Motion made, and Question proposed, That this House do now adjourn. -(Mr. McAvoy.)

I thank Mr. Speaker for giving me the opportunity to hold this debate.

I am grateful to the Pernicious Anaemia Society for its help in preparing the debate. This small but ambitious charity is based in my Constituency and has members throughout the world who are working to bring attention to this common but often misunderstood condition.

First, I should like to say a few words about pernicious anaemia, its causes and consequences. The condition is caused by a lack of vitamin B12. Vitamin B12 cannot be produced or stored in the body, and deficiency is caused by a failure to absorb vitamin B12 from the diet. Vitamin B12 is vital for the manufacture of new red blood cells. When it is in short supply, red blood cells are produced in smaller numbers, are abnormally large in size-megaloblastic-and do not last as long as they should; and anaemia develops. While the peak incidence of pernicious anaemia occurs within the 60-plus demographic, it can afflict anyone at any age.

The condition has physiological and mental symptoms. Common physical symptoms include tiredness, fatigue or lethargy; a shortage of breath known as "the sighs"; a swollen tongue and feeling bloated; brittle, easily damaged nails; pins and needles; unaccountable sudden diarrhoea; and an increased sensitivity to sound, scent and taste. Common mental symptoms include "the fogs"-a lack of clarity and focus in everything the sufferer experiences-and irritability, impatience and, often, mood swings. In addition, when vitamin B12 is low, the cells of the nervous and digestive systems may be affected. Undiagnosed or untreated, the condition can lead to damage to the central and peripheral nervous systems with separate symptoms and consequences in itself such as numbness in the limbs, especially the legs; vertigo; balance problems; inability to concentrate; and confusion or forgetfulness.

The most common reason why pernicious anaemia sufferers develop nerve damage is that its insidious nature, coupled with its vague symptoms, can often lead to a late diagnosis. Consequently, nerve damage has often occurred before pernicious anaemia has been diagnosed. The severity of the symptoms depends on how much damage has been done to the central nervous system. Balance problems can make everyday tasks such as showering, dressing and walking a challenge.

It is possible that these symptoms are irreversible, so diagnosis of pernicious anaemia needs to be quick and accurate. However, there are problems with its timely and accurate diagnosis. The disease shares common symptoms with a number of other conditions, and the fact that there is no single definitive test can often mean that a diagnosis is delayed. Many sufferers are misdiagnosed with conditions such as depression, multiple sclerosis, myalgic encephalomyelitis or chronic fatigue syndrome, or with being totally well but feeling unwell.

For some sufferers, a simple blood test can diagnose anaemia and an examination of the red blood cells can determine whether they are larger than normal. If this is the case, a Schilling test, which measures the body's ability to absorb vitamin B12 from the bowel, can determine whether it is pernicious anaemia. However, the Schilling test is no longer widely available. For most people on a normal diet, especially the elderly, a Schilling test is not thought necessary. Instead, a blood test is done to measure levels of vitamin B12. If the levels are low, pernicious anaemia is presumed and treatment started. However, the testing regime is not sufficient for the diagnosis of all patients with pernicious anaemia.

Typically, vitamin B12 deficiency is suspected when an individual presents with megaloblastic anaemia. However, that may occur only in the most severely vitamin B12-depleted individuals. As the Schilling test is no longer widely available, and the other main diagnostic signposts of low levels of serum B12 cannot be relied upon, sufferers can have high levels of serum B12 and still have pernicious anaemia.

The intrinsic factor antibody test, which is used to determine whether the patient is able to absorb intrinsic factor B12 from food, is only about 30 per cent. accurate. A better method of determining whether a patient is B12-deficient is based on their active B12 level, because only active B12 plays a part in the complex biochemistry. If a patient's active B12 level is low, he or she will still have the symptoms of pernicious anaemia even though the total level of B12 will be above the lower threshold for determining deficiency. There is a newly developed test that takes that into account and is widely used in Australia and Germany. Many people there who were not previously considered to be B12-deficient now receive B12 injections, with considerable improvement to their quality of life.

