Pernicious Anaemia and Vitamin B12 Deficiency (Understanding and Treatment)
The next item of business is a debate on motion S4M-02185, in the name of David Stewart, on petition PE1408, which is on the understanding and treatment of pernicious anaemia and vitamin B12 deficiency. This, too, is an extremely tight debate. I call David Stewart to speak to and move the motion on behalf of the Public Petitions Committee. Mr Stewart, you have 10 minutes, but if you are able to take less time, I might fit in back benchers.
16:01
I am pleased to speak on behalf of the Public Petitions Committee in its first chamber debate of this session of Parliament. I welcome the opportunity that has been given to the committee today to highlight the issues that are raised by Mrs Andrea MacArthur in her petition on pernicious anaemia and vitamin B12 deficiency, especially as I understand from the Scottish Parliament information centre that this is the first-ever debate of its kind in the chamber.
PE1408 calls on the Scottish Government to review and overhaul the current outdated and ineffective method of diagnosing and treating pernicious anaemia and vitamin B12 deficiency. The committee initially considered the petition at its meeting on 15 November last year, and we heard evidence from the petitioner, Mrs MacArthur, and from Martyn Hooper, the executive chair of the Pernicious Anaemia Society. The committee agreed to seek time in the chamber for a committee debate on the issues that were raised, so I appreciate the opportunity to have the debate this afternoon.
Vitamin B12, which we normally obtain from food, is important for production of red blood cells and maintenance of the nervous system. B12 deficiency can result in anaemia, with symptoms including fatigue, lethargy, breathlessness, headaches, disturbed vision and mouth ulcers. Some of my committee colleagues will be able to talk in more detail later in the debate about the symptoms and effects of the condition. The most common cause of vitamin B12 deficiency is pernicious anaemia. It is an autoimmune disease in which the body attacks the stomach cells that produce intrinsic factor, which is a binding protein that is needed for absorption of vitamin B12. That leads to vitamin B12 deficiency because the body can no longer absorb it from food.
Diagnosis of vitamin B12 deficiency, or pernicious anaemia, is usually done by way of blood tests. A blood sample is examined for several things, including the amount of vitamin B12 in the blood and the antibodies against stomach cells that might appear in pernicious anaemia. I understand that an alternative test has become available in England—the active B12 test—which measures the amount of vitamin B12 that is present in the form that can be taken up and used by the body. The test appears to address the problem of blood levels of vitamin B12 appearing to be normal when the amount that is available for use by the body is actually very low.
It appears that there are no exact figures available for the number of patients who have been diagnosed. However, in answer to a parliamentary question by Mary Scanlon in August 2011, the minister who is here today—Michael Matheson—advised that an estimated 12,200 people had face-to-face consultations on pernicious anaemia in 2009-2010 in Scotland. In the petition, Mrs MacArthur quotes the Scottish Government’s prescribing data for 2011, and states that about 109,000 patients were identified as having pernicious anaemia. That gives us an indication of the numbers of people involved.
Treatment of non-diet-related vitamin B12 deficiency is normally done through injections of the vitamin. The injections are given every other day for two weeks or, if there are neurological symptoms, until there is further improvement. They are usually then given every two to three months. However, Mrs MacArthur points out in her petition that the prescribing data show that the cost to the national health service of treating those 109,000 people was just over £800,000, half of which was spent on treating just 9 per cent of patients with the least effective form of treatment available, which, according to the petition, is oral tablets. In Mrs MacArthur’s words, it is ineffective because the body is unable to absorb the vitamin B12 in tablet form while the serum levels are elevated, making it appear to the doctor that everything is well.
I understand that vitamin B12 injections are direct and cost around 50p. We heard from Mrs MacArthur that she lodged the petition as a result of her own experiences of being unable to get effective diagnosis and treatment for her own suspected vitamin B12 deficiency. The petition therefore calls for the current diagnosis and treatment procedures that are in place to be reviewed and updated. Mrs MacArthur made the point in evidence that
“Doctors have very little knowledge of the condition, so they stick rigidly to the little guidance on treatment that they are given. The guidance itself is incomplete.”—[Official Report, Public Petitions Committee, 15 November 2011; c 229.]
Mrs MacArthur contends that there are major failings in the treatment and diagnosis of the condition and that many patients are dismissed or treated as being hypochondriac, neurotic or depressed and that failure to get proper diagnosis and treatment only allows the condition to worsen.
The Pernicious Anaemia Society told us that it hears frequently of patients who struggle to get the diagnosis and treatment that they require. Mr Hooper, the chairman of the society, told us that
“Treatment of the condition is so consistently bad that to hear of someone who has managed to get their doctor’s co-operation to treat them more effectively is a most surprising and rare event.”—[Official Report, Public Petitions Committee, 15 November 2011; c 228.]
After considering the petition and hearing the oral evidence from the petitioner, the committee agreed to write to stakeholders to seek their views. We received evidence from a range of organisations, including Highland NHS Board, Lanarkshire NHS Board, Greater Glasgow and Clyde NHS Board, the Royal College of General Practitioners in Scotland and, of course, the Scottish Government. The written evidence that we received was very interesting. The responses are on the petition’s web page and are available to all members, should they wish to consult them for more detail.
