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

[RogerBlack]

You could well be right that it is someone's PhD. I had a quick look and couldn't find it here: http://ethos.bl.uk

If anyone finds it, perhaps they could post a link as it might be interesting to see whether the thesis was much different/contained any extra interesting information.

http://www.bath.ac.uk/library/dissertations/index.php?programme=MSc+Health+Psychology&online=

Adult Patients Experiences of an NHS Specialist Service for Chronic Fatigue Syndrome/ME

Broughton, Jessica, 2014

(this is not available without a bath uni login).

 

[Dolphin]

https://www.leedsandyorkpft.nhs.uk/.../sites/6/2017/03/innovation-issue27-jan17.pdf

Project
Jessica Broughton, University of Bristol, jb14126@bristol.ac.uk
This qualitative research study aimed to explore patients’ experiences of NHS specialist services for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME).

Sixteen participants, who had recently completed a treatment programme at one of three specialist services in England, were recruited to the project and took part in semi-structured interviews. Participants were interviewed between June and September 2014. A topic guide for interviews was developed through consultation with a patient group from a leading CFS/ME charity.

Using thematic analysis, three themes were identified:
• ‘Journey to specialist services’;
• ‘things that help or hinder’; and
• ‘support systems’.

A wide range of factors were 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 is probably related to the contested nature of the condition. Many participants had experienced a lack of medical and social support and validation before attending the 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. The experiences of CFS/ME patients in this study showed that NHS specialist CFS/ME services had a vital role to play in patients’ journeys towards rehabilitation and an improved quality of life. These improvements came about through a process which included therapeutic outcomes, validation of patients’ experiences, acceptance, and practical advice and support.

 

[Dolphin]

"Participants described how specialist services played a unique role, which was related to the contested nature of the condition."

It's only contested by this lot, everyone else knows it's physiological.

"Many participants had experienced a lack of validation and medical and social support... ".

I wonder why?

This just shows, once again, the breathtaking lack of self-awareness shown by Crawley et al. If patients experience a lack of validation, not to mention medical and social support, it's because of the relentless campaign by the Wessely school to "contest" the existence of a multi-systemic neuro-immune illness by their continued and relentless campaign to psychologise it. But self-awareness is clearly too much to expect from anyone involved in this bunch of self-serving narcissists and their desperate agenda to discredit us all.

https://www.facebook.com/meassociation/posts/1403457179711936?comment_id=1403464099711244&comment_tracking={"tn":"R9"}

 

[RogerBlack]

(of the original study)

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.

Reading further on in the original paper.

Participants were recruited between July–September 2014. Patients who completed a course of treatment within this period were offered a Patient Information Sheet and ‘Consent to Contact’ Form by a clinician involved in their treatment. Interested patients were required to opt-in to the study by returning the Consent to Contact Form to the research team, after which the principal researcher contacted the patient by telephone to discuss the study in further detail. Participants were not eligible to participate in this study if they were: age < 18 years; too severely affected to be able to participate in interviews; unable to provide informed consent; unable to read and understand the Patient Information Sheet and Consent Forms; or not diagnosed with CFS/ME as a primary diagnosis.

I can't see any possible way this could be a biased sample. Nope.

More seriously.
Misses drop-outs, intentionally leaves off very severely affected people (who may be worseners), what was on the patient information sheets, and what was said around that time, were they offered to everyone, how was the study 'discussed in further detail', ...
The phone interview was half an hour to an hour.

If you are deeply unhappy about your treatment (assuming you completed it) - without extremely careful handling at this point (neglecting the bias that people feeling crap may not be able to do this), someone coming off as looking for positive answers only will get very few acceptances.

Also, the set of people answering reported a 7.5 year average since disease onset, compared to 2 years for the whole set of patients.

 

[Dolphin]

69 references to the string "treat" (i.e. treat, treatment, treated, etc.) in the text of the paper (i.e. excluding the references). This really jarred with me given what is offered.

