Tips Playtime with Blind and visually impaired children. (And they help with sensory play for children on the autism spectrum!)

This infographic gives several tips and ideas for parents on games that are suitable for blind and visually impaired children, as well as games that are inclusive and can be played by those sighted and non-sighted.

And how you can adapt toys to be more user friendly for a visually impaired child.

There are creative ways to get your kids involved in arts and crafts too and fun activities that will help them learn how to play and develop their sensory skills. Which is why they are great for children on the autism spectrum!

Playtime with Blind and visually impaired children
Playtime with Blind and visually impaired children by Wooden Toy Shop

Vision for Zambia – how you can help children in Africa see again this holiday season.

Orbis, the sight-saving charity that transforms lives by preventing and treating avoidable blindness and visual impairment, is appealing for support. For the next two months, the UK government will be doubling all public donations made to their Vision for Zambia appeal, helping the charity prevent blindness in twice as many children.

Orbis - Vision for Zambia
Orbis – Vision for Zambia
Ophthalmic Nurse, Ann-Marie Ablett (interviewed below) , is the winner of the Royal College of Nursing in Wales 2014 Humanitarian Relief Award, which recognises her amazing contribution and commitment to improving health services in areas of need around the world. She has volunteered with Orbis since 2003, using her annual leave to take part in 29 training programmes, including 7 in Zambia, sharing her skills with nurses and treating over 1000 patients.

Zambian children are four times more likely to suffer from blinding conditions, such as cataract, than those in countries such as the UK. Here the condition is thankfully rare, affecting 3 out of every 10,000. It has one of the highest rates of paediatric blindness globally however there are few ophthalmologists – 15 vs 3,000 here in the UK, and only one paediatric ophthalmologist in the entire country.

With the right access to treatment, half of paediatric vision loss can be avoided or cured. Orbis relies on its amazing medical volunteers, like Ann-Marie, to train eye care specialists, including nurses, surgeons and anaesthetists, who transform lives. Ninety percent of blind children do not attending school and 60% of die within a year of becoming blind; this appeal can make a real difference.

In order to save the sight of over 105,000 children, Vision for Zambia will raise funds to improve outreach work and train over 750 eye care professionals, including nurses. The UK public can help save a child’s sight for free – when they visit and sign up to find out more, a generous supporter will give £1. Until the 3rd February the UK government is matching all donations, so this simple act will generate £2.

Patient Talk – Who is Orbis and what do they do?

Ann-Marie Ablett – Orbis is a an eye charity focusing on blindness in developing countries, we focus on particularly on children, 90% of children in Zambia do not attend schools so that means there is no door open for them for the future and also shockingly 60% of children die within a year of becoming blind, that’s 3 in every 5 children because they haven’t had the opportunity or the means where they can be screened for avoidable or untreatable blindness.

Patient Talk – Ok and what does the training consist of?

Ann-Marie Ablett – Well we have Doctors, Nurses and biomedical engineers so my role as a volunteer nurse is I will work very closely with the local nurses, I will scrub with them and go through the practises and the principles of safe side surgery, reducing the risk of infection and the easiest way to do that is to make sure you wish your hands properly, there is a specific way when you are scrubbing for cases and so we are there to expose the patient to best practise and we teach the nursing staff because once we go in the door that’s all they say is ‘ help me, please help me to learn ‘ so that they can support their patients and help them to lead a productive life.

Patient Talk – Ok and can you tell us a bit more about the Vision for Zambia campaign?

Ann-Marie Ablett – It’s focusing on Vision for Zambia , focusing on screening and treating up to a 100,000 patients and we are going to do that by working in out of reach areas, we have already been working in Zambia since 2011 and now what we need to do to reach out to reach the patients in outreach areas is to train primary nurses so that they are in a position where they can focus and have a look at the patients eye and determine how early the treatment is required because the earlier you treat the condition, such as cataracts, the sooner the patients vision will be restored. The great thing about this appeal is the UK government is matching the donations which we will have from the public.

Patient Talk – What does being a volunteer involve?

