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Health and Physical Challenge - Meeting the Need Chaired by Professor Neville Butler
Dr Aidan Macfarlane - ‘Substance abuse’ I want to talk about the broader aspects of drug abuse and exposure to drugs, and I want to really mix my talk between given you some quotes from young people and giving you some facts about substance abuse itself. I am also going to give some advertising for a book, ‘The User - the truth about drugs, what they do, how they feel and why people take them’, it is written by myself and my 26 year old son who had considerable first hand experience of drugs, and what we did was interview a lot of his friends who were in the drug taking scene to actually look and see what it was like, rather than all the sort of talk that goes on about it. So the quotes I am going to give you, and the facts, are in the book itself, so if you don’t want to take notes you can buy the book instead! The first quote I want to take is from the child call Sammy who is 13 years old, comes from the outskirts of Birmingham and I just want to use Sammy to illustrate the exposure at the moment to drugs. She is 13, she is going to go to a Catholic upper school, she has a younger brother aged 10. She says:- ‘I think the thing with drugs are getting quite bad because there are so many people doing it, like all the people dealing in it. They either get into groups, or gangs and go to people and pressurise them into it. I learn about these things from reading about it in the newspapers, from seeing it on the telly, or in magazines that I read (Mizz, just 17) have articles about drugs in them about how kids have been given something at a rave party somewhere and they didn’t know what was in it and they end up in hospital or something. I think you have your fun without taking drugs though, I don’t think people should take them really. Most of them take them because they are pressurised and there are people taking them in front of their mates, to impress them and then when they are out to have fun. Smoking ordinary cigarettes, I think, is stupid too. I tried one once, I was kind of slightly drunk at a party (and this is a 13 year old girl) with my mum and she didn’t know and I didn’t know what to do. Somebody put one in my hand and so I took one puff and it didn’t really have any effect or anything, like feeling sick, but that was the only time. Mum is really strict about these things and I like that. The only time we have a drink is when it is like a birthday party or something.’ That is the exposure. The exposure I would like to suggest now, and I will come onto the facts, is pretty universal to drugs. What I would like to do now is to look at the wider aspects of substances which people take. If one is looking at a drug taking ladder, and thinking that one progresses from one drug to another, and I will come back to this, caffeine is the most commonly used drug in the UK, by the young and old, in tea and coffee. It is pretty universal. Any one here who does not drink tea or coffee? Although it doesn’t alter mood, or rather alters mood to a mild extent, there is no evidence that it alters people’s immediate behaviours to any great degree (I have put in any great degree because some of us who drink a lot of coffee, start to shake half way through the morning!). Alcohol is the second most commonly used drug by young people. Nearly 90% of all boys in the UK and nearly as many girls have drunk alcohol by the age of 13. It is the second most dangerous drug in terms of the number of deaths it causes. In terms of deaths both from the immediate results of taking alcohol, the causes of accidents etc. and of course the long term effects and I will come back to this. The one I quite naturally, and not surprisingly to some people, mind about most is tobacco. Why do I mind about it? Because we are exulted by the government again and again to try and stop young people to stop smoking, but do they play their part? Do they ban advertising, do they really put up the price of cigarettes? Why should we as health professionals be struggling to do something about tobacco when the government themselves are not actually doing their part? And until we stand up as professionals and actually start saying that we are wasting our time doing our bit unless you do your bit, we are not going to get any action. Now by approximately the age of 16, it is very easy to remember, one third will be smoking and continuing to do so, one third will have tried smoking have given it up, and one third will not be smoking. And again, like caffeine, it does not change people’s immediate behaviour to any significant degree, and if you give up smoking by the age of 24, you will probably get away with minimal health bad effects. But it is extremely addictive. It is thought to be as addictive as heroin. As far as the illegal drugs are concerned, I am glad to say that cannabis is still the most common. But I think there is increasing concern that cannabis is actually smoked with tobacco an awful lot of the time, and it is the tobacco which is the addictive part to it, and therefore if you mix smoking, if you roll a spliff with tobacco in it and you smoke it, what you are doing is becoming addicted to the tobacco part, turning you onto tobacco which is in the long term a more dangerous drug. Not to say that cannabis itself doesn’t have dangers. I now want to go on to a quote from another child. This one is called Rachel and this is a drug taker, because I am now going to concentrate, having just talked about the abuse of other substances, to put it into perspective on the kind of number of deaths that one is talking about per year related to drugs, illegal drugs, about 1,200 deaths in England and Wales, total number of deaths from alcohol is about 30,000, and total deaths from smoking is about 110,000. So, if you are going to get things into proportion, here is a government who is keen on tackling drugs together, and yet something that is causing 100 times as many deaths they are not willing to take the kind of action which I think they should be taking. Now Rachel’s story, as I said I am now going to come onto illegal drugs, Rachel is 16, she is taking her A levels at a North London school, she lives with her parents in North London, her father is a doctor and her mother works in an advertising agency. After university she wants to make documentary films. She says about starting drugs:- The