The lastest battle with services for Mark

Time has been marching on and I didn't realise it was so long since I updated the blog. It's a bit manic trying to get the house done. 


Mark has been getting steadily better and spending more time up and getting out and about. His pain levels haven't improved much but they haven't got any worse either. We still haven't heard about an appointment at Birmingham. 


We've been trying for some time to purchase a double bed. One that provides all the functions that Marks hospital bed provides, ie profiling, which just means the back comes up to help him sit up and at the leg end it raises the lowers his legs, but most importantly the overall bed raises up so the carers can adjust it to the right height to help him with dressing etc etc so they're not bending down. If that's not provided they won't come. A bed is classed as a piece of equipment that Mark is entitled to, however they're under no obligation to provide anything other than the skinny hospital bed he now has, which clearly doesn't do anything to help in rehabilitation back to as near as possible normal sleeping arrangements for a couple. (there is one part of me that doesn't see a problem with that, when Mark snores loudly all night hehe, times like those separate houses might be more appropriate!!) Anyway to get this piece of 'equipment' we have to go through Occupational Therapy, however we have to do all the research and work to find such a bed. When we have we're supposed to put that forward for their approval. If they don't approve they won't pay their share. Unsurprisingly when we find a reasonably priced bed with all these functions, and believe me they can get VERY expensive, we're told they wouldn't sanction our choice because it's a divan base the and portable hoist won't go under it. Fair point we said, but we are prepared at our own cost to have good solid feet put on to raise it enough for the hoist to fit under, it's only about four inches after all. At that point they decide they won't actually help us any further by organising the purchase as would normally happen, we have to apply for a Direct Payment to the value of the bed Mark is currently in. The problem is, where and who do we actually apply to for this Direct Payment as it's not normally done. At this point you can see why most people give up trying to get what they're entitled to, the system is made so b****y complicated most people just don't have the energy to keep battling for what they're entitled to.  Even our Social Worker was given the run around trying to help us she's on the 'inside'. But we wouldn't give up, after being pushed from pillar to post, with everyone we talk to saying it's someones else's responsibility we've finally sorted out which of the many grant facilities it comes through and now will probably have to fill in pages and pages of forms before it goes through, but go through it should. We might have a bed by the end of the year!! 


House. Well, we've finished trashing it, and we're working there 6 days a week ..... until a couple of days ago we were working against the clock to get it liveable by the end of May when we were due to have to move out of our little cottage. By a stroke of luck we've had an extension because the people who had booked it at the end of the month have cancelled their booking. Not good for Janet, they need the bookings, but good for us, it gives us a few more weeks to get as much finished as possible.

Mark works out how he's going to move these two big boxes

 ready for the floor to go down

Ramp into the garage and out of the back door is nearly finished

Mark supervising the floor laying

The place will look remarkably different when the floor is finished and apart from not having a kitchen we could move in if we have to.  We're hoping though that the kitchen will go in over the next 2 weeks. I'll just keep painting!!!!

Has he become a control freak at new house????

Oh yes!!  On the days he can make it there he's into everything and countermanding every decision I've made and generally talking the ears off everyone there who is supposed to be working.  Did you expect to hear anything different ... I thought not haha.

On the days he feels ok, which seems to be every other day, he's quite good. On the bad days he spends most of the day in bed. It's obvious they've not got his new meds quite right yet but another visit to Prof Richardson of the Pain Team at BRI might help that. We've asked the Doctor to make a referral, but who knows how long that will take. Still no news yet from Birmingham. He's also wearing a brace round his middle again which seems to give some support to his back and keep the serious problem at bay a little.

Carers did turn up eventually, we're back to the same 'Intake Team' provided directly from Social Services again, which is good because they are good.  I'm happy to go out early and know they'll take care of him. When I do that Janet feeds him lunch then he comes over to the house if he's able. If not he stays in bed.

House is really coming on now, we've finished all the trashing and now putting it back together in it's new form. The alterations have made a massive difference in Marks ability to get around and therefore feel comfortable for him. Got to keep him in control though, he'd spend every penny we have. We need emergency money for times when he might have to go back to hospital and they stop his benefits again. I don't know how they expect anyone with a house and bills to manage, the bills keep coming in even when he's in hospital.

On a lighter note, I had a mini break and had a night away with friends from Lefkas, Paul and Sue. I met them in Stratford on Avon and joined them on a night out at the theatre. Even a little break like that is brill so thanks and hugs to you guys, very much appreciated.

A couple of piccies of the house ....

the kitchen, other than the door way, was a good size for Mark, but the dining room was really small so by the time we put a table and chairs in there Mark couldn't move around it at all ...

now we've opened it up there's plenty of room for Mark to cook ????? 

and move around the dining area

Since those were taken all the new plastering has been done and it's started looking like a house again instead of building site. We still haven't moved on with the grant for wetroom or ramps, but intend moving in anyway and managing the best we can. No matter what peoples needs are it doesn't alter the snails pace of the 'the system'.