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These guidelines contain rec- recognize that the majority of pregnancies are due to obesity) super levitra 80 mg cheap, and such women may be being developed and is the only one that publishes ommendations that buy 80mg super levitra amex, although they are not unplanned cheap 80 mg super levitra mastercard. In data on virtually all practices from every part technically mandatory for implementation, do and ‘unplanned’ pregnancy is a concept widely fact, in some areas of the world there are as of the country. The reason that it is ‘prob- betes, a huge difference from the situation 20 providing data at national, regional, primary entire chapter on preconceptional care with an lematic’ is the fact that this arbitrary and con- or so years ago, when pregnancy in diabetes care trust and practice level. The study Primary care is in contact with women with incentivizing primary care to deliver defned use should be documented at each contact concluded that formal preconception clinic pre-existing medical conditions who will ben- process and intermediate outcomes. Given with their diabetes care team sessions are unlikely to have an impact on eft from preconception information, advice these facts, it may therefore be possible to most pregnancies for women, as attendance and care, through the provision of contracep- encourage primary care to take on a role in • Guideline Recommendation 1. In the qualitative study be used to reinforce important preconception posed for consideration (Dornhorst A, Pierce The guideline also lists information about how cited above, three women (out of the 15 with information. It is important to have enough M, Gadsby R, personal communication August diabetes affects pregnancy and how pregnancy type 1 diabetes interviewed) described attend- time in the consultation to give important pre- 2010). This is valuable information ing preconceptional counseling and the anxi- conception messages and to realize that it is women of childbearing age who are living with that needs to be conveyed to women with dia- ety it provoked. Becom- care professional consultation with such ing pregnant: exploring the perspectives of women should be used to convey preconcep- women living with diabetes. Nevertheless, there is no doubt that these pro- active patient representative groups have changed forever the role of the patient in the development of diseases or to health areas considered today an therapeutics and of healthcare within society. Typical examples specializes within medicine in overseeing the pro- will be, on the one hand, an increased focus on cess of developing new therapeutics to improve the quality of life or on the effects of aging (such as standard of health and the quality of life within cognitive dysfunction, the menopause, osteopor- society. An integral part of and, on the other hand, disorders such as obesity, all progress in healthcare is evaluating the needs of attention deficit, hyperactivity, and even anorexia/ patients and society and the gaps in the present bulimia. The speciality should cover As members of the public become generally more all pharmacologically active treatments, all disease and more informed, it is inevitable that they will preventions and all health maintenance modalities. However they are classified or regulated, new thera- Similar growth in R&D investment has been seen peutic agents will continue to be needed, health outside America, e. With such a mas- benefits to deliver now, and to be potentially signifi- sive R&D effort, the process has inevitably become cant revenue generators for a business, allowing subdivided into several functional sections, the investment in future therapeutics. Basic chemical or structural researchÐexplor- The R&D process is moving forward as biomed- ing the genetic basic of a disease or the micro- ical science progresses and disease processes are structure of a receptor or enzyme active site, better understood. The process of developing a and from that, developing tailored molecules therapeutic agent is much more than the better to provide specific interactions and potential understanding of a disease leading to a new ap- therapeutic outcomes. Preclinical research and developmentÐusing first, state-of-the-art technical manufacturing sci- biological systems, up to and including animal ences to ensure a drug substance is pure; second, models, to explore the causes of diseases and appropriate and innovative pre-clinical science to the potential safety and efficacy of new thera- ensure that a new chemical entity is as safe as peutic agents. This section cacy and safety of a new treatment in humans and is itself, by convention, subdivided into three include a multidisciplinary approach to the med- phases. Finally, the process includes the that the entire development of each new thera- business management of the social and political peutic is seen in the context of its need to meet issues inherent in establishing, communicating governmental requirements and that the appro- and assuring the value of the new drug within a priate value-added components (e. Post-market approval medical affairsÐthis in- the level of being tested in humans, and over 80% volves the promotion of each product bymar- of products that are tested in man never become keting and sales functions and the oversight of licensed drugs. The basic responsibility and high-throughput