For far too long disabled people have been excluded from participation in decision making structures at all levels. Disabled people want to have their views heard and valued to advance equality and social justice through active engagement in decision-making and rebalancing of power in the process.
Submission to the Joint Committee on Disability Matters from ME Advocates Ireland (MEAI)
Myalgic Encephalomyelitis (ME) is a complex disease involving profound dysregulation of the central nervous system and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Myalgic Encephalomyelitis (ME), a neurological illness as defined by WHO, is accepted as an illness which can lead to disability. The NASS now uses World Health Organisation codes as per ICD 10, Myalgic Encephalomyelitis (ME) is coded as G93.3. The previous NPSDD code was E014.
In Ireland there are an estimated 10,000 to 19,000i people living with ME.
Existing International guidelines, the International Consensus Criteriaii 2011, and the International Consensus Primeriii 2012, provide an insight into ME – for diagnosis and management strategies as well as research. The development of the International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and service providers, benefit both the physician and patient in the clinical setting, as well as the service provider in disability services settings.
The history of ME is one defined by controversy and scepticism because of a lack of education in medical schools, a lack of training among healthcare professionals and those in disability services, and because of the interference by the UK psychiatric influence with regards to their lack of biological disease recognition and the insistence on psychiatric interventions that cause harmiv.
As such the controversy surrounding ME interacts with the lived experience of the illness for individuals which is reliably defined by their inability to participate in life, to reach appropriate healthcare pathways, and to obtain services and supports.
Thanks to a growing number of exceptional scientists, ME medical experts and patient advocates who have researched and delved into the biological dysfunctions caused by ME, we are closer than ever to finding out the pathology of this illness. There are copious amounts of research which demonstrates that people with ME are harmed by exercise and therefore to provide this as a treatment is to compound that harm and possibly drive them into a situation of total and long-term severe disabilityv.
ME Advocates Ireland (MEAI) are a non-profit, volunteer advocacy group who are working to achieve recognition of ME in Ireland by promoting greater understanding and awareness of ME in the public, medical profession, and other related services.
Among the evidence ME Advocates Ireland (MEAI) wishes to put together to inform the Joint Committee on Disability Matters, is information from the lived experience of people with Myalgic Encephalomyelitis (ME) on what would promote or restrict their appropriate healthcare pathways, their independence, and participation in the community.
Independent living and community participation are broad concepts and for the purpose of this submission MEAI define these concepts as:
People with Myalgic Encephalomyelitis (ME) having access to
• a culture in which the concept of ME is understood
• a culture in which all in the HSE and associated services including Disability are required to manage those with ME in accordance with the standards specified in the National Healthcare Charter & ME Guidelines
• a culture in which the HSE and associated services are held to account for any failure to practise the newly adopted culture
So that People with Myalgic Encephalomyelitis (ME)
• are treated as an equal for healthcare
• have choice and control of the support and the equipment they need
• have choice about participation in the life of the community
• are integrated in the life of the community
The Lived Experiences of People with Disabilities Associated with ME
Myalgic Encephalomyelitis (ME) is accepted as an illness which can lead to disability. The HSE does not fulfil the commitment of the National Healthcare Chartervi with respect to persons living with ME as evidenced by the experience of those living with the condition who meet staff across the spectrum of health and disability services whose training either pre or post qualification does not include the condition. The HSE is not adequately fulfilling the standard of quality healthcare it has committed to in general, to individuals with ME. The lived experience of individuals indicates that there is no home or ownership of ME in the clinical operations of the HSE and Disability Services.
