Martyn Hooper

Yesterday was a quite traumatic day. We usually receive two, maybe three calls per day from distraught members who telephone the office seeking reassurance that they are not going mad and that it is normal to want more frequent injections.

One lady who joined last week has telephoned the office several times. She has had a full life and is the mother of four children and nine grandchildren. During the last world war she worked as a nurse in the army, had returned to civilian life and carried on her career as a nurse for thirty years. Daisy, ( I have changed her name) joined the society after reading Andrea’s story as told in the Daily Mail in August. She too had been prescribed the same antacid treatment that Andrea had been prescribed and, like Andrea, she was experiencing the classic symptoms of Pernicious Anaemia. After reading the newspaper article she made an appointment to visit her doctor and explained that she had read the article and she too was experiencing the very same symptoms as described by Andrea. Indeed, she had been suffering them for many years – suffering in silence. Her doctor had agreed to test for B12 Deficiency but, when she returned to her G.P. a week later to get the results “she told me that I was borderline and she couldn’t possibly prescribe me any B12 injections”. Daisy was distraught. She was calling the office asking what she could do. We told her about the Methylcobalamin Infusionns – “but I don’t have that sort of money and anyway, I don’t think I could travel that far. I am just too tired”. We told her about asking to see a Haematologist ” but the doctor says there’s no need – my blood is just about normal”. We suggested asking her children to take her side and play the role of advocate – “but they think the doctor is right and that I’m just imagining things”.

We couldn’t think what we could do apart from sympathising.

Daisy telephoned yesterday and it was immediately apparent that things had got worse. Kirsty took the call and soon passed the call to me. Daisy was crying, telling me her story and her symptoms between great big sobs of frustration. She had had to take her cat the the Vet. While the Vet was examining the cat Daisy told him her story. The Vet couldn’t believe what she was going through and told her they regularly administer B12 to cattle and other livestock. He told her it was obvious she was B12 Deficient and was so concerned that he called one of his colleagues to witness what Daisy was experiencing. All of this attention only added to Daisy’s frustration.

Meanwhile her doctor had prescribed her antidepressants that she didn’t feel she needed. She was sleeping thirteen hours at a time and still couldn’t function in the afternoons (all of our telephone calls from members take place in the mornings) and didn’t know what to do. It was plain that the lady was at her wits end. I knew I had to do something.

The best thing about being an Executive Chairman rather than just being a Chairman is that I have had full executive powers conferred on me by the Trustees of the society. That means I can make decisions without having to have them aproved by the Trustees. I decided to act positively and dip into the society’s meagre financial resources.

“We need Doctor R to see you. The society will pay.”

There were sobs down the ‘phone. “Oh thank you. Oh thank you”.

“And I think that right away you need to speak to Jane our Nurse Counsellor. Would you like Jane to call you so that you can discuss all of this with her?”

“Oh yes, oh yes” she sobbed.

I telephoned Jane who I had only asked the day before if she would take on the role of manning and dealing with the telephone helpline. She was in the office within two hours. Jane has over twenty years of nursing experience and is currently working as a community nurse (or district nurse as they used to be called). I briefed Jane and handed her the telephone. Forty five minutes later she ended the call. She had made all the right noises and said all the right things. There had been much tutting and sighing and she was obviously genuinely sympathetic to Daisy’s predicament. She turned to me with a serious face.
“She told me that if it wasn’t for your offer of help this morning she would have killed herself. You have saved her life” she said.

Things are really starting to get busy with the Awareness Week.

As well as arranging meetings with various politicians and civil servants, today sees the begining of our media campaign to raise awareness among journalists from all types of media of the problems that we, as patients, face.

The media campaign has not been thoroughly planned because we simply do not have the financial resources or the people resources to launch a fully integrated comapaign.  Instead we are relying on one member of the society who has experience in presenting both television and radio programmes to  use her contacts to promote our cause.  Fatima, for it is she, will be using daily press releases to entice journalists to air our grievances and the first of those press releases can be found here.  I will endeavour to place copies of the press releases here as they are written.

If any of you can help us to promote our cause by agreeing to speak to journalists please contact me in order that I can take your details.

DATE: 25/09/09       Time:  10.am                          EMBARGOED UNTIL: For Immediate Release

Call for Review into the Treatment of Pernicious Anaemia

The Pernicious Anaemia Society, a registered charity, has called for an urgent review of the treatment of Pernicious Anaemia.

“The most common complaint made by our members is that they are not given an adequate treatment regime based on the individual patient’s needs” says Martyn Hooper, the founder and Chair of the society.”

