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An Overview of Palliative Care in England
Mary Pay MSc BSc RCNT SRN2011
2
Nineteenth Centuryin UK
• The Free Home for the Dying known as the Hostel of God founded 1891 in London, a charitable foundation
• St Luke’s founded in London 1894, a charitable foundation
• Other hospices followed based on charity• These were places for the care of the dying poor• Medical involvement with these establishments
was very limited.
Early Part of Twentieth Centuryin UK
• Society for the Prevention and Relief of Cancer founded in 1911 by Douglas Macmillan. It is now Macmillan Cancer Support.
• 1948 Marie Curie Cancer Care • Both these charities play a very important role
in the funding and development of palliative care services in UK today
4
Modern Hospice Movementin UK
• The modern hospice movement has its origins in the founding of the National Health Service [NHS]
• The NHS was established in Britain 1948. A system of socialised medicine to care for the individual from ‘cradle to grave.’
• This was coupled with an ideological rejection of charity for the provision of health care creating a negative environment for the development of voluntary hospices
Modern Hospice Movement in UK
• The founding of the [NHS] brought with it an expanding population.
• There was a shift away from high mortality to chronic illness and disability among an ageing population.
• This lead to widespread problems of coping for families in impoverished circumstances.
• There was also an awakening among the medical profession for specialist care of the dying.
6
Modern Hospice Movementin UK
• The founder of the modern hospice movement was the late Dame Cicely Saunders.
• She was responsible for the founding of St Christopher’s Hospice in London in 1967
• This was provided by a mixture of NHS and voluntary funding
• This set the pattern for future funding of Hospices
Funding of Hospices and Hospice Teams in UK
65% Voluntary Funding
35% NHS Funding
•There are very few totally NHS funded hospices•All children’s hospices are charitable foundations
8
Charitable Input to Hospice Funding
National Charities• Marie Curie Cancer Care• Macmillan Cancer Support• Sue Ryder Care
Local Charities – for example, Weldmar Hospicecare Trust
Those services that are NHS managed often rely on charitable funding for some of their services
Developments that created Palliative Care as a Specialism in
UK
Emergence of Palliative care as a medical
specialty 1987
The input of Macmillan Cancer
Support in establishing posts
The development of education and
research in palliative care
A series of government reports from
1992 onwards resulting in End of Life
Strategy 2008
10
Some UK Facts and Figures 2009 -2010Community and Hospital Support Services
Home Care Teams
Hospice at Home Services
Day Care Centres
Hospital Support Nurse Services
Hospital Support Teams
310 107 282 41 307
Hospice and palliative care Directory 2009-2010
Hospice and |Palliative care Directory 2009-2010
11
Facts and figures continued
Hospice and Palliative Care Inpatient UnitsAdult Inpatient Units Children’s IP Units
Total Adult Units
NHSAdult Units
Vol.Adult units
Total Adult Beds
NHSBeds
Vol.Beds
ChildUnits
Child Beds
220 60 160 3217 655 2562 42 315
The End of Life Care Pathway
Discussions as end of life approaches
Discussions as end of life approaches
Assessment, care planning and review
Assessment, care planning and review
Delivery of high
quality services
Delivery of high
quality services
Care in the last days of lifeCare in the last days of life
• Strategic coordination
• Coordination of individual patient care
• Rapid response services
• Identification of the dying phase
• Review of needs and preferences for place of death
• Support for both patient and carer
• Recognition of wishes regarding resuscitation and organ donation
• Recognition that end of life care does not stop at the point of death.
• Timely verification and certification of death or referral to coroner
• Care and support of carer and family, including emotional and practical bereavement support
Care after deathCare after deathCoordination of careCoordination of care
• High quality care provision in all settings
• Hospitals, community, care homes, hospices, community hospitals, prisons, secure hospitals and hostels
• Ambulance services
• Agreed care plan and regular review of needs and preferences
• Assessing needs of carers
Support for carers and families
Information for patients and carers
Spiritual care services
The End of Life Care Pathway
Step 1 Step 2 Step 3 Step 6Step 5Step 4
• Open, honest communication
• Identifying triggers for discussion
Why ‘The End of Life Care Strategy 2008’ ?
