17th January after a protracted 3 year wait, Hubby has at last got a slot to replace his worn out left knee. We had his first attempt to get this operation done cancelled at the last minute back in 2010, due to the local hospital deciding that they could not deal with Hubby's other disabilities. The decision was of course taken after sitting on the waiting list for nearly a year all told.
So after much debate as to the benefits of carrying out such a procedure in some one who can not and is not likely to walk, it was decided to carry out the procedure for the alleviation of pain and to get Hubby putting some weight through his legs again as he was able to do when he was first sick. Being able to stand using a standing frame or tilt table is extremely beneficial for some one with a spinal injury as it helps with the processing of bodily functions.
RNOH Stanmore as usual with some negotiation, reluctantly recognise that Hubby needs someone with him to look after his pre existing problems. So they manage to source us a side room rather than a bed in an open bed ward. Our journey there was great as our local GP's made sure we had the appropriate type of ambulance with a technically qualified crew, minimum grade EMT. The usual first aid plus trained transport crew being of little use to me if we have an emergency Autonomic Dysreflexia attack to deal with.
When we arrive we find out we have been assigned to the Duke of Gloucester ward, which is very near to the EAT Restaurant but accessed by a linked walkway that is open to all the elements.The room is pleasant enough , has a TV, sink and room for wheelchair plus bags, and blow up mattress for me. I check with the staff as to how they want me to work with them. They don't want me emptying stuff in the sluice, so they will do all the urine bottle rinse outs for me, with me filling in a form re the amounts colour etc for them to officially record. Can understand this different requirement as the walk to the room would involve walking across the open ward which the other male patients might find disconcerting. They very kindly agree that I can use the staff room toilet which will save me walking back into the main hospital down those unsheltered walkways in the dead of night. We are met at the ward by a friendly face for me, Jackie the ward sister was at some of the Hospital rebuild project meetings I had previously attended.
Having passed to the staff the detailed care plan that I have developed for Hubby, just in case I am ever incapacitated , I receive quite a few compliments regarding its contents. Very gratifying to receive such from professionally medically qualified people, I must have learnt something I guess.
Hubby's Spinal Injury Consultant visits very soon after our arrival to see whether Hubby wants his Baclofen pump adjusting to deliver more medication while he goes through the procedure which might set off his very bad spasms. Hubby decides to try and manage as turning up the dose can affect his breathing and arm function.
Friday, Hubby leaves the ward at about 10am to go for his knee replacement op. It is freezing cold outside and he is wheeled along unsheltered walk ways back into the building that holds the theatres. About 1:30 pm I get the call that I am needed in recovery as Hubby is giving the staff hell. Apparently he feels they are moving his body about like he is a piece of meat rather than asking first. He is also I find out desperate for a urine catheter which might be the actual source of his irritation, and verbally combative behaviour. I sort this and we get him back on the ward as soon as possible. The operation went really well and nearly straight away I am able to move his knee, which is an absolute god send as he hates having his catheter done when lying down, preferring to sit over the edge of the bed which to do I have to bend his knees to swing him into the up right position.
Saturday and Sunday we meet the weekend on call physiotherapist but Hubby is not feeling well enough for her to get stuck into some passive exercises yet. We explain it is not such a problem anyway as he is bending his new knee on a regular basis anyway because of the way I have to look after him. Monday we meet the ward physiotherapist briefly, talk to him about Hubby's position and disabilities but no actual physiotherapy is carried out by him. Same on Tuesday and Wednesday , we are not surprised as we have come across many that if you mention spinal injury they will do anything except actually work hands on with the patient. If I had anything to do with this type of operation again and that it involved a Spinal injury patient I would recommend that the rehab be carried out by specialist spinal physio would are not afraid of what Spinal injury means but have enough joint mobilisation knowledge to give rehab on a joint replacement. Not such a loss in this case for us though as I carry out a lot of passive movement with him as part of our daily routines, we just feel a bit short changed that's all not being treated the same as the able bodied patients on the ward.
Hubby recovered pretty well , although because of the terrible food at RNOH I did start to become a bit concerned that he was surviving on baked potatoes and apple crumble as he could not stomach anything else on the menu. He had become dehydrated as his urine colour and amount told me so. We were therefore pleased to be told he could go home on Wednesday afternoon. We explain to the nurses that he needs an ambulance that could take him in his wheelchair but need a crew with at least one member that is EMT qualified , just in case of emergency and with the weather being so bad. So the nurse orders a technical ambulance for our journey home.
On the Wednesday we had to get Hubby's Baclofen pump refilled then after that we were free to head home. We got organised making sure we were all packed and ready . We let transport know that we are ready just in case our allotted crew is also ready a bit earlier than we had ordered.
From here on things went awry ...
feedback from the transport office was not accurate and led us to believe the type of crew requested was not being made available. Therefore trying to be helpful I say we will risk it with and ordinary crew as long as the crew are happy taking the risk especially in light of the weather closing in. Time was getting on, people were dithering , Hubby by 2pm had , enough and pulls the plug, which causes knock on problems because of the high demand on beds at this time. The Out Patient Manager whose department transport comes under, comes to apologise to Hubby, but he by this time is in no mood to listen. Apparently we were allocated the type of ambulance we had requested but it got delayed due to the weather , not the info conveyed to us. I had a quiet word with him on the side, telling him I was not impressed with his departments communication skills or management in a crisis situation i.e. the weather. I was thinking back on what we used to do in my traffic control days, where keeping the customer updated was paramount or else the power stations would not have had enough coal to burn.
