A great Honour to be meeting the First Minister on Wednesday

Hi 

With Great thanks to First Minister Nicola Sturgeon for taking the time to meet with me on April 27th 

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 

The ALLIANCE MEMBERSHIP

The ALLIANCE MEMBERSHIP

The Health and Social Care Alliance Scotland (The ALLIANCE) is the national third sector intermediary for a wealth of health and social care organisations. It brings together over 1,900 members, including a large network of national and local third sector organisations, associates in the statutory and private sectors and individuals. 

The ALLIANCE’s vision is for a Scotland where people of all ages who are disabled or living with long-term conditions, and unpaid carers, have a strong voice and enjoy the right to live well, as equal and active citizens, free from discrimination, with access to support and services that put them at the centre. 

 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: shifting 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 service delivery partner, and also foster better cross-sector understanding and partnership.

For more inforamtion and how to join can be found at: http://membership.alliance-scotland.org.uk/

#peopleatthecentre #howtojoin #benefits #makingadifference

Speaking Erskine Hospital on 21st and 27th April.

Massive thanks to our great friend Derek Barron @dtbarron for the kind invite to speak and give 4 talks at Erskine Hospital @Erskine1916 on 21 and 27 April. Tommy had the great honour to speak at Erskine a few months ago.

We are so very honoured to be invited and continue our great relationship with Derek.  We launched our first pledge talks and trees with Derek back in 2015 at NHSAA  along with a short film.

We are looking forward to continue our work together with Derek over the coming years in this new role as Director of Care and linking up with our great friend Janice McAlister @janicemcalister again at the talks.

Erskine is Scotland’s foremost provider of care forveterans and their spouses, Erskine provides unrivalled nursing, residential, respite and dementia care within four homes across Scotland.  An important aspect of ensuring the care we provide is of the highest standard is to ensure our staff have the training, skills and knowledge to support them in delivering compassionate, person and relationship based care.

You can find out more info about Erskine and the April talks from Derek himself.

This month at Erskine we are delighted to welcome back Tommy to speak to our staff.  Following on from the successful delirium/dementia awareness event we held earlier this year the overwhelming feedback was that more staff needed to be involved in the training/awareness session and hear from Tommy.

Tommy and one of our Erskine relatives, along with Janice McAlister (Erskine’s Dementia Nurse Consultant), Dr Claire Copeland (consultant physician) and Janet Leith (Erskine’s Physiotherapist) will be holding two sessions at The Erskine Home, Bishopton and two sessions the following week at our Erskine Edinburgh Home.   The previous sessions held in February saw almost 100 of our more senior staff attend, some from our Edinburgh Home – returning to the Home they started their own pledge tree which can be seen behind Home Manager Alison Payne and NMC Chief Executive Jackie Smith.

The forthcoming talks this month are focused on care assistants, porters, housekeeping, admin staff and any other staff who wishes to attend are also welcome.  Erskine shares Tommy’s vision that each one of us can ‘make a difference’ in the lives of those we touch, which is why we are enthusiastic in rolling out further awareness session to all our staff.

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

Scottish Government has published a new ten year mental health strategy

Taken from our ALLIANCE Web site 

The Scottish Government has published a new ten year mental health strategy, containing 40 actions and ambitions for improving mental health support and services.

 

Addressing the Scottish Parliament, Minister for Mental Health Maureen Watt MSP cited improving access to services and supporting early intervention as key aims of the new plan.

 

Among the 40 actions set out in the strategy for 2017-27 are:

 

• Increasing the mental health workforce in Accident and Emergency, GP practices, police station custody suites and prisons – supported by an additional 800 workers
• Testing out the most effective and sustainable models of supporting mental health in primary care settings
• Reviewing the role of counselling and guidance services in schools to make sure that they are delivering for children and young people
• Setting up a forum of mental health stakeholders that will meet twice a year to help guide the implementation of the strategy’s actions over the coming years
• Improving support for preventative and less intensive services (tiers 1 and 2 Child and Adolescent Mental Health Services (CAMHS)) to tackle issues earlier

 

Launching the new strategy in a statement to Parliament, Minister for Mental Health Maureen Watt MSP said that the strategy had been “fundamentally shaped” by feedback from organisations and people accessing support and services, whose comments had “demonstrated passion and the need for change.”

