Carers Week with Dementia Carer Voices

Another busy week for the team sees our UK Project Engagement Lead, Tommy was privileged to be invited to host and speak at the Cambridgeshire and Peterborough “Pride in Our Carers” Awards 2017 on Tuesday. Follow the Trust on Twitter for more updates @CPFT_NHS

Tommy presented in the morning, speaking about the project and his caring experience. Then the afternoon saw him host the “Pride in our Carers” Awards Ceremony.  It was a great honour for Tommy on such a poignant week.

Some of the categories included:

  • Carer of the Year,
  • Young Carer of the Year,
  • Carer Friendly Social Care,
  • Carer Friendly Employer.

Congratulations to all the deserved winners.

Special thanks to Dr Helen Brown, CEO of Carers Trust Cambridgeshire and Annette Reader, PA to the Executive Team for arranging and inviting Tommy to a wonderful and inspirational day.

You can read the latest news piece from Cambridgeshire and Peterborough NHS Trust.

 

 

Posted in News

St Clare`s Hospice – pledge to make a difference

Special thanks to Philip Ball, Director of Patient Care for kindly inviting Tommy to speak at St Clare`s Hospice on 7 June 2017.

Tommy has met a Philip a few times over the years at different events and it was great to be invited to speak at the Hospice and meet everyone.

Big Thanks also to Tracey, Giovanna , Emily, all the team and to all who attended the 3 talks over the day.

Thank you for a great day full of kindness, care and the wonderful pledges below.

Team #DCV 🙂

I pledge to remember to use hello my name is, then ask what matters to you today and listen to the answer. Add a new “tree” to workplace.

Philip Ball – Director of Patient Care at St Clare`s Hospice.

I pledge to support my neighbour who is caring for her partner who has a recent dementia diagnosis.

Julia Dale – St Clare`s Hospice.

 

I pledge to always listen and learn more about everyone who I work with.

Emma Sugarman – Communications Officer – St Clare`s Hospice.

 

I pledge to never stop caring or loving anyone with dementia.

 

I pledge to keep remembering why I come to work and to ignore the governments targets. To ask managers to remember this.

 

I pledge to hold the hand of the carers and their loved ones. To promise them that I will listen to what they would need. Not what works best for me.

Pushja Misty – Volunteer IPU

 

I will take time to ask my dear friend what matters to her most in caring for her father and how can I help.

Tracey Hammond – Director of Organisational Development.

 

I pledge to ask about peoples love stories.

Shelley Leigh – Therapy Assistant at St Clare`s Hospice

 

My pledge is to continue to listen, support and facilitate open, honest communication between people with dementia and their carers and health professionals.

Charlotte Stradler – Speech and Language Therapist.

 

 

Posted in "You Can Make a Difference" Pledges

Now its time to act!

Following on from the #WMTY17 Day last week we have a poignant guest blog today from our colleague Marianne Brennan, Partnership and Practice Programme Development Officer, Self Management Team.

Tuesday 6th June 2017 celebrates ‘what matters to you day’ which is a day filled of mixed emotions on my part. I am a big advocate of the day and believe this question can make a difference to life of individuals when it’s carried through to its fullest not only on the 6th June but throughout the year. However, on my own personal reflection, I have my doubts about it.

Over the past couple of months I have been in and out of hospital visiting my uncle. On my first visit to the hospital, straight away my eyes went to the ‘What matters to you’ board behind his bed. I was excited to see it live although saddened to see that after a week of my uncle being in hospital, his board was left blank. I asked him if he knew what it meant and he had no idea. The nurses on his ward work tirelessly and I cannot fault anyone in the care he received while in hospital, but I couldn’t help think why hadn’t they asked the question?

After a few weeks my uncle was readmitted to hospital and yet again the same experience, the board was still blank. For a while I thought about asking the nurses but didn’t want to make anything awkward in regards to the care my uncle needed so blank it was. There are many things that matter to my uncle as with any individual and with a huge push for the campaign going on around me the actual practicalities still seemed far off.