Ann-Marie Ablett – Well it’s one of the easiest things that I have ever done, so what we do is work closely with the nurse, we will present the speciality they have us for ahead of time so that they can learn how to treat the patient so that they can teach their colleagues who are looking after the patients on the wards, so to do that they have got to have an understanding of the problem and the possible complications, nothing is 100% guaranteed and there is always a possibility of a complication so if they know what to look for they can then tell the patient like in cataracts surgery a pain that is not controlled by pain killers than that’s an indication that you need to contact the surgeon.

Patient Talk – Ok who should become a volunteer and how would someone apply to do the types of things that you do?

Ann-Marie Ablett – Well the easiest thing to do is ring up Orbis it’s the most amazing charity, it’s very supportive and I am lucky enough to go to all those countries where the need is greatest, 60% of children die within 1 year of becoming blind and that’s 3 out of 5 children so if you have the opportunity to go there and work with the local nurses to prevent that you would certainly take it up and once you go once you are going to be addicted as I have been addicted for 13 years now and I carry on going so if you were to contact they will take it further and before you know where you are you will be on the plane to an interesting developing country and meeting new colleagues.

Patient Talk – Ok and I just wanted to ask, why did you volunteer?

Ann-Marie Ablett – There are 2 doctors at the hospital who volunteered at Orbis and I asked if I can go and they said ‘no orbis has got their own personal staff ‘ so I wasn’t going to take no for an answer so with further investigation and a bit of determination I found myself going to Zambia And once I got there I realised my practises were no different, we go there to exchange our skills and knowledge and the reception we had from the nurses, really nurses are nurses the world over and all we want to do is care for our patients but I would like to say that once you do it once you won’t ever want to stop just if you don’t do it it’s as though there is a piece if the jigsaw missing and to complete that part of your life you have to go and do something, it’s very addictive.

Patient Talk – Well I was going to say, what is the best thing you have got out of the experience?

Ann-Marie Ablett – Well the opportunity to change the lives of children and their family as well as to do the job I do and exchange the information I have got to make sure my skills are up to date and evidence based but when you think that just by going there for a week or maybe two week you can change the life of the patient and their family and the community, it’s such a warm feeling that you can’t get anywhere else, you can’t buy it and its really quite a selfish feeling because when you go home you think I did something that not many are doing, how lucky am I but then that’s because I work with Orbis and that focuses on education so it boils down to education.

Patient Talk – Ok and what other resources are out there for patients and for people who wish to donate?

Ann-Marie Ablett– Well if they sign up to then we will receive a £1 from generous donors and that will be matched by the UK government so please just sign up to that.

Patient Talk – Ok thank you very much Ann-Marie.

Ann-Marie Ablett – Thank you.

National Eye Health Week – Is one eye covering up the problem? – Find out more about the symptoms of Wet AMD

Wet age-related macular degeneration (wet AMD) is the leading cause of blindness in the UK and mainly affects the over 65s.  The number of people at risk of developing wet AMD is expected to grow significantly as the population ages.

A new campaign, supported by Leicester’s Hospitals and Leicestershire sight loss charity , Vista aims to raise awareness of wet AMD and its signs and symptoms among older people in the Leicester area, encouraging those over 65 to see their optician if they have any concerns.

The campaign, running during National Eye Health Week (NEHW), will ask ‘Is one eye covering up the problem?’ to highligh how wet AMD can affect one or both eyes and sometimes the healthier eye can compensate for any loss of sight.People at risk are encouraged to check their vision in both eyes by covering up one eye and looking straight ahead.

Symptoms of wet AMD include; difficulty in reading small print even with reading glasses; straight lines appearing wavy or distorted; or blurred vision.  It affects the part of the eye which sees fine detail (central vision), so can make everyday tasks such as driving, cooking, reading and seeing faces very difficult.  The risk of developing the disease increases with age, having a family history of wet AMD and smoking.

Theo Empeslidis, a consultant ophthalmologist based at Leicester Royal Infirmary, explains the importance of this campaign:  “Wet AMD is an aggressive form of macular degeneration and, if left untreated, can cause severe vision loss within weeks.  This campaign is all about asking people over the age of 65 to cover up one eye at a time and look straight ahead and check their sight.

