Leger ME Draft Helpline Guide.

I am the first contact in the group’s helpline. While I have been doing this for a number of years I feel that now that it is time to expand the service and involve other members trained to deal with the issues involved. What follows is an outline based on my experience. It is published in Pathways for two reasons. Firstly as a consultation exercise for which I am inviting comment, criticism or observations, and secondly as the information for our members.

With our M.E. Helpline there are four main groups of enquiries:-

1) Without a diagnosis, possibly suspecting M.E. As with group policy, these people are always given information and referred to their doctor for a diagnosis.
2) Recently diagnosed. These people should have been seen by a consultant to give definite diagnosis.
3) Mature cases. These are when the condition has stabilised after several years, and clients have gained the knowledge to manage their case.
4) Miscellaneous health or professional enquiries, press etc.

All these groups have differing requirements. Based on this, and information given by members in the recent membership survey, I have drafted a set of guidelines which follow:-

First Contact

Before completing questionnaire: Establish if the person concerned has a diagnosis of ME, PVFS, CFS or FMS given by a qualified doctor.

If no diagnosis, then refer to G.P. Provide G.P. information sheets.

A client in this situation may join the group as a ‘Client Awaiting Diagnosis’. Remind that part of the diagnosis criteria involves a six month wait. There is no single clinical test for M.E. The diagnosis is one of exclusion and, it is quite normal to have many ‘negative’ results to tests that a doctor may carry out. The best treatment for M.E. in the early stages is rest. There may be problems from school or employers becoming impatient and pressurising for answers which are not there. In the case of schools there may be special needs. In the case of work, advice should be given to contact the trade union or other professional adviser. On no account should the client terminate their employment as they could lose money and state benefits.

If the member has a diagnosis, fill out a questionnaire. The point of the questionnaire is to provide a structured approach and to ensure that the client gets all the help and support available.

The following are specific points:-

1) Name, Date of Birth, and Gender. If the client is a child work with the parents. If the client is too ill to interview work deal with the carer or next of kin.

2) Marital Status. A high proportion of adult clients may have marriage problems or be separated. There may be problems especially if the women has M.E. Refer to another agency or a marriage guidance service.

3) Year of first ill health. This is important because many clients have a long period of ill health prior to diagnosis. There may be work or home related problems which can be attributed to undiagnosed M.E. in retrospect.

4) Year of first ‘fatigue’ diagnosis. This is important for statistical reasons. If the client has been ill for a number of years the chances of full recovery are poor. Clients with a diagnosis of less that a year have the best chance of recovering. Almost all patients recover to some degree.

5) Diagnosis ME / CFS / PVFS / FMS. CFS is given to clients of the Leeds clinic. FMS clients have physical problems. The exact diagnosis is often an administrative issue and depends on the speciality of the doctor and district policy. Different doctors may give a different diagnosis to the same patient.

6) Diagnosis Given by G.P./ Consultant / Hospital Clinic / M.E. Clinic / other
It is important to know if a consultant level diagnosis has been given. If not this could result in problems with school, DWP benefits, work and subsequent attitudes to the client by other health workers.

7) Any other co-existing major health problem? This is important because the effect of M.E. has to be taken in context. It may not be the most serious illness a person suffers and may be incidental to other more serious life theatening conditions. Fear of adverse experiences has made many clients delay other important medical treatments, and be reluctant to seek other medical help. It may delay recovery after an operation.

8) State of illness now is Acute onset / Chronic / Recovering / Improving / Rehabilitation / Fully Recovered. This is important to gauge the needs of the client and the stage of the illness. Clients should have been seen by a consultant early on and receive constant supervision of their G.P. Clients should use NHS services and not seek alternative or other treatments until their condition is stable as this may mask other problems. This usually occurs after 18 months to two year after diagnosis.

9) Source of care Hospital / Private Doctor / NHS doctor / Therapist / Alternative. All patients should have a diagnosis confirmed at consultant level. The G.P. should review their case at least once a year or if new problems occur. Therapists generally have more time for patients than doctors. Patients should beware of information from none medical sources, especially the internet.

