NHS Equality, Diversity and Inclusion Manager meeting

Yesterday I had an appointment with the Equality, Diversity and Inclusion Manager at our local NHS trust. This was the trust where Lucy encountered what seemed to be a self appointed ‘sex change’ expert (head paramedic and his 'expert' terminology) who gave Lucy no choice in the ward she would be admitted to and broke so many regulations under the Data Protection, Equality and the Gender Recognition Acts.

After Lucy’s experience, my first course of action was to contact PALS and request a copy of their transgender policy. I wanted to see what this document contained and then compare our experience to what had been documented. I was surprised to find that there was no policy in place at all however they referred me to the Equality, Diversity and Inclusion Manager, Mr A, who suggested a meeting to discuss our experiences but also to be involved with the creation of a policy.

Lucy was supposed to be coming too but for her this issue is now in the past and she is more prepared to let things slide. My view is that if Lucy was ever ill again, this would be the hospital that she would end up in so I wanted to safeguard her but also anyone else from the community that may have need of this particular NHS trust services (there are two local hospitals under this Trust). Lucy certainly isn’t the only one from the community living in the surrounding area.

Mr A had been extremely friendly on the phone and via email but I still wasn’t sure what to expect. I didn’t know much about his experience or what he may be expecting from me so I had a quick look at his LinkedIn profile (very useful!) and could see that he has been involved with this sort of policy before. In order to prepare, I scoured the internet for various other NHS Trusts transgender policies which I printed off to take with me. There were four fairly recent ones and although the basic content was the same the best and most comprehensive was for South London and Maudsley NHS Trust. I went through them all and highlighted all the areas that were relevant to our experience. To be honest I was shocked when I realised how many regulations had been breached by the paramedic, I just hadn’t realised. I also prepared a list of useful organisations and websites and printed and highlighted the relevant part of my blog post as that explained the situation perfectly; all I added was the paramedics name.

I arrived for the meeting and Mr A greeted me at the door. Again he was very friendly and amicable and I think we both felt really at ease with each other which made conversation easy. 

I started by telling him a bit about us and went over the experience that we had been through and he took lots of notes. I reiterated that the actual medical care that Lucy had received, especially as it was near to Christmas and the NHS was getting slated in the press about waiting times, was not up for dispute and that we were very happy with the medical care she had received. All the staff from the receptionist through to the nursing staff and consultants had not batted an eye at our situation and although some may have struggled with pronouns they had tried and all been respectful and made us both feel as comfortable as we could be under the circumstances. All the issues that we had were created by this ‘expert’ and we struggled to see why he had even been required to speak to us as the conversation regarding wards and beds could have been had with any of the staff we had already encountered. He asked me if we knew had instructed him to come to speak to us but we didn’t know.

We also discussed about Lucy being placed on a male ward with no choice and the open conversations the paramedic had with the ward staff and the subsequent open nursing team meeting that was had discussing Lucy. I also told him that we had a real lack of male clothing at home but as she had been admitted to a male ward I had been out and bought suitable male clothes and accessories as she didn’t want to draw any attention to her situation as she was in an open male ward. He was appalled that we had felt the need to do this. He said we were accommodating them where they should have been them accommodating Lucy and that they had failed her terribly. There should have been a way to accommodate her in a female ward either in a private room or in a corner of a ward with curtains. He also understood that her bathroom needs would have been different to the other patients on the male ward and that she had to pick her time when she went into the shared facilities as she had to shave facially at least once day and there was all the other personal care too which meant she would have been using the facilities far longer than anyone else.

He said that he was very concerned and the first thing he would need to ensure is that the paramedic is not used for this purpose again as he was in breach of so many legal requirements. He thanked me for trying to resolve the issue in this way rather than making a straight forward complaint. I said that for us it was not about screaming and shouting and we were not even necessarily after an apology but we wanted to ensure that procedures and processes are changed so this does not continue or happen again to someone else. He will raise this with the complaints team so that the ‘incident’ can be logged and investigated properly but following on from this a formal transgender policy will need to be created, not just for transgender patients/users of the NHS services but a comprehensive all encompassing policy that also caters for transgendered staff. To do this he wanted to work with us and as part of this process would like us to come in and chat to staff about our experiences as he said that it is one thing having a policy and training people but sometimes listening to real life examples with how it made us feel can make it more real and bring the message home better.

