I started my last blog with the following lines:
It had seemed for some time now that I had been abandoned by all and sundry from the medical profession. My pain consultant told me he didn’t need to see me again. My physiotherapist told me there was no point seeing him again. Occupational health had said it was lovely to meet me and she hoped all would go well. Even my doctor had given out to me for making an appointment to see her instead of getting my prescriptions renewed through reception. All I was left with was my wonderful support worker, Sue, who for personal reasons hasn’t been in contact now for at least two months. It seems as if the medical profession were more than happy to dispose of me despite the fact that my health was far from healthy. It seemed that it was rather up to me to work out (or rather continue to work out) how to handle having M.E. My future was uncertain but it was certain that the medical profession had had enough of me. A very lonely and frightening reality.
I had felt that there was nobody left out there to help me. That even if there was, my access to them would now be restricted by medical professionals who no longer saw a reason to help and support me.
For a long time my doctor was very supportive of me, happy to listen to my concerns and make any necessary referrals. That time however, it seemed, had passed. My physiotherapist, not able to do traditional physio with me as he didn’t think my body could cope with it – had said goodbye. I had already done the job of both the Occupational Therapist and the Clinical Psychologist by quickly developing a good understanding of my illness and how to cope both practically, physically and emotionally.
It had begun to seem to me that if I had somehow been a less perfect patient, then they may indeed have seen a role for me in their lives. They could teach me how to get better. When that opportunity disappeared, there was no longer a role for me with them.
It is quite frightening, frustrating, aggravating and infuriating now to think that without my best friend’s friend, I could have remained ill for a very long time if not the rest of my life. Let us assume that the diagnosis my Rheumatologist made (that was referred to in my last blog) is the correct diagnosis. I have Dysfunctional Breathing Syndrome with secondary Fibromyalgia and not M.E. Yes, there is some concern over whether this is actually a correct diagnosis but for the moment let’s just assume it is. Assuming that it is, if it wasn’t for my best friend’s friend, this diagnosis would never have been made.
The reaching of this diagnosis had little if anything to actually do with my GP or indeed any of the primary medical professionals associated with my case. From the beginning, my doctor had seemed incapable of pointing me in the right direction for further medical support. All referrals made were based on my request, based on my own research.
My best friend, Sarah, has been very close friends from childhood with a wonderful nurse called Helen. Sarah, upon reading one of my blogs many months ago, discussed my case with Helen. Helen works for a pain clinic in London. Helen advised Sarah, to advise me to try and get a pain clinic appointment. She said she had seen many M.E. patients and it sounded like my symptoms fitted right in with what herself and the consultants she works with come across regularly.
On being referred to an M.E. specialist (he turned out to be an Infectious Disease specialist) who wanted little to do with me, I managed to convince him to at least include in his letter to my doctor that a referral to a pain clinic might be beneficial. He refused however to make the referral himself.
Luckily, my doctor upon receiving the letter did not object to the referral. I have previously written about how great the Pain Consultant, Dr Antrebus from Warwick Hospital was. He was the first medical professional to actively listen to my story and offer me genuine advice. He also referred me to the Rheumatologist though with no conviction that he would do anything other than confirm his diagnosis of M.E.
Again, let us imagine that the Rheumatologist is correct in his diagnosis of Dysfunctional Breathing Syndrome with secondary Fibromyalgia. Imagine therefore that Sarah did not meet with Helen soon after reading my blog or imagine that they did meet soon after but they had more important things to talk about. What might have happened to me?
All the medical professionals in my life had given up on me, wanting no more to do with me. I am left only with the shocking realisation that assuming this new diagnosis is correct, I may never have gotten better because the medical profession no longer knew or cared enough to keep trying to support me and look for new treatments.
Perhaps this is understandable given they are guided by the NICE (National Institute for Clinical Excellence) guidelines. M.E. guidelines, that modern research have proven to be on the whole inaccurate if not downright dangerous. If NICE however are refusing to revisit the guidelines for at least a further ten years, why should GPs and specialists think outside of the box when looking to treat a patient with an utterly life changing illness? It is perhaps understandable then that faced with a patient with an illness they rarely come across, they wouldn’t want to do extra research to ensure that their diagnosis and treatment suggestions were correct. Perhaps they feel there is no need to ensure that their diagnosis is correct and that there are no further underlying conditions.
