Fighting the cause..... Epsom & St Helier NHS Trust - a long read!

As you may recall, Christmas 2017 Lucy spent 10 days including Christmas Day in our local hospital. Whilst the actual medical treatment was great, it was obvious they did not have a clue on how to treat a transgender patient and even worse, what their legal obligations were.

In one of my blog posts I did update with what I did but to recap, once Lucy was home, I contacted the NHS Trust PALS to obtain a copy of the patient Transgender Policy only to find there was none, not even a staff one. Instead of making a complaint, I looked for ways that this situation could be changed and how I could work with the trust to facilitate change. My rationale behind this was that if Lucy was to get ill again that she would end up in one of the Trusts hospitals but also she cannot be the only ‘trans’ in the village and if I don’t make an effort to change anything then other community members will suffer too. If I had made an official complaint, I pretty sure I would have received a letter of apology, but nothing would change.

PALS forwarded my details on to the Equality, Diversity and Inclusion (ED&I) Manager and at this point I had not given any details of the issues we had faced, only that I wanted a copy of their transgender policy due to some issues my transgender wife had faced. It took a few nudges and some veiled threats before the DI Manager eventually got back to me where a meeting was arranged so we could discuss the situation.

When I met him in April 2018, he took copious notes and was totally shocked at how Lucy had been treated. He admitted the Trust was failing by not having any policy and acknowledged that they had also probably broken the law. We discussed various ways this could all be addressed and he said that he would take this further. I have a friend, Carole, who is a sister at one of the Trust’s Emergency Departments and she had mentioned that they use ‘link nurses’ who are the expert and champion for a certain area, e.g. MS, Mental Health etc. She was willing to volunteer herself as a co-ordination point ‘link nurse’ and be the nominated person for all things ‘trans’. He thought that this was a great idea and would explore ways to expand on this and I gave him all her relevant contact details. I also mentioned that I had a friend, Jo Lockwood, who runs the training consultancy See Change Happen and that it would be beneficial to get her involved which he agreed. Although it felt like a positive meeting it did feel that the ideas for change were only coming from me.

After a few months we didn’t seemed to have progressed any further so I started hassling him again. Several emails later another meeting was arranged with him and the head of HR in October 2018 (yes 6 months from the last meeting!!) where we went over exactly the same as we had discussed before and the whole meeting felt pointless however this time there felt more of a promise to drive this forward. Again we discussed more ideas I had raised regarding induction and initial training and ongoing refresher sessions plus ideas for 'link' nurses. It was also mentioned that they were in the process of creating a staff Transgender Policy and was being done by a member of the HR team who has a trangender friend, which although in itself is great news, does not assist patients where this whole issue has arisen from. I raised this as an issue and assurances were given that they would give me sight of this document (I'm concerned that it is being written by someone with no proper knowledge or training) but also there would be patient policy following 'soon'. I did reiterate that I had gone down this route rather than make a complaint where I would have received a letter of apology (lip service) but nothing would change which wasn’t acceptable.

After some email exchanges some ‘bite size taster’ sessions were eventually arranged at each of the Trusts hospitals after a few cancellation of some booked sessions. These were to run for about an hour and a half and would be open to all staff and were to be hosted and run by Jo Lockwood which she had generously agreed to present for free. The premise is that these would be partial introduction sessions with a view to running full sessions at a later date. The only problem was that the timing of the start of these sessions was 9.30am so most people who work in the areas most affected would have had just come off a night shift at 8am and wouldn’t hang around. At least they were happening at last which was good.

Both sessions ran mid December and were held at each of the Trusts 2 hospitals. The first session had a low attendance of about 10 people mainly from HR however the 2^nd session ran with about 20+ people from varying departments including my friend Carole who had hung round after a night shift just to come.

Jo’s presentation was great and really highlighted the lack of knowledge held by the staff, including the ED&I Manager! The format that Jo used included a multiple choice quiz which was interactive by using your smartphone via the app, Kahoot! Even though I live and breathe the trans life, there were some choices in there that I was not 100% sure of and it highlighted how much terminology has changed over the 18 years we have been part of the community. It also highlighted the severe lack of knowledge held by the Trusts employees, no matter which department they worked in. It was interesting to hear the discussion around the topics that Jo raised as the sessions progressed. She covered many different aspects including definitions, terminology, privilege, legal aspects, a short film with Jake Graff about the struggles of being transgender (which makes me cry every time I see it including during these sessions where I struggled to hold the tears back as even though I am not trans, I live these struggles through Lucy and our friends) and lots of other subjects. It was a whistle stop tour of what a full presentation would look like. Once Jo had finished, which had over run as everyone was so engaged, I gave a small talk about what had happened to Lucy and the impact it had had on us. Everyone at each session were openly horrified and vowed that changes must be made.

