Hello and Welcome to this Blog about how José and I are learning to conquer Tetraplegia (paralysis of all four limbs). Following José'...

Month 9 - Home Again

It might be unlucky for some but for us the 13th of January was an auspicious day, as José was discharged home from hospital (again). 

José’s care is paid for by the NHS Continuing Care Group (Greenwich). To best prevent a readmission they have agreed to increase his care package and to appoint a care agency with a specialism in high level care requirements. We now have two live-in carers who will both work two weeks on, and two weeks off. These carers provide 11 hours of support a day. In addition the agency is putting together a team of ‘double-up’ carers who come in for 7 hours a day. They help with things like stretches and getting dressed and also allow the live-in carer to take a break. 

Finding people who like dogs and are willing to work right out in zone 4 (rural backwater!) seems to be a sticking point but the agency is doing a great job of finding people who have experience with spinal injuries.  Our first live-in carer has been Zofia; she’s an absolute marvel and frankly I recommend you all get one for your significant other – and José likes her too. 

Before Christmas we thought we had found a bungalow to move to, but unfortunately the purchase fell through at the end of January so it’s back to the drawing board. I’m grateful to have José with me to help with the search this time and all three of us (Zofia included) are enjoying the look on vendors faces when they find the three of us waiting on their doorstep. We’re becoming rather adept at bumping up steps, rolling up mats and moving furniture (have ramp, will travel). 

The positive thing about the recent admission to Stanmore is that in the meantime José has moved up the community rehabilitation lists and is now at the top for physio, occupational therapy, speech and language therapy etc. Consequently there have been a lot of professionals visiting over the last couple of weeks. Unfortunately the word in the community is that things like the TILT table (which allows José to stand straight and bear his own weight) and the FES bike (exercise bike) that Stanmore had recommended for José won’t be funded because his life doesn’t depend on them. They are not provided in the community either because the current demand (<20) is too low for a business case. 

This makes us ever more grateful for the fundraising efforts that so many of you have already undertaken – this equipment may not be life dependent but it will definitely be life changing. 

Once again thank you all so much for you kind messages, cards and visits; we love hearing from everyone and we love meeting up even more. 

PS - we were pleased to see this month that the money has been secured for a second air ambulance for London. Great news.

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