We went through some of the NHS transgender policies I had printed and I had not only highlighted parts relevant to us but also parts of the policies which I felt were key to any new policy. He was suitably impressed and said that I had done much of the background work for him as this would have been the first thing he would have done. He had previously been in touch with GIRES in a previous role so has touch points with them. Obviously as well as a policy, he considers staff training and engagement as key. For this I got the opportunity to recommend a friend of ours who has her own transgender consultancy, SEE Change Happen, and he was very interested in using her and I was able to pass her details on.

This is no instant fix and the creation of any new policy and training will take time, let alone one that needs to encompass so many legal requirements. This will be work in progress for some time and I am excited to be part of this process as there is an opportunity to educate and make change for the better.

Trans Radio UK

As you know, Lucy is a DJ which she has been doing for some 25 years or more. Music is very key in our house and there is usually someone playing music or singing (our daughter M is an amazing piano player and singer).

A few years back Lucy hosted a non-league radio station she created while she was managing a football team which did contain music as well as the expected football information etc. It was very popular and was something she really enjoyed doing.

So for sometime she has been toying with the idea of creating a Trans Radio Station where all the DJ's would be trans/non binary but also would be a place for people to also advertise their trans related services.

Two weeks ago she started setting up the radio station, Trans Radio UK and she has set up a Facebook page for it too, www.facebook.com/transradiouk. She was presented with lots of challenges to get it working which have been resolved at some considerable expense by her purchasing some new equipment (I think in some cases it was just an excuse to update some of the gear she already had!). She never does things by halves and she turned up with a variety of microphones she had bought as the microphones she uses for her usual DJing were apparently not good enough, some probably more impressive in style rather than function!

She did a call out amongst our friends to supply a logo for the station. Jess Smile, one of our friends who is a great artist supplied her with a fab picture which is being used. Thanks Jess :)

After a LOT of swearing and threats to give it all up, the radio station is up live and has been for nearly a week. Already there are lots of listeners from around the world and we have been amazed at the locations as so far it has only been shared to our friends. We have several businesses which will be advertising on the station (for free of course however it does cost £10 if they need her to create the advert) and there are guest DJ spots available, so don't hesitate to contact her via the Facebook page if you are interested.

There is music playing 24/7 and live broadcasts in between all that at specific times. The feedback from everyone so far has been really positive. The intention is to play various genre of tunes to cater for everyone. The first guest spot is Ruby Fury tonight 8-9pm (UK time) so come along, like the Facebook page and tune in.

Update: 19/04/2018
We now have new logos

Butlins and life

Blimey, life has been so hectic recently what with Lucy's heart issues, our first grandchild arriving, GIC appointments, work being manic, Pinks (as always) to name but a few.

Yes, we became grandparents for the first time on 28th January to a lovely little boy called Arthur thanks to my eldest son and his wife. He is totally gorgeous and his nannies Avril and Lucy adore him dearly.

Lucy had her second operation end of January and is now on the road to recovery. She is still getting out of breath and using the GTN spray but she is miles better than she was. She has had to pull out of a 10k run she was planning on doing in April and I think she will have to do the same for the half marathon that she is due to run in May. I think it is highly unlikely she will be able to do this as she is not even fit enough to get back to refereeing yet let alone training for and then running/walking a half marathon.

The staff at the hospital for the second operation were great with Lucy and were very understanding. They made a couple of little slip ups but nothing major. She felt relaxed enough that she showed them pictures of us out and about and they were incredibly complimentary and friendly.

All the health issues means that Lucy being out to one and all has stalled. Our plans were for her to tell everyone by end of Jan 2018 but we had to concentrate on her health first and didn't want to be worrying about fall out from anything else. So now it looks like we will tell everyone who doesn't know by the end of May, just before we go away on holiday to Cyprus for 8 days. This gives time for her health to improve and for us to concentrate in getting everything ready for 'go-live' day. I'm still surprised people have not picked up the signs, they really are there for all to see if only they really saw the person in front of them. The only person who has made any comment is my mum who has now mentioned several times how much 'he' looks like a woman! She still thinks she is being derogatory but doesn't realise how complimentary she is being!

