Hands up who has been happy with Healthcare at home/HAH?

So far I am happy with HAH,

I started getting the delivery of meds last year. Before this I used to pick up from the hospital. Reason being that apparently they were asleep on the job and took either the wrong meds to ppl or no meds at all. So the NHS(least in my area)showed them the door!

What has been your experience with HAH?

I ask bcz I am waiting to get my first Enbrel batch today. After being switched to Benepali from Enbrel and having an awful time of it months ago. You can imagine I'm desperate to get back on to Enbrel and get my life back.

The skeptic inside me says they may fluff up my order and pull the Benepali(old script)instead as that's what I was having for 6 months up to now. I have checked and tried to protect against this happening when they called to arrange delivery, but ya never know! The saying "sods law" comes to mind!

D

40 Replies

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  • They went through a very bad period of being awful. I know NRAS got involved. Since then, they've had a few blips but I can't complain too much. They're a big company and, of course, errors do happen but on the whole, they seem to get the job done.

    Good luck.

  • Hi

    Have been following your story, in the background, with great concern for you and great interest. I am in a similar position to you and others on here. Enbrel has given me remission from pain and lack of mobility for the last three years. Out of the blue I was told by a nurse that a decision had been made about me by unknown people and without my knowledge or consent that I was being switched to Benepali. I refused to give consent and am now appealling the decision through the CCG as the hospital said the decision was nothing to do with them!!!

    Feel very let down.

    So ....... when last delivery of enbrel due I asked HaH what they were planning to deliver! I was relieved when they said enbrel but so freaked out was I that I might be tricked !!!!!! And get Benepali, that I asked the delivery driver to wait until I opened it. It was enbrel and I started breathing again. I nearly cried, I was going to refuse to accept the Benepali.

    HaH have been brilliant and so understanding. They have never let me down. I may have been fortunate.

    Hope you are fortunate too.

    All the best

    BG

  • Hia BG

    Thanks for your feedback and concern also, very sweet of you.

    It was prudent of you to say no to a Benepali, not bcz it's bad per se, after all nothing is all bad, and some find it works for them. But prudent for not switching when you was having good success with Enbrel. My rheumys used to say "If it ain't broke don't fix it! "

    Now not so much. It's more like "Lets play Russian roulette with your meds bcz we need money honey!" ;-)

    I was never verbally informed, unlike yourself. I got the stock letter. Saying this is happening, wait for it.

    I had no preconceived ideas, or preconceptions of it being bio-not simiar enough, imo that is. I didn't even Google it or do any research until a couple weeks ago. Which was 5 months or so after taking it. I do feel badly for ppl like Barrister in post below. Bcz they maybe all worried for nothing, bcz of my neg experience posting here. As I said it works for some, just not for me.

    The doorbell is going to ring any moment now, yikes...scared! I will do as you did, and open bag with driver. This is like a lucky dip, I really hope I don't get the booby prize!

    Wish me luck guys!

    D

  • Hi, try and keep on Enberel if you can. I have only been on Benepali for one week and I have gone from remission to painful hands, feet , elbow and shoulders. Can't believe how quickly I have deteriorated!

  • Dear Furle,

    I am so very sorry to hear you are in trouble and so soon. I really wish it was different and you were not suffering again. It all feels so wrong that you were in remission and then this!

    Have you thought of using the yellow card system to report the changes and deterioration? Have you contacted the hospital? I think I would contact everyone and ask GP to get some bloods done??? If these drugs are the same or nearly the same this should not be happening ... full stop. Can you ask to go back to Enbrel now?

    Sorry for all the questions. I feel so upset for you.

    Given everything thank you for thinking of me. I am not going to consent to any change. The letter is drafted.

    Please keep in touch and update us all.

    Thinking of you lots.

    BG

  • I will ring the hospital next week as I am willing to give it another week to show that I have given it a chance. I will let you know how I get on. Thanks for your concern x

  • I've been having Enbrel for the last 18 months whilst I was in Saudi Arabia. I used to get it from my hospital. Now I'm back in the UK and was called last week by the local hospital to tell me that I would be contacted by HAH ( I think!) but that she didn't know when. I was also told that they don't prescribe Enbrel so it would be Benepali and that it was "just as good" as Enbrel! After reading on here about some of the issues both with delivery & Benepali, I'm naturally, quite anxious. Clemmie

  • Sorry you are in the same boat.

