africa: uk hospice forum seeks partners from africa

UK forum for hospice and palliative care worldwide – joining forces to improve hospice & palliative care – is looking for new members in Africa.

Background and context

Hospice and palliative care is for those whose illness may no longer be curable. Palliative care enables the individual to achieve the best possible quality of life especially during the later stages of their illness. There are millions of people with life-limiting or progressive chronic conditions.

The publication Aids Epidemic Update 2002, released in December by WHO and UNAIDs estimates that there are 42 million people living with HIV/ Aids worldwide with Sub-Saharan Africa having the highest number of HIV positive individuals (29.4 million people living with HIV/ Aids) *(need to attribute). In sub- Saharan Africa alone, there were 600,000 – 700,000 new cases of cancer in the year 2000; by the year 2050 the global estimate is expected to rise to 24 million, out of which, 17 million will be in less developed countries and 2.5 million will be from sub-Saharan Africa.* (Parkin, DM., Bray, F.L., Devesa, S.S. (2001) Cancer burden in the year 2000. The global picture, European Journal of Cancer, 37, S4-66.

Access to antiretroviral drugs (ARVs) for individuals with HIV/ Aids in developing countries is severely limited; and of the people suffering from cancer in developing countries, 80% are first diagnosed when the disease is too advanced for a cure. Palliative care is thus a realistic and practical option and the essential drugs are cheap; but in the developing world where the need is great, hospice and palliative care is often hampered by unstable economies, rural or remote communities with poor communication networks and long standing conflicts or natural disasters.

UK forum for hospice & palliative care worldwide: Our response

In practical response to this context The UK forum for hospice and palliative care worldwide was set up in 2002 by Help the Hospices, the national charity for the hospice movement in the UK. The UK forum comprises a network of UK individuals and organisations committed to promoting and supporting palliative care provision overseas. Associate membership (free of charge) is available to organisations and individuals from around the world and the UK forum is always delighted to welcome new members and to learn about the work they are undertaking and how it might assist them. Current membership totals over 100 organisations and individuals. The forum has a facilitative and enabling role – it works to facilitate twinning and information exchange between hospices in the UK and overseas and to assist members in understanding the latest issues in the changing world in which they operate to enable them to adapt appropriately.

The UK forum is actively seeking to communicate and co-ordinate its activities with donors and international organisations including southern NGOs and national palliative care organisations and to undertake an influencing role with these other bodies to represent and support the need for palliative care provision overseas at government level. Help the Hospices is organising a Hospice and Palliative Care National Associations Seminar, in The Hague from 30 March – 1 April 2003 which aims to bring together representatives from across the globe to learn about how other organisations have contributed to the development of palliative care, how international associations have interacted with government, their experience of organisational development, and to determine future possible collaboration. The seminar fee will be £390, which includes the cost of the seminar and accommodation on 30 and 31 March 2003. Delegates are expected to make their own travel arrangements. Help the Hospices may be able to support a limited number of bursaries to representatives from resource poor countries – please contact Louise Gray, Help the Hospices for further information and a registration form – [email protected]

Worldwide Education Grants Scheme 2002; The UK forum launched a Worldwide Education Grants scheme 2002 with the specific aim of funding education and training for professionals working in resource poor countries involved in the development or provision of hospice and palliative care services. A total of £50,000 was made available to individuals and organisations. In order to launch the scheme Help the Hospices has contributed the money available to the scheme for its first year. In subsequent years it is envisaged that funds will be raised from other sources to support this activity. Among the successful applications were - Hospice Africa Uganda to fund a distance learning diploma in palliative care; Dr Bactrin, Founder of the Meru Hospice in Kenya to undertake the Oxford Brooks University’s Diploma in Palliative Care (for more details and contact name see below) ; Howick Hospice, South Africa to enable 10 students to undertake appropriate courses at the University of South Africa; the Mulanje Mission Hospital in Malawi to allow them to run a training course in palliative care in the district setting; and, the Zululand Hospice Association for two new members of their staff to study for a palliative care course organised by the Hospice Association of South Africa

The UK forum works with “hospice information” (a partnership between Help the Hospices and St Christopher’s Hospice in South- East England) to offer its members a range of useful resources:

- Fact sheets on hospice twinning; Avril Jackson, International Information Officer at “hospice information” can assist in facilitating a twinning partnership between interested hospices and palliative care providers. In Africa, current “twinning links” exist between the Palliative Care Team, St Thomas’ Hospital, London and the Palliative Care Team, Baragwanath Hospital, Johannesburg, South Africa; St Ann’s Hospice, Cheadle and the Hospice Association of Witwatersrand, South Africa; Torbay and South Devon Hospice, Torquay and the UK and South Coast Hospice, Port Shepstone, South Africa. To find out more about these arrangements, the activities and benefits, and to find out about UK hospices interested in establishing a twinning link contact Avril on [email protected]

An enquiry service on international and palliative care: the UK forum and “hospice information” can assist members with queries relating to palliative care. International Directories are available which provide details of useful contacts within the different continents; they have also jointly established an International Skills Database to enable them to respond more effectively to requests of assistance. Typical requests for information and help include: clinical placements in the UK, teaching overseas, sources of funding and project development. The database has currently over 100 individuals and hospices who are willing to share their experience with palliative care providers internationally.

