The UK Chief Medical Officer
1998 - 2010

A Testament to Failure

 

 

 

 

 

Above all others the office of the Chief Medical Officer in the UK ought to be there to protect the public. It says just this on the Department of Health web site.

The outgoing CMO, Sir Liam Donaldson, has presided over the health of the nation during a period for which better science has been available, more funding has been provided to the National Health Service and where it has been entirely possible to begin treating some sub groups of ME patients with treatments which could alleviate or remove the symptoms of ME.

The CMO Working Group of 2002 produced recommendations yet not one of those recommendations has been achieved (click here). Ironically he was knighted in the same year.

Sir Liam Donaldson's biography states that he "regularly gives keynote addresses at conferences in the United Kingdom and around the world" - yet he has declined to speak or attend at each of the five International ME/CFS conferences organised and hosted by Invest in ME, all of them taking place just a few hundred metres from his office in London.

 

The fact that nothing has changed during this twelve years for people with ME and their families leaves the outgoing Chief Medical Officer in a position where failure is, and has been, an acceptable option.

Our description of the performance of Sir Liam Donaldson as Chief Medical Officer was made in June 2008 [Accountability - The CMO - A Time for Change - click here] - where we described the performance of Chief Medical Officer of the UK as ineffective, lacking in leadership and unwilling to engage with ME patients or their carers who are crying out for change.

 

The story below could be used to describe the situation in the UK experienced by many people with ME today. In fact, this was written 10 years ago - near the beginning of Sir Liam Donaldson's tenure as Chief Medical Officer.

This story illustrates the failure of a nation's Chief Medical Officer - a Testament to Failure.

Submission - to the Chief Medical Officer Working - Party

on Myalgic Encephalomyelitis

The NHS and chronic, severe and deteriorating M.E. 2000.     7.06.2000

These are some points from a person with M.E. who has had the illness from a moderate form to a severe form over a very long time. She has quite a wide experience of the National Health Service and has met with various responses during this time.

I am female, 43 years of age, single and have been living with Myalgic Encephalomyelitis for 20 years.

During the first 8 years of my illness I completed my studies, and worked as a teacher. I retired on health grounds at the age of 30 years.

I was housebound for the next 6 years and I have been 100% bed bound and receiving 24-hour care for a further 6 years.

I am very severely affected and some of my symptoms include: -

  • hyperacusis, photophobia, severe Multiple Chemical Sensitivity,

  • food allergies and intolerances (also very severe), hypoglycaemia,

  • extensive erosions of the stomach lining, palpitations,

  • poor adrenal function and hypo-thyroidism in addition to

  • being very restricted in my ability to move in bed and becoming very ill if moved about by others.

  • I cannot stand; or hold up my head unsupported.

  • My muscles are very weak and I experience a lot of pain.

  • I have prolonged nausea and dizziness.

  • I am unable to speak for long periods at several points in every day and use a Voice Output Communication Aid to convey my needs.

I must work hard every day to continue to live within these extreme limitations and the sensory deprivation imposed upon me by them.

 

I want to speak today about some areas of concern that I have encountered in relation to the National Health Service's responses to a young person presenting with severe M.E. symptoms. I have tried to restrict my points to purely NHS issues but as you will hear, it is very often the interface between the NHS and other service providers that is very problematic for people trying to live with M.E.

If for example General Practitioners do not believe in your illness and won't credit you with the need for certain services, this will make it virtually impossible for other service providers to get involved as a referral must be in place first.

I would like to list just a few of the representative problems. Where longer anecdotal evidence is included it is with the single purpose of hoping to curb inappropriate practice to people with M.E.

The first area of difficulty I encountered was that no one could identify what was wrong with my health. One of my very first symptoms was extremely painful shoulder joints. On waking my shoulders were so stiff and sore that it would take 20 minutes of incremental movements to move them enough to push off the duvet. My arms were very weak and would also `dislocate' very easily.

My GP advised me to "Give up racquet sports and exercise to improve your general fitness".

This was disastrous and I think has consolidated the condition.

I was given steroid injections directly into the shoulder joints and told, "we don't know how steroids really work but they can reduce inflammation in some cases". I had more pain and terrifying hallucinations. I was also prescribed many different and powerful anti-inflammatory drugs associated with rheumatology and feel these may have caused the damage to my stomach lining.

