Thread by @sharon_l_smith

Starter of thread about the @NDSPolicyGroup meeting this evening.

Dr Corcoran (DSRF and Hart group) is chairing tonight’s session it seems (as she has done previously)

Scrolling through smiling photos about the NDSPG before it starts… to a bit of Elvis (a cover)

Baroness Hollins has changed her schedule to be here. Update about how we ‘guys’ are going to play an important role in the consultation process re the guidance

Peter Brackett chair NDSPG welcomes everyone to the meeting

Dr Corcoran running through the agenda. They will tell us what ‘the community’ need to do to tell their views for the consultation process.

Baroness Hollins has joined the meeting. 735pm. Explaining how it’s busy with other Bills going through. She will be in Parliament four days next week

Her main concerns relate to mental health and learning disabilities. How will the reorganisation of the nhs affect these people

She says it’s quite simple - has worked with people with LD and people with Down’s syndrome since 1970s as her son has LD but not Downs syndrome

People with Down syndrome are part of her sons community

Also doing work for DHSC around people admitted for risky behaviours to hospitals and detained long term. Working with minister and LD team in DoH

Was the senior civil servant involved who minister asked to ask Baroness Hollins if she would support the Bill

Every Bill has to go through HoC and HoL - usually at HoL spend longer on Bill as job is to scrutinise legislation and use Experience to examine the Bill

If disagreement - one house amends it - eg HoL putting down hundreds of amends re Health Care Bill. Goes back to HoC who have to debate amends - if don’t agree they send them back, can go back forth ping pong

In the end HoC decides. Private members bills different esp if has gvt support

Dr Fox did a lot of work to ensure gvt would accept it and it would be useful, effective and would make a difference to peoples lives

Baroness Hollins job is to ensure nobody tries to amend it

Bill has now been printed and sent to HoL. Baroness has a copy of it

Dr Corcoran ‘a piece of history’

Bills can’t jump the queue. 11 PMBs which are before this one. Despite Baroness Hollins best efforts and it didn’t arrive in time earliest 2nd reading can be is 18/3

Second reading in HoL is when hear what people have to say. Doesn’t know who will sign up to speak or what they will say.

Baroness Hollins brought it forward from 25/3 to 18/3 by swapping with someone else

18th was best she could do. PMB only debated on Fridays

Only people there will be those there for the PMBs being debated that day. This will be 2nd Bill. Starts 10am. 4 PMB to be debated.

Staff don’t want to stay after 3pm

People want to go home to their families. This is good as it means debate is quite structured. Better than those who are settled in for the night. No maximum speaking time. But likely to be an advisory one. She might get 12mins, others will get 6-8mins. Then the minister

Then have to wait 2wks in case any amendments put down. Then committee report stage and 3rd reading. No speeches if no amendments. The earliest this can be is 1 April

This date hasn’t been mentioned or confirmed yet though. It is possible. 8th April recess starts for Easter. Until 24 April. First date after that is 29 April

She isn’t happy with that. As it gets quite close to end of parliamentary session.

Dr Corcoran asks if she is surprised at cross party support? Baroness Hollins was impressed with debate in HoC. Very respectful.

No awareness of it in the HoL. Baroness Hollins starting to speak to people and they are all very positive

Baroness Hollins asked about the impact of the Bill - she refers back to her medical/research role and having experience of people with Down syndrome speaking. Found it painful to hear that there is an ambition to eliminate Down syndrome

Made them feel unsafe

She was conscious of this. Talking now about abortion time limit of disabled babies.

The other thing is that during the pandemic people with Down syndrome at higher risk. Not well known or well understood.

Important that people have ordinary opportunities in life - home, daytime activities, friendships. Needs to be easier to access.

One question submitted in advance was about DNR. Hope is the Bill will prevent that happening in future

Not just about health - health important but not just about that.

Does this have potential for broader promise for others with LD? Oh yes totally. Baroness Hollins has talked to a number of groups inc LD England to reassure them.

She tried to get a private members bill re LD 3yrs ago but thinks that difficult to get through

Dr C - tailored approach provides power in hands of the community. So grateful to Baroness Hollins for her support.

Baroness replied - always good to have good feedback - if anything she says concerns you then let her know. She wants to do her best!

