Outline: The service provided in Newcastle Roles and Responsibilities Case studies

1. Paediatric onset
Multiple Sclerosis
Nadia Conway
Roald Dahl Neurology Nurse Specialist
Great North Children's Hospital
Newcastle upon Tyne

2. Disclosures
• I have received educational and travel grants
from the following:
Merck Serono
Biogen-Idec

3. Outline of talk
 The service provided in Newcastle
 Roles and Responsibilities
 Case studies

4. Team
 Consultant Paediatric Neurologists
 Consultant Neurologist, Paediatric Lead
 Paediatric Neurology Nurse Specialist
 Adult MS Nurse, Paediatric Lead
 Neuropsychologist

5. Service in Newcastle
• Joint clinic appointment in COPD (6 monthly)
from diagnosis
• Adult MS Nurses regularly review with
Paediatric Neurology Nurses
• All patients are referred to Psychology
• Admitted to paediatric wards until they are
transitioned (up to 18 years)
• Young person’s clinic in adult OP (16-22 year
olds)

6. Roles and responsibilities: Paediatric
Neurology Nurses
 Support the education of parents and
children with a new diagnosis
 Attend joint adult / clinic appointments and
paediatric only appointments
 Provide support and advice to parents,
schools and other Healthcare
Professionals

7.  Review and monitor all patients on
treatment
 Make referrals to Psychology, Social
worker, OT/ Physio
 Attend Team around the Family (TAF)
meetings

8. Roles and responsibilities: MS Nurses
 Education regarding diagnosis &
treatment
 Prescription ordering
 Provide support and advice to Paediatric
Team
 Attend clinic appointments
 Liaison between the 2 teams

9. Things to consider
• Consent
• The family
• Education
• Access to social activities
• Safeguarding
• Support group

10. Case Study 1
• 1st episode - 3 years 9 months, loss
of vision L eye. CIS, IV
steroids
• 2nd episode -3 years 11 months, loss of
vision R eye. IV steroids

11. 27/11/2009 07/04/2016

12. • 3rd episode - 4 years 2 months,
encephalopathy and
horizontal gaze palsy. IV
steroids
Case study 1

14. • 4th episode - 5 years tremulous L hand and
stammering speech
• Treatment - 5 years 3 months rebif started
7 years 6 months Tysabri

15. • Family history
• Neuropsychology
• Psychology input
• Educational support
Impact on the family

16. Case study 2
2 year history of chronic fatigue following
glandular fever, vomiting & abdo pains.
• 1st episode - 15 years 6 months, Dysphagia &
cycles of ‘gastric vomiting’,
increasing headache. LP WCC
in CSF
• 2nd episode - Paraesthesia both hands, heat
intolerance, numbness R side
face, pain in R forehead. WCC

17. • Dysphagia - weight loss, diarrhoea,
vomiting, PEG, PEJ, C-diff –
pseudomembranous colitis,
anal abscess, pain
Concerns

18. 13/06/201605/06/2014

19. • Family support
• Consent to treatment
• Safeguarding concerns
• Psychology input
• Education provision
• Transition to adult services
Impact on the family and considerations

20. Questions?
Thank you