In the brief time that is available, I will highlight points from the written submissions that the petitioner feels support the points about inconsistency that she makes in her petition. First, in relation to the tests for diagnosis, NHS Highland writes:
“We accept that the diagnosis of B12 deficiency is not foolproof at the present time.”
Likewise, NHS Lanarkshire states:
“It is well recognised within the Haematology Service that the vitamin B12 assay does not completely reflect the tissue availability of vitamin B12. More complex and detailed assays are available which will more accurately reflect the body’s vitamin B12 state but these assays are beyond the scope of the general Hospital Laboratory at this time.”
Incidentally, Wikipedia tells me that an “assay” is a
“procedure in molecular biology for testing ... the activity of a drug or biochemical in an ... organic sample.”
In contradiction to the first two quotes, NHS Greater Glasgow and Clyde states:
“The current diagnostic tests and treatment are considered by the medical profession to be up to date, accurate and evidence based. There is no question that the current diagnostic methods are ‘outdated or unreliable’.”
I will again quote NHS Highland. It states:
“Whilst we cannot support an ‘automatic trial’ of B12 injections in patients with no laboratory evidence of B12 deficiency, better diagnostic techniques would allow treatment to be targeted appropriately.”
Those points in themselves lead one to believe that there are, indeed, inconsistencies of approach throughout Scotland. They also seem to indicate that there is no consensus across the NHS boards.
However, I was pleased to note that the Scottish Government, in its response, indicates that it takes the issue very seriously and that it is committed to improving awareness, diagnosis and treatment for people, irrespective of their condition. I would like to ask the minister to address in his winding-up speech whether that commitment could be demonstrated by the Government’s reviewing the research that the petitioner refers to as having been undertaken and available for review; by its finding out exactly what is happening to patients in advance of the British committee for standards in haematology’s guidelines on the diagnosis of B12 and folate deficiency, which I understand from the Scottish Government is due to be published in March; and by its working with health boards to raise among health professionals awareness of diagnosis and treatment of the condition.
I welcome the opportunity to debate the issues that have been raised in the petition and I look forward to hearing the views of colleagues from across the chamber this afternoon.
I move,
That the Parliament notes petition PE1408 in the name of Andrea MacArthur on the issue of vitamin B12 deficiency and pernicious anaemia; congratulates the petitioner on her efforts to highlight what it considers to be a concerning issue, and commends the issues raised in the petition to the Scottish Government for further consideration.
I am much obliged to you for coming in before your time, Mr Stewart.
16:09
I congratulate the Public Petitions Committee on securing its first debate—but not its last, I am sure—in this parliamentary session. I have no doubt that it will bring other important topics to the chamber, including matters that relate to my portfolio.
David Stewart was right to say that the Government takes pernicious anaemia and vitamin B12 deficiency seriously. I am committed to ensuring that people are treated with care and compassion and that they are given the support that they need in order to be able to lead more independent and fulfilling lives.
Estimates of the number of people who have pernicious anaemia vary considerably. David Stewart mentioned parliamentary questions to which I have responded. It is clear, however, that pernicious anaemia and vitamin B12 deficiency affect a great many people and that we need healthcare services that can meet all their needs.
We have clearly set out our aim to be recognised as being world-leading in respect of the quality of healthcare services that we provide: the healthcare quality strategy is an important part of our commitment to making Scotland healthier and it is about putting people at the heart of our NHS. We have set ourselves three bold and ambitious shared ambitions for our healthcare services: to deliver care that is truly person centred, safe and effective. The ambitions are based on what people have told us they want from their NHS. Therefore, we want to be able to detect and diagnose pernicious anaemia and vitamin B12 deficiency as early as possible and to ensure that people who have the condition get the right treatment, when they need it. We aim to offer clinicians and people with the condition the tools, guidance and support to make that happen.
I am sure that many members acknowledge that primary care is often the first point of contact for people who are living with pernicious anaemia or vitamin B12 deficiency. General practitioners enjoy a high level of trust and confidence among their patients.
Scotland’s population is getting older, and there is a projected rise in that proportion of the population from some 19.7 per cent to 24 per cent by 2033. The number of people who live with long-term conditions, such as pernicious anaemia and vitamin B12 deficiency, is also set to increase. Through our healthcare quality strategy, we aim to build a healthcare system that recognises and responds flexibly to each person as a unique individual, by building trust and empathy and engaging people in decisions that affect their healthcare and wellbeing. Implementation of the strategy means that there are already on-going improvements in services for people who have a variety of long-term conditions.
In her evidence to the Public Petitions Committee, Andrea MacArthur spoke of her hope that we could
“start a process that leads to the treatment of the condition being overhauled and tailored to the individual patient’s need, rather than the one-size-fits-all policy”.—[Official Report, Public Petitions Committee, 15 November 2011; c 228.]
The “Delivering Quality in Primary Care National Action Plan” aims to do precisely that. In it, we set out the strategic direction for primary care. We say that we want care that is
“increasingly integrated, provided in a joined up way to meet the needs of the whole person”,
and that people should have more power over how decisions are made about the treatment that they receive in the health service. We go on to say that care should be clinically effective and delivered to the individual in the most appropriate way. However, the scale of the challenges that we face and require to address in general practice is stark, given the demographic shift.
