Speechless with anger : Having waited... - British Lung Foun...

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Speechless with anger

Delamere profile image

Having waited 2 years finally got appointment with specialist. Phoned transport as l need help at the moment walking and breathing difficult especially on oxygen 24/7. No problem they said be ready for 12 o'clock. Big sigh of relief as hospital is 50mile away and l always worry about oxygen supply. Then disaster Phone call at 4pm day before appointment sorry your transport is cancelled you will have to make other arrangements or cancel your appointment. Hence the speechless with anger.When l finally asked why it had been cancelled they said they couldn't fit me in. So what changed since yesterday ??? I have never felt so vulnerable and frustrated Normaly l would fight the good fight but now l am wondering if it's ever worth it. Sorry to be such a whinging wuss l just had to let it out somewhere

113 Replies

That’s terrible.can your GP help, I’m sorry if that’s a stupid question.Or perhaps ring the hospital ? X

You’re not a wuss x

Delamere profile image
Delamere in reply to Oshgosh

Thankyou really feel like one at the moment x

That’s not good enough Delamere. You had prepared yourself for that appointment then at the drop of a hat, transport is cancelled. What will you do now? Can anyone take you? I’m spitting feathers on your behalf. Xxx💜😘

Catgirl1976 profile image
Catgirl1976 in reply to sassy59

It's so infuriating when that happens when you think you are getting something and then the door is slammed shut in your face and no you aren't!

Delamere profile image
Delamere in reply to sassy59

Frantically calling round it is so last minute for everyone

sassy59 profile image
sassy59 in reply to Delamere

Fingers crossed for you. Xxx💜💙

It's infuriating isn't it when you have waited ages for an appointment and psyched yourself up to go only to be told at the last minute no you aren't!

I would be furious as well as I hate it when I am led to believe I am getting something and at the last minute no I'm not!

So very sorry. Unbelievably maddening. Can’t help, just sending you loads of love, hugs, a giant box of tissues and your favourite chocolate Kate xxx

Delamere profile image
Delamere in reply to Katinka46

Thankyou l needed those tissues. Will treat myself to chocolate later x

Catgirl1976 profile image
Catgirl1976 in reply to Delamere

Crying does you good doesn't it?

P-i-n-k profile image
P-i-n-k in reply to Catgirl1976

A wee cry and a big chocolate bar will not solve problem but mite cheer you up a bit. Can't believe you were let down at last minute.J x

No way are you a wuss Delamere. It's unbelievable that this happened to you after such a long wait to see a specialist. Did you manage to make it to the appointment by other means or did you have to miss it? A complaint in the strongest possible terms when you feel that you can make it is in order. Whoever is responsible for managing that service wants sacking.

Sending you a hug for what it's worth xxx

Delamere profile image
Delamere in reply to CDPO16

Thankyou your hug means a lot. I will make it desperately going through options now it's just such short notice. I will be complaining in the strongest possible terms as soon as l feel better x

CDPO16 profile image
CDPO16 in reply to Delamere

Hoping it works out for you xx

Littlepom profile image
Littlepom in reply to Delamere

Hope you got there!

Delamere profile image
Delamere in reply to Littlepom

I will even if l have to go on my broom stick xx

I'm not surprised you feel temporally flattened. You really have been messed about. I hope someone can advise you on the next steps to take.

Delamere - do you have a local group of volunteer drivers in your area? Where I live there is at least one such group, who take people to hospital, or other appointments. When I do a shift at the Vaccine Hub, you can be sure there will be volunteer driver attending there too.

Most of their work is local, but not all, as far as I understand. Fortunately, I haven't has to make use of the service.

Delamere profile image
Delamere in reply to MMaud

Thankyou for your sound advice. My problem has been the short notice they have given me and trying to organise travelling oxygen supply

MMaud profile image
MMaud in reply to Delamere

I completely appreciate the timing was the major issue. My suggestion was perhaps an alternative for another time. As the volunteers around here only tend to be fully occupied on the day if they are supporting people going to the Vaccine Hub.

I also appreciate whatever arrangements you make for next time there will always be a potential for disruption at the last minute.

Delamere, I don't know which condition ails you, but, is there a local peer support group anywhere near? Those can sometimes spur on great friendships and support in unexpected ways.