“Difficulties reading or blurred vision are not necessarily signs of old age. If you have any concerns, make an appointment with an optician and ask about macular degeneration. The earlier we’re able to diagnose and treat wet AMD, the more sight we’re likely to save.” The new research also shows only 14 per cent of people who were aware of wet AMD were able to correctly identify at least one sign or symptom of the condition.

Paul Bott, Chief Executive of Vista adds: “These results highlight the worrying fact that the majority of people in Leicestershire who are at high risk of developing wet AMD have never heard of the disease and can’t identify the main signs and symptoms.

“Wet AMD is the biggest cause of preventable sight loss in this country and, as we get older, our risk of developing the condition increases greatly.  These days we’re all living longer so it’s in everybody’s interests to take five minutes to find out a bit more about this campaign because it could make all the difference to saving your sight.  Pick up a leaflet, call our helpline or speak to your optician if you have any concerns.”

Further information about wet AMD is available at

Group B Strep Awareness Month – #gbsaware The most common cause of infection in newborn babies-find out more.

Group B Strep Support
Group B Strep Support
Okay I know you seem to be bombarded with information about different medical and healthcare topics which I feel you should be aware of. Apart from health awareness being one of the key objectives of this blog the following blog post is I think of great value to any family expecting or planning a baby.

So what actually is Group B Strep and why do we need to know more about it. Well very luckily here the UK’s Group B Strep Support have produced a huge amount of useful information on their site which they allow bloggers to use to promote awareness of Group B Strep.

We have covered various infections in the past so you can check out previous blog posts here.

Before I share the information created by Group B Strep Support to raise awareness of Group B Strep can I direct you to their web site here. Many I also mention that unlike many advocacy groups I can think of ( you know who you are) Group B Strep Support have actually build a site which really works from a users point of view. Go Group B Strep Support we need more sites like yours!

They explain in a great document entitled Group B Streptococcal (GBS) infection in babies “Overview: Group B Strep is a deadly but preventable infection and is the most common cause of life-threatening infection in newborn babies in the UK. Each month, 48 babies develop GBS infection, of whom 5 babies a month die. 90% of these could be prevented – a saving of heartbreak for 43 families and an estimated annual net benefit of £37 million for the NHS. Countries with screening programmes have seen the incidence of GBS infection in babies fall by around 70%. This must happen here – guidelines issued in 2003 are ineffective: the incidence of GBS infection in babies rose in England, Wales & Northern Ireland by over 51% between 2003-08.

Clinical Features: In babies: meningitis, pneumonia and septicaemia (blood poisoning). Pregnancy-related: stillbirth, septicaemia, infection of the ‘waters’ and urinary tract infection.

Cause: A bacterium – Streptococcus agalactiae (group B Streptococcus, group B Strep, GBS, Strep B).

Incidence: The 2008 figures for England, Wales & Northern Ireland of voluntarily reported, culture-proven cases of GBS infection report 470 GBS infections in babies aged 0-90 days – 66 per 100,000 live births. Adding estimated unreported cases increases this to at least 585 babies, but this isn’t the whole story. Including probable cases of GBS infection would increase the incidence significantly, potentially three fold.

Long-term problems: Cerebral palsy, blindness, deafness, speech problems, learning disabilities etc. 6 babies a month die from GBS infection. Half of the babies who develop GBS meningitis may suffer long-term mental or physical problems, and for 1 in 8 of these babies the handicaps can be severe. Each year, approximately 75 UK babies die from GBS infection and 40 suffer long-term problems.

Transmission: Up to 30% of adults unknowingly carry the GBS bacterium, commonly in the rectum and/or vagina – there are no symptoms. Bacteria from the vagina may spread to the baby around labour. Transmission after a baby is born is believed to be through skin-to-skin contact with a carrier.

Risk Groups: Pregnant women, the unborn baby and the newborn are at risk. For babies, the risk is higher where the mother carries GBS during the current pregnancy, her waters have broken for >18 hours, she goes into labour or her waters break prematurely, she has a fever in labour or has previously had a baby with GBS infection.