screening, and computer- for establishing and maintaining the safety and assisted drug design, and so in the 1990s we have efficacy of a drug involves knowing where all of basic pharmaceutical discovery being carried out at these differing functions can impact on the risks the molecular and disease mechanism level. Con- is a basic axiom of pharmaceutical medicine that sequently, there is a real and ongoing role for those no drug can ever be considered completely safe. For example, Phiso-Hex (hexachloro- drugs of today within the medical and healthcare phene) gained broad usage as a skin wash and practices of tomorrow. It was is analogous to physicians in their practice learning used in pediatric and neonatal units in hospitals, about a therapy and, as they come to know more by nurses and surgeons as a scrub and was even about the use of the treatment, and as their practice sold over the counter as a teenage acne remedy. This was because, as medical science advanced, The management of a drug on the market is a more and more premature babies were able to sur- professional challenge for which no medical school vive. Hexachlorophene toxicity in humans was include the issues of quality-of-life evaluations, to- considered to have resulted and this led to the gether with the appropriate development of evi- product being modified or removed in many dence-based medicine, of outcomes research and markets worldwide. Used ap- case history that highlights another skill and propriately, they can help not only to establish the training required within pharmaceutical medicine, curative value of a new medicine but also to ensure namely crisis management. In the past, many recognize new opportunities and to be alert for any good therapeutic agents have not been used as or emerging evidence of potential added benefits and/ when they should be. This was not because patients or new safety issues, as products and those of com- in trials have not been benefited; rather, it was petitors are used more broadly outside the confines because the value message had not been positioned of clinical trials. Indeed, clinical pharmacologists have a real interest Any discussion of the discipline of pharmaceut- in the R&D of the pharmaceutical industry and ical medicine today would be incomplete without a their training is a good one for entry into the indus- comment on the impact of biotechnology and the try. Indeed, revolution that is driven in a very different way some pharmaceutical physicians will work in even than that in which the pharmaceutical industry more basic and theoretical science settings, whilst has classically been run. Of multitude of small venture capital companies course, many within the specialty can and do which are espousing the very cutting edges of re- focus on the development of disease models and search in biologics, genetics, and technology. In this context the role of are vital to the successful development of new pharmaceutical medicine takes on its most extreme drugs, and the continued and continuous inter- variants. At one end are physician/scientists, who action between the industry and academia is abso- are the research brain of the venture, and at the lutely necessary. Indeed, the distinction between other end are physicians/businessmen, who are the academia and pharmaceutical medicine is becom- money-raising voice of the venture. The pharmaceutical industry R&D these settings, pharmaceutical medicine is needed effort is now leading to Nobel prizes being awarded and the specialist will apply all of the training to those in the industry for pioneering work on components that, as I have already indicated, com- subjects as diverse as prostaglandins, anti-infec- pose this new discipline. The biotechnology indus- tives, and pharmacological receptors such as the try is carrying forward some of the best and histamine and the b-adrenergic receptor. It is moving pure research concepts volved in basic research on receptors, active sites through applied research into development and or genetic code reading sites; those synthesizing new finally to the production of remarkable new thera- molecules; and those testing them in the clinic, leads peutic products. The human is a ally thousands of venture capital efforts and new unique animal which can, and does, exhibit unique companies developing drugs, devices, diagnostics responses to a new chemical entity. Amaz- work can be entirely predictive of a successful re- ingly, this is an industry which has come into sponse in the clinic, and there can, in the end, be no being in the last decade or two. The speciality real sense, the success of these emerging companies lies at the conjunction of changing societal needs will be determined by the quality of their pharma- for healthcare, the burgeoning biosciences and the ceutical medicine efforts. The a specialty which has only very recently become expertise it contains and provides includes basic recognized in its own right as a specialty within sciences such as chemistry and mathematics, ap- medicine. It is a academics within the pharmaceutical industry and career for those who wish to be in the vanguard of Nobel prize-winning work is being done within the research on multiple fronts. It is true that physicians have and devices, as well as with medical aspects of their worked with pharmaceutical companies for many commercial promotion. Although the main focus decades, but