You aren’t whingeing and you definitely aren’t a wuss! You are justifyably fed up and angry at having been messed about, especially after such a long wait for your appointment.I simply cannot understand why the people who are employed to coordinate and to make appointments simply cannot do their job properly. They hide behind the fallacy of being under pressure when they are simply inefficient!

Their bigfest crime in my book is not realising the stress and difficulties that their uselessness puts people like you through.

I do hope that you do get to an appointment. Try ringing your specialist’s secretary. Throw yourself on their mercy. Tell them what happened and desperately disappointed you are because you feel so poorly and REALLY need to see the specialist. These secretaries are usually really nice and mostly have a miraculous ability to reorganise appointments. Good luck.

Last year I went for a job at the Welsh non emergency ambulance place and I'm glad I didn't get the job there as I think I would have hated it!

The health service are good at wasting money that goes on managers!

Indeed

Back in 2019 I left a job in the health service due to bullying from the managers there and a few weeks later I became ever so upset when I found out that the bullies had ended up rewarded with promotions!

What got me upset was the unfairness of it all and one of my friends said how when that happened to me it had felt like salt being poured into an open wound due to the unfairness of it all.

Now time has gone by I am fine about it and forgave the bullies but in no way by forgiving them does it mean that I think it's right to bully though.

I forgave as a present to myself for my own peace of mind

It is no consolation for you but it is still going on. A young man I know, a student radiographer is being mercilessly bullied by someone in the department.

Lots of other staff got bullied as well so it wasn't like I was singled out or anything and I feel I made the right choice in leaving and now I feel those managers did me a favour and since I left lots of other staff have left as well.

Ergendl profile image
Ergendl in reply to Catgirl1976

I was bullied as an NHS dietitian, which is why I went into private practice and ended up working for private mental health companies working with patients in long stay locked ward hospitals. Much more rewarding, despite not having quite the same regular income.

Catgirl1976 profile image
Catgirl1976 in reply to Ergendl

I had an interview with the Neuroscience's department at the university hospital yesterday and they had the cheek to ask me was I married and I had asked them were they and said about our ginger tabby Baby who is 17 and how she is spoilt!

After that happened I didn't want to work there and I was happy when they rang me and said they weren't offering me the job and I thought good riddance as nowadays at interview it's not on to ask interviewees in they are married or not.

Ergendl profile image
Ergendl in reply to Catgirl1976

Gosh! I haven't experienced that since the 1970s and being asked (as a single woman) when I was going to have a baby.

Yes I have known a couple of people who were bullied out of jobs at my hospital too.

I heard that the NHS is recruiting 100's of 'super managers' with salaries of £250,000 plus. I was on Quora a while back and this doctor wrote in saying that these tend to be managers who are hopeless but it can't get rid of. He said that the system is completely hidebound by incompetent managers who have no understanding of how a hospital works and are just being used to tick boxes and burocreacy is strangling the system.

Where I worked they had bullied quite a few other members of staff out of jobs as well.

There was one girl that they really had it out for who had ended up off sick for a year with stress and they had sacked her and she had ended up getting her house repossessed by the bank after they had done that to her.

There was another colleague who got bullied out of the place who used to be a manager and got demoted to a data entry job and was sick for ages until she was pushed out of the place for being off sick!

Then we had news that this colleague had been diagnosed with incurable lung cancer back in 2017 and a year later in the December or 2018 we received the bad news that she had died and was only 53.

They had said to me when I left how I could come back to see them and write to them and my friends had said how where there's no sense theres no feeling either and originally I said that I would see about doing those things in the rare event I really really have nothing better to do and my friend said don't even do that pretend that they are dead to you after all that!

Even though I have forgiven them doesn't mean I am friends with them though after that carry on!

Oh that's not good and I am sorry you went through that.

A few years ago I got a temporary job in the hospital and well remember meeting a really bitchy supervisor. When I was introduced to the staff this woman, in front of this young employee, told me she was very slow and not much good at her job!

I was gobsmacked and really felt for the young girl.

Greenthorn profile image
Greenthorn in reply to Littlepom

Bang on!

Oh no dear Delanere, that’s really not ok and you’re definitely not a wuss! It’s infuriating when things like that happen!! Especially when you work yourself up for your appointment! I hope somehow it works out! Dee x 💐

Delamere profile image
Delamere in reply to madonbrew

Thankyou Dee x

It's not nice is it when you have psyched yourself up to do something only to have it result in nothing!

