Managed Haemoglobinopathy Clinical Network

Newsletter No.3 (January 2003)

• Chair: Dr Jo Howard (NWLHT) has been designated to chair this group.

• Members: Haematologists from participating hospitals- Dr Nicki Philpott (Ealing Hospital); Dr George Hughes (West Middlesex Hospital); Dr Mark Layton (Hammermith) Dr Inderjeet Dokal ( Hammersmith); Dr Said Abdalla (SMH); Dr Di Hagger (CXH); Dr Christine Costello ( Chelsea & Westminster); Prof Sally Davies (CMH); Dr Richard Kacsmarski (Hillingdon Hospital).

• Acute care nurses - Ms Reggie Haynes (CXH); Ms Sharon Robinson (CMH). Paediatrician - Dr Colin Mitchie.

• CarerGroup: Mrs Malkani (Harrow Thallasaemia Support Group)
• Also, Mary McCloy; Anita Holdcroft; Dr Robert Dunlop (Cochrane Review in Pain Management); & Dr Mabel Alli (Public Health)

• Other members to be included in the future -
• Dr Kofi Anie (Psychologist); Di Dunn (lead acute nurse Hammersmith Hospital); Nancy O’Brien (SMH); an A&E doctor; and a patient representative.

• The aim of the Protocol Group is 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 patients.

Outcomes of the 1st meeting held in November 2002

• Decision was made to look at the acute management of painful crisis in adults initially, and move later on to management of painful crisis in children, acute chest syndrome and others
• Current protocols for painful crisis in adults from participating hospitals were reviewed.
• Agreement was reached to use a common protocol
• An ideal protocol was discussed and an outline produced for a common protocol.
• Next steps
• A common protocol has been circulated to the group for comments before the next meeting in March 2003.

Definition –What this Network is about
The North West London Haemoglobinopathy Network is a grouping 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 with groups.

Achievements in 2002
• A Protocol Group was formed and has held its first meeting.
• The steering group was formed and has met twice.

Objectives in 2003
• To support Haemoglobinopathy consortia commissioning especially specialist centers (eventually 1 for each sector in London)
• To convert the former EHHHA Registry Project Board to a sector-wide Register Group

Register to date
The first objective is to contribute to the existing European Haemoglobinopathy Registry, i.e. a research database for sickle cell patients who are being treated with hydroxyurea and attend at registered, participating hospitals. This part of the register is anonymised.

The second objective is to develop a clinical information system to facilitate and improve the care of patients. From about 1989 all those diagnosed by the North Thames Haemoglobinopathy Neonatal Screening Programme had their data entered retrospectively from birth. But for others (new patients and adults) prospective data.

The Structure of the register is illustrated in Diagram 1.

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