 

[Dolphin]

A reader would come away thinking these clinics were having very good results when the quantitative results now available in two papers that both involved Crawley say otherwise:

http://forums.phoenixrising.me/inde...-study-among-adult-patients-in-england.52845/

http://forums.phoenixrising.me/index.php?threads/treatment-outcome-in-adults-with-cfs-a-prospective-study-in-england-based-on-the-cfs-me-nod.22583/#post-344796

 

[Dolphin]

For what it is worth:

 

[Dolphin]

For what it is worth. This is a supplemental file. The numbering of the 12 questions has messed up when I copied it in.

What are patients’ experiences of NHS Specialist treatment for CFS/ME?

Topic Guide.


Welcome, introduction, stress confidentiality. Discuss consent, sign form or check continues to be happy with consent.

1. Tell me about your CFS/ME?

Prompts: How long have you had it? Have you tried other treatments or therapies? What treatment were you receiving before referral to [specialist service]?

1. Tell me about your current treatment?

Prompts: What current treatment involves? What is it called? How often do you access it? Who delivers this treatment to you (i.e. types of healthcare professionals)?


3. How accessible is the specialist service you currently attend?

Prompts: How often do you attend for treatment? How do you travel to the specialist service? Does attendance have health consequences (i.e. post exertional malaise) which is more significant than what you normally experience?

1. What was it like to be referred to specialist treatment?

Prompts: Was this a positive or negative thing for you? How was the news delivered? By whom?


5. What had you wanted from specialist treatment prior to accessing services?

Prompts: Do you have goals for specialist treatment? Did / do you expect specialist treatment to differ from your previous treatment? In what way?

1. Do you think accessing a specialist service has made a difference?

Prompts: Are things better or worse now? Which aspects of specialist treatment are most / least beneficial to you?


7. How would you describe your relationship with staff at the specialist service?

Prompts: Do you have rapport with staff? Do you feel that they listen to you / your views are taken into account? Can you rely on staff if you need? Does your relationship with staff have any impact on your experience of treatment?

1. Are there other things that would be helpful in terms of specialist treatment for CFS/ME?

Prompts: Are there aspects of your CFS/ME which are not helped/addressed by the specialist treatment you are currently accessing? How important is this?

1. Are you accessing psychological services as part of your treatment?

Prompts: If so, how do you feel about this? Had you accessed psychological services prior to referral to specialist services for CFS/ME?

1. Has accessing psychological services made a difference to you? (positive or negative)

Prompts: Has psychology helped with the physical symptoms of your CFS/ME? Are there other benefits to accessing psychological services?

1. What is it like to access psychological treatment for a condition with physical symptoms?

Prompts: Is it important what type of treatment you receive? Why / Why not?

1. Do you have anything else you’d like to add?

Prompts: Was there anything we should have asked, but didn’t?

I don't think some of these topics were covered in much if any detail in the paper e.g. I don't recall any responses mentioning "psychological services" specifically.

 

[RogerBlack]

I don't think some of these topics were covered in much if any detail in the paper e.g. I don't recall any responses mentioning "psychological services" specifically.

I wonder if they were, indirectly. "those with comorbid ... excluded" (not a direct quote from paper)

 

[Dolphin]

Minor point:
Another paper by Esther Crawley and Simon M Collin that does not spell out the meaning of the acronym ME when it is first introduced. It is very odd to see this in published papers

Chronic Fatigue Syndrome (CFS), also known as ‘ME’, is a long-term disabling condition characterised by debilitating fatigue of unknown cause, post-exertional malaise, cognitive dysfunction and disturbed/unrefreshing sleep, plus other symptoms including muscle and joint pain, headaches, and dizziness [1]. CFS/ME imposes an immense burden on patients, carers and families [2, 3].

 

[Wonko]

I wasn't aware the NHS had "specialist treatment" or even "treatment" for M.E.

I'd be interested to know what "treatment" is available on the NHS that uses the same definition of treatment that would be used for other conditions.

I thought it was just a "medical professional" in a room going "erm...." or possibly one going "okay...okay...okay" whilst ticking boxes saying not disabled in this category, not disabled in this category.....regardless of what they were told.

 

[Dolphin]

I think authors who are involved with providing services that are being assessed should mention this as a conflicting interest. I'm not sure whether it applies to anyone here.