10) Type of Care Drugs (Pain Killers) / Drugs (Antidepressant) / Drugs (other) / Herbs /alternative. Painkillers NSAID and &compound Opiates may help with pain control, but TCAD Antidepressants, Neuroleptics or TENS devices may be needed in some cases. Refer to doctor or local pain clinic. TCAD’s are really the only effective drugs for symptom control. M.E.’s are sensitive to high doses of TCAD’s and may suffer side effects in ‘normal doses’. Most G.P.s don’t know this. Many doctors who treat M.E.s recommend starting on the very low dose and working up. The most popular are Amytripyline or Trimipramine. Recent medical literature suggests that Dothiepin is associated with log term heart disease. We have found that most M.E.’s suffer side effects from Prozac or Seroxat. The expertise to treat M.E. is found mostly within the private clinics outside the NHS. In all cases refer back to doctor with information.

11) What is your mobility limit unaided ? Bed / Bedroom / Home / Home / Garden / Street / Locality/ Town / Unlimited. This gives an indication as to whether the client should apply for DLA Mobility and a Blue badge.
12) Do you use a mobility aid? None / Stick / Scooter / Wheelchair/ Car other
Sometimes doctors underestimate the need for help, particularly wheelchairs.

13) Do you need help with Personal Care? None / Occasionally / Sometimes / Most of the time / Always. This will give an indication as to whether a client should apply for DLA personal care and whether domestic or personal help is needed. Refer to social services.

14) Are you able to Work to earn money ? Not at all/ A Few Hours / Part time/ Full time. Does provide a indication of possible employment problems.

15) Do you have your own income? Private pension / Work pension / Wages / Family. This establishes whether an occupational pension is possible. There may be difficulties. May indicate unclaimed state benefits such as AA and ICA.

16) Do you receive State benefits ? Incapacity Benefit / SDA / DLA (care) / DLA
(Mobility) / Jobseekers / Income Support. Most clients should be claiming a sickness/income benefit and a DLA.

Subsequent Sessions.

Common Problems.

1) Unsympathetic doctor. If the doctor patient relationship has broken down then the best thing is to change doctors. It may be possible to see another doctor within the same practice. The best doctors for M.E. usually have a full list. A private G.P. is an alternative, but all treatment and medicines will have to be paid for. A doctor who is hostile or doesn’t believe in M.E. should be approached directly and given the appropriate information.

2) Refusal of State Benefits e.g ICB & DLA. Clients should not fill out the forms themselves but be assisted by someone trained to do so. Generally the fault lies with the client mistating their case or, the examining doctors’ report. Usually a tribunal is the only solution. We refer on to other agencies as we do not have the expertise or resources to handle these cases ourselves.

3) ‘Cures’, ‘Herbal Beverages’ or alternative treatments. The only effective treatment for M.E. is rest. There are no proven licenced medicines that cure M.E., and any treatment offered can only offer symptom control at best. Some treatments offered in the private sector do help but carry risks. This should be only done under the supervision of a doctor.

4) Driving. Usually car licences are no problem but HGV and PSV licences are. The DVLC medical section should be informed. Usually there is no problem. M.E.’s who can drive find an automatic car with power steering helpful to overcome fatigue & concentration problems.

5) Difficulties with Social Services, Schools etc. Very often the problems are caused by inaccurate information being given to the agency concerned by misinformed medical advisers. These need direct intervention to the agency with assistance from other organisations.

Non Specific Problems:-

The G.P. and/or Health professional must be involved at all times. Clients should be referred to the appropriate organisation to deal with their problems if the problem is not within our objectives.



Doncaster September 2001 Membership Survey.

Here is a summary of the results from the 56 entries returned. For clarity I have rounded the data. Some data sets will not add up to 100% because of rounding or multiple field entries. A similar survey took place in Leeds in 1998. Generally our figures are similar with one or two exceptions.

Average age of members: 45, (S.D. = 15).
Average time since Health Breakdown: 10 years (S.D. = 6.2).
Average time since Fatigue Diagnosis: 6 years (S.D. = 4.38).
S.D. = standard deviation, a standard statistical method for assessing the spread of data. This means that most of our members have been ill for 10 years, and had to wait 4 years for a diagnosis. The situation is getting worse as the 1997 survey shows a 2½ year wait for a diagnosis. The Leeds figures are about two years. Totally unacceptable!

Sex : Male 21% Female 79%:
Typical result following national trends.

Marital Status: Single 23%, Married 48.%, Divorced 20%, Widowed 4% Minor 2% & with Partner 2%.
These are roughly in line with the Leeds survey.

Diagnosis: C.F.S. 43%, F.M.S. 9%. M.E. 56%, P.V.F.S. 25%. Shows that CFS has not been universally accepted as a name for the illness.

