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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 (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

STATE BENEFIT(S)APPLICATIONS
TOTAL NUMBER CURRENTLY IN RECEIPT OF STATE BENEFIT(S)
427
98%
TOTAL NUMBER CURRENTLY RECEIVING NO STATE BENEFIT
10
2%

THE TABLE BELOW SHOWS THOSE SOLELY IN RECEIPT OF DLA BENEFIT & THOSE WHO RECEIVE OTHER BENEFIT(S) IN ADDITION TO DLA

WHICH STATE BENEFIT(S) CURRENTLY RECEIVED %
DISABILITY LIVING ALLOWANCE (DLA) 368 86%
(OF THAT NUMBER, IN ADDITION TO DLA, ALSO RECEIVE:)  
DLA + INCAPACITY BENEFIT 175 41%
DLA + INCOME SUPPORT

DLA + SEVERE DISABLEMENT ALLOWANCE

DLA + INDEPENDENT LIVING FUND
  112 26%
75 20%
6 2%

 

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

TABLE C

CLAIM FOR DLA BENEFIT SUCCESS RATE
NOS
%

FIRST ATTEMPT TO CLAIM DLA SUCCESSFUL

152
41%
FIRST ATTEMPT TO CLAIM DLA UNSUCCESSFUL
216
59%
IF UNSUCCESSFUL, HOW MANY APPEALED
186
86%
HOW MANY SUCCESSFUL AT APPEAL STAGE
158
85%
HOW MANY UNSUCCESSFUL AT APPEAL STAGE
28
15%
IF APPEAL UNSUCCESSFUL, APPLIED TO BENEFITS COMMISSIONER
19
68%

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.

AGENCY TYPE

%

BENEFITS AGENCY

38

SOCIAL SERVICES

27

PRIMARY CARE TRUSTS

20

NHS HOSPITALS

13

ALTERNATIVE PRACTITIONERS

57

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

COMMUNITY CARE ASSESSMENT
YES/NO
NOS.
%
HAVE A SOCIAL WORKER/CARE MANAGER
YES
127
29%
       
 
NO
310
71%
HAVE HAD COMMUNITY CARE ASSESSMENT>
YES
195
45%
 
     
 
NO
55%
ADEQUATE CARE PACKAGE RECEIVED
 
YES
77
39%
NO
118
61%
 

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

REASONS
 
NOS
%
LACK OF RESOURCES
69
35%
M.E. NOT A PRIORITY
35
18%
NO REASONS GIVEN
37
19%
OTHER
 
 
54
28%
 

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

HOMECARE SUPPORT REQUIREMENTS
%
Personal Care
44%
Preparation of Meals/Shopping
74%
Domestic Care
>
76%
Social Needs Service
43%

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

OCCUPATIONAL THERAPY ASSESSMENT (OTA)
YES/NO
NOS.
%
HAVE HAD OT ASSESSMENT CARRIED OUT
YES
223
51%
 
     
 
NO
214>
49%
OTA FULFILLED DISABILITY REQUIREMENTS
YES
118
53%
 
     
 
NO
105
47%
WAITED OVER 6 MONTHS FOR OT ASSESSMENT
YES
93
42%
 
 
 
 
NO
130>
58%
          <  

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).

DISABILITY AIDS REQUIRED<
NOS.
< %
HOME ADAPTATIONS: (access ramps, bathroom adaptations etc.)
251
57%
MOBILITY EQUIPMENT: (wheelchairs, stair lifts etc.)
70%
SPECIALIST DISABILITY EQUIPMENT: (adapted beds etc.)
145
33%
DISABILITY SUPPORT SERVICES: (physiotherapy home visit etc.)
43%
 

Although home adaptations and, indeed, all the other categories within the charts 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

It is clear from this section that those suffering from severe ME have very high levels of dependence and physical disability, with real needs for support and equipment such as electric wheelchairs, specially adapted beds, bed-bathing equipment etc. However, access to such equipment seems to be very low and there is a real need to address such issues.

