An Overview of Palliative Care in England

Mary Pay MSc BSc RCNT SRN2011

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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

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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.

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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

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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

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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

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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

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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

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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

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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.

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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