Calling UK tocilizumab or epipen users: How do yo... - PMRGCAuk

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Calling UK tocilizumab or epipen users: How do you dispose of your self-injector? Who arranges it?

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53 Replies

Someone on the Vasculitis forum is encountering difficulty - is expected to attend the hospital to be handed her self-injection medication because they claim there isn't a protocol for disposing of the needle.

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53 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Saw that myself, and thought it was odd.

Why can’t patients have a “sharps” box similar to those used by diabetics.

When full, OH’s went to GP surgery (fully label and sealed) no issue - or the dispensing pharmacy.

Have rules changed because of Covid maybe?

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

Don't think so - I suspect it is a lazy department ... I know it can vary - but diabetics MUST have a system ...

PMRpro profile image
PMRproAmbassador in reply toDorsetLady

cambridgeshireandpeterborou...

says the pen is to be disposed of by returning to the community pharmacy unless there is a needle guard which means it can be disposed of in household waste

Telian profile image
Telian in reply toDorsetLady

GP surgeries in Essex stopped taking them a few years back - community health centres had an exchange service for diabetics but what happens now I wouldn’t know. I used to manage the contract back then. Our local Pharmacy takes hubbies here in Leeds/ Wakefield.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toTelian

This was pre 2013 when hubby still around …and as ever, all things change over time.

Telian profile image
Telian in reply toDorsetLady

I know back then GPs provided a sharps exchange service for diabetics until they heard the local Health centres provided it and stopped it immediately. It’s still all around budgets.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toTelian

Unfortunately it is - and things are only going to get tighter following the money spent on COVID.

JGBH profile image
JGBH in reply toTelian

I believe it’s all to do with money, as you say…. As usual.

JGBH profile image
JGBH in reply toDorsetLady

No, this is not new. It has been like that for a few years in my area.

SheffieldJane profile image
SheffieldJane

I have a private company who deliver my Tocilizumab in a refrigerated box, initially one month at a time, now 3 months. I put them straight into a Tupperware container in my fridge. They also supply antiseptic wipes and sharps. When they deliver, they take away my sharps disposal box when it is full. I receive a phone-call before they come, they ask me if I need a new sharps disposal box, new sharps and new wipes and whether there are any issues. I once spoiled a dose and they supplied a replacement without any problem. They are courteous and efficient. This was put in place for me at the outset. I saw that query on the Vasculitis website and wondered whether my flawless system only applied to Tocilizumab somehow, or my NHS trust (Leeds).

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

That it is TCZ and Leeds wouldn't surprise me!!!

MrsNails profile image
MrsNails in reply toSheffieldJane

Mines the same for MTX - via RJAH in Oswestry, absolutely flawless system!

JGBH profile image
JGBH in reply toSheffieldJane

Well you’re very lucky indeed! Even supplying wipes…. No such sophistication here, at the Derby Royal. The RA department every tried to make me drive to the hospital pharmacy to collect my Tocilizumab injections! I protested since I am not able to drive atm… I really had to kick a fuss… quite shameful. However they agreed that the pharmacy would deliver my injections, they use a taxi…. They gave me a sharp box but no help for collecting once full. It’s money saving, I suspect. That’s no really acceptable when one needs to use such injections. In the past when I was on Etanercept a special company delivered the injections (no wipes) and a sharp box plus collected the full box. So much more efficient. It looks like many people are left to take responsibility for many things which used to be the prescribing hospital’s responsibility.

Rugger profile image
Rugger

I am also under the Leeds hospitals, but my TCZ and sharps bins are delivered every 3 months by a national pharmacy chain - actually from Essex! Like SheffieldJane, they phone to check what I need, text me to give me the delivery time slot, including the driver's name, who takes away my sharps bin when full and brings a new one.

MrsNails profile image
MrsNails

I think Martin handed the last one he used to the paramedic & he returns Unused ones to the Pharmacy when he picks up a New ‘Script. (Epipen)I have a Sharps Bin for my Methotrexate Injections, they take full ones away & bring me a New One when needed with my Injections.

