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Multiple Sclerosis. Nice Guidelines How does this impact the person with MS. 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?

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multiple sclerosis

Multiple Sclerosis

Nice Guidelines

How does this impact the person with MS.

Lorraine Lenehan, MS Specialist Nurse

aims of the workshop
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.

Lorraine Lenehan, MS Specialist Nurse

six key messages
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?

Lorraine Lenehan, MS Specialist Nurse

six key messages1
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.

Lorraine Lenehan, MS Specialist Nurse

six key messages2
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.

Lorraine Lenehan, MS Specialist Nurse

what will guidelines mean to the team and pwms
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.

Lorraine Lenehan, MS Specialist Nurse

what approach do we use
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.

Lorraine Lenehan, MS Specialist Nurse

who is responsible
Who is responsible???

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

Lorraine Lenehan, MS Specialist Nurse

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

LOCAL RESOURCES AVAILABLE

Lorraine Lenehan, MS Specialist Nurse

why refer on
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.

Lorraine Lenehan, MS Specialist Nurse

how can you access these services
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.

Lorraine Lenehan, MS Specialist Nurse

treatments
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.

Lorraine Lenehan, MS Specialist Nurse

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.

Disease Modifying Therapies

Lorraine Lenehan, MS Specialist Nurse

disease modifying therapies1
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.

Disease Modifying Therapies

Lorraine Lenehan, MS Specialist Nurse

unlicensed trial treatments
Unlicensed/Trial Treatments.
  • Azathioprine
  • Mitoxantrone (cardio toxic)
  • Goat Serum
  • Antigren
  • Campath
  • Low Dose Naltroxone

Lorraine Lenehan, MS Specialist Nurse

considerations when reviewing a pwms if changes in condition
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.

Lorraine Lenehan, MS Specialist Nurse

ms specialist nurse service
Advice

Support

Self Referral

Relapse Management

Signpost

MDT

Research

Symptom Management

DMT

Education

Champion for PWMS

MS Specialist Nurse Service.

Lorraine Lenehan, MS Specialist Nurse

slide18

MS Society

Practice

Nurse

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

Lorraine Lenehan, MS Specialist Nurse

contact details
Contact Details;
  • Lorraine Lenehan

MS Specialist Nurse,

Holywell Rehab Unit

St. Albans City Hospital,

Waverley Road,

St. Albans

Herts AL3 5PN Tel; 01727 897 193

Mob; 07887 926 731

Lorraine Lenehan, MS Specialist Nurse

thank you

Thank You.

Lorraine Lenehan, MS Specialist Nurse