 

SECTION 3  -  CARERS’ REQUIREMENTS

The following section examines a few aspects regarding 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, only 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, a massive 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.

It is obvious from these statistics that many carers feel they are not supported at all by the system and are simply left to cope on their own with an extremely ill person (24/7).

 

SECTION 4  -  HEALTH SERVICES  

A: PRIMARY CARE TRUSTS

This section 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. 

GP HOME VISITS %
NEVER 53
PERIODICALLY 38
REGULARLY 9

 

Of the 58% who were completely unable to attend their GP’s surgery, over half stated that they never received home visits from their GP. Indeed, only 9% reported receiving GP home visits on a regular basis. 

Obviously, we realise that GPs may not always be in a position, or have adequate resources, to enable them to carry out more frequent home visits, but perhaps, the introduction of a district nurse domiciliary service could be a viable option. (ie. for monitoring of the condition, carrying out routine blood tests etc.)

As you would expect with a seriously debilitating illness, and one which leaves the sufferer completely house- or bed-bound, there is a very high level of need for domiciliary visits and a very substantial majority (85%) of the respondents, when asked, felt that an adequately trained multi-disciplinary team approach would be most beneficial to them.

We followed on from this by asking which forms of domiciliary services would be most required. (Refer to Table I). All answers were graded – (1 = highest priority, 5 = lowest priority and 0 = no priority/unanswered). From the table, most felt that GP visits would be most suitable, followed by District Nurse and Consultant visits.

FORMS OF DOMICILIARY SERVICES REQUIRED
1
2
3
4
5
0
DISTRICT/PRACTICE NURSE VISITS
 
23%
11%
8%
8%
9%
41%
GP VISITS
   
51%
12%
5%
3%
2%
26%
CONSULTANT VISITS
 
27%
8%
10%
8%
6%
40%
PHYSIOTHERAPIST VISITS
 
20%
7%
8%
8%
12%
46%
COUNSELLING
 
18%
8%
6%
8%
12%
49%
ALTERNATIVE FORMS OF THERAPY 
 
22%
8%
8%
4%
9%
49%
 

 

REQUIREMENTS FROM SUCH VISITS

Asked about the main requirements from such visits, the majority required GP check-up, although the figures also showed a substantial need for appropriate and helpful treatments, referrals to suitable specialists and advice/support regarding management of their condition.

 

REQUIREMENTS FROM SUCH SERVICES
1
2
3
4
5
0
GP CHECK-UP VISIT
   
52%
9%
5%
4%
2%
28%
TREATMENTS
   
35%
8%
10%
6%
3%
38%
ADVICE & SUPPORT     
   
43%
12%
5%
3%
3%
34%
REFERRALS TO SPECIALIST
 
 
37%
8%
8%
7%
3%
36%
     

It is apparent, from additional notes received by the respondents, that they feel the medical profession, and in this case PCTs, are not properly fulfilling their role, not only by failing to provide the basic medical and physical support required but also by failing to provide the equally vital emotional support which helps alleviate some of the feelings of isolation and neglect experienced by many sufferers.

 

B: HOSPITAL REFERRALS & TREATMENTS

This section looks at various aspects of hospital visits, the problems encountered, and the particular needs of patients with severe ME when attending hospital.  We asked to which particular specialist respondents would ideally like to be referred. (Refer to Table K).

