Do #SomethingBrilliant

My name is…

Tommy Whitelaw lobbies MSPs during a recent event at the Scottish Parliament

Tommy Whitelaw lobbies MSPs during a recent event at the Scottish Parliament

Joan Whitelaw was diagnosed with vascular dementia in 2007.

When that happened, her son Tommy parked his previous life to care for her until she died in 2012.

Those five years have informed his new life.

Tommy Whitelaw is now almost constantly on the road talking to health care professionals, medical students and hundreds of others across the NHS in Scotland and England, telling the story of how one small gesture by a nurse visitor to his mother’s home – when both she and Tommy felt at their most isolated and near to despair – made a colossal difference to how he was able to cope with her declining health and mounting care needs.

Amidst the sometimes harrowing details of how Joan Whitelaw’s physical world changed forever as dementia took its toll, Tommy says the greatest tragedy is how the illness erased a great love story from her memory: how she met and married Tommy’s father and their lives together.

It is an experience of loneliness, of a patient’s world shrinking – sometimes to anonymity – which has also informed a new campaign to try to help restore dignity and self-esteem to hospital patients.

Kate Grainger is a consultant doctor who is also terminally ill with cancer.

Her campaign hopes to encourage NHS staff to introduce themselves by name to help build a relationship with their patients.

She says: “I firmly believe it is not just about knowing someone’s name, but it runs much deeper.

“It is about making a human connection, beginning a therapeutic relationship and building trust.

“In my mind it is the first rung on the ladder to providing compassionate care.”

That connection is something which healthcare professionals in Scotland say they have already begun to make across dementia care.

Ruth Mantle, consultant nurse with Alzheimer Scotland, said: “[It’s about] taking the time to find out what really matters to that person, who matters to that person, who’s the best person to speak to, to get that information.

“We use tools such as the ‘getting to know me’ tool up here in Scotland.

“So, absolutely we can all make those small, little differences to include someone’s experience.”

Pledges to ‘make a difference’ are at the centre of Tommy Whitelaw’s Dementia Carer Voices campaign, which features in the latest edition of Brilliant Scotland series on the Community Channel.

When we filmed a lobby of MSPs at the Scottish Parliament organised by Tommy Whitelaw’s campaign and Alliance Scotland, the new First Minister of Scotland Nicola Sturgeon told us: “Every single, individual pledge that’s made adds up to a transformation in how we care for people with dementia and people who care for them.

“And as long as I’m in politics and as long as I have got any influence in government my pledge is to help and support people who are working so hard to make life better for people with dementia.”

According to official estimates, there are more than 650,000 unpaid carers in Scotland.

Campaigners believe there are in fact tens of thousands more – many of them may not even realise they are a carer.

They hope new legislation – due in the Spring – will help improve conditions for carers across Scotland, through providing individual Support Plans, non-judgemental care assessments and greater responsibilities on local authorities to provide cover to allow carers to take short breaks.

Many also believe one single change could everything for carers: a living wage.

Taken together, they say, both elements would allow carers to manage their role and have a life outside caring.

Said Tommy Whitelaw: “Over and above any policy or strategy, it’s people who change lives.

“And I think the highlight so far on the tour is just meeting those incredible people who are passionate – and compassionate – and want to really do their best to care for people.

“And we’re trying to help them with that story, but also to find out the little things that get in the way of allowing them to do that.

“So along with the pledges we’re asking people: is there anything that would stop you fulfilling this pledge?

“And if there’s a way we can support them, to allow them to fulfil it, we’ll do that.”

Brilliant Scotland will be repeated on Saturday 7 February at 06.00am.

The programme is available on-demand on YouTube: http://www.youtube.com/user/CommunityChannelTV

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On the road and on the wire

Training in Dornoch last month with the Digital Commonwealth project

Training in Dornoch with the Digital Commonwealth project, May 2014

“Digital inclusion” is a big buzz word at the moment,” Marilyn Slavin, director of the CK UK website tells me.

She is filming an interview for the My Brilliant Moment series on Media Trust’s Community Channel and she is concerned that many of those involved in trying to make the internet and all its devices more accessible are not looking carefully enough at what’s on their websites and how it’s written.

“We’ve been doing digital inclusion since 2004 and it should be further on.

“One of the reasons that I’m doing this film, talking to this camera, is to encourage more people to get involved and make their websites accessible, because if you make it accessible for people with learning difficulties then it covers a lot of other people: people whose first language isn’t English, people who have got literacy issues.

“If you get it right for people with learning difficulties all of those other folk will be engaged with what you are trying to say and your message.”

Marlilyn Slavin (r) with Maureen McGinn, chair of Big Lottery Fund Scotland at launch of Do #Something Brilliant Scotland project. April 2014. (pic: Simon Dalziel)

Marlilyn Slavin (r) with Maureen McGinn, chair of Big Lottery Fund Scotland at launch of Do #SomethingBrilliant Scotland project. April 2014. (pic: Simon Dalziel)

Marilyn’s comments were a wake-up for me.

I had just returned to a near-normal schedule of work after a knackering, but massively rewarding, trip to Orkney and the far north of the Scottish mainland in a final round of training workshops with the Digital Commonwealth project.

Watch this space for an extended report on the road trip and the wider project in a forthcoming edition of Media Trust’s #Brilliant Scotland programme.

In the meantime, there’s a flavour of the kind of work I was doing in this mini video, filmed with Jennifer Jones in Dornoch:

 

The focus of much of this training work is on how to get the best pictures and sound using low budget equipment. In the case of these Digital Commonwealth workshops, that usually means smartphones and tablets – sometimes with the help of catering-size coffee tins, as we found during one training session hosted at the Orkney Library in Kirkwall (below).

Filming with digital inclusion activists at the near-legendary Kirkwall Library (Orkney, May 2014)

Filming with digital inclusion activists at the Orkney Library in Kirkwall (May 2014)

The library has near-legendary status among book people for the breadth of its social media following and especially its presence on Twitter, so it was great to get a chance to visit the place and to meet such enthusiastic and committed people.

But Marilyn’s comments highlighted to me that training is only one part of opening digital access to wider groups across Scotland.

Speaking at this month’s DigiScotFest2014 event in Edinburgh, Michael Fourman, chair of the Royal Society of Edinburgh’s landmark inquiry on digital participation, said “we have to start with the hardest places,” when it comes to digital inclusion.

One strong message from what I heard at the DigiScotFest was that this has to include those with all kinds of special educational needs as well as remote rural areas and Scotland’s austerity-hammered housing schemes.

For Marilyn Slavan, there has been poor progress so far on digital inclusion.

“It’s not fair.

“People with learning difficulties are customers, clients, they’re people that could attract organisations and they have got spending power, too.

“So a lot of organisations are missing out.

“People need to open their eyes and make it better, make it fairer, because at the moment it’s still not fair for people with learning difficulties.”

Media Trust’s My Brilliant Moment series is an outlet for groups or projects to speak directly to the audience about what they do, what motivates them and how they hope to make a difference to those around them.

The series is one feature of our Big Lottery Funded project Do #SomethingBrilliant, which gives charities and community groups a way of amplifying their message through programmes on the Community Channel (which has recently had more than 2m viewers a month), but also via the website, fortnightly newsletter and the Community Newswire, run by MT and the Press Association.

Groups can also send their calls to action to the Little Brilliant Things pages, which are an opportunity to encourage people to get involved in campaigning for change.