during the first two-thirds of the twen- of this chapter is on the activities of pharmaceutical tieth century they were often viewed as either a physicians in pharmaceutical companies, it should necessary evil or a window dressing for respectabil- be remembered that other arenas occupied by this ity. Overlapping disciplines include clinical part-time study, and this may be viewed as the pharmacology, pharmacoeconomics, and biostatis- beginning of organized pharmaceutical medicine. Elsewhere, the American typically within pharmaceutical companies where Academy of Pharmaceutical Physicians (chartered one finds the full spectrum of pharmaceutical medi- in 1994) has become the largest single group of cine being practiced. Given the global, and cross-professional, aspects Administration of pharmaceutical medicine, what, then, can a med- Advertising ically-trained person specifically contribute? A Biostatistics degree in medicine, and some years as a junior Clinical pharmacology doctor, require training that is of unusual breadth Clinical trialist among academic pursuits. An important part of interacting with Informatics the diversity of other professionals is to be able to Information technology Journalism see, and explain when necessary, how one aspect Legal affairs can impact on others.
Malignant cells of neuroendocrine origin express a high number of receptors for various hormones and peptides discount 80mg super levitra with mastercard. Initial results have indicated the clinical potential for receptor targeted radiotherapy buy cheap super levitra 80 mg online. Patient preparation The following steps need to be taken: (a) The patient’s informed signed consent should be obtained cheap super levitra 80 mg line. Reversible haematopoietic toxicity has been seen at higher cumulative doses; no acute renal dysfunction has been seen. Follow-up Patients are monitored at least weekly for a minimum of eight weeks to evaluate toxicity. Repeat scintigraphy for the evaluation of receptor-positive disease is undertaken at intervals of two months. Response evaluation is carried out at quarterly intervals, using identical parameters to those obtained at baseline. Introduction Radioimmunotherapy is a treatment modality, currently under investi- gation, which uses radiolabelled antibodies in the therapy of cancer. This section provides an overview of the current status of radioimmunotherapy and outlines the practical considerations. Physiological basis Monoclonal antibodies against a variety of tumour associated antigens have been developed and shown to target tumours with minimal side effects. Numerous radionuclides have been conjugated to antibodies and the radio- immunoconjugates have been shown to be stable in vivo. Most studies have used radionuclides emitting b particles; a few studies have involved alpha emitters or radionuclides that decay by electron capture. Indications Radioimmunotherapy against lymphoma and leukaemia has been shown to result in major responses in the majority of patients treated, even in chemo- therapy-refractory disease. There have been few major responses in solid tumours, at least at doses that are non-myeloablative. Initial clinical radioimmunotherapy trials were carried out with murine antibodies. Administration of these proteins usually resulted in an immune response, precluding multiple administrations. A significant exception has been radioimmunotherapy using murine antibodies in patients with B cell lymphoma. Developments in genetic engineering have led to the creation of antibody constructs that are less immunogenic, offering the promise of repeated therapy. The safety of antibodies in children has not been conclusively demon- strated; the relative risk should be measured against the potential benefit of such a therapy in treating cancer. Equipment When radioimmunotherapy is carried out with beta emitting nuclides that also emit photons, demonstration of tumour targeting is carried out by gamma camera scintigraphy. As a rule, tumour targeting is more evident at later time points: antibodies are large proteins that clear slowly from circulation, and tumour to background ratios are higher at later time points. No special equipment is required for outpatient therapy, which is usually carried out using pure b– emitting radionuclides. Higher doses of radiolabelled antibodies that emit gamma radiation should be administered in areas that meet radiation protection requirements. Radiopharmaceuticals Antibodies have been conjugated with a variety of radionuclides 131 90 186 188 67 125 211 213 including I, Y, Re, Re, Cu, I, At and Bi. Intact immunoglobulins, usually IgG (Kd ~ 150 000), have been used in most radioimmunotherapy trials. The route of administration is usually intravenous; a few radiolabelled antibodies have also been administered by the intracavitary (intrapleural or intraperitoneal) route; intralesional injections have been studied, especially in intracranial neoplasms. Iodine-131 has a moderate energy beta emission, and its therapeutic efficacy has been well documented in thyroid carcinoma. Its gamma emission of 364 keV also permits external detection, allowing measurement of radiation absorbed dose. Yttrium-90 labelled antibodies are usually administered on the basis of body weight or surface area. The energy of the b– emission of 90Y is three times that of 131I; the lack of a photon permitting external measurement has 90 precluded