Download Adult Neuromuscular pathway - Yorkshire and the Humber Clinical

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
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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
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