Refilling Intrathecal Drug Delivery Pumps Outside the Clinic: Survey of Practice in the United Kingdom.

Introduction: Many people with spasticity or pain managed with intrathecal drug delivery pumps have very impaired mobility and are at high risk of developing pressure sores, which may prevent them from travelling to a clinic in their wheelchair. Some patients may be transported by stretcher, but some will be bedbound at home. Routinely refilling all pumps at home is established practice in several parts of Europe and USA.

Method: Freedom of information requests were emailed to trusts and health boards hosting intrathecal drug delivery services in the UK and Ireland, asking about frequency of home visits for pump refills, how many staff travelled, use of prefilled syringes and how they would manage a patient's long-term inability to attend clinic.

Results: Detailed data was received from all but 1 of 54 active clinics in the UK, but Irish legislation did not allow this data to be returned. Two thousand one hundred forty-five patients were managed with intrathecal pumps in the UK. Eleven services had less than 10 patients and 5 had more than 100. Twenty-one services did less than 1 home refill/year and 9 did more than 12/year. Twenty had travelled to patients more than 50 miles from the clinic, or to an island. Twenty-two services would send 2 clinicians and 10 would bring prefilled sterile syringes, rather than aspirate from bottles at the bedside.

Conclusion: FoI requests can generate a very high response rate in the UK. Many services manage a small number of patients, which would make it difficult to provide cover when a single-handed clinician is unavailable or to train a second clinician.