A day out in Westminster

SIA in Whitehall and Westminster – the regular blog from our campaigns team

Their busy schedule never wanes
They’re not perturbed by wind or rains
Ideas keep flowing
So they keep going
The team that calls themselves “Campaigns”!

One of my former bosses once said to me “If I end up only saying two things, make sure they are the two things that make the most impact.” He had managed to lose both our copies of a well-written speech that he was supposed to make, and it was five minutes before he was due on stage. I had to quickly put something together from memory, on the back of a receipt (this was back before modern mobile phones became the norm in Government provided tech, we had pagers instead).

In that spirit, if I say only two things in this blog that you remember:

• I am incredibly proud of Global Glyn
• I am even more incredibly relieved that the Parliamentary roundtable has finally taken place (with even better turnout and results than we had envisaged).

Global Glyn

How did Glyn turn into “Global Glyn”? Well it all started a few weeks ago with thanks to Elon Musk. His Neuralink company was all over the news with the first brain chip implantation to control machines. While my inner geek was excited and read up all about it immediately, the strongly ethical part of me did not like the future scenarios it presented.

Well, thanks to his very efficient “agent” Stuart, guess who gave an excellent opinion to the BBC which was subsequently reposted around the world? Our Glyn of course. He was read about in Canada, Singapore and many other places. Later the same week, Glyn gave an interview on BBC Three Counties Radio on the issue of adapted housing for people with disabilities. Glyn’s experience personally and professionally drives his passion for the subject on adapted housing, and whilst this one didn’t quite travel the world, Glyn did equally well on two important issues. (For those who weren’t listening at 7am that morning, you can hear his interview here – skip to 1:09:30).

As I mentioned to our wider team, I read and heard both interviews with (almost maternal) pride. The fact that Glyn spent the rest of that day calling me Mum was endearing, but not that funny!

Parliamentary Roundtable

Born on a similar piece of paper as the then Prime Minister’s last-minute speech, was the concept of the Parliamentary Roundtable. Naomie, our head of communications was writing a paper for the board and we were all asked to contribute future KPIs. My proposal was that in order to create a bigger impact than through Parliamentary questions and debate we could get the experts in a room with the decision-makers and have a proper discussion. It was a spur-of-the-moment thought, but I was keen to move the campaign from awareness to change mode and even decided in my head that it should be done in February. Enough time to organise, but far enough to escape the pre-election period in case a GE was called for May.

 

 

This was in back in September, Glyn had been in post for a month, I had just started, and campaigns has become increasingly busy since then (see previous blogs if you don’t believe me). By mid-November we suddenly realised we hadn’t done anything about the roundtable, and it was looming intimidatingly on our to do list. Even the seemingly simple task of booking a room took a few weeks so it was mid-December when we finally confirmed the date and venue. The last day in February. In a leap year. What are the chances.

The New Year rolled in and we put together a list of names and email addresses so invites could be sent. Just for the fun of it we also decided to put together a booklet for all attendees and print formal name cards for the table (we do like causing extra work for ourselves!). To drum up interest in the event Glyn contacted, I should say practically hounded, all Parliamentarians who had ever expressed an interest, as well as all his other political contacts. For my part, I contacted every possible name in the healthcare sector with a vested interest in the neurogenic bowel, and a lot of my civil service, NHS, political and even royal contacts. Between us, we contacted anyone and everyone who we thought would have an interest in the topic. Note to anyone who has to do anything similar in the future: emails to senior healthcare staff garner quicker responses if you add a string of your own qualifications when you sign off! We managed to achieve our goal though. We’d got more people interested in attending than the booked room could accommodate – definitely a result.

The final ten days before the event involved pulling together everything needed as well as meeting and briefing lots of people. So much work for just two people – all amongst the rest of the ongoing campaign work AND preparing our session on unconscious bias for the staff day. The constant encouragement and understanding from Naomie and the wider comms team as well as Carol, (our SCI Specialist nurse lead for north regions) was always a boost. At this point, I also want to give a shout out to Glyn’s partner as well as my husband and daughters, for all their help, amid their own busy schedules.

