Policy for use of intrathecal pumps (FOI)

​​​​​​​​​​​​Request

What is the address of the base refill clinic in Jersey for intrathecal pumps?    

A

How many adults with pumps for spasticity or dystonia are managed with intrathecal baclofen?

B

How many adults with pumps for pain are managed with intrathecal opioids?

C

How many children under the age of 18 with pumps for spasticity or dystonia are managed with intrathecal baclofen?

D

How many children under the age of 18 with pumps for pain are managed with intrathecal opioids?

E

Approximately how many pump refills are done each month at the usual locations?

F

Are people attending on a stretcher for refills accepted?

G

How often are pumps refilled away from the base hospital clinic? 

H

What is the furthest that has been travelled from the clinics to refill a pump, in miles or time, in the past 3 years?

I

If, for the first time a patient is unable to attend the clinic by wheelchair or stretcher for a planned refill, because of acute illness or transport failure and they are expected to recover and be fit to attend refill clinics in the future, they are 90 minutes drive from the usual refill service base and there is no closer local service which could refill the pump before it runs out, would the plan be:-

a) no refill and when pump runs dry advise local doctors to manage withdrawal symptoms with medication by another route; or

b) staff from base clinic travels to refill pump at patient’s home or local hospital, before it runs dry. 

Who would travel?  A doctor who runs the service, a doctor in training who is rotating through the service or a nurse who refills pumps in clinic?  

Is an arrangment made for a second person to travel to chaperone, check procedure or open vials to maintain sterility?  If so, then who is this person? Or is a video call to check procedure or programming made?

When refilling away from usual clinic, would a pharmacy be asked to prepare a sterile syringe with the total drug to be injected into the pump, or would an arrangement made to aspirate from separate vials at their home, as is usually done in clinics?

c) patient transferred to your hospital for in-patient management and refill.

d) Other, please explain.

J

If the pump has been refilled it once while they are acutely unwell, but subsequently the patient is unable to attend the out-patient clinic by wheelchair or stretcher for any future refills, and resides 90 minutes drive from the usual refill service base, and there is no more local service which does home refills to take over long term management,  would the plan be:-

a) no visits for further refills or dose reduction;

b) no further refills but home visits to reduce ITB dose in stages before pump runs dry; 

c) regular home visits to refill pump until end of battery life, but pump not replaced;

d) regular home visits to refill pump indefinitely and pump replacement at end of battery life;

e) patient travels by stretcher ambulance, admitted overnight for regular refills; or

f ) other, please explain.

Response

Health and Community Services’ Neurology and Pain Service clinics are based at Enid Quenault Health and Wellbeing Centre, St Brelade, JE3 8JW.

A

There are fewer than five individuals managed with intrathecal baclofen pumps for dystonia or spasticity. As numbers are small, disclosure control has been applied to protect the privacy of individuals. Article 25 of the Freedom of Information (Jersey) Law 2011 has been applied.

B

None.

C abd D

No intrathecal treatment is delivered to children in Jersey.

E

Due to the small number of individuals receiving intrathecal therapy, fewer than five pump refills are performed each month. As numbers are small, disclosure control has been applied to protect the privacy of individuals. Article 25 of the Freedom of Information (Jersey) Law 2011 has been applied.

Pumps are refilled on a 4-monthly basis.

F

This situation has not been encountered locally.

G

Pump refills are only performed in the clinic.

Not applicable, as per response to question G.

I

This situation has not been encountered locally.​

J

Not applicable, due to the size of the island.

Article applied

Article 25 - Personal information

(1) Information is absolutely exempt information if it constitutes personal data of which the applicant is the data subject as defined in the Data Protection (Jersey) Law 2018.

(2) Information is absolutely exempt information if –

(a) it constitutes personal data of which the applicant is not the data subject as defined in the Data Protection (Jersey) Law 2018; and

(b) its supply to a member of the public would contravene any of the data protection principles, as defined in that Law.​