In addition to the steroids and anti-inflammatory drugs  I was given high doses of the contraceptive pill for severe menstrual problems and told it would all improve when I had a baby. And in the same year began a course of daily antibiotics, which lasted for two years, for secondarily infected acne. I was also prescribed temazepam, which caused blinding headaches and vomiting, at low dosages.

These were all the efforts of kindly and non-judgemental GPs who were trying to help but sadly lacked information.

I think the NHS is actually spending a lot of money making people with M.E. more ill.

 

The first diagnosis of my muscle and joint pain by a rheumatologist was "hypermobility". I was told that my joints hurt because they were "over-extending", and that when my skeleton finally stopped growing the joints would tighten up, be less mobile, and they'd hurt less.

I should just go home and wait until I was 24. (That was 20 years ago and I am still waiting for the pain to lessen).

The rheumatologist ended the consultation by calling in all the student doctors and saying: "She's hypermobile" – and forcing me to bend over backwards into the crab position saying:

"Look, she can say goodbye to herself coming!"

My back was very tender and painful and I couldn't bend forward properly without pain for weeks.

During the first 8 years when I couldn't get a diagnosis I was trawled around 4 rheumatology departments, 3 general physician outpatient departments and finally 2 psychiatric assessment units. All of which was completely inappropriate for me and a huge waste of NHS resources. In that time I experienced a lot of hostility, anger and disbelief (from health care practitioners). I was also humiliated and, as I was quite young, found this sort of attack on my personality very, very undermining. I was also a single person with not a great support network and these sorts of accusations about whether or not I was ill were really disturbing, and caused me a lot of distress.

I began needlessly examining my personality and wondering if I had some great flaw within, which I ought to look for and resolve, whilst still getting more and more physically sick. This was a really upsetting, worrying and disturbing episode in my life lasting almost a decade. I didn't know how to go forward with my life when I knew something was dreadfully, dreadfully wrong. My arms and legs weren't working: I went to bed one night and when I got up the next morning they weren't working like they ever used to. There was a sense of dis-ease in my body that I'd never experienced before and yet I still had to proceed as if nothing was wrong.

When I finally did get a diagnosis it was only through travelling to a GP who had 40 years of clinical experience of M.E. I couldn't get a diagnosis locally.

I'm sure the lack of an accurate diagnosis is no news to most people listening. I would, however, like to emphasise that, even after 8 years, when you finally receive a diagnosis it's not much use to you. It is a great relief to have an explanation; and confirmation of what you've been dealing with.

However, if every health professional you subsequently meet – be that for acute care in an A & E unit or resources from a wheelchair assessment advisor – if every health professional you meet then doesn't believe in M.E. it's of very little practical value when you seek services. Worse than that, it can actually be detrimental to the service user–service provider relationship to mention that you have this condition.

Once the M.E. diagnosis comes up, all the negative responses ensue.

 

Having exercised and worked through the illness for 8 years I then had to give up my career and retire at the age of 30. At that point I needed a wheelchair as I couldn't walk about and wanted to get out of the house. But I was only allowed to have a manual wheelchair. As my arms were more severely affected than my legs and I was living alone and had no one to push me it was useless. I was told I would only be allowed to have an electric wheelchair when I was completely incapable of walking. Now I am completely incapable of walking, I'm too ill to go in a wheelchair of any kind.

Concurrently with these mobility problems I found I was unable to prepare and cook meals, shop, bathe myself and clean my home. My GP was very supportive of my own appraisal of my difficulties and made an immediate referral to Social Services. I was offered 6 hours of home-care per week. Unfortunately lack of understanding of M.E. by this service-provider entailed this assistance only being made available to me before midday. As I was too ill to have anyone in my home until late afternoon I was only able to take up 2 hours service provision per week. Consequently, I often went to sleep ravenously hungry at night as I couldn't get to the kitchen and lost almost 2 stones in weight without realising. I was restricting my fluid intake to almost zero because I could not rise from my bed to go to the bathroom. Female urinal bottles (and someone to empty them!) would have been a lifesaver in this situation.

