CHAIRMAN’S REPORT ON 2018
As we begin a New Year which will bring with it a whole new set of challenges I would like to take this opportunity of providing you with a report of the most significant events of the last twelve months.
To say it has been a busy year is an understatement. We have we taken 960 telephone calls to the Members’ Helpline, our network of local Support Groups continues to grow and this year we held three National Events in Northern Ireland, Scotland and England.
We have seen papers published that demonstrates that there is a Stigma attached to Pernicious Anaemia by medical professionals (some, not all), we’ve recruited members to take part in research being conducted by two Master Degree students and another project looking at self-treating. A PhD was awarded to a Health Psychologist for her work on the Diagnosis and Treatment of Pernicious Anaemia and we have also continued our campaign to get the way in which Pernicious Anaemia is diagnosed and treated thoroughly reviewed; and this year, I’m pleased to report, there has been some significant progress to this end.
The most important development at the start of the year was me being invited to London to take part in a National Institute for Health and Care Excellence (NICE) review of the way in which Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is diagnosed and treated. NICE is reviewing its Guidance on ME/CFS and, because the society is registered as a Stakeholder with NICE I registered an interest in this revision process and was duly asked to attend a workshop in the capital. I had registered an interest because I know that many of our members, on the journey to getting an accurate diagnosis of Pernicious Anaemia, are often suspected of having, or have been diagnosed as having CFS/ME. And anyway, attending the workshop would give me a valuable insight into how NICE goes about developing or revising any Guideline they produce. There were around forty Stakeholders at the workshop who sat in several groups and began to discuss the shortcomings of the current Guideline. I pointed out that the current information tells doctors to not investigate the patient’s B12 status ‘unless there is evidence of Macrocytosis’.
Macrocytosis is used to describe enlarged red blood cells which are an indicator of B12 Deficiency. I pointed out that only around 50% of patients with low B12 will have any enlarged red blood cells and so anyone presenting with the symptoms of CFS/ME should have their B12 assessed because the symptoms of the disease are very similar to those symptoms of B12 Deficiency which is likely caused by Pernicious Anaemia. More discussions followed and, at the end, the then Director of Guidelines told me that my information was very useful and that they would be removing the advice to only check the patient’s B12 if he or she had enlarged red blood cells.
And this will mean that patients who tell their doctor of their continual tiredness and fatigue will now have their B12 checked regardless of whether they had any macrocytosis – which should lead to more people being identified as having low B12. We know that the test for B12 that is currently in use is far from accurate which, as I pointed out at the workshop, was something that NICE needs to address.
The last day of the month saw me finally presenting NICE with our request for a Guideline to be produced into the diagnosis and maintenance of Pernicious Anaemia complete with a comprehensive costing report that shows the costs in wasted GP consultations in England alone in the lead-up to a correct diagnosis was at least £8 million per year. The true figure is probably eight or nine times that.
I appeared at the preliminary hearing of an Employment Tribunal for one of our members who has been forced into early retirement due to his ongoing symptoms. I attended the hearing and told the panel that, contrary to what most medical professionals believe, the symptoms of Pernicious Anaemia do not simply disappear once treatment with B12 injections begin. He was granted early retirement but then he needed to access his pension and so I attended another hearing a few weeks later where again I gave the panel my views. I’m pleased to say that he was successful in accessing his pension. The GP on the panel asked for my contact details at the end of the tribunal which I took to be a good sign though I haven’t heard from his since.
At the start of Spring I attended two meetings held in London. The first was my initial meeting with the Neurological Alliance which the PA Society is a member. As always, I used the meeting to raise awareness that left undiagnosed and untreated Pernicious Anaemia leads to serious irreversible nerve damage. I made several new contacts at the meeting and I hope that my new network will provide me with the opportunity to further raise awareness amongst medical professionals associated with neurological issues of the need to check for any B12 Deficiency – bearing in mind the limitation of the current test.
The second meeting was with the Prescription Charges Alliance. This is an amalgamation of charities representing those with long-term conditions whose members will need treatment for life. Whilst prescriptions are free for those members with Pernicious Anaemia in Wales, Scotland and Northern Ireland, patients in England have to pay for their life-saving medication. The Prescription Charges Alliance is campaigning to get free prescriptions available in England. At the meeting I raised the issue of some patients who have Pernicious Anaemia being given a prescription by their doctor for the ampoule of B12. They then have to pay to get the prescription dispensed and then return to the health centre to have the vitamin injected by a nurse. Over the past year we have heard of several cases where patients are being given a prescription and, as budgets are tightened, there is every reason to believe that there will be an increase in this bad practice.
At a meeting of the Trustees in Birmingham it became clear that we were way behind in complying with the new General Data Protection Regulations (GDPR). Whilst we had an adopted and updated Data Protection Policy that we believed would have been sufficient to meet the requirements of the GDPR it had become clear that we would need completely new GDPR documentation. Producing that documentation took up a great deal of time and effort during the latter part of April and most of May. With hard work and determination, we made the necessary changes and produced a policy that is now fully compliant with the new requirements. This means that we have in place a firm set of policies and procedures to ensure that the data that we have on members is 100% secure.
It was towards the end of May that I was asked to organise a meeting of those involved in the Abnormal Gut Bacteria project. We had been collecting faecal and urine samples from three groups of people – those who manage perfectly well on one injection of B12 every three months, those who need more frequent injections and a control group who do not have Pernicious Anaemia and who do not need injections. The meeting was to be convened urgently as the molecular make-up of the three groups had been analysed and the results were in. Guess what, there was a strange type of B12 in those who needed more frequent injections.
