Parkinson's nurses need 'definite' diagnosis of Parkinson's?


#1

I was dismayed to read on the website that PD nurses can only see patients with a ‘definite’ diagnosis of PD and wonder exactly what that means? What about people with ‘probable’ and ‘possible’ diagnoses, which seem common-place, given the apparent reluctance of many neurologists to make a confirmed diagnosis?

We’ve had a pretty difficult time the past 2 years due to my OH’s motor and cognitive difficulties which his new, excellent neurologist told us are typical of PD. A recent DaT scan has apparently confirmed this, the side most affected by dopamine loss being contralateral to the side most affected by his motor difficulties. Yet the consultant’s letter to our GP reporting the scan result says he ‘may’ have PD. Does this mean he is outside the nurse’s remit?

Whilst I appreciate the consultant may be being cautious as the “correct” diagnosis could turn out to be something other such as MSA or PSP for example, it would leave people such as this out in the cold.

Has this been an issue in practice for any other forum members?


#2

Hi Mountainair,

I’m sorry that you were dismayed by this information.

All Parkinson’s nurses are employed by the NHS. The process for accessing a nurse is different depending on where in the UK you live. Unfortunately, sometimes the nurses can only see people under specific consultants, for example neurologists but not care of the elderly doctors.

You should check with the hospital or your consultant if you can access the nurse.
Referrals are usually through a GP, consultant, physiotherapist or another health professional.

You are always welcome to ring the helpline on 0808 800 0303 and ask to speak to one of the helpline nurses.

I hope this info helps.

Best wishes,
Reah


#3

Thank you Reah. Yes I understand that and realise it is a pretty messy system and also inequitable, just as accessing reasonable care from a movement disorders specialist seems to be. I had hoped a specialist Parkinson’s nurse would be more autonomous as many nurse practitioners are in other specialist areas and thus level the playing field a little.

The neurology department at our local hospital is best described as dysfunctional and unfortunately the PD nurse is tied to that neurology department. We sought a second opinion elsewhere and are now very happy with the medical care my husband is receiving but it would be good to talk to a local specialist nurse about local issues sometimes.

The good news is that I have just discovered our local CCG is supporting the employment of a PD nurse, with pump priming funding from Parkinson’s UK, to be based either in the community or elderly care. Thank you Parkinson’s UK - I think I need to make a donation!


#4

Hi @Mountainair,

I’m glad to hear that you got a second opinion and great news regarding your local CCG. :grinning:

Please let me know if you need help with anything else.

Best wishes,
Reah