Wednesday, 21 December 2016

New Viewpoint from Andrew Strong in response to publication of @scotgovhealth's Health & Social Care Delivery Plan


Our latest viewpoint comes from my friend and Colleague Andrew Strong, the ALLIANCE's Assistant Director (Policy and Communications), in response to yesterday's publication of the Scottish Government's Delivery Plan for Health and Social Care.

It’s an analogy which has been used many times but health and social care services in Scotland are at a crossroads. Commentators and policymakers alike have long recognised that we need swift action to increase preventative, community based support or risk further and further spending on crisis management approaches.

The overuse of “the crossroads analogy” should perhaps tell us something – maybe that the rhetoric around prevention and preventative spend just isn’t becoming reality?

Yesterday’s publication of a new Health and Social Care Delivery Plan is a welcome intervention – focusing as it does on the need to shift away from a ‘fix it’ mentality, towards the social model, early intervention and self management. The plan brings together a variety of both existing and new commitments into a timeline of change for health and social care. These changes run from the short term setting of delivery ambitions for delayed discharge to the reduction of smoking levels to less than 5 per cent by 2034.

At a practical level this plan allows us to monitor how purposeful such activity is – and comment on what needs to change where it is not.

But ultimately the decisions being made by integration authorities, Health Boards and councils can, at least on occasion, run in the face of lofty ambitions. Last week’s draft budget committed further investment into social care, but this has been effectively ring fenced for spending on the living wage, removal of war pensions from care charging and implementation of the new Carers Act. These are all valuable and worthwhile investments, but this needs to happen alongside further innovative thinking about how money invested in acute settings can be redirected to support people at home and in their local community. The ALLIANCE’s pre-budget statement set out ten ideas to support such a change.

Relationships between the third sector and statutory services are important here too.  But our Third Sector Health and Social Care Support Team recently identified concerns that local partnership working has gone backwards in the last two years and as a result, there are already concerns about whether any change as a result of health and social care integration will be truly transformational, even in the longer term.

As was the case with those that came before it, turning this plan into action will be challenging – and will require people from across sectors to support it and time and effort must be invested in bringing the views of people who use support and services to the table. After all, the risk of not doing so is too great.

Andrew Strong

Assistant Director (Policy & Communications) 

Health and Social Care Alliance Scotland (the ALLIANCE)

< Back to Viewpoint

Saturday, 3 December 2016

The Pollok Pledge

In partnership with Glasgow Clyde College and Humza Yousaf MSP, Minister for Transport and Islands, Dementia Carer Voices launched a community pledge in Pollok, giving constituents the chance to reach out to their neighbours and help reduce isolation and loneliness.
Director Irene Oldfather chaired the day, read about her reflections here:
Chairing the launch of the Pollok Pledge on Monday was inspiring. Inspiring for many reasons but for me the enthusiasm of young people from ordinary families to want to do something, to make their local community and the lives of vulnerable people in it, better, was awe inspiring. Monday was the start of the ALLIANCE and Dementia Carer Voices support for making Pollok a Friendly community – for our most vulnerable citizens.
Social care students have pledged to make a difference such as Connie Creaney, who is a Level 6 Social Care student who has pledged to “make someone smile going through a difficult situation”.
Their commitment is already infectious and will have a cascading effect across shops, schools, local businesses, cafes. The people of Pollok are already rising to the challenge Local MSP Humza Yousaf joined the launch and pledged to do his bit to work with the community to take their aspirations  forward.
We also heard about ALLIANCE work tying in to the local community through the National Link Worker Programme, where Gerry Mitchell is our local person on the ground connected to the GP practice to promote health and wellbeing of local people. As a link worker, Gerry is responsible for linking people to community initiatives, taking forward the person centred agenda where we focus on what matters and who mattes to you. Gerry is very approachable and can be contacted via the local practiceon 0141 531 6860
Our ALISS team have offered to assist the local community map its assets so that people know where to go to meet people. Reducing isolation is a huge part of promoting health and well being.
And of course the motivation behind the Pollok launch was our own Dementia Carer Voices Project Enagagement Lead Tommy Whitelaw, award winning campaigner who lives in Pollok and through his outreach with Clyde College involved the students and lecturers in taking forward the local initiative. Tommy’s carer journey looking after his mum Joan touched the hearts of students who wanted to get involved to reduce the loneliness and isolation that people can still feel in the busiest of streets.
Monday was the beginning of a great community initiative that will build capacity and involve people. Loneliness and isolation is everyone’s business.  If you want to get involved or speak to any of the team contact  us at the ALLIANCE on 0141 404 0231.
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Thursday, 1 December 2016

Dementia - Loneliness,Isolation,Understanding,We can change that cant we ?

