A "FLIP-FOP" FROM THE "HEALTH AND DISABILIITY ADVOCATE"

I’ve probably said this before, but I intend this to be the last word on this.

Any illusions of being listened to, let alone addressed by the wider health system have now been removed.

BACKGROUND

A while ago I was referred for blood tests for a range of things including renal function.

I determined not to go ahead so the script just lay on my bedside table until while feeling unwell I had the tests done - all “normal” except for abnormal renal function results (high creatinine levels).

This was confirmation of what I had known for at least two years (and suspected for longer) - that I have a problem with my kidneys.

I may expand on that separately as I have discovered that I can get better answers (and even have a conversation to clarify matters) from Chat GPT, all based on top-notch conventional sources like the Mayo Clinic.

Essentially I don’t need a doctor, just a pen-pusher who can hand out the right referrals - were I able to get this past them.

They are determined NOT to diagnose anything to do with the kidneys. (or the heart, for that matter).

I am convinced this is because of a worsening crisis in the medical system in New Zealand and I think one may find a clue in the following article.

I wonder if that is why they do go anywhere near anything to do with kidneys or heart.

THE NZ HEALTH AND DISABILITY “ADVOCATE”

Based on all that, I decided to resurrect the idea of a complaint to the NZ Health and Disability Commissioner. I have always had in mind that ‘the Devil looks after his own”, but overrode that inner warning, especially after I learned that they have a dedicated “advocacy service”

Of course, the reality is that as a government agency they are there to “listen”but then defend the interests of the system.

I was quickly contacted by Makeri, who called herself a health and disability “advocate”.

At first, she seemed to be a receptive listener.

I spent an entire weekend putting together a detailed report.

Then I was told it was too detailed and would I write a summary, which I also did.

I shall post this below with a link to my original report

Then she came back with a request that I come back with dates, which I also did.

This is known as a “run around”. It can also be described as a form of gaslighting.

What was never in question was that as “advocate” she would ask them for a meeting (having previously been turned down). She would come back and say that she was not able to force them to agree to which I said (not believing for a moment they’d ever agree to see me in person) that I understood this.

And so it went around several times.

But that she would attend such a meeting was never in question.

To my question, “If they refuse and I subsequently decide to make a complaint to the Commissioner I am assuming that you would confirm in writing to the Commissioner that this is the case” she replied in an email:

If you decide after they decline your request for a meeting and you decide to take this further with The Health & Disability Commissioner, I will then close the Advocacy complaint file, and send you written notification of this. It will be up to you to submit you complaint to The Commissioner, however you could advise The Commissioner, that you used the Advocacy Service and you were not satisfied with the outcome.

Finally, after all the to-and-fro, writing and rewriting she sent me a draft letter.

***

03 December 2024

Ms Nicky McG.

REDACTED -Clinic details

Dear Ms McG,

Re: (REDACTED - my details)

Mr Westenra has sought my support to resolve his concerns about the service your organisation provided. He has requested I provide the following information in relation to his complaint.

Summary:

Mr Westenra has been registered with the Connolly Street Medical Centre since his doctor, Dr William Crawford, moved there in 2012. Due to Dr Crawford's frequent unavailability, Mr Westenra often must-see locums and other doctors.

This experience has caused him considerable mental and emotional distress, as the covering doctors are unfamiliar with the seriousness of his health condition. In December 2011, Mr Westenra was diagnosed with sarcoidosis, a serious condition with an autoimmune component.

One of the locum doctors suggested that he was obese, depressed, and had sleep apnoea, which Mr Westenra believes to be incorrect. Alternatively, some doctors would tell him that there was nothing wrong with him. Meanwhile, his physical condition continued to deteriorate, which was acknowledged when he was referred to the Neurology department at Wellington Hospital in late 2016.

At the beginning of 2022, Mr Westenra had an appointment with Dr Hugh McC, who disregarded his concerns about burning feet. A year later, Mr Westenra continued to raise these concerns and was ordered to have blood tests. However, he did not receive any communication regarding the results.

Mr Westenra requested his medical file and learned that Dr McC had diagnosed him with ME and early-onset Alzheimer’s disease. A referral to the Geriatric department at Te Whatu Ora was also submitted without his knowledge or further discussion.

Key Issues for Mr Westenra:

• No further attempts have been made to find another explanation for Mr Westenra’s health concerns.

• He believes that no one is listening to or hearing what he has to say about his health concerns. This treatment has caused Mr Westenra a lot of stress and is affecting his health and well-being.

• When he raises his concerns with the practice, he feels he is being ignored.

