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Medication Report -
A Report on the views of Highland Users Group on Medication Prescribed for People with Mental Health Problems and the Information Provided about it

 

Contents

Medication and the reasons for this report
Does medication help or not?
Are people told about the effects of their medication?
Why do people not like being on medication?
What had been people's response to their dislike of drugs?
Is pressure put on people to take their medication?
Who should take the decision to take medication?
When should information be provided?
What form should information be provided in?
Doctors' prescribing patterns
Faith in medication
Combination of drugs
Information that should be provided to users
Prescribed drugs and illegal drugs
The Pharmacy Department at Craig Dunain
A medical record
An advance directive
Providing information when someone is too ill to make an informed decision
Prescription charges and payment forms for medication
Conclusion
Recommendations

Medication and the reasons for this report

Medication to alleviate the symptoms of mental illness is an ever present reality for the majority of Mental Health Service Users.

The introduction of major tranquilizer are often credited with establishing the possibility that Users of Mental Health Services could live in the community and the unwillingness of some Mental Health Service Users to keep on taking medication is often blamed by the media as being part of the reason why some of the tragedies committed by people with a mental illness have occurred.

However the medication used at present does not cure, at best it controls symptoms. It is also accompanied by side effects that can, in some cases, themselves be disabling. These vary from tardive dikenisia which is a permanent damage to the nervous system, to akathisia which can be described as an uncontrollable inner emotional and physical restlessness, to photosensitivity, blurred vision, diabetes insidious and of course in large quantities major tranquilizer give the feeling best described by Users themselves of feeling like a zombie.

In response to requests from Users we decided to open the discussion about medication. This discussion was also prompted by a request from the Scottish Users Network for our opinions on what should be included in a proposed booklet on medication.

In total 7 meetings were held at the branches of HUG involving a total of 61 Users.


Does medication help or not?

Views on this varied tremendously. Some Users were of the opinion that it was imperative to take medication and that without it they would either be dead or permanently in hospital whilst other Users viewed the side effects of medication as more disabling than the illness itself and expressed the view that they would rather be ill than on medication.

Some people disliked medication intensely but were scared to come off it.

Generally there was the view that medication can help and that this help can be long term however it was stated in all the groups that medication can not be used in isolation as the sole form of treatment.

There were also feelings that medication could be used as a crutch and that it was often used solely to control behaviour whilst leaving the underlying emotions accompanying mental health problems unaddressed.


Are people told about the effects of medication?

The majority of people had been given almost no information about the effects of taking their medication - (in perhaps two cases had a doctor volunteered information.) - In most cases people's understanding of their medication was discovered by experiencing the effects themselves or alternatively, by being told by other Users or reading reference books.

There was a feeling that doctors could not be bothered to inform people about the effects of medication or alternatively were too busy. In a small minority of cases Users were treated as troublemakers when they asked about or queried their medication.

There was also the feeling that people were not told about their medication for fear that they would come off it or not start it, if they knew of the side effects.


Why do people not like being on medication?

The main reason people disliked medication was because of the side effects however other reasons were given such as:

  • Being on medication made you feel like an illness or made you admit that you had an illness.
  • It made you feel controlled.
  • You feel dependent.
  • Not liking having a foreign substance in your body that is influencing your actions.
  • Who am I if I'm on drugs? I.e. which of your thoughts and emotions belong to you and which are controlled by drugs.
  • There was also a fear of more serious long-term side effects developing with prolonged use of the drug.
  • Feeling that you would be 'normal' without the drugs.
  • Not being on medication gave you independence.
  • Not being on medication made you feel good because you've 'succeeded'.


What had been people's response to their dislike of drugs?

Although many people were content to stay on their drugs a large number o people had wished to come off drugs. Some had tried successfully and others had got ill again when coming off drugs.

Some people had come off drugs but had deliberately not told their doctor for fear of the doctor's reaction. Some people had only stayed on drugs as a result of fellow Users explaining the side effects of the drugs to them when they began to experience them.

Is pressure put on people to take medication?

Many people felt that they had no control over the medication given to them, that their opinions were not listened to and that they had no say in their drug treatment.

Some people had pressure put on them to take drugs without being given information to help them to come to an informed decision. Some people had been threatened with being detained under the Mental Health Act if they didn't take their drugs.


Who should take the decision to take medication?

Users should be the people to decide whether or not to take their medication. However, this decision should be an informed decision which in many cases is not the situation at present.

To make the decision with expertise in the medication (either the doctor or the pharmacist) should explain the effects of the drug. This person should respect the user, listen to him or her, give them choice and support and accept contrary views. At the same time the user should respect the professionals expertise in the matter.

When should information be provided?

Information about medication should be volunteered at the start of treatment. It was said that some users may not be in a position to understand at this stage and therefore that the information should be provided again in the treatment if the user wishes.


What form should information be provided in?

It was said that it was very important to have verbal communication when discussing issues like this and that this information should be backed up with written material for future reference.

Reference books about medication should be readily available although there was an acknowledgment that reading long lists of side effects in isolation often served to frighten people rather than help them come to an informed decision.

