About the New NHS Telephone Consultations…

Get comfy, this is not an exciting read. It’s personal and very boring. I have some good points, I think. It’s a hard time for many of us, if not all of us and those of us with mental health problems are finding it hard to get any kind of advice.

I have two people I trust. They both suggest different things. I am at a loss with this one. This isn’t about my mental health it’s about my physical health but it’s impact on my mind is tangible.

During the covid19 pandemic the NHS has been going ahead with the implementation of digital consultations. They have basically worked out that they don’t actually need to see the patients they can treat them on the phone or by email.

Why have actual patients at all really? Just use our NHS numbers and bill the Trust anyhow? I feel like a used car being bumped between garages until my red warning light goes on. I hope to God that not everybody’s care is like mine.

I have had several of these ‘consultations’ now and quite frankly they could be better and feel like they are a waste of my time – they could be useful but unless doctors do them properly there is no point other than the pay load for the doctor or getting medicines prescribed ( I appreciated that when I had a virus in my eyes in the Spring).

One of my conditions is lung disease…it was diagnosed in my late thirties by a shadow on the lung seen on an x ray taken at Watford General in 2009 but I’d been suffering with vomiting, fainting, and heavy mucous and digestive problems since seven years old, intermittently.

I got diagnosed when I was sent private to the BMI Harrow 2008 for my bladder and they saw cysts throughout my other organs. I told my GP and then I was sent for the chest x-ray as my rib cage, at the back, hurt. I had a large lipoma there and it was removed in case it was causing pain, but it was nothing sinister and the pain persisted.

My NHS treatment has been reasonable. I was attending a Watford General clinic, their Thoracic department of Respiratory Medicine every six months to see a doctor there called Flip (not real name). They’ve done some gas exchange tests and learnt I’ve around one third of my lung capacity left but that was some years ago.

Flip is nice and friendly but not very attentive to my condition and wellbeing…like he does seem to care but often forgets he has seen me. He has twice written to my GP saying I didn’t turn up for clinic when I had.

I always have someone with me. So, it was all witnessed that I had attended, I’ve never missed an appointment with him but have several letters saying so. So, he seems like a good doctor but old and perhaps a little distracted generally? He’s very likable.

We are in the middle of a pandemic with Covid19 so my appointment for the end of September this year was cancelled, by letter, from the Thoracic dept. at Watford General. I didn’t mind. Nothing can be done for me, so it is just me and the doc touching base so to speak. He has seen me go through many changes over the last decade.

It was surprised when I got a call from a consultant based at another hospital. She introduced herself as Dr Thingmabob (not her real name) based at St Mary’s, London. She knew all about me and obviously had my notes so although I should have questioned why my case had been moved to her, I didn’t. I think I was in shock as I wasn’t expecting the call. I assume it’s because of the pandemic.

It is a queer thing though. I get frightened when they move me about. I worry that they’ve lost me or will get me muddled with someone else. I have previously complained about the A & E dept. at Watford General denying that they had a Thoracic medicine dept.

The staff told me it was all in my head as there was no record of my chest condition in my notes and no respiratory dept. at their hospital in April 2019. I digress. All this stuff does not help. Unfortunately, there is another Samantha Harris with my date of birth living in my town. Poor woman, we actually worked at the same David Lloyd gym once. I wonder if she suffers from being confused with me.

Doctor Thingamabob was friendly but didn’t do the basics. She didn’t ask after my health or current medication. It has been one year since I last saw the service. Where did she get her information on me from? Her main interest seemed to be to get me to stop taking HRT.

A lot happens in a year. Should Doctors be making decisions on old notes they have from ‘lord knows’ before calling the patient? They ought to know how bad the NHS computer system is at collating the information on one particular patient. They use it every day.

I told her I had already stopped taking HRT. It had been advised by the breast cancer clinic after getting breast pain diagnosed as cysts seen with breast scan taken at St Albans City Hospital in early 2019 – part of West Herts Hospitals NHS Trust – should be on my notes too…I’m not sure what she can see.

Dr Thingamabob was not going to listen to me…she continued to tell me that HRT makes my lung condition worse. I told her I’d stopped taking the hormones over ten months ago. I thought that she had finally accepted this when she asked me if I had any daughters. (YEP)

We spoke a little about my daughter’s lung issues although she never asked about my daughter’s gynae issues or I could I have told her she has polycystic ovaries. Digressing, sorry. But if this was her interest than surely this be an obvious path of questioning?

