PatchSA 2019 Declaration Recommendations

APPENDIX

HIGH LEVEL NATIONAL STAKEHOLDER MEETING FOR CHILDREN WITH SERIOUS ILLNESS –

RECOMMENDATIONS – – – ARISING FROM 18 MARCH 2019 MEETING

The twenty (20) recommendations below have been grouped according to the WHO Public Health Model.  The Guiding Principles according to South Africa’s Constitution are then outlined and the 20 Recommendations are unpacked in detail on the pages that follow.

SITUATIONAL ANALYSIS

  • Lack of data – data will tell us the scale of this problem

POLICY AND FUNDING

  • Propose and access a conditional grant for children’s palliative care
  • Government to leverage funding for children’s palliative care urgently
  • Approach the NHC – the policy they approved has not been implemented
  • The palliative care think tank

DRUG AVAILABILITY

  • Update the Paediatric EML with pain medicines for children with neuropathic pain.

IMPLEMENTATION

  • The Care Dependency Grant to be extended by 3 months after death of the child.
  • The Care Dependency Grant criteria to be reviewed to include children with temporary disability associated with severe illness.
  • Distribute paediatric palliative care guidelines immediately
  • Get palliative care into national HR plan
  • Private healthcare to also provide paediatric palliative care services
  • Fund eight (8) public health posts for children’s palliative care
  • Include children in a basic package of services for NHI

MONITORING AND EVALUATION (Outcomes)

  • Monitor morphine ordering nationally
  • Involve the Human Rights Commission to support children’s right to PC
  • Involve the Children’s Institute to support children’s right to PC
  • Advocates to include more children’s voices

TRAINING

  • Include Palliative Care in Echo Platform
  • Training on PC for all HCW
  • Focus on Intermediate Level Training In Children’s Palliative Care

OVERARCHING GUIDING PRINCIPLES

How does the Constitution of South Africa support children’s rights?

Our Constitution requires co-operative governance, so no Minister or the Department of Health can say – we developed the policy and we have no power after that.  Mark Heywood of Section 27 noted Minister Motsoaledi says this frequently but it is not true.  And in an election year, the question to ask Ministers and MECs is – Are you in a properly co-operative relationship? There are not walls around our provinces that prevent implementation.

Does the NHC need to hear that in the Constitution, Section 28 says every child has the right to basic healthcare services, it does not say according to available resources or reasonable steps to realise the right. Section 28 says government must do everything immediately to realise children’s rights.  All government conduct must fit with the Constitution, any conduct that fails the Constitution is unlawful.     Section 237 says government must perform its obligations diligently and without delay. If we provide PPC we can save money.  The apparent lack of budget is not a reasonable explanation. The budget for implementation must be found because children’s best interests are of paramount importance in every matter concerning the child.

It is likely that basic healthcare service includes palliative care and the Constitution says to look at international law if uncertain.  Internationally the United Nations Special Rapporteur on the Right to Health includes palliative care and we have the WHA Resolution on Palliative Care.  There is no question that there is a duty, the question is to ensure implementation.

In practice, government must do everything possible to fulfil this right, that is the standard.  And government must target those with the greatest need.  Parents cannot meet the basic healthcare needs of their children, they cannot diagnose, prescribe and provide psycho-social services.   Cannot say this is the parents’ responsibility.  The first line of responsibility is for government to budget, to implement and to monitor.  Courts have said government cannot say there is nothing left, they must look at the total budget and find a budget – this is eminently affordable.  There is R40 billion spent on corruption in healthcare – this need can be met. A million children and their parents require the highest level of commitment and attention.

UNPACKING THE TWENTY RECOMMENDATIONS

SITUATIONAL ANALYSIS

  • Lack of data – data will tell us the scale of this problem

There is estimated to be more than 1 million children suffering without access to palliative care services. You cannot have overwhelming unmet need in a Constitutional state where there are services available. Data also needs to include costing and potential cost saving from implementing palliative care as a result of better communication, more advance care planning, less futile treatment, more home care and less litigation.

The Recommendation is for all stakeholders in the health and welfare sector to begin to collect data on both the need for children’s palliative care and availability of paediatric palliative care services.

POLICY AND FUNDING

  • Propose and access a conditional grant for children’s palliative care
  • Government to leverage funding for children’s palliative care urgently
  • Approach the NHC – the policy they approved has not been implemented
  • The palliative care think tank

 

  • Propose and access a Conditional Grant for children’s palliative care

Use the Conditional Grant for palliative Care. Money for health resides with the provinces, the only mechanism where National Health funds health directly is through the conditional grant, it is extremely unlikely but not impossible that this grant could be used for palliative care.  This would require a new way of thinking about funding. There is money being spent on palliative care through the pharmaceutical budget, through PHC, hospitals, but it is not labelled as such.