As well as difficulties in diagnosis, there are a number of other issues of concern to sufferers. Pernicious anaemia is treated in this country with injections of hydroxocobalamin, a form of vitamin B12. Patients receive three injections a week for the first two weeks, then one every three months for the rest of their life. More frequent regimes may be used in sufferers who have been diagnosed late and have neurological damage.

The main concern for sufferers is that the UK practice limits patients to an injection every three months, which is not sufficient. In the 1960s the treatment was an intramuscular injection every month. That changed to one every two months in the 1970s and one every three months in the 1980s. The Pernicious Anaemia Society cannot find any evidence that those changes to the prescription were related to new clinical research.

People with pernicious anaemia have widely different needs and respond differently to treatment. For some, an injection every three months is adequate, but for others, weekly or even daily injections may be required. In the UK, however, GPs on the whole stick to the three-monthly injections and feel that they are adequate. They generally refuse to allow more frequent injections. That means that sufferers often find themselves looking elsewhere for more regular sources of B12.

In the UK, vitamin B12 in injectable form is available only on prescription, under the Medicines Act 1968. It is, however, available over the counter in most European countries and readily available using the internet. Many people with pernicious anaemia travel abroad to get top-up injections or order infusions over the internet. That situation is far from ideal, and I know that my hon. Friend the Minister will be horrified to learn about it. It is also extremely expensive and fraught with danger. I am sure that I am not alone in feeling uncomfortable with people ordering any medication over the internet.

Many people with pernicious anaemia also seek help from the private sector, from which B12 infusions can be bought. The form of B12 used is methylcobalimin, an extremely pure form of the vitamin that can be injected straight into the bloodstream. The patient can self-inject using the same needles used by diabetics. Many sufferers claim that if they return to their doctor to request an additional dose of B12, they are offered antidepressants. However, B12 is a harmless vitamin with no side effects, and it is cheaper than antidepressants. The PAS argues that allowing sufferers to self-inject using insulin needles would free up valuable nursing time, saving money from the NHS budget, and provide patients with a treatment regime based on need. It calculates that £20 million a year could be saved in nursing time by allowing patients to self-inject.

The PAS recently presented a petition to the Department of Health via the No. 10 e-petition system, highlighting the problems faced by people with the condition. In its response, the Department acknowledged:

"Too often, people with long-term chronic conditions have been made to fit themselves into the way care is provided locally, regardless of whether that meets their individual needs."

It went on to state:

"Our changes to the NHS aim to deliver the right services where they are needed, working with all involved agencies to provide a seamless package of care."

People with pernicious anaemia are being made to fit in with a treatment that is imposed from the top down. The national service framework for long-term conditions, launched in March 2005, focuses on improving services for people with long-term conditions across England. It states that comprehensive assessment and regular reviews of people's problems should be held and that self-referral would allow people to refer themselves quickly back to services as their care needs change. However, that has not materialised for people with pernicious anaemia.

There are a number of ways that the Department of Health could improve the care provided to sufferers of pernicious anaemia, and a review of the disease's symptoms, diagnoses and treatment is needed. The current treatment regime would benefit from a review relating to its efficacy and cost-effectiveness. Modern, self-administered treatment regimes that are available should be evaluated to save medical staff time and to provide a more efficient treatment regime based on patients' needs.

The misdiagnosis of pernicious anaemia could be reduced by launching an education campaign for general practitioners. It should also be made clear that the current three-monthly injection cycle may not address the needs of every patient and that it should be more flexible. Any review could include a study investigating the feasibility of a return to the monthly dose, which was successfully administered with no side effect to a generation of sufferers in the 1960s.

The review should consider the type of B12 that could be used. Methylcobalamin, which is used in the private sector, is a purer form of B12 that absorbs in the body with better results. The PAS would like sufferers who have a more severe form of pernicious anaemia to have the option of self-injecting daily doses of B12 methylcobalamin. Monitoring such a regime would reveal whether it could be a modern way forward, in which patients can opt for a treatment style that is similar to diabetic provision. It would be helpful if the Department could support the creation of a charity helpline for sufferers, compile the statistics of current misdiagnosis and create a referral service so that sufferers can find the correct medical attention quickly.

