Doctor-Patient Relationship – What is Required and What Should Be Avoided

 

How many people with Severe ME have experienced harm and have deteriorated due to an admission into hospital or in another care setting?

 

 

Image by Greg Crowhurst

A personal story from someone with Severe ME who has declined and suffered at the hands of an ignorant medic who denied the seriousness of her Severe ME and pushed her beyond her physical capabilities
 

A person with Severe ME who is a member of the Severe ME community in Ireland has been bedbound for a number of years following a hospital admission. She has suffered not just the debilitating illness Severe Myalgic Encephalomyelitis (ME), but she has also suffered from medical neglect and has had a long-term relapse following a hospitalisation where she found herself at the hands of an ME-unaware medic who did a lot of harm by ignoring her profound symptoms and pushing her beyond her physical capabilities.

She has since been left without healthcare and services appropriate to her severity that could help towards her recovery as well as her current living situation.

She is representative of a wider problem in the Irish ME Community at large where people with Severe ME, including young children, have been left to sink or swim because nobody is coordinating the care ….. there is no single clinical lead taking responsibility for people with Severe ME… people with ME and Severe mostly fall between the cracks.

The following personal story is a compilation of feedback from the Severe ME patient over a couple of years, here is her harrowing story...

“I had an awful battle with my first consultant. I was brought in in an emergency, extremely ill from a flight from Europe. Storm Denis had started just after we landed. The air hostess had to give me oxygen to keep me going until we landed. I was in ICU for nearly 10 days in quarantine due to Influenza A and pneumonia in both lungs. I was lucky to be alive!

 

When I started to recover, my Severe ME response following exertion kicked in and I had several conscious seizures; they happen from time to time when my physical body has overdone it. I kick and jump, I spasm and arch and my hand can take off in all directions. I'm not fazed by it except it uses up so much energy and puts me in bed for weeks afterwards.

 

I warned the ICU staff it would likely happen again and advised them to just keep me warm and hydrated. Last thing I wanted was a crash team pumping God knows what into me to calm me down.

 

I had two episodes while there and told my consultant. He didn't believe me.

 

I told him that I would need a couple more days in the quiet of ICU just resting and then could move to a private room for another 5-7 days, and I could go home to self-care.

 

I gave my consultant the International Consensus Criteria (ICC) and lots of other paperwork and asked him to read them.

 

The day we got the all clear from quarantine, he assured me there was no bed downstairs so I could have that 24-hour rest in ICU.

 

Twenty mins later, after he had gone a nurse came up and said there was a room for me on the ward. She omitted to say it was a shared room.

 

I was put in a wheelchair and moved lock stock and barrel to a ward.....bright lights, lots of noise, people chattering, lift doors opening .... major overload after 10 days of complete silence.

 

Then horror of horrors, I was put in a 4-bed room with my bed being the one everyone had to pass to get to anywhere in the ward. It was the noisiest environment I had experienced in days. I was overwhelmed and so tired. People kept asking me questions.

 

Tea arrived. Then something changed. Someone with a perfume passed me by. I choked and started to cough. I coughed for 2 and a half hours before the night sister was finally called.

 

My husband arrived in and he had words with the night sister. I was eventually moved to a quiet 2-bed room where I coughed for a long time until I finally settled. I slept a little and felt really scared now of what was to happen next.

 

The Consultant arrived in the next morning wanting to know what all the drama was about.

 

I woke that morning unable to get out of bed, my hands and arms were shaking, and I was entirely wrecked. I told him he was a good respiratory doctor, but he knew nothing about ME or Severe ME. I wanted another doctor to take over my Severe ME care. He was taken aback.

 

Dr M came to see me that afternoon and started treating the spasms etc. It was some relief to have him there. However, the other guy was still in charge of my chest.

 

On Sunday morning I said to him that it was a pity he hadn't honoured my knowledge of my body (25 years living with ME & many with Severe ME) and scientific fact and that this last week of spasming and unnecessary suffering could have been avoided.

 

He told me it was a 'self-fulfilling prophesy' and that the paracetamol I take every 6 hours that stop my hands from spasming are just 'a placebo'!

 

When he left I called my nurse and officially signed all of my care to Dr M. I have got to stop now as I'm exhausted and am meant to be resting.

 

..........

 

I'm home 7 weeks this Fri. Early discharge as COVID was looming everywhere. Dr M did what he could in a few days, he gave me meds to stop the spasming which helped.

 

Since I came home I cannot walk at all. I shuffle with a zimmer frame but my feet don't lift. I have carers to wash me, help me to the commode and to sit me out for a few hours in a chair by the bed. I can do very little. I'm sleeping a lot. Seizures and spasms have returned. I have lots of other neurological symptoms I hadn't had before.