Current UK Practice:
Information: most pregnant women are not informed about GBS or about good preventative measures. Limited information appears in the Department of Health book given to first-time mums and nothing is routinely given to mums in their subsequent pregnancies. Every woman should be informed about GBS as a routine part of her antenatal care. The National Service Framework for Children, Young People & Maternity Services recommends pregnant women see their midwife at 25 weeks, ideal for information provision.

Current UK Guidelines:
The Royal College of Obstetricians & Gynaecologists (RCOG) published guidelines for a risk-factor approach for preventing GBS infection in newborn babies in 2003 (under review, due 2010/1). Their 2007 audit showed widespread failure to practice consistently with this guideline – none of the following is recommended by RCOG:
• 75% of units offer intravenous antibiotics in labour (IAL) for a previous maternal GBS test result without testing in the current pregnancy
• 57% don’t offer IAL for premature labour
• 49% don’t offer IAL for waters breaking >18 hours before delivery
• 49% offer a non-recommended antibiotic regimen
• 38% swab women who have previously had a baby with GBS infection
• 26% selectively or universally screen
Although hospitals increasingly have policies on preventing GBS infection in babies, the widespread failure to practice consistently with the RCOG GBS guideline clearly demonstrates a robust educational program is vital for both health professionals and pregnant women. Most pregnant women will not be told about GBS unless they specifically ask –most don’t know to ask but, even when they do, many health professionals aren’t informed themselves. Every institution in which babies are born should have a protocol for preventing GBS infection in newborn babies – at a minimum, these should comply with the RCOG Green Top Guideline 36.

Best Prevention Strategy:
Prevention programmes, using sensitive tests, have been adopted and found to work in many other European countries, as well as in the US, Canada and Australia and report reductions in GBS infection of up to 70%. Research shows the best prevention currently available uses both risk factors and sensitive testing of low-risk women late in pregnancy to identify which babies are at higher risk of GBS infection, then offering intravenous antibiotics in labour to their mothers. This could prevent 80-90% of GBS infection in newborn babies, compared with fewer than 60% using risk factors alone. Research published in 2007 reported this would save both lives and money – a net benefit of up to £37m a year in the short term and more longer term.

Testing for GBS:
Method: There is no routine testing for GBS in the UK. The NHS test available to detect GBS carriage, a standard HVS (high vaginal swab), is very insensitive, failing to find GBS in up to 50% of those carrying GBS when the swab is taken. Many health professionals don’t realise the HVS gives such a high false-negative rate. The Health Protection Agency’s Bacteriology Standard Operating Procedure 58 – Processing Swabs for Group B Streptococcal Carriage describes the recommended method for testing for GBS (low vaginal and rectal swabs, cultured using enriched media – ECM tests). Yet ECM tests are only available from 4 NHS trusts. All NHS testing for GBS carriage in pregnant women should use the ECM test: relevant health professionals should be informed of the difference between the tests and when each is appropriate.

Timing: The best time to test for GBS carriage in pregnancy is 35-37 weeks and the National Service Framework for Children, Young People & Maternity Services recommends pregnant women see their midwife at 36 weeks, which would be an ideal opportunity for taking swabs.

Availability: ECM tests are not available in most of the NHS, even to health professionals – this is archaic. At least, the ECM test should be available on request to health professionals. Until pregnant women are offered this test routinely in the NHS, they should be told the test is available privately and given information on how to get it.
The standard NHS test can be misleading, the recommend test is done by 4 NHS Trusts currently.

