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.