AHMF: Submission to RACP Guidelines, sections 11 & 12

Submission to the RACP CFS Clinical Guidelines Review Committee
Continued

Authors: Christine Hunter, Annette Leggo, Anne Gotsis and Maureen Stephenson

11.0 Role of Community Services

11.1 "COMMUNITY SERVICES" include:

community health services
social work services with public hospitals
community services; community information services; neighbourhood aids
Home and Community Care Program (H.A.C.C.)
home nursing services
respite care services
public housing
self-help groups; support and consumer based groups
community advocacy; legal and quasi-legal services

11.2 Currently, community services in Australia serve people with ME/CFS, their families and carers very poorly. Services and support for others experiencing chronic and serious illness are generally available. Usually this assistance is provided without the ambivalence, relative ignorance and generally negative attitudes with which this assistance is provided to CFS patients, their families and carers. This situation exists in relation to services delivered by both trained professionals and by voluntary workers. The situation is totally unjustifiable in the light of the considerable suffering and disadvantage experienced by many people with this disease.
The doctor has the major responsibility for the care of people with ME/CFS. However, many ME/CFS patients do not have a supportive, well informed medical practitioner. For them, their families and carers, the support of local community services is vital. For those patients with families or others who can support and care for them, community support is essential. For those people with this disease living on their own - and often dependent on community services for meeting their most basic needs - lack of appropriate support often proves devastating. The doctor and community services must work together to meet the needs of people with this disease. The current serious inadequacies within community services for people with ME/CFS can be best addressed by a commitment to public education contributed to and publicly backed by the Australian medical profession.
Other essential processes are:

increases in (or initiation of) funding - at the three levels of government.
the implementation of new services.
the addition of specialised staff within mainstream services.
the monitoring of existing services.

However without medically backed and properly informed public education no real progress can be made.
11.3 Issues for patients, their families and/or carers: The following issues have serious implications for the provision of Australian community services:

length of illness - and either fluctuating or ongoing severe symptoms.
community ignorance regarding this disease; consequent negative attitudes; lack of community acceptance etc. (Often, this is compounded by lack of family support, due to ignorance of the disease and incorrect medical information.)
physical and/or social isolation - due to chronic illness, poor community acceptance of the disease, cognitive dysfunction, economic disadvantage as a result of illness and other issues.
inability or difficulty in caring for oneself and/or for those who depend upon the patient.
urgent need for information on practical day-to-day management of the disease.
need for contact with others in the same situation - in order to obtain information, moral support and the understanding often lacking with the families, the medical profession and the community.
need for "public advocates" - to enable patients to receive social security, medical insurance, workers compensation and other entitlements.
VARIABILITY, UNPREDICTABILITY AND INVISIBILITY OF SYMPTOMS OF THIS DISEASE.

11.4 Deficiencies in service delivery to people with ME/CFS and their families/carers by "Community Services":
Poor linkages between the medical profession and the range of community services in relation to this disease, due to:

lack of commitment by the medical profession, due to generally held negative attitudes to ME/CFS.
lack of understanding by doctors of the need for community services support for ME/CFS patients.
lack of follow-up by doctors if they do initiate a referral to a community service. iv. general reluctance of GPs to refer any patients to community services.

Poor linkages between specialist self-help groups (eg. State "ME/CFS" Societies) and the range of community services due to:

lack of financial and general support to these groups by government, medical profession and community services - owing to lack of understanding of their benefits to consumers.
'community services' ignorance and generally negative attitudes to the disease.
Lack of accessibility for consumers and potential consumers, due to:
Lack of staff training, leading often to inflexible and inappropriate help being offered, e.g. - Community nurses needing to be aware of abrupt fluctuations in symptoms which require flexible care. - Meals-on-Wheels presenting problems to bed-ridden patients.
Lack of effectively communicated and accessible information regarding services.

11.5 Notes regarding individual service type in relation to their service for ME/CFS patients:
Social Work Services within Public Hospitals: Hospital social workers have to act as advocates and intermediaries within the hospital system.
H.A.C.C. Program: These services are provided on a local basis. People who live alone or have dependent children ( or other dependent family members) living with them must be regarded by all H.A.C.C. Services (and in particular "Home Care") as having top priority. The burden upon carers is often overwhelming. Where service is delivered by staff with only basic training, meeting the needs of people with ME/CFS is a challenge. There must be acceptance by all H.A.C.C. workers that the person with ME/CFS is to be believed, in terms of their statement of what type of needs they have at any one time.
Home Nursing Services: In most local home nursing areas there will inevitably be patients who urgently require this assistance but are not receiving it. The negative experience of hospitalisation for these patients makes this service even more essential. Present demand does not represent the level of need due to lack of G.P. referral. Family members and carers currently carry a huge burden of providing 24 hour care with almost no relief.
Respite Care: Currently there are no respite care services with appropriate services for people with ME/CFS. Respite services that are available for people with other chronic/disabling diseases are not appropriate.
Self Help Groups: Consumer based groups are essential components of the health and welfare sector. They enable consumers to provide feedback to service providers and provide mutual support. These groups are critically important to people with ME/CFS.

