Skip to main content

Health: Sickle-Cell Disease

Volume 726: debated on Monday 14 March 2011


Asked By

To ask Her Majesty’s Government what measures are in place to ensure that paramedics and ambulance crews across the country are adequately trained in the diagnosis and treatment of those with sickle-cell disease.

My Lords, addressing the training needs of health professionals working with patients with sickle-cell disease is the responsibility of the appropriate regulatory body. They set standards for the preregistration training, approve the education institutions that provide training and determine the curricula. Where a health profession is not regulated, it is the duty of the employer to make sure that the individual has the appropriate level of training to perform the duties required of them.

I thank my noble friend for that Answer. I am sure he is aware that sickle-cell disease is now the fastest growing genetic blood disorder in England. Some 300 babies are born with the condition every year and yet there are many misunderstandings about diagnosing a sickle-cell crisis. Is my noble friend aware of the recent tragic death of a young girl who died of a sickle-cell crisis? Apparently, during the crisis, she had soiled herself and, allegedly, the emergency crew who came to her home refused to treat her and to take her to hospital because of the messy state in which they found her. Does my noble friend agree with me that this underlines the urgent need for training, not just for paramedics but for all emergency crews, so that that never happens again? Will he assure the House that best practice standards and guidelines with regard to sickle-cell disease are enforced right across the NHS? I declare an interest as a patron of the Sickle Cell Society.

My Lords, I am aware of the tragic case to which my noble friend refers, which is of course the subject of an investigation at the moment. The facts, as I am aware of them, suggest that the failings that occurred in that case were more to do with poor practice than a lack of training, although we will see what emerges from the inquiry. However, I can tell her that there is national guidance on the symptoms and emergency treatment of people with sickle-cell disease, published by the Joint Royal Colleges Ambulance Liaison Committee. All ambulance crew staff receive training in the assessment and management of patients with sickle-cell conditions in line with those guidelines and further national guidance was issued to staff in 2009. It is regularly updated and it is taken very seriously.

I am in danger of giving the noble Lord the wrong answer and, if I do, I shall regret it. I had better write to him.

My Lords, I declare an interest as chairman of the All-Party Parliamentary Group on Emergency Ambulance and Paramedic Services. The College of Paramedics is very aware of the skills levels of ambulance staff. Will the Minister consider the use of badges to identify staff according to their registration status, so that all concerned parties are enabled to make reasonable assumptions about their abilities as regards treatment and overall incident management?

My Lords, I am aware of the suggestion to which my noble friend refers. The wearing of badges is very much a matter for local determination. Clearly, it is desirable that there should be consistency across the country. I understand that there is a regular meeting of the chief executives of ambulance trusts under the chairmanship of Peter Bradley, the London Ambulance Service chief executive. I suggest to my noble friend that the proposal is put to Mr Bradley as one that the joint chief executives could look at.

My Lords, does the Minister accept that it is not simply the health service that needs education about sickle cell but also vulnerable communities themselves that need a great deal of education and knowledge to help them?

The noble Lord is quite right. One of the successes in recent years has been the universal screening programme for sickle cell that has certainly raised awareness among all communities about this devastating condition. The screening programme alerts healthcare professionals to the needs of children with the disease and also enables them to provide the necessary support for families.

Do people who have sickle-cell disease carry any form of card or identification as people with various other conditions do? As a dentist, I know that the definitive test is a blood test. Patients told you they had it, but no one expected you to pick it out in some person coming in the door. I wonder whether there might be a case for having some kind of identification.

I am sure my noble friend’s suggestion is a very good one. I do not think that the practice of carrying identification is by any means universal, but is it perhaps one that could be commended to the relevant patient groups.

One in 10 children diagnosed with sickle-cell disease will suffer a stroke. Unfortunately, a number will die. Those who do not will go on to have further strokes leading to disabilities and cognitive loss. The Minister talked about a screening programme. Do the Government have in mind any plans to get greater public awareness of sickle-cell disease by a public education programme right across the board among all groups in society?

There are several initiatives in train that should raise public awareness. We have asked NICE to produce a short clinical guideline. The National Haemoglobinopathy Registry is being launched. It was a key recommendation of the NCEPOD report a couple of years ago. We are funding many more training posts for registrars, nurse consultants and clinical scientists, and we are developing a special competence framework for nurses. As for raising awareness generally among the public, patient groups have an important part to play there in conjunction with specialist clinicians.