SPARSH NEWSJuly - September 2018

CHAIR CHAT

Firstly, a belated farewell to the out-going Trustees Mr. V.V. Ramana, Dr. PranathiReddy, Mr. Madhu Poomalil, Dr. M. Subrahmanyam and Dr. Reganti SivanandaReddy. All contributed significantly to Sparsh Hospice, with Mr. Ramana being ourTrust President (2017-18) and Dr. Subrahmanyam, one of the founding membersand a long-term Trustee of our Trust. We hope to receive your continued supportto the hospice.

Four new Trustees, Mr. D. Prabhakar, Ms. Tanvi Pamnani, Mr. Manohar Reddy, andMs. Savida Naidu were appointed at the 2018 AGM in September and their inputis already greatly valued.

Mr. B. Malliakrjun, our past Trust Secretary (2017-18) is now appointed as theTrust President (2018-19). Mr. Prabhakar has been appointed as Trust Secretary(2018-19) to support the President for all Trust activities. While Dr.Subrahmanyam has been re-elected as one of the long-term Trustees for a furtherperiod of three years (2018-2021), Mr. Anup Agarwal continues to play the role ofthe Trust Treasurer and Mr. Suresh Reddy continues to remain on board as one ofthe long-term Trustees. We extend a hearty welcome to all members.

PATIENTS STATISTICS

July August Sept Total

Admissions

In-patients (new) 29 22 20 71

Re-Admissions 3 5 3 11

Total 32 27 23 82

In-Patients

Home-Care Patients

July August September Total

Home visits

New visits 15 16 16 47

Revisits 17 29 19 65

Total 32 45 35 112

July August September NEW

REGISTERED

PATIENTS

Out-patients 10 14 05 29

Out-Patients

Total Patients Registered at Sparsh Hospice

July – September 2018

In-patients (new admissions) 71

Home-Care (new visits) 47

Out-patients 29

Total 147

Total Deaths & DischargesJuly – September 2018

Deaths 48

Discharges 35

Total 83

S. No. TYPE OF CANCERNo. of

PatientsS. No. TYPE OF CANCER

No. of Patients

1 Ca Tongue 2 16 Glioblastoma 1

2Osteogenic Sarcoma

5 17 Ca Gall bladder 1

3 Ca Thyroid 1 18 Ewing’s sarcoma 1

4 Ca Colon 4 19 Ca Ovary 2

5 Ca Urothelial 1 20Intrahepatic cholangio carcinoma

1

6 Ca Lung 8 21 Synovial Sarcoma 1

7 Ca Hypopharynx 2 22 Adeno carcinoma 1

8 Ca Caecum 1 23 Ca Liver 3

9 Ca Stomach 3 24 Ca Prostate 1

10 Ca Pancreas 4 25Anaplastic large call lymphoma

1

11 Ca Cervix 5 26 Ca Fallopian tube 1

12 Ca Breast 14 27 Ca Buccal mucosa 1

13 Ca AML 1 28 Ca Gastric lymphoma 1

14 Ca Rectum 12 29 Ca Endometrium 1

15 Ca GE junction 1 30 Ca Alveolus 1

Total - 82

RCBH TRUST 9th AGM

In accordance with the requirement as set in the Trust Deed, the Annual General Meeting (9th AGM) of the Trust was conducted on 15th August

2018. 21 members were able to attend the meeting.

Some of the items presented for discussion in the AGM are listed below:

✓ Overview of Trust Activities✓ Trust Accounts for the Year 2017-18✓ Outgoing Trust President’s Remarks✓ Handing over the Trust Presidentship to Mr. B. Mallikarjun and his

Acceptance Address✓ Election of New Trustees from among Club Members✓ Nomination of 3 Long Term Trustees✓ Financial Resolutions✓ Appointment of Auditors✓ Few other matters.

In Support of Sparsh Hospice

In-patient Ms. P. Padmaja’s relatives - Mr.Jagan Suryanarayana and Mrs. Satyavathigifted a cheque to support Sparsh.

