Tools to help make hospital admission, or other care setting, & any procedures easier for people with Severe ME
Included: Personal Care Plan, Care Sheet, 'My Needs' Template, and more
When it is absolutely necessary for someone to attend hospital it’s very important that the patient arrives to hospital or other care setting equipped with a Personal Care Plan and other useful tools that will inform medics of the difficulties the person will have with such an admission, and to warn of the other difficulties that might come about if the person is not handled appropriately.
Receiving care in a hospital setting is not easy, straightforward, nor is it necessarily obvious as to how and when to interact safely and in the best way for the person with Severe ME.
Care Setting Tools
- Personal Care Plan
- My Needs Statement
- Consent To Treatment Statement & Form
- Creating an ME Accessible Healthcare Setting - Information Sheet for Doctors and other Healthcare Staff
Other useful Tools
- International Consensus Primer (ICP)
- DePaul Symptom & Severity, and PEM Questionnaire
- Bells Disability Scale
- Functional Ability Scale
- Educational Film - ‘Hospital Admission’
- Care Sheets
More useful Tools
- Emergency Room Info Sheet
- Letter to a hospital or doctor/consultant’s office to avoid a possible psych referral/ward stay
- Anesthesia Info for ME Patient
- AHRQ Addendum 2016 Conclusion
- ME Research Extracts and Videos about ME
- Prevention of Problems Due to Bed Rest & Prevention Information
- The Gurney Guide for Severe ME Transportation
- Creating an ME Accessible Healthcare Setting Information Sheet by MEAI
- Personal Care Plan
· would outline the severe ME patient’s illness and needs,
· would outline the difficulties the patient has being in the unfamiliar environment of a hospital where there are many potential ‘dangers’ to their health,
· would warn medics of the other difficulties that might come about,
· would be an individual file on each patient put together by the patient and/or carer, together with information added from the patient’s primary carer and the specialist consultants the patient attends,
· would include strict protocols to make arrival, admission, stay, and discharge, as well as medical assessments and procedures as easy as possible on the person with Severe ME,
· would go some way to help prevent relapse, paralysis, and other horrific symptoms,
· would be different and personal to the individual patient's needs.
The Sample Personal Care Plan can be copied/downloaded/printed and edited to suit you or the person with ME in your care.
Organising it takes time, and it is important to remember to carry the care plan file for any hospital admission including to ED (A&E).
Sample personal Care Plan here
Tip: After drawing up a Personal Care Plan document it would be worthwhile having the document signed off by a hospital or doctor so that it has greater currency, i.e. certifying the document.
Based on the HSE’s 'National Guidelines on Accessible Health & Social Care Services' (2014) link here, the 'My Needs Statement' template can be edited to suit you and used during a hospital admission etc when faced with the problem of how to explain ME & ‘My Needs’ to healthcare staff.
My Needs Statement Template: here
Consent to Treatment StatementDrs Code of Ethics and the HSE’s National Healthcare Charter make clear informed consent is required before any treatment/medication can be given.‘Why are you consenting to be seen by doctors who do not believe ME exists?You could make a Limitation of Consent statement in writing, sign it, get the signature witnessed, dated, copy to GP and any clinic to which you are referred and always take on the day of an appointment/surgery/other as well.Unless it is a doctor you know and trust who has satisfied you that he or she regards ME as a physical illness, you could start every consultation by asking them if they have read it, and agree, and that they confirm they will see you and treat you in accordance with it.End of gaslighting, end of harmful practices.The magic words are ‘I do not consent ‘ ie to being seen or treated by any doctor or health professional who does not regard ME (or my symptoms diagnosed on x date by doc y as ME) as a physical, neurological disease with physical origins.I do not consent to being seen by …. who regards ME as psychosomatic, psychological, psychiatric, MUS, a somatisation disorder or FND or similar.’If they do not comply they are working without your consent.Complete the document to suit you, then sign, print name, date and ask someone to witness your signature by signing, printing their name and adding their address or job.There are two further options, if you are concerned that at some point in the future if you become Very Severe a doctor may try to get you sectioned in a psychiatric ward.In that case you might want your doctor to sign to say that he regards you as competent to make decisions about your medical care, and you can add that this is to remain in your notes to stand in future until or unless you revoke it in writing.The name and address of a solicitor is useful in case of questions, but you could simply ask your solicitor to witness your signature.Then copy document to surgery and clinics and keep one in your own file to take with you if you go into hospital.The Consent to Treatment Statement may be adapted for personal use.Consent to Treatment Form & GuidanceThe article via link below by Valerie Eliot Smith provides a useful Consent Form template but it needs to be adapted for the HSE & Irish health services.The HSE has a Consent Policy so the template Consent Form can be revised with reference to that policy.The useful template is included below for you if you have an immediate need but it needs:a) Irish own clinical guidance reflecting Irish health services and experiencesb) Irish Limitation of Consent forms which reference HSE, Children’s Hospital Ireland and other Voluntary Hospital Group consent policies.It is a useful starter for you if you need protection urgently.Limitation of Consent to Treatment Form template offers an example of how to communicate concerns about being forced into treatment by medics who are not familiar with ME.
