Tag Archive | NHS

They’re Civilians! Civilians with Partical Weapons!

Apologies for the rather long hiatus in posting. Life as a full time (mental health) carer has been very taxing indeed, and I have found that my life and ‘free’ time has no longer been my own and, when I have had free time, I have been too exhausted to use it productively.

There have been lots of things going on, and there are lots of things I could post about but I will have to think about what and how much to share, why I’m writing in the first place and who my audience might be.

Since the Autumn I have also been battling with the NHS system to get to the bottom of my health issues. I now have an official Consultant-led confirmation of the diagnosis of ME, although disappointingly that doesn’t seem to help much – the general gist of things is that they can’t really do anything very much to help me. But I have seen a neurologist and will be referred back to the Pain Clinic apart from other things.

Additionally, my GP has been looking for evidence of Cushing’s Disease. It is considered a ‘rare’ disease, but it is on the list of endocrine disorders that should be ruled out before diagnosing either Fibromyalgia or ME as well as Adrenal Fatigue/ Exhaustion. It’s actually in a way rather the opposite of Adrenal Exhaustion since AE is a lack of adrenal hormones (the adrenals are exhausted) whereas Cushing’s is an excess of adrenal hormones – in particular, cortisol, which may be caused either by overuse of steroid medicines or the presence of a pituitary or adrenal tumour.

After various stages of testing, I have an appointment for a kidney scan (primarily to find out why my blood pressure is so enormously high and resistant to meds), and I’m waiting for the results of a new MRI. My GP said that, even though my cortisol levels appear normal so far, if there is no mass on my kidneys she will order an adrenal scan as there is obviously something not quite right. So no results yet but I feel as though I’m making (slow) progress at last thanks to my lovely GP who is the first to take me seriously and keep on testing until we find the truth.

That’s all for now. I do plan to come back to blogging. If you’re reading, please let me know. If it’s only for me I may still post as I find it therapeutic. Talking of therapy, my therapy of choice is still Star Trek. Top marks to any Trekkie who is able to identify the episode – I’ll give you a clue, it’s from Star Trek Voyager – from which the title of this post is named. (I used it as I’m in the middle of an upsetting episode in real life, that has me confused and questioning everything I thought I knew, but that is for another day.)

LLAP

Budget Healthcare

I know that we are supremely blessed out of all the world to have a publicly funded healthcare system. I am extremely grateful for it. In the case of my son, it saved his life… but only after almost taking it through misdiagnosis and negligence (see the page above on Type 1 Diabetes).

I don’t know whether it is the same across the board or whether my family and I have been particularly unlucky with bad and lazy doctors, but I could recount a catalogue of poor care and misdiagnosis. In fact, I think I will (indulge me):

  • When I was 12, I was knocked off my bike in a hit and run incident, causing a head injury and concussion (and actually who knows what else, as despite a litany of symptoms after this I have had no follow-up?) There was no room on the children’s ward, so I was placed in a single room off the men’s geriatric ward. I was allowed no visitors except at the ward’s very limited visiting times. I didn’t even receive nursing from the children’s ward. So to put it mildly, a horrible experience all round. (Incidentally, the police never investigated the hit and run either, so some guy who probably thought he killed a child – he didn’t stop to check – was just left to carry on with his life without so much as a caution.)
  • When I was 17, I went to the doctor reporting abdominal pain and a year of missed periods. This doctor had already missed my brother’s Crohn’s for more than ten years so I had armed myself with information. I suggested that I thought I might have ovarian cysts, so she sent me for a scan which confirmed my diagnosis, but I was told they were best left alone. I was diagnosed with Poly-cystic ovary syndrome (PCOS) but not told. I did not find out about this diagnosis until another doctor happened to find it in my notes 25 years later, despite having multiple miscarriages in the intervening period.
  • When I was 22, I had a debilitating throat infection with swollen glands which kept me off work for more than two weeks. The doctor refused to visit me. When I finally was well enough to go and see her, she told me it was ‘probably’ glandular fever but refused to write me a sick note for work. (Incidentally, I don’t think this was the first incidence of this illness, and I suspect it goes back to early childhood.) I remember getting in a lot of trouble for that!
  • In 2003 right after the birth of my fourth child, I seemed to have a recurrence of this illness which absolutely knocked me down with widespread pain, digestive troubles, and a host of other unexplained and apparently neurological symptoms. I can’t be sure whether or not it was the same thing or something different, as I was never tested for EBV (The Epstein-Barr Virus, which is the virus responsible for both glandular fever and tonsilitis.) I went to the doctor multiple times, only to be told that I was depressed! (what?!) Later, this bizarre misdiagnosis changed to indigestion (what?!) and IBS caused by stress (what?!) Lastly, she suggested Chronic Fatigue  (which seems quite bizarre to me as I never once mentioned fatigue as one of my core symptoms although it was present, it always seemed to me to be a secondary result of the illness, as is depression) but then told me she didn’t believe in it anyway and refused to diagnose it!! (what?!) Finally, after 13 years and several different opinions from different doctors, I finally got a diagnosis of so-called ‘ME/CFS’. A step in the right direction perhaps but not much help, and really on no basis at all.

