Wednesday, 30 May 2012

The Ongoing #NHS Treatment - A Modern Thriller-Farce Worthy of Hitchcock

If it wasn't so serious it would make a good plot for a Disaster Movie or a thrilling episode of Holby City.


Hubby has a now confirmed level 4 pressure sore wound on his thoracic spine. We travelled in an ambulance all the way to Stanmore on May 4th. [1 1/2 hours each way ] to get a MRI scan on Hubby's back, due to the local services not being able to co ordinate the making available of the Baclofen Pump hand held computer to be available , should the magnetic interference of the MRI send the implant in Hubbys body into a fault setting. The guys at Addenbrookes will not let Peterborough play with their toys, even though they come under the same authority. Sod what is best for the patient, lets play politics. Anyway MRI shows the wound is at bone level so it is a confirmed level 4 + wound.

During the following two weeks awaiting for a telephone call from Hubby's consultant at Stanmore  re the results, Hubby develops a large [ 25cm horizontal length x 15cm high/wide x 8cm deep ] mass / swelling above the wound. looks like he has developed a large hump on his back. So I make a rather worried call to the local GP, who to his credit makes a home visit on 18th May, sends us to the local hospital for an x-ray to rule out further damage to Hubby's spine. Well this is where it gets really farcical , we have to have an ambulance with a travelling paramedic because of Hubby's condition and being at risk of developing Autonomic Dysreflexia. The local managers in their infinite wisdom have told the crews that everyone who has this type of ambulance must pass through A&E first for them to do an internal referral. So we do get our x-ray but end up staying at the hospital 8 hours door to door for something that should have only taken 3 tops. REMEMBER HUBBY HAS A GRADE 4 PRESSURE WOUND not a good thing for him to be immobilised that long, no food or drink offered until it was nearly time to get into the ambulance to go home. So I had a terrible time when we got home , trying to calm him down as he was so upset with the way he had been treated, he was in unbelievable pain and I had to deal with a near AD attack. Good news though no further breaking of bones but still he is left with an undiagnosed problem on his back.

The Following Week:

We finally get a telephone consultation with the Stanmore Consultant, giving us the name of the spinal surgeon and the bad news that Hubby's case is not thought to be an urgent priority, they have no beds therefore he is going to have to wait at least another two months or until he becomes so ill that his life will be at risk. So if we have had the money and been able to have treatment in the USA whilst still on holiday we would have been treated straight away as they deemed it so serious, but in the UK it is okay to have an open large wound on your back for six plus months.  I am getting rather frantic now and have asked the local GP's for help, as I am struggling to cope physically with all of this as I have a very painful undiagnosed trapped nerve in my lower back. [ My assumption as to what is wrong] . Then we get the old chestnut well put him in a nursing home, sounds easy does it not. From what I have read there is a national shortage of specialist spinal injury nursing homes and they are not keen on taking on someone with a medical problem for which they would usually send that person to a hospital with.

Why Do I think he should be admitted now / immediately:

  1. Skin seems to be starting to become reactive to prolonged use of anti biotic, red blotches on face, skin burning like reaction underneath pain patches.
  2. Skin redness / erythema under dressing edges.
  3. Malodor coming from wound.
  4. Wound is now bleeding [where is blood coming from ?] and becoming concave.
  5.   MRI scan shows wound is at bone depth.
  6.  Wound not responding to dressing treatments, necrotic tissue still in place.
  7. Time : initial wound sustained on February 6th – no further on with the healing process nearly 4 months later.
  8. No trained carers / nurses at home except for wife, and short dressing change visits from district nursing team, to attend to extra nursing care needed at this time, extra pressure relieving movement needed.
  9. Periodic episodes of :- shakes like chills, sharp pains in head, blurred vision, increase in neck spasm, stomach cramps, tightness in chest area – not sure whether purely SCI related or pressure sore related, seems to have become worse lately.
  10. Perceived extra loss of function / strength in arms and hands especially left side.
  11.  Very lethargic and depressed . Can not seem to get any significant / beneficial periods of sleep.
  12.  Has started to take small amounts of Diazepam again to just get through the day. [average 3mg / per day]
  13. Pain levels have increased from background everyday pain that he lives with as part of SCI.
  14.  Although persevering with the use of the alternating pressure bed, it causes him pain as it inflates / deflates under his back, and vibration sets off painful spasms in his legs. Extremely difficult to use the usual measures of side lying, as the pain in his shoulders becomes unbearable and his lack of full strength arm / hand function makes it very difficult for him to get himself a drink or do anything in bed for himself. So adding to point 11.

The Farce of this Week.

The Surgeon wants Hubby to have a CT scan locally to get more pictures of the bones at the wound site. So with the GP & the local Disability Advisor we organise the transport, remember Ambulance with a paramedic on board for safety. This was booked under the 2 hour urgent ambulance as there is no provision in the hospital transport procedures for this type of transport, you have two choices a transport ambulance crewed by first aider+ trained staff or the full monty an emergency ambulance crew. They didn't turn up, we tried again yesterday, they didn't turn up. They have no idea what this does to someone who is already very ill. He has to wear clothes that he wouldn't have to at home, all of which add to his pain levels. I have to get him dressed, even with log rolling that is painful for both him and me. Then he waits slowly getting more and more stressed about what is going to happen.  IT IS UNBELIEVABLY CRUEL.
We will try again on Thursday, the Disability Advisor has tried to explain the situation to the East of England Ambulance Service, lets hope they find some compassion. Today we have to make the trip to Addenbrookes in a private ambulance to get Hubby's Baclofen pump refilled, an hour each way in an ambulance with A GRADE 4 PRESSURE SORE. We tried to get the procedure moved to Peterborough but again no you cant play with our toys.