An important initiative, which is being taken forward with support from the Scottish Government, is the access to local information to support self-management project—ALISS, as it is commonly known. The project is beginning to draw together valuable information from a variety of local sources, GP practices and voluntary organisations, and to make the information easily accessible, in order to support people who are self-managing their condition.
The Pernicious Anaemia Society will undoubtedly have a valuable role in sharing its knowledge and expertise, and I encourage it to work with Long Term Conditions Alliance Scotland, to ensure that the ALISS project properly supports people who suffer from conditions such as pernicious anaemia and vitamin B12 deficiency.
Presiding Officer, I will finish on that point, to assist with the rest of the debate, but in my closing speech I will try to address specific points that members raise during the debate.
16:14
This is a most interesting debate, which I very much welcome. It is a good innovation, and for petitioners who want an open debate rather simply a report or an acknowledgement it is the right way forward. I hope that this is the first of many such debates, because it enhances the role of Parliament. That is important.
Pernicious anaemia is a suitable topic for the first debate on a petition because the issue is not clear. We do not know the epidemiology of the illness nor its prevalence and incidence. There are wide discrepancies in the figures. That is an important starting point.
The second most important starting point is the survey that was conducted by the Pernicious Anaemia Society. Even though its sample may have been skewed, the fact that 47 per cent of respondents had waited two years or more for diagnoses indicates that all is not well. This is not a situation with which we should be happy.
The Pernicious Anaemia Society has listed on its website the symptoms that people might experience. That list is long and the symptoms are scored: 12 of them score 5; three score 2; and no fewer than 20 score 1. That illustrates the problem for the general practitioner: when one is confronted with such a variety of symptoms, it is difficult to decide on a diagnosis.
The public now expect us to have a medical system in which there is a simple test that defines the condition and allows clear treatment to be given, but of course that is not the case. Doctors need to be aware of the most common symptoms and they need to be able to think of B12 deficiency as being one of the possible diagnoses. To do that, they require the support of good information technology systems so that they can interrogate the symptoms—B12 deficiency may come up on the list of symptoms that are presented.
On the diagnostic tests, I found the Schilling test on the Royal College of Practitioners website, yet the test has been abandoned. If our respected college does not have the most up-to-date information, there is a problem.
The petitioners have suggested that we should adopt the new active B12 test. I find that fascinating because, as a GP, I used to be presented with patients who were being given B12 and were testing adequately for it, but who still had symptoms that they should not have had. From the information that we now have, we know that there is active and inactive B12. It is important that we move forward on tests such as the active B12 test. I hope that the Government can give us a response on that.
There are other tests, such as the anti-intrinsic factor antibody test and the antiparietal cell antibody test, but they display the common difficulties that are faced by medicine in that they have different levels of sensitivity and specificity, which means that they are not like simple dip tests that would allow us to say, “This is pernicious anaemia.”
The inconsistencies, which were recognised in the evidence that was given to the Public Petitions Committee, are sufficient for us to ask a number of questions of the Scottish Government. First, why is there no Scottish intercollegiate guidelines network guideline for pernicious anaemia? It should be placed on the SIGN work table, unless the National Institute for Health and Clinical Excellence guidelines embody the new ones from the British Society for Haematology. We need greater clarity.
We need not just to look at the fact that 47 per cent of diagnoses were delayed, but to ask why there were delays. What caused them? We need to know what review the Government is undertaking of diagnostic testing for pernicious anaemia. In the light of continuing concerns about the validity of thresholds for B12, we need to know whether the active B12 test should be introduced as a priority, not only because the condition itself is unpleasant, but because the neurological consequences—dementia is an increasing problem—can be serious if the condition is left untreated.
What steps has the Government taken to examine the practice team information data to ensure that everyone on B12 injections is—first—adequately monitored and, secondly, treated with folate? That combined treatment is necessary.
16:19
As many members do, I welcome today’s debate—which is the first Public Petitions Committee debate and the first time that this serious matter has been discussed in this session of Parliament. I also congratulate Andrea MacArthur on the tremendous work that she has done in pursuing awareness of vitamin B12 deficiency and pernicious anaemia. I am grateful to the PA Society for highlighting the current serious problems with the way in which PA is diagnosed and treated.
Members will be aware that it is thought that pernicious anaemia affects around one in 8,000 people over the age of 60, with the likelihood of developing it increasing towards the age of 80. It also sometimes affects children and may result in educational problems. It is more prevalent in women than it is in men. Symptoms include tiredness, headaches, breathlessness and heart palpitations as well as mouth ulcers, weight loss and blurred vision. Everyday tasks can become difficult for sufferers, and they often feel isolated.
Pernicious anaemia is caused by a lack of vitamin B12, which is vital for manufacture of new red blood cells. When B12 is in short supply, fewer red blood cells are produced, they are abnormally large in size, and they do not last as long as they should, so anaemia develops.
PA develops when the body becomes unable to absorb vitamin B12 properly from foods such as meat, eggs, dairy products and green vegetables. Normally a protein that is known as intrinsic factor, which is made in the stomach, attaches to vitamin B12 and carries it through the intestinal wall into the blood stream, but in pernicious anaemia, the stomach cells that produce intrinsic factor become damaged, so vitamin B12 is no longer absorbed and a deficiency develops.
