My name is Ben. I am 12. I am a photographer…


It’s good fun taking photos.


I really like to take photos.


I try to take photos 3 or 4 times each week.


I like to take photos anywhere.


I like taking photos of things other people haven’t seen.


My favourite place to take photos was the wild life park.


My favourite photos are of the giraffes.  Giraffes are my favourite animal as they are big and beautiful.

Down's syndromeBen6

Mummy helps me a little to changes the lens and put the camera on the tripod.


Mummy also drives me to new places to see if there is anything good to photograph.


I don’t know what I want to do when I grow up, but taking photos would be a good job!

Ben20        Ben4

Thank you for looking at my photos.  I hope you like them!

You can see more of my photos on my facebook page.


Posted in D2E Magazine Editor's Blog, General

WorkFit North West: Holiday Inn Express

Alison Thwaite, Employment Development Officer (North West and North East)

Holiday Inn Express logo

WorkFit North West has recently been working with Holiday Inn Express (part of the IHG Group) at Manchester East and Salford Quays. IHG Academy are offering work-based learning opportunities to candidates in the area which will combine paid employment for one morning a week with a City & Guilds NVQ Level 1 in Hospitality.

Following a successful informal interview process, Emma and Sean began their work-based training on 6 July.
1 WorkFit NW  2 WorkFit NW
Emma’s first assignment is as Breakfast Assistant, which involves assisting guests, re-stocking breakfast items, clearing tables etc. Jennifer Todd, Guest Service Manager says:
“Emma joined the team as a Breakfast Guest Service Assistant at Holiday Inn Express Salford Quays on the 6th July and has already made quite an impression!
Even in just the short time she has been with us we have seen her grow in confidence, chatting with the guests and her colleagues. Emma is willing to learn new things and is enthusiastic about the job role and is picking up her tasks quickly.  Emma’s work ethic has been noted both by guests and staff and she brings a smile to the faces of her team members on shift.
We have been given a great deal of support from both the Downs Syndrome Association and Emma’s family to help Emma integrate into the team.
We hope to see Emma become more independent and confident in the future as she settles into her new role as part of our team”                                                     
Emma says: “The people are friendly.  I like Jen, she is helpful.  I like my job.”
Like Emma, Sean is also delighted to be taking up this fantastic opportunity for work-based learning.  Sean is working with his mentors, Dennis and Lydia to develop a range of skills in the hospitality industry. Sean is currently working as a Breakfast Assistant too. Sean says: I like the job and the staff at the Holiday Inn and look forward to going there regularly”.
3 WorkFit NW  4 WorkFit NW
Sean’s colleagues were keen to express their views about the programme: “Our experience to date has been amazing! To be able to offer Sean the chance to gain valuable work experience whilst working towards an NVQ fills us all with pride. He has fitted into the team really well and is pleasure to work with. He brings a smile to our faces and makes mornings fun! We are all looking forward to guiding Sean through this year.” Beverley Smith, Hotel Manager
“WorkFit has had a hugely positive impact on Sean, myself and the entire hotel. It’s a fantastic programme that supports people to gain employment and training and offers employers access to a diverse and capable talent pool. I know Sean is really enjoying his job and has already learned some valuable skills. I am very grateful for the scheme as it has allowed me to gain additional, invaluable skills and actually furthered my professional career and, last but not least, it has enabled me to work with a fantastic new employee. Sean is one of the most popular members of the team and has had a really positive impact on everyone here.” Dennis Routledge-Tizzard, Guest Service Assistant
Both Emma and Sean are receiving fantastic support and training from colleagues at Holiday Inn Express who are enthusiastic and committed to the programme.
The NVQ course has been specifically tailored to the needs of people with learning disabilities and incorporates a range of assessment techniques including observation, questioning, photo, and video –evidence-gathering to ensure that the learners are given as much flexibility as possible to complete the course and demonstrate their skills and abilities.
The IHG Academy provides local people with skills development and employment opportunities within one of the world’s largest hotel companies. Each IHG Academy is tailored to meet the needs of local communities and hotels (within a common framework).
All IHG Academy programmes have three things in common:
  • they operate in partnership with local community organisations and education providers.
  • they include a work experience placement, giving participants skills and real experience of working in a hotel.
  • they include performance feedback and a recruitment discussion, giving participants an opportunity to gain real experience of the job interview process, improving their chances of finding a job in the hotel sector and in many cases to secure a job in an IHG hotel.
WorkFit supports people with Down’s syndrome to access meaningful work opportunities that can benefit the rest of their lives. For more information about WorkFit please contact the team on 0333 12 12 300 or email us on
For more information visit the WorkFit website
 workfit logo
Posted in WorkFit

Defeat Dementia in Down’s Syndrome Event

Defeat Dementia Aug 15 1
On Sunday 26 July, a team of researchers from Cambridge University came to the Langdon Down Centre to talk about their research – Defeat Dementia in Down’s Syndrome.
They have a number of really exciting studies taking place that they wanted to share. Sally, Maddie, Liam, Francesco, Alexandra and Tony were available to talk to our visitors about the different studies, and they had posters and demonstrations of their work.

