I care for my mum who has copd, who has been in hospital twice in the last two months with exacerbations. The last time she was admitted, she acquired pneumonia from the ward and stayed in there for two weeks, on oxygen most of the time.
She was first diagnosed two and a half years ago after another bout of pneumonia.
Since that first diagnosis and apart from being an in patient, she has never seen a consultant. Each out patient appointment she has had has been cancelled by the hospital, it has now been moved to 6th March, at this rate she will be dead by then as she is struggling again now. She has not even been assessed for home oxygen.
We don't know what stage she is but I suspect stage 4, but it just seems she is discharged each time and abandoned.
She can't even get dressed without taking a break because she is out of puff.
She has no appetite and no life, it seems she is wilting before my eyes and I am helpless to do anything.
Is this the standard of care we should expect and I am clearly unreasonable in expecting more?
Aaarrrrgggghhh, ok rant over
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Poppin
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To be honest Poppin, I think you need to have all this information to hand and speak to BLF helpline as it certainly sounds like you need some help here to find out what on earth is going on and get in place what needs to be in place to help your mum.
Hi Poppin, so sorry to hear about your mum. The answer here is NOOOO. This story is so familiar and have been through it myself, I have only once seen a consultant apart from when in hospital. However I do have a good respiratory nurse at the gp, and a phone number for the specialist nurses at the hospital. You need to assert your right to answers and treatment, or at least explanations. Please ring the BLF helpline and speak to a nurse, she will put you on the right path.Knowledge is everything with this desease, and if the powers that be know that you are clued up, then you are likely to get better treatment. I had to fight for a nebuliser, for oxygen etc etc. but I learned not to be fobbed off. Its all down to money, so you fight for your mum and get answers. Do expect more, and dont be afraid to ask for more.
Please call the Trafford Healthcare NHS Trust Patient Advice and Liaison Service (PALS) on 0161 746 2019 and have a chat with them. Tell them what's been going on and they should be able to help sort it out. (Apologies if I've got the area wrong)
Beware that a lot of organisations may not be able to talk to you due to patient confidentiality etc, for this reason you may like to look into having power of attorney on you'r Mum's affairs. It does not stop your Mum speaking for herself, but allows you to do things like this as you would have her legal consent.
You should expect better care than this for your mother.As her relative you could ask for an assessment of need as it is called. If she lives alone this ought to happen quite quickly. I would see her GP about this or local social services if she is a pensioner. If she is younger you need a disability assessment, again via social services. But she also needs her health problems addressed from how you speak , GP is first port of call for this but unfortunately this is up to her. Try persuading her for your peace of mind,good luck and best wishes.
I found myself ranting back it's so upsetting, of course you are not being unreasonable your Mum deserves the best and you are naturaly distressed seeing how she is not being cared for properly.
You can learn a lot from sites like this,there are lots of carers' here who could give you good advice and BLF are just a phone call away,they can send you very useful info.I wish I had been able to get advice for my Mum back in 1995, or if only I had known then what I know now..if I was you I would arrange through the GP to see a Consultant and get the ball rolling as regards to being suitable for oxygen therapy and further treatment. Let us know how you get on,all the very best to you and your Mum, Carol x
I'm not able to add anything to the comments the others have made Poppin, except to say that I agree with them all. I wish you success in your endeavour to ensure that your mum is receiving the best care possible, and pleases keep us all informed x
I sympathise with you. GP's are little help. But if you have a respiratory nurse she should be able to help and get your mum and oxygen assessment. I had the same problems. Was really struggling to breathe a lot of the time. Out of breath when dressing or bathing. I had a word with my respiratory nurse and she arranged an assessment after which I was put onto oxygen.
I was also in hospital twice. The first time they treated me for an infection and sent me home after three days. I was then admitted a couple of weeks later with pneumonia. Probably this was not spotted the first time and the treatment never fully got rid of it. That may have happened to your mum. I must add that before I was put onto oxygen I did think at one time my life was over. I felt like I was dying. After now having been on oxygen for six months I feel very much better and do not have the dying feeling anymore. It seems we have to push for our rights. Insist and shout from the highest tower if need be. Meantime give the BLF helpline a call and speak to one of their nurses. I am sure they will be able to help you.
I feel for you. I agree with the comments from other. The BLF help line is a good start, I used this quite recently and the nurse was really helpful, I also have the luxury of having access to the respiratory nurse linked to the consultant , this is because I go to follow up of the pulmonary exercise classes. I wish you the best of luck. Maybe after all the bad publicity they will change!
I feel so sorry for you - how awful. I agree with other people to start with the BLF and they could give you some practical advise. When my husband was very ill (he too has never seen a consultant and yet has been diagnosed for ten years) - he was taken into hospital and like your Mum just sent home and left. My sister told me that there was a specialist respiratory team in our area but he had to be referred by the Doctor. I couldnt speak to a Doctor so spoke to the Practise Nurse who immediately referred him. The nurse visited him at home, assessed him and then referred him to Pulmonary rehab and reassured him he was on the right meds. I have personally found that if you dont ask for help, it just is assumed you are coping. Good Luck and I hope that your Mum starts to recover soon. TAD xx
I beg to differ on the comment that your GP cannot help.Mine is the best thing since
sliced bread. She has helped get me to specialist's ,into Papworth and the new Addenbrookes.Has worked with me over more than ten years with meds,and only this
week within two days got me an appointment today at Papworth Hosp. again. Never
has she let me down,and is now sorting out op for Cataract. Always my first and only
Hope you do get some much needed help for your poor dear mum and thinking of you Poppin. Some great advice as usual on here and nice to see so many familiar names too. Take care. xxxxxxxxxxxxxxxx
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