    I share your concerns about the changes. I have also read other folks stories about switching and I have yet to be convinced benepali is acceptable for those who are made to switch when in remission. It is scary and feels like they want me to do a drug trial without parameters.

    Have been doing lots of reading and research to try and ease my concerns but not there and led to me contacting the CCG. (Correspondence ongoing) I understand the use of a round robin letter is not recommended. Everyone should be assessed by a doctor. I was assessed by a doctor at the hospital to stay on enbrel but 'someone' overruled that decision. I feel sure in saying that ,guidelines say that, patients who are in remission should not be switched without informed consent. And a clinical decision including consultation with carers and other requirements.

    It is a minefield and I do feel in danger. It helps to know I am not alone.

    BG

  • Well I'm not even in remission yet so it isn't that. Apparently Addenbrookes has a policy of not using the "named" drugs. When I went for my first appointment and was asked if I was allergic to anything and I said Maxolon and Stemetil ( anti emetics which I am VERY allergic to) the doctor said she didn't know what they were by those names and she thought they were PPI's! Didn't instil me with confidence. Clemmie

  • I am so sorry to hear your experience st Addenbrooks. There seems to be so many variations of experience of the way the switch of biologic is being handled. apparently a biologic should never be switched purely for financial reasons. It has to be a clinical reason as well. There is so much confusion in the medical world about this as I think there has been no decisive technological appraisal released about the effects of switching. It was due at the end of 2016 but delayed. I hope NRAS will let us know when it becomes public. Meanwhile many of us remain anxious.

    I hope everything works out for you.

    BG

  • My 2 hour window for delivery is just up! No show, no call, now what!

    D

  • I started this post saying I was happy with HAH!

    Not so much now! I've been sitting on the phone, on a so called "helpline"for 30 minutes.

    The first 15 was waiting to speak to a human. Oh forgot to say the line went dead and cut me off after waiting 5 minutes previously. I obv called back a 2nd time to ask if my meds were indeed coming, is it now or never or whenever they feel like it. As by now its over the 2 hour window. I don't have any other Enbrel to fall back on and have been having a crappy week bcz of it. I need my meds!

    Anyway it's the only helpline I've ever called that doesn't have a customer number cuing system. Doesn't say...you are in cue position 11, you just sit and are expected to wait indefinitely. Hm, wonder why..maybe the idea is you hang up bcz you've no idea when your call will be taken. Are you in position 30, or 1, who knows, not me!

    Then finally a human. She says look out the window he's there she says....na-ah he ain't I said. She says can you wait a mo I'll be back, sticks me back on to the original recorded waiting mesg without telling me why I'm on hold again. Furious!

    An hour late the driver turns up, so I hang up of the voice mesg! He says he sat on his phone for 25 minutes telling them he's running an hour late. What a joke, they are not the ones waiting in, not knowing whether to go pee, or take a shower bcz the door bell might ring. Whats the point of having a 2 hour window if it's maybe 3 or more hours.

    Anyway I have my Enbrel, but instead of being happy now i'm pssd!

    D

  • Oh no! How awful. So sorry to read this. H and H have let you down badly! At least you have the delivery.

    Hope you start feeling better soon with enbrel.

  • Thanks BG!

    It's almost like I had a crystal ball and knew things would go array.

    i had a lot of my chocolate banana cake straight after, which helped me get over it lol!

    Back on track now, having taken my Enbrel today. Probably won't see any improvement till a month or so down the line though...boohoo!

    D

  • I inject on Wednesday's so will be thinking of you ....

  • There is a current wait to get through to rebook a delivery as it's just happened to me today. They announced that as soon as I got connected. Once through to them they are always helpful I have found. It was just being able to get through before that was a major issue. It's the inconsistency of the delivery guys for me and that's human nature. Some don't knock on the door loud enough to hear. I have a porch with double doors so it gets muffled if there's any noise outdoors and there was some building work opposite today. Have rebooked. Before the text/2 hour tracking service, the driver would phone you as he set off to your house from his last drop. That doesn't happen now but I understand you can track more closely on the day via the HaH website . You just need your HaH customer number.

    A couple of years ago they did have a customer queuing number ... I phoned to arrange delivery and was told I was number 74 in the queue!! No thanks! That was when they had mega issues with getting through. Hope those days are gone. I agree and I think you should be told what number in the queue you are or what approximate time of wait. Took me ten minutes today. You can email them but I'm not sure what the response is from them on that and you'd be worried someone had not received it.