The petition that is before us today rightly calls on Parliament to urge the Scottish Government to review the diagnosis and treatment of pernicious anaemia. Reading Mrs MacArthur’s testimony, one cannot fail to be moved by the her account of what she describes as a “forgotten illness”. In evidence to the committee, Mrs MacArthur said—incredibly humbly, in my view—
“solely due to the doctors that I have, I fared well.”—[Official Report, Public Petitions Committee, 15 November 2011; c 238.]
However, it is unacceptable that despite demonstrating the signs of pernicious anaemia for 13 years, Mrs MacArthur was never tested. Indeed the Pernicious Anaemia Society has evidence to prove that today’s doctors do not, in the main, view many of the symptoms that are experienced by patients as being indicative of pernicious anaemia.
The lack of testing that is available to GPs and common misdiagnosis are at the heart of the petition that has led to today’s debate. Coming from a medical background, I fully accept that the symptoms of pernicious anaemia can often be mistaken for those of other conditions, but it is extremely important that GPs become better trained in diagnosis, because prolonged vitamin B12 deficiency can lead to irreversible nerve damage.
Diagnosis of B12 deficiency is difficult for two reasons. First, the lower threshold for determining deficiency is too low, so that patients who have all the symptoms of deficiency are not picked up because they are one or two points above the test’s threshold. Secondly, the test that is available in Scotland does not distinguish between active and inactive B12. The active form plays a part in forming red blood cells, while the inactive form is just that, and the available test does not take into account that the inactive form could be as high as 90 per cent of the patient’s vitamin B12 content.
Also, unfortunately, the classic test that was used to diagnose vitamin B12 absorption—the Schilling test—is no longer available; I was surprised by what Richard Simpson said about the website to which he referred. The test that doctors currently use to look for intrinsic factor antibody is only 30 per cent to 40 per cent reliable and it does not identify those who do not produce any intrinsic factor. That leads to patients who still have a lack of B12 producing a negative test. It is “a mess”, as one professor of general practice is quoted as saying.
The Scottish Government’s response to the committee’s request for its comments on the petition was not entirely substantive. It said that all GPs should be able to manage any patient who presents with pernicious anaemia, but that is clearly not the case. Mrs MacArthur also made the valuable point that PA is often dismissed as being something that only the elderly suffer from or as being merely a vitamin deficiency. That clearly fails to acknowledge what a serious condition pernicious anaemia is, which is why we need the medical profession to acknowledge that.
I will deal with the approach to the treatment of PA and vitamin B12 deficiency in my closing remarks, but for the moment I end by saying that I am glad that my colleagues and I on the Public Petitions Committee pressed for the matter to be brought before members this afternoon.
I thank the opening speakers for their time discipline. If the speakers in the open debate limit their speeches to four minutes, I hope to be able to fit everyone in. I call John Wilson.
16:24
I welcome this debate, which has been secured by the Public Petitions Committee, on pernicious anaemia and vitamin B12 deficiency. I declare an interest, because my wife, who has lived with multiple sclerosis for more than 25 years, was finally diagnosed with pernicious anaemia seven years ago.
The petition is a result of what the petitioner perceived to be major failings in relation to both the diagnosis and treatment of pernicious anaemia and vitamin B12 deficiency. Based on the experiences of my wife and others, I completely agree with the petitioner Andrea MacArthur’s argument that inconsistent treatment, ambiguous testing and inaccurate diagnosis currently stand in the way of effectively managing the condition, which has a huge impact on those associated with it.
As I said during the committee’s meeting on 15 November, which is when the petition first appeared before us, I have had the opportunity over the past few years to speak to members of the MS Society in Lanarkshire. I have been surprised to hear that those who suffer from both MS and pernicious anaemia are subject to a variety of medical treatments by their GPs and other medical practitioners. Indeed, variations in treatment occur not only between, but also within GP practices, with some GPs or practice nurses following the SIGN guidelines and others treating patients on an individual basis, according to need.
It is clear that, while three-monthly treatments, as outlined in the SIGN guidelines, may work for some, they definitely do not work for everybody. That raises serious questions about whether the SIGN guidelines are fit for purpose.
The focus must be on the individual. We must put the individual at the centre of managing symptoms that can have a huge impact on their lives. Every person is different and requires treatment to manage the symptoms associated with their condition, and they can react differently to the medication they receive and the efficacy of the benefit derived.
In written evidence to the committee, NHS Lanarkshire noted that only in exceptional situations would vitamin B12 be administered more frequently than on a three-monthly basis. Based on evidence heard by the committee and on my experience, I suggest that many patients require treatment on a much more frequent basis, depending on the nature of their condition. It is therefore crucial that all relevant best practice guidelines are reassessed to guarantee that patients’ needs are best met.
I look forward with interest to the results of the Pernicious Anaemia Society’s survey of the experience of its members—I understand that it is due to be published this spring. Such research will be critical in moving the debate forward and will go some way to improving our collective understanding of not only the condition as it affects sufferers, but the problems faced by carers in seeking assistance from medical professionals.
In his evidence to the committee, Martyn Hooper, the executive chair of the Pernicious Anaemia Society, stated:
“The test for pernicious anaemia is about 50 per cent accurate, but vitamin B12 deficiency is current in about one in 10 of the population.”—[Official Report, Public Petitions Committee, 15 November 2011; c 232.]
