Season’s Greetings from everyone at Ndi Moyo
We hope this newsletter finds you well. Please read on below to find
A letter from Lucy
The latest news from our clinical director, Kathryn Hamling
A new Tuesday Trust initiative for a demonstration garden
Two recent stories from Ndi Moyo patients recounted by volunteers
A record of our annual Act of Remembrance
and many, many thanks to all our generous supporters
To ALL our Friends and Supporters,
and the Trustees of Ndi Moyo UK and Malawi,
we wish you good health, happiness and success in 2014
2013 has been a year of transition for both Tony and I. We welcomed the Hamlings on 8th April and then we had to be off on 6th May while they were in Nairobi with Peter in hospital. We left to be in Uganda for Hospice Africa Uganda for their 20th anniversary and Dr Anne Merriman’s birthday. Tony and I were honoured for services to palliative care there. We left on 15th May to be back in London for our youngest granddaughter’s 4th birthday .
We then embarked on a marathon and lightning visit to meet and thank friends of Ndi Moyo in all the four countries that make up the UK! The hospitality and interest of our contacts and good friends whom we met while visiting Highland Hospice, Inverness; Verendre Cancer Hospital, Cardiff; Macmillan Wing of Antrim Hospital; and Pilgrims Hospice, Margate were all extremely encouraging networking steps. A special thanks to Joe and Bridget Mullens for arranging our visit to Margate and their wonderful welcome and hospitality in London.
A further highlight was our stay with John and Mary Ann Conlon and the Draperstown reunion with the many generous friends and supporters of Ndi Moyo.
Then there was my 70th birthday cerebrations at the end of June. We returned home to Malawi to a morphine crisis which is thankfully now resolved.
I have been to two international conferences – the African Palliative Care Association in September and the African Organisation for Research and Treatment in November. I was honoured to be nominated to be nurse representative for the Council though I did not win the vote.
This year has gone by at lightning speed but I thank God for all of you who have made Ndi Moyo possible. Thanks a million to you all on behalf of the team, patients and their families. We appreciate your sacrifices in order to keep us going. We would not be here without you.
We love you and wish you all the best,
Tony and Lucy xx
Ndi Moyo’s newly lush gardens are growing well thanks to the valuable addition of a bore hole on site.
The latest news from Ndi Moyo’s Clinical Director, Kathryn Hamling
It is hard to credit we are more than a quarter of the way through our assignment and feeling very settled and very much part of the centre and it’s work.
NdiMoyo keeps us both very busy within our respective roles, and despite the slower pace of life and smaller workload, there still never seems to be enough hours in the day!
Peter has now completed mark 4 of the strategic plan with accompanying budgets for further scrutiny and discussion by the UK and Malawian boards of trustees prior to ratification. It has been a huge piece of work so he is looking forward to an ease of the pressure for a little while, although this seems unlikely.
The main area of focus at the minute is the proposed new clinic build planned for next spring.
Our current clinic is no longer fit for purpose, and by UK standards probably never was! There is limited space, and no real privacy to examine or communicate with patients. However when first renovated from the old bank it previously was back in 2008, it was a huge step up from the ‘clinic under a tree’ option.
The first of the proposed clinic’s drawings for discussion were, of course, far too ambitious. Following endless meetings and brain-storming sessions this has been scaled down to a more serviceable, new phased model with six examining rooms, all with a door, a couch, wash hand basin and a desk, a nurses’ room and patient and staff toilets which is such a bonus on current facilities. (Yes – I did mean it when I said the current facilities needed upgrading).
Projects such as this take much time to reach fruition as they are totally reliant on donor-funding, and the applications that precede them. Thankfully two generous benefactors have helped realise the plan thus far and it is hoped we will be working from our new premises by the middle of 2014.
Although state-of-the-art Malawian style, they are basic in comparison to facilities in the UK. There will be wooden examining couches without helpful pump-action raisers, no computer access in the clinic rooms etc., but there is a considerable buzz of excitement amongst the staff. I hope to be able to report back in the spring edition of definite progress on that front.
The current clinic is kept very busy meantime with increased admissions and attendees in each of the last three successive months, possibly as a result of increasing awareness sessions we have run, in getting the information about palliative care to everyone in the community.
Much work is still needed but following a review of expected demand, the clinic team are now piloting a change in their hospital and outreach clinic sessions to try to make the service more accessible and equitable for those living in the remote villages.
We are still seeing patients with very advanced disease so some of our role is in raising awareness of symptoms that should be reported on earlier when there may just be some treatment available. There is always something to be done/worked at which makes the roles we have taken on so interesting.
We had a young UK doctor out for eight weeks as a volunteer and although restricted in his activity by lack of the local language, he was great at helping at clinics, leading on some teaching sessions, acting as an extra driver, lifting and laying patients, and even occasionally delivering the bodies of those who have died from hospital to their villages (a very important task and very expensive if families do not ave this service), and generally being there to bat ideas off, which I have very much appreciated. Helps allay the worry that I am making it up as I go along, as I often am, faced with some of the scenarios I have been over the last few months!