  • Government to leverage funding for children’s palliative care urgently

Ms Sandhya Singh reported Dr Yogan Pillay to say due to resource constraints, NDOH to leverage resources allocated for TB, HIV, Child Health for palliative care.

Recommendation – that NDOH consider how to leverage resources for children’s palliative care as a matter of urgency, whether that is between directorates within National or co-operatively with the provinces. Palliative care for children is a protected right, government has a strong legal duty to provide this service.  Because of this duty, those working in government, at provincial and national level, within directorates such as but not limited to, Child Health or NonCommunicable Disease have a duty to negotiate on behalf of children’s needs. 

  •  Approach the NHC – the policy they approved has not been implemented

The next NHC meeting will take place after the elections.  The MEC FOR HEALTH KZN committed himself to be involved going forward, so the call for palliative care is heard beyond the elections.

Recommendation is to take up the lack of progress on the implementation of the PC policy and lack of budget – with the NHC.  To consider the legal argument for the importance of the implementation of paediatric palliative care.  Government is failing in its duty and the current situation is unlawful.

  • The Palliative Care Think Tank

The National Health Council approved the government’s policy on palliative care (The National Policy Framework and Strategy on Palliative Care) in April 2017.  An implementation plan was developed but a person was not appointed by NDOH to lead the implementation due to lack of funding. Dr Yogan Pillay wants a small think tank to move the PC agenda forward.  Ms Sandhya Singh will send out requests for nominations for participants on that think tank.

Recommendation is that government follow through and set up a think-tank on palliative care – this initiative could take its Agenda from this meeting, which has been representative and it has not tried to reinvent any wheel, it has worked on top of the existing policy and implementation plan.

DRUG AVAILABILITY

Update the Paediatric EML with pain medicines for children with neuropathic pain

Update the Paediatric EML with the drugs needed for pain – using expert opinion and not Randomized Control Trials. Neuropathic pain is underdiagnosed and hence undertreated in children.

Advocating for comparatively more expensive drugs would allow children to go home eg a patient who was a little child with leukaemia was on morphine infusions in hospital at R2,000 a day but could go be freed to go home if he was allowed to have fentanyl patches at R 100 a day.  The thinking of the EML Committee was moving from the price of medicines to a health technology assessment approach. This will not look at it from a societal perspective e.g. the loss of earnings of parents, but will look at hospitalisation costs as part of total cost of care.

Recommendation is that the Paediatric EML Committee reconsider neuropathic pain in children and consider expert opinion.  That the EML Committee consider hospitalisation costs saved by homecare.  Both Recommendations are made in light of Section 28 of the Constitution that the best interests of the child must be considered in all matters concerning the child.

IMPLEMENTATION

  • The Care Dependency Grant to be extended by 3 months after death of the child.
  • The Care Dependency Grant criteria to be reviewed to include children with temporary disability associated with severe illness.
  • Distribute paediatric palliative care guidelines immediately
  • Get palliative care into national HR plan
  • Private healthcare to also provide paediatric palliative care services
  • Fund eight (8) public health posts for children’s palliative care
  • Include children in a basic package of services for NHI
  • The Care Dependency Grant to be extended by 3 months after death of the child.

The meeting heard from the Department of Social Development that the definition of a vulnerable child includes a child who is seriously ill.   Children with severe health-related suffering require paediatric palliative care, including psycho-social support for parents and families.  Challenges faced by children and parents in need of PC include caregivers and young mothers living in poverty who may not have sufficient support to enable them to provide care and they require comprehensive services to support themselves and their child.   To look after the sick child, the mother gives up her job.  In the same month the child dies, the Care Dependency Grant stops.  So now the mother is grieving and starving too. Children who were terrified of dying because they were the only source of income for their family.  When they die that only source of income stops.  Their parents have dedicated their lives to caring for them, with no opportunity to go and look for work, and after the death of their child, they are abandoned by the state.

Many parents living in poverty give up work to look after seriously ill children. The Care Dependency Grant ceases in the same month as the death of their child, and we appeal to the Department of Social Development to extend the Care Dependency Grant for a period of three months to support grieving parents as they attempt to return to work. Recommendation is that the Department of Social Development extend the Care Dependency Grant by three months into the bereavement period.

  • The Care Dependency Grant criteria to be reviewed to include children with temporary disability associated with severe illness.

Children who are seriously ill and temporarily disabled for two to three years cannot access the Care Dependency Grant as it is only available for children who are permanently disabled. The Recommendation is that the Care Dependency Grant criteria be reviewed to include children with temporary disability associated with severe illness. 

