I propose to take Questions Nos. 791, 815, 818, 819 and 821 together.
Myalgic Encephalomyelitis (or encephalopathy) (ME) is a complex debilitating disorder which is characterised by severe fatigue accompanied by a range of other symptoms. ME is sometimes known as Chronic Fatigue Syndrome (CFS).
There is currently no known, specific, medical diagnostic test to determine or confirm a correct diagnosis of ME and no specific treatment which works for all sufferers is currently available. As a result clinical assessment and the design of care plans need to be tailored to the individual patient. There are assessments and tests which can be carried out in primary care settings by a General Practitioner. Specialised tests may be required when considering and ruling out other diagnoses. Relevant specialists are usually accessed through out patient clinics at secondary care level. The General Practitioner is regarded as best placed to refer patients, if appropriate.
Treatment for ME is tailored to address the varying symptoms presented by those affected by ME. In general, these treatments are delivered within the context of primary care, with referrals into secondary care for specialist interventions in the areas of Neurology, Rheumatology, Pain Specialists, Endocrinology, Immunology, Cardiology, etc. Different patients, depending on their primary symptoms, will require different Consultant input. The challenge in relation to ME is that it does not sit within one specialty, but crosses a number of specialties, with patients frequently attending different Consultants for management of their symptoms as and when they arise. Consultants are well used to coordinating the care of patients that require the input of their colleagues and other members of the multidisciplinary care team.
Work is under way as part of the implementation of the Strategy for the Design of Integrated Outpatient Services 2016-2020, specifically as regards addressing how and where the patient is treated and the classification of referrals with corresponding clinically recommended time-frames. Consideration is also being given to condition specific referral forms. This work should see significant improvements with respect to access to appropriate services.
The HSE provides a range of assisted living services including Personal Assistant and Home Support Services to support individuals to maximise their capacity to live full and independent lives.
PA and Home Support Services are provided either directly by the HSE or through a range of voluntary service providers. The majority of specialised disability provision (80%) is delivered through non-statutory sector service providers.
Services are accessed through an application process or through referrals from public health nurses or other community based staff. Individual’s needs are evaluated against the criteria for prioritisation for the particular services and then decisions are made in relation to the allocation of resources. Resource allocation is determined by the needs of the individual, compliance with prioritisation criteria, and the level of resources available. As with every service there is not a limitless resource available for the provision of home support services and while the resources available are substantial they are finite. In this context, services are discretionary and the number of hours granted is determined by other support services already provided to the person/family.