Robbed of power to communicate

"Reading was lost to me and that was so frustrating."

Ms Richardson, 54, suffers from a condition called aphasia, a disorder caused by damage to the areas of the brain which control vocabulary.

It seems to obscure the relationship between words and meaning. Overnight, patients' ability to communicate and comprehend are destroyed.

Ms Richardson's stroke occurred three years ago on the operating table following an epileptic seizure. Later, on the ward, hospital staff explained to her what had happened. She understood then why one side of her body was frozen, but had no idea she could no longer express her thoughts.

"Everything was normal up here," she says, tapping her head. "I would ask the nurses for a drink and it would come out blur-nya-nya'. No-one could understand what I was saying, but I could not understand why they did not. There was something wired up wrong."

A speech and language therapist came to her bed and tried to explain, but she remained estranged from the routine demands of daily life. Before she left hospital, she remembers looking at clothes laid out on a bed and the therapist drawing a person to show her what to do with them.

Slowly, with the help of the speech and language unit at Stirling Royal Infirmary, Ms Richardson has regained much lost ground.

Although she sometimes pauses as she speaks, impatient with herself as she searches for the word she needs, no-one would realise the effort she is really injecting into her spirited conversation.

At first, she says, she was ashamed to turn to strangers at bus stops and ask them to read the number on buses. However, she has found the general public are usually very helpful. It is the medical profession, ironically, who have at times been inconsiderate.

Ms Richardson describes a recent visit to see a specialist about her epilepsy. "He had all my notes in front of him," she says, clearly piqued. "I was trying to express how I was feeling and he was getting agitated. I said, You do realise I have got aphasia after my stroke?' and he said, Oh, right, so you are not just being deliberately slow'.

"I wanted to get angry with him but the words I wanted wouldn't come. It was probably just as well, but I started crying because of the frustration."

Her story is familiar to other aphasic patients, who are gathered at the Stirling speech and language therapy unit to discuss their experiences.

A study about the condition, published today by internal watchdog NHS Quality Improvement Scotland (QIS), reports "considerable gaps" in the knowledge that health and social workers have of the problem.

Alex Frederick, 63, describes the lack of help he received when he suddenly found he could not speak or write the night he returned from holiday.

At first his wife thought he was drunk - he had enjoyed a "few sherbets" on the plane - but when she gave him a piece of paper the only thing he could print was "w".

He remembers going to see his GP the following morning: "He said, It's nothing to worry about. It's aphasia'. That's what went on my form my sicknote."

Mr Frederick, a senior shop steward at the time, tells how he returned to work with no additional support and trying to conceal the problem. "I knew I couldn't read," he says. "I threw the papers on my desk and said to colleague Colin, What do you make of that?'. Colin read the report and said, We cannot do that, Alex'. I had no idea what it was."

In the end, it was a friend of his wife who advised him to seek speech and language therapy and his employer who organised the scans which showed he had suffered a stroke.

But even then, he says, no-one really explained aphasia to him.

He had to travel to Carlisle to meet other sufferers brought together through a charity called Speakability. It gave him the impression the NHS did not know about aphasia in Scotland because it was an English disease. He laughs: "I found out since that it is anything but."

Awareness of the condition needs to be raised among the general public, as well as the medical profession, according to the sufferers and the NHS QIS report.

Like Ms Richardson, Dave Wright, a retired mechanical engineer, says it was when he came home from hospital in May after his stroke that the problems really began.

He says: "I went to buy a new computer. I went by myself. I was looking around and inevitably a salesman comes up and he gave me the usual patter. He said, Can I help you?'.

"I said, I am thinking about buying a computer and I have got a communication problem, I have got a stroke'.

"This guy said, you just enjoy yourself' and" Mr Wright projects his finger through the air to symbolise the salesman running off.

Helen Gowland, a former physiotherapist, is infuriated by the patronising sympathy which her battle to use language can sometimes evoke. "What a shame, she's had a stroke," she mimics in a sing-song voice.

Then she places her hand on Mrs Richardson's arm, and leans her head to one side: "Take your time," she says in a sickly-sweet tone.

She explains: "People assume because you have difficulty with language that your brain is wrong. But I know what I'm saying, it's just you can't get it."

Ms Gowland also misses escaping in the pages of a good novel. She talks of inhaling the scent of the books in Waterstone's. "If I look at a book, I smell it," she says.

Mr Frederick, too, is haunted by the days when he ripped through a Dick Francis mystery in two nights. After his stroke it took him six months to reach the end of the book he had started and he still does not know if he followed the plot.

He says: "It is hard to get it through to people just how frustrating it is."

Cause and effects

• Aphasia is a disorder which is caused by damage to the areas of the brain that control language.
• It is most often the result of a stroke, when the blood supply to brain cells has been cut off, but head injuries and conditions such as meningitis and multiple sclerosis can also cause the condition.
• Aphasia leads to a range of communication problems, among them difficulties talking, understanding others, writing, reading and using numbers. Routine tasks such as making telephone calls can become impossible.
• There are around 250,000 people in the UK with aphasia, with an estimated 30,000 sufferers in Scotland. Many are under the age of 65.
• Treatment is given by speech and language therapists and can involve one-to-one work, group therapy and exercises to undertake at home.
• Advice for talking to someone who has aphasia includes saying their name before speaking, looking into their eyes while talking, talking more slowly and not interrupting.
• To help prevent a stroke it is recommended that people eat fruit and vegetables, take regular exercise, avoid smoking and heavy drinking.