Diagnosed 5 months ago


#1
Hello everybody, Not been on here for a while, hope you all keeping as well as possible. I was trying to find out something for my OH as he is the PWP.
Although my OH see's a private neuro every three months (had 3 visits to him now) and this neuro prescribes his medication (well sends a letter to my OH's GP with what he wants my OH to be prescribed) then the actual presciption is given by his GP and dispensed from his surgerys in house pharmacy.
My concern is my husband has had no offer of anything from his GP surgery, no parkinson's nurse, no social help offered, no physio? is this the norm? or has he been offered nothing because he has a private neuro? My husband is left high and dry, his neuro is a 3hour drive from home, although he can be reached by email through his secretary if need be. I would feel a lot happier if there was some local help available for my OH, or maybe I am totally wrong and he's just not entitled to any? any advice would be most welcome, love hols x

#2
Hi Hols (if I may be so bold!)

My 81 year old mum is the one with PD, and I find that her GP relies on my 'expertise', rather than having any knowledge of his own on the subject! He gets a summary from the neuro each time my mum has an appointment (currently every 6 months), but I usually 'jump the gun' if there are medication changes and do my own note to the doctor the next day, telling him what's been agreed by the neuro, and asking for it asap! Fortunately, he's very trusting, because sometimes it takes a month before he gets the official request to dispense a different med or dose!

My mum is fortunate to live in a large town which still has a well-equipped NHS hospital, so she doesn't have to go far to see her neuro. But we only found out that a Parkinsons Nurse existed when the neuro copied her in on the letter sent to mum after a regular appointment with him. No matter, now that we know, I can say that the Nurse is excellent and has been a life-saver during the last 12 months! The GP should be able to tell you if there is a local Parkinsons Nurse (and if he/she doesn't know, then they should jolly well find out!!). If there is a Nurse then she/he can help with info on physio.

A call to the local social services will get things moving if you need any kind of other help at all - our local social services team were able to send someone who assessed my mum for help with things like extra grab handles for the stairs and bath - it was all quite quick and efficient and didn't need any referral from doctor or neuro.

Hope this helps.

#3
Thank you so much for that information, its a great help. I will contact the surgery in the morning. I was given an email address for a Parkinsons nurse at our nearest hospital (got that from PUK) but I sent a email over a week ago and have had no response??? It just seems as if he has been left to fend for himself, Its nice to hear that your Mum is getting well looked after. Thanks again, will keep you posted love hols x

#4
Hi Hollytree

You highlight an important deficiency in the process of diagnosis. Being diagnosed should trigger a series of interventions; GP, PD nurse, occupational therapy, physio, social services and I think crucially psychological help. Diagnosis is a very traumatic experience and the last thing you want is to feel abandoned ("I've just told you something that has changed your life forever and left a dagger hanging over you...see you in 6 months!").

Diagnosis of PD has happened over 120,000 times in this country, why hasn't anyone learnt to make it better? I've never been asked how was the process for you.

My gripe now is that I've seemingly used up my NHS tokens. After receiving invaluable help from OT and physio I'm no longer receiving help. I think the NHS misunderstands the chronic, progressive nature of PD; it has a short term model of treatment it is trying to apply to a long term problem. Plus, the lack of provision for emotionally coping with a disease is shocking. A disease is a problem only because it affects us psychologically

dr jonny

#5
Thanks Dr Jonny,
I seem to remember when I told his GP we had decided to go private (only due to the 3month NHS wait)she said she did not want him to have to go without the other things i.e. physio etc. I did not really know what she meant at the time, all that was our minds was to get a diagnosis as to why he was so poorly.

Now 5months on I think so what happens now? do we just plod off to see to private neuro every 3 months to have him checked out and have his meds altered, and that's it?

My husband and I are full time carer's for his brother who is mentally handicapped.
He has lived with us for 15yrs, and we have never asked for any help from anywhere until 2 years ago (he's 57 now) so the authorities have got off very lightly there.

We were just told his respite is to be cut to 3.5 weeks a year!!!
What really annoys me is that they stopped my husband's carer's allowance when he reached 65, just when it was most needed.

I had a break down a few years back, and I am trying to wean myself off my meds so I can take care of my husband and his brother, i need to start driving again. No one receives carer's payment for my husband or his brother!!! I can't as I am on ESA, so hence doing everything with the help of my family to get off my meds and off ESA so I can keep everyone strong and positive.

Why is it not realised its not about the money its the quality of life it enables you to have, the stress in my home is visable it is like a smoke screen, a home just waiting to explode.

Dr Jonny I am so sorry, please accept my apologies from moving away from the orignal discussion, i did'nt intend to, but its good to have a groan, oh such is life LOL love hols xxxxx

#6
No problem Hols. I initially went private with a NHS consultant because of the waiting time but then I transferred back to the NHS for confirmation of diagnosis and treatment.

I'm unsure how to sort out the various threads you describe but you maybe could contact Parkinson's UK or one of their Information Support Workers.

Good luck with everything

dr jonny