HUSBAND HAS COPD

Many of you will know I have posted blogs about us not being able to get Attendance Allowance for my husband because they say he is not ill enough.

I wrote to our local MP and have received a reply (within 3 days), they say they are looking into it for me.

I sent her details (thread through the needle) detailing everything that had happened since his first hospital admission for pneumonia in February). So I will keep you informed.

Does anyone on this site have oxygen at home, because my husbands sats drop to 78 when they take him off oxygen in the hospital and ask him to walk about, which he can't do.

The specialist says that when the pneumonia clears he can go home but does not need oxygen prescribing. If his sats are only 88 when he is at his best sat down (no pneumonia) but drop to 79 at his best when he tries to walk I would have thought oxygen would have helped him tremendously to get from one room to another.

They have told him that his lungs have deteriorated again so wouldn't oxygen prevent this happening?

I would like your comments please.

[Gordon57]

In my experience, MP's can be good at getting answers, not always the ones you want. They will make enquiries on your behalf, with the head of a department, but it does not mean they are able to change anything. What is more likely to happen is that you'll get 'advice' back on what steps to take next.

[Hidden in reply to Gordon57]

Thanks, I just wanted to take things a little bit further, because the way things are going, my husband will not live through the winter.

[Hidden]

Hi - If your husband's sats are still low when he is ready to leave hospital and go home, then they normally arrange to have an oxygen concentrator installed at home ready and waiting for him. If his SATS were previously this low before he had the pneumonia, then you need to point this out to them and ask for him to be assessed for long term home oxygen. If the hospital don't do this then ask your GP/respiratory nurse to arrange for it as soon as he is ready to come home.

Where there is sometimes some confusion is when someone with previously normal SATS has pneumonia. They may temporarily have low SATS and/or C02 retention because of the pneumonia, with it normalising again as they recover. In this scenario they may be fine to go home without 02 once recovered, or may need it at home temporarily for say 6 weeks - 6 months while convalescing and getting back on their feet.

To sum up - if hubby has had SATS problems prior to this exacerbation then yes he certainly needs 02. If his SATS were only down with the onset of his exacerbation, then he may need either temporary 02 or none at all post exacerbation. So - keep asking questions until you get full explanations as to their thinking and until you are satisfied that all is as it should be.

[Hidden in reply to Hidden]

Peters Sats, when he is sat down are always 88/89, but when he tries to walk then they drop dramatically sometimes down to 75/76/ The specialist says he doesn't need oxygen but I say he does, so what is the answer, argue with the medical staff. I am at my wits end we no longer have a family life because he cannot go out, hence the reason we have ordered a wheelchair (had to buy it ourselves as usual) to enable us to at least go out together.

[Hidden]

It seems you have two separate but related problems the one being getting attendance allowance that you are dealing with through your MP and his office, the other is making sure the appropriate medical care is in place. When I needed oxygen on leaving hospital the physios moved me onto pulmonary rehabilitation where they could monitor my oxygen needs as my condition improved .

Take on each problem separately as they are each a plate full without mixing them up.

[Hidden in reply to Hidden]

Thats the only way I can play this, I have been trying to get attendance allowance for months now and since then Peter has been hospitalised two more times since then for pneumonia If he doesn't receive home oxygen then all I can see is him being re-admitted to hospital for pneumonia, as it is a vicious circle, if he cannot breathe, he cannot walk, if he cannot walk his lungs are inactive and all the gunk sets in his chest and turns infectious back to square one. If he had oxygen it would enable him to walk upstairs instead of crawling on all fours and he would be more active around the house, he cannot, when he is his normal self, no infection walk more than 4 yards, he cannot even get a blue badge, that is another thing I am fighting for. This is all falling on me and I have to do it altogether as it will never get sorted.

[chesty]

Been in hospital since Feb with pneumonia? good grief, or have I read it wrong.

If he needs oxygen at home they will supply it, but from what you say, it is pretty certain that he would be prescribed o2, and the A.A would be a foregone certainty as well, in my humble opinion.I cannot see any objection to any of your concerns, if they are indeed as you say, there should be no question as to his entitlement on all issues you raised

chesty

x

[Hidden in reply to chesty]

No, he was admitted to hospital with pneumonia in February, then again in June, then again this week, the specialist has said he does not need oxygen even though the physio had him try and walk without oxygen and his sats dropped to 74. His sats are only 88 when he is sat down with the oxygen mask on.