On the third admission to hospital, unfortunately to say goodbye to my uncle, again my eyes went to the board and it was filled in! I was silently overjoyed to see that on his final time in hospital someone had taken the time to ask him what matters.

Over the past couple of weeks I’ve had time to reflect and explained to my aunt that I was happy his board was filled in, things like Lucozade and his wife were written on the board and so was the fact he needs his esure shakes each morning. I was yet again met with disappointment when my aunt explained that every day when she visited for the five days since the board was filled in not once was he given his shake until my aunt arrived at visiting time and asked the nurses. He was never a man to ask for help and didn’t want to hassle anyone but I just wished that after taking the time to ask what matters that the answers he gave were valued.

To me, the experience with my uncle felt like a tick box exercise. I understand the time pressures on health professionals but if we have such a wide spread campaign supported by the Scottish Government and medical professionals from around the world, are we sure that this campaign is truly making an impact on the lives of individuals? I still strongly support the campaign but I wait in anticipation to find out about impact it will make…

 

Posted in 'Viewpoint' Blog Posts

Award winning Arora dementia friendly community project

Kicking off a new week with a guest blog from Paula at the Arora Project.  Lets see what Paula has to tell us….

I’m Paula Brown, Project Co-ordinator for Arora, the Dementia Friendly Community at An Lanntair Arts Centre in Stornoway.

We have been funded for three years by Life Changes Trust to investigate bilingualism in dementia through arts based engagement and we have been fortunate enough to have other pots of funds for specific work from other funders such as Alzheimer Scotland, the NHS, Wm Grant Foundation and DEEP.

An Lanntair has a wealth of art experiences to offer the entire community and I am extremely fortunate that my job is to share that with people who have dementia and those in their circle of care. This could mean hosting a dinner where people living with dementia share experiences and thoughts with the An Lanntair team to feed back about programming and requirements for the building (lighting and signage etc), it could mean adapting an exhibition or putting on special dementia friendly performances or screenings of films. It might mean screening films in care centres, or offering new ways of watching local archive film on a tablet computer which is shared on the mobile library bus.

The Artists that we work with are selected for their empathic and collaborative ways of working with people and this way, we have created some incredible works of art together, from very personal quilts to an immense piece of public image art in a care centre and hospital.

 

 

Some of our work is about including and involving very isolated people to participate in projects. For example, at a local hospital, the community pulled together to renovate a ward garden and we were able to work with people living with dementia on the ward to select colours for paint and to select seeds for planting and to do some planting, despite the conditions of advanced dementia. Tasting, picking up and eating berries, pointing, facial expressions and smelling were all ways in which people on the ward were able to contribute. Isolated people at home are able to book our memory boxes and archive film tablets as easily as they do a library book.

Collaboration is at the heart of everything we do. Collaboration with a person on an individual level, collaboration with families, carers, paid carers, collaboration with Museums, Libraries, Charities, NHS teams, Universities and Artists, this is how we achieve our best work. Our NHS Hospital ceilidhs are a great example of this collaboration between the NHS, Alzheimer Scotland and ourselves.

Supporting carers is vital. We often meet carers through working at the Day Centres, through meeting them at community sessions, through carers groups and we offer crafting and arts opportunities and the chance to work with an Artist. We often see carers coming along to sessions and cinema screenings. We provide carers kits to supply personal time activity and meet with them once a month for dinner. We are also there for carers when through a difficult personal decision or through a decision made by others, the caring role changes and the cared for person moves to a care setting. Because we work closely with people in care settings too, I was reminded this week how important the whole community approach is, when a lady thanked me and said she was able to feel more positive about the move when she knows we will continue to offer sessions and visits just as we did within the community and in hospital.

 

We value the knowledge and experience of the people we work with – our Woven Communities project with University of St Andrews brought forward some amazing insights for Museums to share with the community and for basketmakers and academics to learn about how techniques were employed, given eagerly by people living with dementia either through demonstrating with hand memory or through being able to tell us.

One key point that we have discovered through studying bilingualism is that language is never just one or two – we all communicate in so many ways and that artistic communication has proven to be particularly valuable for people with dementia losing their ability to communicate through words. Dance, imagery, collage, planting, even making and preparing food has offered methods of self expression that we have valued together immensely.

