Caroline Playle Reviews Resource for New Parents: Down's Syndrome

Review of Talking About Downs Syndrome Cards

2015 / Lisa Warner 

I’m excited to share this lovely review with you all of Hayley Goleniowska’s Talking About Down’s Syndrome Conversations for New Parents by Caroline Playle.

Caroline Playle is a Mum to three children. One of whom has Down’s Syndrome. When Seb was born she was shocked to be told he had Down’s syndrome. She knew nothing about the condition, aside from outdated assumptions and stereotypes, and was full of unnecessary fear of what the future had in store for her family.

The reality could not be further from that vision. Caroline and her family lead a typical life together, facing the same joys, wonders, challenges and experiences as any family. Caroline started sharing snapshot’s of their lives together to show that Seb is a typical six year old who attends mainstream school, loves reading, football, chips and ice-cream and hates having his hair washed. Caroline shares that her son is a reflection of his family and upbringing, he is not a list of characteristics in a textbook and he is more like their family than anyone else with an extra chromosome 21 . 

What I love instantly about these new Fink Cards is their simplicity. The bold, confident colours and clear font makes them very approachable.

When I was told my baby had Downs Syndrome I threw myself into researching the condition. It was utterly overwhelming, so much information to take in at the same time as becoming a new parent. These Fink cards are absolutely perfect, they are beautifully concise and the card format means they can be taken in small chunks and you choose when and what feelings you wish to explore as and when you feel ready to take on more information. Plus we all know that talking helps with coming to terms with an out of the blue diagnosis. These cards encourage talking in a really gentle way. I can imagine these being so useful at support groups of parents with new babies, getting to know one another and sharing their experiences.

Best of all these cards are about YOU, YOUR baby and YOUR feelings. They are not telling you what will or will not happen, they are not filling your thoughts with all sorts of scenarios that may never come to fruition and they are not limiting your child or your child’s ability. This for me is the genius part of the idea. These cards allow you to explore your thoughts whilst keeping the focus on you and your child and not anyone else with Down’s syndrome.

My biggest regret when I was told my son had an extra chromosome 21was wrongly seeing him as “Down’s syndrome” instead of seeing him as my son. These cards will go a long way to allowing parents to take on board how they are feeling and where they are heading without the unnecessary fear and pressure of a stereotypical idea of what they might otherwise have thought lay ahead. I have no doubt this resource will go a long way to making sure new parents facing a diagnosis don’t miss out on precious, early moment by fearing an outdated or unknown future.

A really fantastic resource for any new parents faced with a recent diagnosis, their families, and medical and health professionals. I have even found them useful in exploring my own feelings, 7 years down the line!

For more information about Caroline please visit her Blog or find her on Twitter and Facebook.

You can order sets of the conversation cards direct from Fink, priced £14.99.

Resource for New Parents: Talking About Down's Syndrome

National Portage Association Back New Resource

Fink Card Review by Kerry Bailey of the National Portage Association 

Talking About Down’s Syndrome: Conversations for New Parents by Hayley Goleniowska and Fink Cards

Talking About Down's Syndrome: Conversations for New Parents

I was honoured and delighted to be asked to review the new fink conversation cards Talking About Down’s Syndrome, Conversations with Parents written by Hayley Goleniowska.

"Q: How did you celebrate your baby's arrival?"

Fink Cards Enable Attitudinal Change and Positive Practices - Jim Blair Consultant Nurse reviews.

Talking About Down’s Syndrome – Conversations for New Parents 

By Hayley Goleniowska (2015)

published by Fink Cards ISBN 978-1-909002-29-6 price £18.99  Order directly from fink cards or call 01872 211782. Also available from Amazon.