GBSS wants:
1. All relevant health professionals to be fully informed about GBS and every pregnant woman to be given clear and accurate information on GBS as a routine part of her antenatal care.
2. Sensitive Enriched Culture Medium (ECM) testing for GBS carriage (recognised as optimal by the Health Protection Agency and the Royal College of Obstetricians & Gynaecologists) to be freely available in the NHS.
3. Every low-risk pregnant woman to be offered a sensitive test for GBS carriage at 35-37 weeks of pregnancy, free of charge (and, until these tests are freely available, all pregnant women should be told these tests are available privately or directed to the GBSS website where they can find out about them).
4. Every high-risk pregnant woman (those who have had a baby with GBS infection, those with GBS bacteria during the current pregnancy and/or 2 or more of: GBS carriage, mum having a fever in labour, premature labour, premature waters breaking, prolonged waters breaking) to be recommended to have intravenous antibiotics from the start of labour until delivery.
5. Every higher-risk pregnant woman (those with only one of: GBS carriage or mum having a fever in labour or premature labour or premature waters breaking or prolonged waters breaking) to be offered intravenous antibiotics from the start of labour until delivery.
Research estimates this could prevent 80-90% of GBS infection in newborn babies in the UK.
Until sensitive testing is routinely available for all pregnant women, GBSS wants:
1. The Royal College of Obstetricians & Gynaecologists’ guidelines to be fully implemented in all maternity units, and for policy and practice to be regularly audited against these guidelines.
2. All pregnant women to be given information on the availability of the sensitive ECM test in their area, whether that’s in the NHS or privately.
3. No further use of the ‘standard’ test within the NHS for detecting GBS carriage in pregnancy.

Reporting: Culture-proven cases of GBS infection are voluntarily reported to the Health Protection Agency. Probable cases of GBS infection should be included in any statistics, potentially increasing the incidence three fold.

Trends: GBS emerged in the 1970s as the most common cause of infection in newborn babiest. GBS infections are increasing – the Health Protection Agency reported a 51% increase in the incidence of GBS infections in babies aged 0-90 days to 470 in 2008 from 311 in 2003. That’s 9 babies a week, up from 6 babies a week, at a time when national prevention guidelines were being implemented.

Macular Degeneration – A users guide! Find out more about the most common cause of blindness in the developed world in an exclusive Q&A with Victoria O’Connor and Cathy Yelf.

Macular Degeneration
Macular Degeneration
A few weeks ago PatientTalk.Org ran a short blog post looking at the impact of UV radiation on the eyes. In particular we looked at the risks and some of the issues surrounding macular degeneration the most common cause of blindness in the developed world.

So we are happy to share with you a recent interview we conducted which provides a Frequently Asked Questions (FAQ) guide to macular degeneration. While , perhaps, not quite all you need to know it gives a great overview of the condition. If you have any follow up questions feel free to add them to the comments box below and we will ask one of the experts we interviewed to respond.

PatientTalk.Org were pleased to interview Victoria O’Connor and Cathy Yelf to bring you this macular degeneration users guide. Ms Yelf is head of external relations at the Macular Society and looks after their patient information and medical research programmes. Ms O’Connor is the Eye Health Condition Manager at Boots Opticians.

PATIENTTALK.ORG Cathy the first question is, what is macular degeneration?

YELF Macular Degeneration is  an eye condition which leads to the most common cause of blindness in the developed world/countries and it’s a condition of the retina of the back of the eye, the macular is a very small section of the retina, it’s about the size of a grain of rice and its actually responsible for most of our vision, for all the fine detail of what we see, most of our colour vision and all of our central vision. So if you lose your macular you cannot see faces, you can’t drive, you can’t read and at the end stage of the condition people have just a blank in the middle of their vision. So it’s a very serious, very deliberating and devastating condition for people if they are not getting the right kind of support and help.

PATIENTTALK.ORG And what the difference between wet and dry macular degeneration?

YELF Well yes your right there are two forms of age related macular degeneration. The first one is dry; most people have dry macular disease. And it’s called dry just because it’s not wet it doesn’t mean that your eyes are dry or anything and it’s really a very slow degeneration of the cells of the retina and the macular in particular so it becomes a little bit like a worn out carpet, its becomes a bit thread bare and the seeing parts of the cells of the eye the phot receptors of the eye gradually die off and people lose their vision .It’s quite a slow process over months and sometimes many years,  And unfortunately there’s no way of stopping this progression at the moment, its untreatable. Wet macular disease effects fewer people but it’s a more aggressive faster acting disease and it’s called wet because its characterised by the growth of tiny abnormal blood vessels which grow into the macular and these leak and bleed and this leaking, bleeding and swelling of the macular eventually scars the macular and that robs people of their central vision, now that can happen quite quickly in the matter of days or week, fortunately there is a now treatment for wet macular degeneration which is injections of a drug into the eye which stops the developments of these abnormal blood vessels, but both of them often in the end lead to poor vision.

