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Contents
CLINICAL PSYCHOLOGY
RESEARCH - THE HEART & TS
DEPARTMENT FOR WORK & PENSIONS’ FACTSHEETS
Do You Know?
MEDICAL INFORMATION ON THE INTERNET
“All you need to know but didn’t like to ask”
This information has been prepared for people who have a medical condition that affects their reproductive system or sexual development and who are considering consulting a clinical psychologist. It provides the answers to some of the most commonly asked questions about clinical psychology.
Clinical psychologists work with people of all ages, most commonly in health centres, clinics and hospitals. Clinical psychologists use their knowledge of behaviour, emotions and thinking, to help people with psychological problems. They are not medical doctors and do not prescribe drugs. All clinical psychologists have to study for a general degree in psychology first. Once graduated they are usually required to get work experience in research or clinical settings before being considered for clinical training. If selected for an accredited training programme, they go through another three years of clinical psychology training leading to a professional doctorate.
Nowadays most trainee psychologists are salaried employees of a Health Authority. They are taught on a recognised training course and see clients under regular supervision by a qualified and experienced psychologist.
Clinical psychologists may simply, but importantly, provide an opportunity to talk and think about things that are confusing and worrying. They would also discuss with you different ways of understanding or interpreting your problems or situations. Clinical psychologists are trained to use a range of different approaches aimed to help you become more expert about yourself, and more able to overcome or cope with life problems. The types of work they do and the approaches that they use depend on the speciality they work in.
At the moment most clinical psychologists work in one or more of the following services: adult mental health, child and adolescent, older adults, learning difficulties, primary care, long term mental health, health psychology [general medicine], substance misuse, neuropsychology and forensic psychology.
At your first meeting you will have the opportunity to talk about your difficulties and to ask questions. The clinical psychologist will also ask about other aspects of your life so as to get a more complete picture of you as a person and your situation, and not just your medical and psychological problems.
After one or two meetings, the clinical psychologist will discuss with you whether or not further psychology sessions are likely to be useful. If further sessions are agreed, the clinical psychologist will recommend a particular type of approach or therapy based on your individual need, and this will be discussed with you. Some psychologists who specialise in work with children would routinely see the whole family. In adult services this tends only to happen with prior agreement. In some services you may be offered the opportunity to take part in a group for people with similar problems.
A clinical psychology session usually lasts between 40-60 minutes. This could take place on a weekly, fortnightly or monthly basis but often the intervals vary. The sessions usually extend over weeks and months rather than years. Early on you would discuss with the clinical psychologist roughly how long the sessions would continue for and you may agree a ‘contract’, for example 10 sessions with a review in the middle. However you are free to end the sessions at any time if you wish.
The information that you provide is confidential. However a clinical psychologist would routinely write to your GP and/or the person who referred you to summarise the outcome of your contact with the service. If you have queries about confidentiality do discuss this with the clinical psychologist. Your clinical psychologist would take action if there were a serious risk of harm either to yourself or other people. If this was the case you would, if at all possible, be notified that confidentiality was to be broken.
As well as tackling the more commonly presented psychological problems such as depressed mood, anxiety, stress, bereavement, psychological approaches can be used to address the following areas which may be particularly relevant for people who have conditions affecting their reproductive or sexual development:
Communication [e.g. increase effectiveness in social situations]
Self-identity [e.g. improve self-esteem and body image, explore sexuality]
Relationships [e.g. identify and deal with relationship or sexual difficulties]
Self management [e.g. develop healthier eating or activity patterns for optimal health, increase personal independence]
Work with couples, families or groups
A clinical psychologist who is unfamiliar with your condition could still offer valuable support. It could help if you were to send in some information about your condition, or a medical report, before the initial appointment.
There are no quick fixes and this can be disappointing.
Certain things in life cannot be changed, and sometimes it is other people or society that should change. In the mean time, it is possible to learn to live more comfortably with yourself, and to make the most of what can be changed.
The truth can be unpleasant, even though increased awareness of ourselves can lead to a greater sense of control over aspects of our lives. Furthermore, learning something new about ourselves could mean not being able to behave in the same old ways, so alternatives would have to be contemplated. Or, you may become more uncomfortable about avoiding aspects of life and need to tolerate new experiences.
In order to change the way you think, feel and behave, you may be asked to do some work between sessions. Tasks are always agreed beforehand so you are in control of the timing and nature of them.