Years later I learned that home care was available later in the day but I was thought to be of low priority in both need/dependence and risk (There is a legacy of home-helps only working mornings from when the concept was first introduced as `mother's helps')

 

In December 1993, after 6 years of struggling in this way and an acute incident where paint and gas fumes entered my flat, I collapsed outside whilst trying to escape the premises. I cannot praise the paramedics too highly. They were gentle with my body, slow and careful in assessing the situation before taking action (i.e. getting me up from a concrete floor) and completely respected my own explanation of my condition. I was in shock and once admitted to hospital the treatment I received only compounded the massive adrenalin surges to which I am prone at the slightest physical or mental stress.

Health professionals were mostly either dismissive or really angry towards me. I was told that "chemical fumes at such dilutions could not possibly produce such effects". I was treated variously as `crazy', a fake, and a time-waster. I was admitted to a ward where the chief consultant soon instructed nursing staff to remove the commode from my bedside and not to assist me to the bathroom. He challenged me repeatedly to get up and walk, often in front of a full complement of student doctors. At this time I was too debilitated to do more than press a buzzer with my thumb – needing to be turned in bed and assisted in everything that I did. I was very afraid that whilst my body was in such an acute crisis my heart muscle might become as weak as my skeletal muscles.

I obtained a letter, from the GP who had originally diagnosed M.E., which stated:

  1. There can be no question that this patient has a genuine diagnosis of myalgic encephalomyelitis due to an enterovirus. She had repeatedly positive hybridisation probes to enteroviral RNA. As with polio there is a risk of cardiac involvement. No doubt she will be thoroughly investigated in this respect.

  2. Again, with polio as an example, enterovirus spreads and condition worsens with injudicious physiotherapy. This should be minimal and paced carefully.

The chief consultant still insisted that I "Play the game". I should demonstrate my co-operation by standing up and walking and thence submitting to a full battery of physical and psychiatric tests and assessments.

To their credit the two nurses responsible for my care refused to follow the consultant's instructions and continued to provide full support. (I feel I must mention that the consultant was a cardiac doctor.)

Briefly, I did not feel safe and discharged myself from the hospital via the kindness of an almost total stranger who was able to borrow a padded reclining wheelchair. The following day, a district nurse urged me to realise that I could not possibly survive alone in my home in such a desperate state.

I was quickly admitted to a large and bustling General Admissions ward at a different hospital.

As soon as the muscle weakness would allow I began to try to turn myself once or twice during the day to relieve the pressure on my hipbones. By the evening I could no longer manage this and would ask for help from the nurses. They would become very angry and say that I could do it myself because they had seen me do it before, So, after turning me in bed, when the manoeuvre was already completed, they would then jab their fingers into my legs. When I came out of hospital a month later I had little units of four-finger bruise marks from the top to the bottom of my legs. As my body was so tender that I could not bear even a sheet over me without a bed-cage these bruises were painful in the extreme.

One of the main symptoms of M.E. is sleep disturbance, yet in addition to the usual noises of a busy ward, the staff used to play cards and share a takeaway meal on one of the empty beds at night. I became unable to sleep for longer than 12 minutes at a time, and it took me over a year to re-establish my sleep patterns (and then only with medication). As a consequence my levels of adrenalin were abnormally high for 18 months, which made me really very ill.

The main response to severe M.E. at every level, and I mean every member of staff including doctors, has been hostility and anger. Because I was young, alone and very ill I feel I was more vulnerable to abuse. When I was too ill to speak I had no one to speak to professionals on my behalf and defend my interests.

After 3-4 weeks the doctors said that there was nothing they could do to help me and they "were not interested in the aetiology of this illness". I was told that I should return home as they didn't know what to do with me and my health was probably being worsened by the conditions on a general ward:

I was in one six-bed group on a ward of 30 beds with only half-height partitions between each section. There were several televisions and a radio playing at once. The television in my own area was on for eighteen hours a day at high volume. Neither staff nor fellow-patients understood the need for quiet and the pain and physical deterioration that noise causes me. It was suggested that I put on headphones and listen to music. This is just a different sort of noise, but actually piped into your ears rather than just within the room! There was no understanding of hyperacusis at all.

