Langdon Down Centre – December 2015

We have a number of exciting events happening at Normansfield Theatre and the Langdon Down Centre throughout December. Tickets are on-sale now for all events listed below.

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Opera Encores / Commedia Productions
Saturday, 21 November, 7.30pm
Tickets: £20 and £16 (concessions)

Following the success of Opera in Cameo, Commedia return to present an entertaining guided tour through the evolution of opera. The evening is illustrated by staged popular scenes and features a company of professional soloists accompanied by The Virtual Reality Orchestra.

Commedia have more than 15 years of experience in the presentation of fully staged musical theatre. Press and audiences have enthusiastically applauded the company’s innovative approach and reviews in the national media have referred to their productions as “a luxury you can afford,” “the most imaginative production I have seen” and even “the future of opera”.  Initially, productions were traditionally presented, in the original language and setting with full chorus and orchestra. In recent years the trend has been towards a more accessible approach with the use of new and original translations and the implementation of the Virtual Reality Orchestra.

Tickets are available online or by calling 0333 1212 300 (Mon to Fri 9am to 5pm)


Craft Fair

Normansfield Christmas Craft Fair
Saturday, 28 November 2015, 11am to 5pm
Admission: Free
(
£2.50 for children’s activity room)

Normansfield Theatre will become a magical wonderland of Christmas crafts and gifts.  We’ll have 30+  stalls selling cards, prints, gifts, ornaments, tableware, food, christmas decorations, handbags and so much more; all perfect for a Christmas present!  We’ll also  have a coffee shop selling delicious refreshments and books; a tombola and a children’s craft activity room open all day.  For a small charge, the children can make a ceramic Christmas decoration or sand art sculpture (the price includes all materials).

ENTRY IS FREE so please pop in and support this lovely event!


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Il Barbiere de Siviglia / Villa InCanto
Sunday, 29 November 2015, 7.30pm
Tickets: £20 and £16 (concessions)

Rossini’s ever popular comic opera is a tuneful masterpiece.  It tells the tale of quick thinking barber, Figaro, who is paid to help a Count, Almaviva, to win the woman of his dreams. Almaviva needs to disguise himself more than once to outwit the Guardian of Rosina (a perfect young woman as long as you don’t get in her way!).  Figaro, of course, will do all he can to ensure that, despite all the guardian’s attempts, Rosina does indeed end up in the arms of the dashing count.

Tickets are available online or by calling 0333 1212 300 (Mon to Fri 9am to 5pm)


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Down’s Syndrome Association Christmas Concert
Tuesday, 8 December, 7pm
Tickets: £20 adults, £15 (concessions), £10 (children under 12)
Price includes a drink on arrival.

This year the evening will be a mix of dance, song and readings from a few special guests to get you in the Christmas spirit!  Tickets will go on sale on Monday 2 November.  Your ticket price includes an arrival drink and a fantastic evening’s entertainment.  A cash bar will operate during the interval providing snacks and refreshments.

Tickets are available online or by calling 0333 1212 300 (Mon to Fri 9am to 5pm)


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Semele / Isleworth Baroque
Friday to Sunday, 11-13 December, 7.30pm
Tickets: £15

Singers and musicians from Isleworth Baroque present Handel’s version of this story taken from Greek mythology.

Semele, a beautiful but unsophisticated maiden, falls in love with the god Jupiter and discovers the “endless pleasure, endless love” of the heavens.  Jupiter’s wife Juno is understandably unhappy with the situation and plots Semele’s downfall.

Tickets are available online at or by calling 0333 1212 300 (Mon to Fri 9am to 5pm)

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Posted in Langdon Down Centre

The importance of eye tests for adults with Down’s syndrome

By Vanda Ridley, Down’s Syndrome Association

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Problems with vision are found in up to 60% of people with Down’s syndrome and as in the general population, the eyesight of a person with Down’s syndrome is likely to deteriorate as he or she gets older.