That is extremely worrying.
I realise that pernicious anaemia is a complex condition and that the symptoms can easily be mistaken for other neurological conditions, such as MS. However, problems with testing have resulted in patients having to wait for years to be correctly diagnosed, which can consequently lead to devastating health and social problems.
I thank the Pernicious Anaemia Society for and congratulate it on its production of the film “Living with the Fog”. It is clear that more work must be done to raise awareness of pernicious anaemia and vitamin B12 deficiency. I look forward to continuing to address this debate in committee and to hearing the Scottish Government’s response.
16:29
This is an important subject in itself, but it also raises interesting general questions about the role of the Public Petitions Committee, of the Parliament and of Government in relation to clinical issues.
Politicians certainly have a role to play in representing and championing the concerns of patients, and I congratulate the committee on doing so. We also believe strongly now in a partnership with patients and in the increasing ability of individual patients to have power over the decisions that affect them. That is a feature of the 21st century health service unlike any other in any previous health service. I still believe, however, that we must tread rather carefully when it comes to clinical matters. I am not entirely sure that it is the Scottish Government’s role
“to review and overhaul the current out-dated and ineffective method of diagnosing and treating Pernicious Anaemia”,
to use the words of the petition. At the end of the day, although it is the Government’s role to drive forward improvements in quality—the minister mentioned improving quality in primary care—diagnosis and treatment are matters for clinicians. Guidelines are properly a matter for the royal colleges, NICE and NHS Quality Improvement Scotland.
The correct thing to do is to ask those bodies to consider the issues that have been presented in the debate, while taking full account of patients’ views and in partnership with patients. John Wilson referred to a SIGN guideline but, in fact, SIGN has never produced a guideline on pernicious anaemia. All that exists are criteria in the Scottish programme for improving clinical effectiveness in primary care. Perhaps one thing that the Government should do is to ask SIGN or NHS Quality Improvement Scotland, over which the Government has more direct influence, to consider that matter urgently in the light of the concerns that have been expressed.
It was interesting to read the submissions on the issue, particularly the submission from NHS Lanarkshire. One issue that I homed in on as a matter of primary concern was that of how frequently people with pernicious anaemia should receive injections. There was a lot of debate and controversy about that in the submissions and in the oral evidence session. NHS Lanarkshire’s submission said:
“Most patients who are on 3 monthly vitamin B12 will run with higher than population norms of vitamin B12 levels and these can easily be assayed. Were we to see a patient who ran with lower than normal levels despite ‘a standard vitamin B12 supplementation’ and particularly were they symptomatic, it would certainly be our guidance to consider increasing the frequency of B12 administration.”
That perhaps explains some of the seeming inconsistencies. It certainly suggests that, at least in NHS Lanarkshire, clinicians are willing to look at the specific individual circumstances of a particular patient.
At the end of the day, we in the Parliament cannot give a definitive medical view and nor can the minister or his civil servants. It is up to the clinicians and the bodies to which I have referred to consider the issue. I hope that one outcome of the debate is that they will do so.
16:32
The word “pernicious” originates from the Latin term “perniciosus”, which means destructive and ruinous. Pernicious anaemia is insidious in nature and, if left untreated, can cause severe neurological deterioration, which affects the patient in everyday tasks and leaves them feeling helpless. The disease can be successfully managed and controlled, and even halted or reversed, with effective treatment and early diagnosis. However, many patients find treatment unreachable and inaccessible, especially if the diagnostic tests that are used are inadequate in identifying the condition. That is a major issue that we face.
The unreliable and restricted nature of the test often leads to misdiagnosis and uncertainty among patients. A negative result might not necessarily exclude pernicious anaemia, as the patient might not produce antibodies, because of the absence of the intrinsic factor, and so give a false negative result. That occurs in up to 40 per cent of patients who suffer from PA, which means that too great a proportion of patients are left battling the deteriorative condition without appropriate medical intervention.
New alternative diagnostic methods that offer a more reliable diagnosis are being developed and used. The parietal cell antibody method tests for antibodies that are produced by parietal cells, which manufacture the intrinsic factor. As we have heard, the test is positive in 90 per cent of PA cases. It directly examines the cells that are responsible for the absorbency of vitamin B12 in the small intestine. The new active B12 test provides a specific spectrum of results that directly co-relate with the action of vitamin B12 and which are impossible to obtain with the current test. The new test distinguishes between active B12, which plays a pivotal role in forming healthy red blood cells, and inactive B12.
In response to the petition, NHS Highland described the active B12 test as “an interesting diagnostic test” that
“ideally should be the subject of a Health Technology Appraisal.”
The current test requires an overhaul, and more reliable and adequate techniques must be evaluated and considered by health boards and doctors. The unwillingness of some doctors to test for PA often causes delay and complications in detecting the disease.
Last year, there was an increase of 13 per cent in the number of patients who were diagnosed with the condition. As we have heard, patients may present with a series of common symptoms associated with PA, which are often misdiagnosed. The Pernicious Anaemia Society’s survey showed that some 18 per cent of patients were misdiagnosed with depression and that 11 per cent were misdiagnosed with irritable bowel syndrome. John Wilson has revealed that his wife was also misdiagnosed. Delayed diagnosis damages patient-doctor relationships, undermining confidence in health professionals.
