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Services and Medical follow-up for people with CHS


Is there help and support available for caring for people with CHS at home?
Most people with CHS are cared for at home, by their families and/or, where possible, professional carers and community nurses, who may stay overnight.


What equipment is needed to care for someone with CHS at home?
A specialist healthcare professional will be able to advise on, and coordinate the services and equipment required to provide care for people with CHS in their own homes.
This will include;

  • Installation of an oxygen supply
    Appointment of additional carers
    Training for patients, parents and their carers in using  ventilators, monitoring equipment, tracheostomy tubes and resuscitation techniques
    Housing modifications, if needed
    Applications for financial support
    Agreed plans for emergencies
    Agreed plans for community and hospital follow-up

The arrangements will be reviewed regularly, and changed if/where necessary.


What regular medical follow-up do people with CHS need?
A doctor will discuss with you about how regularly they would like to review;
the method of ventilation used
whether the patient is affected by lung problems, or other associated health problems, growth and learning care needs, and whether these are being met


Who is involved in the care of people with CHS?
A CHS specialist, and/or a respiratory, anaesthetic or intensive care consultant
A paediatrician, to manage development, and any neurological issues
Sleep study technicians
A nurse specialist to coordinate care
Physio-, and speech and language therapists
Social care/services, to help with home care and financial support
Psychologist or counsellors

update: 11/01/2012

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