Monday, 6 October 2014

Care issues

I have been receiving support since October 2009, this was originally 1.5hrs with  Second Step and 1.5hrs with National Autistic Society.  Over the years as my disability worsened I required more and more hours, I had to drop Second Step and now I'm up to 17hrs a week with the National Autistic Society.

Recently there has been a change in the rules requiring the NAS to provide everybody support times same every week.  This doesn't work if the client needs to go somewhere at a different time for whatever reason such as medical appointments that they have no control over the time it is.  If the person needs a different time they have to get permission to have it changed from the council.  Just utterly ridiculous.  For example I would like to attend a Trans group in Taunton, so I had to ring social services to pass on a message that I would like to get permission because 1) group is out of area, 2) It's not during my usual support times, 3) it's in the evening and 4) it's more than my usual hours for a Saturday.  Previously they would shift it around so I took the extra hours from another session.  Now they are a lot less flexible than before because of all the rule changes.  I used to have a autism specific social worker but now the new ones no longer case hold so this request will go through to the adult social work team who have never met me before for a review.  All this just to be able to go to one group.

The other new thing they are introducing is a phone clocking in and out system.  So the support workers will have to clock in and out using my home phone to do it.  Another pointless waste of time.  It's like they want to make it as difficult as possible to change anything or do anything.

I'm lucky to be getting any support at all as the only reason I get support is because of the autism act. Without that I would be getting nothing.  I'm not getting it because of my physical disabilities.

Wednesday, 24 September 2014

On dental surgery...

So for the last 17 years of my life I have been having frequent dislocations of my jaw to the point that I don't even count any more.  Well today I finally saw the maxillofacial surgeon at the Bristol Dental Hospital.  I arrived at about 15mins early and then the clinician was running nearly an hour late.  This is not unusual in a busy clinic, I should really have taken something to do while I waited, something to think about next time.

The surgeon I saw was a very nice chap and asked how long I'd been having the jaw dislocations, how often and can I get them back in myself.  For me luckily I can get it back in myself whereas some of his other patients are frequent A&E visitors, I avoid the hospital as much as possible.

I'd had an X-ray the last time I attended the dental hospital so he'd taken a look at that and said that my jaw joint was an abnormal shape.  He wanted me to go for a CT before a decision could be made about which surgery I was going to have.  It was nice to know at he'd had another patient with EDS who had surgery with him and came through ot well.   I mentioned to him when he'd asked if I'd had any other surgery about my top surgery and it turns out he'd worked at Charing Cross in the past and knew of the GIC team there, I swear most of my specialists have done a stint at Cahring Cross.

All in all it was a short but productive appointment.  I should receive a letter in the post about the next appointment and one for the CT scan too.  They are hoping to do the surgery once I've recovered from the lower surgery.  As it has already waited 17 years I'm sure a little while longer isn't going to do too much damage.

Friday, 8 August 2014

HMSA Residential 2014

During the weekend of the 25th-27th July 2014 I attended the HMSA residential at the Hilton Hotel at St George's Park, Burton on Trent.  This was my third HMSA residential that I had attended, the first two being at another venue.  This was the first time it had been at this venue.

I traveled up to Burton on Trent on the train from Bristol Parkway.  From the start there were little things that made the journey a little more complicated.  I arrived at the train station with a support worker to find that the lift that you need to take to get to the platform was broken, my support worker had to get someone to help us and we had to cross the tracks to get to the platform.  This is the first time this has happened at this station and I was glad that I had support to help me communicate with the train people.

When the train finally arrived about 10 minutes late the assistance people helped me on the train to find that the wheelchair space was full of luggage, despite there being about 4 signs saying that there should be no luggage in the space.  The assistance person had to then move all the luggage so I could get into the space.  The wheelchair space itself was incredibly small, it must be the smallest they could get away with legally.  I could only just squeeze my powerchair into the space.  On other trains I have been able to get it in the space and have extra room for the tilt! The design of this space was incredibly bad because not only was it tiny but it was situated opposite the luggage rack which was equally tiny.  This meant that there was more luggage than there was space so people were blocking the aisle and the door with all the luggage.

