From BMC Health Services Research, 11:308 doi:10.1186/1472-6963-11-308 (open access journal), 11 November 2011.
What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)
Carly M Webb(1), Simon M Collin(2), Toity Deave(3), Andrew Haig-Ferguson(2), Amy Spatz(1) and Esther Crawley(2#)
(1) St George’s University of London, Cranmer Terrace, London, UK
(2)Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK
(3)Centre for Child and Adolescent Health, University of the West of England, Bristol, UK.
(#) Corresponding author.
Abstract (provisional)
Background
Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is relatively common and disabling with a mean time out of school of more than one academic year. National Institute for Health and Clinical Excellence (NICE) guidelines recommend referral to specialist services immediately if severely affected, within 3 months if moderately affected and within 6 months if mildly affected. However, the median time-to-assessment by a specialist service in the UK is 18 months. This study used a mixed-methods approach to examine factors associated with time taken to access specialist services.
Methods
Time-to-assessment was analysed as a continuous “survival-time” variable in Cox regression models using data from self-completed assessment forms for children attending a regional specialist CFS/ME service between January 2006 and December 2009. Semi-structured interviews about barriers experienced in accessing healthcare for their child were conducted with nine parents of children aged <17 years (8 individual and one parent couple). Interviews were digitally recorded and analysed using "thematic analysis".Results
405 children were assessed between 2006 and 2009 and information on school attendance was available on 388. Only 1/125 with severe CFS/ME and 49/263 (19%) with mild to moderate CFS/ME were seen within NICE recommended timeframe. Increased fatigue was associated with shorter time to assessment (HR = 1.15; 95% CI 1.03, 1.29 per unit increase in Chalder fatigue score; P=0.01). Time-to-assessment was not associated with disability, mood, age or gender. Parents described difficulties accessing specialist services because of their own as well as their GP's and Paediatrician's lack of knowledge. They experienced negative attitudes and beliefs towards the child's condition when they consulted GPs, Paediatricians and Child Psychiatrists. Parents struggled to communicate an invisible illness that their child and not themselves were experiencing.
Conclusions
GPs, Child Psychiatrists and Paediatricians need more knowledge about CFS/ME and the appropriate referral pathways to ensure timeliness in referral to specialist services.
I am surprised at the sentence ‘increased fatigue was associated with shorter time to assessment”, and will read the full article.
I was told that as seen sooner it will help the length of illness; in practice we have not found this; my child was seen 3 months in by specialist linked doctor, and 6 months from virus by one of these authors. The advice was followed to the letter, at points it caused relapse.
The specialist service could not provide regular support my child needed. Our GP is very helpful and when it became available my child was then seen locally by Consultant, physio’s, etc, whatever is needed has been made available, and in an understanding, empathetic, manner.
I cannot see a role for specialist services in the long term, except possibly in making a diagnosis, and ruling out anything else, which could save local doctors time, and then be managed locally. The ways of managing ME in children & young people needs to be within the mainstream understanding and practice for the long term.
The RCPCH issued a letter some months ago (I think it’s on investinme website) confirming they saw ME as a physical illness; the recognition & management of ME should be included in medical training.
We communicated the day to day of this illness and symptoms (including diaries and notes), and the physical state of the child is sitting in front of them, I do not see it as “invisible”, only in the sense of being ignored, and/or what the child and parents say is ignored. At times we were told to ignore the symptoms (by a specialist service).
I agree parents encounter negative attitudes, I have not heard from one parent who has not encountered these.
I agree Gp’s, child psychiatrists, paediatricians need more knowledge about ME, as commented above, but to put it into the mainstream as a physical illness.
I am even more surprised that this suggestion is in an article when one author referred our child to a psychologist who came across to us as having no understanding of levels of ME and whose action/advice caused a relapse.
Perhaps they since changed their view of ME.
We can only hope so Yeld. Thanks for your reply I don’t personally have children and was interested to read a little about your experiences.
I too was intrigued by the study. I can’t stop wondering how these ‘specialists’ are produced and where they can be found.
It is one thing to suggest they exist but in my experience they seldom do in sufficient quantity or indeed quality.
Begs the question I suppose: What exactly is a CFS/ME Specialist and just how can their effectiveness be fairly judged?