How do we more fully see the whole person behind the clinical diagnosis of Parkinson’s disease?

As a patient I have witnessed the need to bring together a fragmented team to create personalised medicine.

My experience of hospital and GP contacts:

• Long waits! Seeing a consultant neurologist privately – after waiting over 16 weeks for an NHS appointment.
• August 2017: Brief neurological assessment; blunt ‘you have Parkinson’s Disease’.
• Medication only offered as L-dopa and a decarboxylase inhibitor.
• No time to discuss likely impact or useful information such as: ‘you don’t have a tremor now and this is not going to occur’.
• Paying a fee of £275, with a follow-up six months later on the NHS.

Personal impact:

• Shock and horror with tears in the car park.
• No attempt to discuss the prodromal symptoms i.e. disturbed sleep with type II REM sleep disorder for the past 10 years. This disorder means there is a 50% increased chance of developing PD.
• Three years marked constipation.
• Alternatives to L-dopa.

Information available but not offered:

• The availability of the Parkinson’s nurse.
• Exercise programs for Parkinson’s such as PD Warrior (available locally).
• Information of PD support groups in the area (often offered by Parkinson’s UK).
• Psychological support including inspirational recoveries from the condition i.e. John Pepper story.

Response of the Consultant Lead for Neurology at Basingstoke hospital to local MP Damian Hinds after questioning over long waiting lists for diagnostic assessment of possible PD:

“Patients referred with possible Parkinson’s disease have often had symptoms for a protracted period prior to referral and unfortunately, at present, there is no treatment which modifies the course of the disease if it is detected at an early stage.”

Back to general practice:

A notice on the consulting room door presents “two problems only”. If you speak to anybody with Parkinson’s however, they will have multi-system complaints.

Suggestions for change:

• The offer of multidisciplinary assessment including referral to physiotherapy, support groups and Parkinson’s nurse following speedily after initial diagnosis.
• The need for a patient record that includes the various inputs different professionals.
• A needs assessment.
• Better collaboration between agencies.
• A counter for this frequently pessimistic consultant opinion.

“Hope springs eternal in the human breast” – Alexander Pope

I am reintroducing my blog today, reflecting on my personal experiences since diagnosis with PD almost 2 years ago.

I had hoped my blogs would show that the gut brain connection once uncovered would lead me to slower progression – and this has been the case. I am not yet taking L-dopa and continue to be monitored by Sylvia and John Dobbs at Kings and their micro biome research project (as detailed in previous blogs). I’m building strength with the Cambrian community Gym in Richmond which I discovered by talking to other patients. The comments above describe the gaps in knowledge about local services that I have had to find independently. The need is for integrated neurological services.