We're back - an update from our campaigns team

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

From summer’s rest to Parliament’s call,
We’re back to fight for justice for all.
With campaigns in motion and goals set high,
No slowing down—onwards we fly!

 

We are back! After a slightly prolonged summer break following the general election being called, and a new Parliament being formed, the campaigns team are back with another blog.

I had wanted to write a quick update blog as soon as the elections were called, but having gone into holiday mode, Glyn and I quickly realised that it was no rest for the wicked! There was much to do to ready our game for the next Parliament. I’m also claiming temporary writer’s block – I don’t know if that’s a real thing, but it sounds both mysterious and plausible enough, so I am sticking to that excuse. In the lead up to the general election, the campaigns team was running at more than 100 miles an hour, so that might also have something to do with it, I guess. That said, that has almost become our signature style: to never stop being busy.

So, what do we have to report on? We finished working with the last Parliament on a high and started off with this one on an equally positive note. In May, we met the then health minister Andrew Stephenson, to discuss our asks in the paralysed bowel care campaign. He was very receptive to the campaign and promised to come back to us within two weeks with a response to our asks. The same week, we also held our first Parliamentary reception at the Speaker’s residence, hosted by the Speaker himself, to celebrate fifty years since SIA was established and the diversity of our community and the injuries too. We were also on the cusp of reaching our 10,000 signatures target with our paralysed bowel care petition.

I want to give a shout out here to Glyn, for all his infectious enthusiasm and unwavering hard work to get the numbers well past 9000, by the time the petitions were closed for the election. We had concerned messages from colleagues and members because they had received notification that the petition would be closing early given that Parliament would be prorogued for the general election. Many were worried that the work we had done to get to the point of meeting the Minister to discuss our asks, was wasted. In reality, the bulk of all the background work and decision-making is done by the civil service officials. Luckily, we have a good relationship with officials and have continued the discussions with them, and through them with the NHS, including getting the green light to hold a nationwide annual awareness day for paralysed bowel care. This is now progressing well, and we will have more to say on it in the coming months.

Women’s Health

As many of you know, one of our campaigns is on women’s health after sustaining a spinal cord injury. This includes the horrific reality of many women who have spinal cord injuries and are in wheelchairs being refused access to breast screening or told to ignore appointment letters. Mammogram machines requires the patient to stand and hold themselves against the machine, which is of course not possible if the patient is paralysed. Shockingly, over the years no one in the NHS or Government, seemed to have thought this is completely unacceptable and is a breach of the Equality Act 2010. Something should be done about it. That something is happening in York and we had an amazing visit there in July to see the amazing work being done. We are currently working with one of our members who has lived experience, the University of York, the York and Scarborough NHS Foundation Trust and Cancer Research UK to help build a robotic arm that can assist the mammogram machine and the radiographer in ensuring access for women in wheelchairs to be screened. The robotic arm was impressive, and the team’s dedication was palpable. We have been invited onto their Advisory Board, and we look forward to working closely with them, to take the cause and the project to Government, for implementation.

I have to say, and I know my colleagues Glyn, Naomie and Stuart who also came to the meeting will agree, York is still a beautiful city. We ended the day with a lovely stroll along the cobbled streets (with Stuart as our very knowledgeable and trusted guide), a delicious meal and even more excitingly for Naomie and me, with a browse through the Christmas shop. That was one of the best highlights of the day.

All Party Parliamentary Group (APPG)

After the York trip (and Glyn’s ventures into space which you can read about here), we thought we were done for the summer and could relax until Parliament returned after conference recess. The universe didn’t get that memo, unsurprisingly. During a routine call with the Parliamentary Commissioner, we learned that the list of APPGs was due in just a few weeks. We had less than a week to find new officers, re-register, and hold an inaugural meeting – all while Parliament was about to go on summer recess. After the General Election, we knew we had to act fast to re-establish the APPG for Spinal Injuries, but the tightness of the timeline caught us by surprise. New rules further complicated things: MPs could now only be officers of six APPGs, with at least one officer from the ruling party and one from the opposition. We had to replace officers and secure a Conservative MP, which proved challenging, given the election results which we are all familiar with. To add to the pressure, meetings had to be advertised a week in advance – impossible, given the short notice. In 48 hours, we scrambled to reconfirm the four mandatory officers, gather twenty new members, and rally support. With the help of the Chief Whip and the Parliamentary Commissioner, we managed to waive the notice requirement. By recess, we not only secured the minimum five MPs needed for the in-person meeting but had eight attend our meeting. The APPG was successfully reconstituted, and our next meeting is set for October.

September has been busy from the word go. I was asked by HM Treasury officials if SIA wanted to provide submissions to the Chancellor for the autumn spending review. We quickly had discussions between Nik, Naomie, Glyn and myself, and I put together a submission for the Treasury on behalf of SIA. Not only was the feedback from officials positive, but I also realised the Chancellor had read it when she mentioned it to me in passing during a separate phone call on an unrelated issue, in my other role. Staying on this other role, I also had the opportunity to feed into Lord Darzi’s review of the NHS verbally, and through that, gave official feedback to the patient safety commissioner on behalf of SIA regarding paralysed bowel care and other shortcomings to access the right treatment, for patients with spinal cord injuries.

Glyn and I were also at the Liberal Democrats’ conference in Brighton, on a gloriously sunny weekend. Despite the lack of sleep at night (no, we were not partying – it was others partying, or rather night clubbing under the hotel we were staying at that kept us awake through the night). We managed to have lots of networking meetings including briefing their health advisor in the House of Lords. We will be following up on the contacts we made in the coming weeks, whilst also keeping a close eye on the other conferences.

And finally..

All in all, it has been a busy few months, as always. It doesn’t look like it will be slowing down either, in fact, the pace is picking up as I write this. I do want to touch something before I end the blog.

This summer’s race riots have deeply affected me, as they have many others, highlighting the urgent need to stand against discrimination in all its forms. At SIA we’re committed to ensuring the welfare of everyone, regardless of background, and there is no place for prejudice in our mission to improve the lives of all people with spinal cord injuries. We will continue to work tirelessly on our campaigns and look forward to updating you in the next blog.

 

Dharshana & Glyn