Reviewed By Jim Blair, Consultant Nurse Intellectual (Learning) Disabilities at Great Ormond Street Hospital, Associate Professor Intellectual (Learning) Disabilities at Kingston and St.George’s Universities & Health Advisor British Institute of Learning Disabilities

‘Congratulations on the birth of your new baby.’ 

is the emphatic welcome message from Hayley to other parents of newly diagnosed babies with Down’s syndrome. Sadly all too often these are not the words that health professionals utter when giving news to parents that their child has Down’s syndrome. The reality is it is only an extra chromosome, so keep calm and carry on, yet society still conjures up images, visions and a future of little or no hope, worth or purpose for those individuals with Down’s syndrome. How very wrong that is.

Talking About Down's Syndrome - Conversations for New Parents

I am more than just a smidgen excited to be sitting writing this blog post next to a cardboard box brimming with colourful, shiny, inviting packs of cards. The cards are not part of a game. There's no element of snap, no quiz questions. There is no competition or race against time.

The Fink conversation cards are bright and inviting

Proud to be the Tots 100 Blogger of the Month

Thank you Tots 100, for all your support over the years and for helping spread the word about what Down's syndrome is and isn't. You have always listened to my blog and kept me going when the things have got tough. Thank you so much for this award.

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January Blogger of the Month: Hayley Goleniowska

January 29th, 2015 

Bloggers from the Tots100 community are making a difference. They are writing posts which are inspiring others and bringing about change every day. Today, we’re bringing back our regular Blogger of the Month feature, and we’re kicking the series off by highlighting the achievements of someone who has proved just how powerful blogs can be.

Our blogger of the month for January is Hayley Goleniowska from Downs Side Up. Hayley describes her blog as her ‘life’s work’ – she used to be a language teacher and voice-over artist. Seven years ago, everything changed when her second child, Natty, was born with Down’s syndrome. The family learnt about the condition very quickly – and Hayley has written incredibly openly about the tumultuous emotions she felt when their life changed.

Today, Hayley says she is ‘as much of an expert as any parent can hope to be’. She doesn’t want other parents to feel the overwhelming despair she experienced following Natty’s birth and her mission is to show them that Down’s syndrome is wonderful and will enrich lives.

Hayley is a multi-award winning blogger and is regularly asked to contribute to publications. She has started the year on a high and been named in the Health Service Journal’s list of 25 HSJ Rising Stars. This is a kind of medical New Year Honours list, full of doctors and – as Hayley describes them – ‘pioneers and cutting edge thinkers’. She says she is humbled to have been included.

This year, Hayley says she would like to finish and publish a couple of writing projects which she feels are a good way to reach more families. She is aiming to work on funding and distributing copies of her family’s book on Down’s syndrome, I Love You Natty, to neonatal units and health visitors around the UK.

She has other plans too for 2015:

“I’d like to continue working with medical professionals to improve impartial support for parents making agonising decisions at point of diagnosis, and to help ensure a high standard of healthcare for those with a learning disability throughout their lives.

I’m also keen to work more closely with other bloggers and writers, be they parents or young people with Down’s syndrome. Our voices are so much stronger together, and we can share the workload.”

She also has plans for her blog, which she intends to streamline and make easier to navigate.

BLOGGING TIPS

We asked Hayley to share her top three blogging tips with us – this is what she said:

• Stay steadfast in your original motivations for starting your blog and maintain your focus. It will be organic, it will grow and go where it needs to go, you will change, your writing will change, your family will change. That’s healthy, but it’s easy to get sidetracked and become motivated by stats or sponsorship or reviews or competitiveness and this will take your eye off the ball and the bigger picture. Remember we are part of a collaborative group as bloggers, so find those who are like-minded and support each other.

• Be honest, truthful and yourself. Your voice is unique, so find it, hone it and let it be heard.
• However infrequently you post, act professionally. Always consider those who will read your words, and the impact they might have on them. Respect the privacy of others, especially in photos. And consider your children’s feelings ten years from now when they read what you have written. I like to re-read a post the next day before publishing, to see if my mood and perspective has changed, to check that I have been fair and not omitted anything.

Talking about Down's Syndrome - Conversations for New Parents by Fink Cards

Our powerful little cards are ready to pre-order here now, for shipping on World Down Syndrome Day, 21st March 2015. 

