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Pernicious Anaemia Society

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PA and Private Health Insurance

Wwwdot profile image
12 Replies

Hi Guys

I wonder what other’s experience has been with private health care and PA? As I am self employed I have private health care as I cannot afford to be off work although I have not worked for the past year .

My health care policy is up for renewal and I have found it such hard work begging and explaining what consultation I want and why. They do not understand PA and they won’t pay for my B11 either as my GP thinks I don’t need it other than 1 jab every 12 weeks.

Apart from the initial PA consultant and the neurologist that were relatively straightforward to arrange I have now hit a brick wall. They will pay for me to see a nutritionist but do not recognise them as able to recommend tests such as H. Pylori and SIBO! So what IS the point of such consultations and what a waste of time the last 4 months has been!

I have worked out that what I pay in premiums is far more than what I have spent this last year so thinking I put the premium in a health pot and use as I see fit without the hassle. I am still on a waiting list to see a NHS gastro (10 months now) but I am eating and feeling so much better so less concerned than I was.

What do others do?

Thank you all in advance.

🤗🤗🤗🤗🤗

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Wwwdot profile image
Wwwdot
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12 Replies
Thrones12 profile image
Thrones12

Hi dot. I don’t have private insurance but do mostly pay privately. I’d suggest you hold onto it if you can because we all know with one autoimmune condition others usually follow so you may need more help/tests in the future ..like everything in life only you know if it’s affordable and how cooperative your nhs gp is overall so it may be worth keeping your options open. Best of luck x

Wwwdot profile image
Wwwdot in reply toThrones12

Hi my friend

It’s such a dilemma isn’t it now vs tomorrow?. I have spent so much on premiums and I am fighting to get less than 5% back In treatment and it’s a challenge. It’s the admin and bureaucracy that is sapping me of access - I can’t cope with ill health and fighting. Thank you for your kindness and counsel. Both much needed. X

🤗🤗🤗

HeartyGilly profile image
HeartyGilly

One jab every 12 weeks is not enough for most of us. I can get 8 weekly on the NHS but need them monthly. So, like most of here, I self inject. Is that something you would consider. It is easy and cheap.

Wwwdot profile image
Wwwdot in reply toHeartyGilly

Hi HeartGilly

Absolutely. Thank you for taking time to reply. I self inject every day but it’s the gut side investigations that are taking so long to get approved.

It’s a dilemma for sure.

tomdickharry profile image
tomdickharry in reply toWwwdot

I was diagnosed with PA in 1989 after macrocytosis was found during severe gut investigations. After loading doses was put on 12-weekly injections, later 8-weekly. However still suffering gut-wise. It's a long story but after injections stopped in 2020 and health deteriorated I discovered self-injecting. I found that twice-weekly injections vastly improved ALL of my symptoms, but most spectacularly my gut problems.

Now, apart from occasional dietary indiscretions as I experiment with foods I couldn't take previously, my gut problems are gone. I haven't been this well for more than 30 years.

So my advice would be to self-inject, find your best frequency, and I hope that, like me, your body will heal itself.

Narwhal10 profile image
Narwhal10

Hi Wwwdot,

It is carefully balancing the options from a financial aspect.

I’m in the U.K., I have worked for the NHS, I have private health insurance and have private health care. I telephoned for a private GP appointment, last week.

HeartyGilly made a very valid point. 😁

Looking at the big picture, your private health insurance would cover other conditions, illnesses, diseases.

So, say for example, your health worsens (I am not wishing this on you, in the slightest), with new signs and symptoms developing. You can receive medical attention, investigations, diagnosis and treatment by having private health insurance sooner.

If we have one autoimmune disease then we may have others. I collect them like stamps. 🤣😂 One of them is a Blue Hawaiian missionary stamp.

😘

Wwwdot profile image
Wwwdot in reply toNarwhal10

Thank you Narwhal

I will mull!