The recommended regime is 1mg of hydroxocobalamin administered every three months by intramuscular injections performed by a nurse. Health professionals are advised to adhere to that guideline; however, treatment varies from patient to patient, and general guidelines often do not meet individual needs. Many patients require more frequent injections, but some doctors are reluctant to vary the regime and, as a result, patients are resorting to other measures to obtain alternative treatment. Those include buying injections from the internet and purchasing online other sources of the medication, including sublingual lozenges, nasal sprays and ointments. Individually designed treatment courses would help to discourage patients from making harmful online purchases and would restore confidence in health professionals where it is lacking.
One of my constituents was recently diagnosed with PA and is concerned about his prognosis. After caring for his sick wife, who had the condition, he was unexpectedly struck down. It is our responsibility and duty to offer him, his wife and all other PA sufferers appropriate care and treatment that will be continually available.
I welcome this very important debate being brought to the chamber and congratulate the Public Petitions Committee on doing so.
16:36
This has been a useful and thoughtful debate in which pernicious anaemia and vitamin B12 deficiency have, at last, been highlighted and championed in the chamber. I mean no disrespect to the Parliament when I say that it is significant that the issue has not been relegated to a members’ business debate, which is sometimes a twilight zone, but has been brought by the Public Petitions Committee to a full meeting of the Parliament.
I welcome the Government’s acceptance of PA as a serious condition and its commitment to early diagnosis. I also welcome Malcolm Chisholm’s emphasis on the partnership approach to the management of long-term conditions. In the few minutes at my disposal, I will concentrate on the treatment of PA.
In her petition, Mrs MacArthur speaks of how her doctor allowed her to try vitamin B12 injections, as she presented with all the symptoms of PA. Sadly, that is not the experience of all patients. Members will have read on the website of the Pernicious Anaemia Society—an organisation that, like others, does tremendous work—of the concerns of many patients who have been told that B12 injections are not justified because they are not deficient enough. Other members have spoken of how testing does not lead to effective treatment. The petition makes it clear that adopting the new active vitamin B12 test would achieve early diagnosis.
Although pernicious anaemia is still treated by vitamin B12 injection, the frequency of administration has changed significantly over the years. When I was in clinical practice, the injections were given monthly. I had not realised that the situation had changed until the committee was told that, in 1974, the frequency was changed to every two months and that, in the 1980s, the frequency became every three months. Apparently, the medicine did not change in any way, and no explanation was given for the change to the frequency of administration. In France, where vitamin B12 can be bought at the same strength from any pharmacy—I do not know whether it is to be taken orally or by injection—the literature that comes with it states that it should be taken monthly. It appears that people in France are getting three times as much treatment as people in the United Kingdom and we do not understand why.
A number of important questions need to be asked and, despite what Malcolm Chisholm said, it is a matter for the Government as well as for medical bodies north and south of the border. Having heard the debate this afternoon, and given the disparities in treatment throughout the UK, does the minister accept that it would be at least useful to learn more about the serious issues surrounding PA and its future diagnosis and treatment from all stakeholders? Will he commit to setting up discussions between his civil servants and those in other parts of the UK to establish some clarity and commonality for patients throughout the country?
I close by adding my thanks and gratitude to Andrea MacArthur for bringing the issue to the Parliament’s attention. While coping with pernicious anaemia, she has dedicated a considerable amount of her time to helping others by achieving the recognition that this serious and important condition deserves.
16:40
Like others, I welcome the debate. I congratulate the Public Petitions Committee and David Stewart on bringing the petition to the chamber for debate, and I join others in congratulating Andrea MacArthur, the principal petitioner.
The problem with following all my esteemed colleagues, including members of the committee, is that they have covered it all. However, I will do my best to fill the four minutes that I have been given.
At the heart of the petition is the call for the Government to review and overhaul the method of diagnosing and treating pernicious anaemia, or vitamin B12 deficiency. I understand that, in the western world, the frequency of pernicious anaemia is estimated at 127 cases per 100,000 of population and that prevalence increases with advancing age. As we heard, diagnosis is usually made using a blood test but, as Nanette Milne outlined, it is only about 30 per cent reliable. The alternative test that has been developed—the active B12 test—is much more accurate, but it does not appear to be routinely used in Scotland, and GPs are not issued with specific guidance in that regard.
The Government’s response to the Public Petitions Committee was that GPs should be able to diagnose and manage any patient with pernicious anaemia as a matter of course and that
“Healthcare professionals are expected to follow agreed local and national guidelines which are complemented by the agreed pathways in NHS Boards”.
Although I welcome much of what the minister said, John Wilson was right to suggest that people’s experience highlights the fact that treatment is inconsistent and that there are delays in diagnosis.
I was struck by Richard Simpson’s comment about the survey by the Pernicious Anaemia Society. If 47 per cent of those who were surveyed said that they waited at least two years for a diagnosis, it surely tells us that there is a problem.
It appears to me that the nub of the problem is that there are no adequate guidelines and that there are major failures in diagnosis, so treatment is delayed. Kenneth Gibson touched on the consequence of the lack of adequate guidance. Of course, the condition worsens, but in addition the neurological problems increase, which affects people in doing their everyday tasks. It would be so much better to prevent that from happening in the first place.