 

I'm due to see Dr M soon and please God he'll find some solutions for me.

 

It's a nightmare situation at the moment.

 

I'm 56, stuck in a room I cannot leave without help.

 

I cannot reach the bathroom. Bed baths and commode is my life.

 

I'm staying as positive as I can hoping this is a phase and it'll come right, and terrified to think of the alternatives.

 

My husband is exhausted as carers only come for an hour in the morning and 30 mins in mid-afternoon. I have to live in hope.

 

............

 

I slept for most of Saturday & Sunday, a little less yesterday and today. It was the quietest birthday I ever had. I have a close friend who came over. There were just five of us present with my son providing music. It was the most beautiful present I could have had! After, we had a lovely lunch and then I went off to sleep. We did the cake in the evening when I’d had a few hours sleep. Not everyone’s idea of a birthday party but perfect for me. It gave me a great lift as I’ve had no visitors at all in the 19 weeks I’m lying here.

 

I’m still not walking. I can stand for a few minutes holding on but not independently.

 

I have started LDN, had a bad reaction and have reduced the dose hugely. I’m also on Thybon (T3) gradually increasing the dose. I think I get a little energy sometimes but it’s like the firecrackers at Halloween, gone in a flash. However, I’m taking a little hope that it happens at all.

 

I still get occasional small seizures, but they don’t last long. I’m on meds for those so it’s only when I’m very tired. My hand or leg could take off shaking for 10 - 20 minutes and then stop.

 

I generally thank God that I’m in good enough form.

 

I have carers twice a day and poor hubby does the rest of the caring. Still waiting for my emergency needs based medical card! Every week, it’s going to be next week. Crazy situation!

 

It’s going to be a long haul to improve at all. Spoke with private O.T as Community one is waiting on medical card to visit. He reckons we’re going to have to adjust our entire lifestyle downstairs which will mean putting on an extension. I’m currently in the Conservatory.

 

There is no shower on the ground floor so I have had no shower since 20th March. Also, I have to use a commode as I can’t walk to the toilet off the conservatory.

 

Life has changed, changed utterly.

……….

 

I’m pretty wiped out at the moment. I’m still in bed 99% of the time. Caregivers wash me at the bedside, and I get to use a commode. That’s my 1% out of bed. I have had a continuous list of small complications that zap the small bit of energy I recover.

 

My legs can move, I can lift them up and down gently, but I cannot walk yet.

 

This is my gift from my hospital stay in February and March this year. A doctor didn’t believe M.E. is real and pushed me beyond my limits. 

20 weeks lying here, without a shower, and not knowing what’s around the corner.

 

Thank God I’m in good form, I have faith which is my rock like it’s never been before. I have a wonderful husband who will do anything to help me. I have nice, gentle caregivers who treat me with dignity. So it’s not all bad. I can feed myself. I can read a few pages of a book. I can write a few lines like this on iPad but not a lot else at the moment. I guess I would be classed as severe at the moment, but it could be so much worse. I have hope that sometime this year, I’ll take a few steps.

 

My wish is to enlighten every medic, nurse, caregiver, physio, occupational therapist, radiographer, and everyone who deals with folk with Severe M.E. of our needs, of how hard it is to explain that because you look ok, you’re not ok. That Severe M.E. is a serious condition that destroys lives, patients, and families.

 

If someone gives you an article to read to understand their health issue better, the decent thing to do is read it and believe it.

.........

It's now 14 months since I came out of hospital. During that time, I have been confined to bed for 22/24 hrs. I sit out on a recliner, but 2 hours still exhaust me. I have carers three times a day.

 

I have no shower downstairs. My bed is in the conservatory which is now my room. I have daily bedside washes which are mostly done by carers as I have not enough energy.

 

My hair is washed in a basin at my bedside table. I use a commode in the same room. We are currently speaking with an architect to see what changes need to be done to our home.

 

Initially, I thought recovery would take 6 months at most and then a slower pace of normal life. How wrong I was!

 

My feet refused to walk. I would stand briefly with a Zimmer and do basic movements to ensure my joints did not stiffen but that was all I could manage. A standing hoist is used to move me from bed to chair or commode.

 

I realised that when my system collapsed last year, there was something left missing as I started to recover slowly. Messages were not being relayed to one of my feet in particular. It had all motor movements, but it had lost the memory of what it had to do. I devised my own programme of sensitisation of my foot. I scratched it, I stroked it, I used soft and rough materials on it. I stood on water droplets, stood on different textures.

 

We (carer and I) tried rudimentary movements - high soldier step and push forward. Each little increment was paid for by exhaustion.

