Today I managed to lay in a bit which I really needed, the hospital is very quiet on weekends and everyone seems much more relaxed. After my obs and ECG I headed out to the museums, typically today it was several degrees colder than it has been so I was rather cold by the time[…]
I slept very well on the Nippy 3+ only turning a couple of times, I was awake for a bit between 4 and 5 or so but that’s pretty normal even at home.
It has been about eight years since I have been well enough to travel to see my consultant at the Royal Brompton, that time I had to travel in an ambulances due to severe panic attacks, it wasn’t a pleasant experience and when there it was just a quick sleep study and back home the next day.
I received this letter in June regarding my email correspondence with Wheelchair Services and Social Services, lets be clear I did not excessively email or phone them, probably 3 or 4 phone calls and 33 emails (a lot of which were confirming I had received an email) in about 105 days. As I was unhappy[…]
After a lot of wrangling my advocate from the Muscular Dystrophy Campaign managed to get Gloucestershire Wheelchair Services to consider giving me a wheelchair voucher, this was turned down originally as my “needs may change within five years”, this was based purely the Occupational Therapist’s and Rehab Engineer’s opinions, they have no medical training and[…]
I recently made a freedom of information request to NHS Gloucestershire regarding Wheelchair Services, I wanted to try and understand how well they were doing their job, below is the response I received. Information received from NHS Gloucestershire Open Government License From the above it seems only 101 powered wheelchairs were provided in Gloucestershire last[…]
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[…]
I had a visit last week from the NHS regarding the PHB pilot, it was really just a baseline assessment, they will come back again in six months to see if anything has changed, hopefully this means I will be getting my budget soon. The man from the NHS filled out a pretty standard research[…]
A new post on Fighting for my Rights about the NHS Personal Health Budget pilot scheme.
There is currently a move to push Personal Health Budgets by the government to give patients/service users more control see this NHS page. The University of Kent, University of York, Imperial College, London and the London school of economics have joined up for a Government funded research project to assess how well PHB’s work for NHS[…]
As I mentioned, I had sent Ms.Bush an email with a few questions about the power chair they want me to have, as usual the reply (when I finally got it) wasn’t particularly helpful. My first question was about speed, I think that a 6 mp/h chair is safer than a 4 mp/h one for[…]