Talking About Down’s Syndrome

January 30, 2015  Lisa Warner 

Conversations For New Parents Is On The Cards

A couple of weeks ago I met a woman who was so passionate about changing the way the world views Down’s Syndrome I asked her if she would consider writing a pack of Fink cards to help new parents talk through their feelings and concerns after a new diagnosis of Down’s Syndrome.

I am absolutely ecstatic she said YES!!!

So it is with great pleasure that I can announce, Hayley Goleniowska from Downs Side Up is going to author Talking About Down’s Syndrome – Conversations for New Parents.

Hayley is a Mum who is passionate about inclusion and changing the way the world views Down’s syndrome. Her youngest daughter has the condition, but she doesn’t let that define her.

In addition to her hugely successful blog Downs Side Up and the beautiful book she co-authored with her daughter Mia, Hayley also works with medical professionals to improve the support that parents receive following a diagnosis, whether it be during pregnancy or after birth.

Talking About Down’s Syndrome – Conversations for New Parents will help separate the facts from the myths about Down’s Syndrome and help families get the early support they need.

Not only am I excited to announce that it is going to happen – but we are going to pull out all the stops to launch on 21st March in time for World Down’s Syndrome Day.

View the full range of Fink cards here.

Talking about Down's Syndrome: Conversations for New Parents
is on the cards with Fink cards

Shortlisted in Britmums Brilliance in Blogging Awards

I cannot thank you all enough for nominating Downs Side Up for the Brilliance in Blogging Awards #BiBs, hosted by Britmums, for whom I am proud to be the SEN Editor of a Round-up each month.

The shortlists were announced yesterday* and amid a flurry of excited tweets, I realised that our Down's Syndrome blog was listed in two categories. Well 3 if you count being part of the Special Needs Jungle team as well. (Eeeek!)

* scroll to bottom of page for link to vote now

Warrior Mums by Michelle Daly

I am very proud to feature alongside many inspirational disability advocates and campaigners in new book Warrior Mums.

A few months ago I met a truly inspirational lady, Michelle Daly via Twitter. In  nutshell, Michelle was the youngest person ever to become the legal guardian of someone with a disability in this country back in the 70s, and she has written an incredible story about her journey with Marie in her must-own book With a Little Help From My Friends.

8 Things my Blog has Taught Me over 2 Years

It is 2 years since I nervously sent my first unhoned musings out into the ether via the World Wide Web. Read Blank Blog Blindness here, where I talk about,  

"a feeling of wanting to get something much more important, 
very right from the onset.  

Of wanting to create something that will lift spirits, give support, bring people together, raise a smile and encourage. Yet all the while providing practical tips and real solutions for the everyday lives of parents and educators who have a child with Down's Syndrome in their lives." 

Motivation

Convinced no-one would read, I nicknamed it 'my little blogette', the sharing of our family life with 2 gorgeous daughters, one with Down's syndrome. My motivation was, and always has been, to buy precious early time for parents following a diagnosis. To show them that this path less travelled is never dull, that their lives will go on pretty much as before, and that with the right support their children will achieve great things. To dissolve and shine light on the kind of fear that consumed me in the early months after Natty's birth. An all-round Down syndrome support blog was my aim.

But what has my blog taught me? What have the unexpected lessons been? How has it changed my family? Where has it taken me, my values and thinking? And what has it achieved for others?

1 Blogging is time consuming

As the photos show, 'blogging' doesn't really describe what has become a full time unpaid job for me now. Speaking, writing, training, learning, meeting, talking. If you're thinking of starting a blog you might want to set strict limits for it from the outset. I probably spend 7 hours a day Mon-Fri on associated work, and I'm late for everything because I'm always trying to squeeze in one last call or email or Tweet.

Why do I do it? Why don't I say no when I'm asked to write an article for nothing that takes a week of my spare time? Why do I do an unplanned radio interview at 10 minutes notice which leaves me shaking with adrenaline all day?