I'm so sorry you've had to go through this stress at the 11th hour Delamere, just awful.I do hope by now you're sorted with a lift. Huge hugs, Peege

Delamere profile image
Delamere in reply to peege

Thankyou so much x

That’s awful. But totally understand not being able to fight as my own health is zapping all motivation from my soul.

Delamere profile image
Delamere in reply to Maricopa

Best wishes to you thankyou for taking the time to reply

hypercat54 profile image
hypercat54 in reply to Delamere

I'm late to your post Delamere but really hope you have managed to get transport. It's absolutely ridiculous for you to be left in this position and I am mad on your behalf too.

I get how you feel as it always seems to be such an uphill battle to access medical help these days, and it always gets me feeling like you that why bother because no one else cares and feel like giving up.

Delamere profile image
Delamere in reply to hypercat54

Thankyou so much safe in hospital now they decided to keep me in xx

hypercat54 profile image
hypercat54 in reply to Delamere

Oh dear sorry to hear that. It's lucky that you managed to get yourself there then. Hope you are feeling better soon . x

You’re definitely not a wuss. What an awful and incomprehensible thing to happen at the last minute. I hope you can sort out alternative transport and get to your long awaited appointment. Sending you lots of good wishes 🐑🐑🐑🐑🐑🐑

Thankyou x

A whinging wuss?? I must dispute that statement Delamere . I think it was very unprofessional of them to give you so little notice. And even worse be so disorganized they didn't even know they couldn't fit you in until the very last minute. Plus you have waited two years. Unbelievable. I would definitely be a gibbering and furious wreck if that happened to me. Absolutely awful. I am really sorry this happened to you. Did you get there in the end? xx

Delamere profile image
Delamere in reply to Caspiana

Hoping to get there today.Worse part was trying to organise travelling oxygen as hospital is 50 mile away and l am on oxygen 24/7. These people have no idea,how difficult every day life can be. Thankyou for your kind thoughts

Book a taxi, or book a ambulance and fast darling! It's infuriating last minute cancellation! I would take you if I lived near you my Sweetheart, and where do you live?😘❤️

Thankyou so much. Think l am sorted now. I live in Scotland xx

Cool Delamere 😁🤗❤️

So sorry to hear this ,have only just read your post.Do you have local volunteer drivers who could help?

Some hospitals have them attached ,or whether council ,gp or local church volunteers?.

So cross on your behalf as face to face appointments are like gold dust.

Delamere profile image
Delamere in reply to Cloudancer

Thankyou. My biggest problems were the short notice and trying to sort travelling oxygen

Cloudancer profile image
Cloudancer in reply to Delamere

Are you any further forward sorting this?Do hope so ,what a stress and struggle you don't need.

Delamere profile image
Delamere in reply to Cloudancer

Made it to hospital thanks to wonderful home oxygen supplier and poor crippled hubby good job as they have kept me in. Thankyou forctaking the time to reply

Cloudancer profile image
Cloudancer in reply to Delamere

Although not nice being in hospital am delighted that you got there and you are being sorted -result!Holding you in my thoughts as I wish you a speedy recovery to a better state of health x

Morning, hope you manage to get to appointment. Yes NHS is inefficient, and likely to get worse this winter. Good luck to us all. Jean x

The only thing the health service management are efficient at is picking on people and it's disgusting the nasty way they treat their staff who are genuinely ill.

From reading all your messages I take it you've not had much sleep.I was devastated for you and your predicament, but was not surprised as nhs/ambulances in chaos as usual.

I hope your appointment goes well today and that you sleep better tonight. Take care xx

Delamere profile image
Delamere in reply to Suzie42

Thankyou for your kind words they mean a lot

I think a letter to the Chief Executive is called for. If they are useless too, a letter to your local newspaper. It normally means that you don't get that fiasco again.

