April 2010 Newsletter

2010 April 25
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REACHING OUT…

Self-Support Group for the Bereaved

“It is three months since my husband passed away. Your team visited us once, true. But, I have been so lonely all this time. The loneliness is frightening….”

“It is four months since my mother died. My wife is devastated… she was totally dependent on my mother…she had not shared a good relationship with her own mother… it was my mother who gave her so much love and support. She has been inconsolable and sometimes I think she behaves abnormally. I did not know where to turn for help. Today, all of a sudden, I feel some hope. May be, if I bring my wife over here, it will help her too.”

Self support group for the bereaved at Trivandrum Institute of Palliative Sciences-

These are just two of the numerous responses from members of bereaved families, for whom we had arranged a get-together on 26th March 2010, at Trivandrum Institute of Palliative Sciences (TIPS), with the idea of formation of a self-support group. The responses left us chastened…what we we have been doing with obvious pride is so woefully and pathetically inadequate!

The group met again on 19th April 2010. Members with special needs were identified and suitable help and support will be arranged. Similar meetings will be conducted on a regular basis.

We are glad this is happening!

Beyond the Window

Blog Action Day: Think about your environment. What is life like for those in the prime of their life, often young men paralysed for life from a grievous fall, an accident or a tumour? We cannot even begin to imagine the problems that plague them once the hospital has “fixed” their spine and left them to their fate…long, lonely hours within the four walls of their homes, with practically no support at all.

We come across not only tales of sorrow, pain and suffering, but also of courage, determination and selfless service among those thus cheated by fate, by life…their world reduced to the narrow confines of their bed. Trivandrum Institute of Palliative Sciences (TIPS) is humbled and honoured to be able to work with these young people.

On May 16th 2010, a Sunday, we have arranged to bring together twelve of them to TIPS for a day of clinical service, education and entertainments. Specialists in Neurology, Psychiatry, Urology, Physiatry and others will be on hand for consultations and advice. The meeting will also initiate a vocational rehabilitation program specifically for this group. We hope to end the day with an outing to the seaside!

We need your good wishes!

STAFF CLUB…

Report on Trichy Palcon …

For those of you who missed the excellent XVII Annual Conference of the Indian Association of Palliative Care organized in Trichy by Dr Mohansundaram, here is a report by Dr Michael Minton on the prize-winning presentations:

The prize-winning scientific papers presented at Trichy Palcon 2010 reflect the wide range of issues that confront patients, caregivers and professionals involved with end of life care everywhere. The topics ranged from spirituality to computer technology reflecting the competing philosophies in our contemporary lives.

  • Dr Naveen R Rodrigues of Vydehi Institute of Oncology & Research Centre, Pain and Palliative Medicine Dept, Whitefield, Bangalore, highlighted the possible malficience from using abstract spiritual practice.
  • The introduction and value of palliative care computer programmes to collect patient data was elegantly demonstrated by Dr Priyadarshini Kulkarni from Cipla Foundation,Pune.
  • Dr E Divakaran, Director, Institute of Palliative Care,Thrissur, in a paper co-authored with Ms Neeraja & Ms Darsini, Junior Research Fellows, IPC, Thrissur, gave a detailed analysis of 119 interviews with caregivers of recently deceased patients on the subject of preferences of place of death and its fulfillment
  • Ms Sushma Shivananda, P G Student from CMC Vellore highlighted the disadvantaged status of terminally ill female patients who are more likely to be cared for in a charitable hospice even when there was a relative at home.
  • Two papers on the introduction of the Indian integrated care pathway (modelled on the Liverpool care pathway) were presented, demonstrating the experience in Calicut (Ms Shyni N, Institute of Pain and Palliative Medicine) and Bangalore (Dr Stanley C Macaden).
  • The value of screening for depression or significant mood changes on a regular basis produces dividends and this has been confirmed with the experience of Dr Ravinder Mohan and Ms Jaspal Kaur in their paper from Cansupport, New Delhi.
  • Mr Jose Pulimootil, Co-ordinator of “Footprints”, a project initiated by Institute of Palliative Medicine, Kozhikode, presented its work and experience with paraplegic and other bedfast patients with progressive chronic illness and the role of the community in bringing them into the mainstream.

Please visit our blog for the full report…

India’s President Endorses Palliative Care

Mrs Pratibha Patil, the President of India, while inaugurating a cáncer hospital in Delhi, said:

Cancer patients require proper care. To lessen their unbearable pain, palliative centres should be established. Along with it, training programmes should be conducted for doctors and nurses. Their skills should be developed in such a way, that proper attention can be given to cancer patients, as they require considerable support and care. I hope the doctors, paramedical personnel and management of this hospital will fulfill their responsibilities with full commitment and dedication.

