Good evening everyone. I have just been referred to the neurological physiotherapy unit at the Conquest Hospital for assessment on Tuesday 13th February. This is for either my Atypical Parkinson’s or Neuropathy or both.
What interests me / disappoints me / amazes me is how efficient the non-medical side of the NHS is … In the past couple of months I have had 6 non-medical referrals that have been most helpful & positively impacted on my life.
When did I last have a face to face with my GP ? I’m going to guess 18 months ago.
When was my last appointment with my Neurologist ? That was about 6 months ago. The next one has been cancelled as he has left the NHS & I no longer have an NHS Neurologist.
In the past 3 months I have been diagnosed with New Atrial Fibrillation & admitted to hospital for 2 days. Any GP or follow up of any kind by anyone ? No.
So no follow up … only medication that I assume is supposed to be a temporary fix but there is no indication that anything else will happen.
I was put on Blood thinners & Beta Blockers for the A-Fib. Of course Blood Thinners are dangerous for Parkinson’s sufferers with balance & mobility issues.
I have had a recent diagnosis of distal sensory axonal large fibre neuropathy. No one has spoken to me about it. The tests were done about 3-4 months ago & I was told by email.
Is anyone else as frustrated as I am?
it is very frustrating. The NHS in general is under terrible pressure at the moment whcih is impacting a lot on non emergency care. It’s unlikely to improve before the next election and will take years to sort it self out sadly.
Stable AF doesn’t really need follow up unless there are problems. Blood thiners are a lot less dangerous to falling patients than the risk of stroke without them but if you’re worried your GP is the person to discuss this with. With regards to your Neurologist the hospital where he was based should replace him. I’d suggest contacting his old secretary or department to find out what is happening.
sorry you’re having difficulties,
If you are near to Warrior Square or another mainline station, you might want to get your GP to refer you to the National Hospital for Neurology and Neurosurgery. I was diagnosed there and continue to travel down for my reviews even when I moved to Lincolnshire and now Norwich. They do a lot of research there and have their own brain bank. My consultant is Simon Farmer and he is great - even for non-PD issues!! As I am now at 14 years post diagnosis, I suggested a repeat of my DatScan and brain MRI. They were done at the times he asked for them to be done!! I have already seen the reports from Consultant Neuroradiologists. It appears that my PD has worsened slightly and the MRI showed dead bits of brain and have now got a diagnosis of Moderate Cerebral Small Vessel Disease.
Good afternoon Podd & Douglas … Thank you for your replies.
I had my Neurological Physiotherapy appointment today. Lasted an hour & was quite interesting. The lady doing my assessment tested me to see what movement I could & couldn’t do. I scored 26/50 … A bit disappointing, if I had known I was going to be given a score I might have done better.
I have been offered a place on a 6 week course in the gym with other Parkinson’s sufferers on a Wednesday afternoon. Bit of a waiting list so I might not get on it till March / April.
I’m not really a Gym person but I will give it a go.