"B12 Deficiency/Pernicious Anaemia"

In December 2021 I felt as if I were dying. It was at the end of a very stressful time in my life and I'm in my 70s. I was at a very low ebb and I knew that something was seriously wrong.

Just before Christmas my GP ordered a blood test and, probably because I had a long history of taking first H2 Blockers (ten years) and then a PPI (five years, both unmonitored) they asked for a B12 count. It came back shockingly low and the next day I began loading doses of IM B12 as per the NICE protocol.

I then went on to three-monthly, but after an initial pick-up, I declined. Nor would my medical practice increase the frequency. I knew this was what I needed. I paid to have a repeat of the loading doses privately and then managed to negotiate every two months with the practice, the most they would agree to.

I then began a monthly regime between the NHS and privately. The private shots involved a round trip of 40 miles. I knew this was still not an adequate regime so I decided to self-inject sub-cutaneously, a procedure that was both safe and that I could manage myself with initial supervision from a retired nurse friend.

My GPs clearly feel bound by the current NICE protocol, even though it is insufficient for some sufferers. It is currently in the final stage of review, due out 6th March. I would argue that the loading stage of treatment should be longer depending on symptoms. It seems to me that symptom-led diagnosis and monitoring is not applied to the treatment and management of this very difficult and life-altering condition. We struggle and some of us endure radically altered life circumstances to cope with this dreadful auto-immune illness.

Sadly, I do not feel that I can disclose my self-treatment to my surgery. Because of the protocol-driven and rigid parameters I would be even further outside the support of the NHS than I already am. My NHS treatment might even be terminated, as some have experienced. My greatest support is from the PA (Pernicious Anaemia) Community. If I experienced as much support from the NHS, life would feel a great deal more secure than it does currently. Apart from my two-monthly shots I feel like an outsider.

I've since discovered another condition that I believe is associated with PA. I had to seek help privately (on my credit card) to get the help I needed. This was mostly because my blood test numbers were within the accepted range. Again, it is this one size fits all approach to treatment and management that is, I believe, partly responsible for the sclerotic nature of primary care.

I imagine that for cost reasons GPs are bound to follow protocols and interpret rigidly. In my view, this is not good medicine and a very false economy in the longer term. The consequences for the individual can be disastrous. The cost for the NHS in further tests, scans and any number of investigations must be very high. This inefficiency is passed on to the sufferer who has to travel and wait, often in more than one location, for these investigations.

At least with my latest condition the specialist consultant and GPs are conferring and my surgery has been very responsive to the specialists requests for tests.