Family Experiences of Vegetative and Minimally Conscious States

Rehabilitation centres and care homes

Most patients in a prolonged vegetative or minimally conscious state will eventually be transferred from hospital to a rehabilitation or long-term care setting.  A few families also try home care (see ‘Caring at home’). National guidelines outline the appropriate early pro-active management of these patients (e.g. including several months in a specialist assessment centre) and there are clear guidelines about standards for specialist nursing homes (see ‘Resources’).

It is distressing and poor practice, if, attempts are made to discharge patients to inappropriate settings. One mother, for example, was horrified at the suggestion that her teenage son should go to ‘an old people’s home’. Families also often identified huge gaps in provision or said they wished that specialist rehabilitation services were provided for longer periods (or earlier).
However, the move out of hospital and into a rehabilitation setting or care home was often a time when families felt the care for their relative improved.
‘Good care’ was appreciated by those we spoke to.  Families valued the skill and dedication of a wide range of staff, good team work and communication, the provision of therapies and treating the brain injured individual with dignity, respect and ‘as a person’. 
They also valued staff listening to their concerns and taking on board their knowledge of the person.  ‘Bad care’ delivered none of these things.

Here a range of people give their views about what they valued in ‘good’ care and what concerns they had.
Reports from families about the quality of care varied – and many still felt in a ‘battle for care’.
 There are national guidelines (see ‘Resources’) giving clear guidance of standards of care required for severely brain-injured patients. Inspection reports for are available online - from regulatory bodies, such as, in England, the Care Quality Commission.

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