Response to concerns:

Mr Westenra has requested you respond in writing to each of his issues outlined above.

He has advised he will consider his complaint resolved if:

• An Acknowledgement for the emotional and physical impact this has had on Mr Westenra.

• An explanation to Mr Westenra as to why his health symptoms are ignored and not listened to or heard.

• Offer more information on how a diagnosis was given without a full health check being completed.

• Remove the correspondence and comments made about him in his medical file to prevent potential reputational damage.

All correspondence regarding this matter should be addressed to Mr Westenra at the address above. He has requested you copy me into any correspondence regarding his complaint.

The Code of Health and Disability Services Consumers’ Rights (the Code), Right 10 provides the legislative requirements in relation to managing complaints about Health and/or Disability Services. Full information on the Code can be viewed online at: www.hdc.org.nz.

***

Only after rewriting the letter to make sure all the factual inaccuracies were taken out did I notice the following:

"Mr Westenra has requested you respond in writing to each of his issues outlined above"

“In writing”?

That was never in question.

That would just give them the chance to repeat their lies.

On the basis of that I penned a letter to “advocate” Makeri:

Thank you for your letter from yesterday.

After spending a whole weekend putting together a detailed report and then summarising that into what I took to be a draft letter to the Connolly Centre and even going to the trouble of looking up dates for you, you now send a draft letter that I more-or-less had to rewrite to make it anywhere near factual.

After all that I discovered this paragraph:

"Mr Westenra has requested you respond in writing to each of his issues outlined above"

To think I almost overlooked it!

I never said that! Not even once.

Right from the beginning the talk between us was about setting up a conflict resolution meeting.

You would say repeatedly that you were not able to make them do that and I would reply that I understood that and pointed out that I did not think that they would accept the invitation meaning they had refused to meet me for the THIRD time, something I thought would be automatically grounds for a complaint.

Now without any discussion you have changed the terms of our discussions. In fact you have tried to sneak this into a letter, something I cannot but see as hostile to me.

You will be aware, if you had read my report, that I had closed off any two-and- fro written conversation because it just gave them license to repeat their attacks and lies encountered by me.

So what you write is completely unacceptable to me.

I have been injured by the experience and you have in effect opened that wound again. I only opened the whole affair because I had received blood test results that confirmed what I have known in myself for 2-3 years - that I had problems with my kidneys.

I now regret that decision.

The way I see it is that (possibly unconsciously) you have taken the side of powerful people who have the power of the State behind them which is reflected in the extreme difficulty of getting an "advocate" to ask a medical centre for such a small thing as a conflict-resolution.

In your letter you seem to me to have taken a side.

We live in a world that is pitted against the small person.

In that struggle, at least in the last four years, Truth and decency doesn't even get a foot in the door.

For that reason I cannot trust you any more and cannot work with you.

You're sacked.

Robin Westenra

This morning, as I was writing this I received a reply to yesterday’s email.

Good morning, Mr Westenra,

Due to the information that you shared with me after I agreed to support you with a complaint, I will be unable to assist you with a complaint. The fact that the information that you shared, the provider has already said the relationship has broken down.

If you are not happy with our process, fact, and content of the letter, it is in my professional capacity that I am unable to construct a letter of complaint to a provider in the words that you are wanting to convey. I encourage you to self-advocate your complaint.

The outcomes you are seeking are a Privacy Commissioner issue not a health and disability matter.

I note that the provider has informed you that the patient and doctor relationship has broken down, they have suggested that you find another medical Centre. Advocacy service is unable to change this outcome.

Kind regards,

Makeri Lee| Lower Hutt Advocate
Nationwide Health & Disability Advocacy Service

To which I quickly sent off the following reaction:

Thank you for that. Spoken like a true bureaucrat without a shred of humanity. Well done!

Robin Westenra

I should have answered, “you’ll go far”

See how it works?

The Devil does, indeed, look after his own and the State will always conspire to protect their interests.

The little person, the patient, be damned! You are a “consumer”

Here is the detailed report I wrote. I have continued, for whatever reason to edit out the details - it rankles with me but is done in self-protection

POSTSCRIPT: MY REPORT

To: Makeri Lee

Re: C. Medical Centre - Drs Hugh McC., James L.

I have been registered with the Connolly Street Medical Centre (formerly, the Pretoria St Medical Centre) since my doctor, William Crawford moved there in 2012.

Because he is Canadian and until 2020 divided his practice between Canada and NZ I was frequently obligated to see a number of locums or other doctors.