 

She went on to say “the strategy is just a first step, and I believe working with stakeholders and with MSPs across the parliament it can be built on in the years to come. I believe together we can deliver the mental health support, care and services that the people of Scotland deserve.”

 

Read Mental Health Strategy 2017-27 

 

Read Equality Impact Assessment Results – Mental Health Strategy 

 

Guest Post - Caring For Mum by Allison Tait

This Guest Blog comes from my Friend Allison  Tait  @Allisonrtait 

Let's listen to  what Alison has to say....

            Caring For Mum 

After work we used to pop into Mum on the way home for a chat. However over the last few years Mum has become  more frail. Mum began to fall and lost the ability to write, or remember a PIN number for bank cards but was keen to live in her home she had shared with dad and all it's memories. 

One day I found Mum lying on the floor, her arm had caught on the bed support that helps you get out of bed and was badly damaged. She had a urine infection which probably contributed to the fall and which then lead to delirium. 

The effects were devastating and changed not just Mums life but ours too. She spent the next four months recovering in hospital but never back to where she had been, no longer able to walk or even stand and with the dementia now advanced so she was not able to live on her own.  Difficult conversations with medical staff about not resuscitating were had, and luckily we knew Mums wishes but it is still hard to have that conversation.

  Early on we decided to try and bring Mum home to live with us. My husband was the first to say look let's do this, he grew up with grandparents living in the family home so that wasn't an issue and without his full support it would have been too hard. Mum is now extremely frail with advanced dementia and we had a conversation with her General Practitioner to share mum’s wishes for the future. 

The anticipatory care plan has to be shared with the health care professionals, out of hours, ambulance, carers etc. This is enabling us to care forMum at home and to make her end of life care asdignified as can be amongst her family in a home environment.

Fortunately we had a spare room but it wasn't entirely suitable and the occupational therapist was invaluable in arranging equipment to make the room work. Lots of factors are involved when bringing a relative to live with you. We have a care package to help us: 4 times a day with 2 carers. We just could not manage to continue to work and care for Mum without reliable care. 

My advice to anyone in similar situations is try and get as organised as you can. Simple things, think it all out like who is collecting medication etc. Friends have said they could not manage such intrusion into their home but our view is that it is a very minor inconvenience and you have to cross that bridge if it happens. You don't always know your strength and this is our family. 

The day starts early giving Mum breakfast before the carers come for their first visit, keeping up to date with laundry, all before heading out to work. Practical stuff. It is important to keep on top of supplies that mum needs ranging from disposable napkins to specific food that Mum can swallow. Our kids are away from home but are back regularly and we have encouraged them to still have friends to stay, everyone pops their heads round the door to say hello and a wee chat. 

Occasionally we see glimpses of the Mum we remember but this is happening less and less and now we are really looking for the good moments. Dad and Mum were married for over 50 years, they met when Mum was 15 and started dating when 18 years. They had a lifetime of memories but she seems to have lost them now and never mentions him and doesn't recognise photos of him anymore. 

Hallucinations are common and are difficult for us all as they trouble her greatly but seem to occur less often now she is at home. Mum adores our dog and she pets her when she becomes anxious. Mum will often be forthright in her views on a matter to us but never has anything but kindness to the dog. 

We don't know the future. It could be that we are not always able to care for Mum at home as a result of our own health etc and at some point we may need to look at a nursing home for Mum and I think anyone who cares for someone at home knows this is always a possibility.   

Mums’ General Practitioner is great and the district nurses are supportive when we need their services.There are situations where pain has become an issue and a nurse from the palliative care team has become involved to help us understand how we know when someone with dementia is in pain. It's hard to read Mum for symptoms as someone with dementia loosesthe ability to articulate how they feel.  You just can't assume if they appear well that they are not in pain. 