 

Now at the end of May, I can make about 3 full steps with the Zimmer and my carer holding the Zimmer tightly.

 

My foot is still very shaky about taking my weight as I move my other foot but it's gratifying to have got this far.

 

I reacted badly to LDN late last year, swelling up like the Michelin man. Finally, after 4 months of daily diuretics, then super diuretics, very painful massage and decaf green tea, most of the swelling is thankfully gone.

 

I try and stay in touch through social media on my iPad with family and friends. I join webinars or Zoom meetings on things that interest me with no picture so I can fall asleep if necessary.

 

In order to keep my spirits up and my personality as me, I have to have contact with life.

 

I have a perpetual thirst for learning so I know some days I use valuable energy listening or learning something new, but it keeps me me.

 

I cannot concentrate for more than two pages of a book. I fall asleep during the audio books. Can't tolerate T.V. or radio with lights and noise.

 

My husband takes over from the carers every day, organises food, the washing and the house etc. It's unsung heroes like him that no one heeds. He uses the time in the evening when the carers are here to catch up on work.

 

In spite of spending many days the same, there's always something happening. I don't know if I mentioned before that as I left hospital, they applied for an emergency medical card for me. It took 20 weeks to arrive! We had bought our own profile bed before I left hospital luckily.  The O.T supplied the hoist early on as it was impossible to get me safely out of bed for commode etc.

 

After the medical card arrived, I got a decent commode, a recliner chair, a bedtable, and a wheelchair. These made life much more manageable.

 

Being in bed in the middle of a pandemic means that aside from seeing the Consultant every few months, I am very much at the mercy of my GP. That's another story.

I have full body seizure/spasms where I'm wide awake but unable to control anything going on. Usually after overdoing it, getting cold or being emotionally exhausted. These can last 20 mins to 2.5 hrs. Lately I have finished in a state where my arms won't move no matter how much I will them. This can go on for some time. I can only wait until movement comes back itself. Quite surreal. I can still speak thank goodness and ask for drink with straw. I have my google echo dot set up to phone my husband on command. It works as long as my voice is strong enough.”

 ~ Person with Severe ME (Ireland)

 

 

“ Doctors must be honest and trustworthy, make clear the limits of their knowledge and make reasonable checks to make sure any information given is not misleading or any action harmful”

Severe Myalgic Encephalomyelitis (ME)

Image by Greg Crowhurst

 

 

The Reality of Severe ME in Ireland - there is no knowledge about Severe ME among Consultants/Specialists in Ireland

·       If a person with Severe ME is referred to a consultant, the common experiences are as with a GP, i.e., there is no knowledge of Severe ME and how to care for the patient.

·       Neurologists, Cardiologists and Rheumatologists etc. largely dismiss the aspects of Severe ME which sit within their specialities as they do not meet the threshold for intervention according to their clinical guidance. 

·       Without the involvement of a clinician who understands the complexity of Severe ME as it affects all systems and organs, the attempts of one speciality or another to address one aspect of a presentation or ‘a symptom’ can lead to further imbalance or a further experience of ‘nothing to see here’ and dismissal.

The HSE’s often stated response that people with Severe ME are given ‘symptom management’ can reasonably be stated to be an act of neglect. The ME Community is an unusual one as they have no HSE ‘Champion’ or even anyone with an interest in ME that the HSE can identify.

·       It is hard enough for those assigned to a disease specific Consultant or one knowledgeable about their illness to overcome the barriers living with disability provides.  Having Severe ME adds a further barrier and brings with it inequality, as many have no access to a consultant, and for those that do, there is no knowledge of the underlying pathophysiology which can be emphasised to support an application for disability supports and services.

·       Access to support in the home, care, adaptation grants etc all benefit hugely from the support of a consultant, but for most with Severe ME, this support is unavailable.

·       Consultant support for those who cannot leave their homes is absent.

·       Collectively, we have met only two Consultants who ‘speak the language’ of ME and have some grasp of the complexity of the disorder and the dreadful toll it takes on the life of the individual sufferer and their families. But they are not ME consultants and have other roles which takes from there potentially being a knowledgeable Severe ME Consultant available fulltime. With the numbers with ME it is not practical that we continue to do without HSE ME leads.

·       How many people with Severe ME avoid hospitals and acute services as they do not believe the investment of their energy and potential harms to attend or be admitted will pay any dividends?

·       How many people with Severe ME have experienced harm and have deteriorated due to a hospital admission?

·        Hospitals too often evidences a dismissive response from staff, a denial of the illness or even any awareness that it exists and denigration of the person with Severe ME is all too often a reported outcome.