Because when I discovered that people enjoy reading and listening, it made it all worthwhile. When one acquaintance said that before reading Downs Side Up she had felt sorry for our family and now she doesn't, I suddenly knew I was changing the perceptions of the wider public towards not just Down's syndrome but disability in general. When a new Mum wrote to me from her maternity ward bed having discovered us via Google, saying that the blog was the only thing giving her hope for her new baby with Trisomy 21, I knew I couldn't stop writing.

I'm still never prepared for the honest, open and heartfelt emails and comments that come my way, often anonymously: 

"Your blog has keep me going the last 3 months," 

"thank you for showing us that there is light at the end of the tunnel", 

"I hope I will one day be as positive as you are", 

"I keep your newspaper articles in my kitchen drawer to boost me on the bad days",

"My friend had a termination but having read your blog she is going to try again and will not have testing this time."

A Typical Day

Wake up and drag self out of bed after 3 alarm bells

Shout 'shoes' and shovel breakfast in the girls while they create dinosaurs or similar

Do school run

Home and prepare dinner (usually chucking a stew in the slow cooker)

Check and replay to emails

Check and post on all social media sites: Twitter, Pinterest, Facebook, LinkdIn, Tumblr, Google+

Write an article for a magazine or journal

Turn down about 5 emails to do reviews

Pick the odd 1 relevant review

Plan my Special Needs Jungle and Britmums columns plus any guest editing I'm doing

Join in any live Twitter chats 

Interview any guest bloggers

Chat to the latest documentary maker or journalist needing advice or a quote

Think about writing a blog post of my own.... time usually short for that.

Run out the door 5 mins late for school grabbing 'lunch' on the way

Do errands, docs appts etc

Homework, precious time with the girls, bed time and stories

Tidy up and the finish off the things that got started during the day (if I don't fall asleep before).

* I never let blogging encroach on family time, so after school and weekends are off limits.*

2 It's an emotional journey

I never for one minute expected blogging to be so all-consumingly emotional when I started. There are days where it gets too much and I have to step back, days of grief where a family I've got to know online have lost a baby, or of fear when I have had to go to the Police about a particularly nasty troll and the bigots voices surround us. A couple of days off usually brings the strength to continue shining a light into dark corners.

Then there are the times when I have been more nervous than I knew possible, frozen with fear over a live Skype BBC TV interview on a tricky subject or speaking to a room of MPs, adrenaline sending me to the smallest room in the house over and over. Then the moments of pride, reduced to tears because Natty has another modelling job or someone has noticed the reason for the long hours and nominated DSU for an award: Outstanding Contribution, Inspire, Woman of the year, Local Hero. And then the invite to Number 10.

None of it seems deserved and I am left humbled. And often crying but more determined than ever.

Yet, dear blog, I have grown a thicker skin, become wiser in so many ways.

3 Blogs have a life of their own

The work surrounding the blog has been organic. There is never a plan in mind, I just follow it's lead. Sometimes Natty's modelling or an award leads to a lot of media work. Likewise if something happens that demands attention I will write for change, e.g. getting a bigot removed from office for example, campaigning for a law change or calling for justice for someone wronged. Then I will be invited to do various events, such as speaking at conferences or Parliament. For this I research the subject matter in depth, such as the facts surrounding disability abortion law, sometimes there are facts I wish I hadn't read. 

Other than that I watch my family and listen to my heart and thoughts in the quietest of moments and write about them.

Just as the direction a blog takes can change unexpectedly, the posts which are read the most is often surprising. It's never the posts that you favour as a writer, never the ones which are the most well-wrtten, but often the most controversial. I am however happy to say that my all time most popular post is the most useful. It's the one that I read at Britmums last year and made you all cry. What to Say When a Baby is Born with Down's syndrome.

4 Writing is unexpectedly cathartic, healing and educational

Writing and speaking about the complicated emotions that come with an unexpected diagnosis for our baby was intended to help other parents, to let them know that everyone adjusts in their own time and way and that a full range of feelings is entirely typical. What I didn't realise was that through that writing, you organise those jumbled thoughts until you reach a point where they all make sense even to yourself, but you will bring them to the fore again. I have spent many evenings crying over the pc, pouring my heart into a post. It's a hugely cathartic and healing process, like free therapy I suppose! 

