NHS: Standards of Care and Commissioning

Baroness Benjamin Excerpts

Thursday 31st March 2011 Lords Chamber

[Baroness Benjamin]

My Lords, I thank the noble Lord for securing this debate. Sadly, his opening remarks reflect the treatment that my late 80 year-old father received during his last months, which were spent in hospital.

This debate gives me an opportunity to highlight the concerns of those with sickle cell disorder as well as of those working with and for patients with the disorder. I am a patron of the Sickle Cell Society, so I declare an interest. The Sickle Cell Society has a panel of expert medical advisers as well as a board that includes those who suffer from sickle cell disorder. Over the past 30 years, the charity has worked with the NHS and primary care trusts to produce best practice guidance on treatment and care based on clinical research and the experience of those with sickle cell disorder.

Sickle cell is the most common genetic blood disorder in the UK and some 300 babies are born with sickle cell each year. Yet children and adults are needlessly dying from this illness. The two most recent deaths were in the past four months—one as young as four years old. The deaths are due to poor access to services, poor care, poor treatment and generally poor awareness of the disorder. The National Confidential Inquiry into Patient Outcome and Death shows that of the 19 patients it studied who complained of pain on admission to hospital and who died in hospital, nine had been given excessive doses of medication, leading to death from the complications that resulted.

I believe that with the right policies in place and an understanding of best practice standards, treatment and medication, the quality of life for sickle cell patients can be dramatically improved. Will the Minister consider a medical and social awareness campaign, backed up by syllabus changes to medic training at royal colleges? Will he also consider commissioning services to improve the detection and chronic disease management of patients with sickle cell? I am convinced that if these measures were in place, it would save the NHS millions of pounds, prevent many deaths as a result of hospital overmedication and reduce children being absent from school, which produces poor educational performance that in the long term leads to economic disadvantage and benefits claims.

I believe that the doctor-patient relationship is a two-way dynamic. Some changes to the current system are required in terms of GP education, follow-up, and long-term involvement with the management of sickle cell disorder. Patients and healthcare providers should work together in the proactive management of sickle cell disorder, rather than dealing with crises on an unplanned basis as and when they arise.

The current financial state of the NHS and the recent spending review have increased the nervousness of sufferers. Therefore, there need to be reassurances about the funding of provision for sickle cell. Some believe that the abolition of health targets will have a negative impact and that services will not provide fairness and equality of access to healthcare services for all. Therefore, there needs to be NHS specialised services commissioning for those with sickle cell disorder, with provision for practical home-care support, especially home-from-hospital convalescent support to avoid readmission, the training and deployment of a pool of community support care workers, information and counselling to every patient and carrier in every locality, and the monitoring of performance against agreed outcome measures. I believe that the Sickle Cell Society is well placed to assist the Government in achieving these measures.

Sickle cell disorder should be of great concern to society. It needs our full attention because as more and more children are born to parents from different ethnic groups and we become more and more integrated, so the more common sickle cell disorder will become. Sickle cell disorder is now the fourth global public health priority, as declared by UNESCO and the World Health Organisation in Geneva in May 2006. Please let us accord it the priority and respect it deserves.