Lung Transplant appointment 28/11/23 Cancellled for the 2nd time due to Failure of Patient Transport

[Sara_2611]

I was supposed to be having my lung transplant assessment today (28/11) at 2.45 but as before the NWAS didnt turn up. The manager at the Transplant section phoned & told me if I didnt come to the hospital they wouldn't see me. We had to explain we were waiting for the ambulance - he then cancelled the appointment & said theyd cancelled the appointment & when they turned up at 3pm we had to send them away & explain why

This wouldve been an important day for me but because of their failure to deliver (ie an ambulance that was promised to us with Oxygen for this appointment (28/11) in time to be able to have my appointment (which we had booked a good while ago

It was bad enough they did it the first time round but to cancel it a second because the ambulance pitched up after my appointment time

I am distraught & furious with the NWAS as are my family. Now we finding ourselves questioning whether we trust the NWAS or not - probably not at the moment

Im also beginning to realise my specialist is right when she said i d never get through the assessment. Im not even getting near the hospital never mind the appointment

Mum has sent a very stern email to voice her views so we can only wait to see what feedback she gets

[sassy59]

That's beyond disappointing Sara and so frustrating. I hope your mum gets a reply to her email. Something needs to be done as that’s dreadful. Xxx

[horseygirl_0103 in reply to sassy59]

She will - shes written it quite harshly This is the 2nd time this has happened

[Yumz199725]

This is awful cant believe they have done this to you twice! Can you ask someone to drive you to the hospital appointment x

[horseygirl_0103 in reply to Yumz199725]

I wouldve gone by car with my dad but im on oxygen & have ambulatory &I have to have a high flow which means no matter how many tanks we bring they will use up very quickly which means there is a danger that they will all get used up while travelling I live in north manchester & wythenshawe is in south manchester & could take ages if the traffic is busy or wider traffic issues & stranded at the hospital with no oxygen to travel home with

[simplesprout in reply to horseygirl_0103]

I had my transplant at Wythenshawe 4 years ago and am regularly there. I had to cancell my initial interview on several occasions due to being in hospital with infections. They are all really chilled out in transplant out patients and the Jim Quick Ward, I'm sure they will understand. Best of luck going forward.

[Yumz199725 in reply to horseygirl_0103]

Ahh this is awful, is there another hospital transport that you can call? X

[Hidden]

Your Mum needs to contact PALS and make a formal complaint. As usual, the department blamed the patient for a failure in the hospital's administration. This is a serious issue for your health and they have to be put on notice not to fail you again.

[horseygirl_0103 in reply to Hidden]

She did - She has the name of a PALS officer so im sure they ll get back to her

[Axolotl1 in reply to Hidden]

in my experience PALS have been a waste of space on more than one occasion. As an example: They were supposed to arrange an interpreter for my partially deafblind friend for her appointment at the Eye Hospital in Manchester. Twice they never turned up and when investigating, it transpired they never booked one. On the third appointment they sent a note taker instead of a BSL interpreter or deafblind manual interpreter. To cap it all the note taker just gave my friend the notes she had written in normal cursive writing; my friend has large print on blue paper because of her vision. Totally incompetent. This is just one example of a PALS let down. Yes, a complaint did go in but it didn’t come to anything. It may be different in other areas of the UK but it has happened too many times where PALS has let people down.

The idea of contacting a local councillor however is a good one and I’ve heard of positive results with this method.

[Hidden in reply to Axolotl1]

My experience of support from PALS was very different. They helped me through the process of complaint against a cardiologist who nearly killed me whilst inserting a pacemaker. There comes a point where their ability to help reaches its end point and now I am in the process of sueing the doctor and trust using a very good local solicitor who agreed to do it no win no fee. I think that your needs were probably beyond the capability of PALS but they should have told you so and suggested where to get the right help.

[Axolotl1 in reply to Hidden]

I’m really pleased that with such an important situation for you that PALS were so efficient. The process involved in your case would be far more complex than my friends though where it was just a case of PALS phoning the interpreter database all establishments have access to. (At one time you could choose your own freelance interpreter, but now you have to go through a set database that is there to protect the service user with a set of standards. The NHS is obliged to provide interpreters and not only that; make sure the interpreter is suitable for the patient. I.e. knows the medical terminology or/and the specific needs of the patient. I.e. Hands on signing; visual framing; deafblind manual and so on. As my friend was a regular patient at that time it was well documented of her needs. It ended up they my friend didn’t know what was said and had the indignity of waiting for a letter from the hospital to explain about the appointment. Even then she had to have the contents of the letter explained in her preferred way of communication. PALS are supposed to help alleviate the NHS staff but despite my friend’s needs wrote down in her records they failed to arrange a simple task because they ‘forgot’ on 2 occasions, and couldn’t even get it right for the correct type of communicator. It actually ended up causing the reception staff more work because of this.

[Hidden in reply to Axolotl1]

I agree with you that is bad. What never ceases to amaze and annoy me is how beaurocracy and inefficiency manage to prevent the implementation of services which are obligatory.