I had problems with extreme light sensitivity. With fluorescent lights overhead, open curtains and bright skies I had to wear dark glasses and, a peaked cap. There were lots of problems with the number of chemicals and perfumes in use, particularly as I had just experienced an acute toxic overload from the fumes in my home. I couldn't get any food, except salads, that I could eat without being violently sick and having severe diarrhoea, 5-6 times a day. I was sweating profusely day and night and losing about half a stone a week at that point. All of this was just seen as me being very fussy, "precious" and controlling, by both staff and patients.

As I'd never heard of severe M.E. I requested an HIV test (I was not even in an `at risk' category), because I could think of no explanation for all of these alarming symptoms. I felt I might die.

As I was too ill to participate in the Social Services `all care-needs assessment' I was discharged without a care plan (three days before Christmas, to an empty house with just 3 care-calls per day.).

My life was wretched. I needed food every 2 hours. I was only sleeping for 12 minutes at a time. I felt demented by sleep deprivation and began to visualise suicide methods.

I felt abandoned.

Because my (new) G.P. would not agree that I needed overnight care ("You're managing fine") I was not able to acquire Higher Rate DLA. I was alone for 21 hours a day, unable to move, and at night my fear was overwhelming. Care calls were erratic and I was often left without food.

It was 10 months before I gained sufficient funding for 24-hour care from a "cowboy" agency.

It has taken 6 1/2 years of my life, since 1993, to achieve the appropriate levels of funding to pay for 24-hour care from a reputable agency and begin to stabilise my basic care provision (food, toileting and sleep) and we're not there yet.

This could all have been avoided if only adequate care arrangements had been agreed and funded before I was discharged from hospital.

 

June 7th 2000 The NHS and living at home today;

I have been unable to find a supportive GP for over 10 years.

My current GP has not made a home visit for over 4 years. It has been made clear that as this costs roughly 100 per visit I will be removed from the register if I continue to ask for home visits.

Before I registered with this practice the GP agreed to give a red cell magnesium test if I would pay the laboratory fee. He has refused to give me the magnesium injections. When asked why he took the blood samples if he did not intend to give the treatment indicated he told my relative; "I was only humouring her."

My GP took me into the practice because he "liked the interesting patients". I asked what would happen if I ceased to be interesting and was told: "I'll pass you on to one of my colleagues in the practice".

I have received repeat prescriptions for stomach medication for 4 years without a consultation.

I cannot get a cervical smear test done at home even though I am advised that I need annual checkups. The general practice has continued to send reminders for me to attend at the surgery for 4 years despite knowing of my bed bound condition. Cancer awareness leaflets are also sent and I worry. Recently I have been asked to sign a disclaimer to the effect that I have declined their services.

I receive no physiotherapy and am unable to straighten my legs due to contractures.

I receive no support with pressure care management.

I have had no dental care for 8 years and have yet to locate the community dental service and optician.

It is not acceptable to tell severely ill M.E. patients "There is nothing we can do to cure you so we cannot help you. Off you go. You'll have to get on with it."

I would really appreciate 2 domiciliary visits per year involving advice, support and reassurance about my healthcare worries

Other conditions can arise and masked by the M.E. but everything attributed to this condition.

I have learned through private testing that I have poor adrenal function and hypo-thyroidism but cannot find a GP who will explore and treat this.

I spent 2 1/2 hours being 'grilled' by an NHS wheelchair assessment advisor about my needs. She completely ignored my views. A reclining wheelchair without head  support was sent. Nor did it have raised leg rests. I cannot sit in it. It is never used. I am very angry about this.

Understanding mobility-impairment in people with M.E. is an area urgently in need of a revised approach by the NHS.

Health care professionals generally believe that people with M.E. fully recover after 2 years rest and pacing. When severe M.E. sufferers do not conform to this picture professionals often respond with anger. By this entrenched thinking we are made into a group to abuse.

Crisis care for acute episodes. At home and in residential centres.

I feel great relief, and appreciation towards those health care professionals I do encounter who have the humility to admit: "I don't understand your illness but I respect your opinion and value your input."

People with severe M.E. need to be supported to retain as much of their health as they can for as long as possible. We don't experience remissions. Once I lose an ability it never comes back.

For a significant percentage of us deterioration is a one-way street.

The NHS should aim to avoid making people more ill.