More about the Reality of Severe ME in Ireland

-          There is no national policy on ME - In the absence of a clinical guideline on ME and a protocol for Severe ME, acute and community staff have no lead, nowhere to turn. It is recommended that a national guidance document for ME should be developed by the HSE to provide information and guidance regarding ME and Severe ME with information in relation to the care and support available through the HSE to sufferers. 

-          There is no recognised set of criteria used by the HSE - In the absence of clinical criteria on ME and Severe ME, acute and community staff have no lead, nowhere to turn. We have recommended several times that the HSE adopt robust criteria such as the International Consensus Criteria and Primer for Medical Professionals.

-          There is no training in Med Schools.

-          There is no education among professionals.

-           There is no qualitative and quantitative data collected by the HSE to understand the complexity of the current situation re ME and Severe ME.
 

When will the HSE & Government become sufficiently aware of the harm being done to adults, and to children across all severities, but in particular to those with Severe ME, and harm to families across the country who are suffering due to the lack of knowledge of ME and Severe ME? Until there is an objective framework of standards, based on a sound and quality evidence base, there can be no accountability.

How can the HSE hope to address a situation if it does not know what the territory is?

·       Severe or Very Severe or Profound ME can be a very frightening illness, not only for the family and carers of the severely ill patient, but also for doctors who are unlikely to have any previous experience of these most severe presentations.

 

·   

·       People with ME, especially those with Severe/Very Severe/Profound ME, are often excluded from medical care because they cannot come to a clinic because they struggle to get out of bed or cannot move at all. It is particularly important that GPs pay attention to these people and make themselves available to visit them at home.

 

·       People with Very Severe/Profound ME are barely alive and can completely deteriorate from complications when their condition is neglected or badly managed by ill-informed ME-unaware doctors.

     Doctor-Patient Relationship – What is Required and What Should Be Avoided  

Acknowledge the serious and severe physical illness underlying the person’s symptom experience.

·        Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction.

·        Honour what the person says regarding their physical and cognitive needs.

 

·        Listen to the person and only interact at the correct time in the correct way.

 

·        Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, motion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just perceived.

 

·       Understand and comprehend that the person with Severe ME is not experiencing the world the same way as a well person and cannot fit into the demands and obligations imposed on them by others, easily or at all.

 

·        Maintain a flexible, knowledgeable, sensitive, compassionate, non-judgmental, person-centred rather than goal -oriented approach at all times.  

 

·        Be aware of the after impact of any interaction; something once achieved cannot necessarily be achieved or tolerated again or regularly or increased.

 

·        Recognise the irrelevance, unhelpful and dangerous nature of a psychosocial response and interpretation of Severe ME, a physical disease. A biomedical response and care pathway is essential.

 

·        It is vital to ensure that you never put any overt or covert pressure, demand or expectation to improve, upon the person with Severe ME, nor any underlying belief that is in opposition to the truth and severity of the disease and very real lack of valid treatment and cure.

 

·        ME is not easy to understand, help people around you to understand it!

 

·        ME is misrepresented as Chronic Fatigue or worse still as a psychological illness; make sure you represent it as a physiological neurological disease!

 

·        ME is a complex disease where the most severely affected are the most hidden and misunderstood, make sure you speak the truth for them and call out any medic who does not recognise that!

 

·        Know that the person you care for has a physical disease, one that most likely is not getting the medical support it needs. Everyone deserves correct medical support and excellent care!

 

·        Adhere to a strictly defined definition of ME, e.g., as per The International Consensus Criteria & Primer

 

·       Informed specialist help should be available for very severe cases. 

     Specialist services should also be prepared to see patients in their homes when it is necessary.

 

·        The most important thing the GP can do to keep supporting a patient is to proactively make contact with patients who may be unable to come to the surgery. Even if it's as much as a phone call every few months ideally a home visit should take place.

 

·        The GP should keep regular reports, keep an account of how the condition is affecting the patient, be aware of new symptomatic relief the patient could try. Even just documenting how the patient is functionally impacted by Severe ME both cognitively and physically is so important.

 

·        The struggle to access supports is just monumental and will make people's health worse so it is a question of actually preventing deterioration in health.

 

·        Patients at the more severe end of the spectrum of ME need all the support they are entitled to, particularly the benefits they are entitled to from the state, and its incumbent on the GP in particular to see that these benefits are suitably applied for with appropriately supportive documents.

 

·        The GP should actually be arranging for appropriate nursing care for such patients.

 

·        The most important thing is that the GP accepts responsibility for the patient, believes in the patient, takes on a personal role of continuity of care and regards the patient as his or her special patient for the duration.

 

Many thanks to the generous person with Severe ME for using your precious energy to tell your story, and to all in the Severe ME community who provide evidence of current practices in healthcare for those with Severe ME