 

The day itself dawned cold and grey, but we didn’t let the forecast rain dampen our mood. We all met up early, and after the extensive security checks, we were led to a waiting area. A lot of the attendees had also decided to come early, so like any good political meet up, we started chatting and lobbying them much earlier than the roundtable itself.

At the roundtable, we had Parliamentarians including a shadow member of Government, the department of health and social care’s long term conditions team, representation from the office of the chief nurse at the NHS, the National Spinal Centre, MASCIP, many of the NHS Trusts from across the country, including the bladder and bowel leads from Wales, Scotland, and Northern Ireland. It truly was a full house with the rest of us from SIA, apart from Carol, sitting on the well-padded window seats.

It was a positive, enthusiastic and purpose-driven discussion; chaired efficiently by our very own ambassador, Dr Mohammed Belal. So many attendees commented afterwards that they had never been to an event like this. They were so pleased to have been invited and wanted to continue to be part of the campaign. At the end of the discussion, when the group reached consensus on many of the outcomes we were hoping to have, it felt like quite a pivotal moment.

This had now become a campaign for change.

The rest of the day was equally amazing. We toured the Speaker’s apartments and the inner corridors of Parliament whilst recceing for another event we are organising to celebrate our 50^th. We took our long-awaited photos in front of Parliament and of course didn’t let the rain stop us from once again, visiting the mandarins’ favourite Whitehall pub. We also had an adjournment debate at the end of the day, on spinal cord injury and young people. Through it all, Naomie, Carol and George were absolute wonders, helping Glyn and me in every way they could. I do want to say a huge thank you to them, the wider team, and every member of staff including Nik (our chief executive officer) who gave us so much encouragement.

I want to give a shout out here to Mark, (director of programmes)  who despite not being able to come because of other responsibilities at the staff development day, made the time to talk to both Glyn and I to explain and ask about arrangements, and to our lifesaver Gil, (operations assistant) who helped us print out all the papers for the booklets.

I also want to give a special shout out to Glyn for being an absolute champion through it all, including for not screening my many calls with weird ideas. Yes, Glyn and I did work through weekends to get things done, but it wouldn’t have come together so beautifully without the support and encouragement of all of you. You know who you are, each one of you.

In other updates, we are now in the process of:

• applying to become a Core Participant (CP status) to the Covid 19 Inquiry (a CP status will enable us to be part of the inquiry and ask questions),
• organising an Extraordinary General Meeting of the All Party Parliamentary Group on Spinal Injuries to bring ourselves in line with the new Parliamentary rules,
• organising the first task force meeting on women’s health,
• organising the 50^th event at the Speaker’s apartment venue alongside Stuart, our PR and media coordinator, to raise awareness of spinal cord injury,
• organising sessions for the forthcoming Rebuilding Lives Conference and
• taking proactive initiatives to have more integral working with the NHS’s Diversity and Inclusion team.

Our petition, launched in January, asking Government to ensure that every NHS trust has a bowel care policy and trained staff, has now reached one third of the 10,000 signatures needed for a Government response. Thank you to all who have signed and, thank you to everyone who has recorded a video asking people to sign. If you haven’t signed it yet, please do so. The link is below.

sign our bowel care petition here

I was also informed today that because of lobbying by us and others, especially Parliamentarians we spoke to, the department of health and social care have finally issued guidance on breast screening, specific to women with physical and other disabilities as well as women who have other intersectional characteristics protected by the Equality Act 2010.

Visit the government website to find out more about guidance on breast screening specific to women with physical and other disabilities.

This is an amazing development, especially coming on the eve of International Women’s Day, which falls on the 8^th of this month. Of course, there is still more to be done. All in all, it continues to get even more exciting and busier in the campaigns team.

 

Dharshana and Glyn