Extracts from "The Quarterly" Issue 12

Introduction. As a Life Member of the Lincolnshire Post Polio Network (as well as of 3 ME charities) I was able to attend the event of this organisation for the first time and found it a truly mass gathering of like-minded people with neurological disabilities and of their professional carers. The audience filled two enormous ballrooms and the foyer of a large hotel in Earls Court, London. The Neurological Alliance now represents some 50 charities supporting a widespread profile of chronic neurological conditions which currently affect over 3 million people in the UK. Their disabilities range from brain and spinal injuries and malignancies to stroke, epilepsy and congenital deformity and include conditions with which I am more familiar such as meningitis, MS, Parkinsons, Motor Neurone Disease, ME and the Post Polio Syndrome.

Patients and Professional Carers Working Together. To my astonishment, many of the smartly dressed, well spoken and obviously professional speakers and chairmen revealed themselves to be sufferers or carers of people with these devastating conditions. The impact of their self confidence and achievement was dramatic and gave us all new hope for the future. However, this hope will demand even closer co-operation between patients and professionals if sufferers and carers are to be given the choice and the control which they need over the services they receive (or hope to receive in the future).

The Patient User/Consumer Movement. This relies upon a long and hard won record of success based initially on the efforts of the keynote speaker (a sufferer from MS who was co-founder with Michael Young of the College of Health). She has long struggled to educate fellow patients about the corrosive imbalance of power between doctors and patients and the insidious eroding of patients’ rights within the NHS including the right to second opinion, the tacit withdrawal of the ‘patients charter’ and the insistence upon reliance on random controlled trials (RCTs) as the gold standard of management while ‘quality of life’ is far more important in chronic neurological disease, in children and the elderly.

We were reminded of the current fragmentation of the voluntary sector, their rivalry for meagre financial support, despite the fact that nowadays more funding for research is derived from volunteers than from the government.

Neurological Appointments should be a meeting between equals. There is a lot of excellent practice in the community and, for the third year the MS Society distributed awards for above average performance and initiative to:- a) The Walton Centre, Liverpool, for its education modules on stress management, nutrition lifestyle and prevention of secondary disabilities after diagnosis and hospital discharge. B) Tree Tops Nursing Home, Colchester, for its special research programme which recognises the expertise of patients who contribute to these studies, who educate other patients and who were enabled to attend the conference and contribute to questions from the audience by means of special amplification. Entrance to the Nursing Home proved to be enabling rather than restrictive in the late stages of MS. c) The National Hospital for Nervous Diseases – for its dedication to the emotional and educational needs of newly diagnosed patients. 

Medicine is an Art as well as a Science. The afternoon sessions were devoted to innovative medical practice by Consultant Neurologists of whom we were reminded, we have but 300 in the UK compared with some 10,000 in other European countries of similar size!

1. Colchester – where the Consultant Neurologist welcomes co-operation with support groups. He blames the current 2 year waiting list upon management by medical staff trained primarily in ‘Public Health’ rather than in general medical problems, but has somehow managed to set up efficient NEUROCARE programme for the common neurological disabilities – mainly MS.

   However, it seems that half his workload is derived from ‘medically unexplained’ conditions which do not come within his remit and cannot be helped.

   I very much suspect that the commonest neurological conditions in the UK today (including the late effects of ME and the Post Polio Syndrome) fall within this category! [Editors note – I spoke to this Neurologist later and he said that he would not be able to see Polio Survivors as he knew nothing of PPS and then thanked me for the information that I gave him].

2. Guys and St. Thomas’ and Kings College Hospitals – Consultant Neurologists have developed an MND Nurse led outreach service for long term secondary problems including pain, ventilation requirements, gastrostomy, speech therapy and palliative care.

3. Harold Wood Hospital ME Centre – one of the founder members of the Neurological Alliance, where care for ME patients was initially linked too the pre-existing neuro care programme for Parkinsonism and Tremor. ME, one of the commonest and most chronic neurological conditions in the UK, has a devastating effect on adolescents and is by far the most frequent cause of long term school absence. Many patients are severely ill and house bound or bed bound but, though they can be managed by conventional methods within the NHS, Harold Wood is the only charity which has taken on an in-patient and outpatient service. The cost of this illness runs into millions of pounds but, as yet, there is no NHS provision for patients. Tribute was paid to the early pioneers of the Harold Wood Centre.