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.

Friday Speaking Paris Alzheimer’s Outlook 2016 Prospective Focus Group

Project Engagement Lead, Tommy Whitelaw will be off on his travels again on the 6th of December to Paris.
Tommy has been invited to runs a group discussion on: “The perspective of individuals and families facing chronic diseases – practical issues (work, finances, cultural attitudes…)”
More information on the event and sessions can be found below.

Alzheimer’s Outlook 2016 Prospective focus group, December 9th, 2016 

“Which care if Alzheimer’s disease could be diagnosed  before any clinical sign?”
Scientific programme and schedule
1. Introduction
The Fondation Médéric Alzheimer initiated in 2007 a strategic reflection on how the future context of dementia may unfold in the next decades, in collaboration with international experts. This challenging endeavor implies engaging with uncertainty within limits of scientific plausibility. This prospective reflection is called the Alzheimer’s Outlook.
The multi-disciplinary expert group composition varies according to the focus given (prospective core group or special focus group) and to the evolution of existing knowledge at the meeting time. The prospective core groups discuss about long-range plausible developments of the extended dementia field, whereas focus groups discuss about specific issues to gain further insight in a given area. Expertise gathered varies from one group to the next. The expert group discussion remains confidential and restricted to group members. Some key elements are published in scientific journals.
A first prospective core group met three times between 2007 and 2010, under the coordination of Pr Henry Brodaty from the University of New South Wales (Australia). Time horizon was set to 2020. A synthesis of this work has been published1.
A second prospective core group met twice in 2012, led by Pr Philippe Robert, coordinator of the Research Memory Center at the Nice University hospital, France. Time horizon was set to 2025. A synthesis of this work has been published2.
In 2013 and 2014, three special focus groups, still led by Pr Philippe Robert, convened on the themes “Senses and Alzheimer’s disease” and “Technologies and Alzheimer’s disease”. An article focused on sensory mechanisms and dementia has been published3. An article titled “Technologies to address capabilities of people with dementia; from research to practice” has been submitted to Dementia.
In December 2015, a third prospective core group, still coordinated by Pr Philippe Robert, met to continue updating the Alzheimer Outlook, with a seminar titled: “Dementia beyond
2030: an update”. Seminar covered: disease scope; epidemiology, risk factors, and prevention; understanding of cognitive aging and dementia; biological causes of dementia; detection and diagnosis of dementia; new therapeutic targets for dementia; psychosocial research and interventions in dementia; assistive technology and dementia; sensory impairment and dementia; biomedical ethics and dementia; dementia care; public policies, economics, and dementia. A scientific article is planned.
In December 2016, The Fondation would like to bring together a specific focus group on prevention titled: “Which care if Alzheimer’s disease could be diagnosed before any clinical sign?” Time horizon, largely extended, is now set to 2050. A prospective, fictional scenario, to be challenged by the group, has been written by the Fondation Médéric Alzheimer to induce a high-level, open discussion within defined boundaries. This group will gather international experts from different fields (aging and public health, neurology, psychiatry, psychology, nursing, marketing management, engineering, neurobiology, economics, philosophy). The expert group will be coordinated by Pr Philippe Robert. A scientific article reporting the results of the seminar will be written by the Fondation.
2. Seminar objective
The expert group will discuss how the context of AD may evolve by 2050 under the angle of mid-life secondary or tertiary prevention after a diagnosis of AD has been established with a composite (biomarker, imaging-based) test with a 100% predictive value (hypothesis of diagnostic certainty).
Expert discussion will be based on a future fictional context described in the attached scenario: “Alzheimer’s disease repelled: lessons from four decades of prevention in people without clinical signs” (page 5 of present document).
This scenario deliberately intends to challenge the biomedical model of Alzheimer’s disease diagnosis and prevention within limits of scientific plausibility.
Group discussion should address the 3 following questions: 
Question 1: how to define the target population at-risk for AD, to be screened with the test? 
Question 2: what will be the consequences in everyday life for the people diagnosed for AD without clinical symptoms? 
Question 3: what medical and psychosocial interventions should be designed for this target population?
Geographic scope is Europe.
3. Seminar schedule
Meeting starts : 8h30
8:30 – 9:00
Paul-Ariel KENIGSBERG: Seminar objectives  Presentation of the members of the expert group
9:00- 9:10
Paul-Ariel KENIGSBERG: Scenario overview – “Alzheimer’s disease repelled: lessons from four decades of preventive care in people without clinical signs”
Individual reactions of experts to the key elements of the scenario:  Scientific plausibility, doubts, disagreements, pending questions…
10:10- 10 :25
Marion BERARD (Ecole normale supérieure):  “The value of knowing”
10:25- 10:35
Emilie HERMANT (DingDingDong Association): “The perspective of people living with an announced genetic disease and their families” (Huntington’s disease)
10:35- 10:45
Group discussion about the last 2 interventions
11:00- 11:45
Group discussion: context of diagnosis How to define the target population at-risk for AD, to be screened with the test?  (medical criteria, life situation, lifestyle…)? How to propose the test? How to announce the test results?
11:45- 13:00
Group discussion of situations 1-3 1. Simple diagnosis, effective symptomatic drug treatment  2. Simple diagnosis, moderately effective symptomatic drug treatment 3. Complex diagnosis, effective symptomatic drug treatment
13:00- 13:45
Lunch at the Fondation
Group discussion of situation 4: 4. Complex diagnosis, moderately effective symptomatic drug treatment
14:15 15:00
Tommy Whitelaw (The ALLIANCE): “The perspective of individuals and families facing chronic diseases – practical issues (work, finances, cultural attitudes…)” Group discussion: societal issues
Synthesis of the 4 situations Key elements for the scientific publication
15:30 16:00
Next steps Selection of journal for publication Closing remarks
Meeting ends : 16:00
Thanks for reading my blog, You can now view my 8 short flims here!
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The Heart of #MakingaDifference is not in controlling, it is in unleashing

