I think after 120 injections (as at 20th January 2020), I think it’s safe to say I’m now ‘at home’ with Lanreotide (Somatuline Autogel – Somatuline Depot elsewhere).
I was fortunate enough to actually have the injection ‘at home’ via an insurance policy for the first 4 of the years of my treatment. That was really handy because it was informal, chatty, and I had excellent ‘continuity of service’ with the same nurse administering 80-85% of those 54 injections. I only had 3 other nurses over that period covering my local nurse’s holiday etc.
When I retired from work, I then had to travel to my local hospital and take my turn amongst the ‘great unwashed’. Don’t get me wrong, I have the greatest respect for the UK NHS. However, it’s also true to say my monthly ‘butt dart’ suddenly became more of a conveyor belt feeling, less chatty but in the main, the continuity effect I enjoyed previously was thrown right out of the window. I had some superb injections but I also had some ‘not so superb’ ones. There was very little continuity as my 33 hospital administered injections were carried out by 17 different nurses.
If I had to list 6 common discussions between NET patients, issues with their injections of somatostatin analogues would almost definitely be on the list. Common administration problems with Lanreotide include untrained administrators, fridge problems, incorrect injection site, pinching instead of stretching, plunge speed, painful injections and many others. All of these issues can be linked to training and continuity. One thing NET patients like is an expert injection by the same person if at all possible. It’s also true to say that these issues can cause some anxiety amongst patients leading up to and during the procedure.
I was therefore delighted to be signed up this week for a service in UK called HOMEZONE+ whereby a trained nurse will come to my house and administer my injection. Although it’s been available for some time, this element of the service has not been particularly well publicised. The drug will arrive a few days prior and be stored in my fridge ready for the injection day. For those worried about transport, the drug arrives by courier in a refrigerated vehicle. The service is provided by a third-party via NHS, at no cost to the NHS or the patient, as it is a service funded by Ipsen Ltd.
Now …… I got wind of this service 6 months prior to starting but it took me sometime to discover what it was all about, despite a lot of ‘digging’. I had previously heard of other elements of this service whereby the drug is delivered directly to patient’s house for self injection, injection by a trained carer or for injection at a third-party site such a local GP (PCP). However, the service I’ve signed up for is none of those, this is a service where a trained nurse will come to my house and administer the injection. Happy days. Royal Bournemouth Hospital is actively promoting the scheme to patients being administered with Lanreotide.
But ….. It was also suggested to me that not all hospitals are making the service available. If this of interest to other UK patients, I suggest you initially make contact with your specialist nurse or doctor and enquire (….. and if it was me, I would ask why not if they’re not making it available!). I’ve probably documented all I know but happy to chat more with UK patients about the scheme – you can message me here: Message Ronny Allan
What about outside UK?
I researched to see if other countries have something similar for Somatuline (Lanreotide) – please note not all patients will be eligible so you need to check first:
1. The Netherlands. I attended ENETS Barcelona and sat in on a presentation from a Nurse in The Netherlands who described a similar scheme. The presentation was entitled Home Injection Service for Somatostatin Analogues so may also include Octreotide. Contact is Wanda Geilvoet at the Erasmus Medical Centre in Rotterdam.
2. USA. Ipsen US appears to have a similar scheme through their Ipsen Cares program. It’s called “Home Health Administration (HHA)”. This is available for patients who are unable to receive their Somatuline Depot injections at the doctor’s office. Eligible patients can have a nurse visit their home to administer their injections. There is no cost to the patient for this option. HHA must be requested by the doctor and the patient must be enrolled in IPSEN CARES. The Nurse HHA Program is an additional offering of
IPSEN CARES available via a doctor for all eligible patients prescribed
• A physician must prescribe Somatuline Depot to be administered by Nurse
Home Health Administration for the patient.
• The program is available to most patients covered by commercial insurance
• Patients may not participate if prescriptions are eligible to be paid in part or
full by any state or federally funded programs, including, but not limited to
Medicare or Medicaid, VA, DOD, or TRICARE.
• Residents of Massachusetts, Michigan, Minnesota, and Rhode Island are not
Click here for more details.
3. Canada. The Ipsen Canada site is spare but according to one local patient, it’s possible to arrange for delivery and administration of the injection. There may be difference between provinces so always ask what’s available. Click here
4. Australia. There seems to be a programme called ‘Assist’. Click here for more details.
5. Republic of Ireland. They have the same service as UK, also called HomeZone. They will send a trained nurse out to your home monthly to do the injection for you free of charge. To arrange, the number is 01 4291820
I will add other locations as and when I find out.
Let’s share data!
I’m sure there must be more countries involved so please let me know. In fact, would UK patients let me know if you are on the ‘Homezone’ scheme where a nurse comes to your house and administers the drug, and via which hospital was this arranged. I’ll update the blog so we can all find out about it.
How’s it going so far?
On 20th January 2020, I had my 33rd ‘HomeZone+ nurse administered injection (over 90% of these by the regular nurse) and a permanent nurse allocated to my area. It’s a first class service from the main UK provider – Healthcare at Home (HAH) (I’m told Lloyds Pharmacy do certain areas). I’m told which day it will arrive and I receive two text messages with timings, so it goes from the window of a particular day to a window of 4 hours and then 2 hours, which allows me to get on with my life. The Nurse separately makes an appointment to come and administer the injection with an approximate time. This works excellently too. I set an alarm to get it out of the fridge (I allow 60 minutes for maximum flexibility. The injection is given very efficiently and my next appointment is made ready for 28 days time. I also found out that sharps box provision and collection is available through the programme, another bonus.
SANDOSTATIN LAR (OCTREOTIDE) PROGRAMMES
Novartis has similar programmes – click here.
You may also appreciated my other blog posts on Somatostatin Analogues and Lanreotide (Somatuline):
Thanks for reading
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