The treatment of the condition is usually a replacement therapy injection of vitamin B₁₂ every three months.  “This is not enough for the vast majority of our members”, says Mr. Hooper.  “And when doctors refuse to prescribe a more frequent treatment regime our members are forced either to suffer needlessly or buy the injection over the counter in mainland Europe and then self-inject without any medical training and without the knowledge or support of their G.P.” he says.

Another option for members who seek more frequent injections is to turn to the private sector where a purer form of the vitamin is available that is injected just below the skin.  “Members who have turned to the private sector are able to self-inject twice a day and not have to wait three months for an injection” says Mr. Hooper.

If left untreated, severe and permanent damage to peripheral nerves and to the central nervous system can result.  Lack of adequate treatment, based on the needs of the individual, means the patient often struggles to lead a normal life and as a result problems arise with work and family life.  Changing the way in which the condition is treated by allowing the patient to self inject rather than take up the time of a nurse who currently administers the treatment, would save the NHS  over £20 million per year the charity claims.

This is Gandalf
Isn’t he a charmer. Look into those eyes. One of God’s most beautiful creatures. Loving, friendly, affectionate. Look at the cute little bell around his neck. Notice how well he looks and how he is obviously well looked after.
Look at those cute little paws. The paws that can turn into murderous pin sharp razors at the flick of a tail. Note the rip in my favourite chair that was caused by little old Gandalf when he was dreaming one day.
Gandalf is no more my cat: He never was.
The story begins in late May of this year. This pitiful white feline turned up in the garden absolutely soaked through. It was raining steadily (and still is) and I made the serious error of making eye contact with him and, as I opened the conservatory door, he ran up the steps and made straight in. He immediately started to make himself at home, stretching out on the carpet and pulling himself along using his claws – the cutlasses could also be adapted to grappling hooks. He was wet through and obviously very hungry.
I am not a cat person. I don’t dislike them but neither am I particularly fond of them. They have their world and I have mine. And as long as they keep to their world the can be assured that I will not interfere with that world. This was how it always was but no longer is. The cat decided to make himself at home. I went to buy some cat food. When I returned it finished off a whole tin of cat food as if it had never eaten before. It then curled up on my favourite chair and settled down to sleep for the rest of the evening and night. In the morning it ate another tin of food and then decided to leave.
When I returned hom in the early afternoon he was sitting on the wall near my front door. It was genuinely glad to see me. I wasn’t particularly glad to see him. I say him because I now know it is a tom but at the time I didn’t know what its gender was. I had a suspicion that it was a female because of the pink collar around its neck. I called it simply “Cat”. Cat ate another tin of food and then settled down to sleep. Outside it was raining hard and I couldn’t simply throw this defenceless animal to the mercy of the weather. It slept and ate for the next week. I came home one day and found it cowering from the rain underneath the bushes in the garden. It had no shelter other than my house. I began to make enquiries as to what one does with a cat that is obviously homeless. “Take a picture and print off some ‘cat found’ posters suggested one friend.
“Excellent idea” I thought and immediately set about discovering how useless it is to try and reason with a cat to co-operate in a photo shoot. They don’t obey! They are pointless! You’d swear this was his house and he was doing me a favour by allowing me in its presence. Eventually I got a picture and printed off some ‘cat found’ posters, laminated them and started to distribute them in local shops, tied them to lamposts and even got one displayed in the local police station. The posters had the picture of the cat, an appeal for its rightful owner to get in touch and my telphone number. I waited for the call.
It came during the evening of the second day that the posters had been distributed. It was from a lady whose friend had telephoned her to inform her that there were pictures of Gandalf (for that was his name) posted everywhere with an appeal to the cat’s owner to telphone my number.
“Do you live locally?” I asked.
“Just around the corner from you” she replied.
“Have you been wondering where he or she has been?” I asked
“It’s a he and I’ve been wondering why he has not been eating his dried cat food” she responded.
“You mean he’s not lost?”
“No – he keeps on doing this to people. He just invited himself in and takes advantage. You are now the fourth house that he visits regularly. Please stop feeding him and just ignore him”.
“I will” I assured her as I caught sight of the cat preening himself on my chair. “But tell me, why has he got a pink collar on if he is a boy?”
“Because of the bell. We needed a big bell to warn birds and other stuff that he is around. The biggest bell we could find was pink. Has he brought you any presents yet?”
“Presents?”
“Yes, dead mice or birds” she explained.
“No” I replied.
“That’s his next move” she explained. “If you refuse him entry he will start bringing you little gifts”. I shuddered.

