‘Life’s too difficult’ – MS woman
Cannabis campaigner considers final protest
(Story dated: October 17, 2002)

Suicide could be the final protest of Orkney MS sufferer Biz Ivol, who says her disease has become almost unbearable to live with.

Spending up to 18 hours a day in bed because, she claims, of a lack of care, has led her to consider taking her own life.

“That has been the plan from the start of this disease. I have always thought when the disease became too bad, I would not want to live with it any more,” she said this week.

After receiving a telephone call from The Orcadian, the Orkney Islands Council community social services department agreed to investigate Mrs Ivol’s current care package.

Head of strategic services at the social work department, Ms Gillian Morrison, said: “We were concerned that Mrs Ivol is unhappy with her current care services. As with anybody, who would like a review of their care services, we have advised Mrs Ivol in order to help her with this.

“We are working with Mrs Ivol to find ways of supporting her, to better meet her needs.”

The 56-year-old, is due to stand trial at Kirkwall Sheriff Court in November on charges of supplying, possessing and growing cannabis – a drug she says helps alleviate the painful symptoms of the disease.

Mrs Ivol has campaigned vigorously for the legalisation of the medicinal use of cannabis, but she says the stress involved is slowly killing her.

“I am turning completely spastic. Life has got too difficult now. I am in a hell of a state now and turning into a skeleton. My home help has been cut back. At the moment I get one hour in the morning and half-an-hour in the afternoon.”

According to Mrs Ivol, a carer comes to her home at Craigflower Cott, Herston, South Ronaldsay, at 9am, for an hour, and another returns at 3pm for half-an-hour.

“I spend 17 hours in bed just watching TV. I’m not fit to get myself in or out of bed. I’m fed up asking for more help.”

She also claimed that her current home helps, through no fault of their own, were not trained in lifting and handling properly.

“Once I asked for help a couple of weeks ago when on the toilet. My legs were not very strong and she (the carer) tried to help, but I fell on the floor. They are not trained for things like that. It is not the home help’s fault, it is the home help department.”

Around two years ago, Mrs Ivol said she volunteered to go into care, but claimed she was told that nowhere was available.

“They (the Orkney Islands Council social work department) had workmen come down to adapt the house for a wheelchair. I was quite prepared to go then, but now they have spent all this money adapting the house, I don’t want to go now.”

When Mrs Ivol was first diagnosed with MS, she likened the symptoms to having numb patches over her body. Now, she says, it feels like all the muscles in her legs have been torn, twisting in knots.

“I have a pain up and down my spine all the time. Because I am so used to pain, it is an everyday part of life.”

Recent physiotherapy has helped, Mrs Ivol admitted, although it has come “too little, too late”, she said.

“For a long time I did not get any physiotherapy, or exercise or anything. That has made things a lot worse. But I have been getting physiotherapy (once a week for 20 minutes) for three or four weeks from the Balfour Hospital. The physiotherapist can feel a difference in my legs. I have been told my muscles are still there but I need more physiotherapy and more help around the house.

“The doctor has been nagging me about eating properly, but I have had to stop cooking, as I kept burning myself and having accidents. For a while I lived on two packets of crisps and a bar of chocolate every day. I get fed once a day at 3pm when the carer gives me something to eat.”

In the beginning, although Mrs Ivol said suicide was an option, she believed that she could live with the disease.

“I have always thought I am going to get better – right up until last year, I thought I was going to get better. But the symptoms have piled on so fast – that is all down to the stress. Suicide would be a final protest.”

The director of the OIC social services department, Mr Harry Garland, who is on holiday this week, was alerted to the alleged problems last week.

At the time he said a member of staff would be sent to see Mrs Ivol, to review her case.

“If someone flags up unhappiness with the package we would review that, to see if it met her needs. You have referred it to us. I will get someone to go and see her.”

Mr Garland maintained that Orkney was one of the best providers of care in Scotland.

Regarding Mrs Ivol’s claims that she spends 17 hours in bed every day, he said: “Spending that length of time in bed would be very far from normal. None of our staff would assess it appropriate to spend that amount of time in bed.”

Mrs Ivol said this week she had been visited by several care staff and a psychiatric nurse.

“All I want is to be kept warm and fed and to be kept clean.”

lorraine.shearer@orcadian.co.uk