Developing MS Services

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Developing MS Services

• Lessons from a three-year evaluation

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Alison While Angus Forbes

• MS Society Nurse Funded programme summary of
  findings update

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Key findings

• Host organisation data.
• Post-holder data.
• Patient questionnaire data
• Process
• Outcome

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Host organisation data (n24)- Key findings
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Different types of site

• Type of host service
• General neurology (n7)
• Community rehabilitation (n9)
• Palliative care (n3)
• Specialist MS (n2)
• Host service different (team size, starting
  point, potential demand, level of service
  development)
• Challenged (n10)
• All-rounder (n8)
• Focussed (n6)

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Overall percentage of standards for health care
achieved

• Intervention sites improved by 20 in first 12
  months and 10 in the second 12 months. The
  control sites showed a 4 improvement.
• The general neurology sites and the community
  rehabilitation sites had achieved 56 of the
  standards at baseline. They improved by 16 and
  19 respectively.
• Specialist neurology sites improved by 7 but
  from a high starting point (67).
• The palliative care sites had the lowest starting
  point achieving only 40 of standards at baseline
  but also showed the greatest improvement.

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Variations in focus of sites were reflected in
standard achievement.

• Specialist and general neurology sites performed
  better in relation to diagnostic standards,
  achieving 90 of the standards compared to 74
  in community rehabilitation and 50 in palliative
  care sites.
• A similar level of performance was observed
  across sites for the minimal disability phase.
• Community rehabilitation sites achieved the
  highest level of standards (90) for the moderate
  disability phase compared to the neurology sites
  (80) and palliative care sites (60).
• Palliative care and community rehabilitation
  sites achieved the highest level of standards for
  severe disability (80) compared to general(75)
  and specialist neurology sites (40).

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Percentage of standardsfor - core standards
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Key messages

• Overall improvement in standards in health care
  in areas with MS specialist.
• Different types of site performed better in
  different areas reflecting the nature of service.
• Standard attainment levelled off after the first
  12 months.
• Some sites did not improve or showed slight
  decline.
• Post-holders seem to have been a catalyst to
  enable sites to develop.

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Post-holder data (n22)- Key findings
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Different dimensions of the specialist MS role.

• The development of the post (Forming, Storming,
  Norming)
• The focus of the post in relation to the medical
  and social models of disability.
• Whether the post-holder was a novice or an expert
  reflected in the level and amount experience and
  qualifications they had.
• The distinction between direct and indirect care.
• Whether posts were (neurology) hospital or
  community focussed.

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Key domains within the role

• Physical assessment and care.
• Psychological assessment care.
• Social assessment and care.
• Co-ordination and management of care.
• Specialist MS assessment intervention.
• Education support.
• Research audit.

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Physical care e.g. fatigue
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Psychological management e.g. depressed carer
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Social assessment e.g. employment problems
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Developments led by post-holders(in order of
frequency)

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• New clinic
• MS group or network
• Promoted MS nurse role
• Undertaken an audit
• Care pathway for MS
• Strategy to encouraged user involvement
• Continence service or care
• Professional education programmes
• Relapse management service (e.g. access to
  steroids)
• Inter-agency /disciplinary developments
• Secured additional resources for service
• Services for carers
• Service organisational policies
• Information resources

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Caseload change baseline to follow up Mean 244
(SD, 243)Range -14 -774

• Most viewed caseloads as too large but
  manageable.
• Most post-holders did not discharge patients from
  their caseload, suggesting that once a patient is
  referred they remained within the care system.

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Factors that hinder care (themes)

• External resources difficulty of other services
  accessibility of other services.
• Internal resources time caseload demands
  geographical area administrative duties and lack
  of admin support lack of MS services
  developmental work.
• Organisational resources access to internet and
  IT access to equipment reduced clinic space.
  
• Professional resources lack of counselling
  skills

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Patient questionnaire data (n616)- Key findings
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The process of care (contact with post-holder)

• 230 (78) of participants had contact with
  post-holder, although the level of contact varied
  between sites.
• Patients in the moderate and severe disease
  impact groups highest level of contact.
• The frequency of contact was significantly higher
  in the neurology sites. Rehabilitation
  post-holders had more domiciliary contact
  neurology had more hospital clinic contact.
• Participants in the severe disease impact group
  were more likely to be seen at home.
• Participants seen at home showed a significant
  decline in the FAMS mobility scale.
• Once participants had been in contact, contact
  was likely to be sustained.

