Pernicious Anaemia Society
The phone call I received yesterday started off promisingly. ”I’m just calling to say thank you for your advice about the pins and needles in my hands and feet. I did what you suggested and told my doctor to look in the BNF which he did and I’m now having an injection every other day. And guess what – the pins and needles have gone”.
Now, if the conversation had ended there I wouldn’t be as angry as I am. The caller went on:
“Funny how much of this is around” she said. ”I was at the school gates yesterday and a lady who has a little boy in the same class as me commented on how well I looked. I told her it was probably the B12 injections and that I have Pernicious Anaemia”.
“Oh my grandmother has that – they found out eighteen months ago when she was in hospital – they gave her an injection”.
“How often does she have them I asked”.
“Oh she only had the one. She was discharged the next day. Thing is she is completely bed bound now. When my husband told the doctor about the Pernicious Anaemia and the injection he said that he would run a blood test to see if she needs another injection. She’s 82 years old”.
Now what would you do. I told the caller to tell her school gate friend to insist on more injections. She felt as helpless as me.
As Benefit Reforms in the UK start to take grip I have been asked by four people to become involved in their appeal against the decision to withdraw benefit payments from four of our members. In the past all four members who have contacted me have been awarded Incapacity Benefit as their Pernicious Anaemia have meant that they have been unable to carry on with their jobs – just like me. One of the claimants was physically disabled and whilst this in itself was not a barrier to employment it was the brain fogs, memory loss and total exhaustion that were the real problem to keeping a job that was shared by all claimants.
It’s a tricky situation. The assessment panel that made the decision to stop the benefit payments will have had a doctor as one of the panelists; and the decision will have been made on his or her recommendation or opinion. I realise that I cannot challenge the view of a qualified medical professional but what I can do is to state the truth – that a great many of our 8,000 members are still symptomatic even after replacement therapy treatment of B12 has begun. And that those symptoms will vary in severity from patient to patient which will mean that som patients will be unable to concentrate on their work. This will mean that some patients will need their employer or employee will either have to find alternative work perhaps within the same company, or work in a more flexible environment where time off can be taken on ‘bad days’. In the worst scenario the employee will have to leave the world of work. These are facts that I can be certain of and ones which the appeals panel may not be aware of.
My input comes in the form of a letter to ‘whoever it may concern’. This can then be used by the defence team to try to convince the panel that the patient is genuinely unable to work due to his or her medical condition.
Obviously the major problem is that Pernicious Anaemia has no outward noticeable signs that the patient is suffering. And this is compounded by the established view and understanding of most, though not all physicians, that once replacement therapy injections of B12 have begun then the patient will be able to lead a normal lifestyle. And yes, I can understand why they believe that as the patient’s serum B12 will usually have returned to normal. I remember bringing this problem to the attention of a Haematologist who was genuinely stunned with my observation that many members of the PA Society are still symptomatic after injection have begun. He pondered on it for nearly an hour before asserting that this would probably be due to the patient, having been deprived of B12 for any amount of time, would probably have suffered from scarring to the brain tissue. Unfortunately there is no scientific evidence to back this up. In the letter I also state that doctors are unable to explain why some people are still symptomatic – but that doesn’t mean that they – the patients – don’t suffer and experience the symptoms of the disease once replacement therapy injections of B12 have begun.
Well, of the four letter that I wrote over the past three weeks, two were successful and the members told me that the letter was read out to the panel and the appeal was upheld. Unfortunately the other two members had their appeal turned down.
Last year, two members were facing an employment tribunal because they were under-performing in the workplace. One was a senior police office and the other was an architect. Both were successful in being transferred to another department (the police officer) where a more flexible employment regime was possible and the other was allowed to take early retirement on grounds of ill health with an enhanced pension. So it does help to have the PAS on your side if you are facing employment or social welfare benefit problems.
The next two weeks are going to be busy. As well as meeting my publisher in London on the 18th to discuss my new book, I will be back in London on the following Monday for lunch with Sir Michael Rawlins who was, until last month, the Chairman of NICE since it was set up in 1999.
The next day I am meeting with Clinical Researchers from a university in the south of England at midday and then, at 3:30 I am meeting with Prof. Jo Martin, the newly appointed National Clinical Director of Pathology to discuss our recent findings.
Well done to Carrie-Anne for arranging and brokering these last two meetings. I’m sure we will be able to raise awareness of our problems in getting diagnosed and treated properly.
The results of our research findings have now been analysed and written. The findings, which, incidentally, simply provide statistical back up for the numerous stories on the website’s forum, are now being sent to various medical magazines and journals. Different journals have different criteria for publishing but hopefully it won’t be long until the results of the survey are known among the medical fraternity.
The purpose of the survey was to provide numerical data that gives some scientific basis to what members of the society know already – that there are serious problems with the way in which we are diagnosed and treated.
Hopefully I will soon be able to report that the paper will be published. Fingers Crossed!
47500 – PAS Logo Refinement 5So – it actually happened on time – the new website has been launched along with our new logo.
