Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME)

[Cheesus]

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

Jessica Broughton, Sarah Harris, Lucy Beasant, Esther Crawley and Simon M Collin

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.

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2337-6

 

[Large Donner]

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.

8 out of 10 owners said their cats preferred it!!

 

[Barry53]

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

Jessica Broughton, Sarah Harris, Lucy Beasant, Esther Crawley and Simon M Collin

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.

Not read any further yet, but why do I get the feeling it is going to be full of conflations, misdirections, mislabelling, misleading by omission, emotive-language-over-good-science, etc, etc.

 

[trishrhymes]

I notice the interviews were done when patients were still in treatment. So highly biased by loyalty to kind therapists and hope that the treatment might work. I'd much rather they did them a year later. Then we might get some useful insights.

I shall not read the full paper. Can't face it.

 

[A.B.]

Mistreated patients had good things to say about a person that said a few kind words to them.

 

[boombachi]

We did not seek to explore patients’ experiences of specific treatments or components of treatment programmes such as CBT and GET.

It seemed mostly focussed on patients feeling validated and emotional support to accept being chronically ill rather than improving functionality.

The other principal limitation of our study is that we recruited patients who had reached the end of treatment. This means that the positive experiences that we have reported could be considered to represent ‘success stories’. We do not have figures for drop-out rates, which might reflect dissatisfaction with services and/or competing health issues. We would propose interviews with patients who do not complete treatment as an important area for future qualitative research. Our findings are susceptible to selection bias if patients were motivated to participate by a sense of gratitude and an altruistic desire to ‘give back’ to the clinic after a positive experience.

Good point!

The study seems to pick out what patients value about specialist services. I.e. understanding of the condition, validation, empathy. It makes the point at the end that these are all things that should be reasonably expected in primary care but are lacking due to current attitudes.

I only read the results and discussion. I think they were realistic about the limitations of the study. Best evidence I have seen yet for redirecting the resources for these clinics into GP training. If GPs could validate and be empathic and a practice nurse give information and advice like they do other chronic conditions that would serve the same purpose as far as I am concerned.

 

[Dolphin]

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2337-6/open-peer-review

How does Open Peer Review work?
Open peer review is a system where authors know who the reviewers are, and the reviewers know who the authors are. If the manuscript is accepted, the named reviewer reports are published alongside the article. Pre-publication versions of the article and author comments to reviewers are available by contacting info@biomedcentral.com. All previous versions of the manuscript and all author responses to the reviewers are also available.

You can find further information about the peer review system here.

Previously with open peer review, you got to see the authors' responses. Now you have to request them. If anyone gets them, I would be interested in seeing a copy. If you are refused access, I would be interested in hearing about that also.

 

[Esther12]

What a weird and worthless study. And Action for ME funded it.

Action for M.E covered the costs of travel to interview locations.

Great work.

I'm rather less than clear what this paragraph means, anyone else know?

The goal attainment approach used by services, and commented upon as one of the more challenging aspects of treatment, has been associated with improvement in quality of life in CFS/ME patients regardless of initial health status [41]. The effectiveness of this approach, in conjunction with other factors such as services’ attention to detail around issues such as accessibility and flexibility, would contribute to favourable views of services among patients. ‘Alternative’ approaches to treatment, such as accepting the legitimacy of patients’ accounts of their illness and providing realistic expectations of treatment outcomes [42], have already been adopted, and our study confirms that referral to a specialist service is highly valued [43].

I notice the interviews were done when patients were still in treatment. So highly biased by loyalty to kind therapists and hope that the treatment might work. I'd much rather they did them a year later. Then we might get some useful insights.

I don't think that's right. Sounds like they'd finished treatment. [edit: Just seen that @boombachi quoted the same section above].

The other principal limitation of our study is that we recruited patients who had reached the end of treatment. This means that the positive experiences that we have reported could be considered to represent ‘success stories’. We do not have figures for drop-out rates, which might reflect dissatisfaction with services and/or competing health issues. We would propose interviews with patients who do not complete treatment as an important area for future qualitative research. Our findings are susceptible to selection bias if patients were motivated to participate by a sense of gratitude and an altruistic desire to ‘give back’ to the clinic after a positive experience.

 

[Cheesus]

I'm rather less than clear what this paragraph means, anyone else know?

I think the goal attainment approach is where you set small goals for yourself to work towards. So, when patients are working towards small goals (presumably worked out with the therapist) and services are paying attention to ensuring that patients can travel to appointments, etc, patients are more likely to report a more favourable experience of the service.

I'm not 100% sure what the last sentence means or why they included it in that paragraph, though it is quite remarkable that accepting patients' accounts of their own illness as legitimate is considered an alternative approach to therapy. Surely that should be the default approach to therapy.

The more I look at that last sentence the more certain I am that it doesn't make any sense.

 

[Hutan]

We recruited patients who were concluding treatment at one of three outpatient NHS specialist CFS/ME services in England.

So, yes, they asked if people would participate as they were finishing.

A cross-sectional design was adopted with an opportunity sample of 16 patients.

16 patients who, as the study acknowledges, made it through to the end of the programme.

