It is now May 2009. Gradually his involuntary spasms and pain
became worse until we had to make the decision to return home. I knew I needed
time to organise life back in the UK and booked Hubby into a private rehab
hospital. Therefore, I packed up our life in Sydney and the flat over looking
the river that I loved, booked the plane tickets and made all the arrangements
we needed to move countries. Bad luck seems to follow Hubby and I, a week
before we were due to get on the plane it became evident that the private rehab
had decided not to take us on. I therefore started an email campaign with Stoke
Mandeville for help in our case. We arrived back in the UK in May 2009 and had
to find suitable hotel accommodation.
The UK is supposed
to be a first world country, right? With access to services laws that protect
the disabled. We had decided to settle back in Peterborough as it would be
convenient for work for me in most probably London and has good access to
Yorkshire and Birmingham. Also, some of our relatives would also only be an
hour away in Lincolnshire. You try to find a hotel in Peterborough that has a
wet room and is really wheelchair friendly. We eventually found one, well done
Premier Inn, Lincoln Road. One hotel had a disabled room with a shower over a
bath, with steps in the bathroom; one offered us use of the public changing
rooms in their leisure centre as the only accessible bathroom in the whole
hotel. We are not talking of small private hotels either, these are well known
UK counterparts of US chain hotels. Disability Access regulations are routinely
ignored in the UK and I could not seem to find anyone who seemed to care enough
to do anything about it.
As some reading
this book will know looking after someone who is severely disabled in ones own
home is a challenge, try doing it totally unsupported in a hotel room for three
months. We contacted the local services in Peterborough as technically we were
homeless for support and help. We soon found that no one gave a jot that I was
looking after a vulnerable adult with no home or support. For example, I
dragged Hubby down to the housing unit at the city council; wheeling him over
pavement surfaces that a third, world country would be ashamed. We arrived with
Hubby in agony at being shaken so violently by the uneven ground, then to be
told that the wait would be at least three hours plus the interview to see a
local housing officer. I explained that Hubby is not allowed to sit that long
due to his medical condition. We got no quarter given, just a direct phone
number and email address given, from which we got no response. So again, we had
to take matters into our own hands, we found a privately rented bungalow that
was not suitable but would give us an address from which to access services.
Now we went about getting ourselves a local doctor, district nurse and social
worker.
Our first local
doctor although being very sympathetic was not the most proactive or forceful
at getting us the specialist services that we needed. He seemed to be at a loss
when it came to talking to the specialists at Stoke Mandeville from whom we
desperately needed help.
Since a spider had
bitten, Hubby in May 2008 his condition had slowly deteriorated. Pain and
spasticity being the biggest problem. He had slowly lost the use of his left
arm and hand, his left leg hanging now like it was broken, his right so stiff
that I had problems bending it for relief and exercise. No one had explained to
us in any of the hospitals that Hubby attended that after the initial six
months to a year his body would come out of spinal shock and would start to
develop debilitating spasms, which now we know is the vein of people recovering
from incomplete tetraplegia.
September 2009 the
district nurses visited us in our temporary residence and carried out a
continuing care assessment. We had to prove that Hubby needed on going nursing
based care and not what they call social care. We passed this. This meant that
a care agency would provide up to 24 hour care without a cost to ourselves,
allowing me theoretically to return to work. Eventually in October the
appointed company started. It soon became apparent that they were not suitable
for Hubby’s needs. They had very little experience in spinal injuries and the
associated medical complications. They were also unable to deal with the manual
handling involved in taking care of Hubby. There are quite a lot of movements
for example re positioning in his chair that can not be continually carried out
using a hoist. Hubby’s spasms would slowly move him out of position and
eventually would have thrown him on the floor. His feet need constant
realigning on his footplates for the same reason. So after a meeting with the
PCT manager in charge it was decided to stand them down.
In October 2009 we
were re-housed at St Edmunds Court, so at last I had some where suitable to
shower Hubby.
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