Above all, bear in mind that important personal changes take time and effort and sometimes sacrifice. Finally, it is sometimes only possible to partially address the problems in therapy, and the process may need to continue throughout life. Is it helping?
Don’t expect to feel dramatically better right away. Some people do, because being listened to and being understood can bring a huge sense of relief. If that happens don’t be surprised when the dramatic effect does not continue, it may simply mean that you are beginning to get into the nuts and bolts of the difficulties.
However, you should expect to:
Feel comfortable with the therapy situation soon, if not right away;
have confidence in your therapist;
feel that, in time you are gaining new insight into your past experiences and your current ways of thinking and behaving;
begin to solve problems taking a step at a time;
feel more in control of aspects of your life.
If you don’t feel as if you are getting much out of your therapy, don’t assume it’s your fault. Try and talk it over with your therapist and it things don’t change, perhaps the timing is not right or perhaps you need to see someone else. If you have not had a good experience with a therapist in the past, don’t be put off from trying again.
Clinical psychology training is characterised by certain philosophies, to what extent these are important at a practical level is for the service to decide.
All clinical psychologists start off by studying normal development and functions before they can specialise in problem areas, while professionals such as psychiatrists, psychotherapists and counsellors tend to focus on clinical problems right away.
All clinical psychologists are trained to use a scientific approach to ask questions about human experience, and to develop general principles about our thinking, feeling and ways of behaving. They must also learn methods to evaluate to what extent these principles apply to any particular person or situation. This aspect of training is at the moment more variable in other professions.
Clinical psychologists are taught not just to practise techniques. Instead their work should be driven by clear hypotheses about the problems and explicit goals. This is again more variable in other professions.
Most therapists are trained to work with the adult population. Clinical psychologists are trained to work with people across the lifespan and at the moment this is fairly unique.
Clinical psychology training - as opposed to therapy training – aims to enable practitioners to work not only with the individual but also to teach and train others, to develop systems, and to test things out in research. For these reasons, psychologists would seldom identify themselves as a therapist – the idea is that they also do other things. However, being trained in a variety of methods may be at the expense of more in-depth training in a particular type of therapy. Thus an accredited and experienced psychotherapist or counsellor trained exclusively in, say long-term psychoanalytic therapy, would be more grounded in that particular way of working. And indeed clinical psychologists sometimes refer clients to other health professionals.
There are tremendous local variations but in general, most NHS services are accessed through the GP. Some GPs refer directly to clinical psychologists working in primary care, while others refer patients to the community mental health teams which are made up of psychiatrists, psychiatric nurses, social workers, occupational therapists, psychologists and others. If you are referred to a team, it is possible to request help from a specific practitioner.
There is usually a delay between referral and the first appointment, so don’t leave it to the last minute to get referred. In some areas it may be easier to access a counsellor or other type of therapist. Do consider having psychological support from other practitioners. Try and see an accredited and experienced therapist – the complexity of your medical condition justifies this. Don’t forget that you are entitled to ask your psychologist or other practitioner for their credentials.
Lih-Mei Laio, MSc PhD AFBPsS
Consultant Clinical Psychologist &
Honorary Senior Lecturer
Dr.Julia Ostberg writes
The final collection of data is now underway on the Heart & TS research project. Although the project is approaching it’s conclusion and is nearing the time of publication there is no official news to report at this stage. Following the official publication the TSSS will be one of the first groups to know the project’s outcome. This may be in time for the publication of the next newsletter in September so please watch this space !!!
However it can be revealed that as the project is coming to the end of data collection and is in data analysis stage there do appear to be some interesting themes emerging. One hope is that the data may give some insights into diabetes in TS which could ultimately help to decide on the best form of treatment.
In addition the oestrogen study is now complete and it has been interesting to see that some women definitely felt much better on higher doses of oestrogen, although this was not a universal finding. Many of the women who took part said that they had been glad to have the opportunity to try different doses, and this suggests that, in general, women with TS should be encouraged to try different preparations and different doses of oestrogen if they are not entirely happy with what they are taking.
(Ed’s Note : TSSS are indebted to Elsa Tessadri a Learning & Development Officer in the Department for Work & Pensions for being able to publish some important DWP factsheets which will be of benefit to our members. The first one concerns Disability Living Allowance and is printed below. The second of the factsheets which concerns Carer’s Allowance will be published in September’s ASPECTS)
Disability Living Allowance (DLA) is a tax free benefit payable to someone who needs regular help with personal care and/or has difficulty in getting around due to a physical or mental illness, or disability.