Collaboration with a Wider Medical Audience. The evening session included a wine reception to mark the launch of the Neurological Alliance’s new report ‘In search of a service – the experiences of people with neurological conditions’ to which delegates from the 2001 World Congress of

Neurology (held across the road at Earls Court) were cordially invited.

Poster Displays in the Foyer. A special mention must be made of the wonderful display provided by the Lincolnshire Post Polio Network. Despite having no speakers in the main sessions, this was the major focus of attention outside, offering the opportunity to view vivid illustrations of post polio problems, a comprehensive range of literature on the subject and an operative website display. There was also an opportunity to meet and discuss the problems of this illness with Hilary Hallam. As a long term patient she has achieved impressive improvement largely by her own efforts and must be considered one of the most knowledgeable persons in the UK in respect of the management of Post Polio Syndrome – an illness for which no provision has yet been made by the NHS.

Summary. There are a great many lessons to be learnt from this conference in respect of the management of ME and the late effects of both ME and Poliomyelitis which are indistinguishable and may include secondary problems with Parkinsonism. The attempt to set up and to maintain specialised ME clinics has merely served to marginalise the disease and has induced many patients to make long journeys to the few geographically distant centres available, with resultant relapse and deterioration.

Only by means of co-operation and collaboration with other neurological charities can a properly conducted neurological assessment, followed by equal right of access to local rehabilitation facilities for all ME, Post Polio Patients and other similar neurological conditions be achieved in the near future.

 Dr. E. G. Dowsett, MB ChB, Dip.Bact.

Honorary Consultant Microbiologist Basildon and Thurrock General Hospitals NHS Trust and member of The Chief Medical Officer’s Working Party on ME. 47 Drewsteignton, Shoeburyness, Essex SS3 8BA.

MEMBERS MEDIA ITEMS

This member hopes that the suffering that they and thousands of others like them have to endure will receive more attention and support from the media, politicians and health care professionals.

In closing she made the following statement "Is it not time for doctors and social workers to stop using care orders as a back door to enforce medical treatment on children with ME".

Article by Betty Dowsett on Surgery and M.E.

From the Lincolnshire Post Polio Network 

So you are going to have surgery?

(Advice on anaesthetics and pain control for those with M.E.)

Introduction

M.E. results in widespread neurological changes throughout the body, which may deteriorate in the older age groups (for example, some 20 to 30 years after onset of their illness). Patients and carers should always take responsibility for informing, reminding, or carrying printed material to G.P.’s other doctors, surgeons and dentists involved in planning surgery or making referrals. The best person with whom to discuss this will be the anaesthetist on the team. In case of emergency surgery make sure that relatives or friends accompanying the patient are aware of these problems and can speak to the surgical team. This includes dentistry, orthodontic treatment, day stay or inpatient procedures. 

1. Sedative analgesic drugs.

These control pain but not inflammation, e.g. codeine and morphine. M.E. patients are nearly always very sensitive to these due to their effects upon the central nervous system, especially the Reticular Activating Spinal Network. This is responsible for maintaining wakefulness and alertness but is frequently damaged especially in young people at the onset of the illness. Side effects: may include drug dependency, which is not as common as thought when used in a controlled fashion to prevent severe pain, respiratory depression, postural hypotension, dizziness and fainting and possibly the need for increasing dosage as tolerance develops. 

2. Non Sedative analgesic drugs.

These include agents such as Paracetamol and several other drugs freely available over the counter (OTC). They control pain but not inflammation and can have serious side effects if taken in excess, especially upon the liver, and interfere with other drug therapy.

Non Steroid Anti-inflammatory Drugs - e.g. aspirin and Neurofen are sold without prescription but also have serious side effects such as allergy, bleeding, e.g. gastric haemorrhage and interference with other prescribed drugs. 

3. Muscle Relaxants.

These may be required for general surgery and abdominal operations. They work by blocking nervous transmission to muscles. The effect in M.E., where muscles may be weak, wasted or otherwise damaged is much greater than in normal people. 

4. Pain.

This is always a serious problem in M.E. and additional or alternative methods of anaesthesia maybe required, e.g. spinal anaesthetic or local nerve block. 

5. Dysfunction of the Autonomic and Enteric Nervous Systems.

The former may be associated with a rapid or irregular pulse and problems with blood pressure control and the latter with gastro-oesophageal reflux and vomiting. 