direct evaluation of the Y biodistribution; this is usually carried out using 111In as a surrogate. To reduce the irradiation of normal tissues, three phase radioimmunotherapy has been found to be of benefit in brain tumours and liver metastases. Action prior to therapy The following steps need to be taken: (a) The patient’s informed signed consent for therapy should be obtained. Therapy As radioimmunotherapy is currently experimental, there should be strict adherence to protocol as approved by the hospital ethics or other oversight committee. Radiation safety precautions should be stringently observed, with particular attention paid to the physiological route of excretion of unbound radionuclides. Where applicable, gamma camera imaging to demonstrate tumour targeting must be undertaken. Post-therapy follow-up Monitoring of the patient for possible side effects, particularly allergic reactions and myelosuppression, should be carried out based on the character- istics of the radioimmunoconjugates under study. An evaluation of the extent of disease should be carried out prior to therapy, and again following recovery from therapy related toxicity, to assess the response. The employment of short lived radionuclides in radiopharmaceuticals poses problems in quality control testing, since it is not possible to complete the necessary quality control testing before the product’s use-by date. This makes it imperative to employ a range of quick validation techniques in order to test the final product; these techniques are outlined in this chapter. A quality assurance programme that takes into account all aspects of preparation is the best way to guarantee a product of the required quality. Three fundamental areas are: (1) Definition of the standards to which the radiopharmacy operates; (2) Standard operating procedures that define the methods to be used; (3) Records of all the work performed. The standard operating procedures need to cover not only the preparation techniques used but also the required environmental parameters and storage conditions, as well as a definition of the way the facilities should be used and maintained, for example operation and checking of radionuclide assay calibrators and safety cabinets. This documentation provides evidence that the department has operated according to its defined standards and also permits the reader to trace the history of all the products it has prepared. In addition, records of receipt and disposal of radioactive materials must be kept in accordance with national legislation. There should be a regular process of review of the documentation to ensure that it is still appropriate and also that all the necessary records are being maintained. Review of retrospective quality control testing records is critical to ensure that the methods and materials used are consistently producing products of the required standard. These include: components of kits for technetium radiopharmaceuticals, target materials for use in nuclear reactors or cyclotrons, adsorbents used in columns inside radionuclide generators, and eluents and diluents used in the preparation of the final product. Since these marerials are non-radioactive, it is possible to carry out extensive testing of their quality in the same way as for normal pharmaceutical products.
Children should be the prime targets for campaigners; older people respond less to health publicity purchase 80mg super levitra mastercard. Counselling of mothers may reduce passive smoking by children in the home; however generic super levitra 80mg with amex, reductions in passive smoking in England since the 1980s is attributable to less smoking parents and not to parents who 2494 still smoke not smoking near their children discount 80mg super levitra free shipping. Advertising , which has its political protectors, should be banned, as it tends to target women and young people, emphasising the ‘stylishness’ of smoking. Counter-advertising should be financially supported and tobacco company sponsorship of sports should be made illegal. Involving teenagers in an anti-tobacco company poster campaign may be effective in reducing the number of youngsters who smoke. England has been much slower than Ireland in this regard, and one Bill suggested that formula one racing should be exempt for four years! The Irish Public Health (Tobacco) Amendment Act 2004 is monitored by an Office of Tobacco Control. Health Boards may take proceedings against persons breaching the provisions of the Act. As of July 1, 2009, anyone who sells tobacco must be registered with the Office of Tobacco Control. There is evidence that legislation for smoke-free workplaces does protect non- smoking bar workers. In February 2006, the British Parliament voted for a total ban on smoking in public places. Many authorities have banned smoking in the workplace, public areas, prisons, and restaurants, except in designated areas. In July 2008, the German Constitutional Court upheld the case of small bars that held that because large bars had enough room to divide off areas for smokers the smaller establishments did not have this option, so throwing the German ban into disarray. Smoke-free workplaces protect against passive smoking and encourage smokers to quit or reduce consumption. Stubbs ea (2004) found that smokers and nurses in an English psychiatric hospital were more permissive toward smoking on wards than were non-smokers and