About halfway through my journey on the train I needed the toilet, not an unreasonable thing to expect to be able to get to the toilet right?! Well first I needed to get the luggage in front of the door moved out of the way then there was a very narrow corridor that I had to go through, swing my chair around and get it into the toilet.  There wasn't enough room to swing around easily and there were people sitting on the floor in the corridor blocking access to the toilet.  It would have been easier if the wheelchair space was on the end of the next carriage as I would then have only needed to get through the door and into the toilet rather than having to navigate the corridor as well, much easier.  I think this wouldn't have been too bad had I have been in a manual chair but doing it in a powerchair was next to impossible.

When I finally arrived at Burton on Trent I waited around for a little while for my taxi.  The taxi driver then brought out a ramp which was in two parts and was incredibly difficult to get my powerchair on. When we got to the venue it took three people to get my chair off the taxi because of the unsuitable ramp.  It required the wheels being in just the right place and trying to do that backwards is very difficult.  I only just got it on let alone getting it off.  My friend MJ gave me a card for another taxi company as I wasn't going to risk having that situation happen going back to the station and having nobody to help!

The venue was incredibly fancy and was a massive step up from the previous venue.  It was nice and open, light and airy.  My room was very nice and comfortable and I had a wheelchair accessible bathroom.  I couldn't have been happier with it and felt that it was very good value for money.  In the evening of the first night I figured out that I had managed to leave my phone charger at home, but luckily MJ lent me his the next day so I could charge my phone.

On the Saturday there was a timetable of talks that were very informative and I even managed to talk to my consultant from Stanmore about some problems that I have been having with regards to gastro stuff.  The thing that I really like about the HMSA residential is that they have talks from the leading experts in hypermobility syndromes and the associated conditions, and that the speakers often take time to talk to people individually outside of their speaking session.  It is great that they are so committed to helping people with hypermobility syndromes as we often come against resistance or aren't believed about our symptoms.  It's really nice to be in a place where other people understand what you are going through.

At the meals I did try a few things but all times I ended up rushing to my room and throwing it all back up so that possibly wasn't the best of ideas.  The evening meal was a three course meal, and it all smelled so wonderful that I really wanted to try some of it.  The people who were bringing the meals out got rather confused as the people with special diets weren't all told what they were supposed to be eating or what was safe.  This meant that it took quite a long time to get meals.  My dessert took so long that most people had already had their coffee by the time I got mine, as an apology I got given two puddings! Some didn't receive theirs at all, I only got mine because I kept asking for it when someone came around.  There were problems at the meals where people could help themselves as there were people taking food from the special food table that didn't have any special dietary requirements, which meant there was less for those people who did have those requirements.  That has happened at all three residentials I have been to.  As soon as I ate I felt really incredibly hot, there was one person on our table that was freezing the whole meal whereas I was just melting.  Amy lent me her fan that she had and that really helped me cool down, I really should invest in a cool vest but I just don't have the money at the moment, maybe some time in the future!

In the evening after the meal there was a party.  I wasn't really well enough to attend that but I stayed around long enough to see one of the volunteers had dressed up as a minion which was very cool! I think the wobbly wheelers were there again too doing a dance but I couldn't see very well from where I was sitting.  It was really nice seeing people have such a fun time on the dance floor. I even won a small prize from the raffle for the picture, I got a tiger one and I was glad that I won something as I don't usually win things so that made me smile.

On the Sunday I was starting to feel quite ill, probably from overdoing things and from trying to eat when I shouldn't have. A nice person saw that I was feeling quite ill and lent me one of their ice packs that did help me for a short time. I ended up going to the talks, having my lunch which then made me ill.  Luckily I managed to get an earlier taxi and an earlier train back home.  The railway staff at Burton on Trent train station were very helpful and got me on an earlier train even though I had a non transferrable ticket because I really did feel very ill.  The journey home was rather exhausting and I really needed to use the tilt on my chair but because of the restricted space described above I wasn't able to.  When I finally got home I was rather broken, exhausted but happy.  I spent the next few days just resting and smiling about all the happy times that I'd had over the weekend.

All in all I had a fantastic weekend.  I managed to buy a present for Emily from my friend Jo's stall, and some new child size wrist bands from Hannah on her stickman communications stall.  I would highly recommend it to anybody who is newly diagnosed or are trying to get a diagnosis, having all those experts in one place and all the highly knowledgeable people with the condition is so incredibly helpful.  I always come away learning a lot from the weekend.  I am really looking forward to the next residential already!

