Summary of Patients with Parkinson’s Morbidity and Mortality in South Tees- A comparison between March to September 2019 vs March to September 2020

Introduction

This project compares hospital admissions as well as location and cause of death in patients with Parkinson’s disease during the first lock down period from coronavirus (March 2020- September 2020) relative to the equivalent time period in 2019.

This data concerns South Tees NHS Foundation Trust Parkinson’s disease Service. This is a tertiary referral centre. It has a population of approximately one million. This encompasses the urban, low income formally industrial city of Middlesbrough and the town of Redcar as well as the more affluent rural North Yorkshire town of Northallerton and its surrounding villages. South Tees Parkinson’s disease Service does have patients referred in from other neighbouring trusts such as nearby Darlington, Stockton-on-Tees and Hartlepool though these trusts do have their own elderly care Service which provides some Parkinson’s disease services.

Service provision prior to lockdown

Our service comprises of two specialist movement disorder neurologists and the occasional session from a care of the elderly consultant with an interest in Parkinson’s disease, four specialist Parkinson’s disease nurses, a specialist PD pharmacist, a specialist neuro physio and occupational therapist and input from a CPN and physiotherapy assistant two sessions per week. There is a weekly complex symptoms clinic with multi-disciplinary input from consultant, physio, OT and CPN. There is a PD helpline. General neurologists also have a proportion of Parkinson’s disease patient more complex patients particularly those requiring advanced therapies or care for dementia tend to be cared for by the specialist service.

The PD service during lock down

During the first Covid lockdown in March to September 2020, all PD specialist consultants were redeployed full-time to Covid wards but maintained as much contact and support as possible with the remaining PD team and tried to proactively address emailed issues and advice and guidance to support GPs and community teams caring for PD patients. Remaining consultants in the neurology dept ran an emergency neurology service which would also serve emergency PD management for patients admitted without Covid infection or requiring urgent OP care.

Three of our four PD specialist nurses were redeployed full-time to Covid wards. The remaining PD nurse used the PD helpline and virtual clinics as a means to maintain and support PD patients to try and avoid admission and prevent deterioration. Our PT and OT were redeployed to discharge services until May 2020 when they were permitted to return to the PD service where they assisted the remaining PD specialist nurse. The PD pharmacist worked on the neurology ward though supported the remaining PD team where possible. Our physio assistant was redeployed to Covid inpatient therapies.

Between Sept and Nov 2020 the team were released from Covid duties and were able to open up PASU clinics with requisite Covid measures for face-to-face consults and restore clinics to capacity, albeit with greater distancing and increased use of telephone and video consultations.

Analysis

Data from clinical coding, PD nurses records (updated by GPs, nursing and care homes and notification from PD and community nurses in neighbouring trusts) and clinic records were used to ascertain deaths of PwP and their location. Where possible, clinical notes and electronic tests syetsms were used to verify the likely cause; in hospital this could be verified from discharge letters. In the community this was rarely the case.

The deaths known to the PD Service in South Tees in hospital (including neighbouring DGHs) and within the community in March to September 2020 (first Covid lockdown) where compared to the equivalent period in 2019. If the patient died within Covid swabbing it was not possible to conclude if the patient had Covid-19 at their time of death.

Similarly, admission data during the same periods in 2019 and 2020 were compared.

Results

PwP Deaths March to September 2019

• Records of 27 deaths (cross region)

  • 2 no information available

  • 10 died in the community (no further details available)

  • 15 in hospital

    • 8 pneumonia/sepsis

    • 4 deterioration/ end of life

    • 2 perforation/ischaemic gut

    • 1 carcinoma of the lung

PwP Deaths March to September 2020 (cross region)

• Records of 42 deaths

  • 32 died in the community ( no further details available- no positive COVID swabs in community)

  • 10 in hospital

    • 5 died from COVID ( no deaths with asymptomatic COVID)

    • 3 deterioration/end of life

    • 1 perforated bowel

    • 1 non-COVID community acquired pneumonia

PwP admissions March to September 2019 ( James Cook University Hospital only)

