Yorkshire and the Humber Strategic Clinical Networks
Adult Neuromuscular pathway (Dec 2014) (18 years onwards)
NB Transition process should be considered within this pathway, see appendix 1 & 2
Non specialist care
refer into one of the regional DGH or Neurosciences Centres Neurology referral
received
Coordinated approach to tests and investigations based on guidelines’ Remains undiagnosed with a suspected NM disorder NM diagnosis excluded
Referred to National Centre for further opinion
At risk patients remain with Neurologist Respiratory Physician or Cardiologist, under shared care model (determined by risk factors) see separate pathway of care
Diagnosed with a NM disorder, care pathway may vary depending on type of condition diagnosed
Referred to Care Advisors Referred for medical follow up (NMD guidelines), MDT inclusive- consider
respiratory, acute care, cardiac surveillance team & research network Acute Care links
ventilation/respiratory & cardiac support see acute care pathway Consider using MND guidelines for screening &
appropriateness of NIV
Refer back to GP/Referrer
Access to urgent respiratory & cardiac care throughout patient journey see separate pathway (Appendix A)
Referred for rehabilitation and supportive care as outlined below Specialised conditions may need to be seen in a NSc Centre (Consultant to Consultant referral)
Key
DGH
Not Specialised Commissioning CCG Funded
, Neurosciences Centre activity
Specialised Commissioning route funded by NHS England (NHSE) Consultant to Consultant
Palliative /EOLC pathway Urgent care
GP/Consultant /Specialist AHP or Nurse can refer
to Neurologists as per guidelines for agreed & prescribed tests as per criteria developed by Association of British Neurologists & locally agreed by Trusts
Consider referral route into services e.g. GP or A&E Genetics tests/Investigations Budget held currently by genetics services
Maintenance, Rehabilitation & Supportive Care
Respite
Respite/day care
Local support/voluntary sector
Access to Palliative Care & EoLC Teams including Hospice (follow End of Life Care pathway) (Appendix B) Referred to neuromuscular/condition specific
MDT for Interventions within the DGH
Neurology Consultant management Regional Care Advisors
Specific Rehabilitation (PT/OT) Posture/seating/balance/mobility/self care Cognitive/behavioural interventions Neuromuscular Physiotherapy Respiratory links (acute planned
pathway)
Psychological support
Speech & Language therapy/dietician Orthotics/splints
Wheelchair assessments Cardiology
Same MDT activity linked to the Neurosciences Centre
Local Authority
Social care/SW support as required Adaptations
Equipment
Residential/nursing care
Rehab & Support
Referred to generic NHS community teams Rehab
Wheelchairs Equipment
Continuing Health Care Vocational rehab services
Local Authority
Social care and support Adaptations/equipment Residential/nursing care Respite
Day care
Voluntary support
Refer to 3rd Sector organisations for support e.g. Psychological/emotional/complementary therapies as required.
? Outreach activity linked to Neurosciences Centre or deemed specialist
Neurology MDT management for some patients e.g.
Outpatient clinics & home visits
Neurology supervision of risk factors Rehabilitation (PT/OT)
Cognitive/behavioural interventions Respiratory links (acute planned
pathway)
Psychological support
Speech & Language therapy/dietician Wheelchair assessments/provision Cardiology Diagnosed with a specific NM disorder refer into DGH Patient remains undiagnosed requiring support Referral to Neurosciences Centre when local DGH is unable to provide specialist level of care (Consultant to Consultant) Key Indicates a NM disorder Access to continuing Health Care as required
Appendix A
RESPIRATORY & CARDIAC PATHWAY
Access into services through one of the following routes
Patient admitted to hospital via A&E with
respiratory/cardiac compromise
Risks identified through Neurology screening in out-patient clinic as per criteria (use screening protocol in NICE MND NIV guideline)
Pts with higher level risks will be referred to Respiratory care under shared care model
GP Identifies cardiac or respiratory risk.
Other
Respiratory &/or Cardiac risk factors Identified, this triggers referral to Respiratory or Cardiac Physician at local DGH or Neurosciences Centre under shared
care model.
(A joint agreement between Physicians to ensure timely appropriate access to care and information sharing between respiratory/cardiac and neurology consultants as required).
Re: Patients seen at alternative hospital (out of area) the treating hospital physician should contact the patients local DGH to pass on information. Each patient across Y& H will hold their own care plan with key contacts
Ongoing care
Once cardiac or respiratory complications have occurred continue shared care model with involved specialties.
Refer to Palliative Care services as appropriate
NB A directory of key champions in respiratory medicine, neurology and neuro- rehab will be attached to this pathway in due course
Children’s and young people’s palliative care – A Definition
Palliative care for children and young people with life-limiting conditions is an active and total approach to care, from the point of diagnosis or recognition,
embracing physical, emotional, social and spiritual elements through to death and beyond.
It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms,
provision of short breaks and care through death and bereavement. (Together for Short Lives, 2012.
http://www.togetherforshortlives.org.uk/assets/0000/4090/adult_child_comparison.pdf)
The palliative care pathway for some children/young people begins very early and continues for a long period of time. For others the pathway may be much shorter and end of life may come fairly quickly. It is clear that ideally there needs to be a number of different options for families when the need for palliative care arises and that no two experiences will be the same. In an ideal world services would be tailored to meet the individual needs of each patient and although that is not possible, services need to fulfil the needs of children and young people as near as can be achieved with the resources available. It is therefore important that the organisation, planning and delivery of services is optimised to provide the ‘best’ service possible that meets the needs of those children and young people.
Adult Neuro Muscular Disease Palliative/ End of Life Care (EoLC) Element of Pathway
dies
Supported in Hospital Acute Medical setting Follow DGH Pathway Adult 18+ NMD Patient in need of Palliative/ EoLC Care Adult/Young Adult 18yrs + previously been supported by Children’s Hospice Adult/Young Adult 18yrs + not been supported in a
Hospice Environment before
Children’s hospice with extended remit to support young
adults18+
Supported at home in the community, in residential care
Access to Palliative/ EoLC care coord
inator
Provides general palliative care includ
ing speciali s t sym p tom control for last hour s of life Patient dies
Option to use ‘cold room’ facility at
Children’s hospice with extended remit for 18+
Hospitals Adult
bereavement services to support family to grieve at the hospital until funeral
Funeral directors – chapel of rest at funeral directors
Post Bereavement Services Accessible anytime post bereavement
Adults hospice
Young disabled person’s unit/transition facility & supportive/ palliative care
Access to post bereavement care at adult hospice
Young disabled person’s unit/ provides post care support