  • Distribute paediatric palliative care guidelines immediately

These guidelines (PatchSA) can be made available immediately to all healthcare professionals at hospitals and clinics with approval and assistance from the NaDOH for distribution.

  • Get palliative care into national HR plan

There was a national HR plan in 2012-2017 but it never had a budget.  There is now underway a HR planning process and this group needs to make sure it is clear what the HR needs for PC are, and make sure that it is heard properly in the HR planning process.

Recommendation is that the paediatric PC sector make clear what the HR needs for PPC are, and ensure these requirements are included in the HR planning process.

  • Private healthcare to also provide paediatric palliative care services

Private healthcare also has to look at palliative care. Recommendation is that private healthcare is also to provide paediatric palliative care services.

  • Fund eight (8) public health posts for children’s palliative care

There are very few palliative care providers for children.  Only a minority of South African hospices provide palliative care for children.   Currently there are only a few organizations providing specialised palliative care including Wits, Lambano, Umduduzi, Paedspal and Sunflower House. There are 22 government-funded posts for adult palliative care at Bara, Pretoria and UCT but not a single paediatric palliative care funded post in the public sector in the whole of South Africa. With this few paediatric specialists the healthcare providers will burn out and run out of funding.

Recommendation is to call for eight (8) government-funded posts, two in each of the four regional centres.  And to fund the training of PPC specialists.   Support Specialist training: Provide bursary support for UCT Diploma.

  • Include children in a basic package of services for NHI

Lobby government to define a basic/essential healthcare to ensure children’s care and survival. Engage implementing partners for NHI, who are building a framework for the basic package of services, to request them to consider children’s needs. There is nothing in NHI to explain the priority of children’s health.

 MONITORING AND EVALUATION (Outcomes)

  • Monitor morphine ordering nationally
  • Involve the Human Rights Commission to support children’s right to PC
  • Involve the Children’s Institute to support children’s right to PC
  • Advocates to include more children’s voices

 

  • Monitor morphine ordering nationally

The NHC does not appear to be as effective a co-ordination body as was envisaged by the National Health Act.  A limited number of sensitive indicators need to be included in dashboards that are displayed and discussed at every NHC meeting and included in annual performance plans.  The palliative care policy has included a sensitive indicator of morphine access. The NDOH need to do the calculations and the NHC needs to insist they see the figures reported at each meeting.  The issue of access to morphine needs to be made politically sensitive.

Recommendation: Request the NHC to require NDOH and provinces to report quarterly on oral morphine consumption, per province, normalised by ambulatory care workload.     

  • Involve the Human Rights Commission to support children’s right to PC

Paediatric Palliative Care Sector to meet with South African Human Rights Commission (SAHRC) to call for their recognition and support for this right of children to palliative care.  SAHRC has power including the statutory power to make government provide annual reports and that information should be interrogated by evidence-based civil society organisations like the Children’s Institute who can say if it is accurate.

Recommendation is for paediatric palliative care sector to work closely with SA Human Rights Commission to realise the right of children to palliative care.

  • Involve the Children’s Institute to support children’s right to PC

The Children’s Institute to be involved to make research evidence available to inform more child-centred policies and programming and do a shadow report to the United Nations and the African Committee on the Rights of the Child on the implementation of children’s palliative care services.  This is important in light of the fact that the United Nations Special Rapporteur on the Right to Health has said palliative care must be included within health care for all children.

  • Advocates to include more children’s voices

The role of advocates is to help South Africans to understand the benefits of palliative care, that people can understand they are entitled to this, we need people to understand their rights to palliative care.  You also need to break all the myths around palliative care eg that PC is for the dying.

Recommendation is to broaden the group of activists to include more voices of children and their parents.  

TRAINING

  • Include Palliative Care in Echo Platform
  • Training on PC for all HCW
  • Focus on Intermediate Level Training In Children’s Palliative

 

  • Include Palliative Care in Echo Platform

Charmaine Blanchard and others at NDOH are involved in the Echo project* and Echo will be part of the Human Resources part of the implementation plan. Recommendation is that PC is included in the Echo platform.

*Project ECHO is a lifelong learning and guided practice model that revolutionizes medical education and exponentially increases workforce capacity to provide best-practice specialty care and reduce health disparities. … ECHO trains primary care clinicians to provide specialty care services. (https://echo.unm.edu )

  • Training on PC for all HCW

The multi-disciplinary health care workforce all needs to be trained in palliative care. Recommendation is to meet with the Deans of the Medical Faculties which has become more active in the healthcare crisis, and say to them what needs to change in doctor/nurse/social worker training. 

  • Focus on Intermediate Level Training in Children’s Palliative

PatchSA has funding from Discovery to take forward training based on the Bettercare books.   Request National DOH to endorse and provide a link with provincial public health sector to use this training at intermediate level in public health sector.