To think that the very symptom that makes my Rheumatologist thinks more than anything else that I have this new diagnosis: my breathing – is the very symptom that my GP falsely insisted for the last 10 months was a panic attack. It frustrated me greatly that no matter what I did or said she was sure I struggled with my breathing because I was having a panic attack. Five minute GP appointments are of course the norm and perhaps faced with a patient struggling to breathe but with a clear lung x-ray (after my very first appointment) then it must be a panic attack. I can’t help but feel that if she had even once decided to query my breathing issues and hadn’t just dismissed me as a panicked then perhaps I would have been healthy months ago.
Again, let’s assume the new diagnosis is correct. Within 6 – 12 weeks of receiving specialist Respiratory Physiotherapy, I should be completely back to normal – incredibly unfit but normal. I reached crisis point November 17th, 2013. If my doctor had queried my breathing issues then, I could have seen a respiratory consultant and had physio within a week or two of that date (with my private health insurance). Let’s just assume that I took 12 weeks to return to complete normality – then I would have had my life back by mid-February at the latest, possibly even by the end of December.
Instead of this, I have not worked since November 17th and have been on half-pay since mid-May with no pay at all due November 17th next. My illness has not just been an emotional and physical drain on myself, my husband and our families but also a financial drain. In addition, my school has not had a Head of English since November last and have had to pay temporary staff to cover my teaching hours while I was on sick leave. At times my boss has let it slip (unintentionally), that this has put a considerable strain on the finances of a school, which (like all other schools) despite claims of ring-fenced educational funding, has had its budget dramatically cut.
Surveys suggest that roughly at least 25% of all M.E. patients are misdiagnosed. Surveys also suggest that those with M.E. diagnoses tend to be high achievers. With 250,000 current M.E. diagnoses in the UK, then it is possible that up to 63,000 of these are incorrect. That is 63,000 people – the size of Maidenhead or more than half the size of Colchester whose lives are permanently on hold because they have an incorrect diagnosis.
How much are these people worth to the UK economy?
If we assume that at least half of these people (31,000) are on the most basic benefits, then this could easily amount to £3360 per person per year. This is a total benefit spend of £104,160,000 a year. This is of course a figure that ignores whether they live in council housing or are on a higher rate of benefit. Now these people aren’t an example of benefit scroungers, people who could work but choose not to. These are people whose ill heath has disabled them to the extent that they can no longer work.
Imagine then that half of these 31,500 people who are on benefits, have actually got an illness that is curable then that potentially is a saving of £52,080,000 a year.
Again, this does not include any savings made by the NHS for no longer having to, at the very least, subsidise their prescriptions. Myself, I am on medication which should cost me just over £32 a month which is further subsidised through a pre-payment system to less than £10. Assuming once again that these 31,500 who are potentially curable are also on the pre-payment system then this is a cost of £693,000 to the NHS per year. This of course does not reflect the true cost of patients’ medications.
Ignore the financial costs and simply considerable the cost to this nation of the potential removal of 63,000 high achievers from the world. I am a damn good teacher: anything less than Outstanding lesson observations are shocking for me and highly unusual. Twice departments I have run have been considered Outstanding by Ofsted and my personal contribution to this status was on both occasions recognised as key. My potential permanent removal from the education system through a misdiagnosis not only would have a negative impact on my life and the lives of those I love but on the children I have not taught all year and all the future children I would not have taught. I am but one contributor to the greater benefit of society. There are at least 62,999 other M.E. patients who too may not be contributing what they should because of misdiagnosis.
It is for this reason that I am frightened, frustrated, aggravated and infuriated by the concept that if it wasn’t for my best friend happening to know a pain clinic nurse and they happening to have a conversation about me and her friend happening to mention that I might find a pain clinic useful, that I might have never gotten well. I might have lived forever within the bubble world of M.E. Slowly making progress and getting some of my life back but never quite understanding why those final steps towards full health were unachievable.
It is or this reason that I am frightened, frustrated, aggravated and infuriated by the concept that there may well be 62,999 more patients out there who may not have had the luck that I have had; they may not have had the knowledge that I was capable of gaining; and they may not have had the emotional support that I had from family and friends to keep on fighting.
How many lives are on hold because the medical profession is sick of us and don’t know where to go next? How many of us may never see a proper diagnosis because we are considered malingerers, panickers or annoying or some other form of medical neglect.
My husband has said time and time again that such anger is pointless – it will not change my past and it will not change my future. He says that there is no point fixating on the potential that if it wasn’t for luck I may never have been re-diagnosed (assuming of course my current diagnosis is correct). He is absolutely correct of course. Doesn’t stop it being a frightening, frustrating, aggravating and infuriating thought.