Sickle Cell Anaemia (Hansard, 6 March 2000)

§ Jane Griffiths (Reading, East)

I am grateful for the opportunity to introduce this debate on the important and worrying subject of sickle cell anaemia. The House will know that it is a genetically inherited condition and that it cannot be caught or contracted. The person suffering from it will always be anaemic, but, at times, there may be a crisis in the condition which leads to very severe pain.

The pain is caused by the red blood cells in the affected person becoming sickle shaped—hence the condition's name—and therefore unable to carry sufficient oxygen. One side effect of the condition is that the person suffering from it is immune to malaria because malaria mosquitos cannot attack the sickle-shaped cells. The main causes of the condition going into crisis are many, but they include strenuous exercise and any trauma to the body, such as the contraction of a severe virus, being subject to general anaesthetic, suffering from a fever or pregnancy. The cause of the crisis in sickle cell anaemia that may arise as a result of pregnancy is not fully understood, but it is not uncommon.

Sickle cell trait, which may or may not involve anaemia, is found in about 10 per cent. of people of Afro-Caribbean origin and more frequently in those of Nigerian origin.

Sickle cell C trait, in which people may well have no health problems at all but will pass the trait on to their children, is found in about 2 per cent. of people of Afro-Caribbean origin, and more often in people of Ghanaian origin. Thalassaemia trait, which is related and can cause a sickle cell condition, is found also in about 2 per cent. of people of Afro-Caribbean origin, and more frequently among people of Mediterranean origin.

In all our communities, therefore, it is necessary to understand that the condition is present from birth and often seriously affects children. One of its key symptoms is severe, disabling pain that onsets suddenly. Awareness of the condition is needed among health professionals. Although midwives' handbooks have considerable information about anaemia in general, as it is very common in pregnancy, they have little information specifically about sickle cell anaemia, yet that condition often goes into crisis in women in early pregnancy. No one knows why.

Evidence also shows that, in recent years, when people have visited their doctor or gone to hospital suffering from symptoms relating to sickle cell anaemia, they have been asked, "How long have you had sickle cell condition?" That indicates that not all doctors even know that it is an inherited condition that cannot be contracted. I had an e-mail on that subject today from a woman who said that her partner, a sickle cell sufferer, had been asked that question very recently.

Awareness of sickle cell is badly needed also among education and other professionals. Children who regularly suffer pain and illness are likely to have to miss school and their behaviour may well be affected. Sickle cell can also cause kidney problems, which involve many visits to the lavatory, and teachers can be less than tolerant of that if they are not fully aware of the reason for it. There is a 839 worryingly high incidence of exclusion from school among Afro-Caribbean boys, some of whom may well have sickle cell condition. They may not want to talk to teachers or anybody else about it, but it can cause problems throughout their education.

Teachers these days are routinely made aware of, and told how to deal with, asthma attacks, nut allergies and other severe allergies, which are suffered by an increasing number of primary school pupils. However, they are not routinely made aware of, and told how to understand and deal with, people with sickle cell anaemia, even in areas where the Afro-Caribbean population is high. This is therefore a public health issue that should concern us.

Awareness is needed also among the population at large and those in authority. I had a visit from a constituent whose daughter died when her sickle cell anaemia went into crisis early in her pregnancy. I shall not ask the Minister to look into the case of a particular constituent at this time, but I mention it because it is relevant to the wider issue. My constituent's daughter died from complications of pregnancy brought on, it seems, by sickle cell condition. The insurance company refused to pay out on her policy because, it said, she had a life-threatening condition which she had failed to declare.

I discussed this rather complicated issue, on which the insurance profession does not seem to have a clear policy, with a number of people in the industry. There is a worryingly lack of awareness—I shall not use the word "ignorance"—of the condition. One person working in insurance, but not for the company with which the young woman who died had a policy, said, "I am not surprised that people in the insurance industry do not know about sickle cell because it mostly affects Afro-Caribbean people and not many of them buy houses." That ignorant statement staggered me.

My constituent's daughter did not die from sickle cell anaemia; she had sickle cell. Many people live to a great age with the condition, but have episodes of ill health throughout their life.

Will the Minister look seriously at how we can ensure that all professionals, especially those who work with children and pregnant women, are fully aware of the symptoms and dangers of sickle cell? Constituents and others have told me that professionals do not care and that, because the condition affects mainly ethnic minorities, people do not think that it matters. I know that my hon. Friend will agree that it does matter. In general, health professionals take the condition seriously. The problem is more that those who work with children and pregnant women may not be fully aware of it.

