My husband has had COPD for 6 years but for the last two he has been getting steadily worse. He has been in hospital twice this year with pneumonia but the problem is we don't think we are getting the right support from our GP. He has given him hundreds of steroids and antibiotics this year (we did not know he had to carry a blue card around with him) he has not been given bone protecting tablets either, we found this out by going on the web.
We found out he is entitled to a community care matron, again by going on the web.
We have had to buy a wheelchair, back-rest, grab handles for the bath, seat for the bath-room, urinals, trolley with wheels which he cannot use due to poor walking ability, and a walking stick.
The GP referred him to the specialist, but after 6 weeks we had heard nothing then found out the doctor had forgotten to do it, by that time my husband was again in hospital with pneumonia. He is now awaiting appointments, for bone checks due to the steroids, heart scan, oxygen therapy, adrenal gland checks. When we had not heard about these appointments we rang the hospital and was told the registrar had not yet signed the letters (3 weeks after the appointment).
We cannot get attendance allowance because my husband is not incontinent, I have re-applied three times and keep getting turned down I have lost 2 stone in weight in 9 weeks, due to the stress. Have not had a good nights sleep in months.
We have been refused a Blue Disability badge on the grounds he is not ill enough so requested he be seen by a medical person and not a paper chaser.
All in all we feel totally alone, I am 70 years of age and if we do not get any help soon it will kill me., then my husband will have to go in a home.
Oh poor you ,you are not alone ,contract age concern and the lung foundtion and tell them that you are not coping they will be able to help .take care Jackie
Sweetthing, please phone the BLF helpline who can advise you on all the points raised in your post. Please look after yourself and I am hoping that very soon you can access all the help you need for yourself in helping to look after your husband.
So sorry for all the difficulties your are experiencing.
this all sounds terrible, ring blf helpline and go to age uk. We went to age uk where the lady there helped us fill in the forms and we got attendance allowance and a blue badge without much trouble. The help is out there fight for your rights. In all the hospitals there are signs which say, its your health you are entitled to ask questions. hope things improve.
amagran, Thank you so very, very much for your reply, I emailed the Lung Foundation quite a while ago about benefits etc. when my husband started getting worse and I received an email stating that the person who deals with this is no longer with them. My husband was then in hospital twice for pneumonia so I took it into my own hands to try and get Attendance allowance and a blue badge for which we were turned down. I am 70 years old and waiting to see a specialist myself for a cough I have had 8 months and apart from antibiotics it has not improved, so you can understand how absolutely wretched I feel, it is the ill looking after the ill with no help whatsoever from anyone. I, am now , this very minute, going to ring the Lung Foundation and see what they can do for us. I don't mind having to pay for the things my husband needs as we would have to wait months for a wheelchair. It has taken 2 weeks to get someone to come out to measure him for a walking stick. thank you once again, I will let you know what they say. xxxxx
So sorry you and hubby are not well and struggling. i hope your appointment come through soon ....if not go back to GP. With regards to DLA / Attendance Allowance, go to disability rights, they will fight on your behalf. Please keep coming on website, there's always someone to listen and support. Take care of each other. Marilyn xx
Contact your local council as well, They have things like Community (Social) Care Services who can come and make an assessment of what aids you may need. They may also be able to help or advise on the blue badge situation. It's taken my council 10 months to arrange for someone to come and see me, but they can prioritise I guess.
It may also be worthwhile finding your local NHS Primary Care Trust and see what they can do for you - check at nhs.uk/NHSEngland/thenhs/ab...
Let us all know how you get on as it appears to be very distressing for you and there should be systems in place to provide support.
Thank you, I rang the Blf who told me to ring Age Concern who gave me another number, I rang them but there was no-one there to speak to at the moment., but unfortunately my husband was rushed into hospital again last night with pneumonia.
The attendance Allowance people told me that my husband did not need 24/7 care and that he just lacked confidence. If I had not been with him yesterday afternoon he would have died.
I am at my wits end, these non-medical people telling me he is not ill enough for attendance allowance when I am with him 24/7. I have not left the house for 8 months unless it is hospital visiting or gp then we have to pay for taxis. This money would help with all this, we have bought a wheelchair £500, bath grab rails, seat for bathroom, backrest, walking stick, walking trolley, urinals, chemical toilet. Because we have a bit of savings we are not eliglble for free help, we only have our state pension and kept the money in the bank for a rainy day, now that day has come and it is all going on medical equipment, if we had spent it all we would have got everything going. They said I could get help from Social Services etc. but I would have to pay.
We have never ever been on benefits of any kind, we have always worked..
I am absolutely sick to the back teeth, I am 70 years old and the stress is killing me.
Bless you and hope that by the time you read this you will have had some much needed help. You should be entitled to Attendance allowance or carers allowance and a blue badge by the sound of it. Just how bad does someone need to be? Some G.P.'s do not fully understand what they are dealing with so try and make sure yours does. Is there anyone who can help you i.e. family member, friend, neighbour? as it is sometimes good to have another person at your side. I am cross that your GP did not discuss osteoporosis with you as this happened to my husband too but that was 20 years ago. I had hoped things would have moved on a bit by now. Anyway, good luck to you and hope you have found this site as helpful as I have. sassy 59 xxxxxxxx
I am still no further on, I have rung the BLF who told me to ring Age Concern who told me to ring Age UK,, I am stressed out as it is without having to ring different numbers and having to hold on for 15 minutes until someone answers the phone.
The GP gave my husband antibiotics and said he had a chest infection, three hours later we had to call a blue light ambulance he had pneumonia.
When my hubby comes out of hospital I will get stuck in again. Gp's are useless, they are jack of all illnesses but master of none. I don't think a COPD patient should be under their control as they know nothing of what the patient is going through, they don't have the time to spend discussing different medications etc.
Thank you for your kind remarks they are very much appreciated.
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