I have explained in a previous posting how the website was designed – basically it is now based on what people searching for us want to know. There is a lot of free information that will allow people who have been newly diagnosed to find out about the disease. And the content is also based on what people want to know.
It hasn’t gone without a glitch – and there are still things to be ironed out but I am confident that by the end of the day the new website will be doing what it is supposed to do – provide information and support to sufferers of Pernicious Anaemia and their family and friends.
It was around 10 o’clock yesterday that I had a telephone call from a male aged 41. “I have Sub-Acute Combined Degeneration of the Cord Secondary to Pernicious Anaemia” he said. “The problem is that around a month after having my B12 injections I start going downhill again”.
All I could do was sigh. I knew what would be next. He’d be asking if I can recommend a doctor who specialises in PA. He didn’t.
“But it gets worse” he continued. “In the weeks leading up to my injection I just come home from work and want to sit in a corner and do nothing. I’m like a zombie. I get irritable, I am quarrelling with my partner, I am forgetting things – important things in work. And worst of all I start hallucinating – seeing all kinds of terrible things in the garden and behind the television. They are so realistic that I am genuinely terrified. I have had to go part-time as I couldn’t manage to do my job full-time anymore”.
I asked how often he was getting his injection and he told me that it was every twelve weeks before adding “to the day”. I told him that he should receive an injection every other day until there was no improvement in his physical condition – he has numb hands and feet and keeps falling over. Armed with that information he was going to go back to his doctor to see if he could get the injections every other day. Before the call ended I asked him what he did for a living.
“I’m a senior Psychiatric Nurse” he replied. “And I get hallucinations worse than my patients”.
She wanted to ensure that we, as a society, were actively engaged in research into Pernicious Anaemia and I was able to tell her that yes, we were.
“I have Pernicious Anaemia” she told me. “I’ve had it for thirty years and I still get very tired in the run-up to my injection”. I asked her what other illnesses she had; the list was long but included “bowel cancer, bladder cancer, tinnitus, diabetes, rheumatoid arthritis, psoriasis, going blind, going deaf, Parkinson’s and several others that I forgot.
“I’m phoning around all of the societies to find out if they conduct research so that I can make a small donation to each one” she said before adding “doctors seem to have forgotten about Pernicious Anaemia”
She then asked if she could have an information leaflet that I gladly sent her.
I had another one of those telephone calls yesterday. A 34 year old lady called to say that both her and her mother were diagnosed as having Pernicious Anaemia fifteen years ago. Both were put on to three monthly injections. For some reason her mother’s injections were stopped three years ago. Her doctor told her that new research had proved that some patients “cure themselves” and as her b12 levels were good she must have cured herself – miraculously cured herself.
“My mother is dying before our eyes” the caller told me. ”She can’t walk straight and has terrible pins and needles and numbness in her legs. It’s awful to see her”.
And so I have written a letter to her doctor asking for more details of the research relating to self-healing. I also pointed out that I would be writing to higher authorities if her injections are not resumed.
I shouldn’t be having to do this…….
The next few weeks are going to be a busy time for the society and for me. We have been able to convince the Big Lottery that we need a new website that will be responsive to our members needs. The new website is now being developed and will take a month to complete. However, before the new website starts to be built a lot of work has already gone into ensuring that the website content reflects the needs of our members.
Here’s how the whole process took place.
Firstly we had to write a bid for the grant. This involved producing evidence that there was a need for a new website. The Big Lottery insisted that we prove that the current website needed updating. This involved analysing statistics relating to the number of people visiting the site (a daily average of 575) and the amount of time people stay on the site (average time spent on the site 2 minutes 41 seconds) and how many pages are visited (3.12). Then we could provide details of new
versus returning visitors and other statistical data. Then we had to convince the lottery funders that our members, and the medical professionals would benefit from a more modern and up to date website. The current website was designed and built (for free) by a software engineer and not a web designer. But it has served its purpose for six years but is now groaning under the demands made of it and needs more modern features.
A New Brand
We were successful in our bid for a grant and now the detailed work
begins. It was suggested by one of our volunteers that we take this opportunity to not only develop a new website but also to re-brand the society. But why? Well first of all I had to be convinced that we needed to re-brand our image. And to do this the we had to conduct a poll of members asking what they thought of our current logo and branding. I say “we” though I had nothing to do with this. The results of the poll were given to me and it showed that whilst around 40% of our members thought the current logo and branding was a good reflection of our values, around 60% thought we would benefit from a new brand image. Something more “modern” that would reflect the new values and aims of the society. The original brand image and logo were developed free of charge by the partner of one of the original Trustees and at the time was aimed at the society simply providing “advice and support”. That’s what we originally set out to do. It was only after a few years that we, as a society, realised that there were serious problems and issues with the way in which B12 Deficiency in general, and Pernicious Anaemia in particular was being diagnosed. And secondary to that we became aware that there were serious problems with the way B12 Deficiency in general and Pernicious Anaemia in particular was being treated. We soon realised that we had a lot of work to do to raise awareness of these issues and convince medical professionals that these issues were having a serious impact on the everyday lives of our members. So, the original remit of the society had changed and now, in 2013, the fight goes on. And we need a new logo to reflect this change.
