Hospital Type Care in the Community

Unfortunately due to a growing list of antibiotics that Hubby is allergic to when he recolonizes  a nasty bug called Klebsiella in his urine he has to have a “Domestos” strength  I.V. delivered antibiotic to clear it up. This necessitates a trip via A&E to get a cannula fitted, check up on severity, blood tests etc. Then Hubby in theory needs to take up a hospital bed for up to 7 days for an IV to be given either once or three times a day depending on which one is chosen. Taking up a bed that someone that needs high level acute nursing input could justify having more than he.

Last time this happened we got the hospital bit done only having to stay one night, then we were sent home under the care of Medihome Ltd. This company employs nurses that mean that hospital care can be given in the community. We were very thankful to be back at home as being in hospital means difficulties getting edible food for both of us, being unable to shower Hubby, carting his special Roho air mattress with us, and generally trying to cope with his Spinal injury care in an alien environment. We loved this service, the nurses were some of the most experienced we had come across in a long time. Only criticism I would have is that the antibiotic was given via a bolus rather than via IV. I guess time cost money versus minor extra patient risk.

This time was different, we found that Medihome Ltd have not had their contract renewed to do this service anymore. We were unable to get to the bottom of what had gone wrong or whether it was purely a financial decision.  

We explained our situation to the hospital consultant who could see the sense of what we were saying, Hubby is safer at home due to his pre-existing conditions that make looking after him in a general hospital a nightmare for all concerned. He had a think about it and suggested we make use of the new Ambulatory Care Unit, going there once a day in the morning for the treatment. This having weighed up the alternative of a hospital stay we agreed to do.

So every morning for five days I got Hubby wrapped up against the chilly winter mornings, loaded him up in our specially designed WAV and off we went. Sounds okay doesn’t it? Well if only you knew what that means for Hubby, 15 minutes each way of pure pain when you are not feeling so good. It does not matter how slowly or carefully I drive, each speed bump, pot hole or road imperfection he felt as pain shoots through his spine. Then to arrive and find no disabled parking spaces adds insult to injury, as I have to unload him via our ramp quickly to get him inside the warm before his body temperature starts to drop, him having no body temperature control. (poikilothermia) .

This of course has left us asking why hospital type procedures cannot be performed in the community? Sometimes it is better for the patient.

Now a week later he has contracted Clostridium Difficile, no doubt from being out and about amongst germs that at home I try so hard to control.  So now I try and get his fluid levels up at home to prevent dehydration as of course that would mean another dreaded trip to the hospital for IV fluids.

 

Sometimes being treated at home for people with pre-existing conditions is not only more comfortable it is safer.

Disability Facilities Grant – discriminated against yet again.

Introduction.

Many readers will have followed our struggles to find a wheelchair accessible home in Spalding Lincolnshire. So just to recap, we have tried to help ourselves by:-

1.  Private rental but nothing out there ready to move into, and landlords will not give you a long enough tenancy to apply for the grants for alterations needed.
2. We are currently on SHDC s waiting list, but again they do not have suitable properties on their books, and they are about to change the rules so that our local connections will not be local enough anymore. We currently have the maximum points for a medical grounds move.
3.  We are on numerous housing charities waiting lists, but they do not have properties in Spalding where we want to live.
4. We spoke with the organisations that report to help the disabled with specialist mortgages, but because I am of working age, likely to return to work, not disabled myself, they will not help us.
5.  Have tried to educate and make local politicians aware that the system is not working for the poorest, most disabled in society.
6. We found an organisation, MIVA Partnership that are trying to help us, but once they get this latest news I think they will run for the hills. They proposed buying a place for us to adapt and rent off them long term. Their biggest struggle is getting the necessary finance so that they can make the standard buy to let return ratio of 8%.

Update.

Two weeks ago we thought we had found an ideal property to alter for Hubby’s needs. Just so you know we are not looking at palaces it was at the £120k mark. Our contact told us to start the ball rolling for the Disability Facility Grant as the property would need some substantial alterations to make it suitable for partially tetraplegic (paralysis in all four limbs) Hubby, me and our care team. Our contact in the housing team at SHDC sent a referral for us to the Lincolnshire County Council OT’s based in Lincoln.

Today I had a very depressing conversation with one of the OT’s where it has become very apparent that we do not stand a snow ball in hells chance of getting any financial help, not because we do not qualify but because the procedures in place are so rigid that they discriminate against the most disabled and poorest in society.