It seems that, on our journey of discovery about the condition, many of us visited the Royal College of General Practitioners website. It mentions management of the condition and asks whether practices maintain a database of patients with a diagnosis. It gives advice on testing, some of which is outdated, as Richard Simpson pointed out. It mentions an annual review including a full blood count and thyroid function and blood glucose tests, and it even mentions a system of identifying when injections are overdue. That information was provided in November 2003. It even mentions data collection and benchmarking, but if that is done, I am not sure whether the Government collects the information or whether any information that is collected supports the contention of this position.
I always listen carefully to Richard Simpson. He called for SIGN guidelines because we know that they drive better diagnosis and treatment. I respectfully ask the minister to review the research and to ask the clinicians to bring forward SIGN guidelines so that we have clarity. That will ensure that patients’ experience of the diagnosis and treatment of pernicious anaemia is improved.
Thank you. I had every confidence that you would use your four minutes.
16:44
This has been a useful debate and I welcome the contributions that members have made.
As I mentioned in my opening speech, we are committed to ensuring that people with pernicious anaemia and vitamin B12 deficiency are detected as quickly as possible to ensure that any risk of complications is minimised. However, the evidence that the Public Petitions Committee gathered suggests that there is still uncertainty about the optimal means of detecting and diagnosing pernicious anaemia. That issue was also raised by Richard Simpson.
As Jackie Baillie said, we expect general practitioners to be able to identify pernicious anaemia. It is not for me to defend what is on the Royal College of General Practitioners website but, as Richard Simpson highlighted, the royal college has noted that B12 deficiency could cause a wide range of symptoms, which can make diagnosis challenging for a GP.
I reassure members that we are committed to ensuring that NHS Scotland provides the latest and most effective diagnostic tools and treatment once their clinical effectiveness has been demonstrated. However, perfect diagnostic tools are not always available in medicine.
Kenny Gibson highlighted some of the progress on new tests that are being developed. Our chief scientist office would be pleased to consider innovative research proposals that are of a sufficiently high standard on investigating further diagnostics and treatments for vitamin B12 deficiency and pernicious anaemia. As for further research, I understand that the Pernicious Anaemia Society is leading research at Cranfield University to identify the ideal dosage and frequency of vitamin B12 therapy.
Once a diagnosis has been confirmed, the care arrangements—which will in many cases involve input from the person’s GP, possibly a specialist and other healthcare professionals—will usually be agreed with input from the patient. We would expect the patient to be at the centre of that process.
The vast majority of people who are diagnosed with pernicious anaemia are getting the treatment that they require, but I understand that some members of the Pernicious Anaemia Society have expressed concern about the frequency of their treatment regimes and report on-going symptoms prior to their next injection. In such circumstances, we would expect patients to be referred to a specialist.
I am sure that all members recognise that clinical decisions about an individual’s treatment are a matter for clinicians to decide, in partnership with their patients. However, I was concerned to hear that some members of the Pernicious Anaemia Society were resorting to B12 treatment outwith the NHS in order to obtain additional injections. I am sure that all members of the Parliament agree that that should not happen. A treatment regime should be determined by the patient in close consultation with their clinician. If patients find themselves in the situation that has been described, clear processes are in place in the NHS to revisit and reconsider matters, and I encourage patients to use those processes.
Several members referred to guidance. I understand that the British committee for standards in haematology will publish a guideline on the diagnosis of B12 and folate deficiency later this summer. That comprehensive document will look at optimal diagnosis, management and frequency of treatment of pernicious anaemia. Comments from the Royal College of General Practitioners in Scotland indicate that it would welcome access to such updated guidance. I am happy to undertake to draw the new guidance to the attention of relevant clinicians in the NHS in Scotland, which will—importantly—include our general practitioners. Following the publication of the guidance, I will be more than happy to ask Healthcare Improvement Scotland to look at further measures whereby it can assist in taking forward programmes to help staff to understand more about the issues that relate to the condition.
We believe that the vast majority of people who are diagnosed with pernicious anaemia receive the care that they require, but we are committed to supporting on-going improvements. Therefore, in addition to highlighting the latest guidance, we will continue to engage with general practitioners on accessing education and information on the symptoms and management of pernicious anaemia.
I invite the Pernicious Anaemia Society to work with NHS inform to help it to ensure that the information on its website for patients with the condition is as up to date and appropriate as possible.
Several members have referred to SIGN guidelines. It is my understanding that SIGN has no plans in its present work programme to consider guidelines in this area. I say respectfully to Jackie Baillie that it is not for ministers to tell SIGN which guidelines it should issue. I have no doubt that Jackie Baillie is aware of that. However, I am more than happy to ensure that the content of this debate is brought to the attention of SIGN so that it can reflect on the views that members across the chamber have expressed.
I am grateful to the Public Petitions Committee for bringing forward the debate, and I hope that I have given some reassurance that the Scottish Government is committed to continue trying to improve services for patients with pernicious anaemia and vitamin B12 deficiency.
I call Sandra White to wind up the debate. You have eight minutes, Ms White.
