Tag: specialist care

Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England

Abstract:

BACKGROUND: Few studies have explored patients' experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England.

METHODS: Semi-structured interviews were conducted during the period June-September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views.

RESULTS: Three themes were identified: 'Journey to specialist services'; 'Things that help or hinder treatment'; and 'Support systems'. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants' experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients' experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society.

CONCLUSIONS: The experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients' journeys towards an improved quality of life. This improvement came about through a process which included validation of patients' experiences, acceptance of change, practical advice and support, and therapeutic outcomes.

Source: Broughton J, Harris S, Beasant L, Crawley E, Collin SM. Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England. BMC Health Serv Res. 2017 Jun 2;17(1):384. doi: 10.1186/s12913-017-2337-6. https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2337-6  (Full article)

Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME)

Abstract:

BACKGROUND: Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and disabling. Current guidance recommends referral to specialist services, although some general practitioners believe the label of CFS/ME is harmful and many are not confident about diagnosing CFS/ME. Aim Explore whether or not adolescents and their mothers value referral to a specialist service for young people with CFS/ME.

METHODS: A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]. In-depth interviews were undertaken with 13 mothers and 12 adolescents participating in the SMILE study. Transcripts were systematically assigned codes using the qualitative data organisation package NVivo and analysed thematically using techniques of constant comparison.

RESULTS: Gaining access to the specialist service was difficult and took a long time. Mothers felt that they needed to be proactive and persistent, partly because of a lack of knowledge in primary and secondary care. Having gained access, mothers felt the CFS/ME service was useful because it recognised and acknowledged their child’s condition and opened channels of dialogue between health-care professionals and education providers. Adolescents reported that specialist medical care resulted in better symptom management, although some adolescents did not like the fact that the treatment approach limited activity.

CONCLUSIONS: Adolescents and their mothers value receiving a diagnosis from a specialist service and making progress in managing CFS/ME. General practitioners should support adolescents with CFS/ME in accessing CFS/ME specialist services, consistent with current guidance.

 

Source: Beasant L, Mills N, Crawley E. Adolescents and mothers value referral to a specialist service for chronic fatigue syndrome or myalgic encephalopathy (CFS/ME). Prim Health Care Res Dev. 2014 Apr;15(2):134-42. doi: 10.1017/S1463423613000121. Epub 2013 Apr 25. https://www.ncbi.nlm.nih.gov/pubmed/23731646

 

What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Abstract:

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. 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.

 

Source: Webb CM, Collin SM, Deave T, Haig-Ferguson A, Spatz A, Crawley E. What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). BMC Health Serv Res. 2011 Nov 11;11:308. doi: 10.1186/1472-6963-11-308. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228771/ (Full article)

 

Patients’ hopes and expectations of a specialist chronic fatigue syndrome/ME service: a qualitative study

Abstract:

BACKGROUND: The 2007 National Institute for Health and Clinical Excellence guidelines on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) recommend early management of the condition. Investment by the Department of Health has expanded the number of specialist U.K. CFS/ME services but there has been little research on what patients hope or expect from referral.

METHODS: A qualitative study exploring hopes and expectations of patients newly referred to a CFS/ME Service in the South of England. Interviews with 20 patients were analysed using the constant comparative method.

RESULTS: Participants hoped referral to a specialist service would clarify diagnosis, give guidance and support, assist in understanding the complexity of the illness and provide hope for the future. While many participants valued the support of their GP, all viewed referral as offering a level of specialist expertise beyond that available in primary care. Many participants expressed high levels of uncertainty about the nature of CFS/ME. While participants hoped that the service would be able to provide information and guidance, many expressed the view that more information earlier in their illness would make the waiting period less stressful and make it possible for them to do more to help themselves.

CONCLUSIONS: GP referral to a specialist service appeared to be highly valued by the participants in this study. The levels of uncertainty expressed by many patients about the nature of CFS/ME raises the issue of the role of information on CFS/ME during the early stages of the illness and suggests a need for more reassurance and positive advice during the waiting period.

 

Source: McDermott C, Lynch J, Leydon GM. Patients’ hopes and expectations of a specialist chronic fatigue syndrome/ME service: a qualitative study. Fam Pract. 2011 Oct;28(5):572-8. doi: 10.1093/fampra/cmr016. Epub 2011 May 9. http://fampra.oxfordjournals.org/content/28/5/572.long (Full article)