Is it not fantastic that the President of India has come out with such an important statement?

Let us hope for suitable follow-up action not only by the particular hospital, but also by the Ministry of Health! A significant shot in the arm for palliative care.

You can read the full speech here English & Hindi.

Oral Morphine Reaches Yet Another Regional Cancer Center

Dr Prabir Chaudhury, a radiotherapist in Chittaranjan National Cancer Institute (a regional cancer center directly owned by the Department of Health of Government of India) reports that his institution has procured oral morphine as of 19 April 2010 and he had already used it on four patients.

Congratulations, Dr Prabir Chaudhuri! Congratulations, Chittaranjan Cancer Institute!

Pallium India is proud to be a partner with Dr Prabir Chaudhuri and team in the Pallcare India project funded by Savitri Waney Trust, Farida and Yusuf Hamied Foundation and Bruce Davis Trust.

IAHPC Gets Stamp of Approval from GuideStar!

The International Association for Hospice and Palliative Care (IAHPC) has been recognized as a Valued Partner by GuideStar, a certification organization in the USA which rates NGOs based on their programs, financial management and mission accomplishment and given IAHPC the GuideStar Exchange Seal.

This is an important recognition for donors and funding agencies which rely on GuideStar to rate organizations.

Congratulations to IAHPC’s Executive Director Liliana De Lima & President Roberto Wenk!

COURSES…

Six weeks certificate courses at Trivandrum

Admission is closed for the six week certificate courses starting on May 3rd 2010 at Trivandrum Institute of Palliative Sciences (TIPS).

Those who wish to apply for the course starting on the first Monday of July (July 5th) or subsequent alternate months, please apply using the application forms here: http://palliumindia.org/courses/

Commonwealth Scholarship for Post Graduate Courses

ALERT! APRIL 30th APPLICATION DEADLINE

Commonwealth Scholarship for Post Graduate Courses to be held in Karunashraya Hospice, Bangalore in association with Cardiff University in September 2010. Last date for submitting applications is 30th April, 2010.

For more details, visit: www.pallium.cardiff.ac.uk

Course on Palliative Care in HIV/AIDS

In collaboration with Family Health International (FHI), Pallium India will conduct a three–day foundation course on Palliative Care in HIV/AIDS at Trivandrum from 11-13 May 2010.

The course is primarily meant for doctors and managers working in the HIV/AIDS field identified by FHI, but we may be able to accept a couple of other participants.

Anyone interested, please email info@palliumindia.org

IAHPC Travel Grant to International Congress on Palliative Care

The International Association for Hospice and Palliative Care (IAHPC) announces 10 scholarships to palliative care workers from developing countries to attend the 18th International Congress in Montréal on October 5-8, 2010: http://www.hospicecare.com

ACCOLADES…

Manna from a Star!

A Vijayakumaran, Treasurer & Trustee of Pallium India receiving the contribution of Rs.100,000 from Asin, Youth Icon 2010.

Asin, one of the most adored stars in South Indian cinema, has been chosen by Rose Bowl Television as Youth Icon 2010 from a group of 20 worthy contenders.

And guess what?! She has gifted the prize money of Rs 100,000 to Pallium India.

We are prvileged and grateful to have her as a friend of Palliative Care.

We would like to express our appreciation and thanks to ACV for making this happen and to Mr Vivekanandan Nair and Mr Sumesh Lal, long time friends of Pallium India.

A P Aslam Award for Pallium India

Kshema Foundation has awarded its A P Aslam Achievement Award for this year to Pallium India. The cash award of Rs 50001, a plaque and a citation were handed over by former Chief Minister of Kerala Shri Oommen Chandy, in a function on 5th April at Hotel Mascot. Others who attended included Kerala State Minister Shri P K Gurudasan and KPCC President Shri Ramesh Chennithala.

We are thankful to Kshema Foundation for their support and encouragement.

IN CLOSING…

How much coverage is adequate coverage?

A well-wisher, the son of a patient whom we treated till recently in Trivandrum, offered to buy a vehicle for us provided we could start a 24 hour home visit service and accept emergency calls.

We could not accept it because a vehicle would not be enough; we would need several teams so that they could take 8 hour shifts, each with a doctor and a nurse. But we recognize the feelings that brought up this request.

We give some support to patients, but often it is nowhere near enough, because we now desert them when they need us most! A round-the-clock service is essential.

We must get there some day – not only for the few near our headquarters, but everywhere!

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