first time I tried drugs was when I was about 11. It was on holiday in Wales with a group of mates who were all older than me, most of them were 15 years old, I reckon. I liked it. It was a kind of cool thing, if you know what I mean. It was fitting in that mattered. I mean after being a kid I really enjoyed it. I puffed before I smoked any fags. I was 13. Me and Chrissy went down to the local bay. We didn’t know anything about it, we didn’t know how to take them, what they’d do or anything, we didn’t have a clue. We went down, it was half term, and once we had taken them once, we took them for a whole week. We thought they were wicked. We must have taken them four or five times. It blatantly changes you. It’s puts a new perspective on things, you just see things differently. I think for a while, I thought it made you a bit more perspective about things, like relationships. Also with trips on acid you can find something interesting about just the most boring things. That’s a major attraction, you don’t actually have to do anything exciting when you are tripping, it’s just that. It’s a bit like being born again, it takes you back to when you were like a little child, all innocent, just sitting them, finger in your mouth looking like a geek. At my age you spend so much time sitting round with your mates, and you are not really doing much and you don’t have that many interests so there is nothing to stop you puffing. Puffing just allows you to be bored. Now, I think that that is a very interesting remark - puffing or taking drugs allows you to be bored on them - and I think that if you are looking for interventions may be that is an area we could look at further. Now, the facts about exposure to drugs. Studies done by the Exeter Schools Health Unit, John Balding’s unit, would indicate that by 11 to 12 years old, 1 in 5 children of both sexes would say that they know somebody who is taking illegal drugs. From 13 or 14 years of age this has risen to half of all children, and nearly three quarters of 15 to 16 year olds. So how many take illegal drugs and how many don’t take them? Different surveys show slightly different figures, but really they all add up, if one wants to make generalisations, to a fairly clear picture. By the age of 13, only about 10 in every 100 people will have been offered an illegal drug, and 6 in every 100 will have taken it. For 14 to 16 year olds in the UK, between 50 and 75 percent will have been offered drugs. So, the actual exposure is the majority are being exposed to drugs. Again, amongst 14 to 16 year olds in the UK, between 30 to 57 percent will try illegal drugs and these numbers will apply to each year group from 15 through to 20, although the proportion being offered illegal drugs and taking illegal drugs will go up. The maximum age of drug taking is about 18 to 20 years of age. Now one of the most important things, I think, one needs to know about is actually the types of drug takers. Just to remind you that Cannabis is, has been, and will always be (I think), the most common drug used, followed by amphetamines, natural hallucinogenics such as magic mushrooms and ecstasy. I usually ask the audience before I begin how many people have actually tried drugs, but have not done so today, but recently I was at the Royal College of General Practitioners, training general practitioner, and I asked them and about 25% held their hands up, so that illegal drugs are used right across the board. The main thing which I think you need to know is that there are three main types of illegal drug users. By far the largest group are the experimenters who try say, cannabis a couple of times and leave it for other things and other experiences. Neville Butler was saying what other addictive things I would be talking about, I have talked about cigarettes and alcohol, well may be sex should be another thing is addictive to some people - much nicer to be addicted to than some of the other things. The second most common group, which is also widely represented, is the social user, who tries drugs, uses them in the same way one might go down to the local pub and they are much smaller relative group than the experimenters. The smallest group of all, if you take all drug users as being 100% then these represent just 5%, are the serious compulsive drugs users, or abusers, or addicts. And my own feeling is that we must concentrate on is not stopping young people from experimenting on drugs, but asking the question why do young people move from experimentation to actually becoming addicted. And one of the interesting things in the area is whereas experimentation is right across the board, all social classes, all types of young people, when you actually look at the addicts in there they tend to be people in lower social class with quite a lot of mental health problems. So you can see that the experimenters to me are quite a normal healthy group who have got something on the menu to try, and they try it and go onto other things, and I don’t think we should be concentrating a vast amount of time and effort on them. But really asking the question why you move from that to the relatively small group who actually abuse drugs. Why do people take drugs in the first place? Well I am sure a lot of you will have experimented with drugs yourselves and I don’t really have to answer this question for those people - because the effects are pleasurable. And that is what we have to stick with in our memory, because people take drugs because they are fun, they don’t take them because they have ghastly effects. they take away feelings of shyness, anxiety, lack of confidence, their friends all do it. Sometimes they take drugs because they make them feel different, rebellious, and individualistic. And some take them because it makes them feel they are fitting in groups. Some will try anything once out of curiosity. For some people taking drugs there is a more bearable alternative to other kinds of life. I first came across drug taking in Boston about 30 years ago, if you lived in the black ghettos there, or if I had live in there I would have been taking heroin like a lot of people would be, because life was so unbearable, and it just helped people through it. Sensations being offered are better than being bored, or the reasons, in most cases are a combination of those things. The answer to why young people themselves take drugs:- 50% say they take drugs for fun or out of curiosity, 30% because