🤗🤗🤗

Narwhal10 profile image
Narwhal10 in reply toWwwdot

Exactly,

Pooh was good at this. He had lovely friends with Piglet, Tigger, Owl and Christopher Robin. 😘

Winnie the Pooh, Take time to Think.
Wwwdot profile image
Wwwdot in reply toNarwhal10

Spooky! My nickname was Pooh!

🤗🤗🤗

PAapr22 profile image
PAapr22

Hi wwwdot

My experience. I have a high level of private cover.

Endoscopy, nerve conduction, gastro consultancy were covered.

Any B12 treatment is not covered.

The results you can compile to evidence to GP that you need more frequent injections. So private allows you to get fast chosen access for diagnosis

Regards

Pickle500 profile image
Pickle500

Hello Wwwdot

When I became ill, I'd had a few issues leading up to the B12 deficiency. It started with severe gastrointestinal problems and a night and day of unusual sickness and stomach pain after which I thought was food poisoning.

After a few weeks, then a holiday to Malta, I found I had alcohol intolerance and could not sleep or pass stools without pain in my abdomen. Of course I went to the Dr after the holiday and they sent me for a colonoscopy. There were 3 polyps in there (and I have bowel cancer in the family).

I was relieved that it wasn't the Big C. But I'd only just turned 40 !

But, I believe that the way I managed the colonoscopy was not ideal. A few weeks after the procedure, I lost my job. And I began drinking a bit more than I usually would or more frequently I should say.

I think through this I was giving myself 'leaky gut' as within a few months I couldn't sleep with deyhydration and disturbed sleep. Going back to the GP, they said is was probably 'somatic' and asked if I'd been stressed. And I had been! But I know it was something more.

My symptoms continued until I had an operation on a parotid gland swelling and thyroid nodule which also appeared throughout all of this. They were both benign but still, there was evidently some issue in my body which could well have been stress but even if it was I believe it manifested in the gut.

Of course, leaky gut is not a diagnosis in the medical field. But I am convinced it is because I also went to a TCM practitioner who told me, from his cupping, that 'there's alot of toxins in the body'.

Anyway, all this led up to a severe deficiency which hit in lockdown and I could not get help soon enough. LUCKILY my partner had private medical insurance which helped me get some CBT to deal with the stress of self-treatment (I never got a diagnosis or loading doses).

However, they did not help me with B12. They denied helping me or diagnosing me - they said to me 'I think you need to check your mental health'.

while the CBT helped a bit, it was not worth the money my wife was paying every month. Then, there's been a problem with the company benefit of private healthcare and she now needs to pay HMRC extra in retrospect...!

So, we have agreed that the money she spent paying for private medical insurance is better saved every year and then spent 'ad hoc'. This way, if you need urgent care you can pay for a fast-track appointment. Whereas if you're under the authority of the private medical insurance, you have to prove youre ill and then still be on a waiting list. The only benefit may be that the quality of the care may be marginally better than NHS. But it's not much.

Hope all of that helps you in some way. I have had to self manage the whole way which is not advised. But that includes taking symprove for 9 months and focusing on healing my gut with regular sleep patterns, a proper diet, no alcohol, no coffee, no stimulants. It's almost 3 years and there's been a lot of improvement and it continues.

But I sense that you may have to help yourself to heal any gastro problems. Or consider paying for Functional Medical Doctor and you can find alot of gut specialists online and maybe one near to you. Much better than the private health care and of course you can use your saved money to go to them for help.

JanCymru profile image
JanCymru

Hi Wwwdot, I have Benenden Healthcare cover (paid in for decades), and I have seen a neurologist through that membership so some help. If you possibly can, do keep the private health cover - if you let it lapse and then try to re-join or join another organisation, generally pre-existing conditions won't be covered and as you have a diagnosis you would fall into this category. At least your current membership will offer some help and support. And with the NHS in such a sorry state I think you would lose out. Best of luck to you x

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