    Can't recall who posted a couple of years ago about waiting in and not daring to go to the loo in case the delivery arrived. I recall they said perhaps they should wear a Tena Lady and sit on HaH patrol in the porch on a chair. Flask of tea at your side but obviously not too much! Seriously, I know it is very upsetting to be meddled about. I'm glad you got your Enbrel.

  • I had no problems till recently. I waited in for my delivery and it didn't come. Went online where it stayed "delivery failed". I was angry as I knew no one had been st my door. After a very long wait, got through to be told it wasn't at my end it failed but the injections were not at the dispatch station when the courier did his pick up. I asked why no one phoned, he laughed saying the couriers feel it's H@Hs responsibility to phone, but they at H@H feel it is the couriers duty. End result is nobody tells the patient. I was going on holiday the next day and down to my last one, so hubby had to work from home to receive it s few days later. The staff are usually very understanding when you phone them, but this guy thought it was funny, I ain't laughing.

    On another note I have had a huge success with Benepali, and my BASMI measurements improved by 80%.

  • Grr it's never funny to be worrying that you have run out. x

  • I was told that with Benepali being new the production can't keep up with the demand of ppl they have put on it. That's why it was coming one box of 4 at a time instead of 2 boxes like Enbrel. Think once the production catches up you'll get two boxes at once so hopefully you won't be caught out.

    Glad your doing well on Bene. I found that it did nothing for my peripheral AS, in fact it contributed to it. I know bcz when I stopped Bene for 2 weeks the pains went. Also caused a lot of fatigue and bad headaches.

    D

  • Interesting what you say re peripheral pains. Mine seem to progressively get worse, even though it seems to be improving the flexibility and pain in my spine. Still get rib pain and thoracic pain, but I have fusion and damage there, so have to expect pain from damaged areas. I just had an MRI as I have a large calcified deposit in the patella tendon. Not sure if they could remove it or not 😏. Methotrexate helps my peripheral symptoms to some degree.

    H@H said my Rheumy has asked for 12 weeks at a time, and they say there is a problem with production. Hopefully as you say it will catch up. Received my latest supply this afternoon 😁

  • I've been having deliveries from H@H for about 9 years and would agree that they went through a bad patch but even then, deliveries always came on time etc. Their admin has always let them down although to be fair, they do have to receive prescriptions from the hospital and sometimes it's a delay there which causes delays.

    When I was switched to Benepali (still seems as good as Enbrel for me, fingers crossed, no pun intended!) I was struck by the huge fuss: a nurse 'had to' come to oversee my first injection and this involved several phone calls to hold them off as I still had some Enbrel in stock. As agreed I phoned to tell them when I'd be injecting Benepali for the first time - and despite all the initial fuss, never heard another thing! So I just got on with it, it's hardly rocket science after all. Even I can follow a DVD tutorial...

    So my point is, H@H seem very keen to hold on to their NHS contract by offering an unnecessarily (in my case) attentive service and then fail because their admin is poor.

  • Think the reason behind witnessing first injection, is in case you have an anaphylactic reaction. It's not about your ability to do the injections. 😁.

  • Sure, I do get that, but my thinking was that if Benepali is as similar to Enbrel as we're led to believe, I surely wouldn't go into shock after all these years? Reassuring for new users, and I too valued my first demo. The NHS is constantly under financial pressure, it's a pity they have to outsource to suppliers who can't use discretion. My main point was all the initial fuss which was then forgotten!

  • Funny when I first started Enbrel. I had to show my rheumy nurse how to use the pen lol! Bcz I'd been researching a lot on youtube how to, I knew you had to "click"and let go not keep button pressed down.

    It wasn't her fault, guess she hadn't done a demo before and she looked it up with me online. And said oh yea...your right.

    D

  • Can I ask a really daft question ? What is enbrel ??

  • How does it help ra ? ( haven’t heard of these and so fed up with mine not working 😔)

  • Enbrel is one of the biologic drugs. They are a very different type of drug from the traditional ones like Methotrexate, and relatively new.

    In the U.K. they are only given to people who have tried and failed on the traditional drugs, and have a very active and aggressive disease that scores high on the disease activity score. Basically because they cost around £10,000 a year they are limited to people who are considered to really need them.