• 39 admission episodes recorded

  • 8 falls ( 1 fractured neck of femur, 2 orthostatic hypotension, 1 head injury)

  • 9 PEJ/PEG (8/1)

  • 4 General decline

  • 3 Drug titration (2/1) Apomorphine/duodopa

  • 3 Infective diarrhoea

  • 2 Constipation and delirium

  • 2 PD psychosis

  • 2 Reduced oral intake

  • 2 Increased care requirements

  • 2 Thrombo-embolic events (1 PE, 1 DVT)

  • 1 sleepiness

  • 1 cellulitis

• Six re-admissions (5 individuals).

  • One individual 1 admission for insertion of PEJ & 2 subsequent admissions for psychosis and clozapine titration

  • One individual decline X2

  • One individual fall followed by decline

  • One individual admission for insertionof PEJ should followed by gastrectomy for stomach carcinoma

  • One individual insertion of PEJ then dopa adjustment

PwP admissions March to September 2020 ( James Cook University Hospital only)

• 20 admission episodes recorded

  • 5 falls

  • 5 motor decline

  • 2 PEJ insertion

  • 2 Sepsis (COVID-both died)

  • 2 Shortness of breath (COVID both died)

  • 2 constipation (one with fall and #NOF)

  • 1 poor medication compliance and deterioration

  • 1 endoscopy

• Three repeat admissions

  • Noncompliance with medication followed by motor decline

  • Motor decline followed by constipation

  • Fall followed by fall

Discussion and implications

During the 2020 Covid lockdown, compared to 2019, deaths of patients known to the South Tees PD service 42 patients died as compared to 27 deaths in 2019. This is a 56% increase in known deaths.

Deaths in the community in the 2019 period comprised of 56% of the total known deaths (15/27). In 2020 only 24% of deaths of PwP were in hospital (10/42).

Of all of the deaths in 2020, it was possible to verify that 5 died from Covid (cause of death attributed to infection) and all were inpatients (12% of the total deaths in the lockdown period). None of the patients who died in the community had evidence of Covid infection (no swabs and service not informed that death was thought to be attributed to Covid).

In terms of hospital admissions, there were 39 in the 2019 period and 20 in the 2020 lockdown; a reduction of almost half. It is likely that people who would have otherwise been admitted stayed home for fear of infection or received care in the community in an effort to reduce admission need. It is not clear whether this reduction in admissions led to increased rates of deaths overall or whether increased advance planning for frail patients to try and reduce admissions during Covid led to more community deaths in the patient’s usual dwelling. Note no hospice deaths were recorded in either time frame.

In terms of what this can teach us as a service, it may be that an increased awareness and focus on reducing admissions can enable more deaths in the community. However, this should not be seen as the ultimate goal in advance planning. Some patients do not wish to die at home, perhaps due to lack of family support or relatives having their own complex needs. Patients may have high nursing requirements such as breathless patients with stridor with MSA; a proportion of whom in our experience have not wanted to die in the community but in the ward with close supervision and a round-the-clock ability to provide palliative care. Thus, we should learn how we can plan and avoid unnecessary admissions, but not deprive patients of admissions or care that would enhance their well-being or end-of-life experience and this may be dying in hospital or hospice rather than home.

Similarly, our diverse team which is highly motivated to provide multidisciplinary care for PwP was reduced to around a quarter of capacity during lockdown. Though hard to verify, the remaining team worked hard and creatively with technology to avoid admissions and maintain health in PwP despite reduced resources. Should there be further need for redeployments in future (though we fervently hop not!), it should be acknowledged that the work MDT in chronic diseases do in preventing deterioration in complex cognitions and reducing admissions is valuable and a significant contribution which may be under-regarded.

Further work which might be useful though beyond the scope of this short project might be ascertain causes of death of PwP in the community and the health and social services PwP had access to before and during the lockdown and how this may have affected their well-being.