Obviously not being able to referee is costing us financially but also this was the main source of fitness for Lucy where she would be running more than 20km a week. It also means that by the time she gets back to refereeing she will be fully out so there are all sorts of other issues associated with that. We need to have conversations with the FA not just to protect her but also a plan of how they are going to assign matches to her. She is quite high ranking for male football (she referees woman's football too but these games are lower and won't be affected) and she believes she will lose her ranking when she is full time..... this shouldn't be the case as that would be discrimination. In any case these are things that need to be addressed.

For the end of February we had planned a trip to Butlins Minehead with our friends Jennie and Ethan and actually this came at a good time for us as we needed the break away and Lucy was well enough to go. We had never been to Butlins before and went to Pontins with the kids 4 years ago and we hated it - dirty, horrid accommodation and rubbish entertainment, so we didn't know what it would be like. Lucy was also nervous as we would be in an environment with lots of families as it was a family weekend and half term and didn't know what to expect.

First impressions were great. The staff were really friendly and the accommodation was simple but clean and not tired or worn. The entertainment was amazing and the whole place was huge but clean and well kept. We paid to have the premium food and the food and the restaurant was lovely. The first night we didn't sleep much as the mattress was awful and we we went to guest services the next day and the mattress was replaced with a brand new one with 40 minutes! No quibble. How amazing is that! We went 10 pin bowling most days and just enjoyed meandering around.

We had a great time. Despite there being hundreds of families staying (it holds 9,000 people) only one little girl looked at Lucy all wide eyed and watched her as she walked.... it was an amusing moment. None of the other children didn't even notice her. A chap was coming down some stairs as we were walking up and he just couldn't help but stare openly so much so he nearly fell over. There were a couple of adults who stared at us but once I started staring right back at them they would eventually look uncomfortable and look away embarrassed that they had been noticed. All bar one of the hundreds of staff there came over as transphobic. This barman kept calling Lucy 'mate' and was just downright rude. I went over and he served me and was friendly and polite and didn't call me mate so we knew 'mate' wasn't a term he used generally. On the last evening Lucy confronted him and he was very defensive saying he called everyone 'mate' but we knew this was a lie. In any case, we had his name from the bar receipt and have raised a complaint against him. On the last day as we were preparing to leave a group of builders who were working on site walked past us and then all fell about laughing. Although they are not Butlins employees their company is employed by Butlins so we mentioned it on the feedback form.

There was one woman though who needs a special mention as for us she wins the idiot of the year award. We were playing crazy golf with Jennie and Ethan and had reached the 10th hole waiting for the 2 women and 1 child ahead of us. The older woman (in her late 40's) turned round and looked at us and said to Lucy "are you an honorary woman for the day?" WTF??!!! Lucy was wearing leggings and a tunic top, Ugg boots, fitted jacket, casual daytime make up, and had her usual hair. What on earth made Lucy look like she had been dressed up for the day??!! Once we got over the shock (we were seriously gobsmacked) I turned round and said she is a woman, a woman every day! Well I'm not sure if she felt embarrassed or not, her friend did, but she turned round and continued her game and when finished ushered her son and friend away telling him to move on to let these 'ladies' finish their game. As with all things, you think of a billion other things you should have said, "are you an honorary idiot for the day" but this did upset Lucy and it was on her mind for the rest of the break away. I kept telling Lucy just to forget it as it was said in ignorance however in my heart there was nothing that should have made this woman say this so I understand why Lucy was so bothered. Let's hope this woman has learnt by this experience. 

However we had such a great time that we are now booked to go back for an adult 80's weekend in November which also includes a fancy dress Halloween ball and again we have booked for 3 days in December between Christmas and New Year and are taking our youngest daughter M, Jennie and Ethan and their 6 kids will be going and now my eldest son, wife and their new son are also coming too. Can't wait!