their friends are all doing it and as I said 20% because it is a better alternative than their ordinary life. I think that one interesting thing which has come out of the research on drug taking is that there is a very strong association between different forms of experimentation. I hate the term risk taking by the way - young people do not risk take, they do not see things as being risky - what they are trying to do is learn by experimenting with life. Most of us actually learn by experimentation. But it does appear that as some people are very tall, other people are short, there is a range of experimentation in people. High experimentors tend to experiment right across the board and low experimentors don’t experiment as much. So, if you smoke you are more likely to drink beer and alcohol, are less likely to wear cycle helmet or seat belts, more likely to have started earlier sexual activity and have more sexual partners. All these things seem to run together, and I don’t think it is at all surprising. It reflects life, some people like to try everything and some people are more cautious. Why has there recently been an increase in the use of drugs - both world-wide and in the UK? Because believe me if you go to Europe you will find the problem is everywhere, Russia and everywhere has an increasing drug taking in their society. Well for one thing, they are much more available, there are more of them - increase in variety. We live in a materialistic market orientated world where our values is in making money out of anything including drugs. What you have got are highly experimental teenagers on the one hand who will try anything which is on the menu, and on the other hand you have the market orientated world who will flog you anything as long as they can make a profit out of it, and you put the two together and you put the two together and it is quite likely you are going to have a decent market going. My main concern is that we fear drugs so much. That we run away from them. Instead of getting informed about drugs, and on the whole people are not informed..... are there any GPs here?...no not one..... general practitioners are the ones young people generally do turn to for advice from time to time, most general practitioners would feel very badly informed, and would feel that they know actually less than their patient. Is there anyone here that they feel that on the whole they know more than a young person in the drug scene? There must be some here who do...OK great. Of course you could all be directly involved in taking drugs too in which case you could not actually answer that question come to think of it! So I think that one of the problems - and it happens again and again when something new comes along - there is a great amount of fear. And what we need to do is to get properly informed about what the scene is actually like. I think the very illegality of drugs makes the price artificially high, and that involves as we all know, a criminal element. But I think you have to understand that most of drug taking in this country does not have a criminal element. What will happen is, in the most common incident, a kid will go to a party and before he goes he will avail himself of his next door neighbours cannabis plant, he rolls half a dozen spliffs, in much the same way as he would take a bottle to the party, he goes down to the party, he floggs in order to get himself a little bit of pocket money, at a pound a time or something in the same way you might sell of your beer if you take more than one bottle, and that is your main dealer at shop floor level. Now, how much you want to get that down to criminality and whether those people should actually be seen as criminals I leave up to you. But the message I want to leave you with is by far the biggest part of drug taking in this country - it is purely experimental, with relatively harmless substances, and what we need to understand in our society is why some people actually end up at the hard end of drug taking. What is it in our society which leads people to think that that alternative is better than real life. Can we not provide a society where real life is decent enough that they don’t actually have to do that?
“Epilepsy in Adolescence” Dr Frank Besag Introduction Although the incidence of epilepsy is high in adolescence and the prevalence of psychiatric disorder is also higher than in childhood or adulthood, specific services for adolescents with epilepsy are rarely provided. This subject also, surprisingly, receives little attention in many books on epilepsy. Adolescence is a time of great change, with growth into adulthood and the issues of preparation for university or employment, driving, drinking, social/sexual relationships, preparation for marriage/conception and a general increase of responsibility. Epilepsy impinges on all these areas to a significant if not major degree. In addition, adolescents tend to be very body-conscious and do not like to be different from their peer group. The stigmatising effect of a condition which implies loss of control and requires the regular taking of medication is liable to have a very adverse effect on the adolescent unless the situation is managed well. Denial of the epilepsy may lead to risk-taking which may include the refusal to take drugs or to take other precautions. Management dilemmas There are some specific management dilemmas in adolescents with epilepsy. Although the focus of both the initial interview and follow-up discussions should be on the adolescent, because the history depends so much on the informant it is necessary to interview the parents. This situation needs to be explained to the adolescent. Sodium valproate is the drug of choice for a number of the epilepsies of adolescence and is certainly the drug of choice for juvenile myoclonic epilepsy but may be associated with weight gain; this is a particularly unfortunate adverse effect in body-conscious female patients, who may refuse to continue taking the drug. The Dilemma of declaring epilepsy on job/college applications may need to be discussed. Although it is important to be honest with a prospective employer, the applicant will generally not obtain the job if they are not interviewed, and the declaration of epilepsy may prevent short-listing. One option used by some applicants is to leave the appropriate place on the form blank and, after the job has been offered, to declare the epilepsy in a positive way, explaining how this should not interfere significantly with the ability to carry out the duties required and indicating what measures would need to be taken if a seizure occurred at work. The broad area of ‘independence versus safety’ is a difficult one for an individual who is trying to establish independence and a smooth transition to adulthood but may need to rely on others to some extent to maintain safety. The specific issue of drowning in the bath must always be discussed in this context. The issue of ‘independence versus safety’ also impinges on a number of other areas. Adolescents do not like being told what to do. The doctor should try and avoid ‘giving advice’ but should, instead, encourage questioning and provide information, emphasising that the individual is in control of his or her own life. The following are suggested rules for the doctor. 