Seamus (not as Irish as his name suggests) left early November and I have to say we all miss him. As well as his medical talents, he also played a mean guitar and boisterous sing-songs were the highlight of our recent patient day-care days, as they initially listened in awe then happily joined in, and those who could got up and danced! It was an amazing sight. The patients are now back to just me without a note in my head, never mind an accompanying instrument.
The morphine crisis we found ourselves in the midst of, thanks to government incompetence, has at last, come to an end. The long awaited morphine powder is now in the country, and we received the promised delivery of our first supply within the week. At NdiMoyo we never completely ran out thanks to the wheeling and dealing with the HIV clinics who accessed stock from the NGOs supporting them, but we did run a bit too uncomfortably to the wire on a number of occasions.
The campaigning did bring together many like-minded medical folk from across Malawi and we have formed a research forum, whose first project is to explore the availability and use of morphine in Malawi and of which I seem to have found myself as principle investigator!
On the up side we have managed to secure funding and once through ethics, hopefully this month, we plan to get started and complete the first round of interviews and visits before the end of December. The proposed outcome is to be able to find out how much morphine Malawi needs, and then try to marry this to the quotas raised in order to stop the stock-outs which have been happening year on year.
The more vigilant reader will have noted that I have not mentioned the festive season many of you will be preparing for as you read this. In my on-line UK newspaper and ‘Good Housekeeping’ I read of shopping days left, winter weather, and mouth-watering recipe ideas related to this time. I feel quite disassociated with it all, not just in the no access to anything, and knowing this is the first year we will be celebrating without family about, but because we are currently at the height of the hot season and Salima is very hot and dry!
I never ever thought the sentence “I wish it would rain” would be one I uttered but it is almost a daily mantra now as the heat becomes increasingly palpable and working through it increasingly difficult. Our first port of call on getting home from work in the evenings is a quick swim in the lake – a perfect antidote and, even in the presence of visiting hippos, the greatest pleasure on a long hot day!
So, on that note I will bring this update to a close. We wish you and those you love a very happy Christmas and every best wish for the New Year ahead. We will be thinking of you all at (our other) home.
Lucy’s Healing Garden
Ndi Moyo and The Tuesday Trust – Gardening Together
Anne-Louise Kelly describes a new initiative at Ndi Moyo, developing a demonstration garden to educate patients for better food security.
Since 2008, Tony and Lucy have held our hands in our journey of partnering with local vulnerable women in the area of food security and education. With Tony and Lucy as our moral compass, we have worked with almost 1000 different women. All HIV positive and all dirt poor.
This year I am delighted that our organization, The Tuesday Trust, and Ndi Moyo are joining forces to work on a patient support demonstration garden on a one acre plot right beside Ndi Moyo’s original compound.
We will demonstrate sustainable permaculture methods, keeping a firm eye on the facilities within the grasp of our members on their own homesteads: bad soil, little water, and maybe not much energy.
We will show them new farming methods, new sustainable and nutritious crops. We will bring training in leadership, conflict management, soil management, micro finance, and nutritious crops.
So we buy the seeds and we send in our man – Mr. Pindani, a Malawian agricultural expert, to do this training on a weekly basis. Ndi Moyo supplies the land and shares their gardeners. At present the training takes place every Friday. Usually very early to avoid the heat. Given that our members are sick, the heavy lifting is done before they come into the garden.
There are roughly 50 members in the Patient Support Group. They have divided themselves into small groups and each group will get training through the wet and dry seasons. We will review at the end of next year and see how it goes.
It’s been quite a journey meeting Tony and Lucy. I have only simple admiration and respect for what they and their medical and admin team do every day. It’s tough and it’s every day. And they have grace and elegance in everything they do.
And to Brendan, the Irish gardener who goes to Ndi Moyo on a volunteer basis and is off again in January – thank you. Don’t really know how we could this without him.
And to the rest of team at the Tuesday Trust, and Lynn Clifford, Chimwemwe, Raphael, Lucias, Mr Mangualam, Mr Enkoma – thank you.
A very happy Christmas and a peaceful new year.
Two recent patient stories from two volunteers:
This was Missi – a blind man with half a face, the other half destroyed by a cancer which would have been treatable in the UK. He had no friends either. This is the lot of many albinos in Africa, rejected by society as bringing bad luck.
On arrival at Ndi Moyo he was ragged and dirty and his wounds were suppurating. Not hard to see why no one wanted him.
In the west we think of palliative care as pain-killing drugs and soothing complementary therapies, but for him it was help with a shower, clean dressings, a good meal and a mobile phone. His mind was unfogged by the tumour which had eaten half his face away and before he left Ndi Moyo he asked to say goodbye to me and to know how I had fared with his request – a mobile phone for a blind man with no-one to call.
I have no idea whether he used it in the two weeks of life that remained to him, but he smiled and tucked it into his pocket. My most foolish and best purchase. Dr Helen Cox, volunteer and Ndi Moyo UK trustee
Dear friends of Ndi Moyo
I have been working at Ndi Moyo for one year now.
