accept a situation where Scottish mental health policy, once a world leader, is not effectively influenced by the voice of lived experience.

Andrew Strong

Assistant Director (Policy and Communications)

Health and Social Care Alliance Scotland (the ALLIANCE)

< Back to Viewpoint


Honored to be on the shortlist for Kate Granger Awards 2016.

hello

Hi
Its with great emotion and pride that I can let you know that I have been shortlisted as a finalist in the Individual category of the Kate Granger Awards 2016.
Having Followed Kate's Story and incredible impact over the last few years   “I can only say how  honoured and humbled i am  to be shortlisted for this award.
kate's story and campaign has had a massive impact on so many including myself and #hellomynameis is often  part of my talks and my story on caring for my mum 


I was sitting at home the other night after receiving the news thinking about My mum and Kate who sadly recently passed away thinking  on how my mum would have loved  to have  met Kate as kindness was at the heart of how they both lived 
I would like to congratulate all the nominees and to all to have made the shortlist of nine and look forward to attending on September 7th 

 I would like to thank Joan @thebestjoan, a friend and truly inspiring transformation nurse, for taking the time to nominate me. I am extremely proud of Dementia Carer Voices’ work and to work alongside my Director and Mentor Irene Oldfather, our Chief Executive Ian Welsh,  and the rest of the team at the ALLIANCE.”

My friend,Director ALLIANCE Director Irene Oldfather said
The Kate Granger #hellomynameis campaign has touched hearts and minds, and changed clinical practice across the UK. To know that our Dementia Carer Voices engagement lead Tommy Whitelaw has been shortlisted for such a prestigious and compassionate award is in some ways not surprising given Tommy’s poignant story of caring for his mum Joan and his outreach across the UK. But I think we all feel moved to know that Tommy was selected by Kate herself in her last days. It is fitting given Tommy’s story, which is about love, care and compassion. The ALLIANCE is proud that work which tells the story of people themselves has been recognised in this way. Congratulations to Tommy and all the finalists.”

Now in their third year the awards were set up by Kate Granger, a doctor who worked tirelessly to raise awareness around compassion in the NHS through her #hellomynameis social media campaign.  There were more than 130 nominations for this year’s awards, and with her friend Dr Natalie Silvey, Dr Kate Granger was able to choose the nine finalists and three winners of the 2016 awards in the days before she sadly died on 23 July. Kate regularly spoke of the awards as her legacy saying,
Being a patient has taught me a huge amount about being a doctor. Prioritising compassionate care in its rightful place alongside patient safety, under the umbrella of quality is perhaps one of the most important things I have learned.
The shortlist is made up of three nominees in each of the three award categories. The first award is for an individual working in the NHS or delivering NHS funded services. The others are for teams or organisations who are part of the NHS, or who deliver NHS funded services. These services can be delivered in hospitals, or in a primary care, community or residential setting.
Thank you
Irene, Tommy, Laura and Ashleigh.
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, 15 August 2016

Read the Dementia Carer Voices Project’s August newsletter, Here

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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 highlights include Dementia Carer Voices partners with the Chief Nursing Officer Directorate, What does Brexit mean for people with dementia and their cares? and  Driving and Dementia by James McKillop.
                             

                            

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, 10 August 2016

Celebrating Make a Difference Pledges at the NHS EXPO September 7th

HI


I am so very honoured to be invited to speak at the NHS EXPO on our ' Make A Difference' campaign and tour on September 7th 
Dementia Carer Voices are very honoured to be invited to speak at the NHS EXPO on our ‘Make A Difference’ campaign and tour on September 7th 2016.
We have now received an incredible  10,000 personal pledges from Individuals, Hospitals, Care Homes, Universities and Colleges on how they will make a difference for people living with dementia, families, carers and colleagues.
Tommy had the great experience to speak at the EXPO a few years ago at the beginning of the campaign, So its great to be returning to give a update.
Tommy will be taking part in the session with Paul Jebb @pauljebb1  Exp of Care Professional Lead, @NHSEngland Hon Snr Lec @uclan and Jen Kenward @Jenkenward, Experience of Care Lead – Community, primary & integrated care @NHSEngland  who will speaking about ‘Turning good intentions into a purposeful action’ on how and where people can find support on the pledges made this session will be at Central 8 at 12 o’clock.
We feel this is a great opportunity to both celebrate and help support the incredible people and pledges we have met and received along the way.
Tommy has been invited to speak at a second session later that day  from 4 pm till 4:20 at Central 5,6,7
There are many people to thank for this amazing opportunity here are a few:
Jane Cummings – CNO, @NHSEngland @JaneMCummings
Neil Churchill –  Director for Patient Experience, @NHSEngland  @neilchurchill
Paul Jebb  – Exp of Care Professional Lead, @NHSEngland @pauljebb1
Jen Kenward – Experience of Care Lead, @NHSEngland @Jenkenward
Nicole Fisher – NHS England Team Manager. Older People’s Mental Health and Dementia
Thank you for this wonderful opportunity to share the pledges people and work of our Dementia Carer Voices project 