Hi am sorry to hear that. When I asked for transport. The lady was so rude! Asking me !! I will say this only once . Is there anyone that can take you. Said no. I need to been wheelchair in. Again she said is there anyone that can take you. Well my husband might. Well you are not Vulnerable enough. This is for people who can't get out of bed. Was in tears. Wanted to put in a complaint.

katieoxo60 profile image
katieoxo60 in reply to _9carole

This is very much the case sadly when the patient rings up. There is no need for such questions , I recall on one occassion when I was on the CEV list being asked if I could use public transport it sounded so ridiculous, when you have mobility issues and sight restrictions or oxygen needs ect as well as high risk from the virus if you get it.

I really hope you get to your appointment. I agree with some of the comments on this thread re the inefficiency of the service in telling you at the last minute and poor management. However in defence of the NHS and the ambulance service, I feel it important to mention the continued underfunding of the NHS and the already overwhelming pressure on frontline service. Sadly the NHS is being gradually and systematically eroded to make way for privatisation.

I can understand how you must feel and especially given the short notice. I have been on the other side of the coin when I managed a disabled transport department which was part of the passenger transport ExecutiveWe had limited resources and a very high demand. If a request came in for a fifty mile round trip, that would have been Red flagged. It would mean a vehicle committed for quite a long time for one person and maybe also a carer. I or one of my team would have to make the decision to cancel the request, which would mean we could accommodate maybe two or three other more local journeys.

But this would have been explained on taking the booking. Definitely not the day before

Sorry for the long post but wanted to put the other side of the decision .

katieoxo60 profile image
katieoxo60 in reply to Brikel

Thank you for the info it makes it clearer to all patient transport users that it can possibly be the distance or the need for two operaters. The questions are sometimes aimed at establishing the patients need for transport and if they could use other means to get there. Our local NHS is using a local taxi company but it can be precarious.

Really feel for you and do hope you can get it sorted. How do they expect people to manage to cope, physically and mentally. It’s so hard. All best wishes for a good result.

I really hope you got to your appointment

Don't give up that's what they want this country is turning into a shit hole fight the b s you have rights too

I’m sorry you’ve had this experience and worry. Do you have cylinders? Depending on what flow you are on, one new cylinder should get you to the hospital. Once there, they can replace your cylinder and provide one for your return journey. Sometimes these organisations forget they are dealing with people and not a hospital number.

I hope the journey and appointment goes well. x

Is that your kitty in the pic then as she is gorgeous!

You are definately not a wuss or any others let down by the system. This is terrible service 2 year wait then cancelled transport at last minute. I hope you managed to arrange other means to get there and your appointment went well. Sorry for my late reply , now you and others can see the service is collapsing . Ambulance service is doing their best but many patients have to travel by taxi nowadays if they can't use public transport. I would question a two year wait for appointment. Your Gp can't help unless your health as deterriorated sadly. One of the best places to contact is secretary of the consultant you are attending , this info could be of use another time. Pals is another one that can help even if you want help with a complaint at a later date . Don't leave the complaint if you want to make one do it as soon as you can. My question would be why do you have to travel 50 miles is it special treatment only available at certain hospitals or because you live in an isolated area. ? Hope things improve for you as soon as possible. Stay safe and as well as possible do take care.

CDPO16 profile image
CDPO16 in reply to katieoxo60

I can't comment on Delamere's appointment but in 2016 I was referred to the North West Lung Centre at Wythenshawe Hospital Manchester. The distance from my home to that clinic was 40 miles. I was fortunate that my husband could take me otherwise I would have needed transport services. When I was in the waiting room at the clinic, I often saw other patients being brought in by ambulance personnel but obviously I don't know how far they had travelled.

When I worked in a care home I regularly took one lady to the disabled limb clinic at Wythenshawe ,about 20 miles from the home We always used ambulance transport and never had a problem although we often had a long wait for the journey home . Luckily my lady, Frances , loved the waiting area that incorporated a cafe with tv , magazines etc , all the ambulance personnel and the staff on the unit were lovely and so she thought of it as a day out 😃 Of course this was all pre COVID (about 8 years ago ) it might not be as efficient or pleasant now but I’d like to think it is

Delamere profile image
Delamere in reply to katieoxo60

Thankyou l travel because l live in Scotland and my consultant is based in main hospital. Now sorted and they are keeping me in showing the other side of our NHS which is wonderful and caring x

Good to hear you got there and you obviously needed to be there ! I hope your stay is as pleasant as possible and the treatment you receive improves your condition. I’m guessing your chocolates will have to wait until you get home but at least you will get transport back if necessary 😃 Best wishes & hugs , hope you’re home soon xx

