Which consultant?

[Whiskymack]

Like a lot of people on this forum I am not very happy with the treatment I get from my local GP.

I am considering going private, hopefuly for better advice and treatment. Which type of consultant should I be looking for.

[Helliborous]

I have recently seen a Gastroenterologist for Gastroscopy. He couldn't however give me any advice regarding diet and so on that would need to be a Dietician.

[Helliborous]

Also he had to refer to information from the internet for current guidelines regarding ongoing surveillance for future Gastroscopies which didn't fill me with confidence.

[charks]

Without a list of consultants specialising in B12D ( which unfortunately doesn't exist ) IMO going to a consultantant is a waste of time. The odds are that it would be a very disappointing (and expensive ) consultation.

[Narwhal10]

Hi Whiskymack,

Welcome here. I agree with charks. There is no specialist here in P.A. so you will be disappointed.

The most important thing is grabbing the Data at your GP Surgery. Apply for your notes through the standardised documentation on the Information Commissioners Office using the Freedom of Information Act (2000).

So, you have evidence in you hands of Diagnosis including :-

1) Blood results.

2) Administration of Hydroxycobalamin.

If you have not already then please consider joining the Pernicious Anaemia Society, membership is £10 - £20.00 a year.

🐳

[Jason_h123]

Dr Andrew Klein at the Cambridge iron clinic made a huge difference to me and came up with a great plan for future treatment which the GPs now follow religiously!!!

[Narwhal10 in reply to Jason_h123]

I hear great things of this man. Many say the same.

Thanks Jason. I hope you are well on the road to recovery.

[Mixteca in reply to Jason_h123]

Yes! He's one of the few B12 specialists there are in the UK, as well as in iron. I would also recommend him.

[Sailinglady]

I asked for referral to a haematologist (NHS funded). It took a few months to be seen, but was worth the wait. They're the most likely to understand about B12, or at least be sufficiently aware that there are many unanswered questions.However, I've also noticed other people saying that their haematologists were less useful than mine, so there may be an element of luck in getting one who understands PA.

I also had a referral to a neurologist (less useful as they knew nothing about antibody negative PA, but we're happy to let my harness manage it) and nerve conduction studies.

[mickeymouse42]

It's common place for people to leave University with £30K of debt. Unlike many graduates who struggle to earn a living after University and will never pay off the debt, people who study medicine have a tough time at the beginning of their career as junior GPs or registrars but will over time become consultants or GP partners and be very well paid.I agree that we don't need more managers but the medical profession needs to change. It's a huge problem that most GPs can't diagnose or manage PA effectively.

I find it much useful to be to talk to patients about diseases as for most clinicians diseases are abstract concepts.

The one thing that would improve things enormously would be if one could access diagnostic tests without having to see clinicians. A 10 minute GP appointment costs £45 and an appointment with a hospital costs £167. NICE estimates that most blood tests, stool tests and ultrasound tests cost far less than a GP appointment. Most scans are estimated to cost about £100 (including radiology report).

We need many more clinicians who do treatments (surgeons etc) but the pointless diagnostic appointments need to be eliminated. We need fewer diagnostic doctors so that many more scanners can be bought.

Stanford university did a recent trial and ChatGPT significantly outperformed medical students in exams. Even a session with Dr Google is much more useful than a time limited appointment with someone who has no idea who you are and has never had the disease you are trying to manage.

[mickeymouse42]

Dr Google introduced me to the PA society, then to Health unlocked and to people who understand B12 much better than any clinician I've ever spoken to.I've always wondered whether I would have been better off having appointments with Mary Beard. Much medical discourse is shrouded in a weird mixture of mumbo jumbo Latin and Greek. Nobody knows the origins of the word orthopaedic or orthopedic - the latter seems more illuminating.

It's hard to know how any of these problems will be fixed.

[newlandvale]

Why shouldn't we expect PA to be managed more effectively? AI would put together NICE Guidelines more effectively without the costs and bias that we have now. Computers mostly work fine without the need to take the hard drive apart

[mickeymouse42 in reply to newlandvale]

ChatGPT underpinned by the NICE website, the Cochrane library and the Mayo Clinic's web site would be much cheaper and better than the NHS's current diagnostic model. The NHS web site is far too simplistic.

If Symbolic AI is harnessed to work with ChatGPT, there's a path to an explanatory system as well.

[mickeymouse42]

You're right about getting MPs to approve SI.

I've primarily used C, C++, Java, Javascript (Typescript), Pascal and various assembly languages.

[mickeymouse42]

The NHS is making some progress - the NHS app is a major step forward.

The key change in NHS systems needed is to open source all the code to see what's there.

HMRC have open sourced all their code and they're on the right track; HMRC manage all tax data and make it available via a REST API written in Scala; Kotlin would have been a better choice. HMRC expect the UI to be written by Intuit, Xero etc. It's all well thought out and eventually will deliver a robust (but costly) system.

I haven't a clue how NHS systems work and until they are open sourced, it will remain a mystery.

I wonder what the Home Office systems are like 😀

[mickeymouse42]

Breaking the NHS into 100 different trusts who could innovate as they saw fit sounded like a good idea at the time. As you say, I'm not sure it's worked out that well.

We should have followed the French system which empowers patients.

[Narwhal10 in reply to mickeymouse42]

I think we have HIGH -Jack’d WhiskyMack’s Post enough. Totally unfair. So, after this, I shall be deleting my replies. They asked for help and we have completely overtaken which I believe is rude. One must have decorum on these sites.

[Mixteca in reply to mickeymouse42]

It was never a good idea. Neither was selling off the profitable sections of the NHS and underfunding/cutting all the others. That wasn't the plan when the NHS was formed.

[mickeymouse42]

I don't like social media either. The gastro disease that affects my B12 levels has a patient support group; unfortunately it uses Facebook rather than Healthunlocked so I'm bombarded with ads every time I want to ask a question 😅

[mickeymouse42]

The French system is a subtle system based on insight on how to organise human administrative structures.

When you listen to the permanent secretary of the Home Office answering questions from MPs, it makes you wonder whether we've lost our way.

[newlandvale]

You asked earlier "I am a Computer Scientist, which languages do you program in please ?" Mine was FORTRAN - along time ago.Have you any idea why my old computer will only run whilst I hold down the ctrl key?

[Narwhal10 in reply to newlandvale]

This post is about WhiskyMack wishing to receive advice.

[KatieG75147]

I saw a haematologist through Bupa last year. He was of limited help. His mindset wasn't that different to the GPs, in that he said one injection had enough B12 to last 12 weeks so was reluctant to accept more frequent treatment would be helpful. However, he did instruct the GP to do another course of loading doses and subsequently reduced my injection frequency to 6 weeks, which was helpful and initially made a lot of difference. That was in January and I've started struggling again since late June. My GP wrote to NHS haemotologists. They agreed to bring injection frequency to 4 weeks, but have refused to give me an appointment and basically written me off. I can't see much value in trying to see one privately again at this point, so trying to work out what my other options are. I agree with other posters that I think it really just does depend on who the individual specialist is, and therefore how much they're willing to listen, much more than what their speciality is. Good luck with your journey.

[JanCymru]

Well, I can only add that my PA was picked up, properly diagnosed (and I have a supporting letter to confirm it and future treatment), by a Haematologist. After seeing GP for years, then gastroenterologist (privately in the end), being diagnosed Coeliac but still being very unwell, it was a the Haematologist who saved me.

[Whiskymack]

I would like to thank everyone who contributed to my question. I found the answers helpful and very interesting.

Thanks again 🙂