Last week Lucy had her first GIC pre-op appointment. We saw the person we saw before, Vanessa Crawford. She is so lovely and we both feel very relaxed chatting with her. We updated her on Lucy's heart issues and medication and she has allayed our fears that it may hinder surgery. She has confirmed that Lucy will still be able to have surgery but just they need to be a little more careful with her. The appointment was really relaxed and went really well. She was horrified at the way Lucy was treated (as a transgender person) at the first hospital and mentioned that Dr Barrett would be more than happy to write to the NHS Trust but we said we felt we had it all in hand (more about this later). Lucy was told to think about whether she wanted her surgery at London or at Brighton and which surgeon she would prefer. There is no guarantee that you will get your surgeon of choice however there is a strong possibility you will. Apparently once referred the waiting time for surgery at London is 4 months and Brighton 6-8 months however the Brighton timeline is deceasing. We didn't have to make a decision there and then but we did indicate we would prefer London. From this you can tell she had no hesitation in giving 1st approval for surgery. The next appointment for 2nd approval is not until Jan 2019 with Gurleen Bhatia and as long as we get her approval Lucy could have her surgery as early as April/May 2019. Exciting! This also falls in line with our plan for a marriage blessing October 2020.

Straight after this appointment Lucy had her first voice coaching assessment session. Following this she will get 4 personal sessions and 8 group sessions. This was very interesting and despite Lucy laughing at some of the exercises she now has some exercises she needs to keep practising. The therapist was really good. I am glad I was there as I know what she should be doing and keep nagging her to practice! There is lots of humming going on in our house at the moment.

Last week she also had a scan on her thyroid due to the overactive thyroid she now has. Because of this she will need to see a local hospital endocrinologist so that could be an interesting discussion bearing in mind her situation. The scan went well although it did take the radiographer a few moments to realise I was not the patient. 

As for her treatment during her heart issues I contacted the trust PALS and without giving any details of any issue I asked them to provide me with a copy of their transgender patient care policy. After a week they came back and said that they don't have one and included another chap on the email and invited us to come in and be involved in the production of one. I responded that of course we would, however at this point in time Lucy had not had her second surgery and requested that they leave it a couple of weeks until Lucy was back on her feet. Well I did not hear anything for over a month so sent them another email:

This is a serious issue and Lucy's treatment (non surgical) contravenes The Equality Act 2010 and as there is no policy in place the presumption is that all treatment of transgender patients under the trust are more than likely contravening the Act.

Funnily enough I received a phone call within 5 minutes of sending the email. We are now liaising to get a mutually agreeable date for us to go in to discuss. Watch this space.

A broken heart...... a long story

Don’t panic! My heart is not broken…… This is a catch up on why there has been such a long gap in between my posts. It has all been a manic and emotionally draining time hence no posts.

I last wrote about chest pains that Lucy was getting which seemed to have been attributed to the change to hormone tablets. Lucy didn't get on well with the gel so reverted back to patches but these pains didn’t go away and increased in intensity and frequency to a point where over a 3 week period she was having 5 a day. The pain affected both her arms and made her hands feel so weak she couldn’t pick anything up and she was just getting so breathless just walking short distances. Reading back what I’m writing it all seems so obvious but our GP didn’t think so!

Four trips to the GP ensued (and a game of football which she refereed) where they seemed to be baffled even though her maternal grand parents had a history of heart problems and her mum had a heart attack at 50 (Lucy is only 46) and now suffers with angina so all this was disclosed. On one visit, it was a locum who said it was unlikely to be heart related and Lucy was diagnosed with acid reflux and given the relevant prescription. At one point our usual GP did a blood test and organised a heart check up with the nurse who did height, weight, diet, exercise and took results from the blood test, good and bad cholesterol levels (which were great) etc and gave Lucy a 1.8% risk of a heart attack.

In the meantime the pains still continued and I was getting more and more worried about her as she was looking really poorly. She wouldn’t let me take her to the hospital and booked another appointment on 21^st December with the GP. I know Google is dangerous for looking up symptoms and self-diagnosis however she had all the symptoms of unstable angina so she went armed with this information. The GP didn’t seem too interested in anything she took and seemed unsure what the issue was however when he took Lucy’s blood pressure she had a pain attack where her pulse and blood pressure went off the scale and he was immediately on the phone to the hospital to get Lucy into A&E. I rushed home from work and took her straight to the hospital.

She had a wait in A&E but luckily nowhere near as bad as has been recently printed in the press and blood was taken, she had a chest x-ray and an ECG both of which were ‘normal’ however the ECG only shows your heart as it is at the time of the test and unless anything has happened that permanently affects your heart, it doesn’t necessarily show if you have had a heart attack. Lucy also has an Apple watch and as she wears this loads it recorded all the times she was in pain and showed the effect on her pulse and blood pressure. This was great to be able to show the consultant this data so there was evidence of the attacks - how clever and who would have known how useful this watch would have been! 