Myalgic Encephalomyelitis (ME) is an illness which can lead to disability. Evidence of lived experience of those with ME shows
• that there are considerable delays in response to applications for access to various supports including Welfare Benefits, Medical Card, Reassessments, Social Housing/HAP Supports, Home Help, Home Care Packages, Personal Assistants, Housing Adaption;
• that delays in accessing Home Help, Home Care Packages, Personal Assistants can often result in individuals between 18-65 years of age remaining in an acute hospital setting/nursing home for many days/weeks/months because they cannot access the supports they need to return home;
• that there are long delays in individuals’ receipt of Welfare payments following a favourable outcome post assessment, and not enough time given to prepare for an appeal process after being turned down;
• that it takes too long for provision of vital supports such as Home Care/PA services/Home Adaption to be made once a care needs assessment has deemed those supports necessary;
• that there is no one process for individuals to be assessed and to access Home Care/PA services because of huge regional variations. MEAI observes that currently home care services are costed and resourced primarily with older people over 65 in mind, and that the Home Care Package scheme is only intended to be used for younger people ‘occasionally’;
• that supports such as Home Care are often difficult to obtain and retain because of lack of resources and manpower, e.g. when the regular Carer/PA becomes ill or takes holiday leave there is no replacement, and requests for a replacement are ignored/delayed/turned down;
• that the assessors have little or no knowledge of ME;
• that the Carer/PA generally has little or no knowledge of ME when they initially take up a position of care with an individual with ME, which can cause difficulties for the individual because of things like multiple sensitivities to smells, noises, light, etc and other symptoms associated with the illness; and worse still MEAI have had reports where in some cases Carers/PAs have accused the individual with hidden disabilities of faking/exaggerating/making up their illness;
• that individuals have little say in the provision of home supports in general and more specifically when home supports become unavailable. Individuals have been blatantly ignored or fobbed off when they have requested to be part of their plan;
• that individuals with profound disabilities because of having Severe/Very Severe/Profound ME find Carer/PA absence utterly difficult. The evidence from those with lived experience of Severe/Very Severe /Profound ME points at a very fragile system of care with many reporting that there is no back up if the Carer/PA cancels a call. Individuals with Severe ME have reported missing vital medical appointments that they cannot attend without their absent PA., and sometimes go without food, heating, and medicines which they cannot access when left alone. Moreover, patients’ oftentimes repeated suggestions re substitute cover are ignored even though their disabilities associated with ME do not stop at the weekend, during holidays or when the home carer is ill. Despite the requirement by the Your Service Your Sayvii policy individuals who have begged to be listened to in situations like this have been made feel that they are a nuisance;
• that it is not easy to replace supports like the Carer/PA who does not get on with the individual to whom they have been assigned, or worse still who might be abusive towards the individual because of one reason or another, e.g. a case where a Carer does not believe the individual suffers from disability due to the hidden and fluctuating nature of the illness where, for example, the Carer may see the patient doing a task one day then bedbound the next day. Anecdotally, this type of problem is regularly reported to members of MEAI where individuals regularly endure gaslighting from the person assigned to care for their needs;
• that individuals with ME do not know how to apply for reassessment or for additional home support hours, how to appeal when turned down; do not know the response times - they are rarely provided with policies or written information re the disability care service they are under;
• that individuals who need more support because of a decline in health and disabilities are being denied additional hours without reassessment, and have in some cases been denied the reassessment;
• that there is a great deal of subjectivity in what a PHN tells an individual from the outset e.g. that when the individual asks for reassessment for additional home support hours, is told they would be losing hours not gaining them - individuals experience an antipathetic and worrisome statement like this without undertaking a new assessment;
• that experiences attending ED and hospital as well as other healthcare settings can be detrimental to the individual because of
- a lack of vital supports because of a lack of knowledge of ME and an unwillingness to learn and to take the patient seriously by most healthcare professionals, nurses, GPs, consultants/specialists and therapists who all have little or no knowledge of ME;
- delays in triage, assessments, and treatments while the person with ME educates healthcare personnel about ME;
- worsening of illness severity/relapse to individuals who suffer multiple sensitivities and other debilitating symptoms, e.g. noise, light, smell, chemical, drug and touch sensitivities, paralysis, dizziness, headaches, full body pain, weakness, numbness, post exertional deterioration, oxygen depletion, dystonia, variable BP and HR, severe cognitive dysfunction, no energy, inability to sit up or to be upright, difficulty swallowing/eating, etc;
- inappropriate management strategies forced on individuals with ME while in hospital, e.g. graded exercise;
- refusal to let the individual rest or lie in bed when it is necessary, and pushing them through their debilitating hidden symptoms to get them out of bed or to be active;