Diagnosed by: Consultant 45%, G.P. 55%, Hospital Clinic 9%, M.E. Clinic 20%, Paediatrician 5%, Private Doctor 10%.
Most members see more than one doctor. The 20% with a diagnosis from a M.E. clinic is low compared to a similar survey in Leeds suggesting the need for a local M.E. clinic. In Leeds only half of the cases were diagnosed in the M.E. clinic.

Other Health Problems: Adrenal Dysfunction 2%, Allergies 4%, Arthritis 9%, Asthma 4%, Crohn's 2%, Depression 4%, Diabetes Type 2 2%, Eyesight 2%, Food Intolerance 2%, Gastric Reflux 2%, Hearing Impairment 2%, Hypertension 2%, Hypoglycaemia 2%, Lymph Nodes 2%, Migraine 2%, Muscle/Skeletal 2%, None 48%, Oestrogen Low 2%, Osteoporosis 4%, Sarcoidosis 2%, Scleroderma 2%, Thyroid (low) 15%, Thyroid (high) 2%, Ulcerative Colitis 2%,. N/a 6%.
Less than half have another major illness, and anyone suspected of M.E. should be screened for other illness, especially thyroid conditions.

State of Illness: Acute Onset 9%, Chronic 45%, Recovering 16%, Improving 25%, Rehabilitation 4%, Fully Recovered 2%.
Does show almost all of our members are ill.

Source of treatment: Alternative 9% ,G.P. (NHS) 77%, Homeopath 2%, Hospital 34%, M.E. Clinic (NHS) 5%, Private Doctor 29%, Therapist 16%,. N/a 4%.
Nearly 30% seeing a private doctor shows the NHS is not providing a proper service. This is low compared to feedback from the helpline. Also, only half those diagnosed by the Leeds clinic are being treated there; the other half are discharged to their G.P.

Type of treatment: Acupuncture 2%, Antifungals 4%, Antihypertensive 4%, Antiinflamatories 2%, ,Antispasmodics 2%, Aromatherapy 4%, B12 Injections 2%, Diet (Antifungal) 6% , Drugs (Analgesic) 61%, Drugs (Antidepressant) 45%, Drugs (Other) 27%, EPD 4%, Herbs 5%, Homeopathy 2%, Magnesium Injections 2%, Multivitamins/Minerals 15%, Osteopathy 2%, Reflexology 4%, Tens 4%, Thyroid 9%, No answer 1%.
Use of multivitamins lower than expected. Surprisingly more painkillers than antidepressants. 15% have a low thyroid, but only 9% are treated. May be a problem.

Mobility Limit: Bed 2%, Bedroom nil, Home 18%, Garden 14%, Street 13%, Locality 35%, Town 11%, Unlimited 7%.
About half, 44% are restricted to home.

Mobility Aids: None 54%, Car (Automatic) 7%, Car (Manual) 4%, Crutches 2%, Orange Badge 4%, Scooter 5%, Stick 32%, Wheelchair 18%.
About half need no mobility aid this corresponds to roughly the mobility limit data.

Personal Care Help: None 38%, Occasionally 25%, Sometimes 21%, Most Of The Time 5%, Always 11%.
National groups say 25% are severely disabled.

Work and Earn Money: Not At All 79%, A Few Hours 5%, Part Time 9%, Full Time 7%, With Overtime nil.
Most people cannot work, but a few can, and the reason why some don’t is that there may be in benefit traps. Compared to a similar survey in Leeds the figures are about the same.

Private Income: Business nil, Investments 2%, Member of Family 32%, Private Pension 5%, Wages 16%, Work Pension 30%, N/A. 21%.
Half the members are living with a partner, but only a third received financial support.

State Benefits: Attendance Allowance 2%, Council Tax Benefit 2%, DLA (Mobility) 38%, DLA (Personal Care) 27%, Incapacity Benefit 29%, Income Support 23%, Jobseekers 2%, None 18%, Severe Disablement Allowance 9%, State Retirement Pension 13%, Statutory Sick Pay 2%.
The Leeds survey gave 77% claiming Incapacity Benefit. This suggests that there are many members are not claiming benefits they are entitled or that they have been denied this benefit. The number claiming Council Tax Benefit is lower than expected.

The committee agreed that the information will be a valuable tool in our campaign for better services. As such it was agreed at a committee meeting that the survey will be repeated or ongoing. This will give the necessary feedback as to if things are getting better or worse.

We will use this report as a lever to campaign for better services in South Yorkshire.