And by blogging those thoughts you enable friends and family to read them in privacy and at a time that suits them as well. You are able to explain in a way that you would never be able to face to face, and that helps them understand.

Alongside that, blogging is a learning curve. How do write this and pin that and post the other. And the research involved is like doing a degree!

5 There is so much online support

Above all of this I am thankful for the internet enabling the words of bloggers and charities  and support groups and writers and forums and professionals and other parents to help others, but also to bring the support I need in to me at a moment's notice. I am grateful to be part of such a supportive online family, working together to change the world one attitude, one law, one person at a time. Thank you all. If you are reading this, it's you too.

I am eternally thankful for the friends I have made along the way be they parents of other children with Down's syndrome, wise parents of adults, professionals with Down's syndrome or bloggers who make me giggle when I need a change or give me technical advice when I am stumped. Online friends who lift me when I'm tired, authors and artists and playwrites and actors, even some lovely media folk who have remained constant advisors and friends (in between those who would sell their granny for a story). I always said Natty was a great ice-breaker, but our family has met so many wonderful others whose paths would never have crossed otherwise.

6 Not everyone will understand

I can think of one or two, no more fortunately, people in our local community who have barely spoken to me since the media coverage of Downs Side Up began. I wondered at first if they misunderstood my motives, thinking I was trying to be like Jordan and revel in the public eye. Then I wondered if jealousy was playing a part, but finally someone pointed out that blogs like mine hold up a mirror for others to see their own reflection in. And as we are bringing about a subtle change, they see this is a criticism of the way they were doing things before...

7 Blogging can be costly

Paid for every click you say? Ha! Is that one of those urban myths!?

I do get a lot of requests to write reviews, usually in exchange for a cheap plastic toy. 

I say no of course. 

Other writers ask if they can put a post about insurance on my blog. 

I say no again. 

I took adverts off the blog after a few weeks because it was distracting. 

Now there is nothing wrong with blogging for payment, I just choose not to do it because I don't have time and I want the message of Downs Side Up to be clear. So yes, it costs me more than I earn. Software, domain name fees, hosting fees, train fares, blogging event tickets, accommodation, even postage. 

Worth every penny though. 

8 You have to do it naked

Not strictly true of course, but, spurred on by Kate on Thin Ice, getting naked to bring awareness of miscarriage, to encourage mums to celebrate their post-birth bodies and to forgive them for the losses while raising money for Down Syndrome Awareness Day was just one of the more curiously unexpected events of the year. Read Downs Side Up Uncovered here to find out more.

I wonder what the next year will bring?

I hope you'll pour balm on more hearts dear blog, open more eyes, make some real change, get our collective voices heard. I know you'll bring new friends, new inspiring plays or films or dance or books to watch and review. I will meet more adults with learning disabilities who will lead the way. We'll learn more tips and tricks to make life easier, often from medical or teaching professionals and we'll share them in the melting pot. Blog, you are now a hub, drawing inspiration to you like a powerful magnet. Thank you.

Oh, and who knows, maybe I'll find a sponsor!

You might like to read our most popular post 

What to Say When a Baby is Born with Down's Syndrome here.

Kicking off Learning Disability Week with a vlog about confidence and friendship

I was asked by the Foundation for People with Learning Disabilities to put together a designated blog post for them as part of Mencap's Learning Disability Week #LDWeek13 this year.

I was honoured, and set about thinking how best I could join in with their theme of planning for the future and safeguarding. At 6 years old, Natty's adult life seems far far away, so I decided to chat about the importance of self-help skills, and specifically making friends, which in turn boosts self confidence and self-esteem. Vital commodities for us all.

Armed with a new iMovie Phone App, I decided to try my hand at a vlog, incorporating an interview with Natty and some lovely photos. I warn you, I am very much an amateur, but I do hope you can find a few minutes to sit and enjoy our chat and then join in with the #LDWeek13 celebrations by using the hashtag on Twitter, posting to Mencap at Twitter and Facebook and adding your posts to the linky below.