12.0 Income Security - Social Security and Other Entitlements

12.1 Because ME/CFS can be a severely disabling, chronic illness of indeterminate length; and because there is no consistently successful treatment and no known cure, patients with this illness must be considered eligible for Commonwealth Department of Social Security entitlements such as:

Sickness Benefits
Disability Support Pension and related entitlements (e.g. Pharmaceutical Benefits)
Mobility Allowance.

12.2 In addition, the following other entitlements are applicable:

Support under the Commonwealth/State Program of Appliances for Disabled People (P.A.D.P.) Scheme, available through public hospitals, for aids and appliances
State Mobility Parking Permits (sometimes called "Disabled Parking Permits") * Disabled Taxi Service Permits.

12.3 People who care for an ME/CFS patient on a full-time basis should be eligible for the Department of Social Security Carer's Pension.
12.4 In assessing eligibility to Social Security and other entitlements for people with ME/CFS and their carers, the following points need to be seriously considered:

medical reports should include cognitive impairment which can preclude even part time work
the particulars of the symptoms which contribute to the patients incapacity, of which fatigue may be only one of many
complexity of the disease - including the fact that onset can be sudden or gradual and that subtle abnormalities can be significant eg. neurological abnormalities
no common or predictable pattern of symptoms
lack of documentation of severe symptoms; severely ill patients are often unable to attend surgeries
the need to be alert to the misdiagnosis of depression or M.S. when there are clear discriminators
fluctuations of type, frequency and severity of symptoms - leading to unpredictability of ability to work or receive education/training
duration of illness and incapacity can be uncertain and unpredictable and can be exacerbated by inappropriate but prescribed exercise/activity programs eg. rehabilitation programs * chronicity/severity is not related to attitudes, belief systems, psychological inadequencies, inappropriate bed rest or "deconditioning"
prejudicial labelling, dismissive attitudes and damaging psychospeculation
epidemiological studies have shown that there is no evidence for the popular mythology that ME/CFS is a disease of high achievers - the disease crosses all age, sex, geographic and socio-economic boundaries
people who experience difficulty articulating their condition with authority figures - either through socio-economic or educational disadvantage - can be greatly disadvantaged in securing entitlements.

12.5 Role of medical profession:

Education and Training: Commonwealth Medical Officers and Social Security staff (e.g. Disability Support Officers; Sickness Benefit Assessors) require accurate information relating to ME/CFS supplied by the medical profession and others with specific expertise (e.g. well informed patient representatives). Particular emphasis should be placed on severe symptomatology, unpredictability of symptoms, and the holistic approach that is required when assessing the range of debilitating symptoms that are experienced by patients.
Advice and Support for ME/CFS Patients: Doctors who have ongoing contact with patients have an important role in encouraging and enabling patients to access their entitlements; in providing information in relation to the entitlements and ensuring that patients do eventually receive income support.

12.6 Role of self - help and support groups: ME/CFS Societies and Support Groups, together with other community services have a vital role to play in informing, advising, supporting and advocating for people with CFS in relation to their entitlements to income support.
12.7 CURRENT URGENT ISSUE REVISED "IMPAIRMENT SCHEDULES" FOR THE DISABILITY SUPPORT PENSION ARE DUE TO BE TABLED IN THE SENATE IN APRIL. THEY WERE REJECTED BY THE SENATE ON THE LAST DAY OF SITTING IN 1996. THEY FOCUS ON THE NEED FOR COMMONWEALTH MEDICAL OFFICERS TO RECOMMEND ONLY PEOPLE WHO RECEIVE, OR CONTINUE TO RECEIVE, THE DISABILITY SUPPORT PENSION WHEN THEY ASSESS THERE TO BE A CERTAIN LEVEL OF IMPAIRMENT IN RELATION TO ONE AREA OF DISABILITY. THIS WOULD PRECLUDE MANY PEOPLE WITH CHRONIC CONDITIONS, WHERE THEIR INABILITY TO WORK IS CAUSED BY A NUMBER OF DISABLING SYMPTOMS. ME/CFS PATIENTS ARE WITHIN THIS CATEGORY. WE REQUEST THAT THE REVIEW COMMITTEE TAKE UP THIS ISSUE WITH SENATOR JOCELYN NEWMAN, MINISTER FOR SOCIAL SECURITY, AS A MATTER OF URGENCY. IF THE NEW SCHEDULES PASS THE SENATE AND ARE APPLIED WHEN PEOPLE WITH ME/CFS APPLY FOR DSP (OR ARE REVIEWED), IT IS LIKELY THAT PEOPLE WHO EXPERIENCE CONSIDERABLE SUFFERING AND WITH NO OTHER WAY OF RECEIVING INCOME SUPPORT WILL BE LEFT TOTALLY UNSUPPORTED.
(Please note: Some Department of Social Security staff are expressing great concern over the future of those, who because they lack one pre-dominant disabling symptom, may not be able to receive any statutory income support in spite of having no access to any other income. People with ME/CFS are one of the groups about which they are concerned.)

Continue to section 13