For example;. It is important to remember that they probably want to be able to do everything that they could do before they became unwell too, and the added frustration of feeling like they are also letting someone else down can be very upsetting for them. A carers assessment is for adult carers of people who are disabled, ill or elderly. You are entitled to an assessment regardless of the amount or type of care you provide, your financial situation or your level of need for support.
The purpose of the assessment is to consider;. The benefit of having an assessment is that it will identify care and support needs and provide information and advice about services aimed at meeting those needs. To request a carers assessment, you can contact Worcestershire Association of Carers on or Adult Social Care on The ME Association runs a Connect helpline and they are always looking for volunteers to staff this.
A guide for friends, family and professionals by Jacqueline Rayner. Worcestershire Myalgic Encephalomyelitis ME support group :. Cookie Consent The cookie settings on this website are automatically set to not allow cookies, by allowing cookies through you will get the very best experience of this website. For more information on using cookies and how to delete them, please see the privacy statement.
I accept cookies from this site. Enter search here Our Board. Our Services. Work For Us. Our News. Our Policies. Contact Us. Little has been done to draw together the existing data on these expressed needs to support them in managing their illness and maintaining social participation. No protocol for this review has been published. The search was based on ' [text and indexing terms for chronic fatigue] and [text and indexing terms for needs, education, mobility, activities of daily living, legislation, rehabilitation, health services, dysfunction or social behaviour]'.
The full Medline search, on which other searches were also based, is shown in Appendix A. Methodologies included:. Where studies were published by the same author s and where studies included similar numbers of participants the studies were examined carefully to assess whether they constituted multiple reports from a single study.
Where this was the case all of the publications were pooled to provide information on the single study studies were the unit of inclusion, rather than publications. Titles and abstracts, and subsequent full text papers, were assessed independently in duplicate and disagreements resolved through discussion with the review team. A data extraction form was designed to include bibliographic details, study participants, study design and expressed needs with a quotation from the paper and any relevant interpretation by the reviewer.
Original study results were extracted by two reviewers independently. Differences between reviewers' results were resolved by discussion with the review team. Two aspects of the risk of bias were assessed, each aspect being coded as high, medium or low:. Together the group scrutinised the categories identified, and adapted, highlighted and grouped them into core categories linked to a conceptual framework of 'needs'. This data-led analysis was an iterative process: Theoretical insights from one part of the data were applied to other parts allowing new issues to emerge with re-reading and review, enabling the development of a framework to describe the diversity of needs expressed in the set of reviewed papers rather than testing a previously developed hypothesis as in theory-led analysis [ 3 ] Finally the reviewers re-read the statements of needs extracted from the studies to ensure that all were fully represented in the framework.
A total of titles and abstracts were reviewed; full text papers were assessed in duplicate, and 32 studies published in 35 papers were included in this review. The majority of participants were women, but 8 studies included children and young people and many included men. Many studies did not report ethnicity or socio-economic status, but five included people from a range of educational[ 6 , 7 ] and ethnic backgrounds[ 8 , 9 ] or were conducted exclusively with minority ethnic groups [ 10 - 12 ] Nine studies did not report illness characteristics, but those which did indicated that the review covered a range of illness duration.
Almost all of the 22 studies that specified illness severity included those with moderate or severe illness, two suggested a 'range' of severity. Flow diagram of structured searches and inclusion assessment of studies. One study was designed primarily to examine expressed needs[ 17 ]. The framework indicates how expressed needs for managing the illness and social participation can be organised in two dimensions:. In this context aligning perspectives refers to finding ways to adjust their own, and help significant others and health care professionals to adjust their, perspectives on life so that these may become similar or complementary.
Not having a diagnosis posed challenges for relationships with friends, colleagues and relatives[ 20 ] People struggled to make decisions about which people could be given how much, and what type, of information about their health, selecting symptoms that appeared to have greater legitimacy. They worried that it would not seem credible to blame fatigue before a diagnosis was established [ 21 ] This sense of living with a mystery illness, lacking legitimacy, further compromised participation in many areas, such as family, work, leisure, health and social care.
A diagnosis gave a name to their condition, opening a gateway for communicating needs, accessing support services and learning about their illness [ 9 , 14 , 17 , 18 ]. Recognition of expressed needs by service providers was perceived as crucial to align perspectives and receive care needed to manage and gain control over their lives. In such situations they perceived themselves to be seen as 'hypochondriac', 'malingerers' or 'troublemaking'[ 5 , 16 , 26 ]. Disbelief and lack of empathy by health care providers emerged as common experiences and carried the threat of receiving only psychological treatment or not having their needs recognised as legitimate.
This appeared to further compromise access to health and social care, and frequently led to a cycle of chaos. Many reported leaving a doctor's office in tears, knowing that they were very sick, but having no way to convince others about the legitimacy of their illness[ 5 , 11 , 14 , 19 , 22 , 24 , 27 - 31 ] Even in cases of severe pain or disability, people were told there was nothing wrong with them[ 16 ], " I found it quite insulting" [ 26 ].