Doctors' prescribing patterns

In some cases users had become aware that doctors favoured particular drugs and that they and their fellow users had been subject to 'blanket' prescribing of particular favoured drugs. This had lead them to have reduced confidence in their doctors prescribing ability and less faith in medication itself.


Faith in medication

A substantial number of users had felt that they had been treated like guinea pigs when prescribed drugs. This was either when they were prescribed new drugs or especially in the case of people with depression being prescribed a whole series of different antidepressants in the hope that one would work..

Whilst this is understandable as a form of treatment when few other options are available the lack of communication with users, which has resulted in this attitude, seems less so.

Combinations of drugs

A few Users had difficulty when prescribed a range of drugs - a situation, which again produced anxiety about medication. An example being a user prescribed antidepressants and then another drug whose side effect was depression.


Information that should be provided to users or be included in a guide to users:

  • The possible side effects of medication.
  • How long the side effects are likely to last.
  • What are the long-term consequences of medication.
  • How the medication helps.
  • How long are you likely to be on medication.
  • What alternatives or complements are there to medication.
  • The reasons for any change in medication.
  • How medication fits in with other treatments.
  • Where to look for more information on medication.
  • What the latest and most effective drugs are as opposed to the cheapest.
  • What can be mixed with the drugs?
  • A list of do's and don'ts with the drugs.
  • What could be the consequences of not taking drugs?
  • What rights do you have to refuse drugs as a voluntary patient or as a patient detained under the Mental Health Act and what are the consequences on you treatment of refusing drugs.
  • What the drug is that your being given.


Prescribed drugs and illegal drugs

Some prescribed drugs are addictive. There was a worry that taking these drugs could lead on to illegal drug use. There was also a call for more knowledge about the effect of illegal drugs on prescribed drugs.


The pharmacy service at Craig Dunain

Very few people had heard that the pharmacy service at Craig Dunain provided information about medication. However those who had used it, regarded it as excellent. These people included people who thought medication to be helpful as well as people hostile to medication.


A medical record

There was a suggestion that it might be helpful to record, from a users' point of view, what drugs they had been on, how they had helped and what the side effects had been which could then be made available to staff.

This idea was welcomed by most groups but many people thought that no attention would be paid to it.


An advance directive

In similar vein there was a suggestion that users, when they were well, could record forms of treatment that they responded to best, so that staff could pay attention to their wishes. Again this was welcomed but there was doubt as to whether staff would listen to it.


Providing information when someone is too ill to make an informed decision

It was pointed out that Users can be so ill that they can't take in information to make an informed decision, alternatively they can be so ill that they are desperate for anything that might alleviate the state they are in, or lastly, they can be so ill that they don't acknowledge the illness let alone the need for medication.

In these circumstances the person may not be detained under the Mental Health Act but equally might not be in a position to make an informed decision. It was agreed that in these circumstances a doctor would be justified on putting pressure on the person to take the medication.

However in order to do this a code of practice and ethics should be drawn up to make it clear in what circumstances this pressure should be maintained.

Prescription charges and prepayment forms of medication

The majority of groups thought that prescription charges should be free for long-term medication for mental health problems and a very small minority revealed that they had not taken their drugs because of the cost.

One group said that in that case all long-term medication should be free and that the consequences of this should be examined before taking this course of action.

Many people thought that these were useful but also many people were not aware of them or had not used them because their doctor had not informed them of the likely period in which they would be on medication.


Conclusion

Whilst many people were happy with their medication many people also disliked it.

Medication such as this should be explained to the user and the attitude amongst doctors that ignorance is best as regards medication compliance should be changed. Instead enough information should be provided to Users to enable them to participate rationally in their treatment.

The present situation where users come to decisions about medication without information from people knowledgeable in the field of medication is unacceptable.

In situations where an informed choice cannot be made a doctor is justified in putting pressure on the user to take their medication.

Recommendations

1. Doctors and psychiatrists should volunteer to explain the medication being prescribed, at the start, during treatment and when any changes in treatment occur.

2. There should be better access to Craig Dunain pharmacy service.

3. The pharmacy service should hold clinics in drop in centres and on the wards of Craig Dunain.

4. Leaflets on the drugs prescribed are often not included in hospital prescribed drugs or in incomplete packs of drugs - they should be.

5. Information packs should be provided in plain English.

6. Reference books should be provided in drop in centres.

7. Information should be provided by a professional with expertise in medication.

8. Community psychiatric nurses could (and do) provide useful information about medication.

9. It is useful for Users to meet other Users on similar drugs.

10. Prescription charges for long term medication for people with mental health problems should be fee.

11. An advocate should be present if requested when the question of medication is being discussed.

12. Longer appointments should be possible for people who want more information.

13. A code of practice and ethics should be drawn up on how to act when it is apparent that a user can't make an informed decision but is not subject to the Mental Health Act.

Acknowledgments

With thanks to all the members of HUG, and other mental health service users, who contributed to this report.

 

 


Highland Users Group
Tel: (01463 723560) — Email: hug@hccf.org.uk

 

 

 

 

 

HUG Reports - Medication