The nurses struggled and kept misgendering her but to be honest we just wanted her checked over. The consultant was great, didn't misgender her once, and moved Lucy into a private room in A&E where he checked for asthma as well which was negative. One lot of blood tests where they were checking for infection came back clear so he came and sat with us and said he was waiting for one more set of blood results to come back. If they were negative he would let her go home but book her in to the cardiac clinic so they could do 24 hour monitoring and hopefully find out the cause of the pain.

The final blood test was for a cardiac enzyme called Troponin which indicates damage to the heart muscle. The level of Troponin indicates the level and potentially number of heart attacks and the consultant explained that based on Lucy’s level she had been having numerous heart attacks over the previous 3 weeks, more than likely each time she had experienced chest pain, and that she would have to be kept in as it was too dangerous to send her home. It was estimated that at this point she had probably had 40 attacks, morbidly amusing that she had probably had 30 at the point the GP nurse gave her the 1.8% risk score and a further 10 or so after!

It was a long wait for a bed in a ward. While we were waiting a head paramedic came into the room, introduced himself and loudly pronounced

that he had been appointed (we think he is some sort of self appointed ‘expert’) to come and speak to us and he has in his words…. dealt with many sex change people and non binary people, male to female, female to male….  And that he was “the only one that can deal with people like her”. This chap was in your face and so loud and just kept going on and on about his own ‘sex change expertise’ and that he was there to discuss the ward situation. Lucy had to put him right on his terminology and said that he obviously meant ‘transgendered’ not sex change. To be honest we were shocked at his attitude as although the nursing staff may have misgendered Lucy on and off, none of them had had any issues in discussing the situation with us so we didn’t see the need for him to be there as we would have been comfortable having the conversation with the staff we had already met. He told us that we had no choice of ward and that as Lucy was pre-op and still had ‘her bits’ that she would have to go to a male ward just like it would be if she was sent to prison she would be in a male prison. I kid you not! This was the comparison and conversation! There was no mention about her other body changes due to hormones. To be honest we were both reeling from what he had said and how he had said it (bearing in mind Lucy was also seriously unwell) and when we expressed concern about her being on a male ward (this wouldn’t have been our first choice) with a female name above her bed all he said was that we could come up with a nickname she could use instead! Well the only nickname I have for Lucy is ‘babe’ and don’t think that would look great on a male ward so we came up with something derived from our surname to be used but that is not what Lucy is known as! At no point was any other bed option or individual room discussed – we were not given any choice.

It wasn’t until much later Lucy was moved to the ward and unfortunately the same paramedic guy moved her and when they arrived  announced in a loud voice that he needed to speak to the ward sister where he loudly explained Lucy’s situation which could have been overheard by anyone. She then loudly called a meeting of all the nursing staff and again indiscreetly related Lucy’s circumstances. Luckily this ward was full of deaf old men or every word would have been heard. Poor Lucy was cringing.

She was put in a bed next to the window with the chosen nickname on the board by her bed. The nursing staff tried but they kept misgendering her (probably as she was on a male ward) and one of the old men in the bed opposite Lucy chatted with another patient about he was sure it was a woman in the bed opposite and commented on how long Lucy’s hair was. As you can imagine Lucy didn’t feel particularly comfortable and I had to bring in the handful of male-ish clothes she still has as we just didn’t want to draw any further attention to her.

They did further blood tests (having problems in getting any blood out each time) which still showed the Troponin level as very high. The cardiac consultant said that she needed an angiogram but they also were certain that she would definitely need stents which could be done at the same time however this particular hospital couldn’t do the stents so she would need to be moved to one of 2 hospitals with the speciality to do this. No point putting her through the same procedure twice when they thought they knew what needed to be done. Neither of the 2 hospitals are particularly local to us (furthest was 25 miles away however that one is in the road next to where I work). In the meantime they moved her to a proper cardiac ward….. male of course! They were waiting for a bed to become free at either of the other hospitals and they said there was one patient in more need ahead of Lucy but it should be soon. Unfortunately days came and went, I was up the hospital every day spending time with Lucy, balancing life at home, doing her washing everyday (limited ‘male’ clothing) and making sure she had everything she needed but she still wasn’t moved and Christmas Day was looming.

