title: How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.
abstract: BACKGROUND
  Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services.
  
  
  METHODS
  The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships.
  
  
  RESULTS
  Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson's Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9-88 MND, 3-25 Parkinsonism, and 0-5 MS).
  
  
  CONCLUSIONS
  This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, Bessemer Road, London, SE5 9PJ, UK.
authors.forename: Liesbeth M
authors.initials: LM
authors.lastname: van Vliet
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, Bessemer Road, London, SE5 9PJ, UK. wei.gao@kcl.ac.uk.
authors.forename: Wei
authors.initials: W
authors.lastname: Gao
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, Bessemer Road, London, SE5 9PJ, UK.
authors.forename: Daniel
authors.initials: D
authors.lastname: DiFrancesco
authors.affiliation: Nottingham University Hospitals NHS Foundation Trust, Nottingham, UK.
authors.forename: Vincent
authors.initials: V
authors.lastname: Crosby
authors.affiliation: The University of Nottingham, Nottingham, UK.
authors.forename: Andrew
authors.initials: A
authors.lastname: Wilcock
authors.affiliation: Cardiff and Vale University Health Board, Cardiff, UK.
authors.forename: Anthony
authors.initials: A
authors.lastname: Byrne
authors.affiliation: Maurice Wohl Clinical Neuroscience Institute, King's College London, Institute of Psychiatry, Psychology & Neuroscience London, London, UK.
authors.forename: Ammar
authors.initials: A
authors.lastname: Al-Chalabi
authors.affiliation: Department of Clinical Neuroscience, King's College London, Institute of Psychiatry, Psychology & Neuroscience, London, UK.|King's College London, National Parkinson Foundation International Centre of Excellence, London, UK.
authors.forename: K Ray
authors.initials: KR
authors.lastname: Chaudhuri
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, Bessemer Road, London, SE5 9PJ, UK.|Sussex Community NHS Trust, Brighton, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Evans
authors.affiliation: King's College Hospital NHS Foundation Trust, London, UK.
authors.forename: Eli
authors.initials: E
authors.lastname: Silber
authors.affiliation: The Walton Centre NHS Foundation Trust, Liverpool, UK.
authors.forename: Carolyn
authors.initials: C
authors.lastname: Young
authors.affiliation: St Wilfrids Hospice, Eastbourne, UK.|East Sussex Healthcare NHS Trust, Eastbourne, UK.
authors.forename: Farida
authors.initials: F
authors.lastname: Malik
authors.affiliation: Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK.
authors.forename: Rachel
authors.initials: R
authors.lastname: Quibell
authors.affiliation: Department of Palliative Care, Policy and Rehabilitation, Cicely Saunders Institute, King's College London, Bessemer Road, London, SE5 9PJ, UK. irene.higginson@kcl.ac.uk.
authors.forename: Irene J
authors.initials: IJ
authors.lastname: Higginson
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D006801:Humans; D008297:Male; D019636:Neurodegenerative Diseases; D009462:Neurology / Q000458:organization & administration; D010166:Palliative Care / Q000458:organization & administration; D006113:United Kingdom
keywords: End of life care; Home; Hospice; Integrated care; Intervention; Mapping; Neurology; Palliative care; Terminal care