Living with aphasia- the hidden disability that frustrates and isolates

ITV reporter Rachel Hepworth went to meet members of the Dorset and Hampshire support group 'Say Aphasia' to learn about the language disorder. Local shanty band The Salty Seadogs joined them to help the members express themselves through music.

Lucy Fletcher is unable to tell me her name, or where she's from.

They seemed simple enough questions when she agreed to speak to me about her aphasia, but it is soon clear that despite her obvious intelligence and desire to talk, the words just won't come.

After a minute or two trying to recall and communicate, she gives up. I spot some name badges on a nearby table and ask if she recognizes her own. Her eyes light up. 'Yes,' she says, 'That one.'

LUCY FLETCHER in her own words, on the frustrations of aphasia and her determination not to be excluded.

She points to 'Lucy,' but she's still unable to say the word. She rolls her eyes in frustration, but then smiles, in resignation. It's clear this is something she has had to get used to.

We try again with where she's from. 'Chichester,' she says, confidently, but then furrows her brow. 'No, not that. Winchester?' she says, unsure.

I'm not sure whether to make other suggestions or let it come to her. 'In Hampshire?' I ask. She's not sure. Then, suddenly, as if a light's been switched on, she says 'Petersfield- yes, Petersfield.'

In many ways, Lucy is eloquent. Some sentences flow naturally, in patterns. She's expert in using facial expression and mime to emphasise meaning and emotion.

But at other times the language jumps- words are missed, and she skirts around specific words, trying to find alternatives.

She refers to her husband Andrew as 'the other one' because she can't remember his name, and her children as 'the other ones, but small.'

But she clearly adores them and is able to tell me how proud she is of them, and how she's happiest with just 'the other one', not forced to speak in large groups or have to explain herself to strangers.

It transpires that Lucy was, among many things, an actor, dependent on language, before a disastrous knee operation three years ago, when she was left in a coma for several days.

A series of seizures then left her with aphasia, a condition that affects almost half a million people in the UK.

It is usually sudden, caused by damage to the left side of the brain, leading to problems with language and communication - it could be speaking, listening, reading or writing.

It's often brought on by a stroke, as is the case with Amelia Clark, star of Game of Thrones.

The actor Bruce Willis also has the condition due to a form of dementia, but other causes could be a brain haemorrhage, tumour or injury.

'It's like going on holiday abroad and you can't, for example, speak French but everybody's talking in French,' says fellow sufferer Jez Hodgkinson.

'Frustration is just a start of it. And yeah, it, it's very difficult for people to understand what it is.'

Jez is a peer leader at the Southampton and Winchester branch of the Say Aphasia support group.

Like other regional groups, they meet regularly to socialise, support each other, and allow time and space to communicate without pressure.

Today, to mark the third anniversary of the group, they're being visited by The Southampton Salty Sea Dogs, a shanty group which encourages participation.

Interestingly, music uses a different part of the brain, so singing gives sufferers another way to express themselves- it can be the same with stuttering - think Gareth Gates, and his ability to sail through musical phrases.

'It's great,' says Salty Sea Dog Graham Belton. 'I can see the enjoyment in the people's faces when they sit there listening and joining in.

'Some of them who really struggle to speak, I can see them mouthing the words.

'I think that's incredible. It gives a lovely, warm feeling to us to be to be able to do that.'

The group is currently looking for more volunteers, and wants to encourage more aphasia sufferers to join them.

'It's a lifeline for me,' says Lucy.

'Really difficult, it would be easier not to come. But I know I have to make myself.' Then she stalls.

'Because it would be easier to hide away?' I suggest, 'and become isolated?'

'Yes,' she says sadly.

She's clearly a woman with a lust for life and a woman with a voice. She just has to work painfully hard to use it.