Mixed reviews

[Nackapan]

My daughter recieved her b12 Injection through lockdown . However after a telephone consult with Gastro. It was decided to have them 8 weekly instead of 12 weekly. Gastro. wrote to the G.p my daughter copied in. 45 min wait on phone line to surgery. She was told it's not been sanctioned by Gp they will ring her back. 4 days later they ring back. Injection due in 5 days now. Was told she can have it 10 weekly?? She tried to book it as has no fight at present . No she cant book it for just over 2 weeks time . She has to ring back. She did question this . Cant book online either . Minimum queue on phone lines 45 mi s. It's very difficult once my daughter is in need of an injection as she shuts down. Cant think properly so fatigued she cant eat well either. If I badger her to complain it stresses her as co compliant and no energy to fight it. There have been many struggles for her.

I truly think this is not only obstructive but actually cruel to let people suffer.

I've also been told by a nurse that does injections that although they carried on they are at 15 weeks rather than 12??The energy it takes to get the treatment you need is enormous. Just angry at 'the system' letting people down with such a simple thing for them to get right. Not being able to book 2 weeks in advance is clearly ridiculous and clogs up the phones even more. The nurses rota should be up. If not usually the same room and day of week is booked anyhow . Doesnt matter what nurse on duty. !!

I know what happening flue vaccines are taking precedence of nurses time....now because of some surgeries stopping b12 injections a back log of more unnecessary work of 'testing ' to see if people can have them. What an unnecessary mess. Rant over .

(Morning or ? angry. Less typos 😂)

[Cherylclaire Forum Support]

Yes, I also noticed clarity of message, Nackapan . Seems like you are expending a whole lot of your energy on this, too !

Must be very hard to hear your daughter is struggling and her life becoming unnecessarily more difficult. Why bother sending patients to consultants, just to ignore their expert advice on frequency of treatment ?

Seems those with B12 deficiency are now at the back of a lengthening queue. No wonder so many posts are questions about how to self inject and where to get needles !

[Nackapan in reply to Cherylclaire]

Yes I've mentioned that!!

I'm trying to back off. I used to be able to drive to her and help her sort things. I have problems talking on the phone still so all very frustrating. Shes a strong character and wont see 'the wood for the tree ' until thinking straight again.

Also cery compliant or doesnt go at all to Gp . G.p missed b12 for years. He did apologise though. Has a good reputation. Out of his depth I think. It's one of those surgeries that other doctors dont just pick things up so he gets behind too. When possible they will move closer .

Like you say what's the point in referrals if the Gps dont follow instruction from them. They certainly used to. The letter does say" she would benefit from 8 weekly b12 In jections but we are unclear why patients do as she will have stores for a year!! "

That didnt help!!

The saying goes' you have to be well to be ill's So she will probably still be in bed until she gets it . Just awful to put people through this.

[Cherylclaire Forum Support in reply to Nackapan]

You're right.

At your very worst, you are unable to think straight or make even the smallest of decisions. Certainly, the worse I was, the more useless I was at self-injecting. Couldn't even choose an injection site and go for it without prevaricating, shaking, tensing up, forgetting about needle change etc ....

All the problems involved in seeing a consultant in the first place:

highlighted research and medical notes/test results and prepared questions

months of waiting

travelling on public transport

anxious waiting in airless waiting-room

inability to understand what is being said

inability to use prepared notes, ask questions etc

fighting against concentration problems, sensory overload, confusion, memory impairment and time constraints

trying not to waste time by crying/ lose goodwill by shouting

disappointment at realising that the consultant does not know much about B12 deficiency or range of related symptoms, unreliability of tests, medical guidelines....

.. and then, even if you managed to educate the consultant, or convince the consultant about the connection between symptoms, or the consultant believes you, the GP can still ignore his/her report and suggestions !

Why bother ... well, what other choice do we have ?

You have to keep saying "It will be different this time, I'm going to meet a consultant who gets this, who understands and who has answers." But without getting hopes up too far.

All difficult, now more so because of the post-covid remoteness of GPs, altered medical priorities and length of waiting-lists for consultants.

Plus this new weirdness regarding B12 stores ! Just one more ridiculous rumour to add to the list and another fight we really don't need.

[Nackapan in reply to Cherylclaire]

Well said.

Absolutely agree 100%