Developing MS Services

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Developing MS Services

• Lessons from a three-year evaluation

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Joanna RidleyCarers Programme ManagerMichael
RitchieCarer and MS Society Regional Volunteer

• Supporting Carers
• key issues arising from the research

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Identifying as a carer

• Major barrier to accessing services
• Language has to be sensitive
• Focus on activities, not role
• Explain why carer is used

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Demographics

• Male carers
• Reflection of disease prevalence
• Double-jeopardy for mens health
• Older carers
• Own healthcare needs
• Two-way carer situation

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Training Needs

• 72 involved with lifting and handling
• Need pragmatic view to training
• Cannot apply statutory rules to lone carers
• Ambulance service involved in training
• St John Ambulance research (2000) - 80 of carers
  surveyed, not received formal training
• 63 felt that training courses should be available

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Michael Ritchie my experiences as a carer

• Stage 1 post diagnosis
• Stage 2 changes and crises
• Stage 3 current full-time role
• Stage 4 the future

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Post Diagnosis

• No follow-up
• Lack of quality information
• Lack of support
• Psychological/emotional problems
• Employment issues
• Planning for change

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Changes and Crises

• Deterioration in condition
• Making decisions
• Support from health and social care professionals
• Financial implications / benefits

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Current Role

• Organised
• Supported
• Well informed . But
• Ongoing financial concerns
• Decreasing energy levels
• Lack of suitable breaks from caring

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Professionals currently involved

• 2 carers (30 minutes daily)
• District Nurse (as required)
• Stoma Nurse (as required)
• Physio (domiciliary fortnightly)
• Reflexology (1x 6week course per year Hospice
  at Home service

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And theres more

• Speech therapist (as required)
• Wheelchair assessment specialist (as required)
• Social services care manager/OT (crisis only)
• GP (as required)
• Neurologist (not seen for 3 years)

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The Future

• Ageing
• Age related health problems
• Palliative care
• Post caring

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Dorset St John Ambulance

• Carers Workshop Initiative
• Safe Moving and handling skills
• Introduction to caring skills
• First aid skills
• Support, social skills and stress management
• Nature of MS
• Carers rights and legal issues

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Information for Carers

• Carers of people with mild/moderate disability
  not being targeted
• MS Society Carers Programme leaflets
• (Finding and Funding residential care)
• Carer Packs including local information
• ..Dont just rely on
  written information!

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Problems related to Caring

• 40 experienced anxiety and fatigue (89 for
  those from severe disability category)
• Value of sitting services (e.g. Crossroads)
• Short sessions to start off with
• Carers Special Grant
• Carers Assessment

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Help from Professionals

• Not positive findings
• Less than half offered assessment of needs
• Role of MS Nurse to signpost to other services
• Direct link to assessment and service provision
• Need to develop relationships with carers leads

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Carer Burden and QoL

• Negative term for many carers
• Contributes to feelings of guilt
• feature of carer experience
• Disruption of daily schedule
• Balancing work / parenting / social life
• Important to identify problems early to enable
  continuity

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Early Intervention

• Targeting those who dont use carer label
• Dont enforce carer identity
• Consider family support needs
• In line with approach proposed by NICE
• Bear in mind impact of treatment options

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Developing Support

• Networking and joined-up services
• Find out how best to access respite care and
  sitting services (eligibility, charges, process)
• Link up with carers centres and outreach
  services (speak at sessions, access literature,
  learn from expertise)
• Develop links with social services carers lead
• Effective signposting

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Research Priorities

• How the carer identity is adopted (triggers,
  process)
• Mapping of the trajectory to becoming a carer
• The impact of MS Nurse posts on carers
• Any suggestions?
• Development of applied research funding
  programme carers / severe disability issues

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MS Society Carers Programme

• Guidance for Carers
• Development of telephone befriending pilots
• Development of Carers Workshops
• Branch Carers Officers
• PRTC/MSS Joint hosted web site for teenagers
• Carers pages on MSS web site
• Mapping of services on a regional basis
• Formal partner of Carers Week

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Developing MS Services
Lessons from a three-year evaluation

• Thank you!