The brain activity study

Sally uses electroencephalography (EEG) to investigate how the brain activity of adults with Down’s syndrome changes with age; she is interested in how brain activity changes when people with Down’s syndrome hear sounds, are watching a silent movie, and are relaxing.

A study about changes in the eyes

Maddie uses a special eye scanner called an optical coherence tomography scanner (OCT). It takes very detailed pictures of the eyes to find out whether signs of Alzheimer’s disease can be seen in the eyes and whether they can be seen before the changes that happen in the brain.

Defeat Dementia Aug 15 2

On Sunday, some people with Down’s syndrome went into a quiet room at the back of the stage to have their eyes scanned – one young man commented ‘It was easy, and the man was very nice; it’s good to help the research.’
Parents and carers offered to have their eyes scanned too as part of the control group.

The brain amyloid study

Liam wants to understand what effect amyloid has on the brain. He thinks it might be part of what makes people forget things when they get older. Liam takes detailed pictures of the brain using two scanners.

The energy in Down’s syndrome study

Alexandra is interested in mitochondria, “little factories” in the body that are responsible for producing energy. Alexandra wants to see if there is a connection between problems with mitochondria and certain characteristics of aging in Down’s syndrome, such as changes in memory or personality.

Stem cell research

Defeat Dementia Aug 15 3

Francesco works with special cells called ‘stem cells’ – he takes skin cells that have been donated by people with Down’s syndrome and turns them into stem cells, which are then used to make neurons. This photo shows what neurons look like under a microscope. They have been labelled with jellyfish proteins that glow in the dark to help us see them better.
There was a competition to guess which brain belonged to which one of the researchers – and two people won! Well done Samantha and Karen who guessed correctly who the brain belonged to.
Thanks to Tony and Team and all the families who made the afternoon a success. We hope to organise similar events in the future.
Thank you also to the London Down 2 Earth Group who helped with refreshments, greeted visitors and took part in Maddie’s study. In between helping out, the Group did some fun craft activities including making paper hats depicting different parts of the brain. You can find out more about the studies here
If you are interested in learning more about the studies or think you might like to take part, please contact:
Tina: or Liam:

U of Cambridge logo

Posted in Health, Research

Langdon Down Centre & Normansfield Theatre Autumn Programme

After a quiet summer, the Langdon Down Centre has a full programme of events taking place from September to December.  This includes performances, tours and talks and classes.  Visit our website for further details and to book tickets or call us on 0333 1212 300.

 LDC Blog Aug 2015 another night at the opera  DSC00071  DSC00069

Normansfield Theatre


A Recital of Brazilian Art Song

Sunday, 6 September at 7.30pm | Tickets: £17 and £15 concessions
Discover the richness of Brazilian classical music with Brazilian tenor Renato Cordeiro and Riccardo Serenelli from Villa InCanto through Art Song, with its vibrant rhythm and melodies. Brazil’s rich cultural variations from the north to the south create a fascinating selection of music in the classical tradition, but with a regional and distinctive twist. Music by Villa-Lobos, Claudio Santoro, Jayne Ovalle and others.

LDC Blog Aug 2015  Bohème Verona aLa Boheme

Saturday, 26 September at 7.30pm | Tickets: £20 and £16 concessions
Puccini’s masterpiece La Boheme is justifiably one of the world’s most enduringly popular operas with memorable tunes telling stories of love and romance in the Parisian art world. This is a sweet, but tragic tale of the pretty flower girl Mimi with her beloved poet Rodolfo and of the whimsical and charming Musetta with the painter Marcello.
LDC Blog Aug 2015 another night at the opera

 Another Night at the Opera

Saturday, 4 October at 7.30pm | Tickets: £17 and £15 concessions
Another Night at the Opera  is an evening for all lovers of music to savour. This popular concert takes you on a musical journey through many of the most glorious moments that opera and musical theatre can provide. Under the direction of Music Director Stephen Hose, the singers will perform many of the most famous opera solos and duets. There will also be a narrator to guide you through the evening.
LDC Blog Aug 2015 feel the spirit picture

Feel the Spirit!