There are some subtle changes with Mum now more confused and anxious. It's hard to recognise them and you need to know that person very well.  Would we recognise delirium again? I can't say with confidence we will but we are aware that Mum is at increased risk of it occurring again. 

The benefits to having Mum living with us may not be shared by everybody and it may be hard looking at us to understand but there is huge comfort having Mum live with us; it's right for our family.  The challenges are greater than anything we have ever undertaken. 

Watching someone you love fade away was always going to be difficult, we might have run marathons in the past and climbed multiple Munro’s but being a daughter and a carer in these circumstances is something much bigger on a 24/7 basis especially when you open your eye's . 

Allison  Tait 

I love this picture of Mum she would be on her friends boat who did fishing on her way to Tiree to help with the harvest of other friends. Betty loved doing that in her hols. 

Allison  

Read our April Newsletter HERE

New member of the DCV Team

Hi,

I’m William Griffiths, the newest member of the DCV Team. I started three weeks ago, and have been finding my feet with the various projects the ALLIANCE run. I like working with DCV as it’s a great programme and all the days are different from one another. I will be supporting the team’s research work, blog, social media output and writing newsletters.

I attended Tommy’s talk at New College Lanarkshire and was touched by Tommy’s story and how he inspired the audience and highlighted the importance of caring in the health and social care professions.

This month I have written the newsletter for the first time. I hope you enjoy it.

You can read my bio here.

ALLIANCE Director Irene Oldfather speaks at SPSO event

ALLIANCE Director, Irene Oldfather, spoke at the launch of the SPSO’s latest report ‘Informed Consent: Learning from Complaints’ on the 2^ndMarch. The launch event, held in the Scottish Parliament, highlighted cases of inadequate consent procedures in Scottish hospitals and explored the context and reasons for consent not being properly obtained.

Irene spoke about failures of consent from the point of view of service users, especially situations when a person with reduced capacity may have difficulty, but all options should be explored. She highlighted the importance of consulting with the next of kin or welfare attorney of a person with dementia to discuss the person’s treatment and options of care.

She argued that the report went right to the heart of a rights based approach to health and wellbeing. Giving or refusing consent to medical treatment is an essential component of the right to autonomy, and is a key human right. Two people with exactly the same illness might make different choices about their treatment depending on what matters to them. This report can help ensure that staff, families and carers all understand the importance of consent in medical procedures.

EESC Plenary Session 22^ndand 23^rdFebruary

ALLIANCE Director, Irene Oldfather attended the European Economic and Social Committee (EESC) Plenary Session in Brussels on the 22^nd and 23^rd February. There she participated in several events and discussions. Including a debate about the implications of Brexit for Scotland, Northern Ireland and London with the Young Professionals in Foreign Policy group, and a discussion of the future makeup of the EESC Committee.

As the representative for Third Sector organisations in Scotland at the EESC, Irene will be writing a newsletter of her work in Brussels for the SCVO. You can also read her report from the Plenary Session here.

Dementia Carer Voices visits Northern Ireland

Project Engagement Lead Tommy Whitelaw was honoured to speak at the Nursing and Midwifery Conference in Northern Ireland and the Alzheimer’s Society Northern Ireland annual conference on the 8^th March.

One of the audience members at the Nursing and Midwifery Conference drew a sketch of Tommy which we felt captures the ‘You Can Make a Difference’ campaign.

The NHS WM Leadership Awards and a Poem by Dreadlock Alien

On Tuesday February 28^th, our Project Engagement Lead, Tommy, was honoured to give the keynote address at the NHS West Midlands Leadership Academy Recognition Awards.

It was an inspiring event and wonderful to hear of the dedication, passion and stories from all the nominees and winners. Many thanks to Suzanne Harris Director of the WM Academy and all the team for the kind invite.

The event was hosted by ‘Dreadlock Alien’ from the West Midlands, a wandering wordsmith and poet, who brought together the story of the people and day.

After Tommy had left the stage ‘Dreadlock Alien’ presented him with this moving poem that he has written while Tommy was speaking.