psychiatrists. A short- 756 Requirements of a national tobacco control policy are shown in the box. Components of a national tobacco control policy2497 Increase price of and taxes on tobacco at rate above inflation Ban all advertising and sponsorship by tobacco industry Restrict smoking to designated areas (public places and work sites) Reduce passive tobacco exposure, including in utero Target people at-risk for starting to smoke “Proof of age” cards required when purchasing tobacco; retailers to be banned from selling tobacco (or worse, e. However, despite calls for weaker cigarettes, smokers may compensate for low nicotine yield by puffing more often and deeper, and by smoking more cigarettes. From January 2001 all cigarette packets in Canada carried health warnings that occupy 50% of the front of the pack, although attempts to ban sponsorship of public events by tobacco companies was watered down by the Quebec Court of Appeal in 2005. Changing to cigarettes with a lower tar yield may not reduce the chances of myocardial infarction if one continues to smoke. Young Irish children could until recently readily buy cigarettes from retail outlets and retailers are obliged to ensure that prospective customers are at least 18 years of age. Iran and Uruguay have total bans on smoking in public places, Syria following them in 2009. Some American insurance firms owned by tobacco companies have charged smokers almost double for term life insurance! Tobacco companies pressurised companies producing nicotine replacement products to tone down anti-smoking messages. Tobacco dependence is a chronic disorder requiring repeated attempts aimed at eventual abstinence. Practical counselling and social support are important ingredients in management, as are sustained-release bupropion hydrochloride (e. The present author agrees with Howell (2002) that smoking cessation products should be free to all who wish to stop smoking, not just to those who qualify for medical cards. Further research is needed to determine the efficacy of pharmacological interventions. Many adult smokers started by buying three cigarettes from shopkeepers whilst underage, a failure of the state to protect them. Methyl alcohol (methanol) Mortality from methanol2503 (wood alcohol) poisoning is about 20% because of a metabolic acidosis from toxic metabolites (formaldehyde and formic acid2504). Treatment strategies include gastric lavage, ethanol or fomepizole (competes for alcohol dehydrogenase so inhibiting formic acid production), folate, bicarbonate, and haemodialysis. Isopropyl alcohol (isopropanol, rubbing alcohol) This is found in a number of products, e. It is converted to acetone, which can be detected in breath (odour), blood and urine. It can cause euphoria, ataxia, dizziness, headache, nausea, vomiting, haematemesis, nystagmus, confusion, coma, hypotension, and respiratory depression. Most cases respond to supportive measures; gastric lavage and haemodialysis are options. Ethylene glycol This is found in antifreeze, windshield washer fluid, and radiator coolants. There can be tachycardia, hypertension, pulmonary oedema, metabolic acidosis, hypocalcaemia, myositis, coma, and convulsions. Severe poisoning is an indication for haemodialysis (which means ethanol or fomepizole dose should be increased) or haemodiafiltration. Absinthe This is a green, distilled, highly alcoholic, anise-flavoured spirit derived from herbs (e. Opinion varies on its psychoactivity but it has been blamed for such phenomena as delirium and hallucinations. Rizvi ea (2010) have reported a case of acute suicidality that emerged during absinthe consumption. Vincent Van Gogh (1853-1890) 2507 Epidemiology: Not everyone who drinks (ethyl) alcohol will develop significant problems from its use. For a discussion on whether and how to collaborate with the tobacco industry see Gray. Absinthe is sometimes known as Green Fairy due to its colour and is said to have been a favourite of Oscar Wilde. Also, it is a mistake to view alcohol dependence as an all or none phenomenon – it comes in all grades. Alcohol limits for drivers in the Republic of Ireland, 2009 (from December 1994) 2511 80 mgs/100 mls of blood 35 micrograms/100 mls of breath 2512 107 mgs/100 mls of urine Alcohol limits for drivers in the Republic of Ireland from September 2011 Road Traffic Bill 2009 passed by Dáil in June 2010 20 mgs/100 mls of blood for learner and professional drivers 50 mg/100 mls of blood for other drivers European blood alcohol limits for drivers, 2009 (mgs/100 mls of blood) 0. The proportion of a population drinking excessively is largely determined by the average consumption of 2513 that population. The latter is determined by price,(Kendell ea, 1983; Purshouse ea, 2010) licensing laws , and customs and moral beliefs.
