Terms of Reference

Mission Statement

  • To improve the patient experience by offering better treatment outcomes for people with sickle cell disease and thalassaemia

 Background

  • South Thames Sickle Cell and Thalassaemia Network (STSTN or the Network) was officially launched in October 2011
  • STSTN is led by consultants from King’s College Hospital (KCH), and Guy’s and St. Thomas’ (GSTT), both of which have about 1000-1200 patients with haemoglobinopathies.
  • Membership includes our sister hospitals, University Hospital Lewisham and the Queen Elizabeth Hospital Woolwich, with over 400 patients.
  • The network also has strong links with centres across South London and beyond, including Medway Hospital, Darent Valley Hospital and Brighton and Sussex University Hospital
  • The Network Support Manager is Eleanor Baggley based at King’s College Hospital

 Objectives

  • To establish and maintain joint methods of working throughout the network
  • To collaborate in specialist clinics including renal, obstetrics, orthopaedics, cardiology, neurology, urology and liver
  • To publish guidelines on the care and treatment of sickle cell disease and thalassaemia
  • To produce patient information sheets and a quarterly newsletter to highlight patient experiences and to update on the latest treatment and research news
  • To develop consistent pathways of care to ensure equitable care is provided across the network
  • To provide expert clinical advice to healthcare professionals working in other services
  • To increase the understanding of a patient’s experience of SCD and thalassaemia via Patient Forum/Awareness events
  • To provide a peer-support network and educational programme for consultants, GPs, nurses, trainees and other healthcare professionals
  • To promote clinical excellence and improve clinical care
  • To disseminate information and raise awareness of ongoing research in the UK and internationally
  • To support audits that may be used to improve patient outcomes and experience
  • To feed into the National Haemoglobinopathy Registry, which will facilitate research into red blood cell disorders

 Network membership

  • STSTN is led by consultants from King’s College Hospital and Guy’s and St Thomas’ Hospital. Membership is open to anyone in the network region who has an interest in sickle cell disease and thalassaemia, including nurses, psychologists and allied health professionals

 Meeting and Events

  • Peer-support meetings such as the Paediatric Sickle Cell and Thalassaemia Meeting and the Adult Sickle Cell and Thalassaemia Meeting
  • Twice-yearly exam revision days for specialist registrars
  • Courses geared towards nurses, counsellors and GPs
  • South Thames Haemoglobinopathy course (a five-day course by Dr Baba Inusa, GSTT)
  • Regional multi-disciplinary meetings

Download the full Terms of Reference here

Comments are closed.