TABLE K

OUT-PATIENT VISITS/SPECIALIST REFERRALS
1
2
3
4
5
0
NEUROLOGIST
   
56%
6%
3%
1%
1%
33%
PSYCHIATRIST/PSYCHOLOGIST
   
4%
1%
3%
4%
10%
79%
ENDOCRINOLOGIST
   
29%
8%
6%
2%
2%
52%
PAIN SPECIALIST
 
 
35%
8%
5%
2%
2%
50%

  

From additional notes received, a significant number felt that referrals to an ME specialist would be most beneficial (not a category we had mentioned by name). Referrals to a neurologist scored next highest, while a very significant majority rated referral to a psychiatrist or psychologist as “0” or placed no mark against the question. It is apparent from this that the majority of respondents regard their illness as a neurological condition (as does the World Health Organisation) and therefore consider psychiatric or psychological referrals, in connection with their ME, to be inappropriate. Of the very small number who did want to be referred to this type of specialist, most expressed the need for emotional support and stress management, suitable for a chronically ill patient.

 

This was followed by asking what the main requirements from such referrals would be. (Refer to Table L).

REQUIREMENTS FROM SUCH REFERRALS
1
2
3
4
5
0
Relevant Medical Examinations/Tests
 
62%
9%
7%
2%
2%
18%
Advice re Management/Support of Condition
58%
10%
8%
5%
2%
16%
Further Investigations by Specialist
 
42%
9%
8%
9%
2%
31%
Sympathetic Treatment/Acceptance of Condition
74%
7%
3%
3%
1%
12%

It is noteworthy that, although high scores were consistently achieved for all patients’ requirements in the highest priority category, (1), the highest scoring patients’ requirement was “Sympathetic Treatment/Acceptance of Condition”. This may seem like a surprisingly basic requirement but, for this particular group of patients, it scored even more highly than medical tests and management of their condition. Its priority is explained in accompanying notes, where many mentioned previous poor treatment and inappropriate attitudes towards their illness from healthcare staff, which not only increased stress but often made their ME worse. 

From this, it would seem that many sufferers’ previous experiences of attending hospital have been negative from the point of view of a general lack of understanding and appreciation by healthcare staff of the difficulties experienced by the severe ME patient. The independent group set up by the CMO (England/Wales) and the Short Life Action Group (Scotland), also recognised and made recommendations that health professionals required further training on how to deal with and treat patients with ME, especially the severely affected.  

As you would expect, patients with severe ME also have a variety of problems when attending hospital referrals.

 We asked the respondents to highlight the main problem areas when attending hospital for treatment. (Refer to Table M).

TABLE M

PROBLEMS RE ATTENDING HOSPITAL
1
2
3
4
5
0
Travelling to Hospital
73%
6%
4%
5%
3%
9%
Lengthy Waiting Periods
65%
10%
7%
5%
3%
11%
Problems Sitting Upright
63%
10%
6%
5%
4%
12%
Consultation/Procedure too Exhausting
58%
8%
8%
7%
5%
14%
Experienced Poor Treatment/Attitude by staff
54%
5%
5%
5%
10%
24%
 

All problems relating to attending hospital were rated highly in the top priority category, (1). The figures below testify that people with severe ME have significant difficulties attending hospital and strengthen the case for special provision. In particular, we call for more frequent domiciliary visits, providing more services in patients’ homes. Other strategies may also help to prevent aggravation of symptoms – such as the provision of a quiet area with a bed so that patients can lie down while they wait.

Serious issues also exist for the sufferer, when receiving hospital treatment as an in-patient. (Refer to Table N containing figures relating to Inpatient Requirements). Again, high ratings were recorded across the board within the top priority category (1). The most prevalent requirement was for staff to be adequately trained to treat ME patients. Also the figures show a great need for special provisions to be made to help eliminate problematic environmental and noise factors; to take account of specific dietary requirements, and for healthcare staff to provide help with personal needs/mobility problems.

 

IN-PATIENT REQUIREMENTS
 
1
2
3
4
5
0
Provision of Quiet Private Room
 
69%
5%
5%
5%
3%
13%
Staff Adequately Trained to Treat ME Patients
78%
7%
3%
3%
2%
7%
Environmental Factors, such as Noise, Lighting etc.
60%
9%
9%
4%
3%
14%
Dietary Requirements   
   
46%
8%
6%
7%
9%
25%
Require Staff to help with Mobility/Personal Needs
55%
9%
7%
5%
6%
19%
 

 

We are obviously aware that hospitals are at present often unable to provide all these facilities or fully meet these requirements. However, given the impact on patients’ health when these needs are not met, we feel it is important to try and work towards this kind of provision. A report by Action for ME (‘Severely Neglected’) found that many patients relapsed in the hospital environment. Worryingly, more patients reported having been made worse than better.