- referral to other ME-unaware consultants/specialists/therapists;
- subtle discrimination re the ME diagnosis as well as experience of medical gaslighting – medics do not understand the multi-systemic nature of ME and tend to demonstrate disapproval and treat patients as though symptoms of ME are all in the head. This has also been the case for children and young adults under Paediatrics;
- the negative impact on family life, on the family carer and on the person with ME, on their ability to access medical appointments, medication, treatments, and supports including home tutors in the case of children and young adults;
- the harms that have been reported by patients of all ages at the hands of ME-unaware healthcare staff and medics have caused relapse and worsening of severity that can last weeks/months/years;
• that the knowledge relating to research into ME, the physiological presentation and treatment and management options is held by those living with ME and not by an identifiable HSE or children's health expert or responsible group that can be approached for informed guidance and support, underpinned by biomedical research. There is negative impact on those who have limited function in their lives due to ME who are using that limited function to bring change to their lives, and to access supports and services. The impact of the poor knowledge among healthcare providers of ME on persons living with the condition despite a recent EU ruling is devastatingviii;
• that the under 65s with ME are not regarded as disabled and are not accepted for processing under Disability/Social Care services without a severe fight, a further barrier for the most severely affected;
• that individuals between 18- 65 years are processed under Older Persons, which they feel is discriminatory. Individuals do not know the criteria used to place them in the Older Persons group and wonder why they are not provided with information leaflets/electronic links which explain the service they are under and how it works. Individuals are frustrated at not being informed of what is available to them, and the limitations of what is available to them by being under the less flexible Older Person’s budget;
• that individuals who suffer disabilities having ME do not have their information included in the NPSDD now the NASS and do not know what the CHO’s policy is on inclusion to enable the HRB to collate statistics on disability in order to plan for services;
• that currently, the information from the CHO does not provide individuals with any autonomy nor is it a person-centred approach but very much a ‘do to’ service, where the person-centred approach the HSE speaks of is denied to them;
• that that data collected by the Department of Health, the NASS and the HSE in respect of those living with ME is not being used to support the decision-making process in respect of the supports and services needed in acute and community care nor to inform key performance indicators are accurate and representative of the 0.2 to 0.4% population prevalence of persons with the condition, in adults and children across all severities of mild, moderate, severe, very severe, and profound;
• that the HSE and Children's Health Ireland do not consistently use gold standard international diagnostic criteria, i.e. the International Consensus Criteria 2011, and the International Consensus Primer 2012 in adult and paediatric services to elicit a differential diagnosis of ME. The HSE and CHI have not currently instructed staff to follow a specific set of diagnostic criteria;
• that the HSE service or member of staff recommends inappropriate and harmful psychiatric therapies, i.e. graded exercise therapy and cognitive behavioural therapy, adapted to address ‘unhelpful illness beliefs’ as a non-standard form of CBT which denies the lived experience of the individual, as interventions for ME despite the cardinal feature of the illness PEM/PENEix; despite various studies which prove these interventions to be harmful to those with ME, and despite their removal from the HSE website, the CDC Guidelines on MEx xi and the 2016 addendum to AHQRxii and despite many reports from patients, patients orgs, medical experts and scientists/researchersxiii;
• that the reality of healthcare choices available to a person with Severe/Very Severe/Profound ME is even more stark than others, i.e. individuals who remain housebound/bedbound without medical input which they are too ill to access, and too open to misunderstanding and mistreatment because of the lack of knowledge of their profound disabilities and debilitating symptoms. It is also often the case that certain treatments are refused in the home despite there being a caring doctor who will do a house call when necessary, for example, the inability of getting a saline IV in the home to those with Severe ME. It has often been reported to MEAI that an individual who needs an IV is unable to get to a hospital;
• that a large percentage of adults with a disability live in consistent poverty because of financial difficulties due to job loss and the expense of medical appointments, tests and treatments, lack of access to loans and mortgages – this is linked to social exclusion and housing issues;
• that there are many other problems individuals with ME endure, especially those using supportive equipment. This is not an exhaustive list - accessing public transport; travelling abroad; using footpaths; parking in disabled bays; accessing public toilets; meeting barriers to access buildings, parks and other public and private areas; accessing education and employment; stress on relationships with family, friends, partners, employers, teachers; limitations on social life and hobbies. It is essential that the State and HSE are aware that people with disabilities associated with having ME struggle every day to access vital healthcare, supports, housing and education. This is not in line with the articles of the UNCRPD which Ireland ratified in 2018.