I brought her back to my case by questioning her about the three different diagnosis’s I had for my lungs over the years. I pointed out that docs said cysts in my lungs at BMI Harrow, but it was changed to Bullous Lungs at Watford then to Emphysema last year, as I told the consultant I’d started smoking.

Whilst on the phone she said that she was reviewing my CT scan of my lungs and said that it was cysts, and she would like me to have a blood test for LAM as that too can be make worse by HRT. I told her again I was no longer on HRT – I was getting a little annoyed at this obsession with HRT. We said goodbye to each other, and I put down the phone thinking ‘what was that?’.

I should point out usually my blood pressure and weight are taken by the clinic. These are obviously not able to be taken on the phone so she couldn’t see I am still losing weight. I still have the cough which I mentioned to Flip last year when I saw him. It is now very annoying and hard to go anywhere as everyone stares at me. Bloody covid19!

Being that I’ve had my cough since April 2019 it’s more than likely a ‘smokers cough’. It is a very embarrassing thing to have right now. It would be really nice to have a course of steroids or antibiotics to get rid, but it will never happen…or even better to be able to give up smoking without it hurting too much or making my MVP jump.

Oh, I’m very cynical. I’m thankful to have found the acetylcysteine and use it whenever the lungs are really congested. Thank you, Amazon International. I’m thankful for the mugwort which I SMOKE as well as drink as a tea. These things have genuinely helped me.

In my country it’s illegal to get acetylcysteine without NHS prescription and it is not licenced for use with lung conditions. It is not possible to buy steroids or antibiotics or antivirals from the chemist without a GP prescription. Many people look at our system and think it’s great. It’s not. It’s a denial of medical health products and being at the mercy of selfish doctors.

The consultation was pleasant. I mentioned to my daughter that the consultant was very interested in her lungs, more than mine as she still has a womb. Then I forgot it. At the beginning of this week I got a letter from the consultant headed up from West Herts Hospitals NHS Trust…not from St. Mary’s.

The letter tells my GP that she would like me to have this LAM test as I’m on HRT and it will be making my condition worse. She also put in a blood test form which requests the VEGF Ab Test and scrawls across it ‘send it out if needed’ as she doesn’t know if the hospital has the test facility.

There is something else which she has done that confused me. She writes, within the letter, that she has reviewed my CT abdomen scan and notes it is free of cysts on the kidneys…

As she didn’t do this (looking at the scan) on the phone to me, I’ve no idea which CT abdomen scan she is referring to. However, I’m pleased that she notified my GP of the absence. It seems unlikely that I have LAM because of this statement.

Being that she states, in the letter, that the LAM test is needed as it is ‘relevant because she is on HRT’, one has to wonder how relevant the test is because that I am NOT.

I have mental health issues. I’m finding it harder and harder to trust the medical services. There is no cure for LAM, and should the test be positive I would need to transfer to Nottingham to attend a LAM clinic – it says so in the letter. That is extremely far.

I’m very tired, fed up and in an increasing amount of pain with my groin and this fecking TVT mesh. Yep my chest does hurts, I’m air hungry constantly and I’m coughing. It doesn’t take a genius to know I’ve got a bad set of lungs.

And, yes, I have had a cough for over a year and am I’m in so much pain that I cannot rest my arms against my torso and have been for over a decade this is not mentioned on any letter. It’s frustrating.

However, the NHS treatments have historically been different inhalers and contraptions for delivering medicine into the lungs. They tend to make it worse or have side effects which I cannot live with. I’m never sure what the medicines are supposed to do.

One crushing, swirling capsule gadget made my throat so sore I could barely speak (and I like to sing). Also, singing is good for the lungs. And to be encouraged. Yet, as there was no follow up to report on my usage of the medication, do they know this. How could they? It’s also such a waste.

I now have this part of the letter here which I will write word for word what she has put under diagnosis. This is a therapeutic process for me to decide whether I go for the LAM test.

Diagnosis:

  1. Previously labelled cystic lung disease with some upper cystic changes and overlap emphysema
  2. Ongoing smoker
  3. History of Ehlers Danlos syndrome – type 3 with persistent chest pains, breathlessness.
  4. On HRT (post-menopausal syndrome) but of concern if LAM present.
  5. Cyclical vomiting syndrome.

