"I DIDN'T go out of the house for two years. I wouldn't go to the shops. I don't like crowds and I don't like to be around children I don't know - because they can be nasty."

Those are the words of Cononley's Hetty Colman, who suffers from dystonia, a debilitating neurological condition dominated by involuntary muscle spasms which can be extremely painful.

Hetty's form of the condition - spasmodic torticollis - causes the neck muscles to spasm twisting her neck to one side, which also affects the spine.

It is a disorder she has had to live with for 20 years - with no hope of cure or treatment. The symptoms can be alleviated to some degree by regular injections of botox - the chemical paralyses the muscle relieving the pain of the spasms.

"It is a pretty painful injection," she said. "It is pretty painful afterwards for a few days but the results are worth it. I used to curse every time I had to go to these injections, but now I realise what they were doing."

The difference such injections made to Hetty's life became increasingly apparent this year when problems in Airedale Hospital's neurology department led to her appointments being cancelled.

From having injections every two months, she has only been given botox once so far this year - back in May. "Having not had one for quite a while, I have realised that I really do need it," she said.

Describing dystonia as a "cruel disease", Hetty told the Herald how she had lost co-ordination between her two hands making her love of cooking impossible, and even eating difficult - her husband Denis has to cut up her food.

She has problems concentrating and feels conspicuous in public.

"I was once sitting in the coffee bar in Leeds station waiting for my husband and a woman reading a paper kept lowering it to look at me. All I could think was 'get me out of here'," she said.

She had to give up her teaching career and endured years of travelling to various specialists to diagnose the condition, which came out of the blue.

"I woke up with a stiff neck and my head was pulling to the left," she said. "I put up with it for a little while, but at the time I was driving and it was becoming more and more difficult. I went to the GP and he didn't know what it was."

She was finally diagnosed in London but was told there was no treatment and no cure for the illness about which little was known at the time.

Hetty underwent two bouts of surgery, but this did little to alleviate the condition and she was then put onto the course of botox.

"Every two months for 14 years I have been going to Airedale Hospital's neurology department and have been absolutely delighted with it. But since Dr Jim Howe went on sabbatical the treatment has been sporadic. It's rather upsetting," she said.

Denis added: "People who are ill and suffering pain and discomfort can well do without the uncertainty of when they are going to receive the next treatment."

Although Hetty received her next appointment this week, she said it was the lack of communication from the hospital which upset her the most.

Melvyn Birks, divisional manager for acute services at the hospital, told the Herald that administering botox was a specialised skill, which most district general hospitals could not provide.

"Dr Howe worked very closely with Leeds and developed those skills so that we could offer them locally at Airedale Hospital. When he went on secondment to Australia, we couldn't recruit a consultant who was able to administer botox on a locum basis."

He said that a replacement for Dr Howe had now been found and the service would resume as normal from September 1.

Dystonia is the second most common neurological disorder after Parkinson's Disease. Denis and Hetty are keen to promote awareness of the disorder, which recent research shows affects one in 500 people in some form or another.

Denis is a trustee of the National Dystonia Society and chairman of the West Yorkshire Branch. His wife is a branch member. More information can be found on the society's website at www.dystonia.org.uk or by calling 020 7490 5671.