In the clinics and hospitals in which I have spent time the most respect and consideration was always shown to the person most likely to die or most visibly impaired. M.E. was not seen as life- threatening and not considered to be a `serious' illness.

In 1999 Dr. David Bell, a researcher and experienced clinician with a vast caseload of field experience in M.E. gave a lecture at Christie's in London entitled: "M.E. and the Autonomic System". He stated that: "People with M.E. have less activity than people, dying of HIV/AIDS, who are within two months of death." Dr. Bell was explaining that quite moderately affected M.E. patients are less able and active than terminally ill AIDS patients.

The NHS needs to be educated about this patient group: A group of people who are living at a lower level of functioning than the terminally ill but who must continue in this way for years, often decades.

For the severely affected M.E. sufferer management of one's health and care at a daily level is often an unsuccessfully waged battle. It is impossible to stabilise one's condition and therefore deterioration is ongoing 

When Sir Kenneth Calman announced the formation of the Chief Medical Officer's Working party on Myalgic Encephalomyelitis I had just one thought: "I must tell them we're here." That was some time ago, but I have kept my promise to myself and people with M.E.

Compiling this testimony has cost me the ability to write. This is another ability lost and unlikely ever to return but I have thought it worth the sacrifice. After all, what else have we got? It took eighteen years for me to learn that M.E. existed in such a severe form in thousands of other people too – and I was living with the condition!

 

I am hoping that this sounding board event will prove a more direct route to accurate information for NHS professionals and that it will not take a further 18 years for them to become enlightened.

As a teacher I worked as part of the initiative to combat racial prejudice in schools. At first we tiptoed along for fear of upsetting staff. Training courses were optional and referred to: "multicultural awareness." This was a necessary stage in the process, but eventually it became essential to refer to the issue as racism.

It takes years to erode institutionalised discrimination and prejudice, which is negative and unhealthy for both the victim and the perpetrator. Education about M.E. for NHS professionals needs to be: in-service, compulsory and of the highest quality. It will need to be an ongoing developmental process, not merely a one-off document, and include staff at every level and of all disciplines in the NHS.  

To paraphrase a well-used slogan from another human rights movement, I would say to the National Health Service: "We're here, it's severe. Get used to it! "

Thank you so much for reading/listening to this testimony.

 

This document is dedicated to my friend who is also living with severe M.E. She is 33 years old and has been living in a geriatric nursing home, against her wishes, for 4 years. She endures verbal and physical abuse every day. Yesterday I learned that she is often denied food and has been forced to chew on her bath sponge and eat toothpaste to assuage her thirst and hunger pangs. I asked what she wanted most. Her reply was one word, quietly spoken:

"Respect"

 

 

Postscript:

The person writing the story above values life. Yet she has spent hers in isolation from those she ever loved, without seeing friend or family member.

She stresses that she is not being negative in sending this, only "wanting people to acknowledge the seriousness of this illness and thereafter funding all that is necessary".

"I just want to be better. To be less ill on a daily basis. To receive some help with this appalling illness and for it not to be too late for me"

"I am 53 years of age and have been living with ME for 30 years. But inside I am still 23 years old because I never got to live those 30 years fully or otherwise. You have probably heard so many stories like mine, but as a 'veteran' of 30 years of living with ME, I still feel compelled to contribute and want to be a small part of the very great effort you are all making".

All that has happened in the intervening 10 years since the story above was written has been a continuation of the same and in those ten years this patient's situation has actually gotten worse. Where above it stated that "no GP visits at home for 4 years" - that is now 14 years!

The person who used so much effort, at risk to her own health, in order to submit the above story to the CMO is today totally bed bound and vulnerable to an unsympathetic healthcare service. Yet still she is hopeful that the future will change for the better.

 

Sir Liam Donaldson is expected to leave office in May 2010 after twelve years as the UK's Chief Medical Officer.

"I represent the Government, for which I work, the medical profession, which I try to listen to, and the public.
My moral principle is that if ever there is a conflict it is the public who wins
.
"

Sir Liam Donaldson - The UK Chief Medical Officer 1998 - 2010

Sir Liam Donaldson

The UK Chief Medical Officer - A Testament to Failure

Invest in ME April 2010

  

Further Reading:

Invest in ME - Communications with the UK Chief Medical Officer - click here

Last Updated: 05 April, 2010