Setting up a nurse led, multi-disciplinary clinic for patients in the complex stage of Parkinson’s

The county of Worcestershire has a population of approximately 600,000 people, covering some 672 square miles, which is both rural and urban. This large county borders Herefordshire, Shropshire, Staffordshire, West Midlands, , Warwickshire, and Gloucestershire (1). 19% of the population of Worcestershire is over the age of 65yrs and by 2030 the population of those aged 75-79 years is set to rise by 21%, 80-84 years by 57% and 85 years+ by 50% (2). The prevalence of Parkinson’s increases with age as demonstrated by the Parkinson’s UK report on incidence and prevalence: “Prevalence increases sharply with age with the prevalence for those aged 80-84 being 1,696 per 100,000 people, equivalent to around 1.7% of this age-group” (3). Healthcare provision within the county of Worcestershire is provided by three CCG’s and the challenge of meeting the needs of the escalating number of people living with Parkinson’s is apparent.

The Parkinson’s Nursing Service within Worcestershire is community based, with staff employed by Worcestershire Health and Care NHS Trust. We became a county wide service in 2011. This led to a rapid expansion in our caseload from approximately 280 to todays figure of 1150. Referral into the service is mostly via Consultant and GP colleagues although we operate an open referral system providing the criteria is met. This being the patient having a diagnosis of Parkinson’s made by a Consultant with a speciality in the area of Parkinsonism/ Movement Disorders, and the patient being registered with a Worcestershire GP- There are exceptions to this where there is no community based Parkinson’s Nurse in a neighbouring county and a patient requires a home visit. The team comprises of 3 Parkinson’s Specialist Nurses (2.7 WTE) Band 7 and 1 Parkinson’s Community Nurse (0.54 WTE) Band 5. We are supported by a dedicated admin colleague (0.7 WTE). We run county wide nurse led clinics and provide home visits for those clinically housebound patients. We support new and existing patients, so planned work as well as being responsive to the needs of patients already on the caseload –unplanned work. The ratio of staff to patient numbers is insufficient according to Parkinson’s UK recommendations (300 per WTE) (4) and this reinforces the imperative to be innovative and focused when planning service interventions.

Historically, we have seen each newly diagnosed patient for a face to face assessment with appointment duration of 60 minutes, plus additional administrative time. It was apparent that a lot of the content covered during the first appointment was repetitive from patient to patient so arguably neither time nor cost effective. The waiting list was building and we needed to be creative in meeting the needs of new patients in a timely and effective manner. Hence the creation of the New Patient Group. This group provides information, education and advice to patients and their partners when recently diagnosed with idiopathic Parkinson’s. The strength of this group is that it is multi-professional. The session is run by a Parkinson’s Specialist Nurse and there are presentations by Physiotherapy, Pharmacy, Neuropsychology and Parkinson’s Local Advisor colleagues. We also present the role of other colleagues including Occupational Therapy, Speech and Language Therapy, Continence Advisors, and Carers Worcestershire. We have run this group for in excess of 2 years and it has proved successful. Patient feedback via the family and friends tests has supported this, as has the absence of contact from or about these patients.

Building on success:

On the back of the success of this multi-disciplinary partnership we shared discussion to explore the potential of creating a Complex MDT clinic. Our rationale was to streamline thepatient experience when seeing differentmembers of the health care team, often when symptoms of this progressive, degenerative condition were causing significant difficulty, diminishing quality of life and wellbeing and increasing risk of hospital admission. In creating this clinic we were addressing three of the five recommendations from the Parkinson’s UK audit 2017. These being to develop specialised MDT working, improve communication and information sharing and improve medicines management (5). Our starting point was a meeting with the Quality Lead for the Trust who gave guidance on the necessary process and considerations. As we were not asking for more money, establishing the clinic within our present staff resource, we were able to proceed quite promptly and easily. We were charged with piloting the clinic to glean evidence of it’s efficiency and effectiveness. This initiative coincided with our Specialist Clincal Pharmacist undertaking his PhD with the clinic as his subject matter which will be most useful in analysis of outcomes.

Setting up:

We decided the clinics would initially be held on a monthly basis, each morning prior to the afternoon New Patient Group. This was ideal as we knew we had staff availability and clinic space. We created a criteria for clinic as follows: The patient would be in the complex stage of Parkinson’s, with a Hoehn Yahr of 3-4, (6), live within the Redditch and Bromsgrove area and not have a diagnosis of dementia. Our Quality Lead advised we should request permission from the patient to be contacted by the Patient Experience Manager prior to and following the clinic appointment to establish their thoughts and opinions of the service. We were also required to ask permission for our pharmacy colleague to access GP records. Each month a PSN meets with our physiotherapy colleague to decide who will attend the clinic. This works well as we explore the issues of concern and actions taken thus far. We can also expedite actions prior to clinic for example liaison with other health and social care professionals to reduce delay.