What’s on offer from Health and Care Innovation Expo 2016? 
  • Two main stages, with speakers including NHS England Chief Executive Simon Stevens, comedian and mental health campaigner Ruby Wax, and international digital healthcare expert Professor Bob Wachter MD. Our list of high profile speakers continues to grow, with further national and international experts confirmed every week.
  • More than 100 expert-led sessions in our pop-up university, with targeted sessions led by key national organisations and directorates
  • Detailed, professionally-focussed seminars and activities in dedicated satellite sessions
  • Four feature zones, each running their own speaker agenda across two days: NHS Right CareNew Models of CarePersonalised Medicine and Digital Health

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, 4 August 2016

Dementia Scotland 2016 A Human Rights Based Approach to Care, 14 September Earth, Edinburgh

Dementia Scotland 2016

A Human Rights Based Approach to Care, 14 September 2016 - Dynamic Earth, Edinburgh
A limited number of funded (no charge) places are currently available for the Dementia Scotland 2016 Conference these places are being offered exclusively to members of the Health and Social Care Alliance Scotland. If you would like to attend please email rob.daniels@govconnect.org.uk to secure your space.
A link to the conference website can be found here.


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, 3 August 2016

Lived experience and neurological conditions: A personal challenge






                                              
Our latest post comes from Paula Aldin-Scott of the ALLIANCE's Neurological Programme on her personal motivation and supporting the voice of lived experience to improve neurological services across Scotland.
 
I moved into the not for profit sector in 1999, after 17 years in other sectors. I found the third sector allowed me to share and enjoy hope, empowerment, fairness, respect, and equality in the work I do and support.
My previous role was with the National Neurological Advisory Group (NNAG) whose purpose was to support and monitor the implementation of the Clinical Standards for Neurological Health Services which aimed to improve the journey from referral into services and ensure everyone who accessed a service experiences a quality of care that gives confidence.  Hearing the voice of lived experience was a vital element to this work, through the Neurological Voices Programme which sought to connect and empower people to get involved in improving local services.


There have been many successes in the delivery of improvement, as we championed the development of co-produced care plans for those living with neurological conditions and gave those committed to improving neurological services a forum to share learning and good practice.  One of the Neurological Voices’ success stories was the lowering of a pavement outside a NHS Greater Glasgow and Clyde Neurology Department which improved accessibility.


The challenges to creating a working environment that delivers on improvement come, ironically, from change. Changes in government, new legislation and policy, budgets, culture, demographics, roles and relationships. The most significant change to me being the enactment of the Public Bodies (Joint Working) (Scotland) Act 2014 and the advent of health and social care integration. This has shifted the landscape of health and social care in Scotland to which the neurological community, including individuals, organisations and health and social care providers, will have to adapt. 

Jamie Hepburn MSP, Scotland’s Minister for Health Improvement until May’s Scottish Parliament election, said in March: “The recently published A National Clinical Strategy for Scotland makes it clear that we want everyone, including people with neurological conditions, to receive care in their own homes or as close to home as possible.” 
I’m proud to say that the Neurological Programme, recently launched at the ALLIANCE, has these values at its core:
·         Co-production
·         A seamless health and social care service
·         Learning from the voice of experience
·         Collaborative working
The programme will strive to have the voice of lived experience heard and acted upon. 
Linking in with the Chief Medical Officer’s First Annual Report, Realistic Medicine, Dr Catherine Calderwood states that: “Shared decision-making is core to the safety, effectiveness and person-centeredness of care and therefore resonates with Scotland’s Healthcare Quality ambition. The person centred portfolio in Scottish Government is driving and supporting policies and quality improvements that help reshape health and care through the lens of people using services.”
As a reflection of this our Stakeholder Event on 28th July and Involvement Network event on 18th August seek to engage with organisations and individuals with interests across a wide range of sectors such as acute care, rare diseases, palliative care, advocacy and social care. 
My personal challenge as we move forward is to adapt my knowledge and experience from previous roles to support and empower this voice. I am grateful that what I have previously learned is not lost but is going to be built on in the future, and that people who live with neurological conditions will continue to be able to bring their knowledge and expertise to bear.  
Paula Aldin-Scott
The ALLIANCE’s Neurological Programme




