The Courier & Advertiser (Fife Edition)
MS sufferer ‘stranded’ for several hours a day
A WOMAN paralysed from the neck down has accused NHS Fife of eroding her independence by leaving her without access to a phone line for several hours each day.
Eleanor Baillie (54), who suffers from multiple sclerosis, is alone in her Guardbridge home for six hours each day.
She relies on a vital computerised device, called an environmental control system, which she operates with a neck brace, to use the phone, control her television and lights and open her front door.
One of two control boxes she has in her living room and bedroom, which are linked to the system, has broken down, so she is only able to use the phone when a carer holds the handset to her ear.
That means that for the six hours she has no carers she cannot make or receive a phone call.
Now NHS Fife has told her she is ineligible for the system upgrade she desperately wants as she is not alone for long enough each day.
Instead, it intends to issue her with a community alarm so she can get help in an emergency.
Eleanor, of Kinnear Court, said the situation was a health and safety risk and left her a “sitting duck”. But she is far more distressed at the impact on her independence.
She said: “My main concern is my independence.
“This is taking away my independence and I want to make the most of what I have.
“The engineer came out but it is quite an antiquated system I have and he couldn’t get it going, so he brought the bedroom box through to the living room.
“There is an updated system, which is what I am fighting for, but the health board has told me I don’t qualify.
“I’m on my own six hours a day and I have to be able to answer the phone and make phone calls. “It is a big worry”. She also said she was aware of another person who has the updated system she wants who she believes is less in need of it.
Eleanor was diagnosed with MS, a neurological disorder which affects around 100,000 people in the UK, 20 years ago.
She has already had to fight to maintain her independence and dignity as her condition has deteriorated.
Six years ago Fife Council threatened to take away one of her carers and Eleanor feared that would result in her ending up in a home, far from her family.
Health and safety legislation, she explained, requires two people for lifting and moving, so she would have been left stranded in the same chair for hours everyday and forced to sleep in the same position all night as there would be no one to turn her.
However, Eleanor contacted The Courier at the time and persuaded the local authority to change its mind.
NHS Fife confirmed it has no intention to replace or upgrade Eleanor’s system.
Medical director Dr Brian Montgomery said: “Unfortunately in this instance it is simply not possible to repair the computer system due to the age and unreliability of the system.
“Careful consideration is given to replacing complete systems, with full account taken of a number of factors including the level and frequency of care support, the likelihood of use and where needs cannot be met by other means, for example, through carers.
“Patient safety and security is essential and we recommend to patients where we believe this can be further enhanced with other equipment.”