Why do we bother planning stuff when every company out there seems to conspire to let you down? Tuesday 4th January we arose early to get Hubby ready for our trip to Stanmore Hospital, I had done most of the packing the night before, but still had to deflate and pack our Roho mattress. The Taxi was booked for 07:55 and of course no sign of it at the appointed hour even though it was pre-booked. I will not name the company as it would give them publicity that they do not deserve. They eventually arrive at the time of our trains departure time, so stress levels were at max when we eventually arrived at the train station.
The East Coast train staff were wonderful sorted us out another train and changed our care workers ticket with a minimum of fuss. Whilst I telephoned Addison Lee our Taxi company at the Kings Cross leg of the journey to rearrange that journey for an hour later. Our grateful thanks to them for accommodating this late change without an extra fee. We boarded the 125 diesel train and for a moment thought his wheelchair would not fit through the vestibule doors, it was a very tight squeeze but we managed in the end.
The journey for Terence in the Taxi on top of getting cold was of course very painful, London roads being full of pot holes especially after the recent spell of cold weather. Poor Taxi driver got the sharp end of Hubby’s tongue as when loading up he caught his very painful feet. All was well by the time we arrived at the Spinal Unit.
After announcing our arrival, first job as it was noon was to make sure Hubby had his urine catheter sorted, last thing we needed was an emergency Autonomic Dysreflexia attack so soon after arrival. It being lunch time on the unit we were made to wait a short while before being fetched by one of the senior nurses. One thing we noticed straight away was how friendly everyone is. We were lead to our cubicle spot by one of the rust coloured polo shirted ward carers. A grade of staff that carry out many of the functions care workers do in the community, changing sheets, toileting, feeding, clothing and generally helping the disabled in daily life type activities. Fantastic idea who ever thought that one up, leaving the nurses to concentrate on nursing duties. He helped me unpack our Roho mattress and get it on Hubby’s allocated bed. Hubby looked around this four bed bay and asked where I was going to sleep since I needed to be there for him to straighten his legs during the night. A meeting had been arranged with the senior nurse and OT so I knew we would be able to explain the situation there.
The Royal National Orthopaedic Hospital at Stanmore is currently having a new building built and I am sure that the staff would say not before time. Currently the hospital is a collection of refabs, port-a-cabins and traditional buildings linked together with drafty external corridors with slopes that are extremely unfriendly to the wheelchair user. I have seen better accommodation in the third world countries that I have worked in. The bay we were in had one sink which was out of use due to being repaired by workmen using hardboard and smelly Evostick. How staff manage to maintain cleanliness in such circumstances I do not know. Every where looked like it needed a deep clean due to wear and tear more than lack of care and attention by the staff. With things like the plumbing, utilities not working at optimum levels the staff seem to have developed a Dunkirk type spirit which I hope with the move to the new building is not lost as it was very a refreshing atmosphere to walk into as a visitor and very unusual for a NHS institution.
During our meeting we explained the situation we had got ourselves into whilst trying manage Hubby’s condition without the support we needed. The fact that Hubby needs help forcibly straightening his legs on an hourly basis during the night due to spasms and that we had not found a way to secure his legs so that he could lie on his side. The OT worked with us on the provided bed so that we could demonstrate the problem and eventually agreed that nursing staff would not be able to carry this out this procedure in a safe manner and that I would at first be needed to help. I let them know that we both know this can not carry on like this and was the main reason for our pleas for help. They got their heads together and came up with a room on another associated unit for the first two nights, where I could attend to Hubby without disturbing others during the night.
This small room with the luxury of a small flat screen TV and a recliner chair for me to snooze in.