CDPO16 profile image
CDPO16 in reply to Delamere

I hope that you will get the care you need now but not have to stay in too long. Best wishes xx

katieoxo60 profile image
katieoxo60 in reply to Delamere

I have family in Scotland myself so am aware of the long treks to main hospitals Delamere. Glad to hear you got there and maybe now you are in you get a result that was well worth the wait and travel inconvenience. Every Best wish for a speedy return to home soon , take care xx

Delamere profile image
Delamere in reply to katieoxo60

Thankyou it was definitely worth the effort l have never felt so well cared for x

O dear love I've read your post in disbelief to the way you have been treated so cold and callus my heart goes out to you . What a horrible experience for you trouble is we are so vunerable to outside sources and it's impossible to take them to task when they let us down . I do hope you managed to get alternative transport but I know this isn't easy or affordable for a 50 mile journey and to have to cancel is sole destroying as appointments are like gold dust . I just don't know what else to say Im shocked take care love hope you managed to sort something xxx

Delamere profile image
Delamere in reply to ProudYorky

Thankyou so much.Managed to get sorted and hospital have decided to keep me in xx

ProudYorky profile image
ProudYorky in reply to Delamere

It's a good job you managed to get there hope your back home soon take care love x

How frustrating for you Delamere, this sort of thing seems to be happening more and more. I do hope you got to your appointment and it went well. Could you find a nearer hospital for future appointments? It seems a long way to go x

This is truly pathetic. Please contact your MP and report this, as they seem to be a law unto themselves, with absolutely no consequences.

Oh, I hope that your new plans come off and that you have a good appointment. Your resilience is amazing. From the timing of some of your replies you haven’t had a lot of sleep so I hope that you catch up. Take care and I don’t think’ wuss’ describes you. Grace

Terrible thing to have happened, unacceptable and definitely no reason you should feel “a wuss” ! Nothing surprises me at the moment , I’m absolutely amazed at the lack of empathy , albeit due to a system and individuals just being unable to cope . For vulnerable people this is terrifying as we always thought the NHS would look after us, it was our protective blanket , always there to care for us but now sadly , and shockingly it’s no longer the service it was two years ago and we just can’t rely on it 100% I do hope you managed to get to your appointment and that it went well and this evening finds you relaxed ,enjoying your chocolates and able to put the awful experience behind you Sending hugs 🥰🥰 love Val xx

One lesson I have learned from covid is never to expect to be getting anything as to save myself from upset and disappointment.

Same , acceptance is a wonderful thing and I’ve accepted that we’re now living in a very different world than we were two years ago ☹️

Lesson is in all this is that circumstances can change at the drop of a hat at any time for all of us.

Last weekend I stayed in a b and b and had said to the landlady there about lessons I have learned through covid like not taking anything for granted again and how I had decided last weekend I wasnt going to expect anything and just keep things simple and she said she will take my advice and do that as from this week onwards she has shut the b and b as she hasn't been very well as she is chronically ill and was one of the shielders.

Sunday lunchtime we had booked lunch out at a French bistro and they didn't have any Sunday roasts and one of my friends had said that was no problem as he also has learned not to expect anything either same as myself keeping things simple and we got told by his parents how they are extremely proud of us for our gracious and understanding behaviour over the Sunday lunch!

We decided on French items anyway which was better than a roast!

I remember back in 2009 when there were those whispers about swine flu and I was working in Caerphilly as the time and a colleague there had booked to go to Mexico and was worried about going or not so I had said to her about putting in some alternative plans just in case Mexico fell through and then rearrange for Mexico for another time and she had cried saying Her heart was set on Mexico and I had comforted her saying about some of my disappointments and how I had overcome them and how she didn't have to take my advice if she didn't want to.

With us pandemic or no pandemic delays, cancellations, changes and postponements to planned events were things we accepted as facts of life.

The line manager had said to listen to my advice of alternative things to fall back on!

She did go to Mexico after though.

I could easily have been unkind and had said about how in life you don't get everything you want on every occasion but didn't as when someone's upset you sympathise with them!

Brilliant attitude 👍😊

I really hope you have been able to keep your appointment.

You were badly let down by hospital transport and I completely understand why you were so upset and angry.