1. Always talk to the adolescent first, ignoring the parents initially. 2. Ask the adolescent to introduce the parents to you. 3. Explain to the adolescent what will happen in the appointment. 4. View talking to the parents as a ‘necessary evil’ and explain to the adolescent why this is necessary. 5. Write to the adolescent not the parents. 6. Ask the adolescent’s permission to send copies of the letters to the parents. In addition the following practice points should apply: 1 Check the diagnosis 2 Characterise the syndrome 3 Provide accurate prognostic information 4 Treat with appropriate medication 5 Provide information on the following. · High risk of the unsupervised bath · The effect of irregular sleep · Alcohol · Driving · Sport · Employment · Contraception · Genetic implications · Advantages / adverse effects of specific anti-epileptic drugs. 6 Listen, counsel, inform; avoid giving advice.
Diagnosis There are a number of syndromes which should not be missed. The following may present in adolescence. · Juvenile myoclonic epilepsy · Juvenile absence epilepsy · Epilepsy with grand mal on awakening · Benign partial seizures in adolescence · Photosensitive epilepsy · Reading epilepsy · Subacute sclerosing panencephalitis · Epilepsy from cortical brain tumours In particular, the important syndrome of juvenile myoclonic epilepsy should not be missed. Juvenile myoclonic epilepsy This is an idiopathic generalised epilepsy syndrome with age-related onset, commonly between 12 and 18 years. The sex distribution is equal. Bilateral, single or multiple irregular myoclonic jerks occur mainly in the upper limbs. Most of the patients who present for present also have tonic-clonic seizures and may have absence seizures. The seizures predominantly occur soon after awakening. The patients often present with a history of one or more episodes of having a tonic-clonic seizure on awakening. The doctor should always ask specifically about morning myoclonic jerks, slowness or clumsiness. Specific enquiry should also be made about ‘blank spells’. Patients often do not declare the myoclonic jerks or absence seizures. If this information is not available a diagnosis of juvenile myoclonic epilepsy is likely to be missed. It is very important to diagnose this condition because most cases respond very well to sodium valproate but this generally needs to be continued long-term even if the patient is seizure free for years, the chance of relapse is high if the sodium valproate is stopped. It has been suggested that the relatively new drug, lamotrigine, may be effective in those subjects who do not respond adequately to monotherapy with sodium valproate. Juvenile absence epilepsy The onset of this syndrome is usually between 10 and 17 years. Males and females appear to be equally affected. The subjects are usually neurologically normal. A family history of epilepsy is common. The photosensitivity rate is high. Over 80% also have generalised tonic-clonic seizures. The absence seizures, in particular, usually respond very well to treatment with standard anti-absence medication such as sodium valproate or ethosuximide. Epilepsy with grand mal on awakening The peak onset is around puberty. In this syndrome the seizures occur exclusively or predominantly soon after awakening from sleep at any time of the day, with a second seizure peak during evening relaxation. Seizures may be precipitated by sleep deficit, excessive alcohol or sudden arousal. Benign partial seizures in adolescence This syndrome needs to be distinguished from benign partial seizures of childhood. The onset is 10 to 20 years with a peak around 13 to 14 years of age. It is more common in boys. There is usually no family history and no cognitive or neurological impairment. The subject has simple or complex partial seizures, frequently with secondary generalisation. There may be a cluster of two to five seizures in 36 hours. The patient may have only one episode or either a single seizure or a single cluster of seizures. The EEG is typically normal or shows only mild abnormality. There is no typical EEG pattern, in contrast to the syndrome of benign partial seizures in childhood with centro-temporal (rolandic) spikes. Because benign partial seizures in adolescence often present with only one seizure or cluster of seizures, treatment should be avoided unless there is a recurrence or unless there are particular reasons for treating. Photosensitive epilepsy These are more common in adolescence. They are most often detected around 12 to 14 years, although careful history taking may elicit an earlier onset. Two-thirds of the subjects are female. The photosensitive epilepsies are not a single syndrome. It is always important to define the syndrome in which the photosensitive epilepsy is occurring, such as juvenile myoclonic epilepsy or juvenile absence epilepsy, so that specific information on treatment and prognosis can be given. Reading epilepsy This is a rare, benign form of epilepsy with a mean age of onset of 17-18 years. It is more common in males. There is a strong genetic predisposition. The diagnosis is facilitated by the very characteristic motor/sensory aura; after reading for a period, abnormal sensations or movements occur in full consciousness, involving the tongue, throat, jaw, lips and face. If the patient does not stop reading, this aura may progress to a tonic-clonic seizure. If the subject stops reading when the aura occurs, tonic-clonic seizure can often be avoided and treatment with antiepileptic drugs may not be necessary. If treatment is given then sodium valproate appears to be the