Ms. Anuradha Bhaskar Rao and Mr. Kiran Zakariah,HSBC - GFO team members, gifting a cheque forcontributions made by their colleagues to supportfree palliative care services by Sparsh Hospice.

At Sparsh Hospice, we provide free palliative care services to terminal cancerpatients. All costs and expenses are met from donations contributed by Donors –Individuals, Philanthropists, Corporates, Institutions & Foundations.We acknowledge this kindness and extend our heartfelt gratitude for everycontribution made to Sparsh Hospice and urge you to continue to support thisnoble cause.

In-Kind Donations

At Sparsh, maximum care and comfort is provided to terminal cancer patients where weaim to minimize suffering and maximize patients’ pain-free time. We also aim to provideaesthetically pleasing surroundings, with home-like environment for patients’ emotionalcomfort.

Dr. MBR Kameshwar Rao from VaaradhiFoundation visited Sparsh in August 2018 alongwith his team. They donated 24 pots of herbalplants like Tulasi, lemon etc. for creating ahealthful and pleasing environment at ourhospice. They also gifted hand-made camphorbags to hang in the patients’ rooms to absorbunpleasant scents from wounds and medicines.

Mrs. Usha Annamraju and Mrs. Rama Devi donated a few paintings to Sparsh in August 2018, to add aesthetic value to the premises and to provide a visual treat to patients. Mrs. Usha is a renowned, self-taught artist who has won several awards for her paintings. Both Mrs. Usha and Mrs. Rama Devi are Sparsh Volunteers.

Several donors are happy to make in-kind donations to help Team Sparsh in providing best careservices to patients. We accept in-kind donations on need basis and usefulness of items beinggifted for patients’ use, and are grateful for same.If you wish to make an in-kind donation to Sparsh – groceries, fruits & vegetables, medical &surgical items, house-keeping material, send us mail at info@sparshhospice.org to learn aboutour requirement.

In-Kind Donations (contd.)

Team AMPL (Automotive Manufacturers Pvt. Ltd.) presented

groceries & housekeeping material to Sparsh in the month of August 2018

In-Kind Donations (contd.)

Mr. Raj Thirumalai donated a reclinerwheelchair in September 2018, for patientswho are uncomfortable using regularwheelchair due to their wounds and medicalcondition.The recliner wheelchair provides bettercomfort to patients suffering from back painsand bloated stomach due to liquid retention.

Robins from the RobinHood Army (NGO)donated more than 300tetra packs of energydrinks in the month ofSeptember 2018, forpatients, attenders andcaregivers at SparshHospice.

Special Visitors at Sparsh

Lion Dr. Prakash Rao – DistrictGovernor 2018-19 (Dist. 320D)and Lion M NagaRuju from LionsClubs International 320D visitedSparsh to learn about ourservices firsthand – July 2018.

Dr. Ravinder Babu, Superintendent of Apollo Hospitals, along with his team of counsellors, visited Sparsh Hospice to learn firsthand about our palliative care services– July 2018. Dr. Ravinder promised to refer cancer patients to Sparsh.

Dr (Capt) Sarthak Patnaik: MD & Founder -Lyflink, an Arthroscopy & Sports Surgeonfrom Bhubaneshwar, visited Sparsh in Sept.2018 along with his team - to have a look atthe hospice and learn about palliative care.Lyflink is an online health platform.Testimonial by Capt. Sarthak: We thankSparsh Hospice for giving us an opportunityto visit its campus. We were fortunate to seethe care given by Sparsh team to thepatients. We are speechless and at the sametime we salute the organisation and its teamfor their tremendous job.

Special Visitors at Sparsh (contd.)

Mrs. Shobha, along with a group of her students,from Sangeetharadhana, visited Sprash in Aug.2018. They sang some Kritis and Slokas for thepatients and their families – Music therapy. Theyalso did a reiki healing session at Sparsh.

Students from Narayana E-tecno School,Hitech Madhapur, visited Sparsh in Sept2018 to celebrate Friendship Day. They tiedhand-made Friendship bands to patientattenders and Sparsh staff.