ME Advocates Ireland (MEAI) recommend improvements to disability supports and services for people with Myalgic Encephalomyelitis (ME) that ensures
R1. that the HSE and in particular Disability Services gain an understanding of the impact the poor knowledge of the condition and the disabilities associated with the condition among healthcare providers, including assessors, has had on the understanding of and provision for the level of disability of persons living with ME by the HSE and other public bodies;
R2. the adoption of an accepted internationally recognised set of diagnostic criteria which is sufficiently rigorous to diagnose and manage ME. MEAI advocate for the adoption of the International Consensus Criteria 2011, the 2012 Primer for Adults and the Paediatric Primer published by Rowe et al.
R3. the development of an ME policy to include
- Management Options and Management Pathways
- Training programmes for existing and new HSE personnel involved in all potential aspects of patient care e.g. acute, community, primary care, hospital, education, social workers, assessors, home carers, etc, so that they gain an understanding and knowledge of the condition and the disabilities associated with the condition;
R4. that the HSE and Disability Services acknowledge the data available on disability related to ME in view of a recent EU passing of the Resolution on additional funding for biomedical research on Myalgic Encephalomyelitisxiv;
R5. the appointment of a Consultant with extensive experience of innovative practice in ME who will guide and inform the development of the Disability Services in relation to ME practice in Ireland in line with the adopted International diagnostic criteria. Such practice to include informing all relevant groups of people responsible for ensuring that a person with ME is supported and managed in the most constructive and positive way possible, and following that direct the HSE to identify a paediatric and adult champion for ME in each hospital group and CHO;
R6. that the disability services identify individual healthcare staff with a particular interest in ME, and provide validated training for same;
R7. that the disability services recognise
- that the relationship between an individual and their home support can break down for one reason or another, and in that situation that the disability services recognise and respect the urgent request of an individual who seeks a replacement re that support
- an individual who suffers from severe disabilities who desperately needs to obtain cover when their home support is unavailable
- the difficulties individuals experience in the transition period getting to know the new home support and more importantly the need for that support to be up to date on matters relating to the individual’s ME and the disabilities associated with ME.
