Pay twice for the NHS – I don’t think so…

£10-a-month fee to use NHS: Outrage at call to end era of free healthcare screams the Daily Express.

Just one tiny snag – what free healthcare? The NHS is funded from taxation – it has never been free. Free at the point of need is NOT the same as intrinsically free.

And if we pay £10 a month, will we get a NI refund or reduction? In your dreams!

I get 14 drugs on prescription, without many of which I would die. However, I also have to buy

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Is my M.E. really Addison’s Disease?

 

The more I learn about Addison’s Disease the more I’m convinced it’s been creeping up on me for decades. Steroids, taken for my respiratory problems (COPD since 1996), have probably slowly trashed my adrenal glands. Taking steroids causes the adrenals to reduce their cortisol output until, eventually, they stop entirely, while also ameliorating the more dangerous effects of adrenal failure, aka Addison’s Disease – it explains so much that has no other explanation but which has tended to be written off as just more ME/CFS crapola.

Consider the timeline:-

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My last letter to my GP re Addison’s Disease…

Hopefully my last, anyway – I still need injectable steroids for Addison’s support, hence this letter:-

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March 29, 2014

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Dear Dr. Xxxxxx

Thank you for your letter of March 26.

I am deeply unhappy to learn that, once again, APH have obscured vital information. What is wrong with these people? Does no-one there do their job properly? This ongoing incompetence is just one of many reasons for my reluctance to go anywhere near the place. I still don’t know, for example, why I spent about 10 days (unconscious for part of the time, I lost track), in the Stroke Unit in August last year – nobody would tell me.

To set your mind at rest, I have

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A Spanish-inspired casserole of butter beans, fish, and red peppers…

If I say so myself, this, the original version, is a great dish https://ronsrants.wordpress.com/2013/05/18/hake-with-judion-de-la-granja-paella-rice-and-tomatoes/

However, worsening disability requires a simplified version as the prep is just way too much work (and good hake is very hard to get hold of – we ship most of our catch to Spain), so that’s the task for this weekend, using Pollack.

Asda sells decent-quality skinless frozen Pollack fillets at £4 for a 900g bag, so I’ll be using some of that (you need a fish that’s not going to disintegrate in the stew, and I find that cheaper species, like Pollack or Coley, hold together reasonably well. Flavour is OK too – a tad more assertive than Hake, perhaps, but that’s not necessarily a bad thing.

This was originally inspired

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More on Addison’s Disease…

As you might have read, Addison’s was diagnosed a year ago this month but, hey, here’s a fun fact – nobody bothered to tell me!

I recently figured it out and wrote to my GP (broken link to NICE fixed), requesting that he confirm the diagnosis, as I had received no support or information from him or anybody else during the past year. That was on the 20th – today I got a reply (apparently he’s been on holiday and, of course, no-one had the brains to tell me).

He confirms I have Addison’s – not that I had any doubt, but that matters, as you’ll see  – and says that APH didn’t tell him, either. He’s increased my hydrocortisone (hydro from here on), script.  Don’t know what to, he doesn’t say. We’ll see.

In the meantime I can take antibiotics to treat my leg injury (I have to double my hydro dose if I take antibiotics now – that’s obviously why they made me so ill last year – I didn’t know that).

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Why I can’t change GPs…

People keep asking me why I don’t change GPs, and I’m getting awfully tired of trotting out the same information time after time after time.

So, this is why.

First, changing GPs is no guarantee that I’ll be better off – it’s very much a leap in the dark.

And I readily admit that I am an expensive patient – I take 16 drugs and I need more for my Addison’s (Hydrocortisone is absurdly expensive), and at one point last year the dressings for my legs cost £45 a day (and might well do so again). Now, when every doctor is counting the cost of everything, I might find it very hard to find a GP to take me on. Continue reading

Addison’s Disease – Another letter to my GP…

My GP has failed to respond to my letter of March 20 . This is my follow-up. Being tactful didn’t work, so let’s see what response the direct approach gets.