 

DENTIST AND OPTICIAN SERVICES

In order to highlight other potential problem areas, we asked a few basic questions regarding access, or lack of access for severely affected sufferers to dentist and optician services.

28% of those surveyed, said they had been refused a home visit from a dentist, and 20% had been refused a visit from an optician, although a large proportion felt they needed this service (51% required dental home visits and 48% opticians). 68% had managed to see a dentist in the last two years, and 55% had seen an optician.

 

SECTION 4 :  COUNSELLING AND OTHER TREATMENTS

We now move on to the last section of the Report, and perhaps one of the most controversial areas, which examines counselling and other treatments often used to treat the ME patient.

We began this Section asking what forms of counselling (if any) the subjects of the study considered to be beneficial to them as ME sufferers. (Refer to Graph 6). The most popular form of counselling was person-centred, with psychotherapy (a massive 90% considered this to be of no benefit to them whatsoever) and cognitive behaviour therapy (again, a massive 93% considered this form of treatment to be unhelpful) scoring the least.

 HELPFUL  = BLUE              UNHELPFUL       - RED                                                         GRAPH 6

Person-centred
Counselling
54%
46%
Psychotherapy
10
%
90%
Cognitive Behaviour
Therapy
7
%
93%
Stress Management
39%
61%

From previous patient reporting, it has been consistently shown that CBT, especially when it is used in conjunction with Graded Exercise Therapy, has proven to be potentially one of the most harmful forms of treatment. Those in the study considered person-centred counselling to be the most beneficial form of counselling, providing more realistic coping strategies to help them in their day to day lives.    

 

This was followed by questions regarding some other forms of treatment.

(Refer to Graph 7).

HELPFUL  = BLUE                UNHELPFUL = RED

Graded Exercise Therapy
5
95%
Pacing
70%
30%
Alternative Therapies
60%
40%
Symptomatic Care Management
73%
27%
Pain Management
75%
25%

 

By far the most unhelpful form of treatment was considered to be Graded Exercise Therapy (GET) (95% of those in the study considered this form of treatment to be most detrimental to their condition.) This is a finding that may surprise some of you, given the current medical popularity of this approach.  However, these patients’ perceptions are supported by data from previous experience:  of the 39% of our members who had actually used Graded Exercise Therapy, a shocking 82% reported that their condition was made worse by this treatment.  On the basis of our members’ experiences we question whether GET is an appropriate approach for patients with ME.  It is worth noting that some patients were not severely affected before trying GET. Thus, it is not only people with severe ME who may be adversely affected by this form of treatment.

 

CONCLUSION

Awareness of ME is greater now than several decades ago. However, much has yet to be learned, not only about the organic processes involved, but also how to best manage and treat this illness. It is clear from this survey that patients with severe ME still face considerable difficulties gaining access to basic services. More in-depth studies are needed to identify the particular needs of this group of patients and how to recognise and meet those needs.  We must also campaign for more resources to be made available to reduce the gaps highlighted in this report.

 

In the meantime professionals can help by listening to patients and recognising the enormous impact of this devastating illness. Assessments should take account not only of those disabling symptoms common in other conditions (such as difficulty walking), but also of less well recognised but equally disabling symptoms (such as difficulty sitting up, concentration problems, and sensitivity to noise, light, chemicals and movement).

 

In summary, it is crucial to remember that applied care, knowledge and understanding, along with the provision of appropriate support services for this vulnerable group of severely ill and disabled patients, should be of paramount importance to all service providers.

 

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