"Neurology"

Western Sussex NHS Foundation Trust does not appear to employ a consultant neurologist with a sub-specialty in movement disorders.

Patients with Parkinson’s disease require ongoing support from a clinician with

• an updated understanding of human physiology, specifically dopamine metabolism;

• a detailed knowledge of the diversity of symptoms, particularly non-motor;

• an awareness of the mode of action for each class of drugs;

• extensive experience in disease progression;

• a willingness to refer to current research-based evidence and/or to seek advice from colleagues with experience in movement disorders;

• an ability to recognize unpredictable and often fluctuating symptoms;

• and the tolerance to communicate with patients experiencing slowness of thought processes.

My experience of a neurological consultation was quite different. I was not asked to recall a full medical history; my request for investigations to confirm the diagnosis and/or to rule out concomitant disease was declined; and NICE guidelines were disregarded.

NICE CG35 states that the choice of drug should take into account clinical and lifestyle characteristics and patient preference, after the patient has been informed of the short and long-term benefits and drawbacks of the drug classes. Without prior discussion, I was prescribed the least expensive drug, at the dose recommended for advanced disease, with the advice that a change in the regime would not be required for two years. Despite much current literature regarding drug dosage and mode of ingestion, the information I was given was incorrect.

A subsequent letter to GP referred to the absence of some of the signs of Parkinsonism, whilst omitting all mention of the symptoms I find most debilitating. The way in which the disease has affected my ability to work in paid employment was also omitted.

The outdated and potentially unsafe Parkinson’s disease guidelines, originally published by Western Sussex NHS Trust in 2000, are now displayed on the CWSCCG website to inform GPs regarding patient care.

The service provision for Parkinson’s disease, described above, was inadequate and dismissive. This approach seems likely to result in unnecessary distress for patients with movement disorders; and may negatively influence junior doctors within the neurology department, as well as the primary care providers with whom the team is in contact.

Although Western Sussex seems to prioritize an interest in neurogenetics, the NHS Trust runs general neurology clinics to include Parkinson’s disease. As such, patients need to be assured that all physicians abide by the duties of a doctor registered with the GMC - that is to keep his/her professional knowledge and skills up to date; and to recognize and work within the limits of his/her competence.

As I did not receive a response to my written concerns, it has been necessary to seek expert advice elsewhere. Other patients may be unable to do so.