Progress & Recognition

We left the house at 11am in an ambulance with our just in case paramedic on board. Hubby laid on his back positioned on a piece Roho cushioning to try and save his pressure sore from getting even worse. There he laid for the 1 1/2 journey feeling the pain cursing through his body with every bump and lump in the roads. His swollen feet on fire with the neuropathic pain.

We phoned the Outpatient Assessment Centre Bolsover Street, Central London, when we were about 15 minutes away and to their credit, porters were waiting for us to take us up to the first floor appointment. No sooner had we arrived and they decided to send Hubby for some more x-rays, which we found rather odd since in the preceding weeks, both MRI / CT scans had already been taken. Oh, a different angle is required with Hubby sitting up to show how his spine looks under the pressure of gravity. Okay we said, not sure how we will accomplish that for you as Hubby can not sit up unaided. Anyway we managed it, sort of, with me and the radiology nurse helping to prop him up. I love how these consultants order these tests and do not have a clue how difficult it is for the patient to actually do it.

We eventually got to see the consultant after a further wait. By this time the wound blood was starting to seep through the dressing, so I guess he got to see it at its worse. He did not seem to deliberate for long before announcing to his colleagues, that a bed needs to be found urgently for his patient. They will try and get him in early next week, or as soon as a bed becomes available. He told Hubby that he hoped he realised that it will be a prolonged hospital stay, we said what about a month , he said no maybe longer. He mentioned something about Hubby's Baclofen pump being a possible extra source of infection, that was something new to us which we will have to research what he meant.

We thought we were finished so asked the ambulance crew up, but no apparently they wanted to do  pre-admission procedures to apparently save time next week during his admission. Hubby by this time is getting very grumpy, having not being able eat, being in pain etc etc. The poor Doctor taking the bloods & details got the brunt of Hubby's displeasure, which I hope he does not take personally.

We eventually set off for home at about  5.30pm. On the way back the driver got a bit lost and we ended up on the M1 rather than A1 so Hubby had to endure an even more bumpy cross country trip. At one point I thought we were in medical trouble with Hubby as he went as pale as a white sheet, his face contorted in pain. How he managed to keep it together I do not know, as even myself able bodied as I am was in pain, feeling sick etc. We arrived back home just after 7. 8 hours since leaving home in the morning.

Can someone tell me how this is conducive to good patient care, well being. It is about time specialist units like this made use of information technology , doing consultations in conjunction with local doctors via video phones.

So now we wait for the available bed at RNOH Stanmore and another torturous journey to hospital. At least we have a few days to get everything ready.

Overall a successful but painful visit .....

The Inequalities of Life in the UK, Medical Apartheid.

Hubby is getting his 7cm x 7cm thoracic, spinal deep, grade 4 wound, dressed every day by the local nurses, who keep telling us he should be in hospital, because of the amount of bleeding, swelling . Do the Doctors not have a duty to listen to their concerns ?

It was with some irony, that I watched the news of a certain high profile elderly gentleman being hospitalised with an UTI. Most of us plebs would be thrown a bottle of antibiotics and be told to get on with it. Having said that  I am glad someone in this inequitable country is getting the medical treatment needed to stay healthy, and wish him long life and health, as I would any fellow human being.

So its been 4 months 4 days since Hubby sustained an injury to his back whilst on holiday. The wound is not progressing in a timely manner from the initial, Inflammation Stage è Proliferative èMaturation . Most documents I have read say that stages 1&2 should last no more than 2 months, where as the last stage can take months - years. While he still has the necrotic tissue in place his wound stands no chance of healing over and is a ticking time bomb for possible infection, and further destabilisation of his spine. Only reason he has not got systemically sick already is the broad spectrum antibiotics he is taking. 


There will be no surprise to many readers of this piece, that there is Medical Apartheid in the UK. If you have money you get treated straight away, if not they leave you as long as they think they can get away with , gambling  that you don't get too sick to treat, kind of hoping that you die so problem goes away, or fire fight as you have to go into hospital under emergency rather than urgent conditions. Do not let anyone fool you , your hospital admission unless you are in A&E and at deaths door today, is based firstly on how many spare beds, surgeon schedules, not on whether you have an urgent clinical need to be medically sorted. 


As I said its a gamble taken by the admissions people who do not always know how ill you are, what effects the delay will have on your long term life expectancy or quality of life. One might cynically  ask , and do they care? probably not. There will be no personal accountability for the decisions that they make. 


Make a complaint , be prepared to receive a letter that bears no relation to the reality that you went through, no proper investigation, no root cause analysis, just trite politicking. Remember the NHS is not a learning organisation, in the management organisation meaning of the word , it repeats and repeats the same mistakes over and over again. One life lost or ruined is one too many in my book.


So all I can ask is please do not play Russian Roulette with my Hubby's life, I like having him around. One family funeral is enough this year for anyone. 

5 days on quite obvious no one gives a shit

The real story of caring today and the real pain of being on a NHS waiting list.

It's Saturday, spent all week waiting for the calls from the medical people who have the power to change our situation. But no we are still here in the same bad position.

I have spent most of the day after getting hubby up at 8am this morning trying to rearrange his feet, trying to make him a little more comfortable. Sitting watching him, as his left hip spasms so bad that he hangs onto his wheelchair with his right arm as if riding a bucking bronco ride, trying to hang on until it subsides or I lift him again to try and make him comfortable. But still no one is listening I watch his face the pain etched across it, and jump out of my skin as he shouts in pain and his startle at the sudden start of the spasms again.

I dare not complain of my many aches and pains, as his are 100 fold mine. Just praying my body holds out long enough to see him through this. This week I had to give up another chance of getting back to work because we have no carers.

Monday I will try and get him to the local hospital for an ultrasound scan of his bladder, maybe that might kick start some much needed help. I hear him shouting in pain again got to go and help him. See you all laters ....