Taking over a movement disorder clinic: patterns of inheritance
Altnagelvin Hospital is a district general hospital serving a population of approximately 167,975. With the prevalence of Parkinson’s disease estimated at 160/100,00 this would equate to an expected Parkinson’s disease population of 269 in our catchment area.
In Altnagelvin Hospital the movement disorder service was historically divided between a care of the elderly led clinic once a month and neurology who had a once a week dedicated service run by one consultant with three other neurologists seeing an unknown number of movement disorder patients in undifferentiated general neurology clinics.
In 2016 the neurologist covering the only dedicated weekly movement disorder clinic left the trust. In early 2017 the geriatrician running the care of the elderly service and our only Parkinson’s disease nurse specialist, in relatively quick succession, announced their plans to retire. It was against this back drop that I was asked by management to take over the Care of the Elderly Movement Disorder Service.
Having attended and gained inspiration from the Parkinson’s Academy MasterClass in June 2017 I decided to audit the current service against some key indicators in Parkinson’s disease care against national guidelines and present this to senior management with the aim of improving the service for older people with Parkinson’s disease.
I pulled 53 charts at random from the 91 patients attending the Care of the Elderly Movement Disorder Service. Two had died and five were general geriatric cases that had been coded into the incorrect clinic. This left 46 charts.
Of these 46 patients 30 (65%) were male, 16 (35%) were female. The mean age was 80 years.
Forty-two (91%) had a diagnosis of idiopathic Parkinson’s disease, of which four had an additional diagnosis of Parkinson’s disease dementia. Three had vascular parkinsonism and one had a diagnosis of essential tremor. Thirty (65%) had been investigated with a single photon emission computed tomography (SPECT) scan.
Thirty-eight patients were on Levodopa, 16 were on a MAOBI. Only one patient was on rivastigmine despite four patients having a diagnosis of Parkinson’s disease dementia. Thirty-two patients were only on one agent. The mean time patients were attending the clinic was 5.11 years with one patient attending for 18 years.
With regards to national guidelines there was no evidence in the charts of any written communication about the disease having been given. There was no documented advice around driving or about side effects of medication. There is currently no access to physiotherapy, speech and language therapy or occupational therapy at each regular review.
The cohort of patients attending the Care of the Elderly Movement Disorder Service is predominantly elderly and male. They are probably over investigated with SPECT scans. SPECT should not be used in all people with PD in place of initial clinical examination and whilst SPECT could be used to avoid the costs of treating people who do not suffer from PD the cost-effectiveness of SPECT decreases when the frequency of PD in the clinic population increases. Sixty-five percent of patients in the audit had a SPECT scan in a population with 91% prevalence of Parkinson’s disease thus greatly reducing its cost effectiveness.
No patient in the audit had a diagnosis of a Parkinson’s plus syndrome. The initial diagnosis of idiopathic Parkinson’s disease over a mean follow up of three years may be revised in up to 5% of cases. The diagnosis is mostly revised to one of the Parkinson’s plus syndromes. This means that in my group of 42 patients with a diagnosis of idiopathic Parkinson’s disease who have been attending the clinic for a mean duration of 5.11 years you could expect to find two patients with a Parkinson’s plus syndrome.
Thirty-two of the patients in my audit were being treated with a single agent. Two-year probabilities for patients with Parkinson’s disease needing another class added to their treatment are 64% for MAOBI and 20% for levodopa. This means given the average length of time these patients have been attending clinic that many of them may be under treated.
In summary, I found the patients attending the Care of the Elderly Movement Disorder Service to be over investigated and under treated with an underdiagnoses of Parkinson’s plus syndromes and Parkinson’s disease dementia.
Meeting with management and improvements to the service
My predecessor saw nine patients per clinic once a month. When I inherited the service there were 91 patients on the list for this clinic. We had 22 new referrals who had not as yet been given an appointment and 27 patients lost to follow up after the departure of the consultant neurologist who were of a suitable age to see a geriatrician-led Parkinson’s disease service. This totalled 140 patients who according to national guidelines should get reviewed every six months thus requiring 280 clinic appointments per year. If I were to continue to see nine patients per clinic this would equate to 2.59 clinics per month which we could sensibly round up to three clinics per month. I met with management and explained some of the preliminary results of my audit and suggested that a number of things needed to be done urgently to improve the service.
Firstly, the recruitment of a new Parkinson’s disease nurse specialist should be made a priority. Secondly, given the increased rate of referrals due to the vacuum created by the departure of the only neurologist running a dedicated movement disorder clinic I would need to have a weekly clinic.
The post of Parkinson’s disease nurse specialist was advertised promptly and management agreed to changes in my job plan which facilitated a weekly clinic.
Plans for the future
The trust is interviewing for the post of Parkinson’s disease nurse specialist in a few weeks’ time. This will hopefully mean someone in post earlier than we might have expected. In an effort to build upon my initial modest success of increasing the clinic appointments for patients with Parkinson’s disease by a factor of four, I have forged links with a neurologist colleague who is keen to put together a business plan for a joint Care of the Elderly and Neurology Movement Disorder Clinic with pharmacy and multidisciplinary input.
- National Collaborating Centre for Chronic Conditions. Parkinson’s disease: national clinical guideline for diagnosis and management in primary and secondary care. London: Royal College of Physicians, 2006.
- PD MED Collaborative Group. Long-term effectiveness of dopamine agonists and monoamine oxidase B inhibitors compared with levodopa as initial treatment for Parkinson’s disease (PD MED): a large, open-label, pragmatic randomised trial. Lancet. 2014; (published online June 11.)
More Parkinson's Academy Service development Projects
'The things you can't get from the books'
Parkinson's Academy, our original and longest running Academy, houses 20 years of inspirational projects, resources, and evidence for improving outcomes for people with Parkinson's. Led by co-founder and educational director Dr Peter Fletcher, the Academy has a truly collegiate feel and prides itself on delivering 'the things you can't get from books' - a practical learning model which inspires all Neurology Academy courses.