The disease affects people in all right hon. and hon. Members' constituencies. An early-day motion highlighting many of the issues raised, tabled by my hon. Friend Dr. Naysmith, has received 73 signatures. I hope the Department considers acting on many of the issues that I have raised this evening. I also hope that it will agree to a future meeting of officials and members of the PAS, so that their concerns can be adequately addressed.

May I congratulate my hon. Friend Mrs. Moon on securing this debate, which is of course on an important subject? Her Constituency has the honour of having the PAS in it, and I am aware of her work with society. She has taken a very close interest in pernicious anaemia and has previously tabled questions on behalf of patients who have that distressing condition.

As my hon. Friend has so eloquently described the condition, I will not go into the details again, but there are some rarer causes of vitamin B12 deficiency. The root cause of pernicious anaemia, however, is the deficiency of B12 due to the lack of what is known as the "intrinsic factor" needed for its absorption.

The inability to absorb vitamin B12 orally means that treatment in an injectable form is required, and because the lack of the intrinsic factor cannot be reversed, treatment must be continued for life. That is to avoid the problems associated with uncorrected anaemia as well as the possibility of damage to the central nervous system that can result from prolonged vitamin B12 deficiency.

My hon. Friend mentioned the role of GPs. In common with a wide range of chronic conditions, the diagnosis and treatment of pernicious anaemia is generally best carried out at primary care level. It is for general practitioners to diagnose the condition, arrange for blood tests and prescribe the treatment that they consider most appropriate. General practice and primary care have increasingly showed themselves to be the preferred settings for discussing and deciding on such treatments, and patients' preference has been supported by increased investment by this Government in a wide range of programmes to expand services locally.

I recall my days as a district nurse when I provided this facility locally to one of my patients who was a pig farmer. He was reluctant to come to the surgery, so the district nurse went to the pig farm. In fact, the patient was very reluctant to leave the pigs, so-in true district nurse style-my wellingtons came out of the boot of my car and I performed the service where the patient thought it most appropriate. I then went into the farmhouse to wash my hands and was given a cauliflower for my trouble. I remember those days with great warmth, but the advancement in primary care has made it much more possible for patients with chronic conditions to be treated at home or very close to home.

It has been suggested that GPs are insufficiently aware of the prevalence of pernicious anaemia that they may fail to diagnose the condition and that the Department of Health should take steps to increase awareness. However, assessments of medical professionals and their awareness of conditions such as pernicious anaemia are not matters for the Department of Health. It would be for the relevant specialist professional bodies, such as the Royal College of Pathologists, to provide guidance and professional development on matters relating to haematology. The Department of Health has not issued any recent guidance to general practitioners on the diagnosis or treatment of pernicious anaemia. Nor has the National Institute for Health and Clinical Excellence, to whom the task has now been given.

I am aware that some patients take the view that injections should be offered more frequently, or that other treatments should be offered, and that patients may become understandably very distressed if they believe that their individual needs are not being taken fully into account. Some of the examples that my hon. Friend gave are very worrying. However, I do think that in this and in other cases, we must rely on GPs using their training, professional judgement and the evidence available to them to decide what treatment they consider appropriate, taking into account the particular needs of the person concerned. I hope that the Pernicious Anaemia Society stresses to its members that they must go to their GP and have a proper clinical assessment.

I know of the work of the Pernicious Anaemia Society in raising public awareness of pernicious anaemia and also of its proposals concerning diagnosis and treatment of the condition. I am aware that the PAS organised a parliamentary reception last week, and I apologise again to my hon. Friend for being unable to attend. The early-day motion in the name of my hon. Friend Dr. Naysmith has attracted over 70 signatures. It raises five main points and it may be helpful if I respond to each of these in turn, before covering the other points raised by my hon. Friend the Member for Bridgend.

The early-day motion states that there are fundamental problems with the diagnosis and treatment of vitamin B12 deficiency and pernicious anaemia. When vitamin B12 deficiency has caused anaemia, its diagnosis is not generally difficult, and I am not aware of significant problems of under-recognition. What people sometimes say, however, is that they felt unwell for some time before developing anaemia, and they attribute that to the early stages of vitamin B12 deficiency. Although that may be true, the difficulties of very widespread testing of the many patients with non-specific malaise and tiredness that would be necessary to detect a few people with very early vitamin B12 deficiency make this unlikely ever to be an appropriate policy. When anaemia is present, my understanding is that most patients respond well to treatment through quarterly injections of vitamin B12 and are able to get on with their lives, despite the inconvenience. I am aware of the discomfort of regular treatment and the impact of the condition. I am told that the injection is very painful because of the nature of what is being injected.

