Have your say at the ALLIANCE’s health and social care hustings event

          

Have your say at the ALLIANCE’s health and social care hustings event

 

Monday 4 April, 1:30-3:30pm

 

Quaker Meeting House, Edinburgh

 

Ahead of the upcoming Scottish Parliament election, the ALLIANCE are hosting a hustings event to bring together representatives from Scotland's main political parties to discuss the issues that matter to people who are disabled, or living with long term conditions and unpaid carers.

 

Joining us to answer your questions and set out their respective visions for health and social care within the next term of the Scottish Parliament will be:

 

• Shona Robison MSP - Cabinet Secretary for Health, Wellbeing and Sport, Scottish National Party

 

• Jenny Marra MSP - Spokesperson for Equality, Scottish Labour Party

 

• Miles Briggs - Scottish Conservatives candidate for Edinburgh Southern

 

• Jim Hume MSP - Spokesperson for Housing and Health, Scottish Liberal Democrats

 

• Representative from the Scottish Green Party to be confirmed

 

Everyone is welcome, but spaces are limited so booking is essential.

 

To register for your free place today, please email event@alliance-scotland.org.uk or telephone 0141 404 0231. 

 

Making a Difference for people living with Dementia - Ffion age 9 fromShropshire

Hi 

I am very lucky, every day I meet incredible people on my tour, people who got up yesterday,today and will get up again tomorrow to care for us . 

Inspiring  end of life care lead nurse Jules Lewis and her amazing daughter Ffion are two of them 

Sitting on the the sleeper train from London to Glasgow this story arrived by e mail and I feel so Inspred and proud of Ffion I could get of this train and run to Glasgow 

It's people who change lives ,thank you Ffion for being like mum Jules with so much kindness and caring in your heart

                                             Ffion's Story

Dear Tommy

On Monday the 7th March I talked to the children and teachers at my school in our school assembly, I told them about your work, your lovey mum and your #Tommyontour. I also showed them one for my personalised dementia pledge trees. 

I have  been making these pledge trees for my mummy's work friends I make a different one for each person, I put their name on it and l do my signature, the person then writes their own pledge on the tree.

 I hope my trees make a difference to people who live with dementia.

My lovely pops (grandad) had dementia and l would like more people to understand dementia and always be nice to people with it, my pops always put his thumb up when things were OK. He was so kind he would give some of his food to his favourite blackbird the blackbird visited every meal time. My mummy misses pops a lot.

Here is a photo of my mummy with pops his thumb is up.

                  

Here is a photo of one of my dementia pledge trees, this one is for Hannah.

                             

                           From, Ffion Age 9 from Shropshire.

              

Two Talks Hampshire Hospitals NHS Foundation Trust March 24th

Hi

With great thanks to Donna Green Chief Nurse & Deputy Chief Executive Hampshire Hospitals NHS Foundation Trust 

for the kind invite to visit the trust  meet with the new clinical matrons ,Dementia Specialist Nurses

and give two talks at two events on the day 

 Really looking forward to visiting and meeting everyone 

Thank you Donna and to all involved for the kindness and opportunity

9:30 - meet new clinical matrons 

This is the last day of their induction. speaking 

10:30-12

with Rachel dementia specialist nurse  to meet some of our staff and join the advanced dementia study day that will be running

12-12:30

Lunch

12:30-13:30

Presentation

Speaking  open invitation to all staff, volunteers, commissioners, social care, patient groups

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

Thursday on Panel for NHS England Patient Insight and Feedback conference -

Hi  I  am very honored to be invited to take part in a panel discussion at the Patient Insight and Feedback conference,with great thanks to Kelly Sowden and Neil Churchill for the invite 
you can find our more and register at the links below 

The Patient Insight and Feedback conference is aimed at commissioners and providers working in patient experience and insight who play a role in making a difference through the use of insight data in their organisations.

The conference will cover updates on the national direction, practical talks from industry experts and clear examples of success and good practice. There will also be a ‘patient panel’ made up of a cross section of patients and carers who will share their thoughts on what feedback means for patients and carers and how the NHS can get better at listening to feedback. And, the winners of the Friends and Family Test Awards will be announced and presented throughout the day.

Book your place at http://www.events.england.nhs.uk/nhs-england/1033

For further information, go to https://www.england.nhs.uk/ourwork/pe/fft/pat-insight-conf/ or contact england.friendsandfamilytest@nhs.net.

