Palliative Care in the UK –now-and where are we going?

Professor Mari Lloyd-Williams Professor and Director of Academic Palliative and

Supportive Care Studies Group University of Liverpool mlw@liv.ac.uk

History

• Specialist Palliative Care in UK centred around hospices

• St Joseph Hackney – earliest• St Christopher - most well known• Remit – patient care ( in patient / out

patient / day care) Bereavement support• Most hospices support education - few

participate in research

Specialist Palliative Medicine

• Doctors entered speciality from variety of backgrounds – General Practice; Medicine; Surgery; Anaesthetics

• 1987 palliative medicine recognised as a speciality – access still possible from different backgrounds

• Initial curriculum encouraged diversity

Specialist Palliative Medicine

• 2004 – medical training reformed in UK.• Shorter training programmes.• Enter specialist training earlier• Aims to have better progression and less

competition for posts• Result – too many doctors at consultant

level• Less diversity of entrants

Where do Palliative Medicine Specialists work in UK?

• Majority work within voluntary hospices• Hospital support teams - advisory• Community support teams• Small number located in academic units• Most work across all areas

Hospices

• Major providers of specialist palliative care• Majority of funding raised by donations

/events etc• Majority of patients in hospices have

cancer• Smaller numbers neurological / respiratory

/ cardiac disease• Very small numbers dementia

Who receives specialist palliative care?

• Patients with cancer• By 2030 deaths from cancer will reduce by

17% in UK• People are living longer (specialist

palliative care predominance younger people)

• Living with multiple illness• Dementia is increasing

Specialist palliative care

• Younger ( under 65) cancer patient• Majority still in last weeks of life• 83% of all patients who receive specialist

palliative care will have a cancer diagnosis• However 72% of deaths in UK are not

from a cancer diagnosis

Ageing Population

• Living longer with multiple co-morbidities – these include cardio respiratory disease, cancer, dementia etc

• Depression often factor for older people and end of life

• Social isolation, lack of worth, loneliness key factors – need more than medication

Do we need to change

• 2013 – “Future Ambitions for Hospice Care”

• Summary - Prepare for significant change in the demographics of UK population

Strengthen the connection between hospices and local health and social care systems and local communities.

Dementia

• Dementia affects one in 1000 people under 65; one in 20 over 65 and one in 5 over age of 85

• Increasing incidence with ageing population

• Latter stages patients require all care and over 95% of patients with dementia die in care homes or in hospital

Dementia

• Dementia care can be informed by current guidance

• One model may not suit all, be flexible, be creative

• Communication and collaboration are key• Consultation with carers and people with

dementia essential

Dementia Care

• Care flexible, planned yet responsive. • Better access to day care and support

would allow patients to remain home longer

• Within care home setting – person centred holistic care; acknowledge carer as expert; plan and asked “what to do if?”

• Allow patients with dementia to return home to die

Dementia Care in UK

• Lots of funding being allocated for dementia care – charitable and government

• Lots of initiatives specifically set up for people with dementia e.g. Singing / art

• However must have carer to attend; have to be formally referred, no transport : ? Stigma of attending dementia service

New models of community care

• Regular respite / day care essential for families

• However in early / moderate dementia care need not be dementia specific

• New models of day care embedded in communities.. Less distance to travel; volunteers; creating new friendships and links

Need for Palliative care in future

• Need community based models of care• Links with hospices – feed into hospice

for specialist needs / advice / symptom control and links with other community agencies

• Based on need not diagnosis• Recognition that hospices / specialist

palliative care can not care for everyone•

Thank You !