North West Perinatal and Paediatric HIV Network
1.0 Introduction
In line with the recommendations from ‘Developing Clinical Care Networks for Paediatric HIV Treatment and care in London (2004)’ and the Children’s HIV National Network Review CHINN (2005), the Paediatric & Perinatal HIV Clinical Network has been established to develop a North West Clinical Network for families with HIV, with the underlying principle of care being that all children and families with HIV have access to the same standard of care wherever they live in the UK. The network is linked to a HIV perinatal and paediatric lead centre (Imperial NHS Health Care Trust, London) which offers support, advice and guidance.
2.0 Membership
The Core Members of the North West Paediatric & Perinatal HIV Clinical Network are:
- Chairperson
- Lead Clinician representing Greater Manchester, Cumbria & Lancashire, Cheshire & Mersey, North Staffordshire & Shropshire
- Lead Nurse or specialist midwife representing Greater Manchester, Cumbria & Lancashire, Cheshire & Mersey, North Staffordshire & Shropshire
- Specialised Commissioner – Children’s Services
- Children’s Programme Manager (Tertiary services) & Project support
- Sexual Health Network leads from Greater Manchester, Cheshire & Mersey, Cumbria & Lancashire, North Staffordshire & Shropshire
- PCT commissioner representation
- Community and voluntary sector representation
- Barnardo’s, Gregory’s Place representative
Additional members may be co-opted onto the group to report on specific projects as required.
- Public Health
- Health Protection Agency
- Medicines Management
- Psychology
- Pathology
- Patient/Carer representative
- Workforce development/Training and Education
3.0 Scope of the Work
The scope of the clinical network is to improve communication and standards of care across the North West. It is not the responsibility of the group to commission services but to make recommendations to commissioners for their consideration.
4.0 Purpose
4.1 - The group will coordinate Paediatric HIV services for the North West provider catchment population (Cheshire & Mersey, Greater Manchester, Cumbria & Lancashire, North Wales, Isle of Man, North Staffordshire and Shropshire). Where North West patients flow out of region, the network will ensure links are made will peripheral networks.
4.2 - The Group will aim to ensure consistency in the quality and access to paediatric HIV care across the North West and to work in partnership across the multidisciplinary paediatric teams, Specialised Commissioners, Social Services and the Strategic Health Authority. In addition, the network will engage with patients and their carers and associated networks.
4.3 - The group will act as the expert reference group for paediatric HIV care services across the North West, North Wales, the Isle of Man and North Staffordshire and Shropshire.
5.0 Specific Responsibilities
The role of the group is to critically review all aspects of Paediatric HIV Care within the North West. The specific responsibilities of the group are outlined below and will be focused around the patient pathway:
- In line with national & local guidance, to undertake a scoping exercise to identify any pressures/gaps in current service provision. This may result in the need to develop a comprehensive business case for Paediatric HIV by 2009/10 .
- To promote the production of a framework for paediatric HIV care standards across the North West, to take account of national standards such as the Children’s NSF, Chronic disease, NICE and other best practice. The aim will be to achieve consistency in standards across all service providers.
- To promote the involvement of patients and their carers within the planning of Paediatric & Perinatal HIV Care across the North West.
- To ensure that the North West regional centres provide annual audit data on:
- All children with HIV to the collaborative HIV Paediatric study (CHIPS).
- All infants born to mothers with HIV to be notified to National Study of HIV in Pregnancy and Childhood (NSHPC).
- Monitor local provision and performance of Paediatric & Perinatal HIV Care against local and national standards identifying where gaps/pressures exist and make recommendations through appropriate channels to the North West Children’s Tertiary Strategy group to be considered for prioritisation.
- To provide advice on the infrastructure required by local DGHs (District general hospitals) and PCTs (Primary Care Trusts) for the development of education, training and research within Paediatric & Perinatal HIV services, including development programmes for the training of Registrars and training grades.
- To work closely with the Health Protection Agency /North West Public Health Observatory with regard to data intelligence
- To promote the development of integrated patient pathways and to develop service planning and prioritisation by liaising with primary and secondary care colleagues and associated adult sexual health networks.
- To improve communication within Paediatric & Perinatal HIV Care services within the North West.
- To develop a half yearly newsletter and timely website communication with regard to network activity, updates and to share good practice to key stakeholders including: Primary Care Trusts, Foundation Trusts, DGH’s networks and voluntary sector.
- Adhere to the North West Tertiary Children’s Strategy group’s network guidelines and reporting arrangements
- Hold an annual North West HIV workshop to communicate good practice and lessons learned.
6.0 Frequency of Meetings
The Paediatric HIV Clinical Network meetings will be held on a quarterly basis
7.0 Reporting Arrangements
7.1 - Members of the network are responsible for disseminating information to respective organisations
7.2 - The group are responsible for notifying the Children’s Programme Manager and the North West Specialised Commissioner of any communications involving political, media or Freedom of information requests.
7.3 - The Children’s Programme Manager will communicate progress to the North West Tertiary Children’s strategy group on a quarterly basis.
7.4 - The Children’s Programme Manager will communicate progress to respective PCT Collaborative Commissioning Groups. and associated networks.
Network workshop reports
- Workshop report 2008 (Word, 1.36MB)
- Workshop report 2007 (Word, 307KB)
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Issue 5, March 2009 (Word, 1.24MB)
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Issue 4, June 2008 (Word, 1.26MB)
North West Perinatal and Paediatric HIV Network Workshop
17 September 2009, Horseshoe Suite, Haydock Park Race Course, Haydock
The format for the day will include presentations from key speakers and interactive round table discussions. The main topics for the day cover:
- Don’t Forget the Children
- The Local Picture
- Resources to Explain HIV to Children
- Partnership Work and Engaging with the Voluntary Sector
- Workshop Discussions – CHIVA Standards
The Network is keen to ensure representation from a wide range of both specialist units and DGHs. For more information you can download the workshop flyer here. The registration form can be download here.
Network contact: Louise Little, louise.little@nwsct.nhs.uk and Andrea Hughes, andrae.hughes@nwsct.nhs.uk