pr, or twot

left home at 12, got home at 4.15, most of the time waiting for or on buses, cold, windy and wet. pr class for 1 hr, they wouldnt let me in so I dont know what happened except that he came out blue. When I aproached one of the nurses she said they were only trained in copd and when was the next appt with Dr *****, not the dr he sees. I asked if she thought Ishould ask for a flu jab, being his primary carer, he had his this morning, she didnt know,said if I found out would I let her know. if this is to be the pattern for the next 8 weeks, I ask myself is it worth it, the weather is gonna get worse and hanging outside in the wet n cold isnt gonna do him much good, let alone if he comes out blue. I feel so frustrated am on the verge of tears and feel I just want to lash out at someone am so upset. Am I being totally selfish here, not sure he'll go on his own, its 4 buses, and dont want him to, but as they wont let me in its a waste of time me being there. aaaaaaarrrrrrrrggggggggghhhhhhhhhhhh

20 Replies

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  • maybe I had got it into my head about how miraculous it was gonna be and change our lives around, and now I just feel totally gutted.

  • Do they have patient transport did mine at the hospital and patient transport took me door to door lot of waiting but not out in the cold. Takes a few weeks before you see anything with COPD do not know what it is like with IPF have not met anyone with that and it seems the same course whatever you have, shame they would not let you in carers sat at the back when we were having our talks so they could remember anything we had missed.

    Try to find a way of getting the most from the course not being tired out getting there (taxi/minicab / community transport) worth the effort if it does not make you worse.

  • a footnote, his sats were 81 by the time he got home, his oxygen tank only lasts just over 2 1/2 hours. There was no oxygen there as the course is done in a community centre not a hosp, the only props were chairs to walk round, yellow stretchy tapes to pull and one little cycle that fits on the feet.

  • You don't say where the PR sessions are, I guess the HRI ? Try calling 0800 013 0018, it's the Patient Advice & Complaints Service for Calderdale & Huddersfield NHS Foundation Trust.

    The other option, still at at the hospital trust, is the Patient Advice & Liaison Service (PALS) team, 01484 342128 or email pals@cht.nhs.uk

    Explain the situation, the hassle of buses, bad weather, see if they can organise some transport ? Richard should not be making his own way there, that's for certain. He will need help to get back home after a PR session.

    I'd hassle your own GP surgery about the flu jab.

  • I am going to ring the resp dept tomorrow gordon, thing is the courses are held in a community centre at the opposite side of town 2 buses away, and we had to wait half an hour after outside the comm centre for the ist bus then wait for another in town. He is now adamant that he wont go again, so will ring the resp dept tom and see what happens, I have just had a good cry and still dont feel any better.

  • I said I was gonna call a taxi and he refused by the way, cos hes so stubborn

  • If the PR course is run by the NHS then there's a good chance they can sort out transport, given the circumstances. By all means cry down the phone at them too!

    Here in Doncaster the PR courses are at the hospital and they even have their own yellow cabs! OK, so you have to book them in advance, but they're there and are free, if you're attending an appointment and have good reason to request one. They're not there for anyone to book of course.

  • thanks gordon, I am going to ring either or both of thse numbers , depending if I get any joy from the first, today and will keep you posted, had an awful night worrying, got enough reasons to be sleepless without any more, again, thanks. xx

  • Gordon, rang the liaison number which is now complaints, they have combined the numbers and services, so its just the 01484 number now, have rung with my concerns and they are gonna get back to me. they said it will be the respitory dept that get back to me, sometime today. x

  • Let's hope they sort something out and don't just try and fob you off. Seems strange that they've combined some of the services like that, but nothing surprises me these days.

  • having the flu jab tomorrow, considering I have bad reactions to, aspirin, ibuprofen, codeine, statins, the pill, hrt, can't take any of these, even had a reaction to a tetanus jab and couldnt have the whole set of 3, heres hoping I can have a flu jab without my arm looking like an elephants leg.

  • Hi Amagran,

    Sorry you have been so badly let down - unfortunately it is all too common though. My own experience mirrors yours - long bus journeys in January, out all day only to attend a hospital PR group where not one nurse or physio even had a pulse ox. Even with copd, nurses often know less about our condition than we do. And anyone running a PR group should be a Respiratory Nurse - not a 'copd nurse'. It is scary, and it is why we have to educate ourselves about our individual condition, our drugs and, in particular, our oxygen status and how to keep ourselves at the right levels. Exercise is great if we are properly oxygenated, but it does more harm than good if our sats are dropping to the point of going blue - and just about any nurse should know that.