People with Myalgic Encephalomyelitis (ME) have a limited amount of energy and suffer from a post exertional response, i.e., PENE. Helping them conserve their energy and providing an ME- friendly environment will reduce the impact of attending essential medical appointments. See MEAI info sheet with tips to aid a person with ME attend their medical appointment/hospital: here
'It should not take this amount of effort for us to protect ourselves from inappropriate management & care by staff who are ignorant of the care required by someone with ME.'
Other useful Tools
- International Consensus Primer 2012
The International Consensus Primer (ICP) was written in 2012 following publication of the International Consensus Criteria (ICC) in 2011 to provide clinicians a one-stop, user-friendly reference for ME. It includes a concise summary of current pathophysiological findings upon which the ICC are based.
A comprehensive clinical assessment and diagnostic worksheet enables clear and consistent diagnosis of adult and paediatric patients world-wide.
The treatment and management guidelines offer a blueprint for a personalized, holistic approach to patient care, and include non-pharmaceutical and pharmaceutical suggestions.
Patient self-help strategies provide recommendations for energy conservation, diet, and more.
Educational considerations for children are also included. See the ICP here
- The DePaul Symptom & Severity, & PEM Questionnaires
DSQ2 Symptom & Severity Questionnaire here
The DePaul Post-Exertional Malaise Questionnaire (DPEMQ) here
All De Paul questionnaire tools available here including Paediatric Parent & Child Forms
- Bells Severity Scale
A good scale that could be used along with the categories Mild, Moderate, Severe, Very Severe, Profound, to determine near exact range, is the Bell's Disability Scale. Different people suffer in different ways but the scale gives an idea of the level of disability. It may be the case that it doesn't reflect your severity exactly but it is a useful tool for some patients to get across the extent of their ME severity to medics & others. See the scale via link to blog post
A functional ability scale is an important tool to help you work out where you are with your ME severity, we include the one from Action for ME here
- Educational Film - Hospital Admission
A must-see short film for all medics and especially for those who have patients at the more severe end of the spectrum of ME. A must see for physicians accepting the responsibility for these patients and a must see for carers confronting the decision as to whether the patient in their care needs to go to hospital and, if so, how best to manage it.
We hope that this film will challenge professional’s practice, attitudes, and beliefs about people with Very Severe/Profound ME who are suffering unimaginably with little recognition or helpful input.
See third film ‘Hospital Admission’ via link.
Supporting Someone with Severe ME Care Sheets by Greg CrowhurstThese Care Sheets could be used along with a Personal Care Plan for any healthcare admission.The Care Sheets would highlight the main symptoms the person with Severe/Very Severe/Profound ME has and would guide a carer or a medical person in hospital and elsewhere to know what to expect.
- Emergency Room Information Sheet provided by ME International (MEI) here
- Letter to a hospital or doctor/consultant’s office to avoid a possible psych referral/ward stay by ME International (MEI)
From ME International, here are a few questions you may consider asking a hospital or doctor’s office to avoid a possible psych referral/ward stay or to have ready as a response if your doctor during a hospital stay sends Psych medic to you for a chat. These questions are based on a letter originally used by Prof. Steven Lubet (school of Law, US) in a letter to Hennepin Healthcare:
Does [Institution Name] have written guideline, procedures, or protocols regarding the referral of patients for involuntary psychiatric commitment? If so, kindly provide me with a copy, or direct me to a website where they are accessible.
Have any [Institution Name] physicians or other professionals participated, within the past five years, in CME courses or in-service training regarding ME? If so, kindly provide me with any materials for such CME or training or direct me to a website where information is available.
Are there any physicians or other professionals on staff at [Institution Name] who specialize in ME? If so, kindly provide me with their names and contact information.
Here is Prof Lubet’s letter to Hennepin Healthcare as relayed by David Tuller via Virology Blog
- Anaesthesia Info for ME Patients from ME International (MEI) here
- Graded ExerciseTherapy (GET) warning handouts explaining the dangers of GET from the 25% ME Group entitled '25% ME Group stance on exercise' here
- Understanding the Dangers of Graded Exercise Therapy Video from Voices From The Shadows here
- Understanding the Dangers of Graded Exercise Therapy Video from Voices From The Shadows here
- Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: AHRQ Addendum 2016 Conclusion page 13
'Although future studies should refrain from using the Oxford (Sharpe, 1991) case definition as eligibility requirements, this early work provided a foundation on which future work can expand. This addendum has delineated differences in treatment effectiveness and harms according to case definitions, highlighting studies that used the Oxford (Sharpe, 1991) case definition and how these studies impacted our conclusions. Additionally, results of studies evaluating CBT have been considered independently from other counseling and behavioral therapies. Our sensitivity analysis would result in a downgrading of our strength of evidence on several outcomes which can be attributed to the decrease in power, dominance of one large trial, or lack of trials using criteria other than the Oxford (Sharpe, 1991) case definition for inclusion. Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS.'