Jackie commented yesterday on one of my previous posts on ME, drawing my attention  to some articles explaining the very fundamental differences between ME and CFS, and I will share them below. As I am sure I have mentioned before, the NHS has ignored the WHO’s determination that ME is a neurological illness, and instead has chosen – under the direction of a group of now largely discredited psychiatrists who like to believe that it is an imagined illness – to use their own ‘NICE’ guidelines which conflate ME with ‘Chronic Fatigue’.

CFS and ME Comparison Chart

CFS is Always a Misdiagnosis

ME v CFS – They’re Not the Same!

Reading through these important articles (and I recommend the Hummingbird Foundation as one of the few places where you will find reliable information about ME – see my health links to the right), I am struck by how easy it would have been to have sent me for a brain scan when I first got ill. Either it would have shown something and I could have received a correct diagnosis immediately, or it would have been clear that it wasn’t ME and further investigation needed to be undertaken to determine the true cause of the illness.

But the NHS does not routinely offer brain scans to people who present with ME-like symptoms. (In fact, I am still pushing for a scan relating to my head injury more than 30 years later because I strongly suspect pituitary damage, but I might as well be banging that head up against a big brick wall!)

To save a bit of money, the NHS lumps genuine ME together with unexplained CFS and recommends only a treatment which can severely damage people with genuine ME (although this may be alright for people with chronic fatigue that isn’t ME), with no regard whatsoever to the years of suffering and lives wasted. The same is true of people with clear Thyroid conversion issues, but whose TSH appears normal. (More to say on that another time.)

ME/ CFS/ Fibromyalgia (which may or may not be the same illness) used to be diagnosed by a process of exclusion. But when I went to the Rheumatologist and received the dubious new diagnosis of Fibromyalgia, he told me that this is no longer the policy in the NHS, but rather, a (mis)diagnosis is offered on the basis of what it ‘appears to be’. This is truly scandalous. So I was not tested for Rheumatoid Arthritis, Sjogren’s or Lupus, despite having an overwhelming list of symptoms that would warrant such testing.

When I went last week to my first meeting of the local Fibromyalgia support group, I was surprised to find a large number with multiple diagnoses including three with MS, and lo! When I looked up co-morbidities of Myalgia Encephalomyelitis, MS was listed as commonly occurring together with ME. But this is important – if you were once diagnosed with CFS but then later received a diagnosis of MS, CFS was a false diagnosis because the nature of CFS is unexplained fatigue – if it goes on to be explained, it ceases to be CFS. But if you had a diagnosis of ME and then later received a diagnosis of MS, they could be legitimately occurring together.

But this can only be determined by proper testing, which is not generally available on the NHS. The only choices available to an NHS patient are to fight and battle and shout and scream in the hope of getting the help you need (and risk getting labeled as a trouble-maker, or worse) or to get private testing done. Most people of course do not have that option open to them.

When my Dad was rushed into hospital by ambulance with heart failure, the front-line care appeared absolutely top-notch. We were all very impressed. But after being bullied into having an operation that he wasn’t strong enough to survive (for what nefarious reason I cannot determine), and having had a stroke on the table which caused a severe personality change, depression and emotional lability which made his last year hell, he was never offered any kind of aftercare. Physiotherapy was not even suggested until the week before he died, when of course it was far too late. Front-line care may be impressive, but the reality for the day-to-day care of living with chronic illness can only be described as poor in the extreme.