16:51
Thank you, Presiding Officer. I think that the time has gone from seven minutes to eight minutes, but I have made a couple of additions to my speech, so I hope that I can look forward to taking eight minutes.
It has been an excellent debate. Like the previous debate this afternoon, it illustrates the breadth of issues and experiences with which parliamentary committees are involved. I congratulate the petitioner, Andrea MacArthur, on her tenacity in pursuing the issue and I thank the members of the Public Petitions Committee and the committee staff, as well as members of other committees, for their help and contributions.
Vitamin B12 deficiency has become a serious issue that deserves our attention and action by all agencies. Like Nanette Milne, Dr Richard Simpson spoke on the issue, and I bow to his knowledge of it; his speech was excellent. Vitamin B12 deficiency is closely related to pernicious anaemia and is an illness that has confused many GPs, largely because its signs and symptoms are often linked to a number of other illnesses, such as multiple sclerosis.
I commend John Wilson for raising in his speech the connection between MS and pernicious anaemia, the inconsistency of treatment and the fact that one size does not fit all patients. We need to consider that issue. Some health boards might produce a plan for a patient, but that does not necessarily mean that it will fit or suit all patients.
We must highlight the fact that the testing for vitamin B12 deficiency has not been as accurate or effective as it should be. A number of members made that point in their speeches. As I indicated, the testing frequently results in misdiagnosis. The minister said that the Scottish Government wants diagnoses of pernicious anaemia to be made as quickly as possible. I welcome that view and I will return to the minister’s closing speech later.
As the committee’s report indicated, the rates of vitamin B12 deficiency are far too high throughout Scotland. As the minister and Nanette Milne outlined, a number of groups are particularly at risk of vitamin B12 deficiency, including those over the age of 60, people with an auto-immune condition and those with a family history of pernicious anaemia. Such people may be in need of medical treatment for the condition. In Northern Europe in total, one in 10,000 people is at risk of suffering from vitamin B12 deficiency. Such an incidence is far too high, so we must strive to promote awareness of the illness and work towards a credible solution for dealing with it.
As has been mentioned, a first step was taken in that regard by the debate in the Public Petitions Committee in November 2011, when Andrea MacArthur presented her petition on the issue of vitamin B12 deficiency and its treatment. Mrs MacArthur alerted me and a number of my colleagues to the issues regarding the identification and prevention of the disease. She has been a champion in the fight against vitamin B12 deficiency.
In the committee, we touched on many topics to do with vitamin B12 deficiency. The convener of the committee has already mentioned the lack of attention that is paid to the issue. Mrs MacArthur stated:
“Treatment of the condition is ... consistently bad”.—[Official Report, Public Petitions Committee, 15 November 2011; c 228.]
The convener of the committee also raised that issue. Such a statement brings to light the fact that there really is a problem that demands our immediate, utmost attention.
Members have said that the committee received mixed responses from various health services. The response from NHS Highland—I think that Kenny Gibson mentioned it—was basically entirely different. It agreed that the issue deserved attention and that reform was needed, but Greater Glasgow and Clyde NHS Board did not seem to sense the need to change the testing or medicine for vitamin B12 deficiency. It is rather strange that two NHS boards reached two different conclusions on a very important issue.
I want to touch on something that Kenny Gibson and Nanette Milne mentioned—I think that another member mentioned it, too. The lack of testing and misdiagnosis are important. People can have multiple illnesses, but they can be misdiagnosed. In his closing speech, the minister mentioned people who suffer from vitamin B12 deficiency and pernicious anaemia and have to go outwith their doctor’s surgery and access vitamin B12 injections from another source. That is worrying and telling.
The lack of acknowledgement from national sources prevents information from getting into the public domain and slows the spread of awareness about B12 deficiency. That is one of the key problems. As I mentioned to the committee—John Wilson raised a similar issue—one of my friends suffers from B12 deficiency. I do not think that she was aware of what was happening to her body and to other people. This debate is a fantastic first step in raising the issue of B12 deficiency and pernicious anaemia.
I have much more to say, but perhaps only a minute and a half in which to say it. I will therefore touch on the Schilling test, which Dr Richard Simpson mentioned. He said that the test was mentioned on the website of the Royal College of General Practitioners, but that it should have been taken off because it is no longer used. No accurate test has been used as a replacement. I think that Dr Simpson also mentioned the active B12 test. We could use that, and it is much cheaper. NHS Highland said that that would be a better way of going forward and acknowledging the problem with the current testing process. It accepts that
“the diagnosis of B12 deficiency is not foolproof”,
but that we should use the active B12 test. It said:
“The Active-B12 Test ... is clearly an interesting diagnostic test”.
I want to pick up on some of the issues that the minister raised in his closing speech. I welcome his comments, the fact that the chief scientist office would look forward to having input into more research—the petition proposes that—and his comments on the Pernicious Anaemia Society taking part in that. Patients should be at the centre of treatment—I have mentioned that before—although some patients have worries about that. The minister raised that issue.
I look forward to the updated guidelines. The minister mentioned that he would produce updated guidelines and speak to the Pernicious Anaemia Society. There is also the involvement of Healthcare Improvement Scotland.
The petition urges the undertaking of a review of the current situation. The minister has answered some of the questions. On behalf of the committee, I ask him to consider the petition further, and I look forward to the review of the current situation.