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Multiple Sclerosis

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

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  1. Multiple Sclerosis Nice Guidelines How does this impact the person with MS. Lorraine Lenehan, MS Specialist Nurse

  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. Lorraine Lenehan, MS Specialist Nurse

  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? Lorraine Lenehan, MS Specialist Nurse

  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. Lorraine Lenehan, MS Specialist Nurse

  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. Lorraine Lenehan, MS Specialist Nurse

  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. Lorraine Lenehan, MS Specialist Nurse

  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. Lorraine Lenehan, MS Specialist Nurse

  8. Who is responsible??? EVERY PERSON WHO COMES IN CONTACT WITH A PERSON WITH MULTIPLE SCLEROSIS. Lorraine Lenehan, MS Specialist Nurse

  9. 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

  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. Lorraine Lenehan, MS Specialist Nurse

  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. Lorraine Lenehan, 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. Lorraine Lenehan, MS Specialist Nurse

  13. 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

  14. 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

  15. Unlicensed/Trial Treatments. • Azathioprine • Mitoxantrone (cardio toxic) • Goat Serum • Antigren • Campath • Low Dose Naltroxone Lorraine Lenehan, MS Specialist Nurse

  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. Lorraine Lenehan, MS Specialist Nurse

  17. 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

  18. 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

  19. 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

  20. Thank You. Lorraine Lenehan, MS Specialist Nurse

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