Managed Haemoglobinopathy Clinical Network

Newsletter No. 2 (October 2002)

Brent PCT: There are 573 patients registered with the local trust at Central Middlesex Hospital (CMH) in 2001, of which 53 were registered as new clients. Paediatric attendance in clinic has increased in recent years to 57% (268 out of 472 booked in 2001) compared to 40% adult attendance (304 out of 765 booked). A model of care to empower patients and carers is provided in outpatients which includes counselling, neuropsychology, cognitive behavioral therapy (CBT) and associated community services. Despite the evidence that this model improves quality of life, there is no designated social worker for meeting the associated community needs of children and families suffering from Sickle Cell Disease & Thalassaemia.

Harrow PCT: It is still not clear how many haemoglobinopathy patients are seen by the local trust at Northwick Park hospital. This further highlights the need for patients there to be included on the haemoglobinopathy register at CMH. It is estimated there are between 120 -150 patients who are not yet on the register. Proportion of at risk ethnic groups for haemoglobinopathy resident in Harrow is 38%, and may be increasing.

Ealing PCT, Hounslow PCT, Hammersmith & Fulham PCT: The proportion of the population at risk for haemoglobinopathy ranges from 23% in Hammersmith & Fulham, to 35% in Hounslow, and 41% in neighbouring Ealing. Due to individual discussion between the former Ealing Hounslow and Hammersmith Health Authority and some of its local providers, namely, Ealing Hospital, Hammersmith Hospital and West Middlesex Hospital, there is funding for a haemoglobinopathy register. Out of the 277 patients identified to date (182 adults, 95 paediatric), about a third have been informed of the registry most of whom have consented to registry. Patient information will start entering the register by April 2003. The register needs to be expanded to include the 59 (50 adult, 9 paediatric) haemoglobinopathy patients seen at Charing Cross Hospital.

Kensington & Chelsea PCT: One in five (i.e. 20%) of the population is at risk for haemoglobinopathy. 58 patients with haemoglobinopathy were reported by the local trust Chelsea & Westminster hospital in 2001. A medical day unit provides emergency day-care to sickle cell patients. Both a patient support group and community counselling services are provided in Hammersmith & Fulham. The PCT needs to contribute to funds for the expansion of the sector-wide register, later London-wide.

Westminster PCT: A third (i.e. 30.4%) of the catchment population are at risk for haemoglobinopathy. About 127 haemoglobinopathy patients are seen at St Mary’s hospital, the majority of whom are children. The register needs to be expanded to include them. While prognosis of children diagnosed at birth is improving, it may be difficult to help them without empowering their parents and carers. Extension of counselling and associated community services (i.e. specialist nurse & social worker) is required for the St Mary’s hospital catchment area if the NHS haemoglobinopathy screening is to take off in London on 1st April 2003.

Hillingdon PCT: Hillingdon PCT shares boundaries with three other PCTs in the sector, namely Harrow, Ealing and Hounslow. There is no counselling or social service provided in the community for the reported 27 haemoglobinopathy patients who are residents of Hillingdon. However, these patients are known to be receiving the community services they require elsewhere, i.e. from neighbouring Ealing and Brent, and sometimes Hammersmith & Fulham. Hillingdon PCT would need to contribute to funding in order to extend community services and to expand the haemoglobinopathy register, which is sector-wide towards achieving equity of care for haemoglobinopathy patients.

Some of the Key Facts relating to Haemoglobinopathies by Professor Sally Davies, Consultant Haematologist Central Middx Hospital

1. There are more than 10,000 patients with sickle cell disease (SCD) and ß thalassaemia major (and intermediate) across London

2. The majority are domiciled in North West or East London.

3. A number of hospitals have appointed (are appointing) specialists in the field including Central Middlesex, Hammersmith, St Mary’s (Charing Cross has an associate specialist), University College, the Whittington, the North Middlesex, the Royal London and Newham, Kings College, Guy’s and Lewisham. This has generally resulted from high patient throughput and perceived need.

4. 10% of children with sickle cell disease suffer stroke (most common cause of stroke in children) with a further 20% suffering sickle damage to their brains such that they will under perform.

5. There is therefore a need for specialist rehabilitation services, imaging and neuro educational services.

6. Most patients complain that a major need is an integrated social care support packaged along with housing, education and health provision.

7. Psychological support can reduce dependance on the health services e.g. cognitive behavioural therapy (CBT).