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Contents
CLINICAL PSYCHOLOGY
RESEARCH: Eyes and the Turner Syndrome
SOUND FAMILIAR
OSTEOPOROSIS
“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
from Marian Masters
Some of you may remember helping with some research, which I did with the help and funding from the CGF in the late 1980s? This was published in the British Orthoptic Journal in 1990 and followed by a talk that I gave in 1991 at an international orthoptic conference. Unfortunately this work was lost to the general medical world because of restrictions at that time on information from the British Orthoptic Journal.
Here is the good news. Dr Alastair Denniston, who works not far from me in Birmingham, has written a letter to The Lancet reporting various pieces of research about the eye conditions that can be related to Turner syndrome. On the whole the eye problems he has written about and their frequency of occurrence match well with my results, although the series are much smaller than the one which you and I did with the help of orthoptists all over England.
Conditions he mentioned are weaker vision in one or both eyes, squint or turn of an eye, droopy eyelids, wide-set eyes, long-sight, short sight, and colour deficiency. Other aspects, which seemed to be fairly common and important in the 1990 survey, such as pronounced sensitivity to light and some weakness of near focus, are not mentioned. Changes in the globe (eyeball) itself, many of which we also noted, are mentioned. These are changes like glaucoma, cataracts, changed shape of the lens or the front of the eye (cornea) and in the blood vessels at the back of the eye.
Dr Denniston felt that more accurate information about the type of Turner syndrome, that is the karyotype, would be of value in determining the type of problems that may occur. He also noted that Koller and colleagues reported in the Journal of Clinical Endocrinology & Metabolism in 1998 two cases of changes in the retina at the back of the eye following treatment with growth hormone. If this is something that can happen, however rarely, everyone who has growth hormone ought to have regular eye checks.
We can help to move knowledge and the visual safety of our children forward! When I did my research very few people knew what their Turner karyotype was, or even what type of hormone therapy they were having. Now we are much better informed. Would you be happy to let me know details such as your karyotype and treatment and even to partake in a new survey if we can interest Dr Denniston in carrying one out? If so please let me know. It would be good to hear your views. Please contact me via the TSSS office.
[Ed’s note:- this is an important issue which we need to follow up, please contact Marian if you are willing to help. We hope that Dr Denniston will accept an invitation to come to the Conference this year]
As always the Editor is delighted to be able continue this popular column. It is apparent that members are benefiting from sharing their experiences with others. It takes courage to share sometimes painful experiences but in doing so it can give hope to others. Sarah has written to us about her daughter Kirsty.
“Dear Editor,
I enjoy reading the information contained in ASPECTS. I would like you to print my story about my daughter and her speech problems. I wonder if anyone has a similar experience? Kirsty was diagnosed with TS when she was 3. She was very slow to speak and started attending speech therapy when she was 2. At this time her delay in speech was attributed to her frequent ear infections which left her with moderate hearing loss most of the time. Eventually she had her tonsils and adenoids out and grommets inserted. The speech therapist said this would help with her speech. She did come on a lot, managing to group words together and form sentences like other children of her age. She started nursery when she was 3 and this also helped. However she was very difficult to understand. After she was diagnosed with TS the speech therapist said her speech problems were due to a learning delay coupled with the hearing loss. We carried on going to speech therapy for the next 2 years. Her language skill really improved but the articulation was hard for her in certain areas and she was still hard to understand. The hardest sounds for her were "S,TH,G,F" For instance she would say "DOD" instead of "DOG". She completely missed out S and F sounds e.g." NINISHED" instead of “FINISHED". Anyways, it got to the point where Kirsty and the speech therapist had come to the end of the line, frustration taking over on both sides. The speech therapist asked if we would see a colleague of hers who worked with children with cleft palates. What a revelation! After only counting to 10 once and reading 4 short sentences, she reckoned that Kirsty had a palate problem, and simply did not have the ability to make the sounds she struggled with. She was referred on to a plastic surgeon who carried out X-rays and a nasoscopy. This showed that Kirsty had an exceptionally high and short palate and that she had a partial cleft palate. There was a cleft in the muscle structure of the palate but the skin and bone structure were normal, reasons for it not having been picked up before. The next step? Well that involved surgery to her palate, initially to correct the cleft, but there was also the chance of elongation of her palate if required. We were a year on the waiting list, which was very frustrating, but eventually in February 2001 she had the operation. She went in on Wednesday, had the operation on Thursday and home on Sunday. It took a couple of months for us to be convinced that the operation had worked, but now we are delighted!! She can say words with "S" etc. and in fact has began to read far better now hearing the letters she is saying. The doctors are delighted with her speech, and don’t feel that any further surgery is necessary. It was a long journey for us all with many frustrating times, especially for Kirsty. I hope that our experiences can be of help to someone, if you have a child with problems with their speech, then just maybe she has the same problem as Kirsty, it might just be worth mentioning it to your specialist.”
A TSSS member has written to us with her concerns. We think they are extremely valid and print her letter below.
“Dear TSSS, I am 40 years old and have TS, I was diagnosed when I was 16. I am a radiographer working in a Bone Metabolism Unit. My job consists of scanning patients for osteoporosis. It has come to my attention that a lot of girls with TS do not know or realise how important it is to get a bone density scan to diagnose osteoporosis early.
Girls and women with TS have a high risk of developing osteoporosis because we do not have ovaries. Not having ovaries producing oestrogen makes us menopausal. Oestrogen is very important in maintaining bone density. Bone is living tissue and is constantly being built up and then lost and oestrogen helps maintain this balance. There are no symptoms of osteoporosis; so you can have osteoporosis and not know. Osteoporosis develops over many years and it is not until you are older that it manifests itself by breaking bones or loss of height because the bones in your spine have thinned and you have crushed vertebrae. To prevent osteoporosis and have a good quality of life it is important to be tested for osteoporosis and have preventative treatment in the future such as HRT.
A bone density scan is very quick and only takes about 10 minutes. The patient lies on a table and a pad positioned under the knees for a spine scan and then the left or right hip is scanned. You do not need to remove your clothes, a very simple procedure.
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