As with hearing loss, deterioration in someone’s vision is likely to make them feel confused and vulnerable. Sight loss in adults with Down’s syndrome can be a gradual decline or can be fairly rapid (often, for women, triggered by the menopause). In addition to checking regularly whether glasses are required for reading or long distance (doctors recommend every two years for people with Down’s syndrome) your optometrist should also be checking the following:

  • Cataracts The occurrence of cataracts (opaque formations in the lens of the eye) in people with Down’s syndrome in later life is well established. These can be removed and artificial lenses put in place instead under local anaesthetic.
  • Glaucoma This is a condition where pressure builds up in the chamber of the eye and causes damage to its main nerve. If the pressure is higher than usual, treatment is available in the form of surgery and/or medication. Whilst glaucoma can come on suddenly with severe pain in the eye and loss of vision, in later life it more commonly develops slowly and therefore goes unnoticed, certainly in the early stages. Symptoms to watch out for can include enlarged or differently sized pupils.
  • Macular degeneration This is a deterioration of the light sensitive surface lining; a particular part of the inside of the eye. This deterioration can be detected by eye examination. The progression of macular degeneration tends to be slow and at present there is no routinely available treatment.

DSA publications Eye Problems in Children and Aging and its Consequences will provide further details. You will also find resources on the Vision pages of our website.

If you support an adult who has Down’s syndrome, please encourage them to have regular eye tests. The charity SeeAbility has a guide to looking after your eyes, written for adults with Down’s syndrome. This explains the importance of regular eye tests, what to expect at an appointment and the eye conditions found in people with Down’s syndrome.

If the person you support is unable to let you know verbally that  they are experiencing difficulties in seeing, changes in their behaviour could denote visual difficulties. If you notice changes in behaviour and are concerned about the vision of the person you support encourage them to make an appointment to have an eye test. Indicators could be:

  • Anxiety in unfamiliar situations
  • Hesitancy on steps, at pavement edges or in poorly lit areas
  • Depression, anger or frustration
  • Reduction in social or domestic skills in participation
  • Loss of interest in family, friends, TV or social activities
  • Undue alarm at unfamiliar noises or when approached

If you are looking for a high street optician to carry out the test it is important to remember that it is a statutory requirement under the Equality Act 2010 that reasonable adjustments should be made to accommodate the needs of someone with a learning disability when having their eyes tested. This might include a longer appointment so the person with Down’s syndrome has more time to understand the process of the test and become comfortable in their surroundings. Guidance from the Royal College of Ophthalmologists gives examples of what to expect from a good service.

Further information can be found on a range of issues on the DSA’s Vision pages

Posted in Health

Eye Examinations for Children with Down’s syndrome

by Simon Berry, Optometrist

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New research has meant that we now understand a lot more about the difficulties that some children with Down’s syndrome have with their eyesight. An eye examination is an important part of a general health check and should be a regular occurrence for all children.

There are some specialist areas for Optometrists (Opticians) to think about when examining a child with Down’s syndrome. It can sometimes be difficult for parents to know if their Optometrist has the relevant experience and knowledge in this area.

This guide is designed to help you discuss with your Optometrist any concerns you may have. It is a general guide and can never completely include all situations and all children. It should be used as a starting point for any discussion and does not override professional advice.

The Eye Examination

Many parts of an eye examination are as relevant to a child with Down’s syndrome as they are any other child. In general, an eye test will always include the following:

  • Measuring the optical prescription
  • Examining the health of the front and back of the eye
  • An assessment of the alignment and movements of the eyes (ocular muscle balance)

There are however some other some aspects of examining a child with Down’s syndrome that might differ from a standard eye examination and these are discussed below:

Appropriate Vision Testing

Measuring what someone can see is the basic measurement in any eye test. It allows the Optometrist to decide whether a child has the expected level of vision for their condition, and remains a useful measure to check whether the eyes are developing normally.

The standard way of testing vision is by using a letter chart set 6 metres away from where the patient is sitting. There are different types of test chart but the most common used in the UK are a Snellen or Logmar chart.

If a child is not able to complete one of the standard tests there are other tests available as an alternative way of measuring vision. Some of these charts use pictures and are designed for use with children. They are not reliant on the child’s reading ability. Some of the tests match symbols or use a technique called preferential looking to gather the information needed. Examples of alternative test charts include Kay pictures, Allen pictures or Cardiff Acuity Test.

