Eli Silber & Rachel BurmanConsultant Neurologist, King’s College & Queen Elizabeth Hospitals

Consultant in Palliative Care

What will the new service look like?

The MS TeamAddressing needs

Diagnosis RehabilitationGP

rehabilitationist

neurologist

palliative care

Disease control Symptom control

Holistic approach

The MS TeamDoctorsGPNeurologistRehabPsychiatrist

Extended family/ friends

Patient

FamilyNursesWard / MSContinenceDistrict

TherapyPhysio, OTSpeech / wheelchair

Support organisations

Work

Social services/ professional carers

• SE London - Area covered by old health authorities of LSL BBG

• Referrals from outside for patients with complex needs

• Large urban and suburban population• Includes some areas that are amongst the

most deprived in the country

Area covered by service

Why this setting?

• Large, urban community

• Diverse population, multicultural, social deprivation

• Resources: neurology, palliative care, rehabilitation, nursing

• Established teamwork

Aim of the service:

To complement rather than

duplicate the work of existing

services

Aims of the service• To provide a quality palliative care assessment• To provide specialist welfare benefits advice and and

bereavement support• Liase and act as a catalyst with local services, both

primary and specialist teams• To enable crisis prevention• To develop education and support to primary and

secondary care• To inform future research initiatives• To provide descriptors of good practice

The Service: Where will it be based?

• Physical base at King’s College Hospital

• Working alongside existing palliative care team

• Patients in neurology wards & rehabilitation unit

• Palliative care clinic linked to the regional MS clinic

The service: How will it work with other teams?

• Local MS services– MS nurses’ network – Neurologists in district general hospitals

• Palliative care network• Rehabilitation

– Units– Community & hospital based services

• GPs, district nurses• Other specialist nurses e.g. continence/tissue viability

The Service: What will it look like?

• Palliative care consultant

• Palliative care nurse specialist

• Psychosocial worker

• Service co-ordinator

• Administrator

The Service: Appointments Update

• Palliative care consultant – in post Jan 2003

• Psychosocial worker – in post Nov 2003

• Administrator – in post Jan 2003

• Palliative care nurse specialist

• Service co-ordinator

Members of the teamNeurologyPalliative careRehabilitation

MS nursesDistrict nurses

Hospices/ Nursing homes

Palliative care consultant

Palliative care nurse

Service co-ordinator

Social services+MS Society branch welfare officers

Psychosocial worker

The service: Referral criteria We want to be as inclusive as possible

Exclusive Inclusive

The service: Referral criteria

A palliative care assessment will be undertaken of anyone affected by MS or related condition if there are potential or existing problems with:

• Pain and symptom control • Psychosocial needs • End-of-life decisions• Terminal care

Role of the service

• Direct patient care

• Liaison/Co-ordination– Link with other services

• Education– Healthcare professionals – People with MS, carers & general public

Role of the service: Direct patient care• Hospital, home, institution • Work with existing carers/health professionals • Pain and symptom control

– Spasm

– Bladder/bowel

– Breathlessness

– Nausea

• Psychosocial needs

Role of the service: Direct patient care

• End-of-life decision making– Nutrition and hydration issues– Withdrawing and withholding treatment– Informed consent– Place of care

• Terminal care/dying

Role of the service: Liaison

• Link with other services

• Coordination

• Refer as appropriate

• Worker - social services

Role of the service: Education

• Healthcare professionals– Neurologists: training program for specialist

registrars, academic meetings– Regional GP postgraduate teaching– MS Nurses: monthly meetings– Meetings with rehab units/ palliative care– Physio/ OT/ Speech– Formal teaching tools for health professionals

Role of the service: Education

• People with MS, carers and the general public– Meetings with local branches of MS Society– Getting to grips with MS - course for people

with more advanced disease– Chat room discussions

Summary

• Service configuration decided

• JDs completed and appointments underway

• Referral criteria established

• Role of team– Direct care– Co-ordination and liaison– Education