Friday, 9 October at 7.30pm | Tickets: £12
The Music Makers of London presents a choral programme with an American flavor: from Eric Whitacre’s wonderfully evocative Water Night to Richard Allain and John Rutter’s toe-tapping, exciting spiritual arrangements to Copland’s dramatic folk song settings. The programme will include: Rutter’s Feel the Spirit, Barber’s Sure on this Shining Night, Erb’s Shenandoah and Whitacre’s Sleep.
LDC Blog Aug 2015

From the Thames to the Trenches

Sunday, 11 October at 7.30pm | Tickets £10 and £8 concessions
A commemoration in music of the Great War, including songs that were sung at home and away.  With special guest artist Paul Alexander reading from poets of the Great War.

Talks and Tours

Open House London  DSC00071

Open House London

Sunday 20 September from 11.30am to 4pm – tours at 12.30, 1.30 and 2.30pm | Admission: No charge
This annual event opens the doors to hundreds of buildings in and around London. Guests are welcome to walk around the LDC or join one of the tours (no pre-booking necessary). A coffee shop selling homemade cakes and books will be open all day.
There have been some significant changes/updating of information at the museum which will be on display.
  • we have updated most of our Normansfield storyboards – 8 new boards are on display detailing the history of the Langdon Down family and Normansfield.
  • We now have 4 life storyboards about residents dating back to the late 1800’s.  These storyboards display letters and diary entries.
Please come and support us on this day and see our updated information.  We will also have a photographic display of some of the work which has so far taken place of our Heritage Lottery funded project Normansfield – Protecting a Theatrical Past.
Down 2 Earth Group

Down’s Syndrome in History and Today

Saturday, 10 October 10am to 11am | Tickets: £5 (includes light refreshments)
Learn about the work of the Down’s Syndrome Association and the condition first described by Dr John Langdon Down in the 19th Century. This talk looks at the condition through history and the lives of those who have Down’s syndrome today


All class start back again in  September. Please visit our website for further details.
Posted in Langdon Down Centre, Langdon Down Museum, Normansfield Theatre, Uncategorized

Our Voice Our Choice South West: August 2015 Meeting

Our Voice Our Choice South West - August Meeting 1a

This is the Our Voice Our Choice South West group.  The group met again on Sunday, 16 August – there were five new people this time. 

Tai Chi

Our Voice Our Choice South West - August Meeting 2

Our Voice Our Choice South West - August Meeting 3      Our Voice Our Choice South West - August Meeting 4

Our Voice Our Choice South West practicingTai Chi
Soozie Fernley came along and gave a free taster session of Tai Chi (Qi Gong), which helps with relaxation and balance.

Exeter Blue Light Day

Our Voice Our Choice South West - August Meeting 5a
At the Exeter Blue Light Day
One of the members gave a presentation about the Exeter Blue Light Day.  He has written a blog about this event, which you can read soon.  He talked about all the people that he had interviewed on the day.

Hopes for Future Interviews

At lunch there was a big discussion about who else could be interviewed.  Some of the ideas were:
  • Lawyers
  • People from Strictly Come Dancing
  • A fish and chip shop owner
  • The oldest fish and chip shop worker in the country
  • Each other
  • Wayne Rooney
  • A cousin who plays rugby
  • Lewis Moody
  • Steven Gerrard
  • Doctors
  • Nurses
  • A support worker
  • A DSA member of staff
  • Simon Cowell
  • Kylie Minogue
That is quite a long list – but we will let you know how we get on.

Money Management Video

Our Voice Our Choice South West - August Meeting 8

Our Voice Our Choice South West - August Meeting 7     Our Voice Our Choice South West - August Meeting 6
Presenters and crew in action
It was a really busy day with the afternoon spent making a start on the video about money advice – this time it was about Keeping Your PIN Number Safe.  There were two directors and lots of presenters giving good advice about keeping PIN numbers safe.  It is looking really good.
Posted in Our Voice Our Choice South West

Children and Families Act one year on

New time limits for transfer reviews


It is now a year since the Children and Families Act came into force in England on 1 September 2014. Under the Act, a new system of education, health and care plans is replacing the old one of statements of special educational needs. The change is happening gradually over several years and the main group affected this last year were school leavers.