I was flicking through my Twitter this morning and came across this quote from #Quality2015

 “The heart of improvement is not in controlling, it is in unleashing" Don Berwick 

For me this really sums our ‘Make a Difference‘ campaign and tour.  

For me "The heart of #MakingaDifference is not in controlling, it is in unleashing "

The campaign is about celebrating and I hope unleashing the kindness and understanding of people. Thepeople who sit by our beds, knock on our front doors or who we  speak with  on thephone,

On every occasion we have the opportunity to make a difference to someone’s day or in fact life. It was people who brought a smile to our day, our hearts and created new paths along the way.

Reading the incredible pledges we have received to date, just over 3,600 people have made a personalpledge commitment to make a difference I feel is giving people the opportunity to commit to , to share and celebrate the difference they/we can all make every time we meet someone.

Dementia for me is everyone’s business, it’s not about organisations or buildings, it’s about the people within and the people we meet, on every occasion it’s about people and relationships. It’s about the life and love stories of families all across the country. So I truly hope the people the pledges the life and love stories are about unleashing what matters, who matters and about unleashing the parts we can all play in every moment, every day and every time 

 " No matter what your role no matter what you do you have the opportunity to UNLEASH  your passion and the opportunity to make a difference to the lives of the people you meet "

Thanks for reading my blog, You can now view my 8 short flims here!
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Live on Radio 4 4Thought December 7TH 8:45pm

With great thanks to Sheila Cook and all the team at radio 4 for inviting me to  speak on 4THOUGHT  December 7TH 8:45pm  
4THOUGHT  Is a series of thought- provoking talks in which speakers air their thinking on the trends Ideas,interests and passions that effect culture and society 
i am very hounred and look forward to my live 15 minute broadast on making a difference and #wmty16 
Thanks for reading my blog, You can now view my 8 short flims here!
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Dementia Carer Voices Newsletter December 2016 is Available to Read Here

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Dementia Carer Voices Newsletter November/December 2016

Welcome to the latest edition of Dementia Carer Voices' newsletter

, where you can stay up to date with what the team has been up to over the last two months 

and find out about current opportunities and events where you can have your say. 

Launch of Pollok Community Pledge 
In partnership with Glasgow Clyde College and Humza Yousaf MSP, Minister for Transport and Islands,
 Dementia Carer Voices launched a community pledge in Pollok,

 giving constituents the chance to reach out to their neighbours and help reduce isolation and loneliness. 

Project Engagement Lead Tommy Whitelaw is a life-long constituent of Pollok,
 where he was born and later returned to care for his late mum Joan. 
From the success of our You Can Make a Difference campaign, 
the team wanted to extend the invitation to the community to make a pledge to the whole community of Pollok, not just to people living with dementia and their carers, 

but to their neighbours and wider community.
Chaired by Director Irene Oldfather, the event celebrated pledges 
made by students at the Glasgow Clyde College, 
introduced participants to their local link worker, and the community assets currently mapped on ALISS. Read more about the day here. 

The team were also asked to talk about the community pledge on the John Beattie show on Radio Scotland.