The need to be treated as a whole person with a body, mind and spirit was another frequently unmet need. The lack of recognition of this need was especially serious for the severely ill, where their condition constrained their ability to communicate and take control of the management of their illness. People reported being " treated like a non-person "[ 5 ].
One woman, bed-bound for twenty five years with hypersensitivity to various stimuli, was not recognised as rational or aware: "' Your wife's a vegetable' one helpful doctor shouted on the phone as Jesse [her husband] sat next to me six inches from my ear. It wasn't at all true But on the outside, I could have been mistaken for a head of broccoli.
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I was almost completely locked in "[ 16 ]. Lack of respect for, or belief in, people's self expression of health needs, was a major problem for those who were severely affected, disadvantaged or from minority groups. For example, a woman with terrible abdominal pain was not taken as a medical emergency with legitimate call on resource: " Why was I having to act as my own medical spokesperson? What if I were too weak to talk?
What if I were intimidated by the hospital because I was less well educated, or poor, or black in a sea of non-black higher authority, or English was my second language? Who would be my advocate then? Weisstein[ 16 ] reported: " I resisted going to the hospital, even though it was clear to me that something was horribly wrong. Every interaction and procedure in a hospital is fraught with terror: will this be the final push over the brink of 'post-exertional malaise'?
Although most reported experiences within the health and social services were negative, some people described examples of good practice. Support and understanding from family and friends was considered vital[ 14 ], and lack of social support was identified as a perpetuating factor of fatigue severity and functional impairment[ 32 ].
He understands and that has been very supportive "[ 26 ]. Although health professionals were expected to facilitate positive attitudes of family and friends, some doctors caused others to dismiss symptoms leading to lack of support from family[ 19 , 30 ]:" When my husband comes home from work, he always says, 'Why are you sleeping all the time?
The doctor says there is nothing wrong Some reported that medical knowledge acquired through friends' searches and emotional support helped them break a cycle of social withdrawal and disapproval,[ 5 ] whilst others offered doctors their own diagnosis[ 5 , 25 ] Discussions with, and feedback from, doctors during diagnosis helped people make sense of, and manage, their illness[ 14 ]. Health professionals conveyed useful information when listening and discussing available treatments and by providing information about where and how to find adequate care[ 19 ].
Equally important for many was information about, and help with, financial support. This need was vividly expressed, since for many " their finances were severely strained "[ 6 ] due to reduced job opportunities for themselves or their family carers and additional costs of support. Financial limitations in turn further limited social participation as many social activities are expensive. Accepting and learning to deal with limitations and changing lives could impose great challenges, which appeared to vary greatly between individuals and in differing periods of the condition.
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Disruption ranged from being able to maintain activities of daily living, employment, education and communication only at the cost of much effort and compromise in participative activities, to catastrophic limitations, as people found themselves in a wheelchair, housebound or bedbound. One man reported that " I had to wear a light-blocking mask over my eyes in a darkened room at all times. Nurses had to feed me. They had to whisper if and when they talked to me. This was experienced as frightening, since well-being depended on carers to identify and respect their needs.
Accepting help and equipment, such as use of a dishwasher, a walking stick or employing a cleaner could therefore also pose a challenge[ 35 ] For others, befriending services[ 17 ], advocacy[ 16 ] and learning self-advocacy as part of independent living training proved helpful[ 9 ] As equipment and others' help could be seen as a badge of disability, they could pose difficulties for self-image and sense of independence despite being practically useful. On occasions " even sitting up in bed' could become too difficult "[ 14 ] and a small increase in physical or mental activity could cause relapse " with a vengeance "[ 18 ] Rest and activity reduction could bring symptom relief[ 15 , 18 , 22 , 35 , 36 ], but was experienced as challenging and difficult to achieve[ 15 ] and often only brought temporary relief[ 18 ] Planned rest periods were important for many, including this young person: " Sometimes I don't feel I need to rest, but I still rest because in the past I haven't felt I needed to rest, but then the next day I was really tired and it took longer for that to go" '[ 33 ].
More than Tired: 3 Ways to Explain What Chronic Fatigue Is Really Like
Finding meaningful occupation within the confines of the illness was important " I certainly couldn't do anything like knitting. I couldn't concentrate on a pattern Eventually, I thought I'm fed up with just sitting watching television doing nothing, so I took up tapestry" [ 26 ]. Adjustments were made by routinely appraising how successful their coping initiatives had been, in the context of self-knowledge and the perspectives of significant others.
While activity-rest balance is important, it needs preparation and recovery time, making planning complex[ 15 , 22 ] Overdoing exercise was " terrible, it makes me feel really ill.
I didn't like being pushed and hated the idea of walking everyday, but it worked "[ 27 ]. Impairments and activity limitations affected people's ability to maintain previous roles: " you go through the grieving thing; it's the death of a whole lifestyle "[ 29 ] Losses of multiple aspects of social participation seemed so painful that some people made huge effort to maintain their informal social life, work and educational roles[ 24 , 29 ] Leisure was an important need, often sacrificed to enable participation in employment and education, or as a direct consequence of impairments, economic disadvantage and social isolation.