R8. that a person with the condition has his or her application for support(s) processed easily and promptly by the disability services in their CHO. Individuals would prefer a timely and appropriate assessment - a robust assessment which fully captures their abilities and disabilities, and whether they can fulfil ADLs and IADLs, for instance, when leaving the house is difficult, and at times when the individual is unable to attend medical appointments, shop, collect medication, do banking etc;
R9. (i) that a person with ME can easily obtain policies that provide information which explains on what grounds they can apply for assessment for home adaptation, for assessment and reassessment for Home Support hours and additional Home Support hours, and what that process is, including application and assessment, decision making processes and response times, as well as information on how to appeal if they have been refused any of the above;
R9. (ii) that individuals are provided with the HSE policy/guidance which identifies who the point of contact is in the HSE who
• explains the objective basis on which hours for people are allocated,
• supports them in the entire process, fully informing them about the process so they know an objective process was followed and to ensure it was not a subjective dismissal,
• ensures that an individual gets the hours they have been assessed for;
R9. (iii) that individuals would know where the information about a review process is, and what the review timeline is (CHO1 PSDS policy states a bi-annual review);
R9. (iv) that individuals are informed about which service their Home Support Hours have been allocated under, whether they are under Disability or under Older Persons, and that they be provided with the policy and the criteria used to place them under Disability or under Older Persons;
R9. (v) that individuals know what the CHO’s policy is on assigning a Social Worker to ensure the complexity of their case is understood and managed appropriately;
R10. (i) that they experience autonomy and a person-centred approach from the CHO instead of a ‘do to’ service and in place of the current approach that currently denies them a person centred approach;
R10. (ii) that individuals hope that their requests enable the CHO to look at:
- how it provides information about services and access to them;
- how it assigns people in the 18-65 group to Older Persons rather than to Disability
- how it supports people by providing appropriate information so that individuals can make informed decisions on their care, and have autonomy;
R11. that preferably those between 18-65 are processed under their age category under Disability, and that they are supplied with the Disability policy relevant to people between 18-65 living in the community, which explains the principles of inclusion and access to ADLs and IADLs the service provides, the assessment tool, etc;
R12. that they have their data included in the NPSDD now the NASS, and want to know what the CHO’s policy is on inclusion to enable the HRB to collate statistics on disability to plan for services;
R13. that there is provision made for reassessment when an individual seeks review because of deterioration and more profound disability to avoid subjectivity in what a PHN tells an individual from the outset and to avoid antipathetic statements without undertaking an assessment. And if there are CHO budget decisions being made, individuals assume there is a mechanism by which individual cases are looked at to see if a reduction in hours creates unacceptable difficulty;
R14. that the harmful recommendations of CBT and GET are removed as treatment options from all HSE and Disability guidelines;
R15. that those with Severe/Very Severe/Profound ME - individuals who remain housebound/bedbound without medical input because they are too ill to access healthcare, get home visits and the necessary treatments from an ME-aware local GP/Nurse who is prepared to work with them, and that the visiting medic is fully aware of the harms that can be inflicted on the individual if not handled appropriately because of the multiple sensitivities, etc associated with Severe/Very Severe/Profound ME. The State must ensure that housebound individuals have equal access to GP and other mainstream health services, including access to telehealth calls via phone/skype/zoom, etc;
R16. (i) that the cost of disability funding needs to be provided to address poverty, increase spending on Home Care packages, Home Helps and PA services;
R16. (ii) that the support needs of younger people under 65 who are living with a long-term illness/disability are accurately assessed, mapped, and costed so that a robust plan for resourcing these services van be developed;
R16. (iii) that the housing crisis for people with disabilities is addressed by funding support packages and providing a clear pathway for individuals to access these supports;
R17. that a standardised assessment tool for accessing homecare and PA services is developed and a protocol for prioritisation of resources to address the regional discrepancies that currently exist;
R18. that the HSE prioritises the work of the HSE ME Working Group
‘Any assessment process used for the purposes of reviewing a service user’s care plan should be relevant to the needs of the service users so as to appropriately and adequately assess their needs. There should be uniformity in the assessment models used in each community health area as during the course of the investigation, there was suggestion that a different model was used in a neighbouring community health area. It is therefore recommended that there should be a standardisation of assessment tools and methodology for ME sufferers in all CHOsi.
R19. Establish access to supports with care and independent living as a statutory right.
i Based on figures extrapolated from data in other countries and using the prevalence rate 0.2-0.4% of population.
ii Myalgic Encephalomyelitis: International Consensus Criteria, B. M. Carruthers et al, 2011. iii Myalgic Encephalomyelitis: International Consensus Primer, B. M. Carruthers et al, 2012.
iv Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review, Mark Vink and Alexandra Vink-Niese, 2018 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6176540/
v Current peer reviewed biological research:
ix See notes on PENE under Table 1. In the International Consensus Criteria on ME
i 8.R1. Culliton/O’Malley Report 2018.__________________________________________________