drug of choice. The interictal EEG is usually normal. Subacute sclerosing panencephalitis This condition, which typically follows measles infection very early in life, under two years of age, usually presents in the teenage years with relentless deterioration and eventual death. Initially there may be subtle loss of intellectual ability but myoclonic jerks or more complex abnormal movements soon become evident and the ensuing dementia is all too obvious. The EEG pattern is characteristic, with a discharge in all the leads when each jerk occurs. Measles antibody is raised in blood and is high in CSF. Epilepsy from cortical brain tumours Although cortical brain tumours can occur at any age, sub-tentorial tumours are more characteristic of childhood and are less likely to present with epilepsy. In adolescence there is a greater risk of cortical tumours. Because of this, serious consideration should be given to investigation with neuro-imaging of adolescents who present with partial seizures. The exception would be those with characteristic benign partial seizures, are described above, with a single seizure or single cluster of seizures and no recurrence. Investigation The investigations of epilepsy in adolescence are similar to those at other ages. Basic blood test or full blood count, urea and electrolytes, calcium and liver function tests should be performed. An EEG with photic stimulation should be obtained. Neuro-imaging should be considered but will not be necessary in those conditions which are obviously benign, as described above. Treatment It is very important not to group the epilepsies of adolescence together as a single entity. For example, benign partial seizures in adolescence should not be treated if there is only a single episode whereas treatment of juvenile myoclonic epilepsy with sodium valproate is strongly recommended and usually needs to be continued long term. The mainstay of treatment is with anti-epileptic medication. The first-time drugs carbamazepine and sodium valproate should be used. Sodium valproate is, as already stated, the drug of choice for juvenile myoclonic epilepsy. It is also the drug of choice for absence seizures. The role of lamortigine as a first-time drug is currently being assessed. This drug has a wide spectrum of action and has advantages over sodium valproate in being very well tolerated. It is not associated with weight gain, which is a common problem with sodium valproate. For those adolescents with seizures of partial onset who cannot tolerate the adverse effects of anti-epileptic drugs or who refuse to take them, self-control of seizures should be offered. This method may be effective in suppressing at least a proportion of partial seizures, especially those which are heralded by a clear aura. In treatment-resistant seizures the possibility of ‘pseudoseizures’ must always be considered and should be managed appropriately with a positive, non-punitive attitude. The concept of ‘locus of control’ is important. An approach which is often helpful is to say: ‘Wouldn’t it be wonderful if you were in control of the attacks instead of the attacks being in control of you?’. The adolescent should be encouraged to find a way for controlling the attacks. He or she should be reviewed after a specified period of time, for example three weeks, and if there is any reduction of the attacks at that time they should be praised for having done so well and for having begun to gain control themselves. Sometimes a change of life situation may be necessary. Surgery may be indicated in a number of circumstances. The most obvious of these is the tumour presenting de novo in adolescence. Some teenagers may have had a history of complex partial seizures for many years and may be found to have mesial temporal sclerosis, a dysembryoplastic neuroepithelioma or a hamartoma on MRI scanning. It could be argued that these patients should have surgery earlier. If surgery is necessary, it is probably better to carry this out sooner rather than later. The longer the seizure disorder affects the subject’s education, development and social situation the more difficult it will be to overcome the adverse effects of the epilepsy, even if the seizures themselves are controlled. Conclusions Adolescence is an exciting but uncertain period. Epilepsy may present for the first time in adolescence, adding greatly to complexities of this period. Well-established epilepsy may vary over the span of adolescence, increasing the uncertainty when so many other changes are taking place. In managing epilepsy in adolescence it is important to consider specific syndromes and causes because these may require very different styles of treatment or management. It is also very important to consider the impact of epilepsy on the life of the adolescent and to minimise the isolation and stigmatisation that the teenage may feel at a time when being part of a approving peer group is so important. These factors, together with the issues of alcohol, driving, sport, contraception, genetic implications, and ‘safety versus independence’, imply that the management of epilepsy in adolescence requires skill and sensitivity. Further reading Epileptic syndromes in infancy, childhood and adolescence. J Roger, M Bureau, C Dravet, F E Dreifuss, A Perret and P Wolf (eds). John Libbey, London, (1992) O’Donohoe NV. Epilepsies of Childhood, Butterworths, London (3rd Edition).
Anne Philpott - ‘A white coat and sensible shoes’ Young Women’s Sexual Health I work for International Family Health now, which is a British based organisation (NGO) specialising in international sexual and reproductive health, but I was the co-ordinator of a young women’s sexual health project in the South West of England for two years, and what I would like to talk about today is some general aspects of the project. It was funded by the health authority and managed by two voluntary sector projects NCH Action for Children and the local Well Women’s Centre. I was employed for two years, from September 93 to September 95. The aspect which I am going to talk about mainly today is the results of a participatory needs assessment that was conducted as part of the project. The project originated out of NCH Action for Children’s work locally, running teenage pregnancy groups and also young women’s sexual health groups, and also a need expressed by the Well Women’s centre that they were not meeting the needs of local young women. A report was produced