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Analysis Report by  

25% ME Group 

1^st March 2004 

A large random sample of 437 of our members (66% of our total membership) very kindly and painstakingly completed a Questionnaire recently, entitled "Essential Services for Severely Affected ME (Myalgic Encephalomyelitis) Sufferers". This document is an analysis of the results. Many of these people are very ill and disabled as a result of having severe ME, but they felt strongly enough to help in telling us their experiences. We would like to thank them for their efforts in completing the questionnaire and we hope that the following report will be a useful source of reference to all interested parties.

We are very aware that people with severe Myalgic Encephalomyelitis (ME) - that is people who are house, wheelchair and bed-bound by this neurological condition - often do not receive the appropriate support services they require. Services needed include medical and social care, as well as practical and financial assistance. Without appropriate services, patients’ health and well-being can be seriously compromised. Our aim in the following report is to highlight this lack of services to those in the public arena including MPs, healthcare professionals and Social Services. The intention is to emphasise those areas requiring improvement in order to assist service providers in catering for the needs of this group of individuals.  

_{(Please take the time to read this Report thoroughly. Thank You.)}

We asked some general questions about awareness of benefit entitlement. 58% of the 437 total subjects of the study stated that they were not initially aware of the benefits to which they were entitled and 39% felt that they were not currently in receipt of the appropriate level of state benefits relative to their level of disability. In addition, only 53% felt that the system accepted that their illness entitled them to state benefits.

For the purpose of this report, we focus mainly on Disability Living Allowance (DLA), as this is usually the primary benefit applied for by this group, although we did ask questions about other benefits too.

The following figures relate to those who applied for and (eventually) managed to gain DLA. It is interesting to note that, whilst a high percentage currently receive this benefit, many claimants (59%) were initially turned down.  The vast majority of these were successful on appeal.  We can assume that having to fight for the entitlement to DLA is likely to cause financial insecurity, hardship and stress.  The figures also suggest that the benefits system may be wasting significant resources on appeals, due to initial underestimates of the disabilities caused by severe M.E.

We asked those currently in receipt of DLA if their first claim had been successful, with the following results:

The next question asked which of the following agencies were regarded by those in the study as accepting ME as a long-term serious illness with a high level of disability. Refer to graph below. 

COMMUNITY CARE

Of those who had had a community care assessment, 61% felt that their care package was inadequate.  Those who had not received an adequate care package, were asked what reasons were given for this.

Various different reasons were recorded in the “other” category, such as: “It was felt that Social Services did not understand or accept that the applicant had a high level of disability”, or that “ME was viewed as being a short-term illness.” Some of the more alarming reasons included, “Care package was opposed by the applicant’s Consultant Psychiatrist”, and, “No medical evidence was provided by applicant’s GP to support claim”. Several subjects reported only receiving an adequate care package following High Court Judgements in the claimants’ favour! Some also said that the procedure was too physically exhausting and stressful to pursue, and that the process led to the deterioration of the applicant’s physical and/or emotional condition.

HOMECARE SUPPORT REQUIREMENTS

Highest priorities in this section related to preparation of meals/shopping and domestic care. However, the other categories in this section also showed a significant level of requirement.

OCCUPATIONAL THERAPY

DISABILITY AIDS REQUIREMENTS

Nearly half of those studied had not received an assessment from an OT. Although home adaptations and, indeed, all the other categories within the chart rated fairly high, the greatest need was for mobility equipment. From additional notes received, the greatest demand was for wheelchairs (particularly electric ones) for which, of all the mobility aids, there was the longest waiting time in most parts of the country.

CARERS’ REQUIREMENTS

We asked some questions about the needs of those family members who care for people with severe M.E. This applied to 48% (211) of the total subjects involved in the study. Only 20% of carers had had their needs assessed. Of those who had been assessed, 40% reported that they had received an adequate care package, 48% had not, 7% did not know and 5% were awaiting a decision. Asked if they were in receipt of the appropriate carer’s allowance, only 24% said that they were, 76% were not and 1 person did not know. The final question dealt with whether they felt valued by society as a carer: only 8% stated they felt valued, the vast majority of carers (87%) did not feel valued by society and 5% did not know.

Section Three: Health Services

A. PRIMARY CARE TRUSTS

This section specifically deals with access (or lack of access) for severely affected ME sufferers to primary healthcare services.

We began by asking how many were able to actually travel to their GP’s surgery for treatments, blood tests and general check-up visits. 58% stated that they were completely unable to attend their GP’s surgery and, of the 42% who were able to attend, the vast majority (over 80%) were completely reliant upon carers, friends or family members to transport them to and from the surgery. Of this number, most felt obliged to attend the surgery because their GP would not carry out home visits for ME related matters. 

Focusing attention on those who were not able to travel to their GP’s surgery, we asked how often they received home visits. Please refer to table below.

58% were completely unable to attend their GPs surgery, yet over half of these people said that they never receive home visits from their GP.

Following this, we asked what forms of domiciliary services would be most beneficial. A large majority (85%) felt that an adequately trained multi-disciplinary team approach would be most beneficial.

We then broke this down into various categories and asked people to grade these for importance (1 = highest priority, 5 = lowest priority and 0 = no priority/unanswered). (Please note, only percentage values shown)