ME/CFS patients unmet health & social care needs in the UK

[Ember]

http://www.prohealth.com/library/showarticle.cfm?libid=16616

ProHealth.com
November 2, 2011

Article:
Social support needs for equity in health and social care: A thematic analysis of experiences of people with Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
Source: International Journal for Equity in Health, Nov 2, 2011

By J C De Carvalho Leite, F Poland, et al.

[Note: the free full text of this report can be found here http://www.equityhealthj.com/content/pdf/1475-9276-10-46.pdf]

Abstract:
Background: Needs-based resource allocation is fundamental to equitable care provision, which can meet the often-complex, fluctuating needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).

This has posed challenges both for those providing and those seeking support providers - in building shared understanding of the condition and of actions to address it.

This qualitative study reports on needs for equity in health and social care expressed by adults living with CFS/ME.

Methods: The participants were 35 adults with CFS/ME in England, purposively selected to provide variation in clinical presentations, social backgrounds and illness experiences.

Accounts of experienced needs and needs-related encounters with health and social services were obtained through a focus group (n=6) and semi-structured interviews (n=35).

These were transcribed and needs related topics identified through data-led thematic analysis.

Findings:

Participants emphasised needs for personalised, timely and sustained support to alleviate CFS/ME impacts and regain life control, in three thematic areas:

1. Illness symptoms, functional limitations and illness management;

2. Practical support and social care;

3. Financial support.

Access of people with CFS/ME to support from health and social services was seen to be constrained by:

Barriers stemming from social, cultural, organisational and professional norms and practices,

Further heightened for disadvantaged groups including some ethnic minorities.

These reduced opportunities for their illness to be explained, or associated functional limitations and social disadvantages to be addressed through social support.

Participants sought more understanding:

Of bio-psycho-social aspects of CFS/ME,

Of felt needs of people with CFS/ME

And of human rights and disability rights, for providing person-centered, equitable care.

Conclusions: Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME - to be underpinned by research-based knowledge and communication, for public and professional education.

Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights, and disadvantaged groups.

Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.

Source: International Journal for Equity in Health, Nov 2, 2011. School of Allied Health Professions, University of East Anglia, Norwich; London School of Hygiene and Tropical Medicine, London; Faculty of Society and Health, Buckinghamshire New University, Uxbridge, Middlesex; Sports Therapy and Physiotherapy Division, University of Bedfordshire, Luton, Bedfordshire; Postgraduate Medical Institute, University of Hull, Cottingham, East Yorkshire, England, UK.[Email: Fiona Poland f.poland@ucu.ac.uk]

 

[Ember]

It's worth reading the full text. I wouldn't stop at the abstract on this one.

[Note: the free full text of this report can be found here http://www.equityhealthj.com/content...276-10-46.pdf]

 

[Vitalic]

Participants sought more understanding:

Of bio-psycho-social aspects of CFS/ME,

How on earth could you seek to gain more understanding for something that has no basis at all. Why are they not seeking understanding about the genuine cause of the illness? Which would in turn mean more bio-medical research, but I guess they would never recommend that.

 

[Sean]

Ember, that link doesn't work.

Try this

http://www.equityhealthj.com/content/pdf/1475-9276-10-46.pdf

 

[Dolphin]

Participants sought more understanding:

Of bio-psycho-social aspects of CFS/ME,

How on earth could you seek to gain more understanding for something that has no basis at all. Why are they not seeking understanding about the genuine cause of the illness? Which would in turn mean more bio-medical research, but I guess they would never recommend that.

Although I have problems with the "biopsychosocial model", the term bio-psycho-social isn't really used in the same way here. They seem mainly to be referring to the fact that it can affect people in a variety of ways - their biology, how well they can function/social support and relationships and psychologically e.g. from not having support. That sort of thing. But people are probably right to be wary when they see the word.

 

[Dolphin]

I've just finished reading this and found it an interesting and sympathetic piece.

I found the results section of most interest where lots of quotes gave concrete examples.

While I am certainly often able to deal with abstractions, and often finding introductions and discussion sections of interest in papers, I wasn't as engaged by a lot of the other sections in this paper. However, perhaps if I was more focused on this issues I would find them good. Table 2 has potential - at the same time, it would be good to illustrate where the ideas for the problems/solutions come from. And in general, I would have liked more concentrate examples with regard to solutions.

There is quite a lot of talk about ethnic problems. There could certainly be lots of problems in this area. But I think the authors and the patients may be a bit too quick to assume that is an issue in specific instances or at least, they didn't "prove" some of the points e.g. a black woman said she was treated roughly when having an injection and she put it down to her race - from a technical point of view, I'd like an experiment that showed there was a difference due to her race and not some other factor e.g. simply her diagnosis, or even the professional was problematic in this area with quite a lot of patients. But as I said, probably hard to prove. Gender is also mentioned in Table 2 - I can't remember what it said on this (I read the paper over a few days) but based on my personal experience, I'm not convinced being male was a particular advantage to me when attending professionals. Perhaps there are specific areas which are more difficult for either gender.

I would have liked for them to point out that some expert viewpoints can also cause problems. Education was portrayed as the answer but one can have the wrong sort of education. And as the St. Barts Chronic Fatigue service's submission (http://forums.phoenixrising.me/show...raft-NICE-guidelines-insight-into-their-views ) on the draft guidelines shows, not all services want to advocate for patients or suggest to policy makers (i.e. in general rather than for an individual) they should get a lot of support which they can see as counterproductive. Nor does it really touch on the problems exercise/exercise programs can cause (not that it is promoted either).

Here's the concluding paragraph:

In summary, the study has highlighted the damaging
bio-psychosocial effects of living with CFS/ME within a
system which has engendered health and social care
provision which is socially-unsupportive of their specific
needs. Its findings suggest for health practice and future
studies that, as Marmot and Friel urge [1], as well as
acting to understand and manage the illness, creative
responses to inequity should draw on joint ventures
with communities of people with CFS/ME, their carers
and families, health professionals and social policy
makers. Where individuals are affected by long-term,
fluctuating conditions with complex needs, as exemplified
in CFS/ME, health professionals should be especially
prepared to act as advocates for patients in
negotiations with employers, educational and social welfare
organisations to respond flexibly if more equity in
health and social inclusion is to be enabled for these
groups.