Prenatal counselling and images of disability 201 Research with disabled people During a European project (see Acknowledgements) researchers investigated the views on prenatal screening of physicians purchase super levitra 80 mg amex, midwives 80mg super levitra free shipping, pregnant women purchase 80mg super levitra with mastercard, the general public, experts and reports in the mass media and professional journals. The Wrst, through general questions about their family and friends, education and work, problems, enjoyments and aims, built up a picture of interviewees’ views on the quality and value, and the possible suVering and costly dependence of their lives. As reviews of Medline and other website data-sets show, the medical literature on these conditions is mainly drawn from medical records and research about associated pathology, and from quantitative psychologi- cal surveys of anxiety, depression, intelligence and quality of life. In contrast, we used qualitative methods, a less formal interview style, and open questions asking for detailed replies; we looked for variety instead of measuring common factors. We contacted small groups of people through informal networks in order, we hoped, to avoid seeming perhaps intimidat- ingly professional, and to stress that we saw them as persons rather than patients. Everyone was sent a leaXet before they agreed to take part about the topics we would raise, and about their rights: to consent or refuse; to withdraw or withhold information; and to maintain conWdentiality. We were worried at Wrst about whether we should risk asking questions that might be painfully probing, but we were soon reassured by the responses; almost everyone talked calmly and frankly as if they were used to discussing issues such as screening for their condition. The 50 interviewees Cystic Sickle Spina Down’s Conditions Thalassaemia Wbrosis cell biWda syndrome Interviewees 10 10 10 5 5 Men 5 2 6 1 4 W om e n Age range 26–39 17–30 21–33 18–33 20–43 Median age 33 24 29 26 30 Mainstream school 10 9. This worked very well, as the previous discussion had helped to order and clarify their views, and the sheets gave them some editorial control over how we would use their views. In contrast to mainstream medical and psychological traditions, our ap- proach, methods and language yield diVerent and, we would argue, more realistic insights into the daily lives of people with serious congenital condi- tions. Among the people with Down’s syndrome, for example, one helped to run a youth club, one taught on courses about empowerment, assertion and safer sex for people with learning diYculties and was an artist, and two were actors who shared in creating plays about disability and genetics. Qualitative research such as this study cannot produce measurable, generalizable Wndings about the abilities and experiences of these Wve groups of people. Yet the study can challenge general assumptions, by showing how these interviewees did not Wt the negative images propounded in the prenatal medical literature. I was worried when he showed me into the family living room where his sister and girlfriend were already sitting, as I expected that their presence would inhibit him. I avoid the standard research practice of asking families to regroup to allow for a private interview, partly because their decisions and family dynamics are such useful data and partly because I would assert a potentially inhibiting power balance. During the interview he spoke about his shorter life expectancy, and when the young women objected he said that they always avoided the subject, but he wanted to talk about it with them. Like other interviewees he tried to make his employment record at least as good as that of his colleagues, to prevent his condition being used as an excuse to dismiss him. Like many of the interviewees, when asked about his hopes and aims, Tim spoke freely about being a partner and becoming a parent, spontaneously raising these issues and relieving me of the worry that I might upset or embarrass him by introducing them. Jane was delighted to return to work and to caring fully for her family after her recent heart transplant, but others were frustrated at not being able to Wnd suitable work. Having returned to live with her parents, she would ‘like to be able to do things more spontaneously, have more energy, spend less time with my parents and have more self-identity, be stronger and more conWdent’. Jenny said that she would love to be married and have children but felt that no one would want to take on the responsibility of caring for her and that she was not strong enough to have a child. It has stopped me from making plans and getting on with my life, like going to university or doing things which might be boring for a few years but lead on to something better’. Asked what he might want to change about himself, again like some of the others Rob replied, ‘I’m happy with my character, I’m very happy with what’s happening in my life at the moment’, and he was more keen to talk about how to change society. For example, one man with Down’s syndrome described being pushed and shoved in the street by his neighbours, and another was fed up with being Prenatal counselling and images of disability 205 treated by new work colleagues as if he were stupid, though he added, ‘They learn in the end, and then they realize that are the ones who look silly’. Their conditions did not appear to dominate their lives in most cases, and much time was spent talking about the many things they had in common with their ‘ordinary’ peers: work or unemployment, income, housing, relationships, leisure activities and ambitions. The other more disabled people with spina biWda included a young single mother who was also a college student, and Richard and Vivian who both used wheelchairs. He enjoyed going to city clubs with friends, and could haul himself in his chair up and down stairs, so he used underground trains despite oYcials trying to stop him. He said that when he joined mainstream secondary school, the wheelchair