Clinic in action:

We allow an hour for each patient so we see 4 patients in each clinic. Prior to seeing the patient, we spend 5 minutes as a team reading pertinent notes/ letters to ensure we’re up to speed with why the patient has been invited to attend and actions taken. When the patient and partner are settled the PSN welcomes them and each member of the team introduces themselves. The PSN completes a multifactorial, comprehensive review tool to clearly establish the following:

• When diagnosed and specific diagnosis.
• Comorbidities.
• All Consultants/ services involved.
• When last seen by Consultant/ outcome/ when is the next review due.
• What are the patient and partner concerns?
• How does the patient present?- MDT observation.
• Medication regime with specific doses/ timings/ support systems/ concordance.
• Previous alterations/ outcomes.
• Side effects of dopaminergic regime: including somnolence, sudden onset of sleep, night time sleep disturbance, nausea, vomiting, dizziness, impulsive behaviour, hallucinations, cognitive challenges, ankle oedema if on agonists, dyskinesia and on/ off fluctuations.
• Blood pressure is checked both sitting and standing after 1/2/3 mins.
• UPDRS part 2 activities of daily living.
• Bowel/ bladder concerns.
• Social circumstance/ driving/ blue badge/ benefit status/ Carer burden.

During the course of these discussions the patient and carer are encouraged to ask questions, thoroughly supporting their involvement.

On completion of the PSN review the occupational therapist, physiotherapist, pharmacist and neuropsychologist ask any service specific questions not covered in PSN review.

We then collectively “sum up” by reflecting on discussions and negotiate a forward plan with the patient and carer. A letter is dictated by the PSN which when typed is checked by multi-professional colleagues to ensure accuracy. This letter is sent to the Consultant, GP, patient- forming a care plan, and all health care professionals involved. We are actively looking at streamlining this within the capabilities of our shared note system (Carenotes). We have redesigned the review template to include radio button and free text options. The plan is for this template, when built, to be completed directly onto the laptop which would immediately populate a letter. This would significantly enhance speed from “time seen to letter sent”. It would also allow robust and rich data collection to inform service planning as we move forwards.

Examples of outcomes:

• Alterations to medication regimes- escalation/ de-prescribe.
• Consideration of advance therapies.
• Consideration of anticholinergic burden.
• Consideration of comorbidities and polypharmacy.
• Consideration of bone health.
• Maximising medication concordance.
• Exercise regime instruction/ walking aid provision/ follow up planned with rehab unit.
• Equipment needs identified/ time frame for provision decided/ follow up planned.
• Support, information and advice on anxiety and mild cognitive impairment.
• Planning for completion of anxiety and depression screen and cognitive assessment.
• Consent to refer on the other health/ social care/ partner colleagues.
• Carer support.
• Consideration of advancing care planning, including hospice support/ DNAR/ Respect.

Benefits:

The patient has one appointment for a comprehensive review of need which prevents onerous, multiple appointments thus allowing timely access to intervention. As it’s a shared forum there’s clarity and transparency in issues/ actions which enhances the patent experience and efficiency of interventions. Most importantly, the patient feels part of a fused team with themselves at the centre of decision making. The service feels secure for patients and professionals alike. We can prevent deterioration and potential admission to the acute sector by ensuring appropriate and seamless interventions.

Feedback examples:

Patient comment

“Thank you for doing this, it was so helpful seeing you all together”, “Thank you. I felt I was involved in the decisions about me, very important”, “I felt a bit nervous seeing you all but you soon helped me to relax and I’m very glad I came, my wife is too”.”This makes sense, we need support to feel connected”. “I preferred seeing everyone together, I felt like part of the team”.

Colleague feedback

“It’s so much easier being together and creating a comprehensive plan”, “The patient see’s us working as a team, they feel better supported”, “We’re learning so much from each other”. “We’re saving time for services and the patient, it just makes sense”.

Areas for consideration

• We are presently not Consultant attached and have been unable to secure Consultant presence in clinic due to resource challenges. However, our Trust is presently looking to create a Consultant for Neurological Services and we’d hope they would support our clinic.
• We are an expensive cohort of staff and ideally need to see more patients within each clinic. However, given the nature of clinic, complexity of patient presentation and comprehensive model, this may not be possible hence we would require funding for more clinic availability.
• Qualitative and quantitative data is needed to inform future service development.

In conclusion

The complex MDT clinic has provided an accessible, valuable and significantly beneficial service to patients living with the complexities of advancing Parkinson’s. It has eliminated the need for the patient to repeat themselves to each professional at numerous appointments. The plans negotiated hold the patient at the heart of decision making and the facilitation of these are fluent and prompt. Interventions have prevented further deterioration which may have resulted in admission to hospital and improved quality of life for our patients and their carers. We look forward to formal analysis of PhD and carenote data analysis. Ideally, we would aim to increase the number of clinics, and secure a Consultant lead in the near future.

References:

1. www.worcestershire.gov.uk/info/2044/research/795population_statistics_and_projections
2. www.parkinsons.org.uk/professionals/resources/excellence_network_data_dashboards
3. www.parkinsons.org.uk/professional/incidence_and_prevalence_parkinsons_uk_report
4. www.parkinsons.org.uk > scotlandnursereport
5. Parkinson’s UK Audit 2017: www.parkinsons.org.uk
6. emedicine.medscape.com.article.2172546