Community Outreach & Awareness Programmes on

Palliative Care and Hospice Services

At TSRTC Hospital, Tarnaka

Awareness programmes at Tanuku, Eluruand Rajahmundry by Dr. Rohini Reganti.

Patients’ attenders & family members Being addressed at Sparsh Hospice premises

by Dr. Anjaneyulu

At Association of Senior citizens, Secunderabad.

Community Outreach and Awareness Programmes (contd.)

Community Outreach Program at Komatkunta slum area – by Sparsh Social

Worker Ms. Kalpana – Aug 2018

At Govt Chest Hospital, Erragadda - by Sparsh

Counsellor Mrs. Sarada Lingaraju – July 2018

Our Care Team along with Sparsh Board Members chaired the Panel Diacussion on Palliative Care, hosted by Osmania Medical Collage, Hyderabad – Sept 2018

EMOTIONAL WELL-BEING OF CAREGIVERS AND PATIENTS

Celebrating Special Days

SOCIAL WELL-BEING

OF CAREGIVERS AND PATIENTSCelebrating Independence Day

Team Sparsh making ecofriendly Ganeshas with patients & attenders

SPIRITUAL WELL-BEING OF CAREGIVERS AND PATIENTS

Celebrating Festivals

CelebratingGanesh Chaturthi

- Sept 2018

SPIRITUAL WELL-BEING (Cont..)

Sparsh Social worker Mr. Eshwaranna reading Lalitha Sahasranama Stotram in Telugu with

in-patient Mr. Narayana Chetty Sparsh Volunteer Mrs. Neeraja, singing devotional songs for patients

The importance of spiritual well-being among terminal patients is being increasingly recognisedby doctors and mental-health professionals. Particularly, the terminally ill patients strugglewith questions about their mortality, meaning and purpose of life. Many patients turn toreligion for answers for these difficult questions and many find solace in spirituality. At Sparsh,we believe that spiritual well-being among patients will help strengthen their psychologicalfunctioning and adjustment to illness.

SPARSH VOLUNTEERS

Long term volunteer Mrs. Padma Reddy supporting in admin and stock keeping records

Long term volunteer Mrs. Neeraja, singing devotional songs for patients

Long term volunteer Dr. Rohini RegantiPlaying an active role of Medical Director at Sparsh

Long term volunteer Mrs.Pallavi Madhira Heads theHomecare Team."Role play” by home careteam being enacted byNurses, Social Workersand Counsellor to appraisethe team performanceduring home visits.

Surrender – Que Sera Sera! (Whatever will be, will be!)

My work at Sparsh has been a great boon for me as an individual!

It has helped me to gain an understanding, to some extent, of the many niggling questions that have troubled me over the years.

While it is still work in progress, the time at Sparsh has so far been like a ray of bright light in the darkness that exists in my mind.

It is a learning process and my tutors / masters have been the innumerable patients at Sparsh with whom I have been able tointeract. It is common place to hear them say, repeatedly, that they are waiting for the inevitable to happen. They speak with a voiceloaded with a realization that it is time to surrender. At that stage, they are fully aware that they have never been in control of eventsall along, although they pretended otherwise. They speak in a tone of a peaceful surrender to the unfolding events that would takethem closer to the inevitable destination and all who were / are at that stage speak in this similar language.

I take an example here of two individuals who have been at Sparsh till their very end. I had discussions with both about life in generaland one term that was used commonly by both was the word “Surrender”. However, the degree of surrender varied between thesetwo.

While one of them truly believed in a sense of detachment, calmness and was clear that she did not want any sort of interactioneven with her immediate family as she was getting closer to death, but for the other it was very difficult to give in.

Where does this lead to?

As a counsellor and care giver, I realized the term surrender has different connotations for each of us. While for the patient it meansto await the inevitable, for us – the care givers it would mean that we “forget ourselves” and completely surrender to the patient, soas to be able to empathize and understand the mindset / condition of the patient.

