Brent
Teaching Primary Care Trust
Working with our partners for a healthier Brent
www.brentpct.nhs.uk
North West London Haemoglobinopathy Managed Clinical
Network
Public Health Department
Brent PCT
Wembley Centre for Health and Care
116 Chaplin Road
Wembley HA0 4UZ
Tel: 02087956749
Fax: 02087956751
Stroke Team, Vascular Programme
Department of Health
133-155 Waterloo Road
London SE1 8UG
26 September 2007
Re: A new ambition for stroke: a consultation on a national strategy
As Chair of the managed clinical network for haemoglobinopathies in North West London, I am
writing to share with you the Network Board’s response to the national stroke consultation. For
more information about the network, please visit: www.haemoglobinopathy.org
We welcome the development of a national strategy on stroke, but would like to note a key area
that has not been addressed within the consultation document, namely stroke in children and young
adults. The needs of children and young adults who suffer stroke are not explicitly mentioned or
addressed. Sickle cell is a small but important cause of stroke, and the burden of disability is
particularly high in this patient group because of the young age at which stroke occurs.
Approximately ten percent of patients with sickle cell disease will have a stroke and the peak age of
onset is in childhood, although the risk is life-long. There are more than 12,000 patients with sickle
cell disease in the UK and the number is increasing by >2% per year (ref 1). Whilst the prevention
and acute management of sickle-related stroke may be quite different from that of other forms of
stroke, the longer-term supportive care required is often very similar (ref 2) and the costs of care
are high (refs 3,4,5). Primary prevention of stroke in children with sickle cell disease is highly
effective (ref 6). The national standards of care for children with sickle cell (ref 7) recommend
annual trans-cranial Doppler scanning from 3 years of age, and secondary prevention of stroke
through transfusion therapy throughout childhood. The development of accessible TCD services
is therefore vital to improve access to TCD scanning for children with sickle cell disease.
For these reasons we urge that the needs of patients with sickle-related stroke are considered
within the national strategy for stroke.
If you would like to discuss these comments further, please do not hesitate to contact Dr Mabel Alli,
Network Coordinator on mabel.alli@brentpct.nhs.uk or 07974598122
Chair: Marcia Saunders Interim Chief Executive: Ian Wilson
Yours sincerely
Ms Julie Billett,
Interim Director of Public Health
Brent PCT
and
Chair, North West London Haemoglobinopathy Managed Clinical Network
References
1. Intercollegiate Working Party for Paediatric Stroke. Clinical Guidelines for diagnosis and
management of acute stroke in childhood, London: Royal College of Physicians, 2004
2. Adams RJ,McKie VC,Hsu L, et al (1998). Prevention of first stroke by transfusions in
children with sickle cell anaemia and abnormal results on transcranial Doppler
ultrasonography. New England Journal of Medicine 339, 5-11
3. Lewis R Dixon (2004) Rethinking management of chronic diseases. BMJ 328, 220-2
4. DOH (2004) Children and Young People who are ill. National Service Framework for
Children
5. American Academy of Paediatrics (2002) Health supervision for children with sickle cell
disease. Paediatrics 109, 526-535
6. Alan S Wayne, Steve E Schoenike,et al. Financial Analysis of chronic transfusion for strpke
prevention in sickle cell disease. Blood 1 October 2000. Vol 96,Nr 7
7. NHS Antenatal and Newborn Screening Programmes. Sickle Cell Disease in Childhood –
Standards and Guidelines for Clinical Care (2006)
Chair: Marcia Saunders Interim Chief Executive: Ian Wilson