Tag: communication

Life Without Communication

Stroke Association shares survey to mark Aphasia Awareness Month

The fear of being unable to communicate has been laid bare in a new survey of over 163 people across Scotland. Research conducted by the Stroke Association reveals that more than a third of the respondents (36%) can’t imagine living in a world where they couldn’t communicate. 

A world without communication is an everyday reality for the 350,000 stroke survivors like Tom Middlemass (61), from Edinburgh, in the UK living with aphasia – a communication disability, which is most commonly caused by stroke. 

The research has been carried out by the Stroke Association to mark Aphasia Awareness Month and to encourage stroke survivors living with aphasia to use the information and support that’s available from the charity so they can navigate the challenges aphasia brings. 

Aphasia can affect a person’s ability to speak, read, write and use numbers, but it does not affect intellect.

The charity’s latest survey also reveals people’s biggest fears if they lost their ability to communicate:

  • Over a fifth (23%) of people feared not being able to carry out everyday activities
  • Over a quarter (26%) of people feared how it would affect their relationships with family and loved ones                   
  • Around one in five people (23%) feared being lonely
  • 10% feared not being able to express their emotions
  • 6% feared losing their job.
  • 4% feared l losing their friends.

Tom Middlemass from Edinburgh had a stroke at the age of 52 in 2016.  He couldn’t move or speak at first. At the time, he had an overwhelming instinct to get up off the floor, but couldn’t make himself understood. 

Tom says: “It took three weeks for me to be understood properly and it was scary. I used a pen and paper at first to write down what I wanted to say and felt stupid not being able to get the words out. 

“Shopping was a challenge as I found numbers hard to understand.  I couldn’t socialise with friends, or go to the football with my daughters, I just felt embarrassed and unable to cope. Having relied on meeting in person and talking face to face, it was impossible to do so now.” 

Thankfully, Tom is now mobile and able to talk. He volunteers for the Stroke Association, which allows him to give hope to others. Tom believes that there can be life after stroke and it can be good again. 

He adds: “I would encourage everyone with aphasia to seek help. Find information, get advice and use the tools and services which charities like the Stroke Association provide, to help you with your recovery.”

The charity’s survey also highlighted how vital communication is to our everyday lives:

  • Over half (52%) of people said they rely most on meeting face to face or talking in person 
  • Just under one in five people (19%) rely on email, text or instant messaging
  • Under one in ten (7%) depend upon talking on the phone 
  • Under one in ten (6%) rely most on reading for work or leisure.

For many stroke survivors with aphasia, these commonly used communication tools are either a challenge or impossible to use.

John Watson, Associate Director Scotland of the Stroke Association said: “Aphasia is incredibly common after stroke, affecting one in three stroke survivors.  It robs you of the ability to talk to loved ones, to do everyday tasks such as go shopping, use public services or get online – things we all take for granted. People with aphasia often feel lonely and isolated too, which can impact their relationships.

“But there is hope and the brain can recover and adapt. Stroke survivors with aphasia can make improvements as well as developing alternative ways of communicating.

“Get in touch with the Stroke Association to find out how we can help. We’re here to support people with aphasia to rebuild their lives and to regain their confidence and independence.

“Our ‘Getting Online for People with Aphasia‘ guide equips you with the skills you need to get online, keep in touch with family and friends and to connect with the stroke community. Support is also available through our stroke support groups, My Stroke Guide and communication support service.

“It’s also incredibly important for the public to be aware of what aphasia is, the things to look out for and to learn strategies that might help those with aphasia living in their community. We all have a part to play in adapting our communication to be inclusive for all.”

If you or someone you know is living with aphasia, visit stroke.org.uk/aphasia for information and support.

The ‘Getting Online for People with Aphasia’ guide is available at: www.stroke.org.uk/aphasiaonline 

My Stroke Guide is available at: https://www.stroke.org.uk/finding-support/my-stroke-guide

Dad runs two marathons in two months for charity that helped his daughter communicate again

Robin Gibson from Edinburgh, has signed up to take on the Brighton Marathon and London Marathon over the next two months to raise money for The Children’s Trust. Robin was inspired to take on the challenge after his daughter, Floss, received brain injury rehabilitation at the charity’s specialist centre.

In May 2019, Floss was celebrating her 17th birthday in her hometown of Barnard Castle when she was a passenger in a high-speed car accident.

Floss suffered a devastating brain injury which put her in a coma for a month and with limited awareness of the world around her for nearly a year. Prior to the accident, Floss was a fit and healthy A-level student and keen rugby player working towards a career as a lawyer. The accident left her with a severe brain injury, unable to walk, communicate or feed herself.

Nine months after her brain injury, aged 18, Floss moved to The Children’s Trust in Surrey where she received a combination of intensive physio, speech and language, occupational therapy, aquatics, play therapy and music therapy to try and relearn the skills she had lost.

Floss also attended The Children’s Trust School, a non-maintained special school supporting children and young people aged 2-19 with a wide range of needs.

Robin said: “With the first week of focused rehabilitation, my daughter showed responses not seen before and, three months later, she was clinically declared conscious and on the road to recovery.

“In the following nine months, The Children’s Trust helped my daughter to start to communicate, start to look after herself, make her first steps in trying to eat and even put her back on her feet with a few tentative and supported steps. Most importantly, The Children’s Trust gave my daughter her smile back.”

