Getting a PA diagnosis & treatment In Herefordshire & Worcestershire CCG.

[cloudspotting]

I would like to connect with others who are experincing difficulty in diagnosis and treatment in the Herefordshire & Worcestershire Clinical Comissioning Group. It would also be good to know if you have positive experience of care within the H&W CCG. I'm keen to build a picture of care within the area and a greater understanding of how to tackle the inconsistencies and lack within the system to share with others on a similar journey along the rocky road. Thank You.

- Diagnosed with Low Serum B12 Dec2020, 158ng/L (197-771ng/L)

- Prescribed 12 weekly 1ml Hydroxocobalamin IM injections

- Parietal Cell autoantibodies test Jan2021 - Normal

- Local Authority treatment level 150ng/L (No loading doses prescribed) Herefordshire & Worcestershire CCG

- Joined PAS and lodged letter to Duty Clinician at GP Surgery listing all Neurological Symptoms and referenced guidelines for treatment. This was largely ignored.

- After persistent requests for more frequent injections, now receiving trial 8 weekly 1ml Hydroxocobalamin.

- GP suggested the benefit I receive from treatment is a placebo and surgery not licenced to provide more frequent treatment and referred me to a Neurologist.

- Currently waiting for Neurological assessment before further diagnosis and treatment with loading doses. (Waiting list 9 months!)

- Battling with GP surgery receptionists and duty nurse to recognise and provide my 8 weekly trial of Hydroxo.

- Severe neurological symptoms persist when on 12 weekly treatment. Symptoms subside to moderate level with more frequent injections.

[cloudspotting]

Just like to add: this forum has been a blessing and encouraged me to start SI 5 months ago, without which I would undoubtably be stuck in a world of brain fog and incompreheshion.

[Sleepybunny]

Hi,

I wondered if you knew that CCGs were replaced by ICBs (Integrated Care Boards) on July 1st 2022.

It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.

H and W ICB

herefordshireandworcestersh...

The change from CCG to ICB may be an opportunity for them to review their b12 deficiency guidelines so keep an eye on them.

H and W CCG B12 deficiency guidelines

herefordshireandworcestersh...

These were updated in July 2022 so have obviously been accepted by the new H and W ICB.

If you search forum posts for "Herefordshire and Worcestershire" you may find other forum members from that area.

[Sleepybunny in reply to Sleepybunny]

It's likely that H and W B12 deficiency guidelines will be updated again once NICE publishes new B12 deficiency guidelines in 2023.

Draft NICE guidelines - PA and B12 deficiency

nice.org.uk/guidance/indeve...

Click on "project documents" then"consultation comments and documents". Gives a good idea on issues around treatment and diagnosis.

[cloudspotting in reply to Sleepybunny]

Many thanks. I wasn't aware of the change - still learning how to navigating the NHS system. I'm looking at how best to present my symptoms at my local Neurology assessment in particular, for when I'm lucky enough to get an appointment date. Hoping that anyone local may have feedback on some Do's & Dont's such as whether to reveal I am self injecting when presenting to the neurologist.

A forum search for 'Herefordshire & Worcestershire' has thrown up over 1,700. I'm not sure how to filter this search on the forum. Any suggestions?

[Sleepybunny in reply to cloudspotting]

Not sure, maybe just look through ten more recent posts that mention H and W.