Change is never an easy thing and we have picked up the following issues, both from calls to the DSA helpline and talking to colleagues in other SEN organisations:
  • Local authorities are struggling to meet legally binding timescales for transfer reviews from statement to EHCP
  • Parents are not receiving clear information about the transfer review process and who must be involved
  • LAs are not always following legal requirements regarding professional evidence
In the light of this we welcome the recent announcement by the Department for Education regarding:
  • extension to the time limits for transfer reviews from 1st September 2015.
  • clarification as to the professional evidence required
Time limits
The overall time limit for transferring an individual statement to an EHCP has been extended from 16 weeks to 20 weeks. This is the time between the LA formally notifying the parent of the review to the final plan.
Advice and information
This is the professional evidence which is taken into account when writing the EHCP. There is a requirement under the Children and Families Act not to seek new information unnecessarily. Some parents were telling us that their LA was relying on reports that were years old without seeking updated views. The DfE has clarified when existing advice and information will be considered ‘sufficient’.
Three people must agree that existing advice is sufficient. These are:
  • the LA
  • the parent or young person
  • the professional who wrote the advice
If any of these disagrees, new advice must be sought.
In deciding whether an existing report is still valid the following should be taken into account:
  • how recently it was written
  • how far the child’s or young person’s needs have changed
  • whether it focuses enough on the outcomes sought for the child or young person
The DfE suggests that it is a good idea to start thinking about whether existing reports are sufficient before the formal start of the review process. This will then give more time to collect up to date evidence.
 Who will be affected in 2015/ 16?
In the coming school year, local authorities must transfer
  • all children moving from an early years setting to a school
  • all children / young people changing school at a phase transfer e.g. infant/ junior, primary / secondary, primary / middle, middle / secondary
  • all children / young people moving from mainstream to special and vice versa
  • all young people in year 9
  • all young people leaving school
Your local authority may also choose to transfer additional year groups. You should check your LA’s transfer timetable which should be available on their local offer site
What you can do
  • Check whether your child is due to be transferred this school year.
  • Think about whether existing reports about your child reflect his or her current needs. What other evidence might it be useful to have?
More information
DSA factsheet on transfer reviews
DfE newsletter announcing changes to time limits
Transitional guidance from the DfE – this will be updated with the new time limits
Posted in Education

Information and Support for Maternity Professionals

Maternity 4026-B14-Stephenson-620x220
Antenatal, Neonatal and Postnatal Care: Guide for Practitioners | Published 2015
A booklet written for healthcare professionals involved in antenatal, neonatal and postnatal care. It gives an overview of what Down’s syndrome is, how it can be identified and some examples of people living with Down’s syndrome today. The main focus of this booklet is to provide advice and guidance on telling parents that their unborn or newly born baby has Down’s syndrome. Therefore any clinical information provided is brief in nature. We have provided references for further reading and information. Download: Antenatal, Neonatal and Postnatal Care Guide for Practitioners 2015
If you work in prenatal, neonatal or postnatal maternity services, then you might be interested in our Tell It Right Training.
Prenatal testing
If you are supporting women who are thinking about having screening for Down’s syndrome, the following prenatal FAQs may be useful. The Feotal Anomaly Screening Programme (FASP) website is a good source of additional information about tests during pregnancy, including screening for Down’s syndrome.
A non-invasive prenatal blood test (NIPT) is currently being offered privately to women and can give around a 99% accurate indication of whether a baby has Down’s syndrome. At present, a further diagnostic test (amniocentesis or CVS) would be necessary to give a reliable positive result. You can read further information about NIPT by Public Health England here.
If you or a woman you are supporting require support around making decisions, you can speak to one of our information officers by ringing our helpline on 0333 1212 300.
Expectant parents
If you are supporting women who have had a prenatal diagnosis and have decided to continue with her pregnancy, then you might be interested in our booklet Continuing Pregnancy with a Diagnosis of Down’s Syndrome.
New parents
If you are supporting new parents, please let them know that we can provide them with a new parent pack and that we are here to listen and to answer their questions. If they join the DSA, they will get their first year of membership for free.
We have a new parents’ guide and a leaflet for family and friends which you can download as a reference copy. If you want hard copies to give to families, you can order them from us (0333 1212 300).
There is also a PCHR insert for babies born with Down’s syndrome which contains extra information including specific growth and weight charts, information about child development and a schedule of recommended health checks. You can access more information on the Down Syndrome Medical Interest Group (DSMIG) website or you can obtain a hardcopy from us (0333 1212 300).
If you would like to order multiple copies of the insert please contact Harlow Printing Ltd (0191 455 4286 or
The NCB Early Support booklet provides additional information about Down’s syndrome and is a useful resource for parents from the first weeks from birth across the age range, including looking at schools and other provisions.
Posted in Health