It is important that the Optometrist measures your child’s vision using a method that is appropriate to their level of understanding. Many of these alternative tests are not standard issue and not all Optometrists will stock all tests. You can discuss testing requirements with your Optometrist before the eye test and ask about the alternative testing methods that they have.

Dynamic Retinoscopy

It is thought that up to 70% of children with Down’s syndrome have a focussing problem called an accommodative lag. This means that they may not be able to bring close objects into focus for any length of time. This can be corrected by prescribing bifocal or varifocal lenses.

The technique that Optometrists use to look for this problem is called dynamic retinoscopy. This is not a standard technique and not all Optometrists will use the technique. It would be useful to ask your Optometrist if they are familiar with this examination before any eye test.

Cycloplegic Refraction

Sometimes it is difficult to complete an eye examination if the patient is not able to fully cooperate with the Optometrist. This is when a cycloplegic examination is very useful. It involves instilling an eye drop into the patient’s eye. This relaxes the focusing muscle and dilates the pupil. This enables the Optometrist to obtain a very accurate optical prescription and makes it easier to examine the back of the eye.

Whilst this may not be necessary for all children, it is a test that should be considered and is included here so that you can discuss with the Optometrist whether it is appropriate for your child.

Reasonable Adjustments

If your child has a learning disability this term may be familiar to you. Healthcare workers should be willing to make reasonable adjustments to the way in which they work to make sure that patients with a learning disability receive the care they deserve. This might be as simple as having a longer appointment, or using alternative testing methods. It will always mean that the Optometrist communicates in a way that the child can understand.

If you are concerned that the Optometrist may need to make reasonable adjustments then you can discuss your child’s requirements before an eye test.

Summary

You can print this page and tear off the section below to remind yourself about any issues you would like to discuss at your child’s eye examination:

Eye Examinations for Children with Down’s syndrome

Children with Down’s Syndrome Vision checklist

It is recommended that my child receive an eye test that:

  1. Considers the use of Cycloplegic refraction
  2. Includes Dynamic retinoscopy
  3. Speaks to your child in a way they can understand (including reasonable adjustments)
  4. Uses a Vision testing method that is appropriate to their level of understanding

For more information about Vision for people with Down’s syndrome, please  visit our specialist web page.

About Simon Berry: I have been a qualified Optometrist for 20 years. I started my pre-registration at Sunderland Eye Infirmary and still work two sessions a week as a Specialist Optometrist. My work at Sunderland includes regular paediatric clinics.  I set up my own Optometric practice in 2002. My background is very clinical and I have tried to expand my Optometric practice in that direction. We are involved in all extended areas of clinical practice and have tended to specialize in children’s eyecare.

I am interested in research and have registered my practice as a level 1 site on the UK CRN initiative. As far as I am aware we are the first Optometric practice in the North East to achieve this. I am an honoury member of the Biological Sciences Institute at Durham University. Published work includes two novel case records, a dataset of retinal blood vessels and a novel OCT scan.

I am helping NHS England with a business case to amend the GOS regulations around special facial characteristics. This will be put before the Department of Health in October 2015.

If you have any further questions, please email me on info@simonberry.co.uk

Posted in Health

Eye Conditions in adults with Down’s syndrome

Vinay in office close

Photograph by Lauren Shear

There are certain eye conditions that are more common in adults, but it must be stressed these conditions also occur in the general population, they are not unique to adults with Down’s syndrome.

Some people may develop problems with their sight, more typically seen in older people in the general population, at an earlier stage in their lives.

It is really important for adults to have their sight checked at least every two years.

Many adults will be able to go along to their high street opticians, but they may need a longer examination time.  If you feel an adult who you support needs more time and understanding to enable them to have their eyes tested you may like to try and find an optometrist with an interest in patients with a learning disability (take a look at the SeeAbility website which has a register of optometrists ).

Anyone with an unexplained change in behaviour and/or a loss of skills should have an eye examination to rule out a loss of/changes to their vision as a cause for their behaviour or skill loss.

