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25% ME GROUP – SEVERELY AFFECTED ANALYSIS REPORT PRESENTATION GIVEN ON THE 19TH MAY 2004 AT THE LOCKERBIE ME/CFS/FMS CONFERENCE
25% GROUP POWER POINT PRESENTATION
THIS TALK WAS GIVEN ON THE BASIS OF THE REPORT THAT WAS PREPARED BY THE 25% ME GROUP, WHICH WAS ENTITLED:
SEVERELY AFFECTED ME
(MYALGIC ENCEPHALOMYELITIS) ANALYSIS REPORT ON QUESTIONNAIRE
ISSUED JANUARY 2004
GENERAL BACKGROUND Thank you for inviting us to talk to you this morning.My name is Simon Lawrence and I am the Co-ordinator of the 25% M.E. Group. I am also a severely affected ME sufferer and have been for many years, although my condition is a bit better now. Around 9 years ago, I felt it necessary to set up this support group because, although national ME support groups existed at the time, and, indeed, still do, there was no support group primarily set up to deal with the very complex and extreme nature of severe ME. Through the Group, we aimed to provide support and to help alleviate some of the isolation felt by the sufferers of SEVERE M.E. All too often those suffering from this condition become very isolated, often feeling abandoned by health care professionals and social services alike - many of them becoming almost invisible to society, most being housebound, and some being completely bed-bound and unable to care for themselves. The 25% Group wanted them to know that they were not alone and that we understood their frustration and pain. Being a member led group, it meant that we had the necessary understanding and patience to deal with the every day problems faced by many severe sufferers, having gone through the same problems ourselves. We were able to give support and hope to many people who had felt, up until that point, completely alone.
My colleague, Linda Conner, is employed by the group on a part-time basis as Development Officer, and she will be assisting with our presentation this morning.
As time is pressing, I would like to move on now to the main part of our presentation this morning, which is to highlight and discuss the findings contained in our recent report, entitled “Severely Affected ME Analysis Report” based on a Questionnaire which was issued to our membership in January this year. You should all have a copy of this Report in the handout provided.
SEVERELY AFFECTED ANALYSIS REPORT A large random sample of 437 of our members very kindly and painstakingly completed a Questionnaire recently concerning essential services for the severely affected on our behalf and this Report 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.
SECTION ONE – STATE BENEFITS The first section of the Report deals with awareness of and access to State Benefits: We asked some general questions regarding this. 58% of the 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, for short), as this is usually the primary benefit applied for by this group, although we did ask questions about other benefits too. The figures (contained in Tables A & B) show those currently in receipt of State Benefit and particularly those in receipt of DLA, some also receiving other benefits in addition to DLA.
THE TABLE BELOW SHOWS THOSE CURRENTLY IN RECEIPT OF STATE BENEFIT
THE TABLE BELOW SHOWS THOSE SOLELY IN RECEIPT OF DLA BENEFIT
& THOSE WHO RECEIVE OTHER BENEFIT(S) IN ADDITION TO DLA
We asked those currently in receipt of
DLA if their first claim had been successful, with the following
results:
TABLE C
Table C relates 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. In more human terms, having to live with this illness every day is a difficult enough process. As you can imagine, the extra strain and stress caused by having to pursue the lengthy appeal process can be extremely detrimental to the individual involved, often resulting in a severe relapse which may last for several months.
We finished this section off by asking which of the agencies were regarded by those in the study as accepting ME as a long-term serious illness with a high level of disability.
As you will note from the low figures spread across the graph, most respondents did not consider the agencies mentioned to be particularly accepting of their condition. We feel that these figures reflect a lack of real understanding and acceptance of the high levels of disability caused by this illness, and we would suggest that there is still a lot of misinformation out there in the public arena regarding the true extent and nature of this condition. It is true that some sufferers do recover within a few years, but it is also true that a quarter of those affected by ME will become severely affected – often having the condition for years, decades – even for the rest of their lives!
SECTION TWO – SOCIAL SERVICES COMMUNITY CARE
The table below shows details relating to community care
assessments carried out and/or adequate care packages received.
TABLE D
We began this section asking a few questions about Community Care. (Refer to Table D). As you will see from the table, only 29% reported having regular contact with a Social Worker/Care Manager and only 45% had actually had a community care assessment carried out. Of those who had received an assessment, 61% felt that this had not resulted in their receiving an adequate care package.
We then asked
those who had not received an adequate care package, what reasons, if any, were
given. (Refer to Table E). From the figures contained in the table
and graph, a lack of resources would seem to be the biggest problem. However,
the figures show that ME still does not seem to be viewed as a priority against
other conditions such as heart disease or cancer. Some respondents also provided
us with details of other reasons they were given as to why they did not receive
an adequate care package.
TABLE E
Below are noted some of the responses we received:
“It was felt that Social Services did not understand or accept that the applicant had a high level of disability”,
“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”
“No medical evidence was provided by applicant’s GP to support claim”.
Worse still, several subjects reported only receiving an adequate care package following High Court Judgements in the claimants’ favour! Some also reported 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.
HOME CARE SUPPORT REQUIREMENTS For disabled people, Community Care Assessment is the gateway to receiving the necessary support services (unless the individual is in a position to finance their care services). If such an Assessment is not carried out, then the individual has no way to access homecare support services and their personal care requirements cannot be met. With this in mind, we asked some questions regarding Homecare Support Requirements. (Refer to Table F). TABLE F
As you will note from the figures, very high levels of need in all aspects of homecare support were recorded, although the highest figures were marked against preparation of meals, shopping and domestic care. This is hardly surprising given the nature of severe ME, since most sufferers are virtually house, wheelchair and some utterly bed-bound. However, although their care needs are very high, they are still all too often invisible to society and the term “severely neglected” unfortunately applies in many cases.
OCCUPATIONAL THERAPY TABLE G
The figures relating to Occupational Therapy Assessments (refer to Table G), were fairly similar to Community Care Assessments: approximately half never having received an OT assessment at all. Of those who did receive an assessment, just over half reported that it fulfilled their disability requirements but over 40% had to wait more than 6 months for their assessment to be carried out.
DISABILITY AIDS REQUIREMENTS We then asked what disability aids were most required (refer to Table H).
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