DLA is made up of a care and/or mobility component.
Examples of help with Personal Care may include: washing, dressing, preparing meals and communicating with others.
This component can be paid on its own, or combined with the Mobility component, depending on circumstances.
Examples of help with Getting Around may include: not being able to walk at all, needing assistance when outdoors due to a visual or hearing impairment, requiring supervision when visiting unfamiliar places.
This component can be paid on its own, or combined with the Care component, depending on circumstances.
Adults under the age of 65 who have needed help for at least 3 months and are likely to need help for at least a further 6 months.
Children (i.e. under 16) over 3 months old who need more help and supervision with personal care than other children the same age.
Children over 3 years old who need help with the getting around element only.
The rates and the amount payable will be determined by the level of help and supervision required. For example, you or your child may need help in the day only, at night only or both day and night.
Current Rates (from 12th April 2004)
Care Component (weekly amounts)
Highest Rate £58.80
Middle Rate £39.35
Lowest Rate £15.55
Mobility Component (weekly amounts)
Higher Rate £41.05
Lower Rate £15.55
NB – The above should be used as a guideline only.
DLA will be in payment as long as your circumstances remain unchanged. Your claim is reviewed (normally annually) and any change in your situation will be taken into account.
DLA is not a means tested benefit. Therefore, DLA is not usually affected by savings or other money coming in.
DLA can be paid alongside the following benefits:
Income Support
Incapacity Benefit
Jobseekers Allowance (Income Based)
Pension Credit
State Pension
Severe Disablement Allowance
You will need to complete claim form:
DLA1 Adult (for those aged 16 and over)
DLA1 Child (for children aged under 16)
You can obtain the form from your local Jobcentre Plus or Social Security Office.
Alternatively, you can download and complete the form on-line (see “How Can I Find Out More” for details).
DLA is normally paid direct into a Bank, Building Society or Post Office account every 4 weeks. (If you are claiming DLA for a young child, the DLA is payable to that child, but via your account).
The claim form is very comprehensive. The on-line version of DLA1 is 48 pages long. Be prepared to answer very intimate questions about yourself or your child in great detail. Do not let this put you off. The questions are designed to establish the level of help required and to determine which component(s) and rate(s) apply in your circumstances. Failure to complete the form fully may result in a delay in processing or the incorrect amount being awarded to you.
In some cases, depending on your circumstances, a medical examination may be required. Medical Services will arrange this. Also if you care for someone who receives DLA, you may be able to claim Carer’s Allowance (see separate factsheet and next ASPECTS)
You can contact your local Jobcentre Plus or Social Security Office (leaflet DS704).
Visit the DWP website at www.dwp.gov.uk
You can access more detailed information on
DLA and complete a claim form on-line via
the “Benefits & Services A-Z” tab on the
home page.
Telephone the Benefit Enquiry Line. This is a helpline that will be able give you general advice only. They will be able to answer general queries and can assist you in completing the claim form if you have particular difficulties or require clarification.Tel no: 0800 88 22 00
MedicAlert is a non-profit making registered charity providing a life-saving identification system for individuals with hidden medical conditions and allergies. This takes the form of body-worn bracelets or necklets bearing the MedicAlert symbol on the disc and supported by a 24 hour emergency telephone service. Each member receives an Emblem that is engraved with the wearer's main medical condition[s] or vital details, a personal ID number and a 24 hour emergency telephone number which accepts reverse charge calls that can access their details from anywhere in the world in over 100 languages.
Examples of who would need MedicAlert are those who have any type of hidden medical condition [diabetes for instance], have an allergy, have had any type of implant, take regular medication or would simply want someone else to know if they have been involved in an emergency. Annual membership is £15 per year and the cost of bracelets and necklets vary according to the design and material. For more information call 0800 581420 or email: info@medicalert.org.uk or visit the website www.medicalert.org.uk.
Did you know that from April the 1st this year you should receive a copy of any letter about you or your child’s care that is sent between the doctors treating you or your child. Well in theory you should, but it has been reported in the national press that this is not happening. However, if they fail to do this routinely the Department of Health says that you have every right to complain.
Did you know that it may be possible to get help to attend the Conference if you are experiencing difficulties with the cost of travel and accommodation? You may be eligible for a grant from the Family Fund to cover these costs. There are criteria to be met – the family’s earned income has to be less than £23,000 and have a child with a severe disability it is possible that TS may qualify. For more information about these criteria or to make an application phone the Family Fund helpline on 0845 1304542 or check their website www.familyfund.org.uk the website is also worth visiting for the other information it contains which may be helpful.
