1. 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.ukmlw@liv.ac.uk

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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

9. 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

10. 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.

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. Thank You !