6. Respiratory problems.

These can be due to weakness of the diaphragmatic and chest muscles, or to asthma and chronic obstructive airways disease, especially in smokers. The anaesthetist may need to order tests of respiratory function well in advance of any operation. 

7. Muscle, Joint and other Orthopaedic Problems.

These, together with muscle weakness, may affect the correct support of the patient and the positioning of limbs on the operating table in order to avoid damage to superficial nerves.

Summary

The patient with M.E., compared with a normal person, requires less anaesthetic and caution with muscle relaxants, e.g. half the dose at onset with careful increments during operation; more painkillers, but caution with sedative analgesics and more time to recover. Day surgery may be inappropriate and the need for home support after discharge must be considered. Local anaesthetics, e.g. in dentistry, dermatology, and accident departments should be adrenaline free.

With grateful acknowledgement to the Lincolnshire Post-Polio Network Library, http://www.lincolnshirepostpolio.org.uk

Dr. E. G. Dowsett, MB.Ch.B., Dip. Bact.

Honorary Consultant Microbiologist Basildon and Thurrock NHS Trust

Address for correspondence47 Drewsteigton
Shoeburyness
Essex
SS3 8BA.

Members' Experiences of Surgery

Member A

The following is my experience of being hospitalised for a condition requiring surgery.

Last September 2000, after a routine x-ray and following a biopsy, I was diagnosed with cancer requiring surgery. My consultant re-assured me that the hospital understood about M.E. In the weeks prior to admission, I received a large volume of phone calls from friends and acquaintances who had heard the news. Although I appreciated the support, the effort needed to speak on the phone completely exhausted me pre-admission. I also took a reaction to the local anaesthetic used in the biopsy which further drained me.

When I was admitted to hospital, at the end of Sept, I made sure, as advised by the M.E. Association, that I told everyone, i.e. doctors, anaesthetists, nurses, radiographers etc that I suffered from very bad M.E. and I was reassured by their understanding attitude. I made a good recovery from the general anaesthetic and was kept in hospital 1-2 days longer because of the M.E. A friend plus a day centre cared for my husband who is a chronic invalid.

Unfortunately, test results showed that the cancer was a stage further than expected and I returned for surgery in October 2000. The second admission was a nightmare and much went wrong with my care basically because, at the time of my admission, there was a severe shortage of staff. The frequent disturbances of the ward during the night and the day routine of the ward completely wore me out and I was glad to get home for my usual 12 - 14 hours of sleep.

I was given arm exercises to carry out three times a day for 9 months. I found this almost impossible as my arms were so weak with the M.E. I have done what I can. I have, at times, severe pain in my left arm since one of the operations was a lymphectomy.

One thing that has impressed me, is the great sympathy, care and concern shown to cancer sufferers by friends, family and the general public as compared to that generally shown to M.E. sufferers. After I was diagnosed with M.E. about 10 years ago, I was met with hostility. My recent cancer diagnosis has been greeted with concern and sympathy.

While the surgery itself didn’t cause my M.E. to deteriorate significantly, the course of daily radiotherapy treatments has done so. 

Member B

 ME and Surgery

The dilemma I now find myself in is that my Consultant has suggested a further operation. I’m wondering if anyone else has had any experience in which they fared better, perhaps their anaesthetist was aware of the potential effects of anaesthesia on severely affected ME patients. Alternatively, has anyone been adversely effected at their first operation and faired better the second time around?

If anyone would like to contact this person, please email the Web Team on webmaster@25megroup.org

Herb Cures add to Risk of Surgery

from "Metro" Wednesday 11th July 2001

METRO Wednesday 11^th July 2001

Commonly used herbal remedies could cause serious complications for patients undergoing surgery, experts warned yesterday. Dangers included bleeding, heart problems, low blood sugar and dangerous reactions with conventional drugs.

Researchers said doctors should obtain a complete history of any herbal medicines their patients were taking before booking them in for operations. They studied the effects of eight popular preparations – echinacea, ephedra, garlic, ginko, ginseng, kava, St John’s wort and valerian.

Direct effects including bleeding from garlic, ginkgo and ginseng, heartbeat irregularities from ephedra and low blood sugar from ginseng. Reactions to drugs involving kava and valerian included increasing the sedative effect of anaesthetics. Among possible risks associated with St John’s wort was a rise in the potency of a range of drugs used during operations.

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