PMRpro profile image
PMRproAmbassador in reply toMrsNails

Exactly - definitely not rocket science is it?

Teekay2 profile image
Teekay2

Lloyds Home Care deliver myTCZ,3 months supply at a time with a sharps container which they take away on next delivery.

piglette profile image
piglette

Surely there are other people in the same boat in the area. What does the hospital suggest as to disposal?

PMRpro profile image
PMRproAmbassador in reply topiglette

They insist she must attend the hospital clinic to be handed the self-injector to inject herself! She is immunocompromised and they would like to do it at home but the nurse says it can't be done as there is no protocol for disposing of the needle!

piglette profile image
piglette in reply toPMRpro

I was wondering what does the hospital suggest she do? I suppose she has not been yet, so she won’t know. The nurse is not doing it at her home as she has not got a facility to dispose of the needles. There must be a facility at the hospital. It does sound like they are trying to find an excuse to ditch home visits on the other hand, if they are anything like our district nurses.

PMRpro profile image
PMRproAmbassador in reply topiglette

Oh yes - been attending every couple of months. It is self-injection but they say she can't do it at home because there is no protocol for needle disposal - which of course is tripe as they must have patients with epipens and diabetics in the same boat. All she needs is a sharps box - but there is no reason I can see why her husband couldn't take it in its pack to the local pharmacy or GP practice who will have a sharps box. Just a lazy nurse we suspect ...

piglette profile image
piglette in reply toPMRpro

I think we are saying the same thing. She will not be the only ones with the problem. The district nurses will do anything to get rid of you. You have to do a real sales job to keep them coming.

PMRpro profile image
PMRproAmbassador in reply topiglette

Not the district nurse - hospital nurse ...

piglette profile image
piglette in reply toPMRpro

I did not realise hospital nurses did home visits I thought they handed it over to the district nurses.

MrsNails profile image
MrsNails in reply toPMRpro

You can buy Sharps Boxes from that well known online site! I was at the surgery recently & they refused to take a Sharps Box off the person in front (Rules changed since Covid)

Whoever supplies you with your injection should supply you a Sharps Box - Epipen Users don’t need one because if they use an Epipen they are heading to hospital anyway, Martins never had one, l had a tiny one when he was little for Needles but rarely used anyway.

Which Medication is the person talking about? What do diabetic do these days as a lot of them have ‘Pens’ or Auto Injectors……

PMRpro profile image
PMRproAmbassador in reply toMrsNails

It's a monoclonal antibody (same group of drugs as tocilizumab).

If you get a Big A box - how do you dispose of it? The council?

Sophiestree profile image
Sophiestree in reply toPMRpro

Our council will take sharps boxes. You have to fill in an online form and arrange collection.

Sophiestree profile image
Sophiestree in reply toPMRpro

looking on the nhs website you can get your gp to prescribe a sharps box, then via your local council for disposal if you don't have a system like mine.

PMRpro profile image
PMRproAmbassador in reply toSophiestree

Exactly

mgrogers99 profile image
mgrogers99 in reply toPMRpro

Some advanced practice nurse needs to write a policy and procedure and have it approved...

PMRpro profile image
PMRproAmbassador in reply tomgrogers99

Exactly - but that is probably the problem - she doesn't want the bother ...

mgrogers99 profile image
mgrogers99 in reply toPMRpro

What goes through my mind is whether she has a boss!!! I am so used to having everything very regulated...often annoying but on the other hand I could always find the answer/solution.

PMRpro profile image
PMRproAmbassador in reply tomgrogers99

I'd certainly be asking questions - and partly why I asked here since there are lots of people in similar situations.

Devoid profile image
Devoid

Mine are collected by the delivery service, they leave 1 or 2 sharp boxes so never without and collect at same time as dropping off injections.

