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Vitamin B12 deficiency

Posted By Wath 23

"Vitamin B12 deficiency"

About: NHS Rotherham CCG

(as the patient),

My 12 weekly B12 injection has been cancelled by my GP because they want to keep the number of face to face contact to a minimum during the Covid epidemic. The problems this has caused me is; overwhelming fatigue, hair loss, burning feet, pins and needles in feet and face, yellowing skin, sore and swollen tongue to name just a few. Pernicious anemia and B12 deficiency due to malabsorption is under treated in the UK at the best of times and many doctors have no real understanding of the condition. Even the test for PA is unreliable. The British Society of Hematology had to change their guidelines after they made claims that were not backed up by any clinical studies. GP's across the country have treated patients with B12d in various ways. Vitamin tablets that don't work because of malabsorption issues and have to be taken in such quantity it upsets the stomach, claims that reserves stored in the Liver last 6 months or a year or 2 years. Some have set up a drive through service, some have taught their patients how to self inject. This just illustrates the disparity in treatment. What I think  is needed is a set protocol that ALL GP's work too as with diabetes.

My GP has left me with no alternative but to purchase my own supply of B12 from Europe, syringes, needles etc and after watching you tube have learned how to self inject. I am a member of a support group with 22, 000 members and there are thousands like me who have been forced into this position. Many though do not have the funds available to do this. The World Health Organization list's B12 injections on it's list of essential medicines. It is vital that this is sorted out for sufferers who have been left with little or no treatment before someone dies. I suspect nothing will change until someone does.

Complaints have been made to NHS, CCG, 's MP's, but nothing gets done as advice is sought from the same people with no understanding. In addition GP's are independent and don't seem to be answerable to anyone. Talk to the sufferers and the families of sufferers and only then will an understanding of this debilitating condition  begin to take shape. Then someone somewhere needs to start a campaign.

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Responses

Response from Helen Wyatt, Manager, Patient and Public Involvement , Quality Assurance Team, Rotherham Clinical Commissioning Group 3 years ago
Helen Wyatt
Manager, Patient and Public Involvement , Quality Assurance Team,
Rotherham Clinical Commissioning Group

I support the organisation in making sure that the voice of patients and the public is heard and used in planning services. This involves running events, managing surveys, and building networks with the local community.

Submitted on 24/06/2020 at 15:52
Published on Care Opinion at 15:52

Dear Wath 23

Sorry to hear your story, and accept my apologies for the lengthy reply.

If you are not happy with the treatment you have received, it’s always useful to discuss this with the practice manager at your GP practice, or your GP as a starting point. You don’t state which practice it is – I can help with a contact if you need it. GPs are offering telephone and online appointments, and we would urge you to consider this – only your GP has your clinical records, which any treatment decision is based on. Speaking to a clinician that knows you and has your records is really important in cases such as this; because this is something that is very much on a personal basis.

My medicines management colleagues have given me the information here to share with you, as this might help.

You raised issues about the difference in treatments, and conflicting advice. This is due to the fact that this is very much a developing area, and guidance and protocols will change in line with new and emergent research as understanding and knowledge develops.

Currently there are no national clinical guidelines on pernicious anaemia/ B12 – NICE (National Institute of Clinical Excellence) is in the process of developing national clinical guidelines for the UK to treat pernicious anaemia but as yet, there is no clear publication date. Other organisations, including British Society for Haematology may write their own guidelines based on their own research; these are not national guidelines, but could help us to develop national guidelines, if the research is felt to be sufficiently robust.

During pandemic we have been in a complicated, unprecedented situation; each healthcare provider was forced to consider -very quickly – the risks vs benefits to individual patients, and make the best decision taking into consideration many factors – size and safety of practices, for example.

An alternative if you do not wish to contact your GP practice would be to talk with one of our medicines management team, I am more than happy to put you in touch with someone if this helps. If so, can you email me on helen.wyatt6@nhs.net; and I can put you in touch with someone via email or phone, according to your preference.

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