• Around 500,000 people die in England each year. This is expected to rise to around 530,000 by 2030
• Department of Health has never had a comprehensive strategy on end of life care
• Some patients receive excellent care, others do not 54% of complaints in acute hospitals relate to care of the dying/bereavement care (Healthcare Commission 2007)
• Hospices have set a gold standard for care, but only deal with a minority of all patients at the end of their lives[Prof. Sir Mike Richards 2008 national Clinical Director for Cancer and End
of Life]
Palliative care provision
Two distinct groups:-
• ‘Non-specialist’-: general provision in hospitals, care homes and in their own homes following national guide lines of ‘Gold Standards Framework’ and ‘Liverpool Care Pathway’
• ‘Specialist’-: Specialist palliative care consultants, specialist nurses and teams
Development of Palliative Care in Dorset
1978Macmillan
Unit Christchurch
1984West Dorset Macmillan
Service
1990 Forest Holme
Hospice Poole
1992 Trimar Hospice
1994 Joseph Weld
Hospice and Lewis
Manning Hospice
1996WDMS
becomes Cancer Care
Dorset
2004 Merger of Joseph
Weld, CCD, and Trimar
Weldmar Hospicecare Trust
2 Medical Consultants, 1 Associate Specialist, Junior medical staff,
Clinical Psychologist
Occupational therapist Physiotherapist, Family support
Complementary Therapy, Rosetta Life
Day Hospice and Out patients Social groups, Volunteers
In patient Nurses, Community Nurses, 24 hour help line,
Specialist Nurses in General Hospital
PatientsIn all settings
18
Funding of Weldmar Hospicecare Trust
34%VoluntaryContributions
33%NHSFunding
24%Trading
9%Investment
10 Specialist Community Nurses, 3 Specialist Hospital Nurses
Key Functions• Advice and information• Symptom control• Emotional support• Facilitation• Education and research
Patient Referral Numbersand level of work load 2008-2009
• There were approximately 1100 referrals• Community referrals: 675• In patient admissions: 338• Hospital referrals: 347• Deaths of patients referred: 682• Each referral also involves work with carers/families
Family support
•Social work
•Multi-faith spiritual support and Chaplaincy
•Pre-bereavement work with families and children
•Bereavement support for our patients families.
•Bereavement groups
22
Day Care• The first purpose built day care was at St Luke’s Hospice 1975• Day care is now a major component of hospice services.
Services include:-• Assessment and monitoring• Symptom control• Medical outpatients• Complementary therapies• Recreational activities• Rosetta Life• Personal care• Pampering• Physiotherapy• Occupational Therapy
Social Groups
Run by a Leader
supported by Volunteers
Support Group
Social Group
For ‘well’ Patients. Ongoing
support ,point of contact
Complementary TherapyComplementary therapy is offered to patients, carers, and bereaved either in the
patient’s home, at the Hospice, during Day Care or in the Therapy Suite
Qualified therapists offer:•Massage• Reflexology• Reiki• Relaxation• Meditation• Guided Imagery• Visualisation• Music and Drama Therapy• Aromatherapy • Hypnotherapy• Plus other therapies
25
Rosetta Life
• A charity working within Weldmar Hospicecare Trust
• Works with patients to enable them to tell the life stories that matter to them, to try and make sense of their lives
• They do this through the creative arts – video, painting, writing, music etc
Education
•Education for professional staff
•Information and ‘Drop In’ Centre for patients and public
•Courses for volunteers and unqualified nursing staff
•Conferences
Fundraising
•Dedicated fundraising team
Snowdrop Lottery
Fairs
Fundraising events
•6 Charity shops
200 Trained VolunteersWhat do they do?
Broad spectrum of activities supporting patients
Three main areas of activity:PatientsBereavementFund raising
All volunteers are trained and police checked– database is updated regularly – further courses offered each year
Volunteers• In an average year Weldmar volunteers carry out
approximately 2,650 requests, amounting to over 7000 hours of time
• All volunteers have to attend a two day induction and training course
• All volunteers record all contact and activity and report back to the original referrer
• Bereavement Volunteers– Have to attend a course in bereavement and loss, 16 taught
hours• Fundraising Volunteers
– have more specific training – used for mail-outs/events/manning stands
Volunteers•2650 requests for help
•7000 hours given in time
•All have 2 day induction and training course
•All activity recorded and reported to original referrer
•Bereavement volunteers have to complete 16 hours of training
•Fundraising volunteers - Specific training
Issues for Debate
• When is palliative care offered?• To whom is palliative care offered?• Have we got the emphasis right?• Are there still inequalities of care?• Where do we go from here?
Finally, and ongoing -
This is an on going learning process. We appear to have got some things right, but we still have a lot of questions left to answer concerning managing , funding, developing services and the treatment of the dying patient and their families. We in the UK need to stay alert to what other nations are doing and be open to good ideas that may work for us.
33
References and Bibliography
• Hospice and Palliative Support Directory 2009-2010• Porter, R. [1996]Hospitals and Surgery, in R. Porter (ed) The Cambridge
Illustrated History of Medicine. Cambridge: Cambridge University Press• Saunders, C. [1993] Forward, in D. Doyle, G.W.C Hanks and N. MacDonald,
Oxford Textbook of Palliative medicine, Oxford: Oxford University Press• www.hospiceinformation.info/factsandfigures.asp• Clark,D. Hockley, J. Ahmedzai [1997] New Themes in Palliative Care.
Buckingham: Open University Press• www.macmillan.org.uk• www.mariecurie.org.uk• Department of Health [2008] End of Life care strategy.
www.dh.gov.uk/publications