JGBH profile image
JGBH

I have also been told to take the sharp bin back to the RA clinic… for the same reason. Not sure I will be able to do so unless I have an appointment and am driven by a community volunteer. No one seems to want to take responsibility for anything nowadays. In the past the sharp bin was collected by the company who delivered the injections (that was for Etanercept) and a new bin was delivered at the same time. Gone are those days it seems.

PMRpro profile image
PMRproAmbassador in reply toJGBH

I suppose Covid has a lot to answer for. However, given the size of a sharps bin - it isn't something that needs to be done every time is it?

JGBH profile image
JGBH in reply toPMRpro

If Covid plays a part in this, then some areas seem not to be affected, look at Sheffield Jane, she is getting an excelllent service, even getting wipes!... Also I was given a rather small bin. Not helpful. Some hospitals are obviously very well organised and managed.

PMRpro profile image
PMRproAmbassador in reply toJGBH

The usual postcode lottery ... It isn't a "National" Health Service now.

mgrogers99 profile image
mgrogers99 in reply toJGBH

I can take my Sharps container to the local fire station.

JGBH profile image
JGBH in reply tomgrogers99

No such facility where I live furthermore I have to rely on volunteers so it’s extra pressure on a small team who are overworked. The hospitals should organise themselves better to arrange collecting as was the case not so long ago.

Sophiestree profile image
Sophiestree

I live in East London/ Essex borders so can go to hospitals in either area. I was under the Barts area for diagnosis and they contract something called Clinical Homecare run by Lloyd's Pharmacy. Initially visited by a nurse to go through the procedure and given a phone number should any problems arise.I received a sharps box, wipes and two months of toc. They text about 2 weeks before the next delivery and you can then email requesting anew sharps box or extra wipes. Very efficient and always at the time they state.

PMRpro profile image
PMRproAmbassador in reply toSophiestree

That's the same as Leeds - a general NHS service it would seem.

Sophiestree profile image
Sophiestree in reply toPMRpro

do you think it's anything to do with teaching hospitals? Have more money?

PMRpro profile image
PMRproAmbassador in reply toSophiestree

More experience I suspect

Sophiestree profile image
Sophiestree in reply toPMRpro

Yes, true

Chrisellie profile image
Chrisellie

HiI was supplied with sharps boxes as required with my delivery of Tocilizumab . If you call them they should help…. Or

You can take them to chemists.

GrandmaPirate profile image
GrandmaPirate

In Belgium you just bring expired epipens to the pharmacy. I assume you can do that in the UK too. All expired medications have to be collected and disposed off in a controlled way. None should go into normal waste.

Sallyaches profile image
Sallyaches

When I had Methiotrexate injections in Oxford I had to have a special sharps box as it was a Cytotoxic and not for the general incinerator. The G.P. provided this and I returned the full box when I went for my monitoring blood tests.

MrsNails profile image
MrsNails in reply toSallyaches

Yes they have a Purple Lid….

Estellemac profile image
Estellemac

The hospital told me the same. No one even the Doctor or pharmacists had any idea what to do with them. The council sorts it out for anyone needing a sharps bin service. They have a local contractor delivers the empties and recycles the full ones. It’s in your local council website under waste removal. It’s free.

Odosmum profile image
Odosmum

I don't take tocilizumab but I am currently on adalimumab and prior to that, etanercept. Both these prescriptions are authorised by the Rheumatology department of the local hospital and medications are delivered directly to my home, along with a sharps box, via a special NHS contract. My local pharmacy is not involved in the process at all. When the company phones me to arrange delivery, they ask if I need another sharps box and will take any full ones away. This is in Scotland.

Forestlady profile image
Forestlady

I am also on tocilizumab injections. Mine are delivered to my home monthly by Lloyds Healthcare, prescribed by my Rheumatologist., which is, I believe, under a contract with the NHS. Lloyds deliver sharps boxes and take away when full. So sorry you are not getting this service. It is bad enough having to go through with all of this and I sympathise that you have the additional disposal problems.

PMRpro profile image
PMRproAmbassador in reply toForestlady

Not me - someone on another forum ...

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