Agenda item

Report of the Head of Democratic Services

Craig Galpin and Chrissie Wells of OSCAR Nottingham (Organisation for Sickle Cell Anaemia Relief) gave a presentation on the disorder and the organisation’s work in Nottingham, addressing the following points:

(a)  Both Sickle Cell Disorder (SCD) and Thalassaemia Major (TM) are related inherited blood conditions affecting red blood cells, primarily affecting people with family backgrounds in in areas where malaria is or was prevalent;

(b)  It is estimated that there are 250,000 SCD carriers and 214,000 TM carriers in the UK. There is no current information on prevalence in the East Midlands, but in 2009 there were 320 SCD and 35 TM sufferers diagnosed in the region;

(c)  In Nottingham, OSCAR provides non-medical support to SCD and MT sufferers and their families. It also runs the WHY (Health and Wellbeing for You) Project to help address wider Black and Minority Ethnic health inequalities, and engages in education and awareness raising activities;

(d)  OSCAR has trained 120 Police custody officers from across Nottinghamshire on the care of people with SCD and TM, and it is hoped this service will be rolled out nationally. It also works closely with health and housing partners to improve outcomes and opportunities for sufferers;

(e)  The organisation gave a presentation to the All Party Parliamentary Group for Sickle Cell and Thalassaemia, informing it of a pilot screening project commissioned by Nottingham Clinical Commissioning Group Norcomm Cluster Group;

(f)  OSCAR Nottingham’s main challenges going forward include helping secure sustainable social and welfare support for people with blood disorders, and to identify further funding streams and efficiencies for general health and wellbeing through bringing together health and social care.

The Panel thanked Mr Galpin and Ms Wells for their informative presentation, and made the following points:

(g)  In response to a Panel member’s query, Ms Wells explained that the symptoms include chronic pain, fatigue, dehydration, shortness of breath and palpitations. Because symptoms can be episodic, it can be difficult to maintain jobs or education opportunities, or find appropriate housing that does not exacerbate symptoms;

(h)  It was suggested that OSCAR Nottingham should inform the review of Nottingham’s Joint Strategic Needs Assessment to help identify prevalence and gaps in provision;

(i)  It was suggested that GPs sometimes misdiagnose the conditions. While babies and pregnant women are screened, being diagnosed as a carrier of the conditions is not considered a major medical issue by some doctors. Ruth Rigby of Healthwatch Nottingham advised that issues about specific GPs should be referred to them to help ensure a consistent approach;

(j)  The Chair advised that there is a specialist team of NHS nurses doing outreach work in Nottingham to address blood disorders, including SCD and TM;

(k)  OSCAR Nottingham is involved with the social element of a medical research project on SCD and TM being conducted by De Montfort University;

(l)  A Panel member undertook to raise awareness of the conditions’ symptoms among Trade Union colleagues;

(m)  City Council actions to license the private rental housing sector will help improve housing conditions in Nottingham, alleviating SCD and TM sufferers’ symptoms.

RESOLVED to note the presentation and Panel members’ comments.