‘They are really letting people down’
Treatment injections put on pause
WHEN Sally Norris started feeling exhausted and forgetful she originally thought it was because she had recently turned 60.
As the symptoms worsened married mum-of-two became convinced she had dementia and eventually consulted her doctor.
But Sally didn’t have dementia, she had pernicious anaemia - and she believes Gloucestershire is one of the worst places in the country to be diagnosed with the auto immune disease, which is common in middle-aged and older people.
She and fellow sufferers in the county say NHS chiefs are trying to save money by recommending patients take overthe-counter vitamin supplements, rather than have the injections recommended by NICE (The National Institute for Health and Care Excellence).
Doctors are being urged to tell patients to go shops like Holland & Barrett, because it will be cheaper than a prescription.
One woman, who we have agreed to not name, was forced to give up a highpowered job after being diagnosed. She says the new regime means she has just been denied the injections she has been having regularly for more than a decade.
“Twelve years ago I was told that I had a condition that would make me really ill and then kill me unless I had B12 injections for life,” she said.
“Now they have stopped my injections and told me to take supplements from health food shops, pharmacies and online, even though there is no scientific evidence that they work.”
Pernicious anaemia is an autoimmune disease that stops sufferers absorbing vitamin B found in meat, fish, eggs and dairy products because their stomach does not make a substance called intrinsic factor.
This leads to fatigue, progressive nerve damage and psychiatric disorders. Symptoms include breathlessness, feeling generally weak, loss of appetite, constipation and abdominal pain, depression, irritability, pins and needles or numbness in the hands or feet and Glossitis, a sore beefy red tongue.
NICE say people with B12 deficiency that is not diet related should have injections every two to three months for life. But many sufferers in the county claim an algorithm introduced by the primary care clinical commissioning group recommends pernicious anaemia is initially treated with injections and then managed with oral supplements.
Sally Norris, 66, is one of possibly hundreds of people across the county already injecting themselves with vita- min B12 bought over the internet, because they say even the two and three monthly injections recommended by NICE are not enough. The Berkeley-based horse-loving mum said she felt like she was dragging a dead weight behind her every day and kept falling over. Numbness meant she had to drive one-handed so she could rub her hand on her leg to get enough sensation to steer. She always carried a pen and paper to write down the details of every conversation.
“I put it down to my age.,” she said. “Well I’d never been 60 before so I just thought ‘so this is what 60 feels like.’ This is what getting old feels like.’ “I didn’t rush to the doctor until the memory thing happened. I was working as speech and language therapist and suddenly realised that I had absolutely no memory of what I had just talked about. Not a thing. It was like it never happened.
“I was very fortunate in that the GP did some bloods and I was diagnosed straight away. That doesn’t happen a lot because the testing is disastrous.” Sally’s first blood test found she did not have enough B12 and the second revealed pernicious anaemia, rather than a temporary condition due to an unhealthy diet.
In line with national advice, she was prescribed a series of B12 injections known as “loading doses” to bring levels up to near normal. “It felt wonderful to be told it was just a vitamin deficiency because I naturally thought it was easily treatable,” she said. “Sadly, it’s not as simple as that.
“After the first injections I started to feel better but within two weeks I could feel the energy evaporating. I was wiped out. I didn’t want to wait two months for another so I could feel a bit normal again.”
The GP referred her to a neurologist but Sally turned to the internet to buy the treatment so she could inject herself as often as she thought fit and carried on having regular shots for eight months.
“The doctor wasn’t prepared to teach me how to do it but I’ve been injecting horses for 30 years so it wasn’t such a big thing for me to do,” she said.
“I don’t go to the doctor for it any more, but some people have a needle phobia and can’t do that. They shouldn’t have to.
“It’s inexcusable what is happening. They are really letting people down.”
Sufferers claim the recommended oral alternative medication, which costs between £7 and £14 for three months supply, doesn’t work because they cannot absorb B12 and claim it is only suitable to boost a vegan diet.
Roy, a technical support officer for a car company, also sourced B12 abroad after his retired book-keeper wife Marie Brown from Cheltenham told her GP that she felt too ill to go on a planned cruise.
“Marie had always been very active and would walk for miles but her gait started to stiffen and if we went shopping she would suddenly say ‘I can’t walk any more’ ,” he said. “The doctor was marvellous and when he diagnosed PA, all the other symptoms fell into place. I knew that in the old days they used to make people eat lots of raw liver. What I didn’t know is that they would give her a course of injections to get her back on an even keel and then leave her swinging in the wind.”
After a second GP backed the first they opted for private injections at £25 a time, until they learned how to do it and then bought B12 on the internet where it is available at around 80p to £1 per shot.
“Although it was perfectly legal, I kept thinking ‘is this really us,’” said Roy.
“It’s only a couple of quid but we are worried they will close the loophole or stop us buying them when we leave the EU.”
Sufferers point out that some patients in the UK are taught to self-inject for conditions like cancer and diabetes and say GPS should help them do the same rather than making tablets the norm.
Gloucestershire Clinical Commissioning Group is being urged to follow the British Society of Haematology guidance which recommends that where possible, injections continue as normal during the Covid-19 epidemic or be resumed as soon as possible afterwards.
Covid-19 has prompted some GP surgeries to review their prescribing Official guidance says pernicious anaemia is no longer considered pernicious after it has been treated and maintenance tablets and injections are only needed to ensure it does not return.
A spokesman for the Gloucestershire Clinical Commissioning Group said some of the advice was temporary because of Covid-19 and surgeries will be resuming injections when deemed necessary soon. “In 2019, NHS Gloucestershire CCG produced recommendations regarding the NHS prescribing of Vitamin B12 in line with NICE guidance,” said a spokesman.
“These recommendations include promoting the purchase of over-thecounter Vitamin B12 tablets, as directed by NHS England.
“In April 2020, as in most areas across England, the CCG recommended that where possible, GPS should postpone the administration of injections (including B12 injections) in surgeries to avoid the need for patients to visit surgeries at the height of the pandemic.
“This prompted some GP surgeries to review their prescribing of vitamin B12 in line with the 2019 guidance, if they had not already done so.” They said the prescribing guidance in Gloucestershire aims to promote high standards of care within NHS guidelines and any patients who feel they are not getting the correct care should contact their GP, adding: “Any patients who still have outstanding concerns should contact the Gloucestershire Patient Advisory Liaison service (PALS) at glccg.pals@nhs.net or call 0800 0151 548 to discuss their concerns further.”
The Pernicious Anaemia Society say the vast majority of patients tell them they do not respond to High Dose (1-2mg) Cyanocobalamin tablets and say patients should not be forced to switch to supplements. The Society recognises that there are “serious problems” with the way in which the disease is diagnosed and treated and have asked NICE to undertake a full review, which has been agreed.
The doctor wasn’t prepared to teach me how to do it but I’ve been injecting horses for 30 years so it wasn’t such a big thing for me to do
Sally Norris