- ME Research Extracts and Videos about ME Feb 2022
It takes time to build a personal healthcare file for a hospital admission/other care setting. The above is not a limited set of options to include but is a good solid set to have. The file can be added to in time.
Finding non-urgent transportation on a gurney (or stretcher) for a bed-bound person is not just challenging, sometimes it seems impossible.
ME patients severely affected can be house-bound or even bedbound for weeks or longer. Very severely affected patients experience profound weakness, almost constant pain, severe limitations to physical and mental activity, sensory hypersensitivity (light, touch, sound, smell, and certain foods), and hypersensitivity to medications.These patients cannot make office visits, and require in-home assistance and management plans specifically adjusted to their needs by a coordinated care team of providers. Caregivers, who provide ongoing management and the majority of care for patients, are subject to substantial stress and may need additional support. Not only are these patients already extremely sick but being bed-bound creates a whole new set of health issues.Prevention of Problems Due to Bed RestBlood ClotsA leg injury, leg surgery, or bed rest may prevent people from using their legs. When the legs are not being used, blood moves more slowly from the leg veins to the heart. Blood clots are more likely to form in this slow-moving blood. Blood clots in a leg (deep venous thrombosis) sometimes travel from the leg to the lungs and block a blood vessel there called pulmonary embolism. These clots can be life threatening.Pneumatic compression stockings may be used to prevent blood clots. Powered by an electric pump, these stockings repeatedly squeeze the calves and move blood into and through the veins.People at high risk of developing blood clots may be given an anticoagulant (such as heparin), injected under the skin of the abdomen or arm. Sometimes an anticoagulant pill is given by mouth. Anticoagulants help keep blood from clotting and are sometimes called "blood thinners."ConstipationWhen people stay in bed or are less active, stool (feces) moves more slowly through the intestine and rectum and out of the body. Thus, constipation is more likely to occur. Also, people staying in the hospital may be taking drugs (such as certain pain relievers) that cause constipation.To prevent constipation, staff members encourage people to drink plenty of fluids, and extra fiber is included as part of meals or as a supplement. Stool softeners or laxatives may be prescribed and may be continued after the person is discharged from the hospital.DepressionMany people who have a serious illness and who stay in bed for a long time become depressed. Having less contact with other people and feeling helpless may also contribute to depression.Pressure SoresStaying in one position in bed for a long time puts pressure on the areas of skin that touch the bed. The pressure cuts off the blood supply to those areas. If the blood supply is cut off too long, tissue breaks down, resulting in a pressure sore (also called pressure ulcer or bedsore). Pressure sores can begin to form in as few as 2 hours.Pressure sores are more likely to develop in people who* Are undernourished* Leak urine involuntarily (are incontinent)Being undernourished makes the skin thin, dry, inelastic, and more likely to tear or break. Being incontinent exposes the skin to urine, which softens it, causing it to break open.Pressure sores usually occur on the lower back, tailbone, heels, elbows, and hips. Pressure sores can be serious, leading to infection that spreads to the bloodstream.If a person has difficulty moving, staff members periodically change the person's position in bed to help prevent pressure sores from forming. The skin is inspected for any sign of pressure sores. Pads may be placed over parts of the body that are in contact with the bed, such as the heels, to protect them. If a person already has pressure sores, a special bed that uses air to redistribute pressure may be used so that pressure does not remain on any one area too long.Weak BonesWhen bones do not bear weight regularly (that is, when people do not spend enough time standing or walking), bones become weak and more prone to fractures.Weak muscles and stiff jointsWhen muscles are not used, they become weak. Staying in bed can make joints—muscles and the tissues around them (ligaments and tendons)—stiff. Over time, muscles can become permanently shortened, and stiff joints can become permanently bent—called a contracture.A vicious circle may result: People stay in bed because of a disorder or surgery, resulting in weak muscles and stiff joints, which make moving (including standing and walking) even more difficult.Prevention of Problems Due to Bed RestSteps to prevent problems related to bed rest may seem bothersome or too demanding, but they are necessary for a good recovery.Moving as soon and as much as possible can help prevent most problems, including constipation. People are encouraged to get out of bed as soon as they can. If people cannot get out of bed, they should sit up, move, or do exercises in bed. Flexing and relaxing muscles in bed can help keep muscles from weakening.For people who cannot exercise on their own, a physical therapist or another staff member moves their limbs for them. Furnishings, such as handrails, grab bars in the bathroom, raised toilet seats, low beds, and carpeting, can make movement easier.For children, hospitals frequently have playrooms to encourage activity and to prevent boredom or depression.
"Until there is a removal of psychiatry from first hand involvement in ME and a firm separation of the charities from psychiatric collusion and until a new separate biomedical pathway is set up for genuine ME sufferers and the medical profession becomes interested enough and genuinely concerned about this disease, there will continue to be confusion and no real hope of adequate and safe medical services for the most ill and seriously neglected neurological disease: MyalgicEncephalomyelitis."
~ Greg Crowhurst ~