Portsmouth group celebrates World Down Syndrome Day at historic Westminster event as fight for 'landmark' bill continues

Rachael and Ken Ross, co-chairs of the Portsmouth Down Syndrome Association and founding officers for the National Down Syndrome Policy Group, and their son Max, welcomed more than 140 guests to afternoon tea in Westminster as they celebrated the progression of the Down Syndrome Bill.

Today is the first World Down Syndrome Day in history to see people with the learning disability and their families celebrating the special event at Westminster.

At the reception, the Rt Hon Dr Liam Fox MP praised the hard work of the NDSPG and heralded the 'landmark' Down Syndrome Bill.

The Bill has been introduced as Dr Liam Fox’s Private Member’s Bill, and focuses on improving the lives of those with Down syndrome.

It is co-sponsored by cross-party MPs and politicians from across the political divide.

PDSA co-founder Ken said: 'We're promoting the Down Syndrome Bill as much as possible.

‘The bill has cross-party support in the House of Commons.

‘It’s going to be an amazing piece of legislation, affecting education, the health service.

‘Today is all about awareness, getting people in the House of Lords to be aware of what's at their fingertips. It's going to change people's lives.'

The Bill recently had its second reading in the House of Lords.

A successful third reading in April could see the Bill become law - which would be a world-first piece of legislation.

PDSA co-founder Rachael said: ‘As the Down Syndrome Bill continues along its legislative process, we are delighted to be able to gather today in the Houses of Parliament on World Down Syndrome Day to celebrate the hopes and aspirations of people with Down syndrome.

‘We recognise that this is just the beginning of our journey but are driven on by the energy and enthusiasm of our community for the positive change that the Down Syndrome Act will bring.'

At the celebration, representatives from international, national, regional and local organisations joined with people with Down syndrome and their families, as well as celebrities including actor Tommy Jessop from Line of Duty and Call the Midwife writer Heidi Thomas.

Several speakers, including Tommy, Heidi, and Chichester MP and minister of state for care and mental health Gillian Keegan, took to the podium to thank supporters and look with pride at the Bill's success so far.

Tommy said: ‘Monday, March 21, is the most exciting World Down Syndrome Day ever so far.

‘We are celebrating the lives of people with Down syndrome and the Down Syndrome Bill going through The House of Lords.

‘We want to say “We are here, we have a voice, we have things to say”.

‘At last people are listening.

‘The Down Syndrome Bill should improve lives so that everyone with Down syndrome can live our lives to the full, dig out our gifts and be fulfilled.

‘I want to thank Dr Fox, MPs, my colleagues who have Down syndrome and everyone supporting this bill.’

Dr Fox was selected as one of only 20 members this Parliamentary session, and for the first time in his 30 years as an MP, in the Private Members’ Ballot to bring forward a Bill of his own choosing for this Parliamentary session.

A former NHS Doctor and GP, Dr Fox decided to use this opportunity to bring forward the Down Syndrome Bill as his Private Members’ Bill.

The MP has been working alongside the NDSPG, which supports people with the learning disability to have a say in the formation of policy in matters that impact their lives.

Max Ross, PDSA and NDSPG ambassador, is among the campaigners teaming up with Dr Fox to promote the Bill.

Max said: ‘I want people with Down syndrome to be given better opportunities and provision.

‘That’s why I am an advocate for the Down Syndrome Bill and I am working with Portsmouth DSA and Liam Fox in Parliament to help improve legislation.’

Fionn Crombie Angus is a founding officer of NDSPG.

In a speech, he told the room: ‘All over the world, amazing achievements are made by members of our tribe.

‘It's about community support and validation and it's appropriate that it is in the UK, where our condition was first recognised, it's the first to make this step.

‘We are proud to get this far - there is a lot more to do, but let's take a moment to feel pride.’

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Peter Bracket, chair of NDSPG, said: ‘To come so far within such a short time is remarkable. We have been blown over by the support of MPs.'

Jake Binns is a member of the NDSPG’s advisory group, and meets once a month to discuss the bill. All members of the advisory group are people with Down syndrome.

He said he was ‘excited’ about the event and ‘happy’ to be at the event today.

His mum Zoe explained that Jake meets with the communication groups, and added: ‘It’s really great. I don't know any charity across that country that does anything like this.'

Ken Ross added: ‘We are at the cutting edge, making sure that people with Down syndrome get to have a say.’

Robin Brooks, seven, and her mum Stacey Brooks travelled up from Portsmouth to attend the event, which was held in the Terrace Pavilion.

Stacey said that the event was brilliant, and added: ‘It’s really exciting for Robin, the opportunity to come to London.

‘She’s getting more of an understanding of what's going on around her and what it means to have Down syndrome.

‘It’s inspiring for her to see there are other people with Down syndrome that are standing up.’

A message from the Editor, Mark Waldron

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