An Overview of Palliative Care in England

1. An Overview of Palliative Care in England Mary Pay MSc BSc RCNT SRN 2011

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.

3. 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

5. 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

7. Funding of Hospices and Hospice Teams in UK 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

9. Developments that created Palliative Care as a Specialism in UK

10. Some UK Facts and Figures 2009 -2010Community and Hospital Support Services Hospice and palliative care Directory 2009-2010

11. Facts and figures continued Hospice and Palliative Care Inpatient Units Adult Inpatient Units Children’s IP Units Hospice and |Palliative care Directory 2009-2010

12. The End of Life Care Pathway

13. 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]

14. 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

15. Development of Palliative Care in Dorset

17. Weldmar Hospicecare Trust

18. Funding of Weldmar Hospicecare Trust

19. 10 Specialist Community Nurses, 3 Specialist Hospital Nurses • Key Functions • Advice and information • Symptom control • Emotional support • Facilitation • Education and research

20. 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

21. 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

23. Social Groups

24. 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

26. Education • Education for professional staff • Information and ‘Drop In’ Centre for patients and public • Courses for volunteers and unqualified nursing staff • Conferences

27. Fundraising • Dedicated fundraising team • Snowdrop Lottery • Fairs • Fundraising events • 6 Charity shops

28. 200 Trained VolunteersWhat do they do? Broad spectrum of activities supporting patients Three main areas of activity: Patients Bereavement Fund raising All volunteers are trained and police checked • database is updated regularly • further courses offered each year

29. 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

30. 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

31. 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?

32. 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