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The process of care (patients experience of MS
nurse contact)
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Type of interventions experienced (n165 at 12
months)
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Helpfulness of interventions
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Meeting nurse was helpful

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Nurse helpful in understanding MS

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Nurse has made everyday life easier

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MS nurse has helped me accept my condition

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MS nurse has helped family/carers

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The process of care (impact of post-holders on
care provision and quality)
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Information

• Key findings
• More information provided in intervention site.
• Overall helpfulness of information improved in
  the intervention sites.
• Some of the observed effect was attributable to
  a decline in the control group.

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Care quality

• Key findings
• Improvement in the availability of contact person
  and being able to get help in an emergency.
• Improvement in the level to which people felt
  involved in their care.
• Reduction in the numbers of people who felt their
  health service could be improved.
• No improvements in relation to a named
  professional coordinating care
  and in the overall level of support
  they experienced.

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Outcome (Patients experience of MS nurse
contact)
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MS related complications

• Key findings
• Improvement seen in incidence of pressure sores
  (no improvement in other complications).
• Severity of problems for continence and fatigue
  were higher in the intervention group.

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Disease related quality of life (physical,
psychosocial symptoms.)

• Key findings
• Overall no significant improvements were observed
  with quality of life (QoL) measures (SF36, FAMS,
  MSIS-29).
• Overall there was a deterioration in the physical
  outcome measures, with some scales showing a
  significantly higher degree of worsening in the
  intervention groups (SF36, role physical
  physical functioning).
• No significant differences were observed in any
  of the psychosocial outcomes.
• Significant differences were found in symptom
  related outcomes with symptoms showing more
  deterioration in the intervention groups (SF36,
  bodily pain, energy and vitality general health
  perception).

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Psychological well beingrelapsing/remitting who
had a relapse
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Key messages (1)

• More information provided in intervention sites
  compared to control and the information was found
  to be more helpful.
• No observed impact on the accessibility of MS
  services or professionals.
• Improvements were observed in the quality of care
  provided in the intervention sites compared to
  the control.
• Limited improvement in MS related complications
  but patients seeing nurse had greater severity of
  complications and found support more helpful
  compared to control.

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Key messages (2)

• No improvement in general or MS related quality
  of life observed, but patients in contact with
  post-holders experienced significantly higher
  levels of disease impact.
• The positive findings observed tended to be
  stronger when post-holder contact was included in
  the model.
• Some psychological benefit for those in the
  relapsing/remitting group who had a relapse.

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Alison While Angus Forbes

• Models and style of practice.

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The interface between service types

• MS services (generic and specialist)
• General neurology
• Community rehabilitation
• Specialist neurology
• Palliative care
• Social disability model
• Generic care providers
• Primary care
• Social care provision
• Voluntary services
• National systems (e.g. Government MS Society)

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Presently a lack of integration between different
service types

• Inequitable ad hoc provision nationally.
• Area of focus regional versus district.
• Motivation or interest of professionals (MS
  champion).
• Different philosophies of care (medicalsocial
  models).
• Low prevalence of MS (primary and social care).
• A blurring of roles (although this is often out
  of necessity).

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Neurology service
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An Integrated Model
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A blend of services that transcending the social
and medical models.Managing MS the disease and
supporting the individual and their family in
adapting to life when MS becomes a part of it.
(although these are not mutually exclusive).
Way forward?
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Conclusion recommendations

• Review of sustainability.
• Need for systematic assessment and continuity of
  care throughout trajectory for people with MS
  proactive approach essential to sustain quality
  of care.
• Service needs to adopt a population perspective
  (equity, networking, collective needs,
  databases).

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Recommendation for future research

• The development and evaluation of different care
  programmes to target psychosocial issues.
• Exploration of factors which may aid coping,
  adaptation and acceptance in relation to MS.
• Exploration of continuity of care within and
  between care systems.
• Exploration of interface between continuing,
  rehabilitative and palliative care.