Wednesday, 10 July 2019
Department of Health
262. To ask the Minister for Health the number of children diagnosed with ME in the voluntary sector children’s hospital group, other voluntary hospitals and in the HSE acute sector in 2018 and to date in 2019; the criteria used to identify each level of severity that is mild, moderate, severe and profound; the data for same; the diagnostic criteria (details supplied) each paediatric department uses to diagnose ME; and if he will make a statement on the matter. [30206/19]
263. To ask the Minister for Health the paediatric services within the voluntary sector children’s hospital group and other voluntary hospitals, in the HSE acute sector and in the community health organisations in which a child that may potentially have ME as described in the WHO and SNOMED classifications be referred to which acknowledges ME is a physiological illness, that ME is not a mental health or psychiatric condition and acknowledges a number of other factors (details supplied); and if he will make a statement on the matter. [30208/19]
264. To ask the Minister for Health if ME will be acknowledged as a neurological disorder as stated in the WHO and SNOMED classifications; if he will request the HSE to commence the work of identifying a consultant and expert in the condition; and if he will make a statement on the matter. [30212/19]
265. To ask the Minister for Health if an assurance will be given that a child will be protected who has or may potentially have ME and is waiting for an appointment to diagnose or exclude ME using recognised diagnostic criteria from being threatened with being taken from their family into hospital for a programme associated with graded exercise therapy or enforced activity, be that schooling in hospital, walking and so on (details supplied); and if he will make a statement on the matter. [30215/19]
269. To ask the Minister for Health his views on whether general practitioners and paediatric services in the voluntary sector children’s hospital group and other voluntary hospitals in the HSE acute sector and community health organisations are providing appropriate knowledgeable care, using consistent diagnostic criteria and biomedical guidance across all children’s services to ensure that children that have or potentially and have ME are referred to a service which acknowledges ME is a physiological illness; acknowledges that ME is not a mental health or psychiatric condition and acknowledges a number of other factors (details supplied); and if he will make a statement on the matter. [30251/19]
270. To ask the Minister for Health if a child that has or potentially has ME will be referred to an appropriately knowledgeable paediatric service which is willing to diagnose ME and fulfils a number of criteria (details supplied); and if he will make a statement on the matter. [30252/19]
I propose to take Questions Nos. 262 to 265, inclusive, 269 and 270 together.
Chronic fatigue syndrome (CFS) / myalgic encephalomyelitis (or encephalopathy) (ME) is a complex debilitating disorder which is characterised by severe fatigue accompanied by a range of other symptoms.
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.
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.
Waiting times for access to these services can be lengthy. However, there is currently work 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.
As these questions relates to service matters, I have arranged for the questions to be referred to the Health Service Executive (HSE) for direct reply.