Thursday, 7 August 2014

Gastrointestinal woes

 So for the last few months I have not been able to eat solid food and have been relying on Fortisip drinks to get the majority of the my calorie intake.  People who know me know that I have been trying to lose weight but this isn't a healthy way to do it.  Every time I eat solids I either throw it up or get really bad tachycardia, excessive sweating, stomach pain, nausea and other unpleasant symptoms.  The amount of apathy I have come across from medical professionals has been staggering, because I am still overweight they aren't overly concerned about the fact that I'm losing weight so rapidly and can't eat. I'm overweight still so therefore it really can't be all that bad!

In the time that my stomach issues have been playing up I have lost nearly 3 stone. Usually these flare ups only last a month or so but this has been going on a lot longer than usual which is worrying me. My GP originally tried to refer me to the neurogastroenterologist (what a mouthful that is!) at the Royal London Hospital but they are currently not taking referrals and I had been discharged from their care a couple of years ago.  Although I hadn't found them to be all that helpful before anyway, yes they got me on meds but their attitude was if I had another flare up that I should "manage it realistically", I'm not entirely sure what they meant by that.  Either way none of my previous flare ups had been this bad or for this long.

The second referral went to the wrong person, I ended up seeing an upper gastroenterologist at Southmead hospital who specialises in bariatric surgery, not really what I needed! There wasn't really much she could do for me so she recommended that I see a gastroenterologist. It went wrong somewhere in the choose and book system because the request was actually for the gastroenterology department but somehow that got changed to upper gastro surgery department instead.  It obviously was a waste of my time, energy and the upper gastro surgeon's as well.

So I then had to go back to my GP this time referring me to another local gastroenterologist who I found out specialises in Chrohns disease, again not really what I needed.  At least she ordered some tests that were relevant.  The Chrohns specialist gastroenterologist referred me on for a barium swallow which was rather disgusting and I haven't had the results from that so I'm not too sure the outcome of that yet. For those who don't know about the barium swallow you have to swallow this chalky sweet substance and they take pictures in the xray to see if things are getting stuck in the esophagus. I had been having swallowing problems for a while and my pills had been sticking around in my throat for hours.  So hopefully it showed something, although knowing my luck it will all come back clear.  Her usual course of treatment for what is highly suspected to be gastroparesis I am already on the maximum of all the medication that she would usually have prescribed, that doesn't bode well when your stomach is too full to complete an endoscopy 16hrs after last eating, whilst on the maximum dosage of the medication that is supposed to help.  I was told that my next options are tube feeding of some description which obviously is a last resort option.  She said she was happy for me to be referred on to a specialist in London who may be in the position to help me more than her.  She gave me a slip of paper to go to reception for an appointment in 6 months time but admitted that there weren't any appointments available in the next 6 months! So what I was supposed to do with my weight dropping like crazy for the next 6 months I'm not sure.

I had been in touch with a few friends on Facebook who recommended that I see the gastroenterologist at UCHL as they had seen her and said that she was good.  I phoned this specialist and was told that the waiting list was only 2 months and that they could get me in sooner if it was urgent.  I thought great! So I took the name, phone number and other vital details to my GP and their response was incredibly underwhelming.  They were very reluctant to refer on to the specialist in London because I was under the care of the local "specialist".  They had to really make sure that this was the right person this time because of the three previous failed referrals.  I had to do a lot of hand holding and persuading to finally get them to do the referral to UCHL.  It was only when I mentioned that I had ran in to Dr Cohen (Pain Specialist and Rheumatologist from RNOH Stanmore) at the HMSA conference, that Dr Cohen said that I would lose my place on my rehab course that I'm supposed to be going to at the end of August if I couldn't get my calories up that she finally yielded and sorted the referral.

I am now waiting to hear back from UCHL.  I explained the importance of getting this sorted ASAP as I'm losing a lot of weight and the above rehab course reason.  It has gone to the consultant but hasn't been input into the computer system yet so the secretary couldn't update me with what is happening.  The consultant was on leave last week and is now working through the backlog so I'm really hoping to hear from them in the near future.  This would have been pretty stressful for anybody but having the extra anxiety that being on the autistic spectrum brings means that the last few months have been very stressful.