No mention of my groin issues with the TVT mesh or Stapled rectum operations…note this is very common in my communications with hospitals. They choose what they wish to note, ignore what they do not want to note, or what they are not interested in.

If she’d asked me, I could have told her I still cannot sit down comfortably and am on fentanyl pain patches and that these help with the ongoing rib/chest pain too. The night sweats are still very bad.

Which to me, makes any cohort study I may be included in, invalid as our notes are made up of bits of information not the whole story. What is relevant or not is only admissible if the doctor can see it or asks the patient what their symptoms are and lists them in the follow up letter.

Not listed, not suffering from…

It should be also be noted that I have a crossover type of EDS with classical features. My collagen is not normal. However, it is the persistent pain and breathlessness being listed under EDS rather than the lung condition which is curious.

EDS has dislocated my joints and been responsible for persistent pain in my feet, hands and joints generally since I was fifteen years old. I also have Gout in both big toes upon walking or movement.

Also, unknown, to this doctor, as she didn’t ask, I’ve not had an episode of Cyclical vomiting since I started a new medication called Cyclizine whenever the nausea starts. It’s been great. Almost six months. This was a GP intervention and has stopped the visits from the nurse completely.

It’s worrying isn’t it?

What kind of consultation is it when the doc is only interested in their agenda?

If anyone did actually read this far, thanks. Any advice appreciated.

In my heart of hearts, I don’t want the blood test, if I’m honest, – as I don’t see the point (and the hospital don’t do it so I would need to believe that WG would send it on somewhere). I assume I have to have the blood test at Watford General as there is no information in the letter regarding this.

I have my groin to deal with. Preferring to keep trips outside, drama and fuss at a minimum makes things easier for me and is helping me to cope…this isn’t helping, thinking I’ll have to travel hundreds of miles to see someone for an hour and then go again. I already have to travel hundreds of miles to see someone about the mesh removal.

However, I have mental health issues and trust is a massive factor in this. Am I being stupid?

I researched the doctor and I kid you not when I tell you she is listed at almost every hospital NHS and private hospital in the area as a respiratory consultant apart from at Watford General. Why did they tell me it was cancelled and then this doc call? Why was she so intent on making me come off HRT? Is this the way all consultations are going to go now?

Why didn’t she ask me how I was and what medication I was on now?

Do I go for the LAM test?

Will it go against me, for future treatment or consultations, if I don’t?

Thanks for reading.

Lumps – A Short, Self Obsessed, Article

In true me style, it took weeks to realise that I’ve been able to play my guitar for longer than usual. Being extremely happy to be playing again, I didn’t question it. Tending to go through life heavily sedated – my defence feels secure when I admit this.

I did, however, finally twig last week when I got to the end of a three minute song without having to take a break to massage the hand.  So, of course I got to thinking about how I could suddenly do this.

What have I done that is different? Self analysing is common when you are perceptually poorly, apparently it’s natural. To comfort myself, whilst thinking, my right hand went to my left hand to massage the nodules on my knuckles. I’ve been doing this to help with these ‘growths’ for around two years now, as per Rheumatologist’s instructions.

As I started the rhythmic, circular motions something was feeling unfamiliar. I was massaging my knuckles and they were unusually flat. No lumps. I did the cursory checks over the rest of my hands…to see if they had migrated (?) but they are definitely gone. I have waited a few days before announcing – just in case they returned, but I’m exceptionally pleased to say that the my lumps on my hands have gone!

Yay!!!!

Now, to the query of how. Or rather my theory as to how.

The most recent addition to my medical defence against my illnesses has been the introduction of a chemical called Acetylcysteine, also known as N-acetylcysteine or NAC. It was originally discovered in the 1970’s but I’d never heard of it. Apparently it was a big deal when they did discover it and many people across the world use it to aid health.

For myself, I’ve come across NAC by error and accident. Initially it was prescribed by my COPD nurse at my GP surgery. It took weeks for the chemist to obtain it, as he hadn’t come across it either. I picked up the effervescent tablets with the same nonchalance as I usually view my medication with – rare to find items which work I’ve become a cynic.

Usha (lovely nurse btw) intended to have the medication as she’d read, in a magazine, how helpful it had been for COPD patients suffering from bad absorption of nutrition and I had lost over two stone in weight which she could see from my health records.

