Down2Earth September Session – Our Ideas!

Down2Earth September Session – Our Ideas! DSC00620 (1)
We had a great session in September. Thank you to Stephanie and Becky for writing notes.
We started by saying hello and talking about what we have been doing. Lots of people had been on holiday this summer!
We talked about our rules and talked about a survey. The survey by the House of Lords Committee on Social Mobility was aimed at young adults who didn’t go to university. It asked for information about their choices and what could be made better for young adults who don’t go to university.
Down2Earth had a look at the survey. Some people thought it looked quite hard and that the writing was difficult to read. We took this feedback back to our policy team. A few people still wanted to try and have a go at the survey and we sent them information about it.
Down2Earth September Session – Our Ideas! DSC00620 (2)
Sharing what we’ve been doing
A big part of Down2Earth is about sharing our stories. James told us about his visit to Swindon Salamander group. He saw people with Down’s syndrome showing their firefighting skills. Read his blog for the full story.
Libby, Becky and Karen told us about some filming they did. They interviewed a woman who supports people with learning disabilities to look after their money. The interview will be part of our video series about money management
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Our ideas for Down2Earth next year
We talked about what we want to talk about at Down2Earth. Everyone wrote ideas on a mind map. We came up with lots of ideas and voted for our favourites.
Some of the things we want to see are:
  • Christmas party!
  • Talk about family and friends and how we can stay in touch
  • Share about our holidays
  • Learn about healthy eating and healthy cooking
Down2Earth September Session – Our Ideas! DSC00620 (4)
Making a film
As you may know, we are making a series of videos about money management. This time we were filming Down2Earth’s tips for saving money. Everyone brought in things they need to save money for. We all agreed saving money is important – but sometimes it can be hard to do it! Luckily Down2Earth had some top tips for saving, including: using cinema ticket points, putting money in a savings account and getting a job to earn more money.
Thank you to everyone who came to the meeting – looking forward to the next one!
Contact us: Here are ways to find out more about Down 2 Earth
Posted in Down 2 Earth

Coeliac Disease

We thought it was time to raise awareness about Coeliac Disease which is a condition that people with Down’s syndrome are more susceptible to. It is a condition that may be overlooked and symptoms too readily explained away as ‘just part of Down’s syndrome’.  So constipation, which may be a symptom of Coeliac Disease, may be put down to low muscle tone rather than the person being given a proper medical examination.

What is Coeliac Disease?

With this condition, a person has a bad reaction to gluten which is a protein found in wheat, barley and rye. The wall of the small bowel (intestines) becomes inflamed and its lining becomes flat and this makes it harder for the body to absorb vitamins, minerals and calories.  Coeliac Disease is usually diagnosed in childhood, but it can develop at any age even if you haven’t previously shown any signs of having the condition.

Is Coeliac Disease more common in people with Down’s syndrome?

Coeliac Disease is an autoimmune condition and we know that, compared with the general population, people with Down’s syndrome have a higher chance of developing certain autoimmune conditions.
Autoimmune conditions are diseases where the immune system, the body’s defence mechanism against infection, attacks parts of the body in the same way that it would attack a germ. With Coeliac Disease the immune system wrongly identifies certain substances found in gluten as a threat to the body and attacks them. This is what causes the damage to the small bowel.
The DSA are collaborating with a research team at the University of Bristol who are investigating Feeding and Autoimmunity in Down’s syndrome. The team is looking for new parents willing to complete a questionnaire about their child’s feeding and health as a young baby and at six and twelve months. They will also ask about the child’s health yearly after this until the age of 5 years old. It is hoped that the study will help us understand why children with Down’s syndrome are more likely to experience problems with their hormones and their gut, help reduce this risk and lead to the development of new treatments to help with feeding. Further information about the study can be found here.

What to look out for

Here are some of the more common symptoms of Coeliac Disease:
  • Diarrhoea (which may be quite smelly)
  • Weight loss
  • Abdominal pain/discomfort
  • Passing wind and bloating
  • Feeling tired, lack of energy or motivation (because the body is having difficulty taking in nutrients from food)
  • In children, not growing at the expected rate
As with any medical condition that occurs, parents/supporters should never allow symptoms to be dismissed because a person has Down’s syndrome. Conditions such as Coeliac Disease can be managed, and its effects reduced, once properly diagnosed.
There can, of course, be other reasons for these symptoms to occur rather than because someone has Coeliac Disease.  If someone with Down’s syndrome is showing some of these symptoms, it’s always a good idea to get them checked out with their GP.