The next morning the manager must have taken the decision that since we were willing to risk travel without an EMT the day before it was totally okay to provide a small mobility type van to transport us home. As soon as it showed up I knew it would be too small to fit electric wheelchair + special mattress + luggage and also have room for me to look after Hubby. Another hour delay , so we negotiate putting Hubby back on a bed for a while while we wait for a more suitable vehicle. Eventually a mini bus type vehicle turns up with just a driver, no EMT , but we need to get Hubby home so we risk it.
Thankfully it was an uneventful journey and we did not need to divert to the nearest A&E. Very annoying that in a hospital that deals with people that suffer from the potentially life threatening Autonomic Dysreflexia every day the transport department do not treat the potential risks in a sensible way.
RNOH Feedback scores :
Surgery 10/10 - Nursing 9/10 - Rehab 4/10 -Accommodation 3/10 - Food 1/10- Transport 1/10
Sunday, 27 January 2013
Saturday, 5 January 2013
Human Rights & #Caring
The British Institute of Human Rights in association with N:Compass funded by Equality & Human Rights Commission has produced a leaflet on the Human Rights of Carers and those they care for :- http://bihr.org.uk/sites/default/files/BIHR%20Pocket%20Guide%20for%20Carers.pdf
Having read it I realised that both my Hubby's and My rights had been trampled on time and time again since he had become sick in 2007.
Lets start with Article 8 : Right to respect for private and family life home and correspondence.
- being able to maintain and establish relationships - well lets see how well authorities have done on that score, I have to be with OH 24/7 as leaving him on his own is dangerous, I cant even take a shower without listening out for him asking for help. We have food delivered to our home or else we would starve. I am a prisoner in my own home. He has been under the NHS continuing Care Regime since 2009 where care workers are supposed to be provided. We have had provision for various reasons for about 8 months out of the last 39 months, 25% . Last year was especially bad as at the turn of the year it was known that my father was ailing with lung cancer, I spent 3 months begging social services under respite for me to provide ad hoc cover so that I could visit him before he died, none was provided, he died on May 7th I was not even given any cover so that I go to his funeral. This happened in in 2010 as well, as my Nan died, who I was very close to, again no cover provided so that I could go to her funeral. My mother is in her 70's I have not seen her for over a year so I guess that will be the next family funeral I will miss. My eldest brother is severely LD I haven't seen him in 3 years.
We had a phone call from our care coordinator last night stating that care provision for OH is being supplied on the basis that I need to go back to work, not on the basis that he needs care provision. The implication being that if I do not find work I will be expected to carry on my 24/7 duties. I have written papers to the people in charge previously with risk assessments showing what potential risks they are taking with my health and that of my OH. But no one gives a shit or believes you until someone reaches crisis point.
same goes for rest of the list -
being able to access medical treatment - been trying to get a MOT life-scan for last 6 months as things do not feel right in my worn out body.
respecting physical and mental well being - I love cycling , it used to keep me sane and fit, now I am confined to trying make do with an indoor Wii cycle which is not the same. My weight has become a problem as I can not exercise or get enough sleep. I have reoccurring minor neck / back / knee problems because of all the lifting I have to do. I have not had more than 3 hours sleep straight for 4 years.
respecting right to make choices - my life is ruled by the times help is needed to be given to my OH, I cant just decide to have a lie in, go out shopping, cycling etc I have not been able to earn a living for the last 4 years making financial restraints on a very expensive illness where OH needs suitable housing, transport and equipment.
being able to participate in community life - I do what I can via the computer as now with this blog, but meet real people, go to local meetings , IMPOSSIBLE.
Article 3: Right to be free from inhumane and degrading treatment
I would argue that many of the things listed above constituted inhumane treatment. I am being imprisoned in my own home,(which is also an Article 5: Right to Liberty issue ) by the authorities that do not seem to care about my freedom. I am suffering extreme cruelty, constantly being pushed to limits of human physical and mental capabilities. What I have been put through is akin to torture, sleep deprivation, lack of human contact, hard physical labour, prisoners get treated better.
Article 2 : Right to life
Take reasonable steps to protect life, I may be sort of okay at the moment, but what has this experience done to shorten my life.
Article 14: Right not to be discriminated against
As a carer of a severely disabled person I have been discriminated against. I am ignored because the authorities know I can not get out to protest against my and my Hubby's treatment face to face. Hence why in July 2010 I went on a short hunger strike as the only protest I could make from my home. I have been at times unable to look at possible suitable housing because no one was available to look after OH who was too ill to attend, no quarter was given. Hubby is constantly discriminated against directly, like how difficult it is to get a suitable disability car for him at a price we can afford, care-workers, housing, shopping, travel, access to treatment he has had operations cancelled because of his disabilities and age.
