What the Network is about?

The North West London Managed Haemoglobinopathy Clinical Network is a group of haematologists, nurses, patients and carers working systematically to deliver improved care that is uniform across the nine hospitals in the sector. The network is developing through themes and groups.

Aims & Objectives

The main aim of the Network is to improve health outcomes for people with haemoglobinopathies within the North West London Health Authority (NWLHA). The specific objectives of the network are as follows:

• To support clinical services
• To simplify patient pathways
• To reduce inequalities in service access

Organisation

The North West London Managed Haemoglobinopathy Clinical Network commenced on 1 April 2001 and encompasses the health communities within one strategic Health Authority (NWLHA). It is managed by a network co-ordinator, Dr Mabel Alli, who is supported in her role by a steering group and two pre existing local sub-groups (Group A and group B). Group A is the Brent and Harrow Sickle Cell & Thalassaemia Liaison Committee, chaired by Dr Jo Howard and Group B is the West of London Haemogloinopathy Group, chaired by Professor Elizabeth Anionwu.

Achievements

• An audit of the organisation or care in the 9 acute trusts within the sector.
• A ‘Protocol Group’ has been set up to formulate common policy for acute management of sickle cell disease across hospitals in northwest London, and to develop an evidence base in care of sickle cell disease.
• Continuing support for the pre existing European Haemoglobinopathy Registry based at Central Middlesex Hospital to assist expansion to include all acute hospitals within the sector.

• Chair:
   Dr Zach de Beer Director Public Health Brent PCT
• Secretary:
   Dr Mabel Alli, Network Co-ordinator
• Haematologist:
   Dr M. Layton / Dr I. Dokal / Dr G. Hughes
• User representatives:
   Mr Patrick Ojeer, Hammersmith,
   Mrs Malkhani, Harrow
• Counsellor:
   Ms Jean Griffiths (Richford Gate HC, Hammermith & Fulham PCT)
• Acute Services:
   Ms Di Dunne, Hammersmith Hospital
• Social Services:
   representative to be advised
• Children’s Services:
   Mr Frank O’friel, Dep Director Children & Maternity services, Ealing PCT
• NHS Haemoglobinopathy Screening Program (London)
• Health Visitor:
   representative to be advised
• Haemoglobinopathy Registry:
   Prof. Sally Davies / Annette Gilmore, Central Middlesex Hospital
• Specialist Commissioning:
   Mr David Kemsley, sector lead Hillingdon PCT
• The Chair of the two local groups:
   Prof. Elizabeth Anionwu, Thames Valley University - Group A
   Dr Jo Howard, Central Middlesex Hospital - Group B

• The steering group shall meet at least twice a year.
• It shall approve the network 3-yr delivery plan 2003-6 as the network stems from the workplan.
• It shall review the work undertaken by the network manager and the management team on an annual basis.
• It shall approve the establishment of themes and project groups for a timely achievement of network objectives.
• It shall recommend strategy (is) for the way forward to stakeholders every year.
• It shall set priorities working with the two local haemoglobinopathy groups in a systematic way.
• It shall report to individual Trusts & PCTs for commissioning needs, and from 03/04 joint specialist commissioning.
• It shall report to the NWLHA board for linkage with similar networks in other sectors of London and with the public health networks.
• It shall ensure that the core elements of the network are in place which include:
• Clear management arrangements as stipulated above.
• Supporting primary care in their role, starting with GP training about pathways for referral purposes.
• Defined service configuration and evidence-based patient pathways to ensure seamless care are received by patients.