I decided I really should update my blog with what has been happening recently, I apologise for not updating it sooner, I have no excuse, I’m just lazy when it comes to these things.

The biggest update is that I have finally changed care agencies, I have had issues with my agency for years but didn’t want the hassle of changing and hoped things would improve enough for me to stay with them, obviously things didn’t change so I finally decided enough was enough.

Now I didn’t go into this change blindly, I researched other agencies on Google, checked CQC reports (not particularly useful in most cases as many reports are self assessments by the agencies themselves) and just talked with people.  The research ruled out a few agencies and I ended up deciding KeyStaff looked the most promising of those left, I emailed them to ask if they would be able to take over my care package, they quickly replied and we discussed things over email before someone was sent out to visit and assess me, this was all before we were even certain that I would be allowed to change providers, they seemed very professional and helpful from the beginning so I decided this was the agency I would ask for.

At this point I had already emailed CHC to request a change of agency so I just emailed again requesting for KeyStaff to take over my package, they required a bit of nudging, but to be fair things weren’t particularly hard, they did not try to put me off and just asked for legitimate reasons from me for wanting to leave my current provider, personally I do feel that if a patient doesn’t trust an agency any more and isn’t requesting an agency which costs a lot more to fund,   it really should be an open and shut case and no more justification should be needed.  In my particular case, after doing some rough calculations, I found  KeyStaff would likely cost less than CHC were being charged for my care previously.

It took just over two months to get everything  sorted, the NHS can’t move fast there’s just too much red tape and politics, but I am now happily with KeyStaff who have continued to be very professional and shown a care for their clients and staff that is excellent.

I have no regrets about leaving Nursing Alliance and would suggest anyone who is not happy with their current care provider seek a new one, everyone deserves to be happy with the agency who are looking after the most important medical and personal needs in their lives, changing agencies doesn’t have to be stressful or difficult, even if your care is paid for by the government , remember not all agencies the same,.  Just for fun I also looked up one of Nursing Alliances Directors, if you are interested the results are here.

Most of the work to my bedroom is now finished, it took a while but there weren’t any serious problems during the process, except for my electric door which is still ongoing.  The problems with the door started with me noticing a draught, when the door was closed normally there was a visible gap at the top where the door didn’t touch the frame.  I pointed out the issue to Mears, I was told the door would seal properly using the multipoint locking mechanism, which it did, the problem with this is when the multipoint locking is engaged the electric opener doesn’t work.  You’d think this would be a pretty major issue and would be resolved quickly, but of course it’s not that simple, I did eventually get them to agree that the point of the door was for me to be able to open it in an emergency and therefore using the multipoint system really wasn’t an appropriate solution.

After a meeting with the council, Mears, the builders and some others it was decided to put on some insulation strips to fix the draught, I did point out that I really didn’t think this was the solution and that a door should close properly without needing added insulation any way, but they went ahead.  After a short time it became obvious that there was still a draught coming through the door, another meeting was arranged and it was decided to get CAP Security to take a look at the door and yet again try more insulation strips.  CAP have been out and fitted the strips but found the door does not meet the specifications for the electric opening system, it requires 3.5kg of force to close and their specifications state a maximum of 2.5kg, this means the door is unreliable and will not always open, another email followed and although it’s quite obvious to me the door is faulty and needs replacing they will send out the door fitters to see if they can alter it somehow.  This whole process is wasting DFG funds and peoples time, I’m hopeful Mears will finally admit it’s their problem and just fix it, after all they agreed to the job and arranged for the builders etc. in my opinionthe council should not have to keep chasing them up and giving them extra money.

The situation with Wheelchair Services is ongoing, the Muscular Dystrophy Campaign are still fighting for me to be allowed to have a voucher, this could then be topped up by money from charity to buy a new powered wheelchair, we have just over £3000 promised from generous charities and have found a perfect chair for £9000.  I know £9000 is expensive but it offers full recline which most chairs do not, a very smooth ride and has a joystick designed especially for people with limited motor control, it is second hand but is in great condition (I dread to think how much it would cost brand new), so for now I just have to wait some more and continue applying to charities.

I have also had one of CHC’s regular assessments to see if I still require care, as I have Duchenne you would think it would be pretty obvious I’m not suddenly going to jump out of bed and start running around, but it’s policy I suppose.  They have agreed to continue funding my care, although I’m slightly concerned as they want a meeting to see if I still require the same amount and type of care, it’s should be clear from the assessment that I do, not to mention my Mother is getting older so if anything will need more help, my condition is also going to require more care as time goes on not less, no doubt they will try to save money somehow.  I do understand the NHS is in trouble and that money needs to be saved, what I don’t like is the fact managers and Chief Executives in the NHS still get large salaries and aren’t expected to take cuts in pay or bonuses to help out, or that many people who don’t really require a high level of care, but do know how to work the system, get expensive care packages without a problem.

It almost sounds like I agree with Cameron and Lansley’s reforms from reading the above, I really don’t!  I agree changes need to be made but this should be done by streamlining processes, reducing bureaucracy and decreasing the amount of managers, the current reforms don’t address any of these issues properly, increase how much private treatment can be done using NHS resources and encourages competition (which basically means signing long term contracts with private companies to reduce costs).  That’s enough ranting about the government reforms from me, I’m no expert and there are others far more influential and powerful than me fighting against this bill, I just hope they are successful or we are all in big trouble, well everyone who can’t afford decent private health insurance that is.

I hope this post didn’t sound like even more complaining on my part, yes things are a fight but hopefully you will see some things are improving for me and maybe if I keep fighting things will improve some more, I am also trying to bring peoples attention to what disabled people deal with regularly, I am far from unique, and maybe I can encourage some others to try and get what they deserve too.

Until the next time ….