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

Tuesday, 2 August 2016

Guest Post via Penny Bond - Think Delirium

This weeks guest blog come from Penny Bond, Improvement Support Team Leader in Healthcare Improvement Scotland leading a national programme of work to improve older people’s acute care @opachis. Here she talks about a collaborative national approach to improving the identification and management of delirium in older people admitted to acute hospitals.

Delirium is a serious medical emergency affecting up to 25% of hospital inpatients. This figure is even higher in individuals having surgery or receiving intensive or palliative care. It is associated with poor outcomes, is more prevalent in older people admitted to hospital and the risk of developing delirium is greatly increased in people living with dementia.   Despite its prevalence and impact delirium is not always reliably identified or well managed. Improving the identification and management of delirium has been and continues to be a key area of focus for Healthcare Improvement Scotland’s (HIS) improving older people’s acute care programme since April 2012. Colleagues across Scotland including the Scottish Delirium Association and Alzheimer Nurse/AHP consultants have worked collaboratively to take this work forward.

Although delirium and dementia are different evidence tells us that an existing dementia can significantly increase the risk of developing delirium. Conversely people with delirium are more likely to suffer further cognitive decline including dementia. Delirium is very distressing to individuals and to their families and carers. It is vital that staff are aware of the connection between the two as well as understanding the difference between them.

One of the factors differentiating delirium from dementia is its sudden onset. When family members use expressions like “This is not my Mum” or “I don’t recognise Dad” it should serve as a trigger for thinking about the possibility of delirium. People who develop delirium stay two or three times longer in hospital and are also more at risk of hospital-acquired complications, such as falls and pressure ulcers, are more likely to be admitted to long term care, and have an increased mortality. Not all episodes of delirium are avoidable but there is evidence to suggest that about a third of deliriums are preventable. Some of the risk factors that can be reduced include dehydration, constipation, multiple medications, infection and sensory impairment.

In response to requests from clinical teams we worked closely with the Scottish Delirium Association and other colleagues across Scotland including Alzheimer Nurse and AHP Consultants to design, test and adapt a range of tools and resources to help assess, manage and review delirium. The two main tools that have been tested are the 4AT assessment tool and the ‘TIME’ bundle. The 4AT has been shown to be a straightforward and effective means of screening for delirium. When a possible delirium is identified the ‘TIME’ delirium care bundle provides a guide for staff to think about possible triggers for the delirium, any investigations that may be needed, how to manage care effectively and crucially highlights the importance of engaging with families and carers. The value of listening to family members can’t be under estimated and patient and carer experience of delirium have informed tools and resources.


1

Providing staff with education on delirium can contribute to early recognition of delirium in older people. Colleagues at NHS Education for Scotland developed a range of learning resources to support staff and enhance their knowledge and understanding of delirium. Two modules are available on Learnpro (http://nhs.learnprouk.com). The first module ‘An Introduction to Delirium’ provides baseline knowledge and skills for all staff working in health and social care settings while the second module ‘Delirium: Prevention, Management and Support’ aims to enhance the knowledge and skills of health care professionals working across all care sectors.

Healthcare teams across Scotland have made significant progress in raising awareness of delirium locally and supporting staff with education and improvement activity. Some health boards have run Delirium Awareness days or weeks where they have run information sessions for colleagues and actively promoted the delirium toolkit. Some boards now run regular training for staff on delirium identification and management and others have incorporated delirium into existing dementia education sessions with staff. Recently a national think delirium week generated a lot of interesting discussion and sharing of ideas via social media. In Scotland the week culminated in the third national delirium conference. 150 delegates attended a day focused on delivering quality delirium care including hearing about ‘A daughter’s perspective’, sharing experiences, learning from colleagues across Scotland and making personal pledges to improve delirium care. Click here to view the photo gallery from the day http://www.healthcareimprovementscotland.org/news_and_events/news/gallery_focus_on_delirium.asp



Benefits of adopting a national approach to improving delirium care include the creation of opportunities for networking and sharing new knowledge and experience across Scotland and learning from each other. Awareness of delirium has increased and there is evidence of more reliable and consistent processes in delirium screening.   The programme has facilitated collaborative working between teams and across Scotland. The improvement focus of HIS, the subject matter knowledge of clinical colleagues, the lived experience of families and the commitment and engagement of local teams have all served to augment these benefits.