The cat stared at me as I made my way towards him. “Well Gandalf” I said, “The game is up. Off you go” I opened the back door and put the cat out. It was the first time I had picked him up. He looked at me as if to say ‘what the hell do you think you are doing?’ It went away. This was the third week of June. It was the start of a battle of wills. He has sat on my garage roof in torrential rain. He has greeted me almost every time I got home, he has cut a pathetic sight by scratching at the conservatory door. He has mewed incessantly in my garden but all to no avail.
This week he has tried the bribary. Two dead birds, three disbowelled mice and one vole have all been deposited outside my garden studio door. As I write this he is looking at me – no, staring at me, through the vertical blinds of the sliding doors.
He will not come in!

For all those outside the U.K., BUPA is a private healthcare company that offers an alternative to the free National Health Service. It has an enviable reputation built on many years of offering people an alternative to the NHS but it means that the patient will have to pay for the services offered by the organisation. They provide payment plans and insurance that many individuals subscribe to in order to have an alternative treatment regime. Many companies also offer BUPA Health Insurance to their employees as an incentive that helps them recruit the very best staff.

BUPA stands for British United Provident Association and it started offering an alternative to NHS treatment in the 1940s. It now operates in 195 countries, has over 10 million members (as well as 23.2 million patients served by Health Dialog) and owns AXA Australia Healthcare. It is a major provider of private health care – the biggest in Europe.

One of the services that it offers, not only to its members, but also to members of the public is Health Assesments. These Health Assesments are a sort of in depth medical examination – an annual diagnostic service if you like. The idea is that, using state of the art screening techniques, the patient can benefit from early diagnosis of a whole range of diseases or other medical problems. There are five different Health Assessment packages available. Starting from £339 you can undergo a BUPA Essential Health Assessment that takes an hour, 30 minutes of which is spent with a doctor. The Essential Health Assessment consists of 31 tests including a Physical Examination and Consultation, Breast Check, Blood Pressure, Lung function and Biochemistry profile. It also includes a Full Blood Count that includes a test for anaemia.
The product range also includes a BUPA Female Health Assessment at £299 that concentrates on early detection of gynaeacological conditions and breast cancer. For £499 (or £578 with mammograph) the company offers the BUPA Complete Health Assessmenta chest x-ray, thyroid function test and a vision test. But the daddy of all of the assessments offered is the BUPA Advanced Health Assessment that takes up to two and a half hours with one of the hours spent with the doctor. It costs £649 or £728 with a mammograph (for those over 40). Up to 43 separate tests being conducted including heart efficiency during exercise, a detailed lung function test and a fitness score.
All of the assessments offer a full blood count which, you might think, would include a vitamin B12 blood test.
It doesn’t. The only assessment plan that offers a Vitamin B12 test is the BUPA Mature Health Assessment that has been “especially created for those over the age of 65″.
Unfortunately we are back to the old-fashioned belief by the medical fraternity that vitamin B12 deficiency is an old people’s problem despite the fact that the most common age for the members of the society to receive a diagnosis is between 35 and 45. It seems ludicrous that, if a full blood count is taken in all of the assessment plans, the B12 test is only carried out on those on the Mature Health Plan. Why do they not routinely test for B12 deficiency as well? It would cost only a few pennies more.
I have written to the Dr. in charge of BUPA Wellness to point out that routinely checking for Vitamin B12 deficiency as part of the FBC would be a worthwhile exercise.
He would be well advised to read BUPA’s information leaflet on Pernicious Anaemia. I can send him a copy if he wants. After all, I did write it.

First of all a big thank you for all the birthday wishes. I don’t usually celebrate birthdays and even though this is a milestone occasion (I was born in 1959) I still won’t be having any over the top celebrations.
I have had, however, the best birthday present ever……. after years of hinting Mrs. H has just presented me with my very first, and the very best Train Set. Hornby OO guage Flying Scotsman. Excellent. Now I have to make a board that will somehow fit on the wall of the Music Studio. This is going to be the start of something big!
Just because it is my birthday doesn’t mean there will be any lapse in the work I do for the Society. I’m off to London at 10 to attend a meeting of the Prescription Charges Alliance that has been campaigning (hopefully we will hear today whether it has been succesful) to abolish prescription charges for those with long term conditions. It’s ridiculous that those members in England that don’t use the services of the nurse at their surgery and either self inject or get somebody to inject for them have to pay for their B12 injections. This applies only in England as Wales has abolished prescription charges accross the board and Scotland and Northern Ireland are following suit. It remains to be seen whether the alliance has been succesful but the indicators are that they have been.
Thankfully my now weekly commute to the Capital will be with Kirsty – so at least I will have some company. Thanks for all the messages of congratulations on me reaching my half century.
Two trains in one day!