It's countdown until Stanmore, only 19 days to go.  I wish this flare up would resolve itself because I've been waiting 16 months to get on this course! I really hope that I can see them soon!I will update you all when I hear anything more from UCHL.

Wednesday, 16 April 2014

Chest surgery and transition : Updated 08/08/14

In December 2004 I came out as trans and so began the long old process of transitioning. 2005 I saw a local psychiatrist in Brighton that referred me to the gender clinic in London.  They also tried to diagnose me with borderline personality disorder but that's a post for another day.  Unfortunately due to moving area I had to go through the whole process again and was finally seen in 2007.

2008 I had my first surgery in Cheltenham with Mr Bristol.  I thought he was going to do the double incision technique that most knowledgeable surgeons do on people who were the size I was.  This turned into a series of three operations, each time I was told that this would be the last time! I got so fed up in the end that I decided to go with another surgeon, this brings us to the end of last year.

After some people on a Facebook group had told me that I should seek a second opinion I finally did towards the end of 2013.  Once the gender clinic had sorted the referral it was January.  I had talked to Ginny Mr Yelland's secretary on the phone, she was very helpful and we managed to book in the consultation, pre-op and operation all at once.

The consultation was at the beginning of March at the Nuffield Health Brighton hospital.  It is a private hospital but I was there as an NHS patient.  The staff there were very friendly and there was free hot drinks and wifi.  The consultation went very well, Mr Yelland could see that I was unhappy with things as they were and how he could help.  We talked about the operation and what I could expect out of it, the risks and such.
A week before the operation I was at the hospital again for the pre-op.  I saw Mr Yelland again to talk it through and then I had to go for some testing.  Due to my EDS and POTS they did and ECG just to make sure everything was ok, and some blood tests too.  They had to shave a lot of patches of hair so they could stick the pads on but they were stubborn and didn't want to stay stuck!!  I presume that everything came back ok as I was able to go ahead with the surgery.

The day before the surgery we drove down to Brighton and stayed at the Hickstead Travelodge, this was the closest hotel that we could find that had disabled rooms, free parking and a reasonable price.  The morning of the surgery we had to be in the hospital for 7:15am. I wasn't allowed to eat anything after midnight and Liz the nurse recommended that I wake up about 5:30am to have a last glass of water and then nothing after 6am.  She said that would help me to not have a headache after the surgery.

We left the hotel at about 6:15am to make sure we got there in plenty of time.  We arrived probably a bit too early but we got taken up to my room anyway.  One of the many perks of having it in a private hospital is that you get your own room, I was also able to control my own medication which was great because some are very time dependent.  At about 8am Mr Yelland came around and drew on me with his marker pen that smelled of cherry.  At around 9am I was ready and went down for surgery at about 9:30ish.  The last thing I remember is talking to the anesthetist about my crummy veins while they were trying to find them, I vaguely remember them finding it, but not much after that.

A couple of hours later I was in my room again with a drip and my chest bound up with the dressings.  It was very nice to not have drains this time around, trying to go to the toilet when you have drains is a nuisance, always worried you are going to catch on them.   The nursing staff were great and came very quickly whenever I pressed the call button.  I didn't have a great deal of post-op pain so I didn't take that many painkillers just a little codeine and paracetamol as I'm sensitive to most strong painkillers.

By dinner time I was ready for food, I'd ordered the pork as it was gluten free.  It was amazing, hospital food usually isn't this good but I really enjoyed it.  My partner had some too so it wasn't just me being very hungry, the food really was good.

The next morning I was seen by Mr Yelland and he was happy for me to be discharged from the hospital.  We went back to the hotel for another night and then drove back to Bristol the next day.  I used a pillow between my chest and the seatbelt this made it a lot more comfortable for the drive home.

