EXECUTIVE SUMMARY

  Sickle Cell disease is currently the number one inherited severe genetic disorder in the United Kingdom. It affects mainly people of African and Caribbean origin and is the commonest cause of stoke in childhood. Sufferers who are persistent users of hospitals and the NHS suffer everyday as a result of the vast inequalities within the health system and we are glad to have the opportunity to make a contribution to the work of the select committee and urge the committee to view the case of sickle cell and stroke as one that demonstrates the vast amount of work that needs to be done to redress inequalities as this condition has vast implication across, child poverty, health, education, social care, housing and disability access amongst other things that are currently not being addressed.

  By not ensuring the provision of optimum care and treatment for children with conditions such as sickle cell that overwhelmingly affect minority communities, the Department of Health is inadvertently penalising ethnic groups which already suffer serious health disadvantages. As such SCYSS believes this matter is extremely pertinent to the government's commitment to reducing health inequalities.

  SCYSS therefore recommends that the Health Select Committee consider how conditions such as sickle cell affect the health outcomes of certain ethnic groups during its inquiry. The Committee should consider how the Department of Health could reduce health inequalities caused by sickle cell disease by enforcing national guidelines.[273]

INTRODUCTION

  Sickle Cell and Young Stroke Survivors (SCYSS) was set up in June 2005 by a parent of a sickle cell stroke survivor. She was appalled by the treatment that her son received and the lack of coordination between a wide range of services who failed to take responsibility to provide streamlined care and support. The organisation now has registered charity status.

  The charity provides advice, support and advocacy for children, young people and their families that are affected by sickle cell disease and Stroke.

  Sickle Cell disease is a genetic condition that affects mainly people of African and Caribbean origin. It causes the red blood cells to be starved of oxygen causing them to become sickle shaped. This can result in blockage in blood vessels which can cause severe pain, damage to vital organs including the brain resulting in strokes and possible death.

HEALTH INEQUALITY

  SCYSS welcomes the Select Committee's inquiry into health inequalities and is pleased to submit evidence to the Committee.

  Sickle Cell is a condition that affects people of African and Caribbean origin. As Sickle Cell is the commonest cause of stroke in childhood, children of these ethnicities are at greater risk of stroke than other groups.

  By not ensuring the provision of optimum care and treatment for children with conditions such as sickle cell that overwhelmingly affect minority communities, the Department of Health is inadvertently penalising ethnic groups which already suffer serious health disadvantages. As such SCYSS believes this matter is extremely pertinent to the government's commitment to reduce health inequalities.

  SCYSS therefore recommends that the Health Select Committee consider how conditions such as sickle cell affect the health outcomes of certain ethnic groups during its inquiry. The Committee should consider how the Department of Health could reduce health inequalities caused by sickle cell disease by enforcing national guidelines.[274]

  Responding to the specific terms of reference in the inquiry, SCYSS has the following comments:

The extent to which the NHS can contribute to reducing health inequalities, given that many of the causes of inequalities relate to other policy areas eg taxation, employment, housing, education and local government;

  While recognising that health inequalities have many causes, the NHS has a large contribution to make in reducing health inequalities. The NHS needs to respond to the needs of the local population in order to contribute to the reduction of Health Inequalities. This includes responding to the particular needs of ethnic minorities, such as those people of African and Caribbean origin who have sickle cell disease, to reduce health inequalities based on ethnicity.

  SCYSS is aware of many examples related to sickle cell where the NHS has not responded to the needs of this group of patients. Some examples include lack of provision of treatments and care for sickle cell patients including:

—  TCD scanning for the prevention of stroke

—  Funding battles for oral iron chelation which is vital to prevent instant death by heart attack in young sickle cell stroke victims

—  Lack of coordinated follow up treatment for young stroke survivors

—  Lack of availability of MRI scans within 48 hours of a child being diagnosed with a stroke.

—   Lack of implementations of recommendations as stated in The Royal College of Physicians guidelines on stroke in children.

—   Lack of short and long term physiotherapy care plan resulting in preventable permanent disability and mobility

—  Lack of a structured response by Department of Education to the need of young stroke survivors

  Sickle Cell Disease and its complications are often ignored in mainstream NHS and Department of Health initiatives, for example the recent National Stroke Strategy which made no mention of the link between Sickle Cell and risk of stroke in children, and the fact that stroke can often be prevented in these cases through identification of those at risk and treatment by blood transfusion.

  We believe that the NHS needs to do more to reduce the poor health outcomes of sickle cell patients, particularly children with the condition, who are at risk of stroke.

The distribution and quality of GP services and their influence on health inequalities, including how the Quality and Outcomes Framework and Practice-based Commissioning might be used to improve the quality and distribution of GP services to reduce health inequalities;

  No Comment.

The effectiveness of public health services at reducing inequalities by targeting key causes such as smoking and obesity, including whether some public health interventions may lead to increases in health inequalities; and which interventions are most cost-effective;

  No Comment.

Whether specific interventions designed to tackle health inequalities, such as Sure Start and Health Action Zones, have proved effective and cost-effective;

  Widely available targeted education and information on genotypes targeting groups affected by sickle cell disease will be a worthwhile investment as a preventative measure.

The success of NHS organisations at co-ordinating activities with other organisations, for example local authorities, education and housing providers, to tackle inequalities; and what incentives can be provided to ensure these organisations improve care

  As an organisation our experience in representing various parents is one of a lack of coordination or co-operation by the NHS with schools (provision of statement, SEN, reporting of silent strokes etc), local authorities, social services—providing respite, Housing—providing adequate housing for now disabled children and even coordination between departments and trusts within the NHS, (eg. lack of coordination of appointments etc).

The effectiveness of the Department of Health in co-ordinating policy with other government departments, in order to meets its Public Service Agreement targets for reducing inequalities;

  Objective 2 of the Public Service Agreement Targets is to improve health outcomes for people with long-term conditions by offering a personalised care plan for vulnerable people most at risk. Sickle Cell is a long term genetic condition.

  There are currently no long term care plans available for sufferers of sickle Cell. We believe that an establish care plan from the onset will provide a care framework and act as a useful tool and a starting point in tackling some of these inequalities.

Whether the Government is likely to meet its Public Service Agreement targets in respect of health inequalities.

  SCYSS feels that due to the reasons above, the Government is unlikely to meet the Public Service Agreement objective 2, to reduce health inequalities.

January 2008

274   NHS Antenatal and Newborn Screening Programmes "Sickle Cell Disease in Childhood: Standards and Guidelines for Clinical Care" October 2006 and Royal College of Physicians Paediatric Stroke Working Group "Stroke in Childhood: Clinical guidelines for diagnosis, management and rehabilitation" 2004. Back