I am pretty sure there are other parts of the Human Rights articles that have been affected as well, Article 11 The Right of assembly and Association, Article 4 The Right to be free from Slavery or forced labour seems pertinent.
Life as a carer, fun fun, fun, NOT...
Having read it I realised that both my Hubby's and My rights had been trampled on time and time again since he had become sick in 2007.
Lets start with Article 8 : Right to respect for private and family life home and correspondence.
- being able to maintain and establish relationships - well lets see how well authorities have done on that score, I have to be with OH 24/7 as leaving him on his own is dangerous, I cant even take a shower without listening out for him asking for help. We have food delivered to our home or else we would starve. I am a prisoner in my own home. He has been under the NHS continuing Care Regime since 2009 where care workers are supposed to be provided. We have had provision for various reasons for about 8 months out of the last 39 months, 25% . Last year was especially bad as at the turn of the year it was known that my father was ailing with lung cancer, I spent 3 months begging social services under respite for me to provide ad hoc cover so that I could visit him before he died, none was provided, he died on May 7th I was not even given any cover so that I go to his funeral. This happened in in 2010 as well, as my Nan died, who I was very close to, again no cover provided so that I could go to her funeral. My mother is in her 70's I have not seen her for over a year so I guess that will be the next family funeral I will miss. My eldest brother is severely LD I haven't seen him in 3 years.
We had a phone call from our care coordinator last night stating that care provision for OH is being supplied on the basis that I need to go back to work, not on the basis that he needs care provision. The implication being that if I do not find work I will be expected to carry on my 24/7 duties. I have written papers to the people in charge previously with risk assessments showing what potential risks they are taking with my health and that of my OH. But no one gives a shit or believes you until someone reaches crisis point.
same goes for rest of the list -
being able to access medical treatment - been trying to get a MOT life-scan for last 6 months as things do not feel right in my worn out body.
respecting physical and mental well being - I love cycling , it used to keep me sane and fit, now I am confined to trying make do with an indoor Wii cycle which is not the same. My weight has become a problem as I can not exercise or get enough sleep. I have reoccurring minor neck / back / knee problems because of all the lifting I have to do. I have not had more than 3 hours sleep straight for 4 years.
respecting right to make choices - my life is ruled by the times help is needed to be given to my OH, I cant just decide to have a lie in, go out shopping, cycling etc I have not been able to earn a living for the last 4 years making financial restraints on a very expensive illness where OH needs suitable housing, transport and equipment.
being able to participate in community life - I do what I can via the computer as now with this blog, but meet real people, go to local meetings , IMPOSSIBLE.
Article 3: Right to be free from inhumane and degrading treatment
I would argue that many of the things listed above constituted inhumane treatment. I am being imprisoned in my own home,(which is also an Article 5: Right to Liberty issue ) by the authorities that do not seem to care about my freedom. I am suffering extreme cruelty, constantly being pushed to limits of human physical and mental capabilities. What I have been put through is akin to torture, sleep deprivation, lack of human contact, hard physical labour, prisoners get treated better.
Article 2 : Right to life
Take reasonable steps to protect life, I may be sort of okay at the moment, but what has this experience done to shorten my life.
Article 14: Right not to be discriminated against
As a carer of a severely disabled person I have been discriminated against. I am ignored because the authorities know I can not get out to protest against my and my Hubby's treatment face to face. Hence why in July 2010 I went on a short hunger strike as the only protest I could make from my home. I have been at times unable to look at possible suitable housing because no one was available to look after OH who was too ill to attend, no quarter was given. Hubby is constantly discriminated against directly, like how difficult it is to get a suitable disability car for him at a price we can afford, care-workers, housing, shopping, travel, access to treatment he has had operations cancelled because of his disabilities and age.
I am pretty sure there are other parts of the Human Rights articles that have been affected as well, Article 11 The Right of assembly and Association, Article 4 The Right to be free from Slavery or forced labour seems pertinent.
Life as a carer, fun fun, fun, NOT...
I’m not Superwoman, just a Caring Wife.
Just a note to make
a wares,
just in case
someone cares.
Every time he
cries with the pain, shouts and blames me, who is it in the firing line, is
it superwoman ?
oh no its just me.
Every time
suicide is in the air, his pain he can not bear, who is there, is it
superwoman ? oh
no its just me.
Every time he
angrily asks, why the medicos are not doing their tasks, who is there, is
it superwoman?
oh no its just me.
Every time his
feet fly off his chair, spasming in mid air, who is there, is it
superwoman ? oh
no its just me.
Every third day
who is there to collect the sh**, not a wife’s normal bit, is it
superwoman ? oh
no its just me.
Every six hours
to collect the p***, without a miss, is it superwoman? oh no its just me.
Every time he
needs shifting who is doing the lifting, is it superwoman? oh no its just
me.
Every time he
passes out, with blood pressure no doubt, is it superwoman? oh no its
just me.
Every time a
new drug supply, who is it to apply, is it superwoman? oh no its just me.
Every time we
ask for help and the medicos whelp, who is there, is it superwoman?
OH NO, WHY IS
IT JUST ME?
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