Monday, 14 May 2012

Dads Funeral Week

Well this week on Thursday Dad's body will be taken back to his beloved Somerset from where his half of my family hale. All of his immediate family will be there, to say their fond farewells, with one notable exception ME.  Hubby is too sick to travel all that way, no one appropriate has offered to take care of him so that I can go. I have done what I can to help with the arrangements from my living room incarceration.  No word as yet regarding a hospital admission to get Hubby's pressure sore sorted, should get some feedback soon I guess.

Our GP very kindly visited me at home re my bad back, which is still killing me by the way. Apparently they don't do x-ray checks on bad backs, you are supposed to live with it and get addicted to lots of painkillers instead. Not what she actually said by the way, she wouldn't of course , but the result nether-the-less. Something is definitely wrong with my back and I want to know what I am dealing with. So we will use some of our hard saved put a side money and pay for a private scan  as soon as I can arrange for someone to look after  Hubby so that I can take care of myself for a change.

Still no word from the local PCT regarding carer provision for Hubby. That's 10 months now that I have been struggling on solo. I think I am going to have to make an official complaint, as they have a duty of care for Hubby that they are not taking care of. Expecting the complaint to be a total waste of time, but luckily for them I do not have the energy any more to make them look like complete [substitute rude word of choice] by going public in the media re their illegal failures.

Hubby is really struggling at the moment with the pain, stomach spasms, he had a nose bleed this morning which I hope is not an indication that something else is now going on. He is still sat in a wheelchair that makes his pressure sore worse,  new one on the way but still 5 weeks away. Having problems with his alternating pressure mattress  as it sets off painful leg and stomach spasms. So life continues to be very difficult for both of us.

We had an unwelcome diversion yesterday, one of the twitter users that I follow, is in Addenbrookes hospital having a very serious colon operation. She awoke from her op to find out that someone had given her a drug that she is known to be allergic to, she was wearing a wrist band at the time saying so as well. She was shouting from her account for help. Anyway her loyal followers went into action,situation was sorted by two of them making sure the operations matron got involved. Unfortunately another case of medical staff not listening to their expert patient, she has had Crohns disease for over 15 years and knows what works for her and what does not. Stories coming out of the NHS at the moment are very scary to us that have to use the service on a regular basis.

Sunday, 6 May 2012

MAY: Dark, Soggy and Wet a bit like life really.

Took Hubby to RNOH Stanmore on Friday. Private high needs ambulance crew were great, took the time to politely listen to my pre briefing and this then meant things went pretty smoothly. He had an MRI scan on his back and then a consultation with his consultant. Bloods were taken to try and determine why he is getting fever like shivers and increases in spasm activity. Find out results next week some time.

Got word today that Dad, is very poorly and not expected to with us for very much longer, 1-2 weeks estimated. Still no ad hoc carers provided so that I can visit, that the health care system in the UK today, no one gives a shit.

My Health:
I am bit concerned about my own health as for the last 4 days my lower back has been killing me. Going to try and get the GP to send me for an x-ray to rule out anything serious. Very painful for me moving Hubby about.

Dept. of Health asking for feedback again:

There is a group at the DoH that is looking at the future (2014+) of giving people who qualify for continuing NHS provided health care a personal budget. Obviously pros and cons to this. I can only say what we have at present, is not working for us, this is what I put to them , 

Dear Team,

While I am not in your target audience to read this discussion paper on the possible future of personal health budgets to those who qualify for continuing health care provision. I am the wife and main carer for a spinally injured man who qualified for continuing health care in Oct 2009 to be provided in his own home. Our story can be read at summary in Oct ’11 entry.

The system as it stands is not working for us.

1.      My first problem with the system is that all the patients go through a rigorous screening program to ensure that their need is on-going nursing / medical care, but then the system, provides them with minimally trained carers on or near the minimum wage.
2.      That the person at the PCT in charge of ensuring that the care is provided has no incentive to ensure that the care provided is appropriate, adequate, or timely. Instead the incentive for career progression is getting the cheapest option that they can get away with.
3.      Since qualifying for NHS provided care my husband has received sporadic care provision from care agencies more concerned about their profits rather than providing appropriately qualified staff.    
4.      Our most recent gap in coverage , no carers provided since July 2011, new agency named in November 2011, by Feb had come up with only 2 possible male candidates, one lived over 50 miles away the other got another job by the time they moved to secure tenure. Meanwhile I have been left with absolutely no support to care for my husband and now since November I have been begging for some respite care so that I can visit my dying father (1-2 weeks left to live now).
5.      I have been unable to work since 2009 because of the failure of the current system, I have lost over £150k in lost earnings, not to mention lost opportunities to enhance my career.

So I write this to you , to remind all that there are real people out there needing some real positive changes to the system as it is not working at the present.