Missing jon...: Hello everyone, I am... - Lung Conditions C...

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Missing jon...

12 Replies

Hello everyone, I am really missing my husband. He left in the early hours of this morning on transport... Took him to Stanmore hospital for his weeks assessment. He did contact me, and he now has Internet so we can chat online!

It's the first time since his accident that we have been apart... I feel like I am missing something. I am daft right? I mean he is only going to be away this week, back on Friday! He told me that he has numerous specialists and doctors prodding and poking him and performing tests on him. This is good!! It's taken 5 years to get to this point! He also told me not to get my hopes up, not that I am expecting a miracle or anything. Any improvement would be good. The doctors told him is is on a long long painful road of recovery and the doctors think maybe regaining 50% of his mobility and posture may take up to 10 years that's if it comes back. My husband is feeling up beat and hopeful as its the first time anyone has helped him. They have already said they will have him back in for 6-8 weeks reabilitation...

It's all positive right now, still missing him!

To keepmyself busy I went back to my cross stitching.... It's a Scarlet Letter design called Mary Gail... Coming along slowly.

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12 Replies
Katinka46 profile image
Katinka46

So glad that things are finally happening. Is he in the spinal injuries unit at Stanmore? Whatever the outcome the psychological boost of knowing that there are doctors concerned and investigating and taking it it all seriously is massive.

Look after yourself.

Love the tapestry

Love and hugs

K xxx

in reply to Katinka46

Yes it's the rehabilitation unit, Jubilee House I think they call it? It's taken such a long time to get to this point, it hardly seems real... Jon tells me they are teaching him Thai Chi (not sure how it's spelt)! Maybe that will help in some way? He says he has never seen so many doctors looking at him! After fighting for years to get him into Stanmore I am just pleased they are actually doing something now.

Thank you :)

Katinka46 profile image
Katinka46 in reply to

The reason I asked is that my husband has spinal injuries from an accident; he was run into by a car cycling to work one day. Luckily the two fractures in the spine were seen on X-ray immediately and he was sent to our local spinal injury unit in Wakefield. After 22 years he is due back in for a re-assessment. How come Jon missed out for so long?

K x

in reply to Katinka46

The whole way through Jon's care has been a joke.... For 2 years they forgot about him and left him on horrendous medication. .. He was literally a vegetable for those 2 years and has no recollection of it in his memory. We have had to fight and fight to get any help for jon. We have never ever used the NHS for anything other than having my daughter.. We don't know the system. Jon had a works accident with a forklift at work and all the doctors kept saying was we don't know enough about the back to know exactly what is wrong with him. He had several disks out 5 I think from neck to base of spine... He cannot straighten up or put his right foot on the floor. He is in constant pain... He did after a while get to see the pain clinic at the hospital, they are the ones that put him on all those drugs and they did nothing as he was still in pain. He used to scream with the pain. The pain team could not do anything with him, told him to manage it himself! I kept taking him to GP, then eventually called GP out to our house as it was too painful to take him anywhere. GP just kept saying well what do you want me to do!! They are the professionals... We said we just wanted some help. The GP said if my husband was over 60 there would be loads of help.... Seeing as he is only 44 there is no help or services that can help!! So we looked on the internet found Stanmore hospital and saw it treated back problems. Told GP and he wrote a letter, my husband was refused treatment there...so we asked for the letter GP wrote. Omg! All details were wrong and there was no urgency and the way the GP had wrote it seemed like he was not bothered if my husband got in there or not! We asked for another letter to be referred up there and was told could not reapply for 2 years! Were told that as its so difficult to get in there. We were naturally disgusted. So we waited and waited then after 2 years asked for another letter to go up there... We went to see the specialist and they asked why my husband had not been referred earlier!? The whole system failed my husband 100% ... I am just pleased he is getting help now... 5 years down the line, I guess it's better than never.