The AA staff say he is not ill enough to warrant AA. We are also fighting for a Blue Badge, he has been refused, even though they have never seen how far he can walk, I have pressed for an appointment where he can be assessed by actually being seen. He has an appointment next month, we will have the wheelchair by then (paid for by ourselves as usual).

He was in tears last night as I took him for a wash in the wheelchair and I had to help him get dressed, he has gone from a 6 ft 4 ins hardworking husband and father to a shell of a man all because he cannot walk about without nearly collapsing. If he had oxygen then his life could improve drastically, we cannot even go out for a meal with our family because he is so short of breath the food makes him choke and when he starts coughing he wets himself which is part of the COPD problem.

[Hidden in reply to Hidden]

The NICE Guidelines for COPD state that any patient with oxygen levels below 92% should be assessed for home oxygen. If they are still being awkward then tell them to refer to the guidelines. If it's not sorted while he is in hospital then insist on an immediate referral for assessment in outpatients asap.

Here's the NICE COPD guidelines for downloading:

guidance.nice.org.uk/CG101/...

(Pages 24 - 26 of the guideline contain the info relating to oxygen).

[Hidden in reply to Hidden]

Thank you so much, I wish my printer was working I could have taken a copy of this.

[derrylynne]

I fully endorse what Parvati says. Last time I was in hospital they would not release me if my resting sats were below 92.Insist on oxygen assessment as to have such low sats will make him ill, and put strain on other organs.

[Hidden in reply to derrylynne]

Thank you for your comments, my husband spoke to the specialist about this and he said they only follow the NHS guidlines.

A few weeks prior to my husband being admitted into hospital for pneumonia the specialists registrar referred him for Oxygen Therapy tests, we are awaiting an appointment, but the specialist is now saying my husband does not need home oxygen as his sats are fine, 88 when resting, 79 when walking which is ridiculous as he cannot walk at all, he is housebound, we are housebound 24/7.

What the heck do we do, do I wait for the appointment coming through for the tests and hope the specialist has not cancelled it or confront him, I cannot make him give him oxygen for home and I don't want to make waves as my husband will be in and out of hospital for the rest of his days.

[derrylynne]

even if he is judged not to need home oxygen, he will almost certainly need ambulatory oxygen for walking and exercise. I do not use home oxygen and indeed hope it will be a while before I do. One his exacerbation settles his needs at home will be more obvious. The appointment for assessment can take a few weeks, it did for me. After the bank holiday ask his respiratory nurse if she has any idea when he will get the assessment. This will give confirmation he is on the list. Once you have done that don't worry. He will not be refused oxygen once they see his sats dropping on the walk test to the lows you describe.

[Hidden]

The problem is he does not have a respiratory nurse, we did not know about these and the GP never told us, we only found out when we saw the specialists registrar and was told that the GP refers you to one. She rang us and said she had a waiting list as long as her arm and did not know when she could see him, so between the GP's giving out antibiotics and steroids like sweeties, the specialist not giving him ANY kind of oxygen to take home with him, we are like I said, prisoners in our home because he cannot walk to the front door without nearly been on his knees. A wheelchair is no good if I can't get him outside and into the car, if he had portable oxygen then he could use it to help him walk to the car and then once inside and sat down and he has come round and got his breath back, we could go off for the day, I could push him in the wheelchair. What a difference that would make to our lives, actually being able to go out as a couple.

[bonzothehoss in reply to Hidden]

have you taken legal advice about any of this? it might be that a letter from a solicitor might rattle a few cages. doctors, like all professionals these days, are always mindful of negligence claims and it sounds as though there is some scope for manoeuvre by the medical people here. even saying you are about to take legal advice might concentrate their minds a bit...

[Suzy6 in reply to bonzothehoss]

Stay on the case sweetthing . He is lucky you are fighting his corner. Seems like no one else is.

Hope for good results soon.