How to find out if my husband's condition has got worse and how I can help him? We keep hitting a wall and are not getting answers.

[mazbee]

I am a carer for my husband Graham who is in stage 3 COPD.

He had a spirometry test done by our local hospital back in December, he also did the same test for "The Bliss Co-hort Study"

Normally we see his hospital consultant every six months, but by February no appointment had arrived for him to be seen. I phoned the consultants secretary to inquire about his late appointment. She told me that due to hospital department closures at Stafford and other regional hospitals, their waiting list and times had vastly increased, we would be sent an appointment in a few months time.

In the meantime both Graham and myself are noticing he is having problems with his breathing, especially when exercising, walking and talking, we felt it was getting worse since his last chest infection in March 2013.

So I contacted our GP to book Graham an appointment to get this problem sorted out.

The COPD Nurse refused to do a spirometry test because both Bliss and the hospital had both done one, but they had not got any results from both tests..........

Once again I phoned the hospital to try to get an appointment with no joy.

So I booked him in with another Dr in the practice, who once again referred us to the COPD nurse, who once again refused to do the test as he had already done two in December, despite not having any results from both tests!!

I phoned the hospital again and got through to appointments, and finally managed to get an appointment for 10th July.

In the meantime, I wrote a letter of complaint to the GP's surgery manager, explaining our frustration and anger that his problem was not being attended too.

Within a couple of weeks another spirometry test was organised, the results of the two previous tests were chased up, but they still could not access the hospitals test results.

We were told that the test showed he was stable with the results from the test the year before. But we were and are more concerned with his condition now.

When we finally attended the appointment last week Graham was exhibiting signs of a TIA, numbness and weakness all down his right hand side. Dribbling from the mouth on the right hand side, a slight facial droop on his right hand side, although he could lift both arms above his head. He was sent straight to hospital who kept him in overnight.

I said I would bring in his medication for all his ailment including COPD, but was told not to bother as they had his prescription and would give him the medication he required from their pharmacy.

They only gave him 4 aspirin and a statin!!! no other medication at all!!!!

He went back to the Dr's last Friday were he was attending a Health MOT.

I expressed my concern for his COPD problems, but they say they cannot do any tests because of the TIA.....

Then today we receive a letter from the hospital saying his appointment with his COPD consultant has been put back to 4th September. We have not seen his consultant since June 2012.

Graham feels the he has been abandoned by the medical profession , and is now refusing to go back and try again to get his problem sorted out.

I am at my wits end!!!

How can I get some help for what we consider is a worsening of his condition?

[scrobbitty]

Oh my goodness, you have been given the run around. Quite disgraceful! It's too late now, but I would suggest ringing the BLF Helpline tomorrow for their advice. I am sure they can point you in the right direction. Their number is 03000 030 555. Best of luck and let us know how you get on. xx

[Hidden]

Thats A Disgrace Shocking .... Only Thing I Can Suggest If GP Is Being A Clown Go A&E Or Call Out Of Hours Doc Up

Or As Scrobbitty Says Phone BLF .... Is Not On A Would Lodge Complaint With Local NHS Commissioning Group Tell Them Your Husbands Care Is Falling Well Short

But Thats Not Giving Him Instant Relief ... So I Would Get Out Of Hours GP Out

Hope That Helps And So Sorry About You Predicament Wishing You All The Best

[mazbee]

Thank you both for replying, I will ring the BLF helpline tomorrow.

I have an appointment for myself at the Dr's tomorrow, So I am going to state how my mental health is being affected by all of these problems.

[Hidden in reply to mazbee]

Call Out Of Hours Doc Up ... And Defo See Your Doc Tomorrow ... Hope It Works Out Well .... Take Care

[Gidge]

I found that a letter to my husband's consultant expressing my concerns did the trick - even had a phone call from the consultant!

[Hidden]

Hi mazbee, this is awful and should not be happening, the trouble is your husband needs to be regularly monitored, you could go to PALS through the hospital and explain how your husband is feeling now and how you are very worried about his health the lack of health care and see if something can't be sorted out.

Another way to seek help for your husband is ask your local breathe easy for information on the community matron who visits people in their own home when the condition is worsening, the breathe easy may have a community matron attached to the breathe easy group and you can get more advice about this through the group. Also your GP can advise about accessing the community matron, community physio team and of course able to chase up your appointment with a consultant.

The BLf helpline will be able to advise more about this situation also.

Hope you get something settled and sorted soon.

Good wishes BC x

[Hidden]

bloody shambles from start to finish I feel for u I really do/id have said every swear word going bloudy pen pushers wat chat down there nose make me worse/ring blf up/id got hold of my mp id go to his bldy house.must think we are 2yr old kids sum of them .go hear /oh u have wait/oh its in the post/or long waiting list bla bloudy bla/.rollock them ,once the phone gone down we are forgotten/u ring again its can I help u/wats ur name address d,o,b,wats ur enquiry jeuz give me strenthg.they try the patience of a saint .take care both

[mazbee]

Thank you all for your replies.

I did ring the BLF today, and they advised me to go back to the Dr's and make a double appointment for my husband, and to have him checked for other problems besides his COPD, just in case his other medical problems may be affecting his breathing.

I contacted the Dr's practice, but they want us to wait until his blood and urine results come back from the Well Man's Appointment he attended last week.

Looks like it will be a 10 day wait, before I can make an appointment.

[SecondLife in reply to mazbee]

Hi, I have only just caught up on all the postings but agree with everyone that you are being given the run around. I have been in the same position where I felt that the surgery were not giving hubby the care he deserved so waited until 6:30pm and called the out of hours service, a very nice female Polish doctor arrived, checked him over and had him admitted immediately due to ongoing tia's and he stayed there for 5 days until they sorted him out. It is easy to say contact your MP/PALS/Practice Manager etc. but this takes time and effort, you have to choose the easiest option for yourselves. Is the receptionist that is saying you have to wait until the test results are back, if so ignore her and insist on an appointment and put the worst case scenario to them. Hope you get on ok