It was only an accident because it is not licenced for use in the NHS for treatment of lung conditions. She wasn’t supposed to prescribe it to me (error) and then, on top of that, a GP okayed the script without realising (accident).

When I asked for a repeat of the wonderful script I was told the bad news. There had been an error that had resulted in the accidental prescription of a drug I wasn’t allowed.  So, I couldn’t have it again. The surgery apologised.  They gave me a medicine called carbocysteine but this sickly sweet alternative with added flavour does not work.

However, to imagine that I would just leave it, having now found something which made me feel better, was unrealistic. As NAC really had improved many things for me, I decided to find a private source and a quick search online saw me discovered how popular Acetylcysteine is and that it was available without prescription globally.

Thankfully many outlets do sell a form of NAC but none are effervescent type in the UK.  As I am unable tolerate capsules or tablets I searched a little further and found a Spanish supplier which has a similar dissoluble tablet, only this one is lemon flavoured – yuk – I prefer plain because of the chore of my stomach and bladder.

Mesh injured and citric acid is not a good combination. Vitimin C is citric acid and as such it triggers cystitis and over active bladder symptoms. However, all drugs have some sort of side effect. So with this in mind and determined to get something with active NAC within, I thought I would give it a try and purchased, off Amazon, anyway.

When it plopped through the letterbox onto the doormat, weeks later, I couldn’t get the canister open fast enough. First day was great, but immediately my bladder had kicked off. Within days, my kidneys were beginning to become painful and I knew the product was too much for my system.

I cut the dose from daily to once a week because of these side effects. Results are now good, my energy levels are much improved and so is my appetite. I am happy with this product – the one I buying via Amazon is called Aquilea Mucus. The added Vitamin C will be of benefit generally once the bladder mesh is removed (I’m awaiting this on NHS).

I’m sharing my experience of this product because I want to share, I’m not on a commission or anything like that. I have no agenda other than that of my experience to be shared.

Please do bare in mind this product was my only choice in a small market! I’ve just ordered enough to see me through Brexit. Just in case you guys suddenly decide to try it too and stocks get low in the UK.

I did my research and wiki sums it up quite well.

wiki says, “Acetylcysteine, also known as N-acetylcysteine, is a medication that is used to treat paracetamol overdose, and to loosen thick mucus in individuals with cystic fibrosis or chronic obstructive pulmonary disease. It can be taken intravenously, by mouth, or inhaled as a mist. Some people use it as a dietary supplement.”

So, NAC has many uses. It seems that different firms highlight the relevant beneficial areas to market their product. This can make it difficult to see the whole picture of what NAC is able to do for some people. Costs are pretty cheap compared to other drugs.

There are many articles on NAC so as I am not recommending and am just sharing my experience,  I’ll leave it to you to do the research if you want to try it for yourself or recommend it for someone you know.

My GP says it’s only licenced for paracetamol overdose in NHS and will not allow me this medication for COPD so I take it as a food supplement.

I’m not a doctor or medically trained in any way. My qualifications are mainly in electricity but I do have a keen interest in biology. I have the first hand experience of how things affect my body and I know that I feel better than I have for years regarding energy levels and tightness of chest.

The research calls NAC an non essential amino acid. Amino acids are essential for absorption from what I remember from biology so my COPD nurse is one of heroes now. Usha, the nurse, listened to me and helped me – ten years under a consultant at respiratory thoracic department at Watford General Hospital haven’t done as much.

…and the nodules, I call them ‘lumps’, that have disappeared from my hand?  They really have gone completely and the pain associated with them. I’m thinking that the cleansing processes of the Acetylcysteine on the body are just what my body needed. I couldn’t be happier with it.

So, far from being the usual ball’s up, the NHS’s error in prescription has benefited me. Which is nice. Being Brits we pay into our national healthcare system by paying our tax and insurance when we work, it’s nice to know it’s there when you need it.

It is unusual to be able to say something positive about England’s health system and I’m not sure this article is. I see the British spirit as making the best of a rubbish situation, as it could always be worse.

From handling my mental health issues, I know that positive outcomes are important to be recognised, regardless of how they come about.

Thanks for reading folks.

Have you had an error which benefited you in ways you didn’t imagine it would?