I have spoken to my husband and they have said the damage is done and he will never get back to how he was... I will never have him the way he was.. I am heart broken, I can never walk down the street holding hands with him again. They have said maybe with constant therapy and treatment in 10-15 years he may or may not regain some straightness back... Hope, there is some. It's just all so very upsetting. He will over the years spend a lot of time going back and forth from the reabilitation unit... Fingers crossed he improves a little.

Katinka46 profile image
Katinka46 in reply to

What a horrendous story. It sounds as if there was mismanagement from the start. Have you been down the route of complaints or litigation? You don't say much about the initial accident. How? Where? Or is it too difficult to describe? If you are concerned about the passage of time, i.e. over three years since the accident, then that should not be a problem as the clock starts ticking when you have new information about the injury. Which sounds like the last few days. Your GP sounds horrendous.

Have you had any help about making a complaint?

There are advocates to help you do that.

Love and hugs

K xxx

in reply to Katinka46

Our family does not seem to have any luck at all... Nothing goes right we are always fighting to get help. It's just wrong.

The accident, yes it literally turned our family upside down and it will now never be the same again. We cannot go back to how everyone was before his accident... He is not fixable, they have told him that. All they can do is hope that over time some improvements can be done. The company he worked for admitted liability and we have had no support at all from them. So my husband is taking them to court... Maybe if they had supported him more things would be different?

It's been 5 years next month since his accident and we have always known there was something wrong with him, he can't walk and in constant pain! The doctors just would not label it or do anything to help him... Just left him and he was forgotten about in the system. It's disgusting and to be told if he was elderly he would have more options available! Just disgusting... Words fail me at times. My husband will never ever be the same now, he is a different person to who I married, I am so sad about that.. No one has helped me to understand or cope with this. And at times it really upsets me as we just cannot do normal things, hold hands and skip down the road, play fight on the floor... It really upsets me.

As far as the GP goes... Might as well give up there, they don't listen. Since his accident we have been to 3 different surgeries in this area and the one we are with now is the worst. We had to move as we were privately renting then had to move again to where we are now as its adapted for him. The GP does as little as possible, and we have to keep asking, why I am not sure? We have made complaints directly to surgery practise managers for the way we all have been treated, or not as the case is! They don't care, nothing changes.

We do have someone helping us now, thank goodness! I am ha ha supposed to be my husbands carer, and carers org come out to visit us every couple of weeks... Just to see how we are as a family and coping. They know we are not coping and the family is not coping with all our medical problems. They have talked to the gps... Told them about our situation. And we'll it's all falling on deaf ears. We have been waiting and waiting for social services to help... The carers org tried to chase it up and they told them were we're all too young for their help! So the carers org are trying to find other avenues that may be able to help us all. We are not holding our breath!

Azure_Sky profile image
Azure_Sky

It is entirely normal to feel this way Happy, I miss my husband when he goes out with George for a walk, even more when he is out for longer spells.

When I went to New York for a week it was awful, technology wasn't so advanced then so we couldn't chat face to face, like we can now,

You have time to plan his homecoming, order his favourite food for his tea and try to make a Welcome Home sign.

hufferpuffer profile image
hufferpuffer

He will be missing you too I'm sure!😁 The week will fly by you'll see, I love your little tapestry what a great way to pass some time,

I'm always happy when my big fella goes to work so I can please myself lol!hugs huff xxx

mmzetor profile image
mmzetor

its only natural to miss him especially if your together all the time but the week will soon go and at least the doctors are doing someing I wish him good luck you take care and the tapestry is looking lovely

pergola profile image
pergola

My reaction to all the above comments. To me, it is wonderful that you are appreciating your husbands. All the best X

I am sure Jon will be missing you too but such good news that he is finally getting help. Take care and enjoy stitching, Xris

grannyjan profile image
grannyjan

We are all here to keep you company happy smiles, I know it's not the same, but we are all keeping our fingers crossed for him :-)

jan x

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