So now over to Mr Ken Ross. Who is going to talk and remind us about the PMB process. Rachael Ross MBE has covid and unable to make it, sends apologies.

Mr Ken Ross reminding us of all the stuff we have heard before re the ballot etc etc etc

Incredible fast Bill, cross party etc etc

Hoped Bill through in time to have in place for 21 March but not happening now. Will just be pleased that it becomes law

A lot of people not aware of Down syndrome,

Won’t be a silver bullet, even when law may be clumsy. Need to keep doing what we are doing. Willing audience in MPs, Lords and civil servants. Need to help them with the guidance

Need to work together to make this meaningful legislation. Thanks to everyone for all their support. In awe of everyone involved

Now back to Mr Brackett. Lot of work done thus far but scary amount of work once act in place.

Legislation requires SoS (plural not just one) to consult. Understand this will be broad based. Will go out to interested parties for input to process

This is why essential the community has an input NDSPG want to facilitate this input from the community, working with a company who will enable this

Experts across streams, advisory group and the work this company will do. Links pushed out to the community

(Are NDSPG trying to control the consultation? To do the gvt’s work for them?)

(Who is funding this company? Which company is it?)

Focussed research. Will include face to face research. Will produce a report for the government

When receive email please get involved. Want to hear from broad section.

(Does this include people who disagree? Who have been told to never email again?)

Individuals need to reach out, get involved, make schools aware of process. Really want to hear your views

(🤣🤣 no they don’t)

Nicola Enoch now - fantastic opportunity for our community. No consultation at the beginning, it happens now.

(Screen showing asks people to fundraise for NDSPG!)

No harm if you have the time to connect with your local MP.

Encourage them to attend APPG. Let them know the issues

Use #DownSyndromeBill

Share posts - always useful. Everyone working for the group does so on voluntary basis but need funds for resources and events

Please fundraise for NDSPG on world Down syndrome day

Now to the advisory group team - Jonathan and Ffion.

The advisory group has members with Down syndrome from all across the uk.

Started consultation with most important constituency. Founding officers with Down syndrome facilitate the meetings, teaching about the Bill and role liaising with government

So far have discussed themes of employment and health. Communicate using simple words, heartfelt spoken words, gestures and smiles. At relaxed pace, leave nobody behind. Learn from each other

Yesterday Ffion presented at international webinar for researchers. If include researchers with living experience it has to be done in ethical way. Unless doing doing research inclusively it is automatically unethical

Next meeting 14th, still possible to join. Will be more than three meetings. We must!

Special page on website about advisory group, get in touch with Ffion. Just adults with Down syndrome. 18+

Pre-teens and younger people ask your parents to support you to take part in consultation process. WhT are your hopes and dreams?

Ok so have done well for time. Founding officers to answer questions.

Ken Ross - is there any spokes in the wheel, anything that can derail the process? Ken says well no it had gvt backing so it will go through. Important there is awareness. Once law don’t want this to be unfamiliar ground

Need robust policies, speak to your MPs and those in HoL. They want to act as a funnel so do let them know your concerns.

(Not ours though right Ken?!)

Dr Corcoran - we are a funnel not a filter, we want to hear from everyone

(Again not us 😆😆)

Another question - how support people with Down syndrome to access consultation? The advisory group is a focus group discussing key topics. Last week healthcare. Unscripted turn about ways blocked from being involved in loved ones healthcare eg end of life for grandparents

Richness that couldn’t have been anticipated

Provide easy read materials and ask for feedback from those using the materials. Welcome feedback in artwork or videos if unable to speak freely in the group

Question - how long will webinars keep going? Until bill passes and then updates afterward on how going. Nicola thinks important to update people on the consultation and how to contribute.

Want to hear from ‘the community’ and these updates give NDSPG a chance to share

Peter - want ideas of best practice

(I thought they were already the experts?!)

Someone said they were touched by Ffion wanting to make a better tomorrow. Should be part of the mission statement. Important for the little babies running around. What story will they tell in ten years’ time?

Peter - a lot of work thus far, hoping a successful conclusion, need to roll up sleeves, want to provide strong evidence to make best outcomes

Thank you to everyone attending this evening. No date for next meeting yet

Hopefully even more good news next time. Maybe another guest speaker. Thank you for joining!

(Over and out!)