Two weeks later I went back to the hospital to get the dressings taken off, I am rather hairy so this was painful as it was really stuck on to my chest and it took a lot of hair off with it! I was completely amazed by how great my chest looked, I knew that Mr Yelland gets great results but at the back of my mind I was worrying as I'd had 3 surgeries already and wasn't happy so was worried that I wouldn't be happy this time.  My fears were unfounded it looked fantastic, I couldn't be more happy.  The treatment of the staff, the surgeon and everyone has been great from start to finish.  I would highly recommend this surgeon.  Nearly 10 years since starting transition I've finally got a chest that I'm really happy with!

Now for the pictures, well done for reading this far if you have!

Result from 3 surgeries with Mr Bristol in Cheltenham, front

Side view arms up

Side view 2 arms up

Side view arms down

All marked up before the surgery

2 days post op

2 days post op

At post-op appointment just after dressings were removed. 

2 weeks post op front

2 weeks post op right

2 weeks post op left

August Update:  I am including updated photos in this post rather than writing out a whole new post just to put a few pictures up.  So here are the new pictures 4 months post op and nearly 3 stone down in weight.

Wednesday, 26 February 2014

Stanmore 2014

On Monday 24th February I had my yearly catch up appointment with Dr Cohen.  It has been just over two years since my last rehab stay at Stanmore.  We've made a lot of progress in that time, I now have a powerchair which I hopefully soon will be allowed to use outdoors, I'm just waiting for an assessment to make sure I'm safe to use it outdoors. Things have been adapted in our flat so that makes things a bit easier around the flat.  We have power assisted doors into the building and into the flat, so I just have to press a key fob and the doors open, well when they work they do anyway! Last year we had an adapted kitchen put in, suited to my needs this makes using the kitchen in the wheelchair much easier.

Dr Cohen is really friendly and approachable, willing to listen and has a lot of helpful suggestions.  We had a chat and she is going to refer me to a bladder specialist at UCHL a urogynaecologist and I really need to get that looked at before I have any lower surgery (metoidioplasty).  She said seeing as I have a rectocele and a hiatus hernia that chances are that I probably have a cystocele/prolapsed bladder too.  I've had bladder problems for years, so it's good that it will finally be looked into.  My GP says it is probably stress incontinence but being someone in their late 20s it's kind of embarrassing having to wear pads and worry that you are going to wet yourself if you sneeze, cough, move too vigorously or can't get to the toilet in time.  

We also spoke about my swallowing troubles and she said that I need to get back to see someone from professor Aziz's team as they are the people who diagnosed the dysphagia.  It was only quite mild the last time that I saw them but this was a few years ago and it has got a lot worse since then.  Eating just really hurts and I often choke on food, drink sometimes even my own saliva.  

I spoke to Dr Cohen about my jaw problems, this is something that I've been having a lot of trouble with for at least the last 15-17 years.  Unfortunately Dr Cohen said that there really aren't any dentists in the UK that specialise in EDS.  There was one person that she could find that would be willing to work with patients with EDS and he is based in London, I don't remember the name but I will get it in my report from Dr Cohen.  The best placed service to help though is the community dental team as they are for people with needs above and beyond what a normal dentist would be able to cope with.  The problem is I've been trying to get referred to our local community dental team for a while now, Bristol Dental hospital tried to refer me but screwed up the paperwork and I was told that I didn't qualify for their service.  They said to get my regular dentist to refer me but they wouldn't do it unless I went in for another consultation, this wouldn't be a problem but they aren't wheelchair accessible.  They claimed to be wheelchair accessible but that would only be true if you were to have treatment in the waiting room.  The building was accessible but the treatment rooms aren't, the last appointment I was in my manual chair and I hoisted myself up the step and then my wife lifted the chair up, we could barely get in the treatment room though as it was so cramped.  So I'm hoping that we can sort something out soon as that was ridiculous.  

We talked about my second stay at Stanmore on the rehab ward.  This time it would be 2 weeks instead of 3.  I had been in contact with the lady who books it in as I had been given a date but it was only a few weeks after I am having surgery so it was a bit too soon as the course is so intense.  We are aiming for some time in mid June, that would give me 8 weeks to recover from surgery before going on the rehab course.  Just need to wait to hear back about that.  

All in all I felt that the appointment went well and although there is still a lot of stuff to work on we are making progress.  It isn't so much about curing as making life manageable with the right aids, appliances, pacing etc.  I'm next due to see her in another year, but I will probably run into her while I'm staying in June.