THE young boy lay on his bed, bare-chested, a sheet thrown across the lower half of his body in a vain attempt to hide the fact that he no longer had the use of his legs.
Both he and his mother, who slept on another small bed in the one-roomed garden hut, were starving. The previous month they had eaten nothing but cabbage leaves, and the lack of nutrition was taking its toll.
“It was shocking to see. There was no-one taking care of this child or his mother. He was quadriplegic and yet he was living in a hut at the bottom of his uncle’s garden. They had no money as no government welfare had been paid for four weeks, and basically were living off any vegetation they could forage. He wasn’t terminally ill, but we took him into our care all the same.”
Sitting in his Thistle Street office, Malcolm McVittie almost shudders as he recalls one of the most awful moments in his seven years with the charity Hospices of Hope, which has been caring for the dying in Romania for the last 20 years.
The teenager in the bed was Ionut. He lived in the village of Bod, in the county of Brasov, 95 miles from Bucharest. A swimming accident in 2000 – he’d jumped head first into the local river – had left him without the use of his arms and legs and he spent two years in a run-down hospital where no-one seemed to care if he lived or died and where medication was only given if he could pay.
By the time the Hospices of Hope team heard about him, his body was covered in infected bed sores and his mother was struggling to cope.
“The health authorities had just abandoned him,” says Malcolm. “But then in Romania if you’re not economically active, or over 70, then you’re on your own.
“And if you’re terminally ill, well forget it. They wouldn’t even give a terminally ill person morphine to ease their pain because it was seen as a waste of money. The health system was broken . . . people didn’t trust going into hospital because they used to have to bribe orderlies to have their beds changed and doctors to give them the correct medicines. The families of the terminally ill received no support either – there was no such thing as bereavement counselling. In fact, there isn’t even a Romanian word for ‘bereavement’.
“There was no hospice care there at all before Hospices of Hope arrived, and the charity was treated with a lot of suspicion at first. They didn’t know what a hospice was all about. But now things are getting better – although we think that still 90 per cent of terminally ill people die at home with little support or pain relief.”
Life certainly improved for Ionut and his mother Nellie. With regular medical care from the charity’s nurses, his wounds healed and they now have their own flat thanks to an American donor.
In fact, since the Casa Sperantei hospice in Brasov first opened its doors, 11,000 terminally ill adults and children have received medical, psychological and emotional care, as have their families. And what started as a small team – one Romanian doctor, a British nurse and a local nurse – has become the leading palliative care charity in south eastern Europe, with a number of home care teams, the Princess Diana training centre – which has trained 9000 healthcare professionals – and a hospice in Belgrade in Serbia.
Now the charity is planning to open two more hospices, one for adults in Bucharest, the other for children, 18km outside the city on a working farm. At the moment the Casa Sperantei can only care for 13 adults and six children at any one time. The new city hospice will offer 20 beds for adults and ten respite beds for children, while the farm hospice will have ten in-patient beds for children, a day centre and will be used for respite camps.
To do it, however, the charity needs £4 million and while £2.2m has already been generated in Romania, the Edinburgh branch of the charity has launched an appeal to raise £750,000 in the UK.
“Hospice care is based on the principles of looking after the whole family,” says Malcolm. “Which means it can be expensive. The people we look after have life-limiting illnesses like cancer, leukaemia and neurological problems and there are times, especially towards the end of life, when people do need to spend lengthy amounts of time with us.“
One child who has benefited from the hospice on every level is 15-year-old Ionna. The youngster, who lives on a small farm with her gran, brother and sister, suffers from Epidermolysis bullosa (EB), which is an inherited connective tissue disease. Her skin is so fragile that the slightest friction can separate the layers, causing painful blistering.
In the UK, those suffering from EB are sometimes called “butterfly children”, given the fragility of the skin. In Romania, they are just forgotten – and ultimately die early due to skin cancers and other diseases.
Doina Moise, the paediatric team leader at the Casa Sperantei, says: “The hospice’s involvement with Ionna has been spectacular because she was a withdrawn child, with severe emotional problems. She didn’t relate to anyone, she was isolated. Since being here she’s started to socialise.
“Specialist skincare is vital to avoid potentially fatal infections in the skin, and as she has no bathroom at home, when she comes to the hospice she can have a bath and change her dressings. She also attends school at the hospice, as otherwise she would not be at school. When she was, the other children’s parents said she shouldn’t go to school because she was contagious. She was bullied because of her disability.”
“It’s a situation which would never happen here,” adds Malcolm. “Romania feels like centuries behind in attitudes and facilities. When I got involved with the charity, I had worked for cancer charities before, but knew nothing about hospice care, so going out there to see what was happening with vital.
“And it was obvious to me that here in Edinburgh we have one of the best hospices in St Columba’s and so in 2006 we began an exchange with them so our Romanian staff could come to Edinburgh to see how things were done here and to learn best practice.
“In the other direction went two of St Columba’s leading staff, chief executive Margaret Dunbar and Sister Alison Allan. I think what they saw in Romania shocked them, especially the amount of routine medical care that our staff need to give because the hospitals won’t do it.”
The exchange ran for three years and while it was mutually beneficial, Malcolm appreciates that asking Edinburgh people to dig deep for a hospice abroad is a delicate matter.
But he adds: “We’ve raised £2.2m in Romania alone – which would never have happened a decade ago – so now we’re in the final push, trying to raise money here as well as in the US.
“I hope Edinburgh people will help. Around 40,000 people die of cancer every year in Romania and we just want to give them, and those with other terminal illnesses the chance to spend the end of their lives with some dignity.”
* To donate or find out more about Hospices of Hope please visit www.hospicesofhope.co.uk or call 0131-225 5339.
INSPIRED BY CARE
HOSPICES of Hope was launched by Graham Perolls in 1992. Already a hospice specialist – he ran the Ellenor Foundation in Dartford which was inspired by the care his father had received when dying from cancer – a visit to Romania in 1989 made him desperate to help those who were left in appalling hospital conditions after the fall of Ceaucescu and the collapse of the country’s infrastructure.
He brought a Romanian doctor to the UK to train in palliative care and in 1992 a home care team of three was created to visit patients in Romanian hospitals and to educate staff.
In 1996 a paediatrician joined the team so that they could help children.
The Princess Diana Training Centre opened in 1997 (she donated a substantial sum, but died before it was opened) and the following year the Brasov Health Authority donated land for an in-patient unit.
The Casa Sperantei opened in 2002, offering 13 adult beds and six for children. It also houses an out-patient clinic, a day centre and a school. The charity also wants to achieve government policy changes to ensure that hospice care becomes available to most Romanians by 2015.