Why do I say that ?

1.       I was told , the whole grant procedure can take 5-8 months to release the monies, meanwhile you would have to live in the property.

                        WE can not do that, I would be putting my Hubby in physical danger if I did that. He can not go 5-8 months without having a shower, not being able to gain access via ramps to the property, not being able to access several rooms due to door sizes, etc. Also he is not well enough to live on a building site. I also have to consider the Health and Safety of our care team and myself come to that. Working in confined badly designed spaces is an accident waiting to happen. I am in constant pain at the moment because my back is close to giving out on me, due to all the manual lifting I have to do, in our currently badly designed space.

2.       What private landlord is going wait 5-8 months before he gets his monthly rent ?

NONE ARE.

So it looks like to me , that unless you own your own home, and are therefore not the poorest in society, there is no help for you to ensure that you live in a safe, and accessible home.

In Summary.

CAN SOMEONE PLEASE EXPLAIN TO ME WHAT SEVERELY DISABLED PEOPLE WHO NEED TO RENT ARE SUPPOSED TO DO, as I have run out of ideas?

Most people when we tell them what has happened to us, can not believe that in BRITAIN today we do not look after our most vulnerable, what does that say about the society we live in.

Please RT this, copy it, spread the word, people need to know the present system is not helping the most needy in society.

There's Patches & There's Patches

Weekend

pretty uneventful, starting to get into a routine, up at 6am do his catheter, lie down for another 20mins, up roll up bedding, put mattress into vacuum pack bag roll out the air. Get a wash or shower, ready for another day. Saturday got out to ASDA in the afternoon, bought a really cheap DVD player as the ones on the provided TV's are not working and some food for myself for the week.

Monday 2nd July

Lots to do on this day. Try to co-ordinate everything with the busy nursing team, we manage it, sort of, but a bit manic. 2 lots of IV antibiotics, bowel emptying, vacuum dressing change, sounds easy when you say it quick. Every item takes time and can not be done at the same time. The Etrapenem Antibiotic takes 1/2 hour, the [x-]mycin one takes nearly an hour, bowels 2 hours, vac dressing 1/2 hour, then there's lunch and dinner, as you can see the whole afternoon is shot. Well we get Hubby settled after all that poor dude is knackered. Then just before 6pm the drug run, brought us a bit of a laugh. They tried to prescribe Nicotine Patches instead of his pain patches. Very funny since Hubby has never smoked and was a keen sportsman before his illness. We could have been upset by this but you have to keep a sense of humour about these things.

Yesterday.

Got up as usual. Get Hubby his breakfast, look out of the window and see a beautiful little beasty.

A little dear, thought it was a goat at first but no it really is an urban dear. Yesterday was quite busy, doctors rounds and met up with Hubby's OT again. Hoping to mobilise him in a wheelchair with pump attached. Any way we will see. Have a bit of do with cleaner he has a thick heavy cold, coughing and sneezing and then wondered why I didn't want him anywhere near Hubby.

Ground Hog Day...

You could re read my previous blog over and over again as that is life here in our household. Relentless same thing 7 days a week , no rest days for either hubby or me. Particularly bad day today, feel like walking on egg shells trying not to set off one of his outbursts born of pain and frustration. He is having one of those particularly bad days, "if they (medical profession) don't do something soon I wont be here for them to do anything" intimations of suicide, I listen to his angry words and wonder yet again if I could do more, feel like it is my fault, that we cant make anyone listen and most importantly act.

It was back in March over 4 months ago that he made the brave decision to let the medical profession operate on him again, to insert a Baclofen Pump. He has lost all faith that anyone can help him live again. His is not a life worth living at the moment, every breath = pain, every movement = pain. So here he sits in our living room watching TV (well looking through it lost in his own thoughts) sitting as still as humanly possible, waiting for the next painful spasm to nearly throw him from his chair. While I talk to my only companion this computer, trying to find answers to the unanswerable.

Why are people like Hubby left in the community in such pain when there are medical interventions that can and morally should be done urgently to stop them from going out of their minds.    

I'm here but where are the professionals ?

August 1^st  2011:

00:20    Go to bed. Manually lift into bed. Work on TDB’s legs to get him settled.

00:45    Finally get to lie down myself.

02:30    Reposition TDB’s legs.

03:30    Reposition TDB’s legs.

04:20    Reposition TDB’s legs.