Many older people in ethnic minority communities who have sickle cell were, in the past, heavily prescribed pain-killing drugs for the bouts of pain that come with the condition and, sadly, have become addicted to those drugs. I am reliably informed that doctors no longer prescribe pain-killing drugs in that way, but there are people in their middle years living with addiction to painkillers and the extra problems that it brings on top of their sickle cell condition.

Will the Minister consider those issues seriously and explore ways to ensure that education, health and other professionals are clear about the implications of sickle cell condition for the health of the people with whom they 840 are dealing? They should realise that the condition can be managed and that the people who have it need understanding and help.

§ The Parliamentary Under-Secretary of State for Health (Yvette Cooper)

I congratulate my hon. Friend the Member for Reading, East (Jane Griffiths) on choosing to discuss such an important subject in her Adjournment debate. The raising of these issues is particularly timely given the questions that the Department is considering at the moment, which I shall try to cover in my response.

I agree with my hon. Friend that it is completely unacceptable to argue that sickle cell anaemia should be taken less seriously, or should be less well understood, simply because it is a problem faced by people from black or ethnic minority communities. That is wholly unacceptable to the Government. We are committed to tackling health inequalities, including those faced by black and ethnic minority communities, which include sickle cell anaemia.

My hon. Friend has raised some very important issues. She is right to say that sickle cell anaemia is an inherited blood disorder affecting haemoglobin, which enables red blood cells to carry oxygen around the body. In sickle cell anaemia, the red blood cells tend to change from the normal flexible round shape to a rigid half-moon or sickle shape, causing a blockage in the blood vessels and preventing the circulation of oxygen. That can lead to tissue damage in, for example, the eyes, the lungs, the spleen and the hips.

As my hon. Friend said, the pain of such a crisis can be intense, and usually lasts a few days. Patients with severe crises may require hospital admission for treatment with painkillers and rehydration. People with sickle cell disorders are also vulnerable to infections such as pneumonia and meningitis.

Sickle cell anaemia primarily affects people of African and Afro-Caribbean descent, although it is also found in those from Mediterranean, middle eastern and Asian backgrounds. There are more than 6,000 people with sickle cell disorders in the UK. In addition, around 120,000 people carry the trait for sickle cell anaemia, which means that they may pass on a gene for the disorder to their children. Carriers usually remain healthy, but it is important that their trait is recognised as they may require more oxygen in certain situations such as undergoing a general anaesthetic or participating in activities such as scuba diving or high altitude sports.

Generally, the disorder is managed at home: children may take antibiotics throughout childhood, and mild crises can be treated at home with painkillers. My hon. Friend is right to raise the question of education. Education is needed for those with the disorder, and their families and carers, to minimise risk factors that can trigger a crisis, such as sudden temperature change or dehydration. The prognosis for a child who is diagnosed with the disorder today continues to improve.

In 1994, the Standing Medical Advisory Committee set up a working party which produced a report on sickle cell, thalassaemia and other haemoglobinopathies. The report was widely distributed and provided information to enable the national health service to achieve the best possible care. 841 It gave a focus for further debate, development and collaboration. Several initiatives have followed from the report.

Following wide consultation, the cards that are carried by patients who have been tested for sickle cell anaemia and other haemoglobinopathies have been redesigned and simplified. In December last year, the Department of Health issued a multi-purpose single card to replace the three previously used, as recommended in the SMAC report. The card provides the result of the test. Copies are available free of charge to haematology departments for issue to patients.

The card speeds up the process for patients presenting at the accident and emergency department in a crisis, as it provides details of their disorder and treatment. It is also helpful to other health care workers in identifying people with sickle cell disorder or those who carry the trait. For example, midwives should find the card valuable in directing genetic counselling for those at risk and dentists will want to consider the need for additional oxygen.

The SMAC report also raised issues about counselling and screening. It is important, for example, that prospective parents understand the risk of their children being affected. If both parents have the condition, their children will inherit it. If one parent has the disorder and the other carries the trait, the probability is that half their children will inherit the disorder and half will carry the trait. Preconceptual and antenatal counselling aim to allow parents from high-risk groups to make properly informed choices.

Promoting the well-being of children and young people with sickle cell anaemia extends beyond the NHS and social services. Joint working with the Department for Education and Employment is absolutely essential. We recognise that ensuring access to effective education is a vital part of looking after the long-term health of any child with a chronic medical disorder. Our two Departments have clear joint guidance on supporting pupils with medical needs in schools.

Support also includes fostering a spirit of inclusion by improving the awareness of teachers and other pupils. One key tool, which we have only just begun to introduce, is the healthy schools programme. It has a family of websites, known collectively as "Wired for Health", which provides online access to health information. Through the Health Education Authority, we have been working with the Sickle Cell Society to provide accurate and appropriate information targeted at different groups in the education setting.