Robin has already reached his target of £3000 and now aims to continue his fundraising efforts and raise the bar even further.

He added: “I’m very excited to take on this challenge and raise vital funds for a charity that has given our family so much. We’ll be forever grateful for how the staff helped Floss with her recovery and I’m pleased we can give back in some way.”

If you would like to take on a challenge in aid of The Children’s Trust, the UK’s leading charity for children with brain injury, visit: 

https://www.thechildrenstrust.org.uk/events

To donate to Robin’s Just Giving page, visit: 

https://www.justgiving.com/fundraising/robin-gibson3

Learning how to live well together: Carnegie UK announces new strategy

I am delighted to share Carnegie UK’s new strategy: ‘Learning how to live well together: our strategy for change’.

Improving wellbeing has been Carnegie UK’s mission for over 100 years. With our new strategy and accompanying rebrand, we are signalling a refocus on that core purpose, putting it at the heart of all of our work.

We believe that if there was ever a moment for a wellbeing organisation to lean into its mission, then that moment is now. Our new strategy is centred on our model of collective wellbeing: what is required for all citizens to live well together.

Achieving collective wellbeing requires social, economic, environmental, and democratic wellbeing outcomes to be seen as equally important and given equal weight. We will be advocates for public policy approaches that embrace and reflect this balance.

Whatever we are working on, our values of being motivated by change; collaborative; challenging, and kind will shape our approach. These are new values for the organisation and reflect what are recognised as our existing strengths, as well as our aspirations for the future.   

As Carnegie UK embarks on this new strategy we do so very much in the spirit of partnership. 

The social change eco-system is extensive and complex. Different players bring different approaches, perspectives, and skills. It is important to us to understand our place in this system and to make a distinctive and useful contribution, complementing that of others and being a good collaborator and partner. 

We are also committed to keeping learning. The field of wellbeing has developed a great deal over the past decade, but there is much more to discover, and we are keen to add to the collective evidence base.

We also want to know more about how change comes about, and how to use the resources at our disposal to make an effective and persuasive case for the actions and practice which will lead to improvements in wellbeing.

I am hugely grateful to all of those who have supported us in the development of our new strategy. This includes the whole Carnegie UK team, our Board of Trustees and the many partners and stakeholders who have engaged with us at different stages of the journey and generously shared their views and experience.  

I hope that you enjoy reading about our new strategic direction. Please do visit our website where you can find more information about our approach and our initial programmes of work.

Sarah Davidson

Chief Executive, Carnegie UK

Twitter: @CarnegieUKTrust

www.carnegieuk.org

Innovative tech keeps care residents’ families in the loop

CARE HOME residents have been able to instantly share important information about their health and wellbeing with loved ones throughout the pandemic, thanks to a bespoke digital care system.

When Cramond Residence closed its doors to visitors back in March 2020, its tailored technology-enabled care system showed its true value by providing real-time updates on residents’ health and wellbeing with family, through an app called Access Care planning.

The care plans are developed with the residents and their family, as well as key workers and named nursing staff. Plans are individually adapted for each resident on their arrival to ensure it reflects their healthcare history and care needs.

It covers everything from the food they eat and exercise or physiotherapy they take, through to any prescribed medication and palliative care they may require.

The technology has been in use since the care home opened in 2018, but became indispensable during the pandemic. Throughout lockdown, families were able to log on and view their loved one’s information at the click of a button, giving them peace of mind and reassurance wherever they are in the world.

Ross Bijak, Clinical Care Manager, said: “Our online healthcare system has received a lot of positive feedback from resident’s families in recent months – it means they have access to real-time information around the clock.

“Lockdown was extremely tough for families who weren’t able to visit, and for our residents themselves. I think one saving grace has been this technology which is able to provide some comfort and reassurance to families.

“We’ve had families calling us just to chat about something they’ve read on the app, or to share their delight in seeing a specific item like physiotherapy or certain exercise in the plan.

“Although the plans are created when residents first enter the home, they are regularly updated and reassessed as people’s health and care needs change.

“For example, we have built specific care plans focused around visiting requirements and Covid-19.”

The digital care plans take into account a whole range of factors, including a resident’s skills, strengths and experiences to create the best, bespoke care plan for them which puts their needs first.

Cramond Residence provides a combination of luxury accommodation and the highest quality of care. Set in a leafy location, it offers small group-living in nine houses, with all residents enjoying a wide range of amenities and activities, delicious food and bespoke care.

To find out more, call 0131 341 4037 or visit https://cramondresidence.co.uk/

Trinity Community Council: latest newsletter

Trinity CC’s Bill Rodger writes:

Here’s your May(-ish) update from TCC.

GENERAL DATA PROTECTION REGULATIONS

We now have a clearer understanding of the detail on GDPR.  We are basing our approach on the fact that as a reader of TCC eNews who has already subscribed, you have a legitimate interest in what we are reporting.

This means we do not require you to re-subscribe. And we have also update our Privacy Policy.

You can find this here

https://trinitycommunitycouncil.wordpress.com/privacy-notice/

You can unsubscribe at any time simply by replying to this email address.

Best wishes,

Bill Rodger

News from Trinity Community Council

FEBRUARY NEWSLETTER FROM TRINITY CC

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waterfront hotel

This month, as well as discussing how we communicate with residents, we again include news of some developments to east and west of us – in particular the hotel proposed to be built next to Ocean Terminal (above).  Continue reading News from Trinity Community Council