Carers Trust

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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Get involved – or you’ll get left behind

16 and 17 year olds will vote for the first time in a UK election in 2016

16 and 17 year olds will vote for the first time in a UK election in 2016

Remember all the talk back in September about how politics in Scotland had changed forever?

Less than five months on and with fewer than 100 days to the next Westminster election, how’s it really looking?

One one side, widespread public scepticism and a wave of community protest have played a large part in the Scottish government’s decision this week to call a moratorium on fracking.

On the other, the swings and roundabouts of the Smith Commission mean that young Scots will become the first under-18s to vote in the Holyrood general election next year, but still won’t get near a ballot box in May 2015.

However, there’s palpable impatience to have a say among 16 and 17 year olds who are just as informed, inquisitive and engaged as their parents or elder brothers and sisters about the future of Scotland as a whole as well as their own communities.

Jack Baker – a student at Woodmill High School in Dunfermline – said: “The world is changing.

“So everyone – no matter how young you are, no matter how old you are – you have to be involved with the change, or I think you’ll get left behind.”

For the latest edition of Brilliant Scotland – to be broadcast from this Sunday (1 February) on the Community Channel – we went to meet students at Woodmill High because one of them, Erin Rooney had made a film last year encouraging young people to register to vote – and to examine the issues carefully in the run-up to the September #IndyRef.

“People need to get informed,” she says now, looking ahead to that historic Holyrood election in 2016, which will see 16 and 17 year olds cast a vote for the first time ever in a general election anywhere in the UK.

“They definitely need to look and see what they want, and not just go for it when it comes to voting.”

Says fellow Woodmill student Beth O’Reilly: “I think [politicians] could sway my vote if they were more engaged in social media.”

Another, Kenneth Peffis, believes it is a mistake for politicians to take young voters for granted: “You didn’t see the politicians walking around schools [during the referendum campaign] seeing what young people are thinking or asking 16 or 17 year-olds about how they’ll vote.”

As part of the programme, I’ve been working with student and journalist Ted Simpson, from Edinburgh University. He is editor of Nomad magazine and has been my political correspondent for this and a pre-#IndyRef report on young people and politics in Scotland.

Ted says: “Politicians need to play their part in reaching out to young voters, be it through social media, regional student forums or visiting schools to talk to students about the issues that really matter to them.

“This way, young people can continue to be engaged in politics.

“And they’ll know that their vote – just like in the referendum – really can make a difference.”

Part of the Brilliant Scotland programme features drop-in Gaelic classes at the Coffee and Craic café in Glasgow

Part of the Brilliant Scotland programme features drop-in Gaelic classes at the Coffee and Craic

Engagement in social media is a thread running through much of this fourth edition of the Brilliant Scotland series, from the Facebook postings by Scottie dog shop mascot Gillebrìde at the Coffee and Craic social enterprise café in Glasgow, to the tireless blogger and dementia care campaigner, Tommy Whitelaw.

As the Director of Public Prosecutions Alison Saunders issues new guidelines for police in England over how they investigate issues of consent in rape cases, we join a workshop on consent and prevention of sexual violence by student ambassadors for the Rape Abuse Support campaign in Aberdeen.

I’ll write a bit more about this early next week.

Elsewhere in the programme, we also spend time playing “frogs and sharks” with a daring and enthusiastic group of nursery school children learning to ride a bike as part of CTC Scotland’s fast-moving Play on Pedals project.

Brilliant Scotland will be broadcast at 9.00pm on Sunday 01 February and repeated at 07.00am on Monday 02 February and again on Saturday 07 February at 06.00am.

The programme will also be available on-demand on YouTube:

http://www.youtube.com/user/CommunityChannelTV