Four participants reported that referral to the specialist service had been a lengthy process, mainly because diagnostic procedures required ruling out other medical conditions. The numerous medical tests and appointments with multiple clinicians was described as being anything from “hard work” to “very very distressing”. Four participants discussed having procedures, such as scans or tests for brain tumours, which were frightening and “disconcerting”

Subtext - stop giving these people expensive tests that just frighten them. All they need is a kind therapist...

Although all participants felt that they had benefited from accessing the specialist service, half recalled finding initial stages of treatment difficult. Many discussed personal responses they believed were key to overcoming challenging periods during treatment. Characteristics described included being “open”, “positive”, “proactive”, “willing to try anything”, being able to take “a leap of faith”, and having “perseverance”.

Subtext - those people who dropped out have personality problems

There seems to be quite a change in message now - treatment isn't going to cure you. It's all about acceptance.

The majority of participants recalled having had specific hopes and expectations of referral and treatment, including to confirm diagnosis, “reduce symptoms”, obtain “answers”, and manage symptoms better. The most frequently discussed hope prior to accessing specialist services was for a “cure”, a return to previous health or abilities, or to “get back to what I was used to”:
“My expectations were quite high when I started thinking it’s going to sort me out, they’ve found out what I’ve got now it’s going to sort it out, but it’s not that way” [P8]

The information about CFS/ME provided by the specialist clinics was valued by many, but focus on management remained difficult whilst hopes for a cure remained:
“It’s just frustrating because nothing makes it better I suppose…it was good getting the information but it doesn’t get rid of it” [P14]

Time appeared to influence acceptance, with some participants recalling a gradual acceptance that treatment might not be curative:

Moving away from the idea of cure towards goals related to management of CFS/ME was linked to obtaining information and acquiring knowledge about the condition:

Many discussed the importance of acceptance and the use of goal setting to navigate adaptations to a life with chronic illness.

Yes, @Esther12 , I agree, this was an interesting paragraph (below). My impression is that participants liked having a therapist and each other to talk to but didn't think much of GET and CBT. I think the authors seem to be saying 'more GET and CBT'. The reference they give to support that idea isn't PACE it seems, it's this:
Query M, Taylor RR. Linkages between goal attainment and quality of life for individuals with chronic fatigue syndrome. Occup Ther Health Care. 2006;19(4):3–22. (I haven't seen it).

The goal attainment approach used by services, and commented upon as one of the more challenging aspects of treatment, has been associated with improvement in quality of life in CFS/ME patients regardless of initial health status [41]. The effectiveness of this approach, in conjunction with other factors such as services’ attention to detail around issues such as accessibility and flexibility, would contribute to favourable views of services among patients. ‘Alternative’ approaches to treatment, such as accepting the legitimacy of patients’ accounts of their illness and providing realistic expectations of treatment outcomes [42], have already been adopted, and our study confirms that referral to a specialist service is highly valued [43].

 

[Esther12]

@Cheesus Thanks. I also wondered if by 'more challenging' they meant 'unpopular'. They never seem to detail any problems the patients had with these services... other than that there wasn't enough of them!

 

[Large Donner]

What a weird and worthless study. And Action for ME funded it.

Oh boy!!

 

[trishrhymes]

If you want to know what patients think of a treatment, don't just ask the ones who got as far as attending the final session. Ask everyone who started the treatment, and wait at least 6 months for reality to outweigh good feelings about the therapist.

Worthless.

 

[Skippa]

This is really interesting, I was in attendance in 2015 not 2014 but we got asked these questions and filled in forms about our experiences about 1 or 2 sessions before the final.

And what I wrote did NOT reflect my opinions after the final session when I realised there was no help or treatment coming whatsoever.

I say this because one of those patient quotes quoted by @Hutan above looks EXACTLY like something I wrote.

 

[ash0787]

my doctor wasn't aware of any of those specialists, not specific to the disease at least,
but I didn't pursue it anyway, thought it would be a waste of energy and hospital resources

 

[Luther Blissett]

This is really interesting, I was in attendance in 2015 not 2014 but we got asked these questions and filled in forms about our experiences about 1 or 2 sessions before the final.

And what I wrote did NOT reflect my opinions after the final session when I realised there was no help or treatment coming whatsoever.

I say this because one of those patient quotes quoted by @Hutan above looks EXACTLY like something I wrote.

You can always find out by making a subject access request to see.

https://ico.org.uk/for-organisation...on/principle-6-rights/subject-access-request/

 

[RogerBlack]

You can always find out by making a subject access request to see./

Indeed - trial participants can get all of their data, as there is no identity concern.

This would be rather interesting.

 

[A.B.]

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.

Haha no, you failed to control for bias and include no long term data. It's junk. Action for ME wasted scarce resources, demonstrating once again that it cannot be trusted to make decisions about research.

 

[Cheesus]

@Cheesus Thanks. I also wondered if by 'more challenging' they meant 'unpopular'. They never seem to detail any problems the patients had with these services... other than that there wasn't enough of them!

I assumed they meant difficult rather than unpopular, but you could be right.

 

[Skippa]

Also, I feel this is very important:

Above it says it doesn't account for those who dropped out.

Regardless if my comment was or wasn't included in their write-up, I can tell you one thing:

THE DROP OUT RATE WAS HUGE. THERE WAS ONLY A 50% ATTENDANCE at the final session. I am picturing their faces now, some cool people I met, noone was fooled, I wish I knew how they were getting on now.