How is the condition diagnosed?

The process of diagnosing Coeliac Disease starts with an assessment by a GP of a person’s symptoms and a physical examination. The GP may then arrange for a blood sample to be taken to test for antibodies that are usually present in people who have Coeliac Disease.
We know that some children and adults with Down’s syndrome will find having a blood test difficult. Take a look at our blog about children with Down’s syndrome giving blood samples here. The blog contains tips and ideas that you can try to make the experience easier for your child. This blog piece has been extended to include adults and turned into an article for the current DSA Journal.  Find out how to receive DSA’s Journal here.
If the antibodies are present, the GP will make a referral for a biopsy of the gut. This will usually be performed by a Gastroenterologist and involves a flexible tube with a small video camera (endoscope) being fed through the mouth and down into the small bowel where a sample of tissue will be taken for analysis. A local anaesthetic or sedative may be given for this procedure to help the patient relax. The biopsy is the only way to be absolutely certain that a person has Coeliac Disease.
It is possible to have Coeliac Disease and not have the antibodies in your blood. If symptoms continue, the GP may still make a referral for a biopsy anyway.

Should people with Down’s syndrome be regularly screened for Coeliac Disease?

At the moment there is no formal Coeliac Disease screening programme in the UK for people with Down’s syndrome.  If there is any evidence (even if relatively minor) to suggest that a person may have the condition, their GP should be asked to carry out screening.
We suggest that Coeliac Disease is discussed as part of an Annual Health Check. Everyone with Down’s syndrome over the age of 14 years is entitled to a free Annual Health Check with their GP.
Information for GPs about Coeliac Disease can be found here under ‘Gastrointestinal Disorders’
Information about Annual Health Checks can be found here

How is Coeliac Disease treated?

Once the diagnosis has been made, the person with Down’s syndrome will need a gluten-free diet because even a small amount of gluten can cause the symptoms already discussed.  This means wheat, barley and rye should be avoided. It is important that a gluten-free diet is balanced and healthy. Your GP can give help and advice about managing with a new gluten free diet. You may be referred to a dietician for support and advice. It may also be a good idea to avoid oats for a while; seek advice about this.
Some people may need to take vitamins and minerals while the body repairs itself.

How will my son/daughter cope with their new diet?

We know a number of adults who, with support, cope very well with sticking to a gluten-free diet. In fact the tendency of people with Down’s syndrome towards sameness and repetition can be usefully employed in some individuals to make sure they stay on track with their new diet. To stick to the diet, the person needs to learn about the foods and other non-food substances (e.g. some medications, lipsticks, stamps), that may contain gluten. Most people will need help and support with this to varying degrees.
Visual supports can be useful to help teach about the new diet; these could include a resource around recognising gluten-free foods and packaging labels. There is an internationally recognised ‘Crossed Grain’ Symbol that is found on packaging for gluten-free foods.  It may be useful to think about how to give your son/daughter the means of explaining that they have Coeliac Disease. This may be through teaching them the words they need to know and/or giving them a way to let strangers know about their Coeliac Disease (e.g. a laminated card with gluten free written on it to present to a waiter or shop assistant).


DSA Resources
‘Gastrointestinal problems in children’ can be downloaded here
Other Resources
Coeliac UK
Easy read information about having an endoscopy – an example can be found here
Posted in Health

Christmas Card Competition. D2E Editor’s Blog

Read the new post on the: Down 2 Earth Magazine Editor’s Blog

Kate and AlexaKate's Blog Christmas cards

Posted in D2E Magazine Editor's Blog

Our Voice Our Choice Group – Family, Friends and Supporters Day

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“I started coming to Our Voice Our Choice South West in May 2015.  It is a good group. It is more strong and powerful to talk about my own life and stuff you want to do. I am looking forward to being able to Skype other groups like DSA in London. […] People should be involved with the DSA because they are trying to help out people with Down’s syndrome.” Alex on why he enjoys being part of the group.

