Select Committee on Health Written Evidence


Memorandum by Children and Young People HIV Network (HA 3)


  This memorandum sets out the impact charging overseas patients will and is having on HIV positive children in the UK. It presents financial and ethical reasons for why HIV treatment such as highly active antiretroviral therapy (HAART), which has been so successful in preventing illness and prolonging life, should be excluded from this charging scheme. It presents how this goes against other government policies in regards to children. Also included is the progress to date of implementing some of the recommendations from the Health Select Committee within the children's HIV sector. The information provided reflects the views and experiences of both health and the voluntary sector in relation to children living with HIV in the UK.

  Within this memorandum, the term "affected" refers to those children living in a family where one or more members are HIV infected.


  The Network is concerned that the government is sending out conflicting messages. In the foreword of the NHS Improvement Plan, the Prime Minister stated in paragraph 1: "Despite past frustrations, the NHS and its values—healthcare for all according to need, not ability to pay—retain overwhelming public support. So, too, do its dedicated, skilled and compassionate staff".[1] Yet the proposed changes in charges will mean that NHS treatment will not be offered on the basis of need.

  Case Study: A Doctor was informed by the Primary Care Trust (PCT) that funding was not available to treat an HIV positive child who did not at that time have leave to remain. This child was rapidly progressing to an AIDS related illness and had to be admitted to intensive care where the illness was treated, but still highly active antiretroviral therapy (HAART) was not permitted to be prescribed. The Doctor argued that one week in intensive care was the financial equivalent to nine months HAART, and that without HAART this child would have many periods in intensive care, with little hope of long-term survival.

  We find the provisions to allow a child access to expensive intensive care treatment, yet not HAART, nonsensical. This procedure saves the PCT no money and causes unnecessary suffering to the child.

  1.  The Children Act 2004, section 11 gives a "duty to promote welfare" to all health bodies in regard to children's health and well-being and the Local Government Act 2000. Section 2, gives a duty for the "Promotion of well-being" to all local governments. In addition, the 1989 UN Convention on the Rights of the Child, ratified in the UK in 1991, states in article 6 that the child has the "right to survival and development"; continuing from this the Convention grants all children, amongst other things, the right to "the enjoyment of the highest attainable standard of health".[2] We believe that these new proposals contravene those valuable provisions to safeguard children's well-being.

  2.  "Overseas patients" includes those fleeing war torn countries to seek refuge in the UK. Many of these countries have high levels of HIV infection. Under these proposed changes, Clinicians will be expected to deny children essential medication (HAART) to prolong their lives because their families will have no way of paying for this.

  3.  Those working in Paediatric HIV Health, as with all health care workers, follow standards of medical ethics. Watching a child's health deteriorate when there are interventions available that could stop that child's suffering would seriously undermine that ethical practice and in turn affect workforce morale and eventually numbers.

  4.  Available data states that there are just over 850 children infected children (only including those born since 1989), a figure that has gradually risen since the pandemic began. Of these, approximately 45% were born abroad.[3] But we do not know the figure for those who would not be entitled to NHS treatment under the new legislation.

  5.  When a pregnant woman is aware of her HIV status and takes appropriate interventions including anti-retroviral medication for herself and the baby, having a caesarean delivery and avoiding breast-feeding, the risk of the baby being infected is only 1%. Without interventions the risk of transmission is about 30%. If pregnant women were denied access to free care there would be many more babies infected with HIV, which is completely unacceptable.

  6.  Children infected by HIV who are diagnosed and treated early live well for many years. Policies that result in exclusion and discrimination of people from accessing HIV health care are likely to counteract promoting HIV testing programs. This would undermine the Government's HIV testing campaign with the African communities and HIV testing in pregnancy. There is already evidence that some HIV positive children whose parents have been denied care after failed Asylum claims have disappeared from care services.