Kelly Sowden

Friends & Family Test Event Co-ordinator

Patients and Information Directorate | NHS England 

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

Tonight a great Honour Invited to speak at NHS Leadership Recognition Awards

Hi,

With great thanks to Chris Lake ,Ramima Khanam & all at the NHS Leadership Academy for the kind invite and great Honour to speak at and later  hand out one of the awards at the National NHS Leadership Recognition awards on the evening of March 8^th 

I feel so very honored to be invited and look forward to a very inspiring evening celebrating people who play a part in the very best of patient care 

Thank you NHS Leadership Academy for the kind opportunity  to take part and attend       

Tommy                                         

Web: http://www.leadershipacademy.nhs.uk/

Twitter: @nhsleadership

                          

        The NHS Leadership Recognition Awards

The NHS Leadership Recognition Awards is one of the most prestigious, high profile events in the healthcare calendar. With up to 300 influential healthcare leaders nationally and from across the country, including the Chief Executive of NHS England, Simon Stevens, coming together to celebrate and recognise outstanding leadership practice that results in improved patient care from all over England.

The National NHS Leadership Recognition Awards celebrate outstanding leadership practice and exemplar leaders at all levels and across all professions in the NHS who have gone above and beyond their allocated role and during times of austerity to improve:

·         the quality of care received by the patients at their most vulnerable

·         patient experience of the NHS

·         staff engagement, thus boosting morale and increasing productivity and positively impacting on patient outcomes

·         safety of staff and patients alike

At the NHS Leadership Academy our philosophy is simple – great leadership development improves leadership behaviours and skills. Better leadership leads to better patient care, experience and outcomes.

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

Guest Post ALLIANCE Policy and Information Manager Andrew Strong - Infive years time…

This week’s blog post comes from my friend and colleague ,ALLIANCE Policy and Information Manager Andrew Strong, and his thoughts on the changing Health and Social Care scene, as well as the launch of our manifesto ahead of the 2016 Scottish Parliamentary election.

In five years time…

The start of a new election campaign always brings with it the hope of a renewed ambition and a different path for the future.  Over the five years since we last voted (general elections, referenda and X Factor finals excluded) we’ve seen a definite shift in the perception of unpaid carers, people with long term conditions and disabled people living in Scotland.

From the growing level of concern about the processes used to decide eligibility for social security and the new powers of the Scottish Parliament, to the often controversial implementation of self-directed support and choice and control over social care – the rights of our members have been front and centre of the political and policy narrative in the last five years.

Amongst this have been some particularly positive developments.  For example, the Carers (Scotland) Act, which has now passed through Scottish Parliament and into law, clarifies and underlines the rights of carers and how local authorities must plan support.  On a personal level, I was delighted to see the inclusion of new duties related to emergency planning – long pursued by older carers of people with learning disabilities in particular.

The Scottish Government has also sought to integrate health and social care, creating 31 new Health and Social Care Partnerships designed to deliver on 9 person centred outcomes.  Whilst it’s still in its infancy, new Partnerships go live on 1 April 2016, the signs are positive of a step change in the design and delivery of support and services with engagement of the people who use them, carers and the third sector in decision making processes.

There is, however, still so much to do.  That’s why the ALLIANCE has published 2 Million Expert Voices, our new manifesto for health and social care, outlining 18 asks of the new crop of MSPs.  It aims to strike a balance between the need to prevent issues before they arise, creating a socially just Scotland and ensuring the voice of lived experience is well heard.

To support it we would like to hear from you.  What are your priorities for the future?  Which of our 18 asks are you most in support of and why?  Let me know by email at: andrew.strong@alliance-scotland.org.uk along with a photo and we will include on the Have Your Say section of our new 4in10 manifesto website alongside ALLIANCE members and Holyrood candidates.

We don’t yet know what the next five years will bring – but in advance of May’s election we need to make sure our voice is heard.

blog comes from Richard Baker, Early Stage Dementia Policy Officer forAge Scotland

This weeks guest blog comes from Richard Baker, Early Stage Dementia Policy Officer for Age Scotland. Richard met the team this week and made a pledge to make a difference.

“I pledge to work to raise awareness of early stage dementia. I want to play my part in ensuring more people are diagnosed sooner and supported to live well with dementia”

                                

Age Scotland has recently established an Early Stage Dementia project with funding from the Life Changes Trust and is looking forward to working with the ALLIANCE to support people with dementia. I recently joined the project as Team Leader and Policy Officer and was pleased to be able to meet the team at the ALLIANCE to hear about the fantastic work of Dementia Carers Voices. We discussed how working together we can raise awareness of the signs and symptoms of dementia, and how we can ensure people with dementia can receive the support they need in the early stages.

