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Ronny was diagnosed with Metastatic Neuroendocrine Cancer in July 2010 after presenting with weight loss, iron deficiency anaemia and facial flushing (Carcinoid Syndrome).
The Somatuline 'reservoir' forming in the deep subcutaneous tissue[/caption]
I think after 87 injections (as at 11 July 2017), I think it's safe to say I'm now 'at home' with Lanreotide (Somatuline Autogel - Somatuline Depot elsewhere). I'm looking forward to celebrating my centenary 'butt dart' in a years time!
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% 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 formal, less chatty and the continuity effect I enjoyed previously was thrown out of the window. I had some superb injections but I also had some 'not so superb' ones. There was no continuity as my 33 hospital administered injections have been 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.
side view of Lanreotide with needle cap off but with plunge protector still on[/caption]
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 couple of 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 ago but it has taken 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
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 programmes. 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. Click here for more details. You will note other schemes including help with co-pay and free medication.
3. Canada. There is not enough detail on the Ipsen Canada site to say there is a scheme but worth asking. 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, 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.
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 post so we can all find out about it.
On 10 Aug 2017, I had my first 'HomeZone nurse administered injection and it was a first class service from the provider Healthcare at Home (HAH). The injection arrived last week and was placed straight into my fridge. I was told which day it would arrive and I received two text messages with timings, the second one was a more precise time allowing me to get on with my life. The Nurse then made an appointment to come and administer the injection. This worked excellently too. The injection was administered very efficiently and my next appointment was made ready for 28 days time. I also found out that sharps box provision and collection are available through the scheme, another bonus.
So far so good.
You may also appreciated my other blogs on Somatostatin Analogues and Lanreotide (Somatuline):
Lanreotide - it's calling the shots
Lanreotide vs Octreotide
PoNETry - An Ode to Lanreotide
A video showing how Lanreotide works
Somatostatin Analogues and Delivery Methods in the Pipeline
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Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!
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