“hospice information” produces a quarterly magazine, hospice information bulletin, which includes articles and stories from around the world. The last edition (Volume 1 No 3) includes a fascinating piece from Sister Leonie Kornas describing the work of the Mother of Mercy Hospice in Chilanga, Zambia. Sister Leonie looks at how the Mother of Mercy Hospice has evolved in response to the needs of the local community which is affected by the HIV pandemic. Besides supporting 20 beds within the hospice the hospice also runs an outpatient clinic and a home-based care programme which serves approximately 400 clients within a radius of 30 kilometres.

In November 2002, the UK forum and “hospice information” launched the first edition of Worldwide Hospice and Palliative Care online, a free bi-monthly email bulletin. A signposting tool, it aims to keep people involved in international projects informed about: funding opportunities, publications, disease information, policy and practice. It aims to help bridge the information gap for people in developing countries with limited resources. This first edition includes a lot of information relevant to palliative care providers in Africa. In particular:

- Reference to The Beit Trust, a small UK based charity which supports health, welfare and educational projects in Malawi, Zimbabwe and Zambia only;

- Carla Lamadora reports on the creation of a new national association in Zimbabwe, the Hospice Association of Zimbabwe (HOSPAZ) and a new project that will improve quality care for carers and organisations involved in home-based care programmes (contact??);

- Distance Learning Certificate in Palliative Care, a multidisciplinary course offered by the University of Wales College of Medicine which is largely web-based and can be taken over one or two years;

- Diploma in Palliative Care which Oxford Brookes University runs in collaboration with Nairobi Hospice, an internationally respected qualification for health and social care professionals in Africa;

- A new project attempting to facilitate a new hospice in Accra, Ghana;

- In a regular feature called “Question Box” which enables readers to communicate with contemporaries across the globe, a request from the Hospice Association of the Witwatersrand for medical supplies for the Soweto Hospice, South Africa.

The newsletter also points readers in the direction of useful web-based journals and websites; and invites feedback and suggestions for future issues. To subscribe to this free newsletter please contact Avril Jackson, [email protected]

The UK forum held its First Annual Conference at Hospice House, London on 6 November. It was delighted that alongside a series of excellent presentations from the main speakers Clare Short the UK International Development Secretary gave the keynote address. The Secretary of State said that the Department for International Development (DFID) was focusing on community care in HIV/ Aids, and how it relates to palliative care, and that there was a need to provide networks of health care support particularly within rural communities. DFID provide £200 million a year on HIV/ Aids, mainly disbursed through other multilateral organisations and local DFID country offices.

The event was attended by over sixty members and was a very exciting culmination of the UK forum’s first year of networking and activities.

Dr Charlie Bond, Specialist Registrar with Sue Ryder Care spoke about the different ways in which services had developed, the role of palliative care in preventive care and the move to home based care in developing countries. He highlighted the need to realise the philosophy and principles of palliative care within respective communities and health structures, not simply exporting Western models. The UK forum aim to commission a policy paper on models of care in 2003 for members.

The UK forum commissioned Sue Lucas, formerly of HIV/ Aids Alliance, to produce a paper on the cross over issues of HIV/ Aids and palliative care. A copy of this paper can be obtained from the UK forum secretariat.

Advocacy was a recurrent theme during the conference: One of three contributing speakers, Faith Mwangi-Powell, International Advocacy Officer – Palliative Care Initiative, at the Diana, Princess of Wales Memorial Fund delivered a presentation about advocacy in the experience of Hospice Uganda. It was agreed that advocacy, whether through formal or informal initiatives, was vital in creating and sustaining an “enabling environment” for hospice and palliative care. The UK forum, will hold for its members, an advocacy training workshop in March 2003. There are also plans to establish regional leads for advocacy. For further information contact Nick Pahl, Development Director, [email protected]

A fascinating component of the day was the session dedicated to members and reports on their work. Jane Appleton, School of Health & Social Care, Oxford Brooks University spoke about the Diploma in Palliative Care, run in collaboration with Nairobi Hospice, Kenya, which is mentioned above. Jane highlighted the challenges they faced in managing this diploma: in interpreting the curriculum for African contexts; support at a distance dependent on reliable ICT; access to literature; high calibre applicants unable to take up their places due to lack of funds. Sheila Hurton talked about The Shepherd’s Hospice in Sierra Leone and gave a chronological account of events since it’s start in 1996. Information about these programmes and for more information about the Annual Conference please contact the UK forum secretariat.

The UK forum would be delighted to hear from individuals and organisations who are interested in joining the UK forum, or who would like to discuss any of the above. Please contact Jennie McDowall, Major Projects Support Officer on +44 (0)20 7520 8220; [email protected] . Websites: www.helpthehospices.org.uk www.hospiceinformation.info