We are currently fighting for the life of a very young woman. I will call her Sunshine. When she came to Ndi Moyo she was living in extreme poverty, sleeping only with a piece of material on the mud floor of her small house . Ndi Moyo has provided her with a mattress, a blanket and a mosquito net.
Sunshine is 21 years young. She is HIV positive and suffers from advanced and fungating Kaposi Sarcoma.
She was treated with vincristine chemotherapy but unfortunately did not respond to this medicine. Ndi Moyo then referred her to a government Hospital in Lilongwe to be treated with triple therapy.Over the last five months Sunshine has irregularly been treated there, sometimes only with Vincristine or irregular Vincristine and Bleomycin and rarely, with Doxorubicin (which should be provided every three weeks).
Because of this irregular treatment, her Kaposi Sarcoma started to ooze and later on developed into an advanced , fungating sarcoma. Her left leg is enlarged now and hard as stone. Sunshine can hardly move her leg. She has to walk on crutches which is very difficult for her.
Once a week Sunshine comes to Ndi Moyo to be seen by one of the clinical staff and be treated with reflexology and physiotherapy. She travels by bicycle taxi.
Things have changed for the good for Sunshine. Friends of NdiMoyo came together and fundraised the necessary amount of money to buy the Bleomycin and more vitally, the Doxorubicin for her triple therapy which she can now receive every three weeks.
Sunshine travels to the hospital in Lilongwe in one of Ndi Moyo’s ambulances with fuel provided by the Sunshine fund. She is escorted by a volunteer and she is seen in the new oncology clinic in Kamuzu Central Hospital.
So far Sunshine has had two cycles of chemotherapy and the next will be at the beginning of December. It seems that she is responding well to the treatment enabled by Ndi Moyo and has a good chance of surviving.
This patient story is recounted by Heide, a Salima resident, retired paediatric nurse and a long-term volunteer at Ndi Moyo clinic.
Act of Remembrance
The Annual Act of Remembrance took place this year on Thursday 14 November. The Act of Remembrance is an occasion when all those who have been cared for at the centre since it opened in 2008, and died, are remembered. Many relatives came and prayers were offered by representatives from both the local Christian and Islamic communities. Candles were lit and the names of those who have died since 2006, almost 600 in total, were read out by members of staff.
As always, Ndi Moyo relies on the kindness and generosity of so many people to keep us caring for our patients and their families.
Lucy would like to say a huge thank you to Louis and Sylvia Nazma Nielsen who donated US$5,000 after she met them in July. And also to Hospice Africa UK for sponsorship for the fees of our two new nurses, Peter and Rex, for their Initiators’ Course in Hospice Africa Uganda, and also for the donation of stoma bags and knitted teddies and blanket squares paid for in Malawi. And to Dr. Richard and Vanessa Adams and family for their support over the years. To SOLID (Saltsprings Organisation for Livelihood Improvement and Development) for their generous support of Ndi Moyo’s Comfort Fund with a donation of $5,332. And to Thomasina Quinn and to Joe, Bridget, Maureen, Seamus and Diarmud for brightening our morning prayers when they were with us. A very loyal and long-standing supporter of Lucy Finch and Ndi Moyo, Maureen Morgan recently returned from an eleven week visit to Ndi Moyo, and would like to thank all the faithful and generous supporters of Lucy Finch and the Ndi Moyo Palliative Care Centre from Ballinascreen/Draperstown/Magherafelt/Cookstown and the surrounding areas.
Maureen appreciates with deep gratitude ALL those who donated to Ndi Moyo and to her personally. Thank you fellow trustees, Mickey and Breige Lawless, Bridget and her husband Joe Mullens (who accompanied and supported Maureen by paying for all her expenses during the eleven week visit); Laurence O’Kane for medicines, family, friends and those among you who wish to remain anonymous. Thank you too, to Maureen’s daughter, Thomasina Quinn, who held a vintage sale to raise vital funds, and to her son, Joseph who actually made it possible for Maureen to travel by paying her fare. Another very big thank you to the staff, parents and children of St Columba’s Primary School, Straw, Draperstown, who have recently made one of many donations to Ndi Moyo with their pennies. Ndi Moyo would also like to thank Maurice Regan of the Market Inn in Draperstown for hosting a gathering for Lucy and Tony Finch when they visited Ireland this summer. And a great big Happy 60th Birthday to Mickey Joe Donelly who donated his birthday gifts to Ndi Moyo this year, dividing his birthday money between Malawi and Kenya and giving Ndi Moyo £440.
And let us not forget the enormous spirit and generosity of John Conlon this year who raised over £16,000 for Ndi Moyo by his extraordinary walk across Ireland.
Thank you so much, friends of Ndi Moyo, from Lucy and Tony Finch, and all the patients, staff and trustees of NMPCT and NMUK.
Thank you very much as well, to all those who contributed their news, stories and photographs to this newsletter.