Homecare Information for Patients

Treatment for lysosomal disorders are usually started in the hospital setting but can then be given at home.

Intravenous therapies are initially administered in the lysosomal disorders unit for the first 2 infusions and then after this infusions are administered at home. It is expected that patients will be able to learn to administer their own treatment and full training will be provided.

The homecare company will contact and meet you before you start your home therapy, to introduce themselves and to go through the equipment that you will need to keep at home. All Enzyme replacement therapy (ERT) products need to be kept in a fridge that will be provided for you if you wish.

The homecare nurses can provide 3 different levels of service:

  1. Training service – a full training service will be provided and this will include necessary skills such as  inserting an intravenous needle, set up and administration of the treatment and removing the needle/taking the infusion down. All patients and/or carers will be expected to participate in this if they would like to receive treatment
  2. Home infusion service - in rare cases it may be possible for the nurses will come to your home and set up and manage the infusion completely.
  3. Emergency service – our homecare companies operate an on call service for problems out of hours and also a temporary infusion service if necessary 

CUH has a contract with various suppliers to provide our homecare service and this can change every 3-5 years.

Current providers include:

HaH – Healthcare at home

LPCH – Lloyds pharmacy clinical homecare

Pharmaxo

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