users were all taught mobility and coping with stairs and pave- ment kerbs, which helped him to become very Wt. You do feel low and in pain and angry with people and it is important to have friends and to go out for a drink’, and she talked enthusiastically about her many interests. Vivian was planning to have a baby and she talked of her mixed feelings about taking folic acid to reduce the risk of the baby having spina biWda, yet ‘being proud that I have spina biWda’ because it had given her such experience, knowledge and opportunities she would not otherwise have had. They also tended to say that they would respect any decision made by prospective parents after being properly informed, whether to continue or end a pregnancy aVected by their condition, though they hoped the pregnancy would continue and some had mixed feelings. For example, two men with Down’s syn- drome, who had been talking intently about their acting, suddenly looked very sad when asked about screening, and said they did not want to talk about it, as if the subject was too painful. However, the interviewees had far more similarities than diVerences, including the ways they reXected on their lives, and their belief that they suVered from the general stigma of disability more than from their actual condition. This raises questions about why the prenatal literature, policy makers and counsellors make so little mention of the potential range of each condi- tion from mild to severe, of the increasingly eVective treatments which Jenny mentioned, and of the possibility that some therapeutic abortions may prevent potentially rewarding lives. A further complication for prenatal predictions is the mismatch, shown particularly by the people with spina biWda, between the degree of severity of physical disability and the way people value and enjoy their lives. Prenatal counselling and images of disability 207 The implications of the interviews for prenatal counselling and maternal–fetal relations The overall impression given by the interviewees was of very interesting, thoughtful and pleasant people. Most of them appeared to value and enjoy their lives, sometimes despite pain and serious illness, as much as any average group of 40 young adults might say they do. One man with sickle cell anaemia was in such pain that his interview took place over three separate visits, but this was because he was so keen to take part. Their friends appeared to value them, and so did their families, with one exception as might be expected in any group of 40 adults (her mother had died and her father had remarried). Most interviewees had far more in common with their ‘ordinary’ peers than diVerences, and none showed any clear reason why their life would have been better prevented. Even allowing for the artiWcial nature of the research interview, and the way our methods partly shape the evidence, as is inevitable in every type of research, the interviewees provide compelling evidence for questioning the assumptions on which prenatal policies and counselling are based – that it is reasonable to prevent such lives. The interviewees challenge the view that it is kinder to terminate any aVected pregnancy, however mildly the fetus might be aVected, because life is so awful for the severest cases. Repeatedly, interviewees spoke of the crucial importance to them of being involved in mainstream society – schools and colleges, homes and jobs, clubs and pubs and friendships. They tended to stress their need to see beyond their condition as a personal predicament, and to press for greater inclusion by challenging negative attitudes in society, and by showing how they could be involved. They were grateful to parents who encouraged them to be strong and who, as one woman with Down’s syndrome said of her mother, were ready to ‘Wght for my rights [even through] the High Court, the High Court of Justice! Some of them helped to train medical students, and they criticized inaccurate medical images of disability, such as the sickly child advertisements that raise funds for medical research. Richard was referring to a theme that ran through the interviews – of adaptation, ingenuity and a resilience that grows through accepting and surmounting diYculties. This is in contrast to prenatal screening policies which propose eVorts to prevent and avoid diYculties, as if human beings cannot or should not have to experience them, and as if disability is not inevitable for most human beings, at least at the beginning and end of life. The interviewees quoted earlier suggest that this approach is unrealistic, because ordinary people’s lives so often involve problems – such as with relationships, loss, frustrating limitations or poverty. Fearful avoidance of disability, rather than promoting ways to support disabled people’s lives, is liable to diminish people rather than freeing them into new achievement and conWdence. The diYculty in these criteria is the current limitations in predicting how severe an impairment might be or might become, how much it may be ameliorated by social or medical support, and how the aVected person and family may experience similar diYculties either as hardship and suVering or as part of a worthwhile rewarding life. Some parents value their Prenatal counselling and images of disability 209 child’s very short life far more than no life at all (Delight and Goodall, 1990).
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