Building an Innovative Service Model in South East London Sally Plumb Clinical Nurse Specialist

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Building an Innovative Service Model in South
East LondonSally Plumb Clinical Nurse
Specialist
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Why ?

• Few people with neuro-degenerative conditions
  have had access to multi-professional palliative
  care
• Some evidence to suggest PwMS have palliative
  care needs which are not adequately met
  (Addington-Hall)
• Potential silent group lost to follow-up

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Project

• MS Society funded action based research project
  to carry out
• a needs assessment / service modelling study
• design a new flagship service
• evaluate that service
• Kings College London academic Palliative Care
• Department
• Methodology based on MRC framework for evaluating
  complex interventions

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Service Modelling Stage

• PwMS and Professional Consultation to identify
  views on-
• Current service provision
• Satisfaction with services
• Perceived gaps in provision (clinical
  education)
• Accessibility of services

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People with MS - Main themes

• Loss/Changes in mobility, independence
  relationships
• Symptom issues, particularly pain
• Lack of co-ordination and continuity of care
• everything is compartmentalised. The
  carersthe health centre.the GPs.. The MS
  nursesand the hospitals. Its all these groups
  theres no intermix ! Theres no thread in
  between anything

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Main Themes

• Poor quality of clinical care general in-patient
  care, hospital transport, community care, end of
  life care
• (my husband) had one of those bladder
  infections..and he was put on a general medical
  ward, where they obviously had no clue whatsoever
  of dealing with someone who was paralysed .. I
  said what ever you do you mustnt put him in an
  armchair because he cant support his
  bodyweight..so they decided to put him in an
  armchair and he fell on the floorHe was on a
  soft dietand they used to put his food ont hose
  kind of trolley tables at the end of the bedand
  the nurse would say Hes not eaten muchhe
  cant reach it

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Main Themes for PwMS

• Information needs services and aids, benefits,
  end of life
• I want to know if it (MS) can kill you
  (laughs)if youre going to die from it. You
  know its the main thing thats been on my mind
  since Ive been told. The booklets dont tell
  you whats at the end of it
• Fighting for everything
• Always phoning ..its a constant battle

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Key Issues

• Support Needs emotional and practical
• Information Needs services, aids adaptations,
  benefits, end of life
• Symptom Control
• Care issues co-ordination, continuity, quality
  of in patient care

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Views of Health Care Professionals12 focus
groups, 5 one to one interviews

• Primary Care District Nurses
• Nursing Home Staff
• Care Homes- BHHI, Leonard Cheshire Home
• Community Therapy Teams
• Intermediate care Centres
• Neuro-rehabilitation centres

• Neurologists
• MS Nurse Specialists
• Specialist Palliative Care providers
• Community staff
• Hospice staff Cons, Nurses, Physios

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Views of Health Care Professionals

• Lack of Continuity of Care
• I can spend all day on the telephone and still
  not know who is doing what for a client
• Service Delivery -Inequality of provision
• - Lack of Access
• -Inappropriate rehabilitation goals
• People with severe disability do not fit their
  criteria, its more fast trackthey are finding
  it difficult to gain access

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Health Professionals Views

• Disease Process
• Unpredictability of the disease
• Cognitive Problems
• Symptoms e.g. spasm, bladder bowel dysfunction,
  sexual dysfunction
• Lack of Resources Therapy staff, maintenance
  therapy, psycho-social support and constantly
  changing social service staff

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Key Issues

• Consensus on perceived palliative care need
• Consensus between healthcare professionals
  working with MS and people affected by MS
• Mutual lack of knowledge about each other
  specialities
• Need for professional education and information
  exchange

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New Clinical Service

• Physical base at Kings College Hospital, London
• Work alongside the existing Palliative Care Team
• Patients in Neurology and Rehabilitation wards
• Palliative Care clinic linked to regional MS
  clinic
• Covers geographical area of South East London (6
  boroughs) diverse populations

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The Service What does it look like ?
MS nurses District nurses Hospices/ Nursing homes
Neurology Palliative care Rehabilitation
Psychosocial worker
Palliative care consultant
Palliative care nurse
Service co-ordinator
Social servicesMS Society branch welfare officers
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Aims of the service

• To provide a quality palliative care assessment
• To provide specialist welfare benefits advice and
  and bereavement support
• Liaise and act as a catalyst with local services,
  both primary and specialist teams
• To enable crisis prevention
• To develop education and support to primary and
  secondary care
• To inform future research initiatives
• To provide descriptors of good practice

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Aim of Service

• To complement rather than duplicate the work of
  existing services

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The service Referral criteria

• A palliative care assessment will be undertaken
  of anyone affected by MS or related condition if
  there are potential or existing problems with
• Pain and symptom control
• Psychosocial needs
• End-of-life decisions
• Terminal care

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Role of the Service - Direct Patient Care

• Hospital or Domicillary Visit
• Pain and Symptom control
• Breathlessness
• Nausea
• Spasm
• Bladder /Bowel
• Psycho-social Needs

• End of life decision-making
• Nutrition hydration issues
• Withdrawing /withhlding treatment
• Informed consent
• Place of care
• Terminal Care/Dying

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Role of the Service - Liaison

• Multi-agency working joint visits when possible
• Appropriate Referral
• Co-ordination where fragmentation
• Communication interprofessional and PwMS

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Role of the service Education

• Healthcare professionals
• Neurologists training program for specialist
  registrars, academic meetings
• Regional GP postgraduate teaching
• Masters in Palliative Care session
• Multi-disciplinary Special Interest Groups
• Conference presentation Local and National
• Social Health Care Study Days

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Role of the service Education 2

• People with MS, carers and the general public
• Meetings with local branches of MS Society
• Symptom Management - course for people with more
  advanced disease
• MS Society - Chat room discussions

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Summary

• Evolving Service
• Seeks information needs assessment about a
  silent population
• Promotes palliation of symptom and psychological
  distress for those with advanced disease