Finally, I find that all at Sparsh have it in them to truly surrender and this is what is helping this organization to carry out its activitiesto so many who are in need.

- Pallavi Madhira – Sparsh Volunteer

The ‘I’ Factor of Hospice Counselling

Counselling has a different context from a patient’s perspective when end-of-life -care is concerned.

Here, the contact between the patients and the counselor becomes more informal, leaning towards

being more personal, to the extent that the patients start considering them family. The emotional

energy of the patient being at its lowest, can bring about total dependency on the nearest person

showing concern and care. In most cases that person is the counselor. Because of the poor prognosis

of the disease, the patients and their families let their emotional guard completely down, leaving

them very vulnerable to even a hint of affection. Occasionally they can also become reckless enough

to misbehave. Keeping in mind the imminent loss/death, the hospice patients and their families

require more humanitarian treatment than ever.

The role of a counselor varies from being ‘a person with whom everything can be shared’ to ‘ a person who has answers to

everything’. Most times, families take the counselor for a doctor as he/she is the bridge of contact among the different

disciplines of hospice. The counselor plays the role of a facilitator for emotional issues as well as socioeconomic

issues. Because of the graveness of the situation of the patient, every possibility can be considered an emergency at a

hospice for the simple reason that there can be no tomorrow. Here ,today means now. A word of solace today might mean the

world to the patients and their families, because tomorrow might be too late.

This sense of imminent problem-solving by the counselors/social workers, has the downside of creating an immense sense of

‘I-factor’ for them. There is every possibility of the counselors becoming possessive about their patients, even at the cost of

the patient’s wholistic well-being. Unless the counselors keep themselves in check by constant introspection, there is every

possibility of favouritism towards the patients. The ever-lasting gratitude from the patients and their families, adds fuel to the

fire. This can be resolved only by having a tunnel vision for a patient’s comfort, with everyone playing their role, by being open

to a range of solutions from various sources. Even though counseling in end-of-life-care can be passion-driven, it cannot come

in the way of a patient’s complete well-being.

- Sarada Lingaraju - Sparsh Counsellor

COMING TOGETHER FOR ADVANCEMENT

At Sparsh, we aspire for improvement and advancement of our services every single day.Necessary steps are taken to ensure all is in line of a good model hospice. Regularmeetings are conducted among internal staff, with caregivers and patients’ families tounderstand their issues and to provide necessary support.

NO WISH TOO BIG OR TOO SMALL

It is such a heartening moment when a patientexpresses a desire to eat or drink something special. Itgives us the feeling of optimism and fulfillment alongwith joy of service.

Normally, terminal patients are emotionally upset,physically weak, and quite unwell to express any desirefor food or drink. When they do, it is a joyous momentat Sparsh and our nurses are eager to deliver.

Here’s a picture of a patient being driven to a local chaivendor on the road side for a cuppa. He was drivenwith oxygen support, accompanied by a nurse and hisfather.

Another day, a patient expressed desire for breadomelette. Sister Anusha (Head Nurse) made it herselffor the patient.Also in-patient Sunny Chary wanted to celebrate hisbirthday at Sparsh with all his caregivers.

STAFF TRAINING

Sparsh encourages a culture of continual learning among employees and is dedicatedto supporting the staff meet their personal education and career goals. All members areencouraged to join and attend training programmes relevant to their work. Trainingallows staff to acquire new skills, sharpen existing skills and gives opportunity to workwith new information. It also helps to fill any skill gaps.

VOLUNTEERS AND SOCIAL WORKERS

WORKSHOP

TATA MEMORIAL HOSPITAL, MUMBAI

Sparsh Counsellor Ms. Sarada

Lingaraju attended the 10 days

workshop at Mumbai in August 2018.

FELLOWSHIP IN PALLIATIVE CARE

Dr. Anjaneyulu & Sister Anusha joined the

fellowship one-year program, which started

in August 2018,at the INSTITUTE OF

PALLIATIVE MEDICINE, KOCHI

STAFF TRAINING (cont.)