The whole experience caused me considerable mental and emotional pain as these doctors, unfamiliar with the seriousness of my case and a previous diagnosis in Dec 2011, ot sarcoidosis, a serious condition with an autoimmune component, and was told (or it was suggested to me), that I was obese, depressed, had sleep apnoea (none of which were remotely true), all with the insinuation that there was nothing wrong with me.

Meanwhile, my physical condition continued to get worse and was acknowledged as such when I was referred in late 2016 to the Neurology department. Department of Wellington Hospital.

After a disastrous consultation with Dr. Hugh Mc. at the beginning of 2022, in which he disregarded my concern of burning feet I did not go back to see him for about a year and decided to write a letter setting out my concerns and asking for a session in which we could discuss these matters.

Instead of that, he ordered blood tests and, in my view, tried to deflect my complaint into a sudden (and unasked-for) discussion of my medical condition and mentioned his contention that I have Myalgic Encephalomyelitis, (aka chronic fatigue syndrome, or his slur, “Tapanui Flu”) and that he wanted to refer me to a geriatrician.

Why a geriatrician became apparent when I received my clinical files where I learned that in addition to ME he was diagnosing me, (based on a misreading of some cognitive tests ordered by the neurology department), with early-onset Alzheimers Disease.

Since then I have written two books!

After an acrimonious phone call he decided that I had upset his trust and the “patient-doctor relationship” and he couldn't see me any more or even speak to me.

My attempt to address his letter to me with some facts from my perspective just reinforced that.

I have discussed this at great detail here:

https://docs.google.com/document/d/1PK4ME8hs-LxTUNSeJ1ew2Xersgs_W8KluRZCl7DJVug/edit?usp=drivesdk

I made another attempt to set up a meeting to discuss this which was flatly turned down in a letter from the practise manager.

I have seen a junior doctor, James Laurent, since then but my experience with him only reinforced this situation.

My concerns were reinforced by some recent blood tests that strongly suggested a problem with my kidney function although the situation has been muddied by a subsequent “normal” blood test.

My position has always been that when selected blood tests come back “normal” the correct response would be, not to ignore my obvious bad health,but rather to make some attempt to find another explanation for this.

This was never done and the responses have always seemed to me like ‘gaslighting’.

I have never expected miracles but I do expect candour and honesty and an apology, such as I got from the Neurology Department, that they have failed to find an explanation

I do have a template for how a good medic might act in these circumstances.

One example might be Dr Mark Austin (ret), who sent me straight off to the hospital with ankle oedema.

Others are the doctor at A & E who went the extra mile on scene (including consulting with overseas specialists), to diagnose my condition as sarcoidosis, Dr William Crawford with whom I had a respectful, even collegial, relationship, and all the specialists at the Neurology Department at Wellington Hospital and, to a lesser degree, Lower Hutt Hospital.

I may not always agree, and sometimes feel they are going in the wrong direction but it has never crossed my mind to complain.

I feel now as though I am going “down the gurgler” and there Is no one to listen to, let alone hear me.

In the case of the Connolly Centre I feel as if I am being pushed down the gurgler.

It is often said that stress is a major component in disease. If that is so, then the doctors at the C. St Centre (and before that, the Pretoria St Centre), are major causes of my declining condition.

My main aims have always been to be listened to and heard. However, that has never happened so my responses have become more and more shrill and this has been interpreted (possibly wilfully) as unforgivable rudeness. In the only two occasions I have had a chance to speak to somebody I may have raised my voice, spoken very directly but never sworn or threatened anyone.

Even now, my aims have never changed and should I ever get a chance to have a meeting with them facilitated by a neutral party, I would try to communicate my years of physical and emotional pain but to add that I am not a vindictive man and would be capable of forgiveness.

However, for me there is no forgiveness without repentance, or, at the very least, some recognition or signs of contrition.

If that could happen we could shake hands and depart In peace.

One other thing that would be needed for such an agreement would be for the correspondence and the comments made about me in my file be expunged from the record. Should I ever transfer over to another medical practice I want my medical record to go, not the private thoughts and messages of Dr McC, which may cause reputational damage to me and colour the judgement of any successor as has already been the case with Dr L.

My preference would be for a meeting rather than a letter.

Any written response in my mind would likely only continue previous patterns.

If there could be a meeting of minds along the line I have laid out above I would be delighted.

Should the talks fail or (more probably, in my mind), Dr McC refuses to meet me for a third time I shall proceed with a formal Complaint to the Health and Disability Commissioner.

I hope that, expressed as succinctly as I can, explains the situation.

Best wishes,

Robin Westenra

POSTSCRIPT

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