"Mind, Body and Soul", the website aimed at 14 to 16-year-olds, includes information prepared by the society. It is now developing text for the new site for 11 to 13-year-olds, which will go live at the end of this month. After that, we expect to put information geared specifically to the needs of teachers on the main teacher website, "Wired for Health". My hon. Friend is right to identify the serious issues that may arise if teachers or other pupils do not sufficiently understand the problems faced by those with sickle cell anaemia.

The healthy schools programme has also established the national healthy schools standard: an accreditation process for the local education and health partnerships. The whole-school approach promoted by the standard includes 842 provision of support for pupils' health conditions. That complements guidance on supporting pupils with medical needs.

Unfortunately, we know that children and young people with sickle cell anaemia will sometimes miss school because of their health problems. We are reviewing, with the DFEE, our guidance on the education of sick children. We aim to issue draft guidance for consultation later this year. I shall ensure that my hon. Friend's points are taken into account.

The main subject that my hon. Friend raises is education about the disorder. Education is an essential factor in the effective management and treatment of sickle cell anaemia. It is vital that we provide at-risk communities, patients, their families and health care professionals at all levels with proper information about sickle cell anaemia, the risks and the consequences for those who suffer from it.

We have been working with the haemoglobinopathy societies to draw up proposals for an awareness campaign targeted at areas with high densities of people at risk of haemoglobinopathies. The proposals are under consideration in my Department. Possible developments include a major mass media exercise directed at Afro-Caribbean and Asian communities, through specialist media catering for black and minority ethnic groups and the general media.

The campaign proposals involve voluntary organisations working in the field, four of which are concerned with sickle cell anaemia and research, as well bodies such as schools, probation services and employers, accident and emergency departments and primary care teams. We need to promote awareness of haemoglobinopathy disorders and the options for screening, prevention and treatment. That means developing resource materials for health professionals to inform future good practice. It also means raising awareness of the disorder among statutory bodies and policy makers.

The partnership element of this campaign is extremely important, with co-operative working by voluntary bodies and feedback from patients and communities helping to shape future services. The expert patient concept is especially suitable for a condition such as sickle cell anaemia and will be invaluable in improving management of the disorder and outcomes for patients and their families.

My hon. Friend is right to say that it is important that health care professionals are well informed about the disorder so that they can give appropriate treatment. Notification about the new haemoglobinopathy cards was directed to all GPs and to haematology units, maternity, accident and emergency and dental departments, health visitors, dental officers and counsellors.

The training of doctors is designed to equip them to deal with the problems they might encounter both in hospital and in general practice. Learning must be life long and cannot cease at the end of formal training. To provide the best possible service to their patients, doctors should keep up to date with advances in patient care and continually review and improve their knowledge, skills and abilities. The English National Board for Nursing, Midwifery and Health Visiting approves a post registration study programme on the care and management of adults and children with sickle cell, 843 thalassaemia and related disorders. It is designed to increase the knowledge and skills of nurses to enable them to meet the health care needs of those with sickle cell and their families.

Hospital trusts serving communities with a high incidence of haemoglobinopathies often have specific protocols for their staff to ensure that they can recognise sickle cell anaemia and are able to help patients quickly, especially with pain relief. We need to ensure that best practice is extended to all trusts that deal with patients who suffer from sickle cell anaemia. The haemoglobinopathy societies have informed us that the facilities for treatment and counselling are often under-utilised. We need to make sure that people are able to make use of the services provided.

I would like to take this opportunity to say that voluntary organisations play an absolutely vital role in this field. We are very grateful for their help with the proposed health awareness campaign currently being discussed, and for the Sickle Cell Society's work for "Wired for Health". Those organisations provide information, advice and support for those affected by 844 sickle cell anaemia—patients and their families—and carry out research into the disorder. My Department recognises their success in spreading knowledge and understanding of the disorder, and we provide practical support, including financial assistance, to help them to continue their work.

Sickle cell anaemia is a condition that we take extremely seriously. My hon. Friend's points about raising awareness were well made and are well taken. I hope that I have assured her that these issues are under active consideration. I will ensure that her views are taken into account when final decisions are made shortly about possible campaign proposals for raising awareness of sickle cell anaemia.

Improving treatment and advice is critical for the people involved, and for tackling the health inequalities faced by black and minority ethnic communities, which we in the Department take extremely seriously. I thank my hon. Friend for providing the opportunity for a useful and informative debate on an important subject.