I don’t knock the NHS because I hate it. I love it, and I want it to continue and to improve, and I can only think that it has been mismanaged the way that it has for the express purpose of dismantling it and selling it off. I wish I knew what could be done to reverse the trend. But I think that patients can and must speak up when they receive poor care and demand better.

Felix qui potuit rerum cognoscere causas

The fact that I am up (still up) at 4:25 am, playing with my blog and updating my Goodreads/ Shelfari/ LibraryThing accounts worries me somewhat. Yes, I’m tired, but I’m also so horribly buzzy that I know there is very little point in me going to lie down, because I would not be likely to sleep. In fact, sleep has been elusive for some time.

Adrenal rushes have always been part of my illness. During my succession of dreadful GPs I have been told that a) I was imagining them, b) that my adrenaline and cortisol appears normal and c) I must have an anxiety disorder. Well pah. I lost faith in the NHS a long time ago. I know that I have anxiety issues, but to be fair they didn’t start until after I became ill.

Adrenal fatigue/ dysfunction is a known symptom of ME as part of the overall autonomic nervous system dysfunction, but since the NHS are ill-equipped to correctly test for or treat such things, their default position is to insult us. Enough of that. When I can afford to, I will be getting some properly reliable tests done privately. What I will do after that is anyone’s guess. I’m not likely to ever be able to afford private care beyond the testing, so once I actually know what I am really dealing with, I will investigate affordable alternatives.

Anyway. What I wanted to mention is that this period of insomnia and frenetic activity is somewhat reminiscent of a Bi-polar high, or the ‘manic’ part of what used to be called Manic Depression. I do have Bi-polar tendencies, I am aware of this. My mother has Bi-polar Disorder, and although I don’t believe for a moment that I have Bi-polar myself, I do think I am slightly genetically vulnerable to changes in brain chemistry. I have had these occasional, mild highs before. Primarily, I have had them when taking a new medication – when I was on Amlopodine for high blood pressure, I experienced horrible racing thoughts and really unpleasant ‘mixed states’ – a feeling of intense depression and mania at the same time. The other thing that threw me for a total loop was St. John’s Wort, which I took for post-natal depression many years ago.

Thankfully I am not experiencing any of that this time. But I do feel very, very slightly ‘high’. And although there is a very crucial campaign by people with ME to ensure that the illness is not confused with mental illness (which I totally support, as I am quite, quite sure that the depression that comes with ME is not a cause or an explanation but rather a co-morbid result of suffering chronically and being treated so appallingly badly by the NHS, the media and society in general), this ‘high’ does strengthen my conviction that my particular illness has dysfunctional thyroid as an integral component, since hypo- and hyper- thyroid states can affect the brain, and in fact it is not unknown for people with dysfunctional thyroid (especially Hashimoto’s Thyroditis, which can swing from high to low) to be mis-diagnosed with Bipolar.

Yes, you have probably guessed it, I have been taking a supplement designed to help the Thyroid for the last week or so. I strongly suspect a causal link. Again, when I can afford to, I will be getting a complete thyroid panel done privately. But I’m feeling good (even allowing for the possible ‘mania’) about the feeling that I might be on the right track.

As you may have seen me mention, I posted in a very dark moment that if I didn’t get well in 2016, I would throw in the towel. I’m sure I wouldn’t. But I have a good feeling that 2016 might be the year for me. If I can get well – even by a small margin – my quality of life would improve beyond all recognition; I would be able to get out, clean my house, oh I don’t know – perhaps begin to make friends and build that ‘social network’ that 2015’s horoscope promised so faithlessly.

This is what I would like for 2016: glowing health, all our financial difficulties are over, find a better house, success in every area, and everything I touch turns to gold. Blessed beyond all imagining. “A good measure, pressed down, shaken together and running over, will be poured into your lap.” Yep. That’s what I’m looking for ideally.

And if it doesn’t happen quite like I want it to, I will try to find joy in all things, beauty and treasure in the darkness.

See? This is my happy place now.

Fob-off Diagnosis (again)

About a month ago I decided to move GP surgeries to the other one in town, because after three years of being told – without any adequate process of exclusion – that I have ME/cfs with Fibromyalgia (although I have never seen a rheumatologist to confirm that diagnosis) and that nothing could be done for me, I had decided that enough was enough.

