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

Tablets are usually delivered to your home by a delivery company providing three months supply at a time. Full safety and storage information will be supplied by both CUH and our homecare colleagues.

Infusions can also be given at home if  this is something you would like to consider. The first few infusions (usually up to 6) will be given in either our department or at your local hospital. Providing these are uneventful it is usually possible to receive treatment at home.

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. Home infusion service - the nurses will come to your home and set up and mange the infusion, and clear away before they leave.
  2. Training service -  should you or your family wish to learn how to do any  or all of the infusion process, they can provide training for you to learn.
  3. Emergency service - many patients choose to become independent in administering their own infusions but still may require the 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. Our current home care services are supplied by BUPA Home Healthcare. 

BUPA Home Healthcare 

We value your opinion about the services you receive from our homecare suppliers and welcome any comments you may have about this.