Getting mucked about with H C @Home and Enbrel delivery!

[Mandalou]

There I am ticking along nicely about 8 months into my first Biologic Enbrel backed up with 400mg of Hydroxychloroquine daily. Getting my deliveries once a month and organised it finally with Health Care at Home that my delivery ties in with my days off from work abroad. Consultant pleased at last appointment says I am getting close to remission, next appointment in September. All in all quite standard.

On June 30th I received a letter from H C@Home saying my deliveries going forward would be every 8 weeks or twelve weeks and not to worry I need do nothing as they would contact me with news of my new delivery schedule.

Last week with two doses left in my fridge I thought I had better phone them.

Well they said my prescription hadn't been sent 'you are on Benepali right? '

'No' I said I'm on Enbrel but I have received this letter yada yada yada........

'Please phone back next week' they said.

So I take my last remaining injection on Wednesday last week and phone them again last Thursday.

' Here' I say a bit narked.

' I thought you were going to contact me about my new delivery schedule?'

I said ' If I am going onto Benepali then I expect at the very least a letter from the Hospital explaining as much'

The woman from Health Care at Home, says ' how do you know about Benepali? '

' Because last week someone mentioned it on the phone and I do my research I say'

The upshot of all this is that there has been a mix up between hospital and Health Care at home.

If I hadn't contacted them but just done what the letter said then I definitely wouldn't be getting any drugs at all.

The lady I spoke to on Thursday was going on holiday and was passing my problem to the Pharmacist apparently my notes said the prescription is in the post. Whether it's a prescription for Enbrel or Benepali who can possibly tell. No one phoned me back on Friday, I emailed them on Friday afternoon but the response was that it takes one business day to respond to queries ( big sigh)

Anyway, what I'm asking you kind folks is whether I should stick to my guns and refuse the Benepali (if that's what I'm going onto) as no one has told me I am being switched, no letter, no phone call, or just accept it as of course the NHS are going to go for the cheaper option.

Plus as I sit here on Sunday evening my fridge is empty of drugs and I'm due to inject on Wednesday and through no fault of my own or through no lack of trying it's looking like I shall be without my regular dose of Enbrel this week unless they can rush it to me. You would think they would understand that breaks in treatment are undesirable.

Me thinks Mandalou will be having a busy day on the phone tomorrow!

[helixhelix]

I did once kick up a big stink about a failed delivery and HAH do have the ability to do immediate one-off deliveries. I felt a bit bad afterwards as a man drove from Bradford to London in a van with one small parcel of drugs for me, but I've never had to do it again. However it does depend on them having a prescription - they can't do anything until hospital sends it.

[Mandalou in reply to helixhelix]

Thanks Helix,

I know what you mean about kicking up a stink. Put it this way, Health Care @ Home certainly know who I am after these last couple of weeks!

I do feel that sort of embarrassed British apologetic feeling, at the same time as wanting my blinking drugs and wanting to be treated properly.

All the best.

Mx

[EmmaS-NRAS NRAS]

Dear Mandalou,

We're so sorry to hear about your recent experiences and this is definitely not acceptable. Our CEO, Ailsa, has read your message and has been in touch with Healthcare at Home this morning and will get back to you shortly. In the meantime, we encourage you to take a look at our Biosimilars section on our website which can be found here: nras.org.uk/biosimilars

Ailsa is also on the NHS National Biosimilar Medicines Programme Board and will be reporting back to them about your experiences.

Kind regards

Emma-NRAS

[Mandalou in reply to EmmaS-NRAS]

Hello Emma

I am immensely grateful for your trouble, really thank you so much.

I left a message for my Rheumy nurse and she called me back immediately and she is now on the case too. She says phone her again tomorrow morning if I haven't heard anything.

I have heard nothing back from H C @Home since a response this morning to my email of last Friday. This explained there had been a mix up of accounts regards Enbrel and Benepali and I knew this of course. Let's hope the powers that be are working in the background to get this sorted.

So I am still no closer to getting my Wednesday dose, my Rheumy Nurse says I shall be on Enbrel for this cycle then Benepali going forwards.

Thank you for the link to the Biosimilar info. I shall make sure I read up on everything possible.

Appreciate your intervention.

Very best regards.

Mandalou.

[Mandalou in reply to EmmaS-NRAS]

Hi Emma

Have found out that the issue is with HC@home putting me onto 12 dose deliveries once every three months because I am no longer a new user. However the prescription sent by the hospital was for the standard 4 dose delivery I have been receiving up until now. Therefore HC@home rejected the prescription and no one passed this information on to me.

Despite repeated requests from HC@home to the hospital to rectify the error this has not been done and subsequently I'm stuck in the middle of both parties with no drugs!

The latest is that I have been given an emergency pharmacists number by H C@home.

I have to pass this on to the Rheumy nurse who in turn will phone and get the fax number and send the updated 12 dose prescription to HC@home.

If this goes to plan I will get a delivery on Thursday so just one day late.

I have left two messages on the Rheumy nurses help line and will wait in all day to hopefully get a call back to get the ball in motion.

Apparently the Benepali issue wasn't the reason for this bureaucratic mix up just an added spanner in the works to confuse matters.

Wish me luck.

Mandalou.