Living on the Edge of Catastrophe.
Many disabled people and their carers will recognise this state, you just about manage every day with your daily challenges, in our case inaccessible housing, inadequate equipment and of course Hubby’s ongoing medical challenges. Then something happens that threatens to tip you over the precipices of not being able to cope.
Last Tuesday we had a fairly successful reassessment of his wheelchair needs, we think the NHS may just about supply a wheelchair that stands half a chance of meeting his needs. Going to have to wait for it to be built though should get it by Christmas. Not totally convinced but will give it a chance.
So I no sooner ask our GP to write a supporting letter, explaining about Hubby’s medical need for a reclining chair because of his various blood pressure issues, pressure sore relief etc. and disaster strikes, his current wheelchair stops inclining & reclining. This happens at of course 2:30 am Friday, in the morning. So I call the out of hour’s wheelchair telephone number, no answer. Try again at 07:30 and the engineer kindly explains that out of hours is not what I understand as out of hours and what were we doing being up at that time, i.e. 02:30am. He is allowed to sleep you know. Yep he is, but we aren’t.
I telephone the wheelchair people in Ely, as soon as it gets office hours, try to explain how serious the lack of a fully functioning wheelchair is to Hubby, but get the distinct feeling that I may as well be speaking to a wall.
Their engineer turns up after 2pm, too late on a Friday afternoon to do anything to help. So he just shows me the nuts that control how far back the chair goes. He knows he can’t leave me with nothing as Hubby cannot be confined to bed when we have no safe evacuation route and Hubby would have to be taken into hospital with the potential effects.
So this has left us trying to cope with the impossible. I will try and explain, I have positioned the nut on the wheelchair so that it mimics Hubby reclining position so that he does not pass out with low BP. So to get him out of bed, I stuff cushions under the wheelchair to tip it upright as much as possible lift him into his chair which then tips back a bit the cushions not being stiff enough, making it near impossible for me to get Hubby postural straight in his chair a problem at the best of times. He then travels down our corridor me watching him like a hawk for things dangling in his wheels, places himself in his safe spot in the front room. I then lodge my shoulder against the back of his chair to lift him and it up to retrieve the cushions so he can recline. When he needs to eat, I lift him and the chair back stuffing the cushions back in place. It is heavy, it is dangerous, one wrong move and he will be out on the floor, he is partially tetraplegic remember. To get him back into bed, stuff the cushions back in, stand on the footplates to keep chair down while I bring him to the front of the chair to lift him across, then lift him quickly hoping the chair propelling back does not hit his feet or me.
What next, start the campaign on Monday to try and get the wheelchair people to order the part urgently, but expect it to come from the continent so it will be a week at least. Cancel Hubby’s hospital appointment for Wednesday where he was supposed to get his picc line removed, he has had a serious infection. We thought about getting an ambulance trolley but then remembered our lift is not big enough to take one and it is potentially dangerous for Hubby to be lying down all day, catheters, eating, drinking, pressure sores, etc. are very difficult in that position. Surprise, surprise, he needs his fully functioning wheelchair to stay safe.
Readers I stand looking out on a potential precipices, this long hard physical week looming ahead, there will be fights with the people that should be helping, there will be a lack of understanding, there will be a lot of I’m alright jack sod you.
Are our wheelchair services fit for purpose? NO
Is our disability housing fit for purpose? NO
Is there enough support for our carers? NO
Does anyone give a shit? PROBABLY NO.
Fri 25th Sept - 02:00hrs - wheelchair tilt recline fails.
- 02:10hrs- phone Bartrams out of hours - no reply
-07:15hrs- phone Bartrams out of hours - Eng says he will convey urgency.
-09:00hrs - phone Bartrams main office to explain urgency.
-14:00hrs - Bartrams Community man turns up does quick assessment and leaves.
Weekend -left to manage with no help what so ever.
Mon 28th Sept- 09:00 hrs phone Bartrams to find out part despite being urgent, only ordered on that day, not on Friday.
Mon Cancel wed hospital appointment.
Mon - Wed try various manual wheelchair options to get Hubby through all unsuitable.
Thursday told Handicare view their stock take more important that dispatch of the wheelchair part.
Wednesday declare an adult safeguarding incident to Peterborough Social Services.
Friday told you will have to manage.
Monday, chasing all day again today, no part.