  7.  The following information is in regard to Paediatric HIV service provision and voluntary sector service provision for HIV positive and affected children. Reference will be made to the numbered "Conclusions and recommendations" of the House of Commons Health Committee: Sexual Health.[4]

8.   Paragraph 2: patient involvement

  The Royal College of Paediatric and Child Health Infectious Diseases and the Children's HIV Association have striven to include the voices of HIV positive children in service development and delivery. HIV positive young people have been asked to present at events and voluntary sector organisations have been included in service development.

9.   Paragraph 11: single-handed consultants; Paragraph 20-21: adequate funding

  Following the London review of paediatric HIV services[5] the specialised services commissioners group recommended a similar exercise for paediatric HIV services outside of London too, with an aim to develop national clinical networks for families with HIV.

  10.  CHINN (the Children's HIV National Network) was funded by the DoH and has brought together lead clinicians, commissioners and the voluntary sector to undertake a review of and support the development of regional clinical networks. These will work with the principle that all children and families with HIV have access to the same standard of care wherever they live in the UK.

  11.  There are now over 300 children with HIV living outside of London. It is impractical and inappropriate for all these families to travel to London for treatment and care. There are also increasing numbers of women with HIV giving birth and their family management is increasingly complex. It is essential that there are family centred services that can provide high quality HIV care, which is local to the family.

  12.  The CHINN review of services outside of London highlights the limited resources for Paediatric HIV services. Provision is often run from the good will of staff over and above their regular work. Specialist positions funded outside of Greater London consist of two part-time Consultants, two full-time and three part-time Nurses, one secretary and one day a week for a Pharmacist. This is clearly not sufficient to meet the needs of over 300 children and their families as described in the previous paragraph.

13.   Paragraph 24: voluntary sector resources

  There is limited work occurring to meet the support needs of both HIV infected and affected children through voluntary sector services. The actual number of affected children living in the UK is unknown, but an informed estimate is greater than 10,000. The Children and Young People Network will be working with Children with AIDS charity and the African HIV Policy Network to produce a toolkit to support voluntary and community sector organisations to work holistically with infected and affected children and their families.

14.   Paragraph 37-39: basic knowledge

  The Children and Young People Network has been working with the Department for Education and Skills (DfES) lead, and representatives from Local Authorities and the Health Development Agency to produce guidance for schools on supporting pupils living with and affected by HIV. This will be published in spring 2005 and will work towards raising the complex issues of stigma and discrimination in regards to HIV infection in the school setting.


  15.  "Overseas visitors" infected or affected by HIV or AIDS should not be charged for NHS treatment because:

    —  The system will be unmanageable. Will all patients be asked to prove they are entitled to treatment? Or will certain groups be targeted and discriminated against?

    —  The impact on NHS staff morale and ethical practice will be enormous; having to send ill children away without definitive treatment, knowing that they will return as emergency patients will be demoralising.

    —  Cost-benefit analyses suggest that providing definitive out-patient treatment (HAART) for those that meet the clinical criteria for starting therapy is a cheaper option than not giving HAART and treating life-threatening consequences of HIV infection with intensive or high-dependency in-patient care.

    —  The impact on individual children and breach of their human rights, "Convention on Human Rights" cannot be overstated. New Government legislation, such as the Children Act 2004 aims to protect children from harm and yet in this particular ruling, denial of medical care could cause harm.

1   The NHS Improvement Plan: Putting People at the Heart of Public Services, June 2004. Back

2   United Nations (1989) The Convention on the Rights of the Child. Adopted by the General Assembly of the United Nations on 20 November 1989. Geneva: Defence for Children International and the United Nations Children's Fund. Back

3   Royal College of Obstetricians & Gynaecologists; National Study of HIV in Pregnancy, Newsletter 60. Back

4   House of Commons Health Committee: Sexual Health, Third Report of Session 2002-03 Volume 1 (pp 95-104). Back

5   Developing Clinical Networks for Paediatric HIV Treatment and Care in London (2004). Back

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