Here are some of the eye conditions that adults can have:

Refractive errors

Refractive errors are vision problems that happen when the shape of the eye stops you from focusing well and leads to blurred vision. The cause could be the length of the eyeball (longer or shorter), changes in the shape of the cornea, or ageing of the lens. The main refractive errors are Myopia (near-sightedness), Presbyopia (long-sightedness) and astigmatism. Refractive errors are more likely in adults with Down’s syndrome and tend to be more severe.  Near-sightedness may   get worse in adulthood if a person develops cataracts and/or keratoconus.

Presbyopia

Presbyopia is the loss of accommodation (near focusing) which happens as we get older due to loss of elasticity of the lens of the eye. In the general population this typically happens at around 45 years of age; in adults with Down’s syndrome it may be that presbyopia happens earlier. Presbyopia is often ignored in adults with learning disabilities, perhaps because of the common use of the term ‘reading glasses’; if a person does not read, it may be that family and carers do not consider spectacles for other near tasks. Many adults with Down’s syndrome do read, and others will have jobs or hobbies that require good near vision, so need ‘near’ glasses.

Blepharitis

Blepharitis is a common condition which is caused by bacterial infection or skin conditions. If a person has blockage of the tear duct, dry eyes or a skin disease there is an increased chance of developing Blepharitis. The signs to look out for are red and irritable eyelids; dry flakes on the eyelid and the person may experience a burning feeling in their eye. In most cases keeping the eyelids clean and supporting a person not to rub their eyes is usually all that is needed to deal with this condition. However, some people will need a referral to a hospital eye clinic if the problem persists. Your local optometrist can advise you if a person you support develops Blepharitis. More information about the condition is available here

Conjunctivitis

Conjunctivitis is an inflammation of the membrane covering the eye and it is usually caused by bacterial or viral infection. Sometimes it can happen because of an allergy, something in the eye or excessive use of contact lenses. It causes redness of the eyes and sometimes itchiness, stickiness and watering of the eyes. Mild cases should be referred to an optometrist who can usually determine the type of conjunctivitis and advise accordingly. The condition would only rarely require hospital referral.

Keratoconus

This is a condition in which the cornea (the clear, curved part at the front of the eye) becomes thin and fragile and steepens into an abnormal protruding conical shape. Usually there is no known cause for the condition but it can happen if a person rubs their eyes a lot. The protrusion gets worse over time and causes an increase in short-sight and distortions of vision that cannot be corrected with spectacles.

It can be managed with contact lenses, and people with Down’s syndrome should be offered the same opportunity to try contact lenses as those in the general population. There are many cases of very successful lens wearers with Down’s syndrome. In late-stage progressive keratoconus, corneal transplant is the standard treatment and is as successful in people with Down’s syndrome as it is in the general population. New therapies are becoming available that aim to halt the progression of keratoconus; the most well established one is collagen cross-linkage. This therapy is only viable in the early stages, and therein lies a challenge. The normal cornea in people with Down’s syndrome is thinner and steeper than average, which can lead to misdiagnosis of keratoconus.  Recognition of early true keratoconus in people with Down’s syndrome is reliant on progression over time. Because keratoconus seems to happen from adolescence onwards there is an argument for more frequent eye examinations during teenage years in order to pick up the condition early.

Cataracts

Cataracts appear in much younger adults than would be expected in the general population. A cataract is a clouding over of the lens of the eye which can affect one or both eyes. Signs that an adult is developing cataracts may include obvious clouding of a person’s eye, turning of the head to look at things out of the sides of the eye, emotional or behaviour changes and a loss of daily living skills. A person’s ability to see may appear to fluctuate; they may be able to perform a task in some situations and not in others. The frustration of fluctuating vision can cause behaviour changes.

Adults with cataracts should visit an ophthalmologist regularly so that the growth of the cataract can be monitored. If a cataract is small and not blocking vision, it is usually just monitored. Understanding the condition is the key to managing it in early stages. Preventing glare by rearranging lighting and household furniture, increasing contrast of tasks and the simple provision of a wide-brimmed hat for outdoor use can make a big difference to quality of life.

Cataract removal is a highly successful operation; people with Down’s syndrome may benefit from an earlier referral for an operation so that they can become familiar with the hospital clinic and so that appropriate planning for aftercare can be put in place in plenty of time.