[Bevvy]

This is 100% unacceptable. Have you spoken to PALS at the hospital? I have found them extremely helpful in the past.

Otherwise is there any other way to travel to the hospital? Hospital transport is notoriously poor. Especially with pick up. Might have more success finding another mode of transport to get there and use hospital transport to go home……

[clematis5932 in reply to Bevvy]

Sorry Bevvy I really must pick you up on saying Hospital Transport is notoriously poor. I have used the service in Worcestershire for three years now from anywhere between 1 and 3 times a week. Only twice have they ever let me down and even then hospital let me go a few hours later than my appointment time. My crews always phone to all patients when they are close to picking you up, not just to me but everyone. When you first start using transport it is explained that you have to be ready two hours before your app time. Unless you can give a definite time of departure the dept you have been to will phone and tell them you are ready to be collected. I would be very angry with the transplant dept for not offering another appointment whilst on the phone to them. And for not being sympathetic to what had happened and tried to fit her in later in the day knowing the ambulance was there to go.

[Bevvy in reply to clematis5932]

Obviously we all comment on our personal experiences and certainly my experiences for both myself, family and friends is that hospital transport is poor.

Am pleased for you that your experience is different and you have found your transport experience to be positive.

[horseygirl_0103 in reply to Bevvy]

Mum has done a stern & harsh email & had the direct email of a person & their direct phone no . so thats where she went first .

I was just saying its too risky to go by car because i am on a high oxygen flow & my tanks will use up very quickly & there is a risk that no matter how many tanks I take that they will all empty quickly & have none left to be attached to while an oxygen port is found for me to attach to & none to travel home with

Going from experience travelling home by ambulance if you order one after your appointment you have to wait hours & hours

[Bevvy in reply to horseygirl_0103]

Just been thinking. Have you thought about contacting your MP and local councillor? Wouldn’t hurt to have someone else on your side……

[Stratos20]

So disappointed for you Sara. Crap service all round. I hope your Mum gets a positive response. Fingers crossed 🤞🏼 Best wishes, Diane

[horseygirl_0103 in reply to Stratos20]

Im sure she will Im beginning to think my specialist is right she said id never get through the assessment - I cant even get near the hsopital never mind the assessment

No wonder my view of the the NHS isnt 100% Theyve been in the media a lot for being in serious trouble & even the director came out on record to admit their failings Poor Service & bad Practice -whats happened to me is one such example

[clematis5932]

So sorry that you had to go through this disappointment with non of it being your fault.

[horseygirl_0103 in reply to clematis5932]

It begs the question now do i trust the NWAS (north west ambulance service) At the moment the answer is a great big NO

[BronchyBronwen]

You must absolutely listen to Littlepom and make a formal complaint (and back that up in writing) to PALs. Nothing will happen otherwise. So sorry, as this is last thing you need.

[horseygirl_0103 in reply to BronchyBronwen]

My mum has done that -she has the direct name ,phone no email address of the guy she spoke to the last time it happened & also put it in writing & copied me in her emails so I can see what shes written . I also sent an email to my specialists secretary to ask her to pass on my email so she ll get back to me

[BronchyBronwen in reply to horseygirl_0103]

That's good, but hope it's also gone to PALS, really important as they have specific official responsibility. But all sounds good. Best of luck. I do feel for you. x

[horseygirl_0103 in reply to BronchyBronwen]

yes it has mum showed me & copied me in

[BronchyBronwen in reply to horseygirl_0103]

Great stuff! You have a lot of us rooting for you. I have all my fingers and toes crossed

for a good result for you. xx

[horseygirl_0103 in reply to BronchyBronwen]

thanks bronwen

[DannyQ]

I really am gutted for you Sara, I hope you get some good news soon. I can't imagine how you felt yesterday keep fighting and one day you'll get the appointment so you can move forward with your life

[horseygirl_0103 in reply to DannyQ]

well so do i but not holding up much at the moment

[DannyQ in reply to horseygirl_0103]

I'm definitely rooting for you and I will be adding you to my prayers.They cant keep letting you down like they have

[BrigidsFire]

That’s terrible.

As usual it’s poor service from an over funded and poorly managed NHS. Perhaps if they took out a few managers and started actually caring for patients they’d get results.

I’m so sorry this has happened to you. Definitely take the PALS route. You don’t deserve to be the victim of a bad management system, which it what it seems to be the problem.

[horseygirl_0103 in reply to BrigidsFire]

Yes its terrible - it jsut reaffirms my opinion . Poor Service & bad practice My case in a perfect example

A few years ago a hospital was in serious trouble which in turn gave the director no choice but to come out on record in the public/media to admit their failures -ie admit poor service & bad practice

Theres been many hospitals in trouble Wythensawe was one of many under investigation-I think it was for their caring services (or lack of it)

[Numptybrain]

I really feel for you and what your mother must be going through. To be let down like this. You definitely need answers through PALS it’s not on. This is your life and you have to fight now even though you shouldn’t have to but unfortunately this is the NHS they do make mistakes like everyone else.

