PAS conducted a survey this year focusing on NHS England Prescription costs and vitamin B12 injections, attitudes to self-administration and the financial burden. PAS is collating evidence to better understand the burden of disease and encourage further research into this area. Our survey report is now published on our website and will add value to the discussions at the House of Commons Reception on 10th September under the B-12Alliance banner.
Here are some highlights
Inadequate NHS Injection Frequency
Nearly half of the surveyed patients reported having to purchase B12 ampoules or supplements privately in the last 12 months because standard NHS injection frequencies were insufficient to manage their symptoms.
Significant Impact on Daily Functioning
Despite receiving NHS treatment, almost half of respondents reported that their treated B12 deficiency continues to have a significant impact on their ability to perform daily tasks or leaves them completely unable to do so.
Unmet Demand and Barriers to Self-Administration
While patients who self-administer reported better outcomes and reduced daily impact, 55% said they have never been offered or discussed self-administration with their GP, and 24 respondents who requested it were refused due to local practice policies.*
Postcode Lottery in Primary Care
Access pathways, repeat prescribing arrangements, and treatment frequencies vary considerably between GP practices rather than following a consistent national approach, creating wide inequalities in patient care. These are not even regional variations; they are variations within regions.
Hidden Financial Burden Across All Patient Groups
Although 95.5% of retired respondents are exempt from direct NHS prescription fees, age-based exemptions do not protect patients from out-of-pocket costs; the patients surveyed spent an average of £151 per year privately to source extra supplies.
*Note that while IM remains the only licensed route GPs are still less likely/comfortable/less aware of this option.
My 95 year old aunt with PA has been told the NHS will no longer be giving her her 3 monthly injections….but she can buy B12 tablets from a pharmacy, is this a NICE directive….with PA, will she absorb B12 in tablet form?
No, this is not a NICE directive. The NICE Guideline clearly states that in the case of PA injections are needed, life-long. “Offer lifelong intramuscular vitamin B12 replacement to people if: autoimmune gastritis is the cause, or suspected cause, of vitamin B12 deficiency”. https://pernicious-anaemia-society.org/articles/nice-guideline-on-b12-deficiency-in-over-16s/
I was diagnosed with Pernicious anaemia in 2012 and SACD in 2015. I have been managing on 12 weekly injections, then 8 weekly. But recently I have noticed an early return of symptoms. especially fatigue, weakness and balance , also the burning in my feet seems to be climbing up my legs. I have L’hermittes sign. I have tried several times to persuade my doctors to increase my injections to 6 weekly but they flatly refused, saying my b12 is high enough, it wouldn’t help to have more and it isn’t recommended. The fight goes on.