The first GP I saw at the new surgery seemed very young and inexperienced, and in fact he had never heard of one of my diagnoses – PCOS – (Poly-cystic Ovary Sydrome), although it is a very common condition, and he actually had to look it up on his little screen!

I discussed with him that ME is an illness that should only ever be diagnosed through a process of exclusion and I believed that had not taken place. I suggested a number of things I wanted testing, including pernicious anaemia and hashimoto’s thyroiditis, both of which run in the family. He stated that “everybody thinks it’s thyroid, and it never is”, which did not inspire me with confidence at all.

The next GP I saw was a very popular lady, and for good reason. I have never encountered such a friendly, compassionate doctor who was so willing to co-operate. She immediately referred me to Neurology to rule out MS and to check for possible pituitary damage after a head injury some years ago, and to Rheumatology to rule out Rheumatoid Arthritis and Sjogren’s, and with the promise of more referrals to come. Sadly, this wonderful doctor went on maternity leave the next week, so I will not see her again for a year or more.

Today I saw a third GP, who I assume was a locum filling in for the maternity leave. I had prepared a very thorough and detailed letter explaining my case and some of the things I wanted testing and why. This GP read the letter and immediately picked it apart dismissively, becoming increasingly rude and patronising, telling me that I shouldn’t be resistant to the ME & Fibro diagnosis, and that I appeared to be “angry for some reason”. It felt as though I had gone back ten years. I left her office in tears.

I am actually too exhausted from crying to go into detail about what she said and how upset and angry I am. But I can tell you that I feel more desperate than I have ever felt.

The previous blood tests for TSH (computer) says “no” so without an intelligent operator, I am faced with a brick wall. She actually said to me “some conditions can’t be helped“.

How is that possibly acceptable?

And I really just don’t know where to turn.

Up-rising against DKA

My son was repeatedly mis-diagnosed over a period of several years (from age 3-9).

Approximately one year later (aged 10 in 2012) after moving house to a different health authority, my son was rushed into hospital severely dehydrated and in DKA – Diabetic keto-acidosis – a life-threatening complication of Type1 Diabetes that is wholly preventable if addressed quickly enough.

When my son got ill, I had not trusted my instinct as I had been repeatedly told it was not Diabetes.

I had been told that I was imagining his symptoms and that I was a hypochondriac mother. (Munchausens by proxy was strongly implied but not mentioned by name.) Our GP at the time told me not to come back, and that if I did they would have to deal with me!

This mistreatment devastated my confidence, and nearly cost my son his life.

It seems very unlikely indeed that I ‘imagined’ Diabetes and then he got it.

But a mother’s instinct was completely mocked and discounted.

He only just made it through the night after diagnosis, but thankfully he made it through and recovered after a week in hospital.

I now strongly believe that my son’s Type1 developed slowly along the lines of LADA (LADA stands for Latent Auto-immune Diabetes in Adults, which is Slow Onset of Type1 Diabetes – atypical for children, I know, but not unheard of) and I now know that, although initial urine tests seemed to be negative, a blood test would have detected antibodies years before the full-blown disease manifested itself. Blood sugar could have been tested. Neither blood tests were done.

Far too many children are ending up in DKA after missed diagnosis or misdiagnosis of Type1 Diabetes. Far too many children are dying because DKA is missed and left untreated.

Here is a reminder of the typical ‘Four T’ symptoms of Type1 Diabetes:

• Toilet – needing to go to the toilet much more often
• Thinner – unexplained weight loss
• Tiredness – unusual tiredness
• Thirst – excessive thirst

And a couple of atypical symptoms:

• Tummy – stomach-ache after eating
• Thickened skin – this is an atypical symptom which I noticed only because my son’s skin was rougher than his siblings, but both of these symptoms have been mentioned by other families of children with Type1.

We only had two of the typical symptoms – toilet and thirst, so don’t wait until you see all the symptoms to act.

Above all, trust your instincts, educate yourself, and if you suspect Diabetes don’t allow yourself to be fobbed off by arrogant and uncaring doctors. Know your rights. Get a second opinion if necessary, and don’t stop fighting until you know your child is safe.

Annual Review

type1

On Friday we had a Paediatric Diabetes clinic appointment and Annual Review. It should have been in January, to give you an idea of how shambolically incompetent our current healthcare providers are at the outset.