I am aware that some individuals with pernicious anaemia do not believe that sufficient heed is paid to their particular wishes regarding the nature and frequency of treatment. However, that is a matter for clinicians and patients to decide, taking into account personal circumstances, and professional knowledge and experience. Some patients might wish to play a greater role in their own care, and I would encourage that. The personal experiences of individual patients need to be a significant factor in these discussions and decisions about treatment.

The early-day motion calls for a review of the efficacy and cost effectiveness of current treatment for pernicious anaemia. The Government established the National Institute for Health and Clinical Excellence to provide authoritative, independent advice to the NHS on different health-related interventions and forms of care. That is to increase fairness in access to treatments, to be a national source of robust clinical guidance and to speed up the uptake of cost-effective treatments in the NHS.

There is a clear process for the selection of topics for referral to NICE's work programme and final decisions on that work programme are taken by Ministers. I understand that a number of topic suggestions have been made around the diagnosis and management of pernicious anaemia, including one from the PAS itself. NICE is considering those proposed topics against its published criteria for possible inclusion in future work. However, I hope that my hon. Friend appreciates that NICE cannot advise on every condition or aspect of treatment, and that this topic will need to be considered alongside all the other competing priorities for NICE guidance.

The early-day motion calls for pernicious anaemia to be included within the national service framework for long-term conditions. As my hon. Friend is aware, we published the framework in 2005. It is a 10-year plan to address inequities in access, a lack of integrated service provision, work force shortages-if there are any-and variations in the quality of care across the country. The framework focuses on neurological conditions, and its quality requirements are based on evidence from services for people with neurological conditions. That focus on neurology highlights and sets in a clear context issues that are also relevant to the millions of people living with other long-term conditions, including pernicious anaemia.

I understand that the early-day motion proposes that treatment for pernicious anaemia should be more flexible and responsive to the needs of patients. The Government are committed to supporting patients in taking control of their own health and in the management of their own care. I am aware that some patients with pernicious anaemia might prefer to have more frequent injections or other forms of vitamin B12 to be administered by patients. Again, however, I am sure that my hon. Friend will understand that those are matters for individual patients to discuss with their general practitioners; it is not for the Department of Health to specify regimes of care in general practice-thank goodness!

The early-day motion also proposes that there should be a review of symptoms, diagnosis and treatment. As I have said, since coming into office in 1997, the Government have established a series of national service frameworks and other clinical strategies looking at diagnosis and treatment of major diseases. Through the NSF approach, we have substantially improved mortality rates and eased the burden of ill health caused by major diseases.

We recently announced our intention to produce a clinical service strategy for liver disease and we will shortly be publishing a draft strategy for chronic obstructive pulmonary disease. However, we are aware that not every service area can be identified as a priority suitable for a national service framework or clinical service strategy. That has been recognised in the establishment of the National Quality Board, which is a key element of the NHS next stage review led by Lord Darzi. All recommendations for service reviews or strategies must now be considered by the National Quality Board, which will advise the Government.

This is a long overdue debate, which my hon. Friend has been requesting for some time. I congratulate her on raising the subject. I also welcome the activities of the Pernicious Anaemia Society in raising awareness of the condition among the public and clinicians. The society may wish to make representations to NICE about the review of treatments for the condition and to the National Quality Board. I acknowledge my hon. Friend's request for the society to meet officials and I will ask officials to arrange that at the earliest opportunity.

Most people who have developed pernicious anaemia receive excellent support from their GPs in diagnosis, treatment and other forms of support. However, I cannot let this debate end without mentioning the district nurses, whom I believe will support their patients in the community to the best of their ability and follow the example set by this Minister, because patients are patients, wherever they happen to be.

Question put and agreed to.

House adjourned.