As part of the Early Stage Dementia project, we will be improving Age Scotland’s information and advice resources, by ensuring that our materials are suitable for people with dementia and their friends and relatives. We are also offering free training to charities and groups who support older people, or people with dementia – this covers a variety of subjects including signs and symptoms of dementia, and how to live well with a diagnosis.

We want to ensure that when people have been diagnosed with dementia they, and their friends and family, know where they can go to for support. Through partnership working with Dementia Carers Voices on this key part of the project we will promote greater awareness of the support services people with dementia can benefit from.

We will also work to improve public knowledge on how healthy living can have a significant impact on both preventing dementia and slowing the onset for those living with the condition. Research has shown that smoking, diet and levels of activity can all increase the risk of developing dementia, and we want to get that message out across Scotland.
Dementia Carers Voices has already had a huge impact in ensuring more people know what life is like for people who are affected by dementia. It was fantastic to hear about the tens of thousands of people who have had their awareness of dementia raise by the success of Tommy’s Tour. But despite the fantastic work currently going on, and higher rates of diagnosis in Scotland, there is still so much to do. Even now around a third of people who have dementia in Scotland do not have a formal diagnosis, and we know from speaking to our member groups there is still a challenge around ensuring people are confident about seeking support. That is why we need to work together to tackle stigma which still remains around dementia, and to encourage more people to get an early diagnosis.

To find out more about the work of Age Scotland’s Early Stage Dementia project, to arrange training or to let us know what information you would find helpful you can contact the team on ESDteam@agescotland.org.uk or call 0333 32 32 400

viewpoint - Ashleigh de Verteuil reflects on the Scottish Government's recent proposals for a new dementia strategy.

In our latest viewpoint blog, Ashleigh de Verteuil of the Dementia Carer Voices team at the ALLIANCE reflects on the Scottish Government's recent proposals for a new dementia strategy.

The Scottish Government has recently published its Proposal for Scotland’s Third National Dementia Strategy based on written submissions, and from the National Dementia Dialogue events held in 2015/16.

Some of the key commitments in the proposal are:

Continue to focus on our national and local human rights based approach to improving dementia diagnosis rates and services

The Charter of Rights PANEL approach to human rights for people with dementia and their carers has been championed by the ALLIANCE’s Dementia Carer Voices project. This is, therefore, a welcome commitment and I’m glad to see a rights based approach woven throughout the new strategy. It’s important that this is seen on the ground though and it will be interesting to see with the integration of health and social care how services will deliver and indeed, safe guard this.   

Working collaboratively with the new integrated joint boards to support locality planning and re-design of dementia services

As the Health Secretary, Shona Robison, said ‘local areas making local decisions about their local services.’Health and Social Care integration should be welcomed, but one caveat to the Integrated Joint Boards (IJBs) is that despite the fact Third Sector Services design and deliver a significant proportion of dementia support and services across Scotland, third sector representatives on IJBs don’t have voting rights. Making sure this role is acknowledged may be a wider task to be considered as part of this strategy.

Prioritising policy around dementia palliative and end of life care

The proposals reflect the strong sentiments of the dementia dialogue report that there should be a greater focus on dementia palliative and end of life care. This was something I have become keenly aware from attending the National Conversation events in which every table discussion I joined seemed to find its way to the importance of early intervention and preparatory planning.

The importance of planning early on is recognised by the ALLIANCE but it is important not to overwhelm people with too much information at the point of diagnosis. Everyone has a different response and different needs, and communication and continuous conversations are vital to ensure that people are informed and supported at the appropriate time for the individual to make decisions on end of life care and arrangements.

Furthermore, it is essential that unpaid carers are recognised for their expertise. Given the changing nature of the condition, particularly toward the end of life, plans are subject to change and so it is essential to be able to be flexible and adapt to provide the best possible care.

The Proposal explicitly says it is not supposed to an exhaustive paper, but a strong signal of what the major elements of dementia policy should be over the next three years, so we shall have to wait and see whether or not the full strategy will elaborate more on the finer details such as the new duties placed on local authorities through the Carers Act. What is encouraging is that the Proposal references the ALLIANCE’s Dementia Carer Voices project as a group which they should continue to work with in order to have people with lived experience at the heart of the strategy.