CERTIFICATE COURSE IN PAIN AND PALLIATIVE CARE NURSINGA six weeks training programme, from 6h August to 15th September 2018, was conducted at theMNJ Institute of Oncology and Regional Cancer Center, Hyderabad. Two permanent nurses fromSparsh, Sister Monika and Sister M. Hadassa attended and completed the certificate course.

Sister Monika -Training Topic: BED BOUND

PATIENT CARE

Sister Anusha - Training Topic: BASIC NURSING ISSUES IN PALLIATIVE CARE

KNOWLEDGE SHARING

Knowledge sharing is essential to be successful, for increase in service quality, to beconsistent and to become a learning organization. Sister Anusha and Sister Monika can beseen sharing the knowledge they gained in their formal training courses that they attendedearlier in this quarter.

IN PRAISE OF SPARSH STAFF

Dr. Mohd Moinuddin Amar, an Urdu poet, also our out-patient,expressed his appreciation of our Social Worker, Ms. Kalpana Bitla,for the assistance and care services she extends to him regularly. Hewrote a poem in Urdu in praise of Ms. Kalpana.

Media Coverage

1st August 2018: Eenadu Newspaper - article titled "Aakhari Kshanallo Aatmeeya Sparsha” -to spread further awareness about Sparsh services and palliative care.

Cycling in support of Palliative Care for Cancer Patients

We are happy to announce that Sparsh Hospice is being supported by 26 yearsold Sanjay Yadav who works at XILINX, Hyderabad.

Sanjay has participated in the Randonneuring events and has completed hisCycle ride on 15th Sept 2018 in Vijayawada. He covered a distance of 300 km bycycling for 16 hours 19 minutes and also completed his 600 km ride across 11districts of Telangana in 39 hours 05 minutes.

He is going to keep on cycling in the future too to raise funds for cancer patients.

Sanjay hails from Haryana and took to cycling when he observed the slow-moving traffic and pollution in Hyderabad. To do his bit, he commutes to workon his bicycle and leaves no additional carbon footprint behind.

Sanjay is an avid trekker and has done several treks in Sahayadris and in theHimalayas. He says that Cycling and Trekking help him to know himself betterand to appreciate small things in life.

He was recently introduced to the concept of palliative care by Shakti, his friend,and colleague at XILINX.Shakti, who has been associated with Sparsh Hospice for more than a year (hisfather was an in-patient at Sparsh), realized that there is not much awarenessamong people regarding the need for palliative care for terminal patients withlife-limiting diseases like cancer, and discussed about Sparsh Hospice withSanjay, who then decided to help Sparsh by spreading awareness among peoplethrough his cycling participation in the Randonneuring event.

You Can Donate Here:

https://letzchange.org/campa

igns/cycling-to-support-

sparsh-hospice-centre-for-

palliative-care-seema-

agarwal-1

AIRTEL HYDERABAD MARATHON Sparsh social worker Mr. Eshwaranna and volunteer Mr. Mushtaq seen promoting Sparsh at theSports Expo, organised by the Hyderabad Runners’ Association at Hitex Exhibition Center,Madhapur. The Sports Expo was organised to promote the Airtel Marathon 2018 on 25 Aug 2018.

SPREADING AWARENESS

Dr. Gopal Ramaraju, Marathonrunner in support of Sparsh, canbe seen at the Sports Expo alongwith our Trust President Mr.Mallikarjun, Trust Secretary Mr.Prabhakar, and Sparsh CEO Mr.Ram Mohan Rao.

Airtel Hyderabad Marathon Runners Spreading Awareness about Palliative Care

Dr Gopal Ramaraju ran a full marathon in Argentina, South America in September 2018. He wore Sparsh T-shirt to spread awareness on palliative care.

Dr. Gopal Ramaraju, AssociateProfessor of Medicine and theAssociate director of TransplantHepatology at University ofRochester Medical Center,participated in AirtelHyderabad Marathon 2018 on26th August 2018 in support ofSparsh Hospice. He ran the fullMarathon - 42.195 km.