At one session there was a midwife who said that they had had a pregnant transman come through the system and whilst they found a way to facilitate his needs, the maternity system let them down as they couldn’t select ‘male’ as gender or ‘Mr’ as a title and there was no work around. As a result the trans guy had ‘female’ all over his record and was referred to as ‘Ms’. She said that they had explained the situation and apologised but how awful must that have been for him and you can just imagine the errors with pronouns this would have caused in a delicate situation. The midwife felt mortified by this at the time and felt even worse now she had gone through the taster training which had highlighted lots of issues.

At the second session, I was approached by a very excited man. He introduced himself as the PALS person that I had first spoken to when I rang in. He said he has only been in the job 3 weeks when my call came through and he remembers me pushing to get things sorted. He felt very proud to have been part of the process that had led to these taster sessions and was very enthusiastic about the Trust making changes. The Director of Communications and Patient Experience was very enthused with everything and thought that it needed to be presented to the board. She asked if Lucy and I would be prepared to be filmed for part of a training package which they could put together for staff. She believes that real life experiences stick in peoples minds better when they can relate it to real people. Of course we would be willing to do this.

Everyone who attended the sessions were very positive about how they went but also felt disappointed with their lack of knowledge. Lots came after to talk to me and they reiterated how horrified they were at what had happened to Lucy. Various suggestions were bandied around and Carole came up with lots of great ideas. It felt like there was traction at last.

I didn't contact them any further as Christmas came and went and by mid January I had not heard anything so dropped the ED&I Manager and Head of HR an email asking what the next plan of action was to be using the momentum following on from the success of the taster sessions. Nothing..... not even an acknowledgement or out of office response. I left it a week and then sent a chasing email, very strongly worded... it was over a year from when Lucy was admitted and still there were no changes for patients (or staff) and I was starting to feel incensed! The whole point of not making a complaint was to push for change and here we are a year later and nothing at all had changed AT ALL. 11 days later there was still no response or even an acknowledgement. My blood was boiling but felt I was at a stalemate with no where else to turn. Or so I thought.......

I am quite active on Twitter. I use it to support the community and keep up to date with what is happening. I follow quite a lot of different people and organisations all of whom are supporting and championing the community. One was an account called NHS Improvement which had tweeted about 'professionally diverse teams being better equipped to meet the complex challenges facing the NHS' to which I responded copying in E&StH Trust.

This got picked up by another account for transgender staff in the NHS, Trans NHS Staff Network @TransNHS. They retweeted my tweet and included the E&StHTrust Chief Executive. Then everything happened so fast......

Whoever mans the Twitter feed for E&StH tweeted back stating that they were inclusive for patients and quoted that they had carried out 2 training sessions in December......... well this was a red rag to a bull! Now trying to make out the 2 'taster' training sessions I had facilitated were enough to tick the box and then take the credit for! I tweeted back and was quite blunt and told them 'how dare' they take credit for these sessions and explained how they had come about. They then private messaged me and said they would contact the relevant people on the Monday (this was Saturday).

In the meantime the Chief Executive (CE) tweeted me and asked me to private message the details of our situation which I did straight away. I was like a mad woman on a mission...... let me rephrase that; I was a mad woman on a mission.

Lucy was in the room with me when this all kicked off and she was laughing as I was getting animated about the responses and my fingers were on fire typing away responses on my phone. She sat there laughing saying 'if you need a cause fighting, give it to Avril'!

It was a manic hour of responses and more tweets. My tweets had been shared and liked numerous times. The CE came back to me and said that the length of time that has passed with little action by the trust was unacceptable and that this would get recified first thing Monday morning. He knew of the December taster sessions and said that he had received great feedback about them specifically from The Director of Communications and Patient Experience who he was passing everything over to manage. It was now being taken out of the hands of HR although they would still be involved

True to his word she contacted me Monday morning. Funnily enough I also received an email from the ED&I Manager at 7.30am saying all the points I had raised were valid and an apology for not responding sooner. Funny that!

The upshot is that in the next few days I am going in for a meeting with
The Director of Communications and Patient Experience to discuss the issues and following that there will be a meeting with Jo from See Change Happen which will be a planning meeting for both documentation and training. 

What I really want is for E&StH to become a centre of excellence for all things NHS trans; to be the trail blazer for getting it right and for best pratice being filtered to other NHS trusts. Why can't it be them? There are only a few NHS trusts who have trangender policies in place and there is no uniformity in the policies and therefore inconsistencies with how trans/NB patients are treated all over the country. Excellence has to come from somewhere and why not with my local NHS trust?! However to do this there needs to be enagagement and commitment from them in the first place.

Watch this space!