of the needs assessment and was disseminated in the area. What I am going to talk about today is quickly outlining the methodology of the assessment and the talk about at the findings of the needs assessment and them some issues about the participatory and community development of the needs assessment. The needs assessment aim was to identify the sexual health service needs of women aged 13 to 25. That age group was chosen because of the high rate nationally of unintended pregnancy and the high rate of abortion in women in their early 20s. Some people felt that was quite a high age for a young women’s sexual health project. It was also a needs assessment to identify the needs of service users who traditionally didn’t access sexual health services in the area, and there was focus on a particular geographical area. This area was a large local authority housing estate on the outskirts of a small town. They had the highest number of 10 to 17 year olds of any ward in the County, a higher pregnancy rate, there had traditionally been a lack of resources in the area, although NCH Action for Children did have a project there, this was where the young women sexual health project was based, and there was a higher rate of unemployment than in the surrounding districts. The data was collected for the needs assessment in two stages. The first was field work with young people. There were 9 focus discussion groups held with young women. The discussion groups were sampled on age ranges and other aspects, for example, one of the focus groups was for 13 to 14 year olds, another group was for women who had had children as teenagers, another group was of teenagers who had been pregnant themselves, there was a discussion group with young lesbians, and another discussion group with women with learning difficulties. There were also two focus discussion groups with young men, it was felt important not to miss the perspective of young men when thinking about sexual health service needs for young women. The second stage was with service providers, where there were 19 semi-structured interviews that took place. Service providers were recruited through traditional work channels and all sexual health service providers or people who had a related interest in the area, and also some service providers were recruited through, for example I saw an advert in the local newspaper for a pregnancy help line that would offer free pregnancy testing, so they were also interviewed. Now I am going to talk about what we found out during the needs assessment. These were the areas where the results were focused. The first two are looking at the issues raised with young women in the focus groups. The third and fourth around services are a comparison about what young women said about what they felt about sexual health services and also what service providers said, and the last one is a comparison of what young women said in the focus groups and what young men said in the focus groups about sexual behaviour. Young women were asked what type of sexual language do they use and what sexual language do they feel comfortable with. A lot of young women said that they felt very caught between what one women called the highgenic - the big words, the medical language, and slang which they often found difficult to use as they found the words offensive, some of the words they would use to describe their own bodies. One young women said:- “It’s all chemical and you have to call it’s proper name. I can’t say I’ve got something wrong with my fanny doc.” So young women often felt that they had to feel that they were speaking a foreign language when they went to see their doctor, they had to think in advance about what they wanted to say when they wanted to talk about a sexual health issue. One woman said that her doctor had explained that she was to take her contraceptive pill orally, and she didn’t feel she could ask what orally was, and she didn’t understand what that was, she didn’t realise that it meant putting it into her mouth. A lot of young women in the focus groups, particularly the younger women, spoke about having secret and inventive language which they used when talking amongst themselves, so that either young men or older people would not know what they were talking about. One young women talked about using words such as ‘jazz’ or ‘opera’ to describe different types of sexual activity. So they might say ‘I went to see some Jazz last night’ so that people didn’t guess what she was talking about with her friends. Another young women said, ‘we use totem - you know to describe time of the month - a 40 year old wouldn’t understand’. Secondly we asked young women what they felt the determinates of trust were in a relationship with the service providers and educators. By far the biggest deterrent to trusting somebody was that that person was judgmental. For example, one young lesbian talked about her doctor assuming that she was on contraceptives, when she went to talk about her irregular periods. Also, young women talked about the assumption that they were sexually active, when they asked a question about condoms for example. Young women talked about a need for clarity around boundaries of confidentiality. Not only in the actual face to face relationship, and how far the information would go, but also in the other aspects of confidentiality around that. Another thing that young people said that they did, was testing out. The would test someone out with a trial question, which was not about the thing they wanted to know. For example one young women said that she would pretend that she had a questionnaire from school about sexual health, and then she would ask her mum to help her out when really she was trying to find out about sexual health issues. The focus groups also talked about the importance of education for the educator, especially about HIV and AIDS. A lot of people said that their parents did not know about HIV transmission as they had not been taught it themselves. The second topic is education and information. We asked young women about the way education was delivered, topics and also sources of education. A lot of young people talked about a dislike of a biological focus in sex education rather without the social focus. One women talked about a book her mother gave her when she started her periods. ‘She gave me a book about how a caterpillar turns into a butterfly. God knows what that’s got to do with periods.’ Lots of young women talked about the confusion of euphemisms in many different ways in their sex education. They also talked about disliking the use of boiling tubes to demonstrate condoms. They said that often descriptions of sex were often romantic and vague, and didn’t match up how their first sexual experiences were. For example most people’s mums extent of what they say was ‘when you find a person that you love very much, you have a special cuddle. It’s very exciting, and all sorts of wonderful things happen.’ Young women talked about the dangers of being educated by their first sexual partner and one said she hadn’t realised she had had sexual intercourse until it had been explained to her afterwards by her first boyfriend. They often felt punished for asking about sex. They also criticised the fact that there were often hidden agendas in their sex education. For example an emphasis on having to be emotionally responsible during sex, or sex taking place within marriage. Young women talked about the surprise of actually feeling sexual pleasure which had not been explained to them in their sex education. They talked about the social or sexual reality of their educator not being the same as their own social or sexual reality. One young women said how her doctor had explained to her how to use her diaphragm:- “The doctor said ‘you just get into the habit. If you know you are going to be making love, you go into the bathroom, have a wee, brush your teeth, put your cap in and there you go’ it’s the way she said it, I just don’t do it like that”. She said that sex for her was more spontaneous and she also didn’t talk about making love. The next section was about sexual health services. We did a comparison between what service providers said and what young people said; why young women chose services and why service providers felt they thought young women chose services. There was often a stress on the importance welcoming of a non-judgmental receptionist by young women and also a privacy within consultations including a locking of the door when they had a smear test. Examples of recommendations that were made in the needs assessment were that they should be to set up a young persons watchdog for sexual health services that young people could go to themselves, that there should be more school counselling and that there should be a higher level of support services pre and post abortion. Another point that was made about why women chose service was that when they were asked why they might chose services they talked about (in ascending order) the costs of getting to services, travel problems, and then they focused on their worries about the staff attitudes or the atmosphere of the project rather than talking about the timing of service. That was also specific to the area in which the assessment was done as there was a difficulty in getting to the hospital - it was two bus journeys to get there. A comparison of the responses when young women and young men were asked about their perceptions or the reasons and motivations for different sexual behaviour. With regard to safer sex , young men talked about the difficulties of having sex outside or having sex around the back of the youth club. They said they found it difficult to focus on safe sex, on using a condom when they were already focusing on their performance and actually having sex and all the other stresses that came into the situation, and condoms came down quite low on the list of priorities. But when they knew that they were not going to be disturbed, or they knew they were going to have private environment, that priority was much higher. When young men and women were asked about the reasons and motivations for pregnancy, young women focused more on emotional and social needs whereas young men focused on economic needs. With regard to reasons and motivations for un-safe sex., young people seemed to find it more difficult to think of reasons for why they did something they should rather than why they did something that they shouldn’t. May be they had been asked that more often or they were more likely to think about that after the event. Some of the phrases were quite shocking. Men had the final push and women had no weapon against that, discussing diseases put them off sex, quick sex outdoors, getting on with it. But there was a common agreement that women were labelled ‘slags’ if they carried condoms or if they suggested using condoms. Turning to some of the participatory activities within the project; The advisory group which was set up at the start of the project was made up of both young women’s service users and also service providers. There was a recruitment of participants by young men who were involved in the project and also young women were involved in a wider range of the data collection and the data analysis of the needs assessment. For example young women generated scenes for the focus groups from a series of key words; they acted as focus facilitators, by attending focus group training. There was one focus group where we piloted the focus group questions and were given suggestions by that group of ways in which we could change the questions or the format. One thing that they said was that we had done a warm up exercise at the beginning of the session which they felt was inappropriate as it put them into a learning role in a group work sense, rather than research participants or being asked what their experiences were. Young women were also involved in analysing the transcripts of the focus groups. All the focus groups were taped and then they were typed up and they were coded by using a computer package and young women were involved in analysing the transcripts by working out code words and also doing the actual coding. The advisory group generated recommendations from the transcripts and so young women were involved in that. That itself threw up a lot of interesting discussions and showed between the service providers in the group and the service users themselves about what kind of recommendations there should be in the needs assessment. The young women were also involved in the launch, the dissemination of the needs assessment. A group of young women from the local school wrote a play about potential service development which they acted out at the launch. They were involved in the designing the format of the report, and also the cover for the report. One of the focus groups turned into an on-going sexual health group