    Early on I had a bad case of "biologic envy" and wished I could have them. But I've since learnt that people can do equally well on the traditional drugs, and there's no guarantee that these new ones would work better.

  • Thank you for explaining it

  • I've had no problems so far, other than delays on delivery sometimes - seems to be with one particular driver who started recently, they'd previously been brilliant. I'm just chuffed to be given the meds in the first place, especially considering how expensive they are! I burst out greetin when I was first put on them & discovered what the annual bill was just for my medication, I felt bad for costing the NHS so much money - although it would prob cost them more in the long run if I didn't have them & became hospitalised... I think we're lucky to have these meds & HAH have been decent to me so far :) Hopefully other folk will get their problems with them sorted out.. :)

  • LadyL0u Hia

    I agree with everything you said. The part about feeling bad costing the NHS a lot of money for meds. Shame Pfizer doesn't feel the same to, and charge less for Enbrel after being approached by the NHS to strike a price break deal.

    i thought about whether if I had been asked to switch in person what would I say. I'm pretty sure I'd have said yes, for above reasons(to save NHS money) I suffered quite badly and lost a good few months of my life in bed and in a bad bad way. But at least this way I can say I gave it a go shot. Always a silver lining!

    Re being grateful for HAH bringing my meds, it is above and beyond, I agree with you there also. I was and would continued picking them up from hospital to save the trouble. But it turns out better I was told as they have the contract so may as well use it. Nurse said it would cost them more to store the expensive meds at the hospital and bcz they have to pay tax on it.

    D

  • It's why we pay National insurance. So that you get the treatment you need when you need it. I thank goodness for our NHS and long may it continue.

    J

  • Amen J

    Your so right..I forget about that part lol! Don't feel so badly now ;-)

    D

  • Hey J I'm in love with your puppy dog btw! ;-)

  • I think when you know the cost of treatment and meds you are def more appreciative and less likely to abuse the system. More people should know how much GP appointments and meds cost, it might stop folk going for minor things which don't really require the expertise of docs. :) We're lucky in the UK, the NHS may not be perfect but at least we have it :)

  • It's in the governments interest to keep your symptoms controlled and you in work paying your taxes. It would be more expensive if they were paying you lots of benefits. Although I appreciate not everyone has the ability to work with our illnesses.

  • I have had HAH delivering Enbrel for at least 8 years and they have generally been ok. However my opinion may change because for about 2 months I have been trying to get an extra delivery because I'm going on holiday for six weeks and the way my deliveries fall I would run out for the last week of being away. HAH have to get permission from the hospital, and if I haven't heard from them by tomorrow I have to get in touch, but it is only about ten days until we go away!

  • Oh dear Helenlw7,

    I hope they can pull together for you.

    What is your break point as far as symptoms coming back if you miss meds? Mine is two weeks. I can coast along really ok for that long, and to be honest in some ways better than when on heavy meds(specially Bene bcz that didn't agree with me, but even Enbrel). I did have some Celebrex to fall back on.

    I remember in the early days when I was first trying meds/DMARDS and had to stop start. I was so nervous to miss doses of any meds. My nurse sat me down and said...Look your body will thank you for it, not having to take heavy meds for a week or two will be detoxifying for you, trust me. She was right. Not saying your situ is the same, you maybe worse than I am or was. But maybe, just maybe you will could be ok to miss a dose.

    D

  • Hope it gets sorted. That's a stress we can do without before going away. Enjoy your holiday! 😁

  • Probably two weeks for the Enbrel, although I've only ever missed one week when I had a really bad chest infection and didn't even know what day it was let alone remembering that Tuesday was injection day! If I can't sort the deliveries I thought I'd adjust doses while away so I didn't miss two consecutive weeks. The first person I spoke to at HAH said I could have the delivery made to my holiday destination until I told him we were going to France!

  • HAH !!!!!. I will be without Metoject for a whole week thanks to HAH. RA nurse changed my does on 20th Sep, and I was due a delivery from HAH on the 26th Sep - no one called to tell me the order was cancelled (as this delivery date applied to previous dose). Followed up between both parties several times to see what went wrong; an instruction was given from RA nurse, but new meds not matched somehow at HAH pharmacy end and my account was frozen. So the turnaround including delivery wait is 16 of HAH working days. Bear that in mind if a dose change is made on your behalf. I now have a major flare in an MCP joint, an area RA has not been before.

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