How it started
Below is a historical account of Events:

• Stakeholders were worried that services for haemoglobinopathy patients (i.e. sickle cell disease & thalassaemia) were not uniform across Northwest London sector. Some patients are known to shop around for services.

• Towards a vision of improved care, a public health consultation meeting was held on June 28, 2001 chaired by Dr Jim Kennedy, Medical Director Hillingdon Primary Care Trust. There were over 50 participants including senior clinicians, commissioners, and senior nursing professionals, counsellors, social workers, researchers, voluntary organisations, user groups and patient representatives. All the former four Health Authorities in Northwest London were represented.

• It was agreed to establish a clinical network for Northwest London, with a Network Manager.

• The four Directors of Public Health (DsPH) asked Dr Catherine Brogan Director Public Health Brent & Harrow Health Authority (BHHA) to lead the network. The Chief Executives of the four HAs agreed at their 2001 autumn meeting to fund the activities of the network in 2002 - 2004 (salaries for network manager, part-time PA support, GP training materials and public education)

• In January 2002, BHHA advertised the post of Senior Clinical Medical Officer with special responsibilities for establishing the network, to develop an initial 2-year plan and a forward 5-year strategic plan. The network is part of the public health team in BHHA (Now Brent PCT) as most of the Patients are in Brent.

• An interview was conducted for the network manager post on Feb 15, 2002. Interview panel included Dr Inderjeet Dokal – Consultant Haematologist Hammersmith Hospital / Ealing Hounslow & Hammersmith Health Authority; Dr Jean Chappell – National Neonatal Epidemiologist, Kensington Chelsea & Westminster Health Authority, and Dr Catherine Brogan – Director Public Health BHHA.

• Dr Mabel Alli was offered the job of network manager. The network is now starting from 1 April 2002.

Magnitude of the problem
• It has been estimated there are over 2500 heamoglobinopathy patients who are residents of Northwest London (source: Hickman, Layton, Davies et al, 1999). And on average 25 affected newborn babies are diagnosed each year with sickle cell disease that lives in the sector. (Source: north Thames neonatal regional screening programme).

• Sickle cell disease (SCD) is common in black Africans and their worldwide descendants including African-Caribbean’s. Thalassaemia is common in a band of countries stretching from the Mediterranean to the Far East and can be found amongst people from these countries
Wherever they live worldwide.

• SCD and Thalassaemia are genetically transmitted and the homozygotes have the disease. The heterozygotes have the trait and are usually healthy, but if their partners also carry the trait, there is a chance that some of their children could have the disease. Haemoglobinopathy carrier state has enormous clinical significance in future reproductive period.

Aim of the network
The main aim is to improve outcomes for people with haemoglobinopathies.

Objectives of the network
• To support clinical services
• To simplify patient pathways
• To reduce inequalities in service access

Achievements so far
• Since the network started in April, a scoping study has been completed which resulted in a decision to conduct an audit of organisation of care. The findings from the audit are intended to inform planning and delivery of improved services to meet the needs of the growing number of people at risk for haemoglobinopathy in the sector.

• Watch out for the results of the audit in your next issue of the Newsletter, which will be in September 2002.

Website links:
www.brentandharrow.nhs.uk
www.lho.org.uk/hil/bme.htm
http://www-phm.umds.ac.uk/haemscreening/

FOR MORE DETAILS PLEASE CONTACT
NETWORK MANAGER:
Dr Mabel Alli
Senior Clinical Medical Officer
Brent PCT – Public Health Dept
Wembley Centre for Health & Care
116 Chaplin Road, Wembley
Middlesex HA0 4UZ
Tel: 020 8795 6749. Fax: 020 8795 6483
E-mail: mabel.alli@brentpct.nhs.uk