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

Month 10 - Frustrations

José continues to gain strength at home and is benefiting from the input of many community based health professionals. It seems almost every day there is an appointment but he still has time to get out if you want to arrange a meet up. 

I thought I'd share with you some of the challenges and frustrations we face living with a disability. There's the obvious ones around the home, and finding carers etc but here's some frustrating experiences. 

Train Travel. Before our first excursion we checked how travel with a wheelchair works at our nearest accessible station. All very easy, one simply turns up and goes. 
What about coming home? Same principle, turn up at departure station staff will assist on then call ahead to destination to arrange staff to assist with egress. 
What about after hours? Don't worry, departure station will call Lewisham (manned 24hrs) who will escort to destination. Brilliant. 
We checked again when we set off, we'd be home just before 8pm. However the train was delayed so when José arrived back it had just gone clocking off time (8pm) and there were no staff and therefore no ramp. Zofia got him off but it probably didn't pass H&S regulations! 
We tried again, again we checked. This time we were going to a Press Night and after show party in the west end so we knew we'd be late. (Hand To God, good fun but don't be fooled by the puppets, it's definitely adult entertainment). I digress. 
We got a train from Charing Cross no problem. We were met at Lewisham, upon request to continue our journey we were told this was impossible as we had not booked 24 hrs in advance. We spoke to the Customer Assistance Manager, explaining the previous advice given. He assured us that no member of staff would ever give that information as they do not escort passengers and wheelchair users can not go past Lewisham after 8pm. 
After half an hour on a cold and windy platform being called a liar, well it didn't exactly get us exchanging Christmas card details. I'm still waiting for an acknowledgement of my complaint.

Leisure Facilities. Obviously José is limited in the leisure activities available to him, but swimming is excellent therapy as the water offers support and resistance without the restrictions of gravity. But to swim José needs a pool heated as close to body temperature as possible, above 30degrees Celsius. He needs not only a hoist into the pool, but a hoist in the changing room and a bed to change on. 
Places are few and far between. But our local sports centre is, amazingly, one of them. 
So José had a tour of facilities and became a member. We called to ensure a member of staff would be available to operate the hoists, whether we needed to bring our own slings for the hoist and to enquire about a quieter time of day. 
We arrived, we paid our entrance fee and went in. In the first changing room we noticed no sling, we enquired. The staff on duty didn't know how to use the hoists, they went to find the manager. We had a closer look. Both adapted changing rooms contained hoists and changing tables, BOTH sported "DO NOT USE" stickers, dated September 2015. The manager arrived and explained that they were waiting for a part... or waiting for council funding... or hadn't put in a request for funding. His story kept changing. Again, I am waiting for my complaint to be acknowledged. 

 Next month I will share news of our holiday, and hopefully news of a bungalow.

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