As relationships changed with friends, family and work, dealing with separation from former lives meant having to reassess and prioritise those relationships which were most supportive[ 7 ]. Outside the family, education was the major focus of social participation for many young people. Rarely attending school, some reported having lost connection with friends and teachers[ 23 ] Home tuition, a common alternative[ 10 ], allowed a flexible schedule of learning within the limits of their condition, but reduced social participation at an important stage of social development. Although intensive work required by school activities worsened the health of some children, others could ignore this effect, at least in the short term: " I may think I am going to go into school so I may as well try and feel well "[ 33 ] For other young people, school meant not having their needs acknowledged, being discriminated against and bullied by peers and educational workers who did not understand the complexity of their illness, considered them malingerers or lazy.
School for children, and jobs for adults, were signifiers of living 'normally'[ 24 ], providing purposeful activity, an opportunity for social interaction, a sense of achievement, self-value and social recognition, income and social security[ 7 , 29 ]. However, needs stemming from work and education were substantial, posing difficult choices. Pacing work, by resting when fatigued, often meant taking work home to get it completed, and stressful decisions had to be made about disclosure; expectations of stigma made some conceal their illness[ 24 ] However, in a supportive environment, careful disclosure seemed helpful: " They were very good and arranged a room with a bed in for me In the absence of adequate social support, the effort of maintaining employment raised stress, compromised family roles and leisure activities or exacerbated the illness[ 36 ] Decisions therefore had to be made about who to disclose to, the extent of disclosure, and how far to limit activities[ 24 ] Others, severely affected by impairments, were discharged from their jobs when people learnt about their illness, or could not cope with working demands[ 12 ] - some " broke down crying For many that meant their jobs "[ 29 ] Consequences included loss of earnings and radical lifestyle changes such as moving home as income reduced[ 15 ] Others lost access to recommended treatments as they could no longer pay[ 37 ].
Living with chronic fatigue: How I wish my friends would treat me
The review has shown that the lack of recognition of needs and poor support from the health and social systems further compromise socioeconomic status, activities of daily living, social participation and personal development, thereby exacerbating the impact of the illness in their lives. This may mean that some important needs may have been missed in the reporting.
However, whilst the included papers were often not primarily designed to examine needs, and used diverse methodologies, most provided some scope for participants to express their own issues. The conceptual framework of needs developed by data-led analysis enabled the diversity of needs expressed in the set of reviewed papers to emerge, and also facilitated the synthesis of studies that drew on a range of theories and approaches that were not all directly comparable.
While some studies explicitly reported the inclusion of disadvantaged socio-economic groups and ethnic minorities, none of the studies examined their specific experiences and needs. The backgrounds of researchers inevitably colour their view of the material they work with, and this is true of systematic reviewers as well as primary researchers. Systematic review methodology was used to reduce some of the biases that reviewers pre-conceptions can create such as partial inclusion of material depending on how well it resonates with pre-conceived ideas of the results or uncritical inclusion of only partially valid study conclusions.
The review has not examined the validity of the expressed needs of people with CFS. The importance of financial support, and the difficulties in obtaining that support in the UK, have been recently highlighted in the Action for ME Welfare Reform consultation survey carried out in October The review has also shown that being listened to, believed, understood, respected and encouraged in a non-judgmental manner by people who know about their illness underpins almost all needs for support.
Addressing and managing such needs is essential to both the collaborative process of re-building lives as well as in limiting the burden of the illness on carers and local health and social services. LH carried out the searches, and MdLD. LH submitted the review for publication.
Abbot estimates that a quarter of ME sufferers are housebound and some bedbound. She is now 24, remains in pain, sensitive to noise and light, and leads an isolated life. More trials are needed, and the Medical Research Council says that two or three further studies will be completed within three months, though it is possible that the virus is not causative but a passenger. People who are severely affected by ME are terribly neglected. First, there is a need to find out how many people have the condition, because only then can their clinical abnormalities be assessed and effective health services planned.
Third, there is a need for trials of potential treatments. Shepherd points out that the impasse that surrounds ME is partly caused by the difficulty in defining it.
There is piecemeal research going on that is not taking account of the links that are probably there. The MRC is ready to commission more research on ME, he says, but the stigma and scepticism associated with the condition do not make it an attractive option for top quality scientists. Nicola Warner knows that her condition has limited her experience of independent living but, despite a relapse when she was 20 and periods when she has contemplated suicide, she holds on to her ambition of becoming an actress.
By limiting herself to achievable goals she has been stable for the past year and has written a novel. Her next goal is to get it published. You can download leaflets and buy gifts from our website shop or click the image below for our 8-page order form. Details of who to contact if you need support or information. Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm. Calls cost the same as other standard landline numbers starting 01 or If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.