Ds’s hba1c, the average measurement of blood sugar over the last three months, has risen since we have been on the pump from 7.3 to 8.3. We were told we weren’t doing well enough and that the pump probably wasn’t appropriate for us. I argued that we would do whatever it takes to keep it, since it has been utterly life-changing in a good way, to the same degree that suddenly having to inject insulin was life-changing in a bad way. The meeting was combative and left Ds distressed and in tears.

On Saturday morning I woke at 4am absolutely furious, because for 2 and a half years we have had the most appallingly poor and low level of care. I have wanted to transfer out of this health authority; the only reason we have stayed is that our pump of choice is not supported at any other local hospitals as far as we know.

A brief overview of the ‘care’ we have received so far:

  • We were released from hospital without enough test strips to cover the weekend, and we were told by our PDSN to inject insulin without testing! On the advice of the national parents group, we went back to the hospital who were happy to supply us with extra strips.
  • Our PDSN routinely ignores calls, texts and emails. He is currently on long-term medical leave, but did not bother to let us know.
  • His inbox is supposedly going to the new additional PDSN but we didn’t hear from her either. In fact, she has been in the practice for over 6 months but we were not given her number until Friday. Either the calls are not being forwarded, or she also routinely ignores them, as we have not been able to get hold of her through his number, nor has she bothered to get back to us.
  • After the initial week of visits, we were left completely to our own devices, and were left to cope for 6 months without any lantus (it turned out we were injecting it wrongly, but we had to discover it for ourselves). Controlling the blood sugar during that time involved 2-hourly bolus injections day and night. But we had no help, visits or advice from the PDSN. The Consultant, during this time, suggested it was due to insulin resistance and did nothing to investigate or help us.
  • Despite the above, we managed at that time to keep the hba1c to 7.3. In fact we were originally refused a pump because our control was ‘too good’!!

Overall, I have been disgusted with the absolutely total lack of service, lack of contact, lack of help and lack of empathy.

It really isn’t acceptable for a child to leave the clinic in tears, angry, upset and distressed, frightened that he will have his pump (which makes life worth living as far as he is concerned) taken away.

We work bloody hard, and to my mind, we should be congratulated and our dedication should be acknowledged. Instead, the consultant is patronising and mocking. He dislikes our lifestyle and philosophy, the fact that we homeschool, and takes every opportunity to criticise. He told us on Friday that we should consider school now because Ds ‘obviously’ isn’t getting enough exercise (he has put on weight since the last appointment). I know, however, from conversations on the parents list and with other parents I know personally that the biggest complaint parents have is how badly the schools care for and manage their children’s blood sugar. Only last week we were told a story of a child who had refused to go on a school trip to Germany because she did not feel confident about their care. The only other 2 children with Diabetes who went on the trip ended up in hospital with Diabetic Ketoacidosis.

School would not be helpful in our case for a number of reasons that I won’t go into here, but suffice to say that the consultant’s tone added to Ds’ distress and fear. It was completely unwarranted and unhelpful.

It really makes my blood boil that they are threatening to take the pump away. If we had had an adequate level of help, I am sure that we would have had much better results.

Interestingly, on the way out, we met the family with whom we started the pump trial. They told us that they are having EXACTLY the same issues. Their hba1c has gone up, they are finding it hard to manage, and control is more elusive than it was on injections, but the benefits for the child are immeasurable and they don’t want to give it up. Needless to say, they also have the same issues with the PDSN.

There is no doubt that using a pump is much more complicated that injections. Leaving us on our own to figure it out is absolutely ridiculous. Threatening to punish us because we haven’t managed to figure it out on our own is unbelievable.

So at this point, depending on whether and where we can transfer and still keep our pump, we have every intention of transferring out of our current health authority. Hopefully, this pattern of incompetence, apathy and punitive, unhelpful attitude is not prevalent throughout the country.

ME: An Alternative View

The following website belongs to a friend of mine, who has an alternative and controversial view on what ME really is:

http://aboutmy.me/

I think that in my case, this probably applies, and I am working on the basis that thyroid and adrenal issues have not been adequately or thoroughly investigated by my doctors.

But I think that the thyroid and adrenal connection is only one part of the puzzle – it doesn’t fit the profiles of the outbreaks of mass ME such as the Royal Free case, in which dozens of patients and nurses came down with the same illness.

But it is definitely an issue that must be properly investigated before ME can be legitimately diagnosed.