This project aims to leave a legacy of a record of ways of reaching a person on an emotional and personal level that supports them to communicate and express that emotion and person and ways to maintain community and cultural connections.

Please take a look at our blog on http://dfclanntair.wordpress.com or get in touch at paula@lanntair.com for more information.

 

Posted in 'Viewpoint' Blog Posts

#DAW2017 Western Isles Tour – Day Five

Well today is the last day of our tour of the Western Isles in partnership with NHS Western Isles.

Last night I had the great pleasure to attend the 30th anniversary of the Alzheimer Scotland local services and was so very honoured to spend time with some people who founded the local services right through to present day.

Today as I head for home, I leave with warmth I’m my heart and memories of the beautiful Scottish Islands and how kind the people are.

Some thank yous…..

Firstly to Chris Anne Campbell, Nurse Director NHS Western who kindly supported the tour, Denise Symington, Patient Focus & Public Involvement and Elizabeth Selby, Dementia Nurse Consultant NHS Western Isles who put the itinerary together and looked after me with such kindness and care.  And all the wonderful staff from so many different roles across NHS Western Isles who I met along the way.

Marion and all the team from Alzheimer Scotland, the people, the families, the volunteers and the walkers.

Big thanks to Fiona McQueen, CNO for Scotland, for the support and personal message to share at the talks.

Thank you all for the dedication and passion to support and care for others.

Thank you for the pledges.

Thank you for the warm welcome.

I travel home feeling grateful and inspired and look forward to returning this September for the next talks.

Thank you from all the DCV team.

I leave you with some photos of the people and places who have brought a smile to my ❤

You can read all about day one-four of the tour here.

Tommy

 

 

 

 

 

Posted in Events

#DAW2017 Western Isles Tour – Day Four

So I  sat down by Stornoway Harbour last night reflecting on a wonderful 3 days so far.

I have witnessed Scotland at its beautiful best the scenery the backgrounds and the people. This western Isles tour has been good for me personally for my heart and my soul.

This morning after a lovely walk around town I headed off to take part in the Alzheimer Scotland Memory March around Stornoway.

I was so proud to be invited say a few words to all who were taking part.

 

The walk was wonderful with great conversations and for a great cause.

It was so lovely to catch up with an old friend Heather who I met in Glasgow when I first started campaigning and Heather was studying in Glasgow.  Heather has been playing a part in great work including setting up   the ceilidh that takes place for staff and patients who attended yesterday.
A lovely final day in the Western Isles but not our last blog post I will share more thoughts and final thanks tomorrow with a look back at the tour.

I will leave you with a wee photo, playing Balloon Football with Heathers son Noah.


I think this sums up that when we come together we learn together we smile together and bringing people together helps with the loneliness that appears in so many letters that we receive.

And one of the wonderful Lewis pipe band I met on the way back to my hotel.

Thank you,

Tommy

Posted in 'Viewpoint' Blog Posts, Events

What Matters to You Day 2017 – #WMTY17

Today is ‘What Matters to You?’ Day 2017 – a chance to flip the conversation from ‘What’s the matter with you?’ to ‘What matters to you?’ Individuals and organisations across Scotland are joining in and Dementia Carer Voices is marking the day with a series of activities and posts.

wm2u_logo

 

Project Engagement Lead, Tommy Whitelaw, represented the ALLIANCE on the WMTY national steering group and has been deeply involved in spreading the message and raising awareness of the day in colleges, universities, hospitals and care homes throughout the country.

We have collected our blog posts, interviews, podcasts, photos and other activity to mark the day. Please click on the links below to see our work for WMTY day. #WMTY17

WMTY Statement

WMTY

You can also share ‘What matters to you?’, by downloading the document below, taking a picture of yourself holding it and tweeting us at @dementiacarervo

Top influencers on the day

@ALLIANCEScot take part in #WMTY17

The ALLIANCE staff, volunteers and members have shared with us over the last few days what really matters to them.

 

Posted in Events