Multiple Sclerosis

1
Multiple Sclerosis

• Nice Guidelines
• How does this impact the person with MS.

2
Aims of the Workshop.

• Nice Guidelines The Key Points.
• What will the guidelines mean to my team and
  patients?
• What local services are available to deliver the
  guidelines?
• How can you access these services?
• How can you and PWMS influence delivery of these
  services?
• Therapies available.
• Outline of MS Specialist Nurse Service.

3
Six Key Messages

• Specialised Service
• Neurologist
• Specialist Neurological Rehabilitation services.
• Access when PWMS need it. (relapse/new symptoms)
• Rapid Diagnosis
• Referral to specialist Neurologist.
• Referred within an audited time. (? Time frame)
• Diagnosis within an audited time 6 weeks!
• Is this achievable?

4
Six Key Messages

• 3. Seamless Service
• Local health organisations agree and publish
  protocols for sharing and transferring
  responsibility and information about PWMS.
• Seamless service from individuals perspective.
• 4. Responsive Service
• ALL healthcare professionals would recognise and
  respond to the varying and unique needs of PWMS.
• The PWMS should be involved actively in all
  decisions and actions.

5
Six Key Messages

• 5. Thorough problem assessment
• Health Service professionals in regular contact
  with PWMS, should have a systematic way to detect
  hidden problems with are contributing to their
  clinical situation.
• For example fatigue, depression, cognitive
  impairment, impaired sexual function, bladder
  function etc.
• 6. Self Referral
• PWMS should be informed how to make contact with
  the service if circumstances change i.e.,
  relapse/progression.
• Single point of access. i.e. MS Specialist Nurse.
  
• PWMS should be given guidance on when such
  contact is appropriate.

6
What will guidelines mean to the team and PWMS?

• Guidelines used as tool for best practice.
• Recognised national standards.
• Negotiation Tool for implementing services.
• Ensuring responsibility with all professionals.
• Referral guide to appropriate service.
• Autonomy and self management.
• Holistic approach used for PWMS.

7
What Approach do we use?

• Establish if PWMS is currently under the care of
  a neurologist annual review is a minimum/Self
  Referral.
• Ensure that PWMS is not discharged from service,
  unless at request of PWMS.
• Appropriate referral.
• Provide reason for referral and all appropriate
  medical history/medication etc.
• Comprehensive assessment, to establish baseline.
• PWMS and professionals working towards common
  agreed goals.
• Using a common therapeutic approach.

8
Who is responsible???

• EVERY PERSON WHO COMES IN CONTACT WITH A PERSON
  WITH MULTIPLE SCLEROSIS.

9
LOCAL RESOURCES AVAILABLE

• Neurologist
• GP
• Practice Nurse
• District Nurse
• MS Specialist Nurse
• Specialist Neuro Rehabilitation Service
• Dietician

• Adult Care Services
• MS Society
• Continence Services
• Pain Management
• Psychologists
• Palliative care team
• Chiropody/podiatry
• Ophthalmology

10
Why refer on?

• Evidence of relapse or general deterioration.
• Distress/discomfort being experienced.
• Risk of direct harm.
• Risk of secondary complications associated with
  delay.
• Persons right to have regular access to
  specialist Neurological Rehabilitation service.

11
How can you access these services?

• NEVER assume that another discipline will make
  the referral.
• Single Assessment Process history of access to
  other services.
• Nice Guidelines appropriate referral.
• If in doubt contact MS Specialist Nurse.

12
Treatments

• Relapse Management
• Methylprednisolone IV 500mgs 5 Days
• 1 Gram
  3 Days
• Oral Prednisolone 500-2gms Daily for 3-5 days.
• To be given no more than 3 times per year.
• If significant refer to Rehabilitation service if
  not inpatient.

13
Disease Modifying Therapies

• Risk Share Scheme.
• Not Postcode Lottery.
• Identified prescribing centres
• Royal Free Hospital
• The National hospital for neurology and
  neurosurgery
• Luton and Dunstable (new)
• Strict Criteria.

• 2 Significant relapses in 2 years
• Relapsing Remitting
• Secondary Progressive with relapses
• EDSS- Expanded Disability Status Score
• 0-6.5 Eligible
• 7 Treatment discontinued.

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Disease Modifying Therapies

• Treatments available
• Copaxone S/C Daily
• Betaferon S/C Alt. Days
• Rebif S/C 3 Times per week
• Avonex I/M Weekly

• Considerations
• High Cost 6-10,000 PA
• Management of patient expectations.
• Side Effects
• Compliance
• ? Long Term efficacy.

15
Unlicensed/Trial Treatments.

• Azathioprine
• Mitoxantrone (cardio toxic)
• Goat Serum
• Antigren
• Campath
• Low Dose Naltroxone

16
Considerations when reviewing a PWMS- if changes
in condition.

• Is it due to an unrelated disease?
• not all symptoms can be attributed to MS!
• Is it due to an incidental infection?
• Urinary tract infection, wound, chest.
• Is it due to a relapse of MS?
• Does this require further management
  Sensory/Motor
• Is it part of a gradual progression?
• Management of Patient expectations and
  appropriate referral onwards.

17
MS Specialist Nurse Service.

• Advice
• Support
• Self Referral
• Relapse Management
• Signpost
• MDT
• Research

• Symptom Management
• DMT
• Education
• Champion for PWMS

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Practice Nurse
MS Society
GP
Continence Service
Palliative Care
Family/Carers
Employers
Hospital
THE MS NURSE THE PERSON WITH MS
Pain Team
Physio
SALT
Rehab Unit
Residential Homes
Dietician
ACS
O.T
Psychologist
Neurologist
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Contact Details

• Lorraine Lenehan
• MS Specialist Nurse,
• Holywell Rehab Unit
• St. Albans City Hospital,
• Waverley Road,
• St. Albans
• Herts AL3 5PN Tel [phone]
• Mob 07887
  926 731

20
Thank You.