By Jaime Uranovsky
The Rohan Bloom Foundation and Paedspal are set to open Cape Town’s first children’s palliative care hospice.
Palliative care is vital but is often a scarce and expensive luxury that is inaccessible to many South Africans.
While there are local palliative care hospices for adults, there are, shockingly, none in the city that cater towards children. The Rohan Bloom Foundation together with Paedspal, however, have dedicated themselves to opening and running Rohan House — the first specialised children’s palliative hospice in Cape Town, which is set to start housing patients in early 2020.
Rod Bloom, whose son Rohan tragically passed away from Ewing’s Sarcoma in 2016 at the age of 14, founded the Rohan Bloom foundation in the same year, as a way to honour his son’s memory and to provide children in the Mother City with a sorely needed service — that of in-patient palliative care.
Rod shares, ‘[The hospice] has been our main goal from the very beginning…. This all came out of experience that I had while on the journey with Rohan: the lack of that facility…. There’s no specialised children’s hospice in Cape Town. Children are currently either passing away in hospital wards, where they are fighting for their lives, or they are passing away at home. Most of the kids come from underprivileged homes… so you’ve got situations in the Cape Flats and in the townships where families live in one room or they have ten people living in a house and the conditions aren’t really conducive, because… the hospitals, like Red Cross, don’t have the capacity to keep the kids if they’re not treating them.’
The Rohan Bloom Foundation was established soon after Rohan’s passing in 2016 and it was then that Rod teamed up with Doctor Michelle Meiring, the founder of Paedspal, an organisation that employs a holistic approach to palliative care for children. Rod adds, ‘[The decision to open Rohan House] came about from my association with Michelle… We established a bond… during Rohan’s terminal time and our many discussions were all about this lack of specialised facility hospice: palliative care to house children in their dying days. When Rohan passed away and the [Rohan Bloom] Foundation was put together,… [Michelle and I] decided we would join forces. Basically, [the Rohan Bloom Foundation] would find and build the house and [Paedspal] would operate the house… Paedspal consists of paediatricians, doctors, psychologists, healing therapists, physiotherapists… They are the professionals in palliative and hospice care, while [the Rohan Bloom Foundation] is doing the fundraising and putting the house together. So, it’s all about… providing the comfort, love and care for patients and parents and siblings who are going through this traumatic time and journey.’
Like Paedspal, Rohan House aims to ‘hold a whole family,’ says Rod, as opposed to dealing solely with the patient. ‘Paedspal provides therapy and help for the parents, the siblings and everybody involved with that child; they have a programme… We’re going to take that system as well and put it into the hospice.’ At Rohan House, accommodation and food will be provided for patients as well as for their parents or caregivers.
For Rod, ‘It’s about letting a child die in dignity and as pain free as possible and in comfort.’ The facility will provide between eight to ten beds. Rod explains, ‘Unfortunately, each bed is only taken for about one to two weeks… If the child is really deathly ill and terminal then they go to the hospice. It will be a nice little facility but there is going to be a greater demand and hopefully this will be the first of many — it’s really desperately needed.’ In South Africa, there are no public funds allocated to palliative care at all, let alone for children, so the Rohan Bloom Foundation’s funding is all privately raised. Last year, the organisation officially launched the fundraising for Rohan House on the 24th of May — Rohan’s birthday — and has organised various events since.
‘We’re looking at opening in about a year’s time; we’ve already purchased the house which we need to renovate. It’s 1.2km from Red Cross, and [Paedpal’s outpatient palliative care facility, which opened in 2016] is across the road from Red Cross, so we’re all together.’ While the Rohan Bloom Foundation is well on its way to opening Rohan House’s doors next year, there is still a lot to be done.
Rohan House will have a profound impact on children with terminal illnesses, as well as on their families and communities. Indeed, Rod Reflects, ‘When Rohan passed away, he suffered. He had a terrible… painful ending… basically he lost his dignity… and I always said to myself afterwards [that] his sacrifice is going to allow other people to have that dignity and to die in peace. Another thing is that, because cancer is so rife, I made myself a promise that Rohan wasn’t going to be another statistic: just another ‘open and closed’ child who dies from cancer and then is gone… That’s another reason why I feel so strongly about keeping his legacy alive and that’s the promise that I made, and I’m going to make sure that it does happen.’
You can follow the journey of the Rohan Bloom Foundation and Rohan House:
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To visor Paedspal Paediatric Palliative Care click here
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