05:30    Needs Catheter doing early. Sit up on edge of bed. 500ml collected.

07:00    Reposition TDB’s legs.

08:10    Get myself up.

08:30    Get TDB up. Make coffee + give him 250ml of Cranberry juice.

09:00    6 sprays of Sativex taken.

10:00    TDB does not want anything to eat. Wash and give shave. Sitting up difficult, breathing a struggle, hip spasms bad. Put him back to bed to work on his legs for awhile. Get him back up 11:00.

11:45    Catheter done, darker yellow 250ml. Stretch legs out again in wheelchair. Pain levels quite high again today, hip / leg spasms bad. Took 2mg Detrusitol.

12:15    Cook bacon + egg sandwich which he manages to eat.

12:40    Stretch TDB’s legs. TDB watching TV trying to keep as still as possible to avoid pain.

15:00    TDB put back to bed. Reports bladder snatching like he needs to go to toilet. Exercise given on bed. Takes 2 Neurofens.

15:30    Start to prepare dinner, corned beef stew.

16:30    Got TDB out of bed. Exercising him before hand. He then took 5 sprays of Sativex. Says he is coping with painful snatching of leg / hip muscles today but feels strong enough to deal with.

17:30    Catheter done early due to snatching feeling in bladder.

17:45    Dinner served.

18:30    Pudding .

18:45    Leant forward as feeling out of breathe and tight across chest. Put back again will watch for further signs of distress.

20:00    Detrusitol 2mg. Feeling flushed. Antibiotics taken.

21:00    Extra Catheter, mid yellow 250ml. Both go to lie down for a couple of hours.

23:20    Get up. Brush teeth get tablets ready.

00:00    Catheter done, mid yellow 150ml.

August 2nd 2011

00:25    Tablets taken. Back to bed.

00:40    Work on TDB’s legs, get to bed myself.

01:45    Reposition his legs.

03:30    Reposition legs.

06:00    Catheter 350ml mid yellow.

07:00    Reposition legs.

08:10    Reposition legs get up.

08:30    Get TDB up after working on legs. Says back & groin pain very bad today. TDB needs to wear shorts today due to cleaner coming at 10am.

09:00    Coffee & Fiber orange drink for TDB, bowel day.

09:30    Wash TDB.

Same thing day in day out 24 hour back breaking care with no breaks....

ME the human hoist.

Yesterday our under performing care agency finally gave up, took their ball and went home. Making our one remaining carer redundant. Leaving me yet again a virtual prisoner at home looking after hubby 24/7 on my own.

What is the problem? the crux of the matter is, that until the local medical profession wake up and realise that without the surgical intervention needed in this case hubby will continue to be care agencies worst nightmare, someone with massive, H&S non conforming manual handling issues. He can not use a hoist because of the pain / spasms. He can not sleep because the spasms constantly jolt him awake. He needs constant physiotherapy to get through the day, in the form of extreme, forcible straightening of his legs.

All of which everyone expects me as sole family carer to carry out 24/7, surviving on glimpses of sleep in between his spasms. Very hard physical work with no rest, constant day in day out.

23:00hrs 29 June - both having tried to rest in bed for a couple of hours, we get up again. I help brush his teeth, give him his pills. I feel like crap and just want to go to sleep.
Midnight - carry out his urine catheter.Wait for twenty minutes and then back to bed again.Which involves me manually lifting him from his chair to his bed.
01:00 my head finally hits the pillow after working on him, stretching his legs, for 20 minutes trying to get his body to settle.
02:20 he wakes me as his legs have started to spasm again. Drag my tired bod out of bed to help him settle again by forcible straightening his legs, stretching him out etc. He can not settle because he feels like his back is twisting, so I sit him up over the edge of the bed starting the whole regime again. Finally getting back to bed at 02:40.
03:45 he wakes me again, needing an extra urine catheter doing and his legs are spasming again. I finally get back to bed at 04:05.
06:00 up again to do another catheter, more physio etc. 06:15 lay down again.
07:30 his back is in such pain that I have to start to get him up. Try and wake myself up with copious amounts of coffee, finally getting him up at 08:15, which you have guessed it involved more manual handling , lifting by his human hoist, ME.

That's the night shift done, so on with the day which will involve several trips back to bed to carry out physio, and all the stuff that a day shift entails, washing, feeding, entertaining, campaigning etc etc...

This is our life day in day out, we ask for help, but it never comes, day in day out, no rest, no change, no freedom.