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Family's fears at nursing changes Family's fears at nursing changes
(about 4 hours later)
A paralysed women and her family say proposals to change her £600,000-a-year nursing care package are not safe.A paralysed women and her family say proposals to change her £600,000-a-year nursing care package are not safe.
Alicia Leston-Rama, 23, of Cardiff, breathes through a life support machine and has had 24-hour care since she was injured in a car accident aged two.Alicia Leston-Rama, 23, of Cardiff, breathes through a life support machine and has had 24-hour care since she was injured in a car accident aged two.
Her family are "devastated" less-qualified nurses will now care for her.Her family are "devastated" less-qualified nurses will now care for her.
But Cardiff Local Health Board (LHB) said the current package did not meet her needs and it believed the changes were in her best interest.But Cardiff Local Health Board (LHB) said the current package did not meet her needs and it believed the changes were in her best interest.
Ms Leston-Rama is paralysed from the neck down and said the new nursing team would not be able to change equipment in an emergency.Ms Leston-Rama is paralysed from the neck down and said the new nursing team would not be able to change equipment in an emergency.
With the staff I've got now, I feel safe - with the other care package I won't feel safe Alicia Leston-RamaWith the staff I've got now, I feel safe - with the other care package I won't feel safe Alicia Leston-Rama
"If it does block, they've got to pick up the phone and dial 999 - by the time they put the phone down I'll be dead.""If it does block, they've got to pick up the phone and dial 999 - by the time they put the phone down I'll be dead."
"I'm living life well at the moment but they can't see that.""I'm living life well at the moment but they can't see that."
"My lifestyle at the moment - I go out clubbing, I come back any time I like."My lifestyle at the moment - I go out clubbing, I come back any time I like.
"With the staff I've got now, I feel safe - with the other care package I won't feel safe," she said."With the staff I've got now, I feel safe - with the other care package I won't feel safe," she said.
Her mother, Sandra Jones said her daughter was only expected to live five years after leaving hospital, but had now lived for 19 because of the quality of her nursing care.Her mother, Sandra Jones said her daughter was only expected to live five years after leaving hospital, but had now lived for 19 because of the quality of her nursing care.
"We've coped with emergencies with her and they're just so quick."We've coped with emergencies with her and they're just so quick.
Alicia's mother Sandra taking part in a protest
"They can get her back, they can do everything - they're just marvellous.""They can get her back, they can do everything - they're just marvellous."
She said they would fight the decision "all the way" and would refuse the replacement care.She said they would fight the decision "all the way" and would refuse the replacement care.
'Best interest''Best interest'
In a statement, Cardiff LHB said it had been in detailed discussions with the family over the last three years about the need to provide her with "a medically appropriate and safe package of care within her home environment".In a statement, Cardiff LHB said it had been in detailed discussions with the family over the last three years about the need to provide her with "a medically appropriate and safe package of care within her home environment".
"This is due to a significant number of concerns regarding her existing healthcare arrangements which from a medical perspective are not able to meet her healthcare needs."This is due to a significant number of concerns regarding her existing healthcare arrangements which from a medical perspective are not able to meet her healthcare needs.
"The LHB and Alicia's clinical staff have spent a considerable amount of time and effort to secure a new team from one of the leading national providers of care to patients with her type of healthcare needs."The LHB and Alicia's clinical staff have spent a considerable amount of time and effort to secure a new team from one of the leading national providers of care to patients with her type of healthcare needs.
"The new team will be dedicated to providing her care at home and the LHB and her clinicians believe these changes are in Alicia's best interest.""The new team will be dedicated to providing her care at home and the LHB and her clinicians believe these changes are in Alicia's best interest."
The statement said the LHB could not commission care without safeguards that it was medically appropriate, safe and could meet both her current and evolving health needs.The statement said the LHB could not commission care without safeguards that it was medically appropriate, safe and could meet both her current and evolving health needs.