We asked one set of nursing staff if there was any chance Lucy could come home for a few hours on Christmas day. They didn’t think there would be too much of a problem as she was now on all sorts of medication and although still getting attacks they were less frequent and less intense. They said that they would need to speak to a cardiac consultant and let her know. Christmas Day came and Lucy had a Christmas Dinner at lunchtime before we got there. Yum!

I went to the hospital with our daughter and took some presents, Christmas hats, tinsel, games and bottle of Bucks Fizz. We had to make the best of a horrid situation. We again asked the nursing staff on duty if she could come home for a few hours and they said that they couldn’t let her go without a cardiac consultant’s agreement and that was never going to happen as none of them would be available until 27^th Dec due to staff absences. Lucy was gutted as you can imagine however we had no choice and I wanted her to be safe but we did feel the previous staff should have just said no rather than raise our hopes. I couldn’t take all her presents up to her as they are all girlie however I did take up Lola the Lion which was a large cuddly stuffed toy she had been eyeing up when we had gone Christmas shopping and I had gone back and bought. Lucy loved her and she became her hospital mascot and was with her all the time.

This was a completely frustrating and draining time. The Christmas period came and went and we made the best of it under the circumstances. We were both worried….. what if there was a big attack just waiting round the corner, how bad was the damage to her heart (we wouldn’t know until she had the angiogram), the surgery carried a risk of further heart attacks and stroke…. what if she died……. The emotional impact on us both was huge and I missed her so much not being at home. In 17 years together we have not spent much time apart and if you know Lucy, she is a larger than life character so left a huge hole in our home life as well as an empty side of the bed. Despite all the misgendering one of the nurses was very friendly and had asked Lucy some questions so Lucy showed her photos of us out and about. She was very complimentary.

Eventually Lucy was moved on the evening of 27^th Dec over to the hospital next to my work with a view to them operating the following day. She was blue-lighted over in an ambulance and arrived in the cardiac ward, male of course, with Lucy written on the board above her bed…… she got that changed before anyone noticed and the nickname was back. The misgendering continued but by this time we were just shrugging it off. In the morning I popped in before work to see her. She was quite distressed as they had tried 5 times to get a cannula in her arm but they had been struggling and due to the continual blood tests her arms looked like bruised pin cushions and her tummy was just as bad as they were giving her a blood thinning injection every day. She was scared about the operation, I was scared for her too but managed to hold it together until I had left her….. so many tears had been shed by us both…….

Eventually on the 6th attempt the cannula was in but she did not get taken down for surgery until late in the afternoon. When I turned up to see her she was still not back so waited so I could be there for her. About 45 minutes later she was wheeled back. It had all been done with a small amount of sedation she was able to watch it all on a screen. What was amazing was that all of this had been carried out via a 5mm cut on her right wrist where they had fed a wire (and stents) up into the arteries of the heart. Bloody amazing! She had 2 stents put in 1 artery however needs to go back in 4 weeks (25^th Jan) for another stent in another artery which they did not do at the time. While I was there they came and did an echo (heart scan) which was amazing and I could see all the valves of her heart and watch her heart pumping away.

A nurse came and said that there was a possibility that she could go home later that evening once the cardiac consultant had given the okay. Well that was the news we wanted to hear and I was back at 8.30pm to bring her home.

The day after she come home we had our Christmas dinner. Not the same as having a Christmas Dinner on Christmas Day but made sure she had everything and all the trimmings. 

She is also on so much medication I have bought her a tablet box so she knows what she is taken and when. Trying to make it as easy as possible.

I would like to say she is out of pain and feeling better but at the moment she is still getting pains every day but generally only once a day and no where near as bad as before. She has a GNT spray that stops them developing into anything else but is still very breathless and not sleeping well despite taking sleeping tablets. We are looking forward to 25^th January where hopefully the final stent will resolve these issues however any recovery goes back to day 1.

It is hard to tell if all this has been caused by her being on HRT, is genetic or is just one of those things. She came off the patches while she was in hospital but is back using them again now. I just want her to get back to full health.

And yes, we are going to raise the subject of how to treat a transgender patient with the hospital involved......