    As regards the flu jab, I believe carers are generally advised to have it - as is everyone over 65. It can't protect anyone 100% but it makes catching it far less likely, and as Richards carer you need to protect yourself as best you can against being poorly and 'out of action' for Richards sake as well as your own. Both my son and daughter have it - and no, they're not 65 yet ;) That the nurse couldn't even advise you about that is quite alarming :(

    Amagran, I hope that by the time you read this you and Richard are both feeling a bit better, take care , P x (PS check your PM's)

  • Hi sorry you have had such a hard time, i use to have flu jab as a carer now ofcourse i have it due to copd. When i went to pr i didnt have anyone to go with me but we were constantly told if we had somone to go with us they were very welcome, so dont get why you cant?? Doesnt make sense not to allow carers in especially considering the amount of buses you have to get and alot of us have anxiety as well! I would ask the manager of the copd team.

    Good luck and wish you well xx

  • Amagran this is not good, I would be investigating the patient transport service as has been mentioned, Richard shouldn't be out in bad weather waiting for buses and running out of oxygen. I would also do as suggested and call the patient complaints and advice service. I do not understand why you were not permitted, its your right to support your husband as his carer. On the PR I attended spouses were permitted and of course it was helpful to them as well as the patients. The educational side alone is of great importance.

    I can understand how angry you must be. I wouldn't give up and would communicate every down side of your experience today for you and for Richard. PALS, Community Matron, GP, Consultant. OT services team, every one involved with your husbands healthcare.

    I hope you get better services to help Richard and help you support him.

    All good wishes Zoee

  • Oh dear amagran. I came on here specifically to ask about Richard's first PR and expected smiles, humour and looking forward to more. What an appalling set up. I would take Gordon's advice and contact the advice service but also make a complaint if you need to. As for transport, I hope they can sort it but I know there was none available when I did my course, in a church hall of all places. You must feel totally let down. I'm not surprised Richard said he was not going again. The problem is, the PR will certainly do Richard good, but only if it is delivered properly.

    I recently had a visit from a physiotherapist and we discussed exercise and oxygen. She advised on exercise and was very knowledgeable but openly admitted she knew very little about oxygen. However, she said if she needed to she could always contact the respiratory nurses for advice. The person running Richard's course obviously needs to do that. And they can take oxygen cylinders along - they did for me because I had to turn my oxy up high for exercise and could not carry more than one cylinder along with me. They had a massive tank on wheels with a long lead.

    I also cannot understand why you can't attend with him. There were about 7 on my last course (4 men and 3 women) and 3 of the men had wives in attendance.

    Start banging some heads together. Good luck. xx

  • Hi can't understand why they won't let you in they let Graham think it is helpful having someone you know there, you know his limits. Would ask about patient transport I could have used it, mine was to a hospital mind. He needs support and they should supply 02 for you what L is he on ambulatory? Does it need an increase? So sorry you have been through this can they not offer you to have someone to the house they mentioned this to me? Val x

  • Hi Amagran

    What a terrible experience for you both! We have all been encouraging you and others to go because we had found it so helpful. True mine was held in the gym at the hospital and run by specialist respitory physios. They positively encouraged carers/partners to go to the education elements and they were often there in the gym as we exercised. Certainly joined in the tea and biscuits at the end. The physios always asked if I wanted to use their oxygen to save my own for travel ( didn't need to since we had gone by car) but others did. I will admit they were not as knowledgable about my PF as they were about COPD but they listened to how I was coping and set my challenge accordingly. The senior physio made an effort to get better informed about PF during my course there.

    I agree with what the others have said - you need to complain about the quality of the course and get help with transport. The whole idea of the NHS spending money on these courses is to improve our quality of life and keep us out of hospital! This experience will have the opposite effect if these conditions carry on!!

    I do feel for you both and hope you can get something sorted. Perhaps GP/consultant, whoever referred you would have some influence. This useless course is coming out of someone's precious budget.

    Maggie

  • The first thought was has he got a conserver? My oxygen tank would last for just under two hours, but I have a conserver that pulses it, a shot with each breath so will last 3 times as long. If not have a word with your oxygen nurse.

    The second part is that this is disgraceful that you should be left out in the cold. This is not acceptable by any standards. I can understand your feelings and to be honest am at a loss for words at your treatment. This is saying that they have no real idea of what it is to suffer serious lung illness, and that they need retraining. I am horrified by reading some of the experiences in PR. This comes down to more training being needed for those that are running these courses.

  • Sorry to hear that you and Richard had such a bad time of things at the PR session. Not had any experience of PR with Pete but would have been very unhappy myself if he had been treated like that. You should definitely have been able to go in with him as that is helpful and yes, you should have the flu jab for free as you are a carer. In our leaflet from the health centre it does recommend that carers of people with chronic health problems do have the flu jab. Pete and I have ours on the 13th so badger someone and get it done. Men can be so stubborn can't they! Finding out if there is transport available to you directly would be a good thing. Good luck to you both and take care. xx

  • what a terrible experience. gordon, as usual excellent advice.amagram, enquire about transport. why were'nt you allowed in. i know the p.r. i attended welcomed partners, carers, one lady even brought her grandson. what a horrible experience for you both. try and have the strength to get some help. meanwhile take care of each other. I would wish you luck, but actually its nothing to do with luck--its your right to get help. sending a hug x