PATIENTTALK.ORG Victoria could you just talk a bit about what UV rays do to increase macular degeneration?

O’CONNOR  So there’s been an increase in evidence over the number of years to suggest the true link between life time UV exposure and the development of macular degeneration as any one of us begins to age and actually, In fact the oral ib published a report called our future …….. reports and it estimates that over half a million people in the UK at the moment are suffering with partial sight lose or complete blindness as a results of cataracts  or macular degeneration , and they too support the fact that there is growing evidence with the link with UV  exposure and the risk of developing. I think UV exposure is a matter that is largely sort of clouded in many myths and many different misconceptions of how much and when were exposed, we know that up to 30-40% of UV exposure can happen on a day when the sky is very cloudy and many of us wander out and about certainly without sunglasses on and many of us even in spectacle lenses that don’t provide any great protection. So the real message were trying to drill home to people at the moment is about ensuring that people, number 1 are aware of how do I protect myself  but also to ensure that people are aware that this about a life time worth of exposure rather than popping outside on the one sunny day we have.

PATIENTTALK.ORG Could you just go through how macular degeneration can be treated?

YELF Well there’s the wet form that can be treated but the other forms can’t. Would you like me to talk more about the injections?

O’CONNOR  Well I think what we probably could say to Cathy’s point; the dry form is the most common form so we know that a significant of patients suffering will have the dry form. Clearly the risks of that is two folds, leaving an immediate risk of disturbance to vision it creates but obviously the other risk is that it then converts to the wet form which is even more  severe. As Cathy said we can’t treat the dry form and that’s why the message about prevention and protection is so important, we also know with macular degeneration is that there are several risk factors that we just can’t control, so things like age, gender and sex but actually the elements we can control are absolutely the UV exposure and of course a little bit about dieting and nutrition as well.

YELF And smoking of course is the biggest factor.

PATIENTTALK.ORG And who gets MD, is it just age related or if you help pro long exposure to UV can you get it when you’re young?

O’CONNOR  so as Cathy said there are several different risk factors so the principle risk factors would be smoking increases your risk, family history increases your risk, ageing is clearly the biggest risk factor, a diet that is lacking in anti-oxidants or generally lacking in good combination regularly of fruit and veg and clearly those who are exposed to UV over their lifetime are at an increased risk. It does tend to affect the majority of patients at the later stage of life, so certainly the over 60s but there has been cases reported younger then that as well.

PATIENTTALK.ORG And why has boots decided today to announce that they are going to include UV protection in their lenses?

O’CONNOR  So I think UV is a topic that were all very well educated on as a general population in the UK, in relation to certain aspects so skin care for example, mums and dads daren’t let their kids out, even on a cloudy overcast day without popping some sun cream on . We know as women were very conditioned to buy moisturises, skin care even make up with an SPF built in. What we are less aware of though is that actually the eyes are up to ten times more sensitive to UV damage then the skin itself is and age related macular degeneration is clearly a huge concern at the moment but there are other conditions linked to exposure as well.  So what we wanted to do first of all was top make UV protection really assessable to everybody , so  actually if you don’t want to walk around in your sunny’s all year around, simply wearing a pair of spec with adequate protection can be a fantastic second option. What we also believed is that there is nobody in the UK who isn’t appropriate for having some UV protection whether you’re a child, adult, working age or in older life and so it was really important to us that whatever level of protection we introduced we could introduce it at a point that would be assessable to all and that’s why we are not charging extra for it, so it’s coming as standard on any pair of Boots lenses that our customers choose.

PATIENTTALK.ORG If they want some more information where can they go?

O’CONNOR  We’ve got loads of information on, on out opticians website or if you pop into any Boots store they should be able some further detail.