#NHS Thriller-Farce Update

Right, deep breath, so many things going on at the moment, or should I say not progressing as they should be, involving Hubby’s care,

MRI Scan Results

Results letter says “oedema-like marrow signal in tip of T10/11/12 spinous process with possible destruction. Likely Osteomyelitis”  does not sound good does it !

Baclofen Pump Refil.

Hubby travelled all the way to Addenbrooke's on Wednesday, despite having grade 4 pressure sore. We are lobbying for this in future to be done at consultants Peterborough clinic. We will fight them on the beaches, we will fight them ...

CT Scan.

After two abortive attempts, no ambulance supplied, got Hubby’s scan done on Thursday. Scanning unit at Peterborough were very supportive, used some initiative , did a scan of his whole thoracic spine plus upper lumbar to make sure surgeon has full picture including the new hump that has appeared on Hubby’s back. They also did a dye contrast scan . So hopefully RNOH surgeon has all the info he needs to make a speedy assessment. We now await the results. He will send for Hubby for an out patient appointment first, so another long ambulance trip for a 10 minute consultation, not happy about that. Why don’t they do stuff like that using video calls. I know they like to see / feel the patient but in this case there is more danger to Hubby travelling all that way than the value the consultant will get out of the consultation. Unless they will admit straight away.

Pain

Hubby in varying levels of pain, keeps complaining of different kinds of pain in different locations. Eg keeps getting sharp pains in his head, occasional stomach pain. His arms and shoulders are a worry, he is really concerned that he going to lose the little function he has. Neuropathic pain in his feet is bad at the moment as well. Been waking me up during the night because he keeps getting painful spasms in his right leg.

Carers

No word what so ever from the dude at the PCT in charge of getting us care provision.  I have been told he is breaking the law not getting it sorted as Hubby comes under Continuing Health Care . NHS is therefore liable to provide his carers. Meanwhile I am coming under pressure to put Hubby in a nursing home because of my own health problems with my back. I find this an incredibly stupid suggestion on lots of levels, nursing homes are not keen on taking patient on that should be in hospital, Hubby needs a specialist unit for the severely physically disabled, but I know they will try and bundle him into a dementia unit which is totally unsuitable as he is as fully mentally aware. We are going to use some of our savings to get me checked out, MOT, when I get him in hospital, will rule out any serious causes of the pain in my back and hips. I am not happy living on pain killers long term not knowing what is up. Probably a trapped nerve though.

Next Moves

Firstly get through this long weekend. After which continue to lobby GP’s &  surgeon to get Hubby into the spinal unit asap. Battle to get hubby his carers  afterwards, 1 battle at a time. 

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.

Update:

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 6^th – 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.

WHEN WILL THIS FARCE END? NHS WHEN WILL YOUR SYSTEMS PUT THE WELL BEING OF THE PATIENT FIRST? ARE YOU RUNNING THE SYSTEMS OR ARE THEY RUNNING YOU ?