 

[Dolphin]

An exploration of patients’ experiences of CFS/ME treatments within the NHS is timely and exigent, given opposition from some quarters to evidence-based therapies recommended by NICE and highly discrepant views on the best approaches to treatment [22].

Mallet M, King E, White PD. A UK based review of recommendations regarding the management of chronic fatigue syndrome. J Psychosom Res. 2016;88:33–5.

I find the wording irritating: it makes it sound that people are objecting to proven therapies.

Also this paper if it is supposed to be exploring this, it does not do a very good job of discussing the treatments and any negative experiences people had of them.

 

[Dolphin]

I wonder if they were, indirectly. "those with comorbid ... excluded" (not a direct quote from paper)

I don't recall anything like that. I searched for the string "excl" and this is the only thing that came up:

Our remit to explore the experiences of the ‘majority’ of CFS/ME patients meant that we excluded severely affected patients.

And if they want to exclude people accessing psychological services, it seems odd to use up these three questions, 25% of the questions, asking people about them:

1. Are you accessing psychological services as part of your treatment?

Prompts: If so, how do you feel about this? Had you accessed psychological services prior to referral to specialist services for CFS/ME?

1. Has accessing psychological services made a difference to you? (positive or negative)

Prompts: Has psychology helped with the physical symptoms of your CFS/ME? Are there other benefits to accessing psychological services?

1. What is it like to access psychological treatment for a condition with physical symptoms?

Prompts: Is it important what type of treatment you receive? Why / Why not?

 

[Dolphin]

Patients also receive practical support around employment and the benefits system.

I know that some services won't help with benefit applications.

It is also interesting to hear about employment. The readers aren't told about the poor results on employment measures in a separate paper (admittedly this paper was not published till a month later):
http://forums.phoenixrising.me/inde...-study-among-adult-patients-in-england.52845/

 

[Dolphin]

Services shared a philosophy of rehabilitation, aiming for ‘recovery’ or ‘significant improvement’, whilst acknowledging that this would not be attained by all patients.

In what way do they acknowledge to the patients this/these will not be attained by all patients? The model seems to suggest there is no reason why people can't get back to normal.

It is also interesting the way they mention "recovery" given what is posted later:

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

Various approaches were used by clinicians to assist with setting goals, including addressing expectations of cure at the patient’s first appointment, delaying discussion until some progress had been made, providing information advising participants of the long term nature of CFS/ME [do all do this? I don't recall it coming across in the PACE trial manuals for example.], and being “open” and “honest” about the limitations of treatment [do all do this?]. 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:

--

The services in our study shared a philosophy of aiming for recovery or ‘significant improvement’, whilst acknowledging that this would not be attained by all patients, that ‘recovery’ would mean different things to different people, and that talking about a patient’s pre-illness lifestyle could be part of the therapeutic process.

I don't recall hearing this idea that "recovery" could mean different things to different people when they are discussing the results of CBT and GET trials, in the CBT and GET manuals, et cetera.

 

[Dolphin]

Not having an answer was in itself challenging:

“I must have been the only patient in the world who was in tears when none of the tests said what was wrong because I just wanted something to sort it out”[P3]

I can relate. I doubt this is an uncommon reaction. Possibly it is an indictment of medicine that doctors don't tell patients that it can take a lot of time to get a diagnosis for various things and not everything shows up on a lot of tests.

 

[Dolphin]

Some were initially misdiagnosed, for example with depression, multiple sclerosis or glandular fever.

 

[Dolphin]

Some participants had felt the need to “hide” symptoms of CFS/ME, particularly from their employer, for example using annual leave to manage symptom flare up for a number of years:

“I kept it totally secret…and I would just hide on the [pause] at the times I didn’t feel well…I had this secret life” [P6]

Sad, but I'm not sure whether attending a rehabilitation service helps much if at all with this.

 

[Dolphin]

Role of GPs

[..]

Participants with less positive experiences described a number of barriers to accessing specialist services, including a lack of information, having to take a proactive role in asking for diagnostic tests, and GPs’ lack of “awareness”, “knowledge” or “belief” in CFS/ME:

“My mum did some research and she asked if it was ME and he said that there was no such thing” [P14]