Vision and getting around

Some adults with Down’s syndrome struggle with stairs and steps and mistake changes in floor covering for a step. This leads to loss of confidence when walking and can be quite debilitating. If an adult begins to struggle with these things make sure they have an eye examination. There may be other causes such as anxiety, but it is important to rule out vision problems as a potential cause for these difficulties.  If a loss or change in vision is not the reason then book an appointment with the person’s GP for further investigation.

Age related eye conditions

Adults with Down’s syndrome are probably prone to exactly the same age related eye conditions as the general population.

Conditions such as entropian and ectropian can occur (in-turned and out-turned eye lids) and are usually due to changes in the eyelid that come with age making it lax. If you notice these conditions, take the person to their GP for investigation.

Age related macular degeneration can happen in someone with Down’s syndrome as they get older. This causes loss of central vision usually in both eyes and vision becomes increasingly blurred. Reading may become more difficult, colours appear less vibrant and faces become more difficult to recognise.

Glaucoma, an increase in the pressure within the eye leading to impaired vision, can happen very gradually in adults.

Final note – Be vigilant

  • These conditions may not be immediately obvious to those supporting an adult
  • Look for changes big and small that might indicate that someone has a vision problem
  • Changes to an adult’s vision may occur gradually over time and the person may be unable to tell you what has changed
  • People with Down’s syndrome need regular eye examinations throughout their adult life

For more information and free resources, please visit the DSA Vision pages

Posted in Health

Vision

Down 2 Earth Magazine Editor's Blog

Vision

Going      to      the      Opticians    and    visit   is

very     important    to   you   and   your   eyes.

Have   eyes   tests   looking   at   your   eyes   to

see   if   there    are    problems.

Children   may not     complain    of     problems

with   their  Sight  as   they  will  not  have
anything  to Compare to poor  Vision.

Look after your eyes if your eyes need glasses,

look after your health and   don’t   forget to be

good to your eyes.

You can tell us about the Opticians and how you

find having eye tests. Email the DSA at

info@downs-syndrome.org.uk and tell us.

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Posted in D2E Magazine Editor's Blog

Halloween

by Rachel Johnston, Harvest Project worker, DSA Northern Ireland

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This Halloween, The Harvest Project Social Groups have been enjoying the festivities. Our Belfast group went on a trip to Aunt Sandra’s Candy Factory.  There we went back in time and learnt all about Aunt Sandra and how the Candy Factory came to be.  We got to see how our favourite sweets were made and even won some yummy prizes in the quiz! Everyone had a great time and a few local members even knew a few old faces themselves.

On Tuesday our Enniskillen group had a Halloween party. There were plenty of treats and even more singing and dancing!

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We all loved Nathan Carter playing on the Karaoke machine.  The guys were great showing us some dance moves and singing every line to “Wagon Wheel” while the girls were busy chatting and dancing.

Happy Halloween from everyone in Northern Ireland!

For more information on our Harvest Project, visit our website

Posted in Northern Ireland

Down 2 Earth October – Visiting the Pharmacist

Down2Earth is a group of adults with Down’s syndrome. We meet once a month to help the DSA and have our say.

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We had a very busy meeting in October. In the morning we got ready for the DSA Trustee Meeting.

The DSA Trustees help run the DSA. We wanted to tell them what we have been doing and how the DSA can help us.

We came up with some ideas for how the DSA can help people with Down’s syndrome. A representative from Down2Earth will go to the next DSA Trustee Meeting and talk to the trustees about our ideas.

In the afternoon Barry Jubraj visited us. Barry is a pharmacist and he wanted to talk to us about visiting the pharmacist.

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We talked about what pharmacists do and how they can help us. Some of the things we talked about were:

  • what the chemist can tell us about our medicines
  • what medicines do to help us
  • how we know how many we should take.

We decided we want pharmacists to talk to us and answer our questions about our medicines. We also think we can help our family and friends by learning more about the medicines we take and why we need them.

Barry will use our ideas to write an article for pharmacists to help them help people with Down’s syndrome.

If you would like to know more about our group visit our website.

Posted in Down 2 Earth, Having A Voice