Unfortunately, as others have said, things can be difficult on the front line these days. A while ago we waited in a 5 minute queue to get through to 999 at 3.00 am. Once spoken to we were told there were no ambulances available for 1 1/2 hours. At the point of phoning, my husband thought I may be having a heart attack. Fortunately, by the time we actually got to speak to someone the urgency had passed and my husband was able to take me to hospital himself. However, if it really had been a heart attack, I may not have been here now!

Services are really stretched - but that's no reason to leave you without transport at the last minute and I agree with others that you should follow this up with a complaint.

If you to your appointment, I hope you had a good outcome.

xx Moy

Have no friends or neighbours to give you a lift !!

Delamere profile image
Delamere in reply to Jahrazz

Neighbours are away and too short notice for friends who are working

Please, please God let Delamere get to her appointment today and may the result be fruitful.🙏 xxx

Delamere profile image
Delamere in reply to Alberta56

Your prayers have been answered ! I am there thankyou so much x

CDPO16 profile image
CDPO16 in reply to Delamere

So pleased to see this. Hope it's a good consultation for you xx

Alberta56 profile image
Alberta56 in reply to Delamere

Nice of God to listen to an atheist. 🥰🥰🥰Hope you et some answers.

Wow that’s a pretty poor show especially in your vulnerable condition. I hope they reschedule you asap and sort everything out for you. Life can be hard enough without that on top

You can get a TAXI and claim every penny back. I can give you a phone number for to get forms if you PM me... I have not had rouble thus far with patient transport but some when to phone for it are really rude... I have not been let down to be honest but if I was you can claim the money back for the fair in many circumstances.. Good luck, I have tussled with these people.

Delamere profile image
Delamere in reply to Ern007

Thankyou so much for your advice

That’s appalling! You are not a wuss! Did you manage to get different transport?

Delamere profile image
Delamere in reply to helenlw7

My wonderful home oxygen people arrived with tanks for me and my poor husband strapped his poorly knee up and with the help of a stick managed to get himself into car and take me in x

helenlw7 profile image
helenlw7 in reply to Delamere

That’s brilliant. I hope your appointment went ok.

MMaud profile image
MMaud in reply to Delamere

Your husband is a hero, even if he maybe doesn't wear his pants on the outside!

So glad you got there safely.

Delamere profile image
Delamere in reply to MMaud

So very true x

I hope uv managed to sort lift to yr appointment xxx

Delamere profile image
Delamere in reply to Patk1

Thank you l did

I think what you have experienced is awful and hope you have managed to get your appointment. I have just booked an ambulance to take me for a colonoscopy next Tuesday and I was surprised to find that I am obviously on a list of people who need one. I go to the hospice every other week by ambulance because I am on oxygen 24/7 like you, and when I rang this morning they just took my NHS number and address and told me to be ready two hours before the appointment. Like you the hospital is 30 miles away. This is in SE Wales. My nearest hospital is in England, and I am not sure whether I can get transport there as I have a Welsh postcode. It seems to me that if they can make life difficult they will. If I call an emergency ambulance they automatically take me to the English hospital!

Sorry to hear bad organisation. Live in france and health service much better here. My wife had visit to consultant in toulouse, 2 hours drive for us, and told AOK, as OK as bronchiectasis is, and next appointment in 9 months. 2 days later received letter with new appointment details. That is what is called organisation. Granted we pay a lot more than in UK for our "NHS". Employees pay 22% contributions plus complementary insurance. Even though we are retired still pay £130 per month for comp health insurance. UK needs to pay more into the club.

Hope that when you do see consultant he has some good news for you.

Take care, stay away from Covid,

Chris.

I feel for you - that’s so worrying and upsetting . Did you manage to get there for your appointment? Our car broke down just before a hospital appt - luckily I found a taxi who would take us there and wait to bring us home - didn’t charge waiting time bless him.

But had we not found him it would have been up to a year to get a new appointment.

This is the big worry - all medical facilities overstretched, really long waits for appointments, and really bad admin and communications.

Do hope you are ok xxx

I did thankyou. What a wonderful man your taxi driver was. We have met some very kind people through these strange times. Best wishes to you

Communication was rubbish in the health service before the pandemic hit and it's gone from bad to worse!

I would be bloody angry as well life is hard enough already with our illness take care Delamere

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