This poem captured so many of the things important to Dementia Carer Voices and the work we do.

New College Lanarkshire Pledges to Make a Difference

Massive thanks to Kate Mackay, Lecturer, Clare Flynn, Head of Faculty, Lynn Orr, Craig Ruxton and Margaret Henderson for kindly inviting Tommy to speak to Senior Health and Social Care Students who attend New Lanarkshire College, Coatbridge Campus.

Tommy was joined by Kerry Ritchie from our ALLIANCE Involvement Network, Gerry Power from People Powered Health and Wellbeing and our very own Dementia Carer Voices, William Griffiths. The day was truly inspiring and full of great people from all the staff and students, as we launched the New Lanarkshire College Pledge Tree.

We look forward to hearing how the staff and students get on with the wonderful pledges below. Thank you to all for a brilliant day from all the team at DCV and the ALLIANCE.

“I pledge to always ask people about their lives and family and what they like and mater to them the most.” – Courtney Haley

“I pledge to always ask people about their lives and love stories and what and who matters to them.” – Emma

“I pledge to always listen to someone’s love story.” – Karen Fowler

All the pledges can be viewed on our blog.

If you would like to contact us or make a pledge you can by emailing dementiacarervoices@alliance-scotland.org.uk or tweet us at @DementiaCarerVo

Older People in Acute Care Improvement Programme Delirium Video Links

Wednesday 15^th March marked World Delirium Day. In order to raise awareness and knowledge about delirium the Older People’s Acute Care team has created a series of three videos to complement existing work on delirium care.

The videos could be used in a variety of ways to continue to raise awareness of the importance of listening to family members and to further engage a range of partners. The videos highlight three individual stories told by women of their mothers’ experience of delirium.

In addition, key messages from all three stories are reflected in separate brief video clips focused on First Signs, Causes, Experiencing Delirium and Help & Reassurance. These shorter segments could be used for teaching sessions, to generate discussion as part of presentations and at conferences and exhibitions to match the needs of individual audiences.

All these videos can be viewed on our blog here.

Missing Me by Tracey Shorthouse

This month Tracey Shorthouse contributed a poem called ‘Missing Me’. You can follow Tracey`s story via @TraceyShorty28 and find out more over on her blog.

Please read the poem here.

Future DCV events

Keep up-to-date with events DCV are attending over the next month. To find out more, see our “Get Involved” pageover on our blog.

SAVE THE DATE: What matters to you day 2017

‘What matters to you? day is being held on 6 June 2017, please save the date and plan now for how you might join in on the day.

The aim this year is not only to encourage and support more meaningful conversations, but also to focus on the action that needs to happen in response to these conversations to deliver the care and support people really need and want.

Dementia Carer Voices’, Tommy Whitelaw, represents @ALLIANCEScot on the “What matters to you” steering group and has been working with carers and people with long term conditions to find out what matters to them. Take a look at our “What matters to you” case studies and podcasts.

We know from experience and evidence that the effect of focusing on what really matters to people can lead to improvements in the quality and effectiveness of what we do.  Having a better understanding of what is important to people also helps develop relationships that provide the support and help people need to achieve optimal health and wellbeing.

Last year, ‘What matters to you?’ day had more than 520 health and social care teams across Scotland making a special effort to have more person-centred conversations with the people they work with. In addition to this, more than 100 teams from 13 countries joined our Scottish initiative. You can read more about it in our ‘What matters to you?’ day 2016 report at: http://www.whatmatterstoyou.scot

‘What matters to you?’ day is being supported by the Cabinet Secretary for Health and Wellbeing, the Minister for Public Health and Sport and the Minister for Mental Health and Wellbeing. They will be getting involved on the day as well as sharing messages of encouragement and good practice in the run-up to 6 June.

The Scottish Government and Healthcare Improvement Scotland’s person-centred health and care team will also be supporting health and social care organisations practically to participate in the day by providing advice and resources through the website at www.whatmatterstoyou.scot

To ask questions or find out more, please contact the person-centred health and care team at hcis.personcentredscot@nhs.net