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We were delighted to host a Family, Friends and Supporters Day at Old Forde House in Devon on behalf of the Our Voice Our Choice South West group. It was fantastic to have over 35 people attend and we were very pleased to welcome Mr and Mrs James from the Freemasons’ Grand Charity, which provides funding for the DSA’s Having a Voice project.
The Family, Friends and Supporters day was an opportunity for everyone with an interest in the group to come together to celebrate its success. Group members had worked hard to plan the day’s events, designed the agenda, planned refreshments and prepared individual presentations.
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Proceedings got underway with a short introduction from the DSA before members gave presentations about their lives.
They talked about a wide range of subjects including interesting things that they do in every day life, what the group does:
 “I have been coming to Our Voice Our Choice South West since June 2015.  It is interesting and I like it. I like seeing new people and some of my friends in my past.  I like dealing with money.”  Stella talking about planning the money management videos for people with Down’s syndrome.
And why they like the group:
 “I have been coming to Our Voice Our Choice South West since June 2015.  At the group we plan family day. We talk about things.  Be careful with money. Looking forward to Skype. We talk about lunch time. Talk about other things.  Make friends.” Tim explaining why he enjoys coming to the group.
Alex and Jack even led everyone in a short Tai Chi demonstration!
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The talks were engaging and were an excellent opportunity for everyone to celebrate their achievements so far.
The group is very excited about its future and is looking forward to making links with other groups across the country.  We already have plans for two additional groups and we would be interested to hear from anyone who would like our support to set-up a similar group in their area.
“When I come in I was bit nervous.  Next day I was feeling better.  This time making more friends around. More confidence. Looking forward to making more movies. Come – think about it – don’t be nervous.” Oliver talking about overcoming his fear of joining the group.
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The Our Voice Our Choice South West started meeting in May 2015.  The group has quickly gained committed members who meet monthly to discuss things that matter to them.  The group makes an invaluable contribution to the work of the Down’s Syndrome Association. Together with the Down2Earth group in London, they are currently working on a series of short videos about managing money, which will be made available on the DSA website in the future.
Family, Friends & Supporters Day DSC00225  Family, Friends & Supporters Day DSC00152
Contact us: Here are ways to find out more about Our Voice Our Choice South West

Having A Voice is supported by a donation from the 

Freemasons Grand Charity

Posted in Having A Voice

Peggy Fray Memorial Conference

Peggy Fray image

Conference to acknowledge the contribution of Peggy Fray, former Down’s Syndrome Association Trustee

For many years the Down’s Syndrome Association was fortunate to work with an inspiring family carer, Peggy Fray, who cared for her sister Kathleen.  Kathleen had Down’s syndrome and in later life, developed dementia.

Peggy wrote a moving account of her experiences growing up with her sister called Caring for Kathleen (published in the 1990s). After her sister died, Peggy became a well known campaigner and speaker about the needs of older people with Down’s syndrome.
Peggy was a Trustee of the Down’s Syndrome Association for more than a decade and regularly made the journey from her home in Lancashire to attend meetings. Peggy’s valuable contributions helped to guide the work of the Association and many DSA staff will recall Peggy grilling a former Director General of Social Care at a Learning Disability and Ageing conference we organised in Birmingham in 2004!
Julian Hallett, DSA Wales Manager, leads ageing and dementia training at the DSA and will be speaking about the work of the Association at the first Peggy Fray Memorial Conference in Preston on 26 November. Other speakers include Noelle Blackman from RESPOND and members of the research team working with Professor Tony Holland at Cambridge University. For more information about the event please contact Val on 07711 601913.
The DSA has a range of information and resources on health and wellbeing.  Please visit our dedicated pages or contact us on 0333 1212 300
Posted in General

Baby Eva, her family and friends have a great time raising funds for the DSA!

