I received an email and a link to a video from Keith today. As you will see his experience of the NHS has been mixed. Unfortunately this is often the case for people with less common illnesses. It illustrates that we still have a lot to learn. Nevertheless his experience has some good elements and his story is very important. Please have a look at the video using THIS LINK.
Morning Steve Very mixed relationship with the NHS. GP is great and really have him to thank for getting a true diagnosis. My primary care team brilliant. Can contact anytime open appointment and always at end of phone for help and problems. Headed up by a Geriatrician who specialises in Parkinson's and all variants ie PSP. They have all been great and are a credit to the NHS. My main gripe issue with the NHS is that so many are not aware of or even heard of PSP and it's very frustrating having to explain what it is time and time again. Could they not be trained. Even a block on it through all groups of staff including paramedics, nurses, A&E consultants, doctors. There could be up to 10,000 people in UK with this condition. That said all the Paramedics have been great when at the house. It must be frustrating for them. One occasion to A& E the Doctor knew what PSP was and was brilliant. Really down to her that I am still here - so in amongst the negative there are positives. Thank you everyone involved in my care - you are Stars! And come on Government, allow funding to train staff on PSP.