Adult Neuromuscular pathway (Dec 2014) (18 years onwards)

Transcription

1 Key DGH Not Specialised Commissioning CCG Funded, Neurosciences Centre activity Specialised Commissioning route funded by NHS England (NHSE) Consultant to Consultant Yorkshire and the Humber Strategic Clinical Networks Adult Neuromuscular pathway (Dec 2014) (18 years onwards) Palliative /EOLC pathway Urgent Consider referral route into services e.g. GP or A&E Timely access to results NM diagnosis excluded Refer back to GP/Referrer 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 Non specialist refer into one of the regional DGH or Neurosciences Centres Neurology referral received Coordinated approach to tests and investigations based on guidelines Genetics tests/investigations Budget held currently by genetics services Remains undiagnosed with a suspected NM disorder Diagnosed with a NM disorder, 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 model (determined by risk factors) see separate pathway of Specialised conditions may need to be seen in a NSc Centre (Consultant to Consultant referral) Acute Care links ventilation/respiratory & cardiac support see acute pathway Consider using MND guidelines for screening & appropriateness of NIV Referred to Care Advisors Referred for medical follow up (NMD guidelines), MDT inclusive- consider respiratory, acute, cardiac surveillance team & research network Referred for rehabilitation and supportive as outlined below Access to urgent respiratory & cardiac throughout patient journey see separate pathway (Appendix A) NB Transition process should be considered within this pathway, see appendix 1 & 2 1

2 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 (Consultant to Consultant) Patient remains undiagnosed requiring support Maintenance, Rehabilitation & Supportive Care 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 Cognitive/behavioural interventions Neuromuscular Physiotherapy Respiratory links (acute planned Psychological support Speech & Language therapy/dietician Orthotics/splints Wheelchair assessments Cardiology Same MDT activity linked to the Neurosciences Centre 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 Psychological support Speech & Language therapy/dietician Wheelchair assessments/provision Cardiology Access to continuing Health Care as required Rehab & Support Referred to generic NHS community teams Rehab Wheelchairs Equipment Continuing Health Care Vocational rehab services Respite Local Respite/day Authority Local Authority Local Social support/voluntary /SW support sector as required Social Adaptations and support Adaptations/equipment Equipment Residential/nursing Residential/nursing Respite Day Voluntary support Refer to 3 rd Sector organisations for support e.g. Psychological/emotional/complementary therapies as required. Access to Palliative Care & EoLC Teams including Hospice (follow End of Life Care (Appendix B)? Outreach activity linked to Neurosciences Centre or deemed specialist 2

3 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 under shared 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 model. (A joint agreement between Physicians to ensure timely appropriate access to 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 plan with key contacts Ongoing Once cardiac or respiratory complications have occurred continue shared 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

4 Children s and young people s palliative A Definition Palliative for children and young people with life-limiting conditions is an active and total approach to, 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 through death and bereavement. (Together for Short Lives, The palliative 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 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

5 Adult Neuro Muscular Disease Palliative/ End of Life Care (EoLC) Element of 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 dies adults18+ Supported at home in the community, in residential Supported in Hospital Acute Medical setting Follow DGH Pathway Adults hospice Young disabled person s unit/transition facility & supportive/ palliative Access to Palliative/ EoLC coordinator Provides general palliative including specialist symptom control for last hours of life Patient dies Option to use cold room facility at Children s hospice with extended remit for 18+ 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 at adult hospice Young disabled person s unit/ provides post support Post Bereavement Services Accessible anytime post bereavement 5