Palais des Nations, Geneva – Monday 25 May, marked an historic leap forward in global advocacy for children’s palliative care when the very first side event on the topic was held at the 68th World Health Assembly ending today. The side event was organised by the Permanent Missions of Panama, Chile, Italy and Spain at the motivation of the International Children’s Palliative Care Network (ICPCN).
Not only was there a full house at the event, with over 90 people attending, those present received an unexpected but most welcome visit and short speech from Dr Margaret Chan, Director General of the World Health Organization. In her impromptu speech, Dr Chan praised the civil society involvement of all the supporting organisations listed on the programme and said that the World Health Organization was pleased to work with these organisations to get the WHO resolution on palliative care going and to assist countries to do their best to help children with special needs.
She said that listening to a presentation had reminded of her ‘past life’ when she too had been involved in hospice care with different age groups and stated how pleased she was to know that children’s needs were being recognised. Her parting comments before leaving to attend another event, was “Keep up the good work. Don’t give up!”
Opening remarks
In their opening remarks Assistant Director Generals, Dr Marie-Paule Kieny and Dr Oleg Chestnov outlined the efforts and achievements of the World Health Organization (WHO) in working towards strengthening palliative care systems worldwide and emphasised the importance of making the lives of children as good as possible, especially when their lives will be shortened.
Dr Chestnov remarked that there was a big future for palliative care and that a lot of activity in integration could be achieved through the development of palliative care for both adults and children.
What is the need?
Joan Marston, Chief Executive of the ICPCN, spoke on the need for children’s palliative care. Quoting yet to be published research undertaken by ICPCN with the support of EMMS and True Colours Trust, she revealed that it is evident that at least 21.6 million children worldwide would benefit from generalised palliative care and around 8.6 million from specialised palliative care. She made the point that the prevalence of HIV and AIDS in children has had a major effect on these numbers. The country with the greatest need is India.
Based on this same research Joan said that given these new statistics, globally less than 1% of children who need it are receiving palliative care. Apart from the lack of resources in many countries, she listed other barriers to provision as a fear of using opioids when treating children, very little relevant education provided to health professionals during their training, the lack of integration into primary care and policy and very little public awareness of the value of providing palliative care to children and their families.
Integration into main health system
Dr Anna Gorchakova, Director of the Belarus Children’s Hospice spoke on the topic of integrating children’s palliative care into the main health system in Belarus. She described how palliative care for children in her country had developed over the years since 1994 and had even led to the development of adult palliative care services.
Her presentation outlined the steps that were taken by the Belarus Children’s Hospice (BCH) to integrate children’s palliative care into the Belarusian health system, which included the creation of academic courses in palliative medicine at the Belarusian Medical Academy, the approval of clinical protocols when providing children’s palliative care and the development of a paediatric palliative care registry with the support of Unicef.
Dr Gorchakova reported that at present in Belarus there are 6 organisations providing palliative care, each region has a palliative care consultant, every district has palliative care cabinet, all organisations are linked.
Developing a national policy in Italy
Mrs Silvia Lefebvre from the Maruzza Foundation presented on the steps taken by her foundation to work with government officials to develop a national policy for children’s palliative care in Italy resulting in Law 38/2010 which aims to provide improved quality of life and the optimisation of resources for children with life limiting conditions.
The importance of having an in country champion, a technical expert in children’s palliative care and the sensitisation and involvement of policy makers to encourage a proactive approach to the approval of the proposed legislation was stressed. Silvia Lefebvre then outlined the milestones from when palliative care for children was first introduced in Italy in 1990 until the passing of the law in 2010.
While admitting that there is still much to be done, it was evident that the passing of the law had resulted in a remarkable improvement in the provision of and access to palliative care for children. It also meant that there is guaranteed access to specialised paediatric palliative care and pain management services for all eligible children in Italy.
Access to pain medicines
Dr Rajagopal, chairman and founder of Pallium India, spoke on improving access to pain medicines for children in India and began by reminding those present of the appalling news story in June 2014 about parents in India who killed their son in hospital and then committed suicide because they could no longer bear witness to his terrible pain and suffering. He spoke with compassion of a family he cared for where due to seizures a child had not slept for more than 15 minutes at a time for the previous 3 months. He urged the medical profession to provide inappropriate end of life care and not to insist on too many unnecessary interventions which result in children suffering a painful and undignified death.
Dr Rajagopal described the value of persistence saying that it had taken 21 years of determined advocacy to finally find a way through the complicated laws and red tape in order to change policy in India making it easier to access the appropriate pain medicines. Ending on a brighter note, his final slide depicted a young child who was one of the few fortunate enough to have received palliative care and so enjoy some quality of life.
In the next presentation, Prof Anne-Sylvie Ramelet from the International Association of the Study of Pain, said that her organisation was concerned about the poor availability of medications for pain, particularly within the palliative care setting.The Special Interest Group (SIG) within the organisation aims to share relevant information on children’s pain control and to encourage research. She highlighted the fact that most countries do not have adequate pain policies and there is a lack of education on the use of pain medicines worldwide.
She quoted the Declaration of Montreal which has three articles setting out the right of people to have pain management without discrimination, the right of people in pain to have acknowledgement of pain and informed how it can be assessed and managed and right of all people in pain to have access to treatment of pain by qualified professionals.
Young adult
In one of the most moving moments of the side event, those present were shown a short video in which Lucy Watts, ICPCN’s Youth Ambassador and a young person with a life limiting condition spoke about how the provision of palliative care by a young adult’s hospice near her home town had improved the quality of her life.
Talking about palliative care Lucy says, “For the first time I could be who I wanted to be and I wasn’t just a condition or a label or a diagnosis. Being life limited is difficult and doing your end of life care plan is not easy but I feel better for doing it …
Asked what key messages she had for policy makers, she said that access to palliative care for children, adults and young adults should be something all people have no matter where they live and what their diagnosis.
“Palliative care has allowed me to make happy memories and to make a good life but also to make plans for a good death.”
The final remarks were given by His Excellency Mr Giancarlo Soler Torrijos from Panama and and there was still time for a few questions from the floor.
Speaking after the successful side event Joan Marston, ICPCN’s Chief Executive, thanked all the individuals and organisations who had put in a great amount of work before the event in order to ensure its success including the organising countries, members of the WHO, all the excellent speakers and her staff, She particularly thanked Stephen Connor of the Worldwide Hospice and Palliative Care Alliance and Diederik Lohman from Human Rights Watch, both of whom had guided the ICPCN through the process of securing and staging such an event.
Presentations and videos will be uploaded to the ICPCN website within the next week.
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