Don’t forget you can purchase TSSS pens & lapel badges for £1 per item & bookmarks for 50p each to help raise funds for the TSSS.
(Ed’s Note : the following article is reproduced with the permission of ‘Contact A Family’. The article, which provides excellent advice on how go about obtaining trustworthy medical advice on the internet, first appeared in Contact A Family’s magazine. TSSS would like to thank CAF for allowing us to print the information and my thanks go to Corinne for doing such a great job on editing the information)
Turner Syndrome has such a wide variety of symptoms, and searching the internet for information can be a minefield if you don’t have proper advice on what can be helpful.
People have been known to order drugs and other treatments through the internet without seeking a diagnosis from a doctor. In one well known case an internet surfer suffered acute kidney failure after drinking oil of wormwood obtained on line.
People using the Internet to find medical information need to evaluate what they find before deciding what information is useful for them. The date it was written, the author, together with details of their qualifications, and the source of the material are some of the important items to look for. If information is outdated or not verified it is difficult to tell what is medically accurate and what is personal experience.
Contact a Family and the Information Management Research Institute at Northumbria University have produced advice for people looking for medical information on the Internet and for support groups planning or revamping web sites. The guidelines produced by the ‘Judge: Web Sites for Health’ project can be found at http://www.judgehealth.org.uk.
Contact a Family’s directory is available both in print and online, with up to five free entries accessible a month. Their helpline number is 0808 808 3555.
All Contact a Family medical texts carry endorsements in this format: Medical text last updated January 2004 by Professor Dian Dommai, Consultant clinical Geneticist, St Mary’s Hospital, Manchester, UK.
The project is supported by the Centre for Health Information Quality, http://www.hfht.org/chiq, the producers of the highly acclaimed HiQuality Guidelines on health information quality: http://www.hiquality.org.uk.
Contact a Family also subscribes to the guidelines of Health on the Net. These can be found on their site: http://www.hon.ch, which gives a quality mark for sites following the guidelines.
‘My Story’ sites are Internet sites developed by individuals or families who have a specific disorder. Some of these sites are of a high standard with excellent links to verifiable hospital and university sites. However, even if they indicate that the medical information has been checked by an expert, this may be specific to that individual or family member and not be typical. These sites often give the name of a medical expert and you can then get in touch to check on the general nature of the disorder.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed is a service of the National Library of Medicine. It provides access to over 11 million documents dating back to the mid-1960’s and additional life science journals. As articles cover human and animal subjects, foreign language articles and 40 years of information, you may wish to define your search narrowly. Under the main search window, select Limits and fill in the range of information you need using the check boxes; also make use of the very informative Help/FAQ option in the side bar.
Further Online Resources
http://www.cafamily.org.uk Gives details of Contact a Family’s work, printable fact sheets and the online version of The Contact a Family Directory.
http://omni.ac.uk Access to fully evaluated health sites.
http://www.nlm.gov/medlineplus/encyclopedia.html Extensive medical encyclopaedia from the US National Library of Medicine.
http://www.nlm.nih.gov/mesh/jablonski/syndrome_db.html Extensive range of information on learning disablement disorders from the US National Library of Medicine.
http://www.nlm.nih.gov/medlineplus/healthtopics.html Further information and articles on a wide range of medical topics and specific conditions.
http://www.nih.gov/icd Gives links to all the US National Institutes of Health; many of them have very extensive databases.
http://www.rarediseases.org/search/rdbsearch.html The site of the National Organisation of Rare Disorders gives access to a database of abstracts of its information on a wide range of disorders as well as support networks.
http://www.doh.gov.uk/research/nrr.htm Gives details of current NHS research funded in the UK.
http://www.doh.gov.uk Index of all government organisations such as the Department of Health; information and full texts of DoH publications, Health of the Nation targets, helpline etc.
http:/www.nelh.nhs.uk UK National electronic Library of Health. Has a wide range of information available including Specialist Libraries for Cancer, Child Health and Learning Disabilities.
http://www.nhsdirect.nhs.uk The online arm of the UK National Health Service.
http://bpsu.inopsu.com The British Paediatric Surveillance Unit site.
http://www.ich.ucl.ac.uk Link to the UK’s foremost children’s hospital.
The above are extracts from the Contact a Family Directory 2004.
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