With an ageing population generally and rising numbers of older people with dementia admitted to hospital as an emergency caring for older people is ‘core business’ for hospitals. We will continue to work with colleagues across Scotland to ensure a consistent and person-centred approach to the improvement of delirium care for all older people in acute care.


Make a Difference - Lanarkshire Care Homes August 30th -

Hi 

With great thanks to Lynn Flannigan @lynnflannigan1 Lanarkshire Care Home Liaison Physiotherapist Law House for the kind invite and for arraigning a event on August 30th at Udston Hospital Hamilton from 09:3- 11:30 am 

 Places are free and can be booked via e mail VIA  Marion.Reid@Lanarkshire.Scot.nhs.uk


With great thanks to Lynn and all the team for this kind opportunity to take part  


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, 1 August 2016

celebrating 5th Anniversary of campaigning and Friendships

                              

June 6th will be 5 years to the day since I began walking around Scotland’s towns and cities to collect the life and love stories of people across Scotland who care for a loved one with dementia. This will also be the 5th year of my friendship with my now Director and mentor Irene Oldfather. 

At the time of my walk, I was a full-time carer for my beautiful, kind, and caring mum- Joan, who had Vascular Dementia. My kind mum passed away in September 2012. 
I felt passionately that no one should have to face the confusion, loneliness, and isolation that we felt. On 6th June 2011 I began my tour, collecting hundreds of life story letters, detailing the experiences of individuals caring for a loved one living with dementia.
You can view the video about the walk below which was later shown at the Scottish Parliament. It includes families and carers reading from the letters they sent during my dementia awareness tour of Scotland’s towns and cities.

An issue that struck me during my journey caring for my mum was the lack of awareness and understanding of dementia, and the way in which we perceive this illness as a wider society.  My door was always open but no one walked through it, people didn’t come to visit us anymore, and I truly believe that was down to the stigma surrounding the illness.
Everyone affected by dementia has a unique story to tell, and by sharing our experiences we can help to tackle the misunderstandings surrounding dementia and offer hope to people in the same situation.


Since then, I have met with thousands of carers, health and social care professionals, and students through my original ‘Tommy on Tour’ blog and now as Project Engagement Lead with the Dementia Carer Voices Project at the Health and Social Care Alliance. Trying my best every day, working alongside my friend, Director, and mentor Irene Oldfather, my friends & team mates Laura and Ashleigh, and colleagues at the ALLIANCE in taking the life and love stories of carers who have written to us, carers we have met in person, spoken to on the phone, heard from through email or through our online survey and shared these with health and social care professionals, students, MSPs and members of the public to raise awareness of the impact of dementia on families and the importance of empowering carers in carrying out their difficult but vital role. You can view 10 films documenting this story at the link here


Our work continues,You can read more about the work we do below 
                   

I feel so Honured  to have met so many inspiring people along the way in fact I meet incredible people every day dedicated to making a difference for others 
There are so many people to thank for all the support over the years ,Irene Oldfather,Ian Welsh OBE my team mates present Laura and Ashlegh and Past Chris and Sarah my wider Colleagues at the ALLIANCE amazing people who have shared their stories with and the incredible families,Carers and health and social care professionals  I have been so lucky to meet in person 

Thank you for all that you do. Thank you for the amazing kindness and support over the last 5 years  


I would also like to thank First Minister Nicola Sturgeon for Holding My Mums Hand In the last months of my mums life and for encouraging me to take our voices across the country    

Together we can make a difference.
Tommy 

Make a Difference campaign update 

We have engaged with over 50 ,000 people in person over the last 2 years, collecting over 10,000 personal pledges from health and social care professionals and we’d like to share some of their inspiring words, and help celebrate the work they do to make a difference to the people they care for.
You can read every pledge here athttps://dementiacarervoices.wordpress.com/pledges/
Read our case studies of how hospitals, universities and care homes are putting people at the heart of their work at: https://dementiacarervoices.wordpress.com/case-studies/
Listen to Director Irene Oldfather and Project Engagement Lead Tommy Whitelaw update the Community Chanel about the pledges and the You Can Make a Difference campaign: http://www.communitychannel.org/video/6BvGx7iqymw/do_something_brilliant_series_2_episode_6/