You can read the full Proposal for Scotland’s National Dementia Strategy here, and the National Dementia Dialogue Engagement Report here.

Ashleigh de Verteuil

Policy and Information Intern, Dementia Carer Voices

The ALLIANCE

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

Tuesday Speaking Bolton NHS Foundation Trust and Bolton University Nursing

                                               

Hi

Very much looking forward to returning to Bolton On March 22nd for two talks 

The first will be in the afternoon at 

Bolton University Nursing Students 2pm-3:30pm followed by Q&A

and then  over to the hospital to speak at the 

Staff - Carers and families Group  6pm-7pm at Bolton Hospital followed by Q&A

I have made some great friends from across the trust and i am really looking forward to returning and seeing them again 



With great thanks to 

Christopher Davidson Dementia Nurse Specialist,

Ben Roberts @ben_m_roberts_1  Head of PbR & Income Bolton NHS Foundation Trust 

Fiona Murphy @fionaDmurphy Assistant DIrector of Nursing and 

Jayne Hardicare @createyourself9  Senior Lecturer / Prog Lead Nursing /University of Bolton.


For the great teamwork and support to make this happen


Thank You

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

Meet The Team - Dementia Carer Voices

Dementia Carer Voices, managed by the Health and Social Care Alliance Scotland (the ALLIANCE) is a Scottish Government Project funded project to 2016 to engage with Health and Social Care professionals and students to promote a fuller understanding of the carer journey, provide a platform where carers can express their views and experiences of caring for a loved one with dementia and to harness the awareness raising activity undertaken by Tommy Whitelaw.

The project:

• Captures the experiences of carers across Scotland with a view to informing future policy and service provision
• Raises awareness of the issues around caring for someone with dementia including among health and social care professionals, students and the wider public
• Highlights the role of carers as natural resources; carers as people with needs; carers as people with independent lives
• Empowers carers by providing information based on the Charter of Rights and Carers Strategy about caring for someone with dementia

Meet the team:

Director Irene.Oldfather@alliance-scotland.org.uk

Project Engagement Lead Tommy.Whitelaw@alliance-scotland.org.uk

Policy & Information Assistant ashleigh.deverteuil@alliance-scotland.org.uk

Administrator Laura.McCulloch@alliance-scotland.org.uk

Telephone – 0141 404 0233

Irene

I am currently Director at the ALLIANCE leading on Dementia Carer Voices, Prescription for Excellence, Care Opinion and Active Ageing.  Chairing the Scottish National Dementia Carers Action Network (NDCAN) and a member of the Scottish Government Mental Health Strategy short term working group.  I am a member of the Scottish Government Dementia Forum and Strategy and Implementation Group.

Formerly as a Member of the Scottish Parliament, I set up and chaired the Cross Party Group on Alzheimer’s and Dementia which drafted and agreed the Charter of Rights for People with Dementia and their Carers.   As an MSP for 12 years I actively campaigned on the rights of older people and was the first ever Member of the Scottish Parliament to be nominated and shortlisted for Dod’s 2009 UK Parliamentary Award for services to Older People.  My recent publications include, Digital Technology 2014, In Good Faith Building Compassionate Communities July 2013 and PATH to Active Ageing 2012.

I was educated at Strathclyde University, where I obtained an Honours degree in Politics and a post graduate MSc by Research.

I am currently chair of The European Patients’ Academy on Therapeutic Innovation (EUPATI) UK National Liaison Team (NLT). I have been nominated by parliament to the EESC.  My passion is to improve the lives of people with dementia and their carers and to raise awareness of the importance of rights based approaches to ensure vulnerable people are treated with dignity, compassion and respect.

Laura

As Administrator for Dementia Carer Voices my role involves a wide range of duties from organising events, coordinating diaries and first point of contact for the team. I like that no two days are the same and working as part of a team.

I joined the ALLIANCE in March 2013 from Devro (Scotland) as the Quality Systems – Administrator, the world of how sausage skins were made was all new to me :) but that was the stepping stone into the world of Administration.  Before Devro I worked for Hilton Worldwide as a Data Entry Personnel, mainly operating their website, using various operating systems.

My biggest achievements to date would be obtaining my second class honours degree in Business and Management from Caledonian University in 2008 and passing my driving test, although not sure who was more excited for that one me or my dad as he now gets to teach me all about cars.