This was completely unexpected and was later verified when the bacterial analysis of the three groups were examined. This has now led to a second phase of the project and we will again be recruiting participants for the next stage in the new year. There is, as yet, no really robust explanation for the findings but those involved are still trying to agree on a theory which is why we need more data. This really was quite an important breakthrough in providing the science to explain why some patients need much more frequent treatment than others.
I was invited to become part of a panel that looks at research proposals from research teams across many different health related fields. The panel looks at funding applications from a number of teams and evaluates them as to whether the research would benefit patients. It stands to reason then that patients should be part of the evaluation process. I was one of three ‘lay members’ of the panel and I was expected to give a lay person’s opinion as to the quality of the research proposal. Each proposal was discussed and voted on to ensure fairness. It was a valuable insight into how patients can and do have a say in future research projects, an insight that may benefit the society in the future. It was also in this month that I was contacted by the Committee for Toxicity in Food (part of the Food Standards Agency that acts as adviser to Her Majesty’s Government). The asked me if I could explain the problems with diagnosing B12 Deficiency because the Government was considering raising the level of Folic Acid Fortification in Flour and making any fortification compulsory. I produced a report and I was then asked to present my findings at the next meeting of the committee.
I attended the meeting of the Committee for Toxicity in Food and explained that, if they went ahead with fortifying flour with folic acid then, yes, it would lead to a decrease in the number of babies born in the UK with Neural Tube Defects but, and it’s a big but, it would also mean that identifying people with B12 Deficiency would become even more difficult because the folic acid would mask any deficiency. And I pointed out that the serious limitations of the current Serum B12 Test and that B12 Deficiency can also lead to neural tube defects. The outcome was that the committee deferred any mandatory fortification until a better B12 test is available. I outlined the position of the society relating to mandatory fortification of flour with folic acid which is that we are not against the policy as it has led to a decline in the number of babies with neural tube defects in countries that have introduced mandatory fortification, but we want to make decision makers aware of the impact the policy would have on diagnosing B12 Deficiency.
We were informed we would have to vacate the offices while a new roof was being fabricated. This involved moving all essential equipment out of the office and into my garage from where I am writing this!
I received an invitation to be the opening speaker at a Study Day to be held in Manchester on April 3rd for over 700 GPs. The Day would be spent looking at the problems with the way in which Pernicious Anaemia is diagnosed. I was, of course, happy to accept. Finally, the urine samples from patients who took part in the Abnormal Gut Bacteria were delivered to the laboratory in Milton Keynes to be analysed. This was the last part of the project jigsaw.
So, off to north Wales for a preliminary meeting regarding research into the treatment, or, more correctly, the correct treatment of patients with Pernicious Anaemia. This involved a face to face meeting with a Professor of General Practice who is aware of the work of the society and is sympathetic, or at least aware, of the need for patients to receive treatment according to his or her needs. The meeting took an unexpected turn when it was pointed out that a self-treatment trial wouldn’t get passed the medical ethics committee as there was no firm foundation upon which the pilot could base itself. What would be needed would be the evidence that some patients are suffering from under-treatment. A plan was hatched and I’m pleased to say that at a further meeting in November, the results of interviews with non-members of the PA Society were produced and were very positive. The necessary ethical approval is now being sought and a research team is being put together. It’s interesting to note that the team will comprise of a wide range of medical professionals including Psychologists, Bio-Chemists and Health Economists. This is a very significant development.
We sponsored a MSc Student at the University of Kent who will be doing further work on the molecular differences in the stool samples provided for the Gut Flora project.
This was the month that brought the best news of the year. The first piece of good news was from NICE stating that we had convinced NHS England of the need for a Guideline and they had referred the matter to NICE. Our, or rather NHS England had made our case for a Guideline to be produced and it would now be placed on their list of subjects to be reviewed. That was the result of three years’ work in gathering evidence. However, the fight now begins to ensure that the Guideline is produced and that our request, although accepted, is taken the next step forward and is scheduled onto the work programme.
The second piece of good news was from the British National Formulary (BNF) that told us that, after looking at the evidence presented in our report that we submitted in June 2017, they had revised their entry about how to treat Pernicious Anaemia from ‘one injection every three months’ to ‘one injection every two-three months’. I can’t help pondering on how many people’s lives have been improved by this simple adjustment, but, there again, how many doctors will make the change? We do our best!
To Brighton to appear as an ‘expert witness’ in a PIP appeal for one of our members – we won, again! We have a 100% track record in reversing original decisions in these cases.
To London for a meeting with the research team of the Abnormal Gut Flora project. The second phase was agreed on and funding secured. The second phase will build on the findings of the preliminary stage.
There’s no time to relax our efforts. The next twelve months will centre around:
- Recruiting more participants for the Gut Flora Project
- Devising and Implementing a Political Campaign to ensure that NICE prioritise our application for a Guideline to be developed – the short-list will be compiled in August and I want to ensure that we are ‘front of mind’ for the decision-makers.
- Commission a new Database of our membership so that we can provide more evidence about the Demographics and Geodemographics of our membership.
So, this year we have made small but highly significant progress to getting the way this disease is diagnosed and treated thoroughly reviewed. Only then will patients’ lives be made better.
Thank you for all your support and good wishes. I would like to take this opportunity to wish you and your families a very Happy New Year.