Good luck

Wendy x

[horseygirl_0103 in reply to Numptybrain]

Yes my mum has put in a harsh complaint Ive sent an email to my specialist to advise her of this via her secretary

[sunshineday]

So sorry to hear the poor service from your local hospital transport service and it's serious implications for you. I worked in the NHS for 30+ years including dealing with complaints for 15 years. Write to the Chief Executive, he is responsible for the smooth running of the service and it's important he knows where things are going wrong. It's probably all changed since I was working but the hospital transport was run by a different NHS Trust to direct patient care so it's worth checking out first. In any event if two trusts are involved send a copy of your complaint to the other trust Chief Executive as they both need to know what has happened, especially as it's happened twice. It must also complicate things because you need access to oxygen which limits which transport you can use. Thinking of you and I do hope something gets sorted quickly for you. 🙏

[horseygirl_0103 in reply to sunshineday]

Hi

Oh yes I ll mention this to mum

[horseygirl_0103 in reply to sunshineday]

ive shown your message to my mum if you dont mind then she can find out these details

[sunshineday in reply to horseygirl_0103]

That's fine horseygirl, just hope it helps. Hopefully through all the helpful comments through this lovely community you'll get apologies and most importantly a successful hospital transport trip and appointment. Best wishes 🤞🙏

[horseygirl_0103 in reply to sunshineday]

I discussed with with my mum & mentioned your suggestion & she said it was a good idea so she ll find out his/her email (or phone no) to complain

[sunshineday in reply to horseygirl_0103]

Hope you have some success. Hopefully if you type in the Trust name on your search engine it should come up with the Trust address and relevant chief executive contact information. Although I was the complaints manager and did the liaison with complainants and service involved every reply I drafted had to be signed by the Chief executive. He was great and went through it with a fine tooth comb to ensure every aspect of the complaint had been fully investigated and responded to. We all knew that we really had to be thorough in finding out why something had gone wrong and how we would ensure it didn't happen again. Keeping fingers crossed you. xx

[horseygirl_0103 in reply to sunshineday]

Thank you they owe us a decent reason at least

[sunshineday in reply to horseygirl_0103]

They certainly do! I do hope that you get a really successful outcome from NWAS apologising for the delay and giving the reason for it, plus assurances that because of the poor service you have had twice and the detrimental impact it has had on your health what steps will be taken to ensure it doesn't happen again. In our area the ambulance service had a list of drivers they could call on at short notice (the hospital car service drivers were volunteers, my husband was one and was called out on occasions at times he was not due to work if there were problems). Good luck. xx

[watergazer]

That’s frustrating. No wonder you’re angry. X

[horseygirl_0103 in reply to watergazer]

Absolutely but i think furious covers it more

[horseygirl_0103 in reply to watergazer]

Yes my family are understandably furious as well /My specialist has been notified too

[Alberta56]

So sorry they're messing you about. I hope this can be resolved quickly. My extremely limited knowledge of hospital transport is that the staff are willing, but that ambulances are usually late because there are not enough of them. Good luck to your mum in pursuing her complaint.

[horseygirl_0103 in reply to Alberta56]

cheers alberta

[jackdup]

that really is unacceptable in my opinion.

[horseygirl_0103 in reply to jackdup]

i agree and then some

[Patk1]

Very disappointing for U.I don't know about where u live but " traffic calming measures" in our local towns are dreadful.15min drives takes nr 2 hrs.more traffic on roads,turning dual carriageways into single lanes = long queues oftraffic EVERYWHERE.i wonder of its involved in the delay?

[horseygirl_0103 in reply to Patk1]

dont know

[Stewie_1968]

Bloody awful , hope you rearranged the appointmentRegards

Stewie

[horseygirl_0103 in reply to Stewie_1968]

they will write to me with one but we re going to have a rethink about transport to make sure i have this appointment. My ambualtory oxygen tanks will run out ver quickly as Im on a high doese of oxygen My mum is going to look into seeing whether my large emergency tanks are safe to have in the car

if they say no then god knows whats going to happen

[Injecter1]

Oh Sara that’s terrible, I’ve been through the process at Wythenshawe and you just want to get seen asap. I live 5 mins from the hospital and I take 3-4 cylinders with me for an appointment, It’s a nightmare trying to go anywhere when you’re on high flow oxygen and the fear of running out is awful. Problem is they don’t give you enough cylinders in the first place. I think most people have 8 (I’ve got 10). Who supplies your oxygen, I ask because maybe you could speak to the company and ask if they could let you swop empty cylinders at Wythenshawe for your return journey home? You sound like like a young person, this is a lot to go through for you. Good Luck with your assessment x

[horseygirl_0103]

Im not that young lol I turned 56 on sunday . My asessment never happened no thanks to the lack of appearance of north west ambulance service because of them wythenshawe hospital cancelled my appointment