 

March 27, 2014

 

Dear Dr. Xxxxx,

This is a follow-up to my letter of March 20, as the situation remains unresolved.

I know I have Addison’s Disease, as I said, and I have to ask why I am not being treated in accordance with NICE guidelines or those of the Addison’s Clinical Advisory Panel? It’s an issue I would have raised earlier if anyone had actually told me I have Addison’s. This time last year I was told in APH I had adrenal insufficiency which, at the time, meant nothing (the hydrocortisone indicates Primary Addison’s). No further information was forthcoming either then, the other two occasions I was admitted last year, or, indeed, at all.

For the past year I have had the bare minimum of hydrocortisone tablets which leaves me zero scope when it comes to dealing with, and hopefully preventing, an Addisonian crisis. The Addison’s Clinical Advisory Panel recommends prescribing 6 months worth of hydrocortisone tablets, to ensure that the patient does not run out (and, of course, has ample for emergencies, which I do not).

I have little doubt that, had I been able to follow the NICE guidelines, my lymphoedema might well have had a less devastating effect on me than it did but, of course, I wasn’t able to.

Currently I have injured my right leg. Because of my lymphoedema, what should have been a minor injury, and merely inconvenient, has become extremely painful and disabling and, acting on the NICE guidelines I have increased my hydrocortisone appropriately, which has helped. As the skin is broken I am taking 500mg Amoxycillin t.r.d. (I have my own stock, as you know), as prophylaxis – I do not need another infection. This, however, should be supported by doubling my hydrocortisone intake. I did this for 2 days – I do not have enough to continue unless I can be sure of getting what I need. I am sure it would have helped last year, too, when I had to take quite a lot of antibiotics. And, of course, I need them to treat COPD flare-ups.

I am a member of the Addison’s Disease Self-Help Group (http://www.addisons.org.uk/index.html ), and, as recommended, I have my own injection kit – I have even arranged for scheme manager, here, to inject me should I be unable to do so myself, though I have nothing to use in it yet, of course. I hope I won’t need it, but better to have it and not need it, than not have it and die.

I live alone, as you know – should I be struck by a crisis, injecting myself is my best chance of survival – the administration of hydrocortisone, tablets or injection, is highly time-sensitive. As it is pre-mixed I believe Efcortisol is the best option, for ease of administration (the Addison’s Clinical Advisory Panel recommendation is 5 vials).

I have a MedicAlert bracelet listing all my conditions but giving prominence to Addison’s. And I carry a steroid card on the rare occasions I am able to go out.

I have, in fact, everything I need, especially information, with the exception of sufficient steroids to allow for the possibility of surviving this condition which, as I’d hope you’d be aware, is far more dangerous to me than it would be to someone who is normally fit and well.

I am at a loss, therefore, to understand why I have not had a reply to my letter of last week. And why, indeed, I have not been issued with adequate drugs – hydrocortisone in tablet and injectable forms. Their use is, after all, standard procedure in Addison’s.

This really does need resolving very quickly – with the minimal hydrocortisone I’ve been on, I could have died at any point over the past year. Given how extremely ill I’ve been, it’s probably just dumb luck that I didn’t tip over into a full-blown Addison’s crisis. I still could.

That risk still remains – it has to end.

Yours sincerely,

 

Ronald W. Graves.

Veggie Kitchen Tips – Cutting costs and colouring soup…

One of the problems making soup (specifically this one) with canned beans is that there is no bean stock for flavour. While weight for weight, canned beans cost the same as soaking and cooking your own (more or less, depending on brand – I use Napolina exclusively – and special offers), there’s no getting away from the lack of stock. The solution is to soak and cook your own – and cut food costs while doing so by using a slow cooker.

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I wish that for just one time you could stand inside my shoes…

– Bob Dylan, Positively 4th Street

And just for a brief while – it might bring understanding – I wouldn’t wish longer on my worst enemy.

There are people from whom I expected – not unreasonably since they claim to be friends – a degree of support and understanding for why I am so angry at my doctors, and so scared that their neglect will kill me.

What I got instead, when I asked for a little help and support** was Continue reading