The group of Trail Blazers running gang from Bangalore also participated inthe Airtel Hyderabad Marathon 2018, in support of Sparsh Hospice and tospread awareness on palliative care.

FELICITATION OF MARATHON RUNNER

at Sailing Club, Secunderabad

A special felicitation ceremony was organised by the Rotary Club of Banjara Hills on 1st September 2018, to welcome andhonour Dr. Gopal Ramaraju, who supported Sparsh Hospice by participating in the Airtel Hyderabad Marathon 2018.

Dr. Gopal Ramaraju is an Assistant Professor of Medicine at URMC and the Associate Director of Transplant Hepatology,USA. He attended medical school at Guntur Medical College in India and completed fellowships in the Gastroenterologyand Transplant Hepatology at University of Medicine & Dentistry of New Jersey. He worked as a transplant hepatologistin the Liver Transplant Center at University of Medicine & Dentistry of New Jersey before joining URMC.

Being a staunch supporter of the palliative and hospice movement, he runs marathons across the world in support ofthis cause. This year, in August 2018, Dr. Gopal Ramaraju was delighted to support the services of Sparsh Hospice byparticipating in the Airtel Hyderabad Marathon 2018 to spread awareness and help raise funds for the cause – palliativecare services for terminally ill cancer patients. He participated in the full marathon.

New Building Update

• Our application for the building fees waiver has beenapproved by Govt of Telangana. Presently awaiting for thewritten orders/communication.

• Temporary Power Supply has been granted by theelectricity board and the Transformer is installed andwaiting for the power supply.

• Civil Contractor SVS Projects is on-board and manpower isbeing mobilized, while temporary labour sheds havealready been installed.

• Due to road widening, we had to rebuild the fencing, andthe preliminary column footing work has been delayed.

Building Contribution Options to the Donors

For Building Fund we have proposed the following tiers of Donors:

5 lakhs and above ---- SPARSH MITRA (Friend of Sparsh)10 lakhs and above--- BRONZE DONOR25 lakhs and above --- SILVER DONOR50 lakhs and above --- GOLD DONOR75 lakhs and above --- PLATINUM DONOR100 lakhs to 400 lacs -- WARD/BLOCK DONOR400 lakhs and above -- Co-Branding of Building

There will be a Donor Wall at the new building premises placed aesthetically at aprominent place to recognize all the major donors who contribute towards the newbuilding fund.

Tax Benefit for the Contribution

For all contributions in India, the donor will be entitled to claim deduction underSection 80G of the Income Tax Act 1961.

We are registered as “Sparsh Palliative Care Services” under 501(c)(3) in the USA.The registration enables US citizens and entitles them to claim tax benefits in US.

For contributions in India:Monetary donations can be made by cheque payable to ‘Rotary Club of Banjara Hills Charitable Trust’ or payable online at: http://sparshhospice.org/donation-form.php using PayU Money payment gateway.

For NEFT transfer: Bank name: YES BANKAccount name: Rotary Club of Banjara Hills Charitable TrustBranch: Banjara HillsAccount No: 025094600000400 | IFSC Code: YESB0000250

Contribution towards the new building fund can be made by Cheque or DD payable to “RCBHCTBuilding Fund”.

For contributions in US:

Sparsh Palliative Care ServicesA NJ Non Profit Corporation 0400640460501(c)3 Approved; EIN No. 46-497295

Monetary donations can be made by cheque payable to 'Sparsh Palliative Care Services‘or payable online at: http://sparshhospice.org/donation-form.php using PayPal payment gateway.Or contact Trustee: Lax Gopisetty, 41596 Bostonian Pl, Aldie, VA 20105Email: lax_gopisetty@gmail.com Cell: 1-571-888-6010

To learn more about us please visitwww.sparshhospice.org

We solicit your kind cooperation towards the construction of our new hospicebuilding. A much needed facility, it would offer Palliative care, free of cost to manymore patients suffering from acute pain and will help the terminally ill patients inhaving a peaceful and dignified departure from this world.