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Key DGH Not Specialised Commissioning CCG Funded Yorkshire and the Humber Strategic Clinical Networks , Neurosciences Centre activity Specialised Commissioning route funded by NHS England (NHSE) Consultant to Consultant Palliative /EOLC pathway Urgent care Consider referral route into services e.g. GP or A&E 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 Acute Care links ventilation/respiratory & cardiac support see acute care pathway Consider using MND guidelines for screening & appropriateness of NIV Adult Neuromuscular pathway (Dec 2014) (18 years onwards) Timely access to results NM diagnosis excluded Refer back to GP/Referrer 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’ Referred to Care Advisors Genetics tests/Investigations Budget held currently by genetics services Remains undiagnosed with a suspected NM disorder Diagnosed with a NM disorder, care pathway may vary depending on type of condition diagnosed 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 Specialised conditions may need to be seen in a NSc Centre (Consultant to Consultant referral) Referred for medical follow up (NMD guidelines), MDT inclusive- consider respiratory, acute care, cardiac surveillance team & research network Referred for rehabilitation and supportive care as outlined below Access to urgent respiratory & cardiac care throughout patient journey see separate pathway (Appendix A) NB Transition process should be considered within this pathway, see appendix 1 & 2 1 Maintenance, Rehabilitation & Supportive Care Key Indicates a NM disorder Diagnosed with a specific NM disorder refer into DGH Referral to Neurosciences Centre when local DGH is unable to provide specialist level of care (Consultant to Consultant) 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 Patient remains undiagnosed requiring support 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 Access to continuing Health Care as required Access to Palliative Care & EoLC Teams including Hospice (follow End of Life Care pathway) (Appendix B) Rehab & Support Referred to generic NHS community teams Rehab Wheelchairs Equipment Continuing Health Care Vocational rehab services Respite Local Authoritycare Respite/day Social care/SW support as required Local support/voluntary sector Local Authority Adaptations Social care and support Equipment Adaptations/equipment Residential/nursing Residential/nursing carecare 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 2 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 SUPPORTIVE & PALLIATIVE CARE 3 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. Appendix B 4 Adult/Young Adult 18yrs + previously been supported by Children’s Hospice Children’s hospice with extended remit to dies support young adults18+ Supported at home in the community, in residential care Adult 18+ NMD Patient in need of Palliative/ EoLC Care Adult/Young Adult 18yrs + not been supported in a Hospice Environment before Supported in Hospital Acute Medical setting Follow DGH Pathway Adults hospice Young disabled person’s unit/transition facility & supportive/ palliative care Access to Palliative/ EoLC care coordinator Provides general palliative care including specialist symptom control for last hours of life Adult Neuro Muscular Disease Palliative/ End of Life Care (EoLC) Element of Pathway Option to use ‘cold room’ facility at Children’s hospice with extended remit for 18+ Patient dies Funeral directors – chapel of rest at funeral directors Hospitals Adult bereavement services to support family to grieve at the hospital until funeral Access to post bereavement care at adult hospice Young disabled person’s unit/ provides post care support Post Bereavement Services Accessible anytime post bereavement 5