Things I like to do are yoga, dressmaking, cooking/baking and spending time with my two beautiful nieces.  My dreams are to learn to knit.

Ashleigh 

I am the newest member of the Dementia Carer Voices team, joining the ALLIANCE in November 2015. I’m the Policy and Information Intern, working to ensure the voices of carers are used inform best practice and future policy. I’m extremely proud to be a part of the team working on such an important project, and enjoy coming into work every day.

I have recently finished my MSc in Social Research at the University of Edinburgh although originally I’m a historian by training. I have always been interested in how policy affected the lives of everyday men, women, and children which inspired me to retrain as a social researcher. I have a particular interest in how the research process can best support practice and service improvement.

One of my ambitions is to knit a jumper. 

Tommy

For twenty years I worked in the music industry firstly as a band assistant then Tour Manager and Global Merchandiser from 2007 till 2012.  I was a full time carer for mother Joan who had Vascular Dementia.

Caring for my mum the basis behind my first venture in to the world of awareness raising – the ‘Tommy On Tour’ campaign, which involved collecting life stories and letters from people across Scotland caring for a loved one with dementia. This is something I am passionate about promoting as I build on my previous awareness raising work, as Project Engagement lead of the Health and Social Care ALLIANCE’s Dementia Carer Voices Project.

I am very honored to have been awarded British Citizens Medal 2015  ,Honorary Master at the Open University 2016  ,Age Scotland Campaign of the year 2013,Health Service Journal Patient leader 2015,NHSGG&C patient champion 2013,Herald Scotland finalist campaigner of the year 2013   

I have just rediscovered my love for music and I am working hard trying to get fitter.  I absolutely love the work I do and in many ways is a continuation of my previous life with bands but now it’s with and for carers.  I work with a great team of people and hope we can continue to keep representing the lives and loves stories of the people were so very lucky to meet every day meet.   One of my ambitions is to learn to knit before my team mates Laura and Ashleigh .

Dementia Carer Voices engages with Health and Social Care professionals to highlight the importance of a person-centred approach to dementia care, with carers as equal partners. If you would like to organise an event for your staff or colleagues, please contactdementiacarervoices@alliance-scotland.org.uk .

About the Health and Social Care Alliance Scotland (the ALLIANCE)

The ALLIANCE is the national third sector intermediary for a range of health and social care organisations.  The ALLIANCE has over 1,000 members including large, national support providers as well as small, local volunteer-led groups and people who are disabled, living with long term conditions or providing unpaid care.  Many NHS Boards are associate members and many health and social care professionals are Professional Associates. Commercial organisations may also become Corporate Associates.

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.

For more information, visit http://www.alliance-scotland.org.uk

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

Pressure ulcers: making sure we get it right Have your Say -consultation event

Pressure ulcers: making sure we get it right

One of the roles of Healthcare Improvement Scotland is to set standards of care for patients accessing health and social care services across Scotland. We do this by working with staff, patients, volunteers, carers and families.

We are currently developing standards to ensure that people who use services for the prevention and management of pressure ulcers have the same high quality of care wherever they live, whoever they are and whatever their personal circumstance.

To do this we are looking for feedback from people who have experience of pressure ulcer care, and staff within health, social care and independent healthcare services. The ALLIANCE and Healthcare Improvement Scotland are holding a focus group on Thursday 17th March from 2:00-3.30pm, at the ALLIANCE in Glasgow. 

We will share information about the draft standards for pressure ulcers that we have developed with our project group. We would like to hear your feedback and comments about them. We will also be asking NHS boards and other health and social care providers for their views throughout our consultation period which is due to run between March 2016 and April 2016.

Focus group on pressure ulcers – what to expect?

            ·         This is entirely voluntary and it will not affect any current or future treatment or care that you receive.

·         All comments will be anonymised. We will not be asking for any personal information such as name, age or place of residence.

·         The information you share at the focus group will be discussed with the project group, and will be used to develop the final standards.

·         The information will be added to the feedback from NHS boards, and other health and social care providers, and will form the consultation report.

We will share a copy of our final standards and our consultation report on our website, due to be published in Autumn 2016.

We would like to involve as many people as possible in this work. Taking part provides an opportunity to influence the way NHS Scotland provides services for the prevention and management of pressure ulcers.

For more information, please contact:

Gillian Fergusson on 0141 404 0231 or email gillian.fergusson@alliance-scotland.org.uk