Journal gives platform to carers of people with dementia

This month 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 Glasgow University, 
with the results of their study now available:
Examining Dementia Caregivers’ Experiences,  
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. 
An ALLIANCE summary of the letters analysis is also available 
to download for free here: letter-analysis-summary
Speaking about the recent publication, ALLIANCE Director Irene Oldfather 
said ‘Advancing the rights of people with dementia, and their carers 
who sometimes face extraordinary challenges and barriers in communicating 
their needs and wishes, 
is a just cause. By harnessing the power of carers’ lived experiences, 

the You Can Make a Difference campaign speaks to the hearts of people 
and communities across Scotland, 
with the simple message that dementia is everyone’s business 
and that you have the power to transform 

the experiences of people affected by the condition.”
Honorary Master for health, social care, and policy influence

Our Project Engagement Lead, Tommy Whitelaw was awarded an Honorary DegreeMaster of the University for Health, Social Care, Education and Policy making influence


Speaking about the award, Tommy said 'I am so very honoured and grateful to the Open University for the great honour to have been awarded an Honorary Degree for my work across the UK on dementia and caring.  With great thanks to Peter Horrocks CBE (Vice chancellor), Joyce Cavaye and all at the Open University.'

Read more about the ceremony here. 

Four Thought

Project Engagement Lead Tommy Whitelaw was invited to take part in a live broadcast for BBC Radio 4: Four Thought programme.

"If we really are going to make a difference to each other we have to change the conversation from 'what's the matter with you' to 'what matters to you'".

Project Engagement Lead Tommy Whitelaw

The programme was recorded in front of a live audience at Somerset House, presented by Mike Williams and produced by Sheila Cook. Listen to a repeat of the programme here.


Alzheimer’s Outlook 2016 Prospective Focus Group December 2016 

The Fondation Médéric Alzheimer initiated in 2007 a strategic reflection on how the future context of dementia may unfold in the next decades, in collaboration with international experts. This challenging endeavour implies engaging with uncertainty within limits of scientific plausibility. This prospective reflection is called the Alzheimer’s Outlook. 

Project Engagement Lead Tommy Whitelaw will travel to Paris to lead one of the seminars entitled: The perspective of individuals and families facing chronic diseases – practical issues (work, finances, cultural attitudes). Read more about the Alzheimer's Outlook 2016 Prospective focus group here.

New Year Resolution for ALISS

On the 06 January 2017 the ALISS service is introducing some exciting new changes. From this date, account holders will notice a difference as to how you access the ALISS service and the majority of features will be moved to the new website. This means that the current website will no longer support features such as signing up for a new account, logging in to a current account, adding a new resource, or changing an existing resource. These features will all be available on the new beta website. Read more about the changes in this blog post.

New Carer Positive Resource 

Carer Positive has produced some new resources designed to help employers develop a package of support best suited to carers who are still in work. The resource discusses suggestions and examples on the types of measures employers can take to provide a supportive working environment for carers in their workforce. For more information please click here.


Opportunities to have you say 

  • Did you know that unpaid and family carers of someone with dementia can access free membership at both the Health and Social Care Alliance Scotland (the ALLIANCE) and Alzheimer Scotland? Find out more different ways to have your voice heard.
  • The ALLIANCE's policy team has drafted a response to the National Health and Care Standards which is available to for download here. If you have any comments on our response and would like us to add or amend anything please get in contact with Andrew Strong, who is also available to chat through any comments on the phone: 0141 404 0231. 
  • Healthcare Improvement Scotland published the clinical standards for neurological health services in 2009. A review of these standards will include further scoping work with the clinical community and stakeholders to develop recommendations for the future of the clinical standards for neurological health services. To facilitate this work, a short life working group will be chaired by Healthcare Improvement Scotland with representation from clinicians, the third sector and patients/carers.  Healthcare Improvement Scotland are seeking nominations for two patient or carer representatives. Two meetings will be held at Healthcare Improvement Scotland, Delta House, 50 West Nile Street, Glasgow, G1 2NP on Wednesday 25th January 2017 and Thursday 30th March 2017 1-4pm. 
    ​If you would like to participate in the review of the neurological standards as a patient or carer representative please get in touch with  
  • The next meeting of the Neurological Programme Involvement Network will be 15th December at the ALLIANCE offices, 349 Bath Street. The meeting will be held from 10am to 3pm with lunch included. Email to confirm your place
And Finally..
From the whole team, we would like to wish you a very merry Christmas
 and a happy new year! 2016 has been an incredible year,
with over 11,000 pledges collected as part of our You Can Make a Difference tour.

You can read every single pledge here, and find out how
hospitals, care homes, universities, and colleges are pledging to make a difference
in our pledge case studies.
We know that this can be a particularly difficult time of year for some families, please remember support is available. Further information on how to access help can be found on our website, and you can call the Alzheimer Scotland's 24 hour helpline for free on 0808 808 3000.

Find out more about Dementia Carer Voices 

on our websitetwitter, by e-mail or by phone on 0141 404 0233

United Kingdom

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