Baby Eva raises money for the DSA Nanna Caz & Eva a    Baby Eva raises money for the DSA Lions logo

Baby Eva plays the role of Minnie Blake in Hollyoaks and is looked after on set by her ‘Nanna Caz’.
Minnie Blake is heavily involved in storylines on Hollyoaks and has been since she was born. Eva’s family feel that Hollyoaks are approaching the storylines in a very positive way and are dispelling myths as they go along; the first one being that babies with Down’s syndrome are always born to older mothers. The character of Maxine (Minnie’s mother, played by Nikki Sanderson) is only 31 and is the same age as Alana who is Eva’s real mum.
The experience for Eva at Hollyoaks has been a really positive one: it is almost as if the actors and crew at Lime Pictures are her second family, (particularly Nikki and lovely Jeremy Sheffield who plays Minnie’s father – “the evil Patrick Blake”!)
Baby Eva raises money for the DSA Eva & Cast1    Baby Eva raises money for the DSA Eva & Cast2    Baby Eva raises money for the DSA Eva & cast3    Baby Eva raises money for the DSA Eva & cast 4
Eva’s Nanna Caz (and her Nanna Sue) are also members of Accrington Lions, who this year held a family fun day to raise awareness and funds for the Down’s Syndrome Association.
Baby Eva raises money for the DSA lions    Baby Eva raises money for the DSA lAccrington Lions & helpers
The managers of Snuffy’s Bar went all out to decorate the venue and make sure it was a fantastic day. Events on the day included a disco and karaoke, toy stall, sweet stall, craft stall, craft competitions, cake stall, raffle, “Minnie” auction, professional photographer and much more.  Ants Geraghty, Accrington Lions very own hairy biker, even shaved his much loved and cared for beard off to raise funds!
Baby Eva raises money for the DSA DS Ants before    Baby Eva raises money for the DSA DS Ants after
When Eva’s family collected all the pledges and sponsorship money, Accrington Lions generously topped up the amount to £1500!
The day was such a success, the Accrington Lions have been asked by members of the public if they can add the day to their annual calendar of community events!  A massive thank you from everyone at the DSA to everyone involved in a wonderful day.

If you would like to follow Baby Eva’s lead and raise awareness and money for the DSA, contact us for some fantastic fundraising ideas: 0333 1212 300

Posted in Fundraising

Planning for Adult Life

Down 2 Earth Group

Many families may be breathing a sigh of relief now that the summer holidays are over and a new school or college year has begun, however, even in the middle of new beginnings, it is not too early to start planning for the next stage. This particularly applies to young people preparing for adult life, the stage commonly known as ‘transition’.

As a result of the recent reforms to the law on Special Educational Needs and Disability, there is an important new emphasis on planning for adulthood including:
·         moving towards work
·         independent living
·         participating in society
·         being as healthy as possible
Good planning is essential and should be done at least a year before a major change. Ideally the young person, their parents/carers, the school or college and the local authority should all be working together to get things moving, but this doesn’t always happen. It is all too common for a young person with Down’s syndrome to get to the end of their last year in school or college without proper thought having been taken as to the next steps.
If you are the parent/carer of a teenager or young adult, here are a few points to get you started on thinking ahead.

Trigger points

Some of the main trigger points for planning are
·         Year 9 – age 13/14
·         Leaving school at 16 or 19
·         Leaving college
The DSA website has information about what to do at each stage

Some specific areas

Education – From this school year, all year 9s and school leavers with a statement of SEN must be transferred to an Education Health and Care Plan (EHCP). Any young people who are staying in college beyond September 2016 and who still have the old style Learning Difficulty Assessment (LDA) must also move to an EHCP.
There is more information in our factsheets on Education Rights for over 16s and on Transfer Reviews
Social Care – Most young adults with Down’s syndrome will be eligible for social care support and there is now a right to request an assessment from adult social care before the person turns 18.
The young person’s voice – As young people move towards adulthood, they will increasingly be involved. You may want to find out about person centred planning. It is also important to be aware of how the Mental Capacity Act affects decision making.

Find out more

From the DSA
We have lots of resources to help you:
Teenagers and young adults section  – this includes a planning timeline
Education Rights Series
Finding work – DSA WorkFit
Supported Living
Making choices and Mental Capacity
Parent workshop – we are running a workshop for parents in Greater London on preparing for adult life
From other organisations
Preparing for Adulthood
Transition Information Network
Person centred planning info from the Foundation for People with Learning Disabilities
Person centred planning info from Helen Sanderson Associates

The DSA has a wide range of information available for families and carers.  Please visit our dedicated pages or call us on 0333 1212 300.

Posted in Transition