Re-Branding and the New Logo
“My uncle asked me what I wanted for my birthday” said Jo quite casually one morning. Jo is a volunteer who has been with us for around six months. I asked what she had asked for. “A new logo for the society” she replied adding, “He’s a Graphic Designer”. And so it was that we started on the quest for a new logo. We had already established that most, though not all of members who had taken part in the poll believed that a new logo would better represent our aims and objectives and now we had, as a birthday present, the offer from a Graphic Designer to design a new logo. But what would the new logo seek to convey. And this is where we begin to use members as Focus Groups. Starting with a brainstorming session at the office, we came up with a list of adjectives that would best describe our work and how we would like to be regarded. Reliable, Trustworthy, Knowledgeable, Honest and Serious were among the most common words that reflected the work of the society. These words would form the basis of the new brand and logo and they were given to the graphic designer. We waited. Seven days later the draft designs arrived. And now began the process of selecting which of the new logos would become our new brand ambassador. Again, it wasn’t a case of choosing “the nicest” but rather gathering a group of people together and asking them to identify which of the new logos best represented the list of key words that reflected the work and image of the society. First of all two groups of members and volunteers were shown flash cards of the new logos. The group members were then asked to make their choice. This first choice would be mainly based on first impressions where colour and graphic impact would be most likely to influence choice rather than a more in-depth consideration of the key words. Once the group members had made their choice each logo was then discussed in depth with colours, shape and overall design were matched against the key words. The group members were then asked to once again make their choice. Then, they were asked what their first choice was. There was no clear winner with individuals choosing different logos. This changed when asked for their second choice. This time there was a clear winner when, with the exception of one group member in one of the groups all members chose what would become the new logo. We had a clear winner. And no – you’re not going to see it yet!
The New Website
We now had to decide on the content of the new website and it became obvious that we needed help. There’s a new breed of entrepreneur out there who earn their living by helping businesses to optimise their ranking on internet search engines. The idea is that people searching for a particular product or service will be directed to a particular website if the website has been optimised to enable it to rank high up in the list of search engine results. Or that’s what I thought happened. The truth is much more complicated. Anyway, Jo knew one of these new business consultants and he agreed to help us not only optimise our website but also report on what questions or search terms visitors to our website had used before they were directed to our site. The results were quite astonishing. An average of around 5,000 people type in “b12 deficiency” into google every day. Another 5,000 type in “symptoms of B12″ and another 5,000 enter “Pernicious Anaemia Treatment”. The list of search terms being used to direct people to our website was long, and it took some analysing. The result of this extensive list of data is that it provided us with a list of questions being used by people to find answers on search engines. And as these people end up at our website this list of questions were the questions that we would have to ensure that our new website provided the answers to. These were to be the foundations upon which would be built the platform for any information and answers that we would ensure our site provided.
The New Design
The whole design and layout process begins with the new designer providing ‘mood boards’. Mood boards are used in design work to give a general aura of the new design – and this applies to website as much as to anything else. We were provided with examples of existing websites that might reflect the ambiance of what we would like to create. It would be up to Jo and I to choose the general style of the existing websites that we would with our new site to look like. We were given around half a dozen suggestions. We rejected all of them in a very short time. All of the sites were commercial enterprises and we felt they didn’t reflect on the key words that we had provided the designer with. Instead we suggested four UK sites from the third sector that we would like our site to look like. We had to tell the designer that we were not “selling” anything. We were providing information, help and support in an honest, reliable, serious, knowledgeable and trustworthy way. We wanted our website to be completely different from a commercial site. And that’s where we are at the minute.
The next stage is the full development of the website. We retain control over content and so everything that goes into the new website, every bit of information, every down-loadable leaflet and poster will have to be re-written. The Designer will design the site (a bit like an architect designs a house) and the software engineers will bring it to life by using complex codes (think of them as the surveyors who actually build the house). There is now a strict timeline that has to be adhered to if the website is to go live on its appointed date and time which is at 10am, Tuesday 26th March. There is much to do!
Policy Statement on Cyanocobalamin TabletsWe have a volunteer who has been told that she has been suffering from Chronic Fatigue Syndrome for the past ten years. So bad is her fatigue that she hasn’t been to school since she was thirteen. Se wakes at 7am and is back in bed by 1pm before rising again at 7pm and retiring at 11pm.
The first time I saw her I thought she had B12 Deficiency. I asked to see her tongue which was swollen.
After pestering her for a few months she finally agreed to ask her doctor to check her B12 levels. “I’ve had so many tests over the past ten years they will almost certainly have checked my B12″ she said, but finally went to her GP and asked for the B12 Test to be carried out.
Guess what? Level comes back at 120mcg/ml. So, injections were started? No! Doctor will only allow her injections if the Anti-Intrinsic Factor Antibody Test proves positive. We await the result of that next to useless test……