Watch out for my equally suspect poetry skills on Wednesday, when my #superhero post for Mencap airs!

                          

All Party Disability Abortion Law Inquiry Report

You may recall I was asked to give evidence in Westminster at the All Party Disability Abortion Law Inquiry aimed at reviewing an old law that allows abortion 'up to and including during birth' for babies 'at significant risk of serious handicap' (all undefined). Representatives from all the major parties convened and listened to evidence from various groups and individuals.

Much of the discussion centred around support, counselling and advice given to pregnant women at point of diagnosis, my own personal crusade.

Today the report is released. 

I attach below the press release which highlights all the main points. I have to say, I find it all encouraging. It says exactly what we all hoped it would.

Reduce limit for disability abortion to 24 weeks in line with others.
DS is not a 'severe handicap' but a mild to moderate developmental delay.
Provide support, counselling and unbiased facts for parents to make informed choices.

Now we just have to wait for the next step....

READ THE FULL REPORT HERE

PRESS RELEASE FROM FIONA BRUCE MP
Embargoed until 11.00am Wednesday 17^th July 2013

End the “discrimination against unborn disabled children”, says Parliamentary Report 

The Government must review the Abortion Act and end the discrimination against unborn disabled children, says a major new Parliamentary Report published today.

The report says that the current legislation is out-dated, allowing abortion for disabled babies up to birth and is in urgent need of reform.

It sets out a raft of recommendations aimed at reforming the rules governing abortion on the grounds of disability and ending the wide disparities in how the Act is applied across the country. 

The report, the work of a cross-party Commission, chaired by Conservative backbench MP Fiona Bruce, says: “...it is time to review the moral, ethical, legal and practical framework within which this provision of the Abortion Act operates and how the law applies to a fetus beyond the age of viability...”

“...Parliament should consider at the very least the two main options for removing those elements which a majority of witnesses believe are discriminatory – that is either reducing the upper time limit for abortions on the grounds of disability from birth to make it equal to the upper limit for able bodied babies or repealing Section 1(1)(d) altogether.”

Mrs Bruce commented: “This is an incredibly difficult and emotive issue, which for too long governments of all colours have failed to properly review. In part this is due to the very strong feelings on both side of the debate, usually traduced to an argument between pro-choice and pro-life, as one respondent told the Commission.

Fiona Bruce MP continued: “Given the advances in medical science and the very positive changes in our attitudes towards disabled people since the relevant law was enacted over twenty years ago it is time to review it.”

The Commission received nearly 300 submissions (299) in both oral and written sessions and found “...that there continue to be strongly held and polarised views on how the law treats abortion for babies with disabilities...

“The vast majority of those who gave written evidence believe that allowing abortion up to birth on grounds of disability is discriminatory, contrary to the spirit of the Equality Act, and does affect wider public attitudes towards discrimination.”

Members were drawn from both Houses of Parliament and included, its Vice Chair Virendra Sharma MP, Chair of the All Party Parliamentary Group on Down Syndrome, Lord McColl of Dulwich, who served as Parliamentary Private Secretary to John Major, Robert Buckland MP, Chair of the Autism All Party Parliamentary Group and Chair of the Conservative Human Rights Commission, former TV presenter and Liberal Democrat peer, Baroness Benjamin of Beckenham, Rob Flello MP, the Labour Shadow Justice Minister, crossbench peer and eminent psychiatrist, Baroness Hollins of Wimbledon, Paul Maynard MP, Chair of the All Party Parliamentary Group for Young Disabled People and former three-time paralympian Baroness Masham.

Controversially, the Commission rejected calls for a list of conditions to be published that would meet the “seriously handicapped” criteria as “such a list would inevitably discriminate, on arbitrary and subjective grounds.”

It heard that pregnancies beyond 24 weeks can only be ended on the basis of a “substantial risk” of the child being “seriously handicapped”.  However, the Commission found that the law does not define either “substantial” or “seriously”.