for young women which was called the ‘The Team Talk Group’ which is did some peer education work and they are now running sexual health groups themselves at the well women’s centre. There were young women involved as volunteers on the project as well and there were other activities along side the team talk group. The learning difficulties group which took part in the assessment are going on to take part in some peer education work themselves. These are some of the lessons I felt I learned about participation. I think it is important to change the power structures of the project itself, and not expect young women to change to fit into those structures. For example before the first advisory group meeting, I held a pre-meeting group with the young women who were to take part in the advisory group to explain how the meeting would run (minutes, chairing), and in retrospect that was stigmatising the young women that they had not had experience of advisory groups or that type of formal environment rather than actually looking at the advisory format and working out the best format for the advisory group as a whole. And towards the end the advisory group did tend to be more creative in the way that they discussed subjects, for example, when we were generating the recommendations. I think it is important to validate young women’s involvement in the project in a whole range of ways. Hard cash is a good example, which towards the end of the project’s running did do for the advisory group members, but did not do at the beginning. The professionals who were coming to the advisory group were all being paid for their time and in retrospect the young women were coming as volunteers, although there was childminding provided and other expenses that were being paid. But this was not validating, for the expertise which they were bringing to the group. I think it is really important to have transparency of motives. A lot of young women that I approached or spoke to were concerned that I was going to check up on their sexual behaviour or find out about the things they had been doing, such as sex under 16 which they shouldn’t have. That’s where the title for this presentation came from originally. When I went to the school to talk about young women and to encourage them to be in the focus groups, they were told by their teacher that someone was coming to talk to them and ask them questions about their periods, which they imagined as a question and answer session. They explained to me afterwards that they thought I was going to be wearing a white coat and sensible shoes and ask them in turn about their periods. I think it is important to think about why you are actually involving young women and at what levels in the project. Not just getting young people to stuff envelopes or do the peer education aspects of the project, but how involved are they in the policy or structural levels of the project, and what power do they have at that level. How much is ‘tokenism’ them being part of the project. It is important to have a consensus of expectations in the different participatory activities. For example in the advisory group as service providers and service users were coming together there might have been traditional expectations that came into that relationship because that’s how people were used to those relationships rather than looking at the fact that everybody was there to look at their own expertise for the project. Also finding out the expectations are of young people who become involved in the project - how much are they expecting that the project is going to play a support role or what kind of whilst they are being research participants or volunteers. Small initial contacts with the project often grew into larger involvement. This again was the sort of testing out of the project by the young people. Young people would often come and ask me for a leaflet or some information or a book and later come back and ask another question and later still become a volunteer with the group or become part of the advisory group. Another role that I think is important to focus on is the gate keepers of young person’s sexuality. We focused a lot on finding out what young women’s views were and their sexual health needs were, and maybe less so on the people who actually had the power to make changes about that in service provision or education. So it is important to look at how you can translate those needs that were expressed into a way which will hopefully promote change in the people who have the power. What are the advantages of the participatory and community developmental approach to the needs assessment?. It increased the project’s credibility amongst local young people involved and the way they would report back about the project to their friends. I just have just heard that someone has been employed to carry on the implementation of the work, which means that they have found further funding which is good. There is an increased relevancy of the research objectives. The areas which we saw within the needs assessment were a wider range that would traditionally be seen in the sexual health services. For example the language and trust issues, and the educational issues. I feel that we feel that we received a higher quality of information because of the participatory approach from the young people. There was also a focus on positive behaviour, for example asking questions like why people have safe sex rather than always asking why people have unsafe sex, which to me now seems logical because if you are trying to encourage more people to have safe sex you should be asking why they should have safe sex. In other ways the project provided a discussion bridge between service providers and service users for example in the advisory group where the two groups had a more equal power relationship and were able to discuss those issues. And also the research was not a kind of ‘smash and grab’ type research, it was ongoing and the project is still in existence in that local area. The Young Women’s Sexual Health Project is now based at the Well Women centre with a part time co-ordinator working to implement the needs assessment recommendations. This has entailed to date; the instigation of an evening drop in session at the centre, the continuation of a sexual health group for women with learning difficulties and establishment of a training scheme for service providers.
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