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3.3 Deputy S. Pitman of St. Helier of the Minister for Health and Social Services regarding the treatment available to M.E./Chronic Fatigue sufferers within the Health and Social Services Department:
What treatment is available to M.E. (myalgic encephalomyelitis)/Chronic Fatigue sufferers within the Health and Social Services Department?
Deputy A.E. Pryke of Trinity (The Minister for Health and Social Services):
Chronic Fatigue Syndrome, C.F.S., also sometimes referred to as M.E., can present in various forms. The patient referred to the hospital may be seen by any one of a number of different consultants depending on the G.P.'s (General Practitioner) view of which would be most able to help based on the symptoms. However, it is common practice that the patient will ultimately be seen by the neurology consultant. There is no test to detect or monitor the condition, no cure and no evidence to support any particular drug therapy. Treatment therefore aims to reduce the symptoms. Everyone with C.F.S. responds to treatment differently so treatment plans are individual, which can include anything from graded exercise programme to pain management and/or clinical psychology. In most severe cases a patient may be referred to a U.K. (United Kingdom) C.F.S. consultant where they will often undergo long periods of managed rehabilitation.
- Deputy S. Pitman:
Does she not agree that firstly, she does not have enough evidence to support what she says regarding the curing and possibly ameliorating the illness? I would like to know what actual research the department has done in that area because I know one big thing that does help the illness in a big way is stress, and psychological support is not something that is given to these patients.
The Deputy of Trinity :
Most patients are treated within G.P. surgeries and, as I understand it, it affects different people in different ways and they can be from mild, moderate or severe symptoms, and it is those symptoms, if the G.P. feels that a more specialist consultant is appropriate, then it can be referred to a specific consultant in that area. As regarding research, we have not undertaken any research regarding M.E. I know that in the U.K. there are a lot of research areas that are looking into it.
- Deputy R.G. Le Hérissier:
Is the incidence of M.E. in Jersey higher or lower in comparison to comparable areas of the U.K.?
The Deputy of Trinity :
That is very difficult because each patient is an individual and has individual symptoms, and some of them range, as I said, from mild to severe. Most of these, it is only the very severe cases that we see in the hospital. Most of them are managed within G.P. surgeries.
- Deputy J.G. Reed of St. Ouen :
Would the Minister tell us whether accurate records are kept of all M.E. and Chronic Fatigue sufferers on the Island?
The Deputy of Trinity :
If the Deputy is asking within the hospital, we do not log M.E. if they attend an Outpatients Department. That is the case across all outpatients in Jersey as well as the U.K. Should we? The numbers the neurologist sees are extremely small. G.P. surgeries? I am not too sure what G.P. surgeries do.
- Deputy G.P. Southern of St. Helier :
Does the Minister consider that it might be worth investigating serious cases of C.F.S. and doing a comparative study with equivalent areas in the U.K. or not?
The Deputy of Trinity :
The numbers are, according to the consultant neurologist, extremely small. Looking at the written questions, he recalls that about 5 patients have required hospital admissions for C.F.S. in the last 7 years.
- Deputy S. Pitman:
Sir, you never gave me my supplementary so if I can have an extra question. The Minister's answers, I believe, show that there is a big lack of knowledge with her and with the department in the questions as well because it only refers to chronic fatigue when in fact there are quite a number of symptoms including digestive problems, dysfunctional brain issues with cognition and susceptibility to depression, problems with blood circulation, muscle and joint pain, food intolerances, heart problems, breathing problems, et cetera, and she says that most people go to the neurologist. Does she not think that there needs to be somebody centralised to co-ordinate patients? She probably did not listen to the radio programme that was on over 8 weeks ago, it was very early, where a Charles Stevenson, who is an expert who has dealt with patients for 30 years, says that there is a need over here for somebody who is specialised given the population and given also that they calculate that in populations of around 0.2 to 0.4 people suffering with the illness.
The Bailiff :
I think the question was whether you agree.
Deputy S. Pitman:
Does the Minister not agree that we need a specialist, firstly? The Deputy of Trinity :
I think the Deputy mentioned a whole list of symptoms. The consultant neurologist has an interest in M.E. and if necessary he will take a second opinion from a hospital, King's Hospital, in the U.K. but also this demonstrates that people are individuals and they present in very many different individual ways, and if they have got digestive symptoms it is accepted it is better that they go and see a gastroenterologist rather than a neurologist.
- Deputy S. Pitman:
The problem with that is that they may think they have one symptom and they think they have got something when in fact they have got M.E./C.F.S. Now, in my experience there is not a specialist who knows about these symptoms. They only know that it is chronic fatigue or they tell people that it is all in their heads and they have to live with it. There really needs to be somebody who has the knowledge and can diagnose somebody and co-ordinate their treatment.
[14:45]
The Deputy of Trinity :
I would not disagree with what the Deputy said. There is no simple test unfortunately to detect or monitor the condition and no evidence to support any drug therapy so it is very difficult. Most of these cases are mild to moderate and are dealt with within the G.P. surgeries. Education can be particularly important and we have on the website links to M.E. and C.F.S. help groups.