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Continuing the campaign march!

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

Wise words from her Majesty
Remain pertinent though she’s passed
We only hope the work we do
Makes a change that likewise lasts

International women’s day, the Queen and access to breast screening

March began with the marking of International Women’s Day on 8 March. The following week, as part of the UK’s delegation at the United Nations’ 68th Commission on the Status of Women, I spoke about how far we have come on gender equality but how much further we need to go. I was able to mention SIA ‘s campaign to give equal access to screening tests for women with spinal cord injuries: something I would have never imagined was not in place before I came to SIA. As I was speaking, I recalled my conversations with our late Queen.

Two things always came up when we talked: how our individual faiths kept us going through good times and bad; and the extraordinary strength we have as women to manage so many things at once, despite so many setbacks and difficulties. During one such conversation, after I had just returned from doing humanitarian work in a conflict zone, Her Majesty said, “Time and time again, when the going gets tough, it is the women who get attacked first, but it is also the women who find the strength to not just overcome, but also renew and rebuild society”.

Her Majesty’s words came to my mind once again as I started writing this blog; I cherish her nuggets of wisdom and I do miss her and our conversations. Some of the stories I have heard since we embarked on this campaign are horrifying, but the strength of the women who have continued to overcome hardships and still want to do more to help others, is beyond amazing.

One such person is Jane, a member who has not only been instrumental in inspiring our current campaign but is also helping us forge a campaigning partnership to find a robotic, artificial intelligence-based solution to make access easier. Partnering with the University of York, the York and Scarborough Teaching Hospitals NHS Foundation Trust and Cancer Research UK, the project is in its early stages but has received a £100,000 grant from Cancer research UK. We will be visiting the lab where it is being developed in the coming weeks and will be working on taking the project to the Government and NHS, so that it can eventually be embedded within the screening system. We are very excited for it and hope to share more as things progress.

Bowel care petition

In the middle of March the bowel care petition crossed the fifty percent mark for signatures required to receive an official response from the government. A big part of the credit for that goes to Glyn, who has been tirelessly lobbying everyone to either sign, make a video asking people to sign or include a request for it to be signed, in all their speeches and presentations.

We have no plans to be complacent though and will continue to push it further to reach 10,000 signatures. If you haven’t yet signed, please take a moment now to do so. If you’ve got family and friends who have yet to sign, forward the link, and help make sure every signature is counted.

sign the petition here

Following the bowel care roundtable last month, we are drafting the letter from participants to send to the health and social care select committee. We are also liaising with the clerk to the committee, as well as lobbying the committee members, regarding a possible inquiry into neurogenic bowel care in hospital settings.

Cornflower Ball
One of March’s big highlights was attending SIA’s Cornflower ball as invited guests of Hudgell. We learnt a lot about the valuable work they do and had a beautiful evening with their team. Glyn and I would like to express our thanks to the fantastic team at Hudgell for the invite and for looking after us so well.

It was also lovely to meet our chair of trustees, Faizal, at the ball. We talked with him about the campaigns we are working on and he and I reminisced about our medic days and Apna NHS, the organisation for south Asian healthcare professionals. I also want to give a huge shout out to Laura, Natalie and the rest of SIA’s volunteer team, for the astounding job they did in getting over 700 people into a room and actually making it all look like smooth sailing. Amazing! I even met a school mate from years ago, on the dance floor, who has since become a friend! It goes to prove that it really is a small world.


Last week Glyn and I were back in Westminster: we are there so regularly we are thinking of leasing a meeting room there rather than having to get passes each time! This time it was for the Extraordinary General Meeting for the All-Party Parliamentary Group on spinal cord injuries. Following the rule changes from the Office of the Parliamentary Commission, APPGs now need four officers and twenty members (all Parliamentarians from both the House of Commons and the House of Lords). We had to employ every diplomatic, persuasive, and negotiating skill we had, and in some cases call in favours from former premiers, to get to the magic numbers. APPGs are an important voice for the public, in the corridors of power, to discuss the various issues we face in our day to day lives as an impact of Parliament’s policies or lack of, so being able to continue means we still have a vital pipeline directly to MPs. SIA and the work it does is suddenly quite well known in Westminster circles, and we are building more strategic relationships across both Houses, which is brilliant.


Other news
We are working with the NHS’s Race and Health Observatory and other wider charities to look at the health inequalities that people with disabilities as well as those with disabilities and other intersectional factors, like gender and race, face in the healthcare system. This is an extension of our campaign for women with spinal cord injuries to be able to access screening tests, and the work we are doing to change the guidance on the diagnosis and treatment of pressure ulcers to include the difference in colour changes and what to look for, when it comes to non-Caucasian skin tones.

We are negotiating with officials and MPs to have a debate on the neurogenic bowel care situation across the country, either at Westminster Hall or as an adjournment debate.

We are organising the first task force meeting on women’s health for mid to late spring. For those who want to know more about our task force and the members, please read our campaigns blog for January

We are in the midst of sending out invites, negotiating various details with the Speaker’s office, and briefing the Speaker for SIA’s 50th year event which we are organising at the Speaker’s apartment to raise awareness of spinal cord injury.

As always, we have a lot going on in the campaigns team, but we have a lot of fun doing our jobs and it is very rewarding too. As Glyn asked me, whilst we took another walk down Embankment, as we were too early to clear security, “Do you miss the hustle and bustle of your old jobs?”. My honest response was “Yes, maybe sometimes I might do, but I am enjoying being on the other side, looking in, and using what experience and knowledge I have gained, to make a difference to at least one vulnerable person is what makes it worthwhile.” We both agreed on that.

Once again, a huge thank you to all our colleagues from across the organisation who have never hesitated to support, help or be patient with us; enabling us to keep going. You know who you are. 😊


Dharshana and Glyn