In 2012, according to Department of Health, there were 2,692 abortions carried out under “Ground E of the Abortion Act 1967,” a 17% increase on the previous year; 160 of these abortions took place after 24 weeks.

The Commission expressed concern that some treatable conditions were still being used to justify abortion on the grounds of disability.

They heard that potential disabilities such as cleft palate and clubfoot continue to be used in a small number of cases under Ground E, although in a majority of these cases it was suggested that there were other genetic factors present.

Professor Joan Morris  confirmed to the Commission that she estimated there had been seven terminations in the last decade for cleft lip only and estimated around five for talipes (club foot), but there were no reliable figures. 

The Committee also heard evidence that Down’s Syndrome accounted for around a quarter (512) of all Ground E abortions and that approximately nine in 10 (90 per cent) of babies diagnosed with Down’s Syndrome were aborted.

Leading disability rights campaigner, Mike Sullivan of Saving Downs, called for the law to be changed as the condition was no longer considered to be “serious handicap”.  

“The law should be amended to exclude Down’s Syndrome as it does “not meet the test of a ‘serious handicap’ since it is a mild to moderate developmental delay” and the decades of experience and research on lives lived with Down’s Syndrome prove beyond a doubt that Down’s Syndrome does not meet that criteria.”

Mrs Bruce concluded: “What quickly became clear is that there are wide discrepancies as to how the current law is being applied. Worryingly we heard evidence that the way parents are supported is widely variable across the country - ranging from the exceptional to the appalling; we heard how parents can find themselves only being given a leaflet on abortion, after being told the shattering news that their unborn baby could be disabled, rather than a support package and information on the specific condition diagnosed. Some parents told us they felt pressured into having an abortion and that they had to find out for themselves from the internet information about the condition diagnosed and any potential support for them should they choose to keep their baby.

We also heard good examples of support and counselling, and one of the most important of our proposals is to recommend that best practice guidelines are developed to ensure parents are provided with practical and balanced information from trained experts as soon as possible after discovery of a fetal disability, so they can make an informed choice.

As one parent told us, summarising what many others reported: “To give a family a diagnosis of a disability and then to immediately follow that up with the advice that they can have a termination without any other information is simply not acceptable in a civilized society.”

I hope our findings will kickstart and inform a much needed debate on this issue.

It can’t be right that nearly 50 years after abortion was legalised, we still discriminate against unborn disabled children, even on conditions that we would not describe as serious.”

ENDS

NOTES TO EDITORS

The current law permits an abortion to take place up to 40 weeks (or birth) if tests for disability indicate that there is a ‘substantial risk’ that the child might be born ‘seriously handicapped.’ The law does not define these criteria and they are broadly interpreted.

The legal limit for all other abortions is 24 weeks.

In light of the current legal position, the Parliamentary Inquiry into Abortion on the Grounds of Disability sought evidence from parents, medical practitioners, academia, support groups, disability groups, lawyers and individuals with an interest regarding the current theory, practice and implications of the approach to abortion on the grounds of disability in the UK.

The terms of reference of the Commission were to:

·         Establish and assess the intention behind the law governing abortion on the grounds of disability.

·         Establish how the law works in practice and is interpreted by medical practitioners.

·         Determine the impact of the current law on disabled people and assess the views of       groups representing their interests.

·    Assess the effectiveness of the information and guidance provided to families following the diagnosis of a disability and the impact that has on outcomes.

·      Examine how the law, guidance and support for practitioners and families can be developed going forward.

Committee membership

Fiona Bruce MP (Chair)

Virendra Sharma MP (Vice Chair)

Paul Maynard MP

Baroness Hollins of Wimbledon

Robert Buckland MP

Lord McColl of Dulwich

Stuart Andrew MP

Baroness Benjamin of Beckenham

David Simpson MP

Baroness Masham of Ilton

Rob Flello MP

Dr John Pugh MP

Baroness Knight of Collingtree