Day 228: Dates. Lack of Dates. Confusion. Lovely friends.

So I went for my appointment at Glenfield on Monday, which was my annual check up basically. It's approximately 4 weeks until I have surgery. It was all a bit odd to be honest.

I had my obs done by Karen, who is one of the Cardiac Liason Nurses, she was lovely and we talked a bit about what's going on and she said that she was going to try and get some more information on an approximate date for me. 

The appointment carried on as normal, Echo, ECG and then wait to see the consultant. Now, I know this is necessary for the number of patients they have to see each day, but having only met my consultant who I'm now under (it got changed about 18 months ago) once, at this time last year, I was a bit frustrated to be seeing the other person they have that sees half of the consultants appointments. I know they are still just as qualified and lovely people, but quite frankly, they are not my consultant and usually seems to be a different secondary person each time and the lack of continuity isn't helpful. 

I had to explain the fact they'd wanted to move my surgery forward a year and the fact they're now trying to fit it in the gap between finishing down here in Kent and starting back at Uni in October, for what felt like the millionth time. Surely my consultants should know what's going on?! I asked if I could just quickly see my Consultant again since I've only seen him once previously and the other Doctor kindly obliged and he came to see me.

In all honesty, it wasn't really worth it. Regardless of the fact that I'm having surgery in a months time, the whole thing was treated like there was nothing different to last year and that there wasn't really much to say to me. My consultant said that they had no control over the surgery and didn't even seem sure that I would be having it so soon, even though it was him who insisted last year that it couldn't wait a year. 

They then told me that they wanted Karen to speak to me again, turned out it was about dates, which she'd already talked to me about. She tried to ring the relevant person but they seemed to be out of the office, so she said that she'd email her and copy myself and my consultant into the email she sends. It still hasn't arrived.

I usually have such excellent service at Glenfield, but ever since being told I'm having surgery I've had the necessary appointments but it all seems so vague. I know that they can't tell me a date until much closer to the time, but I was still expecting to have a bit more of an idea what's going on.

I just want some clarity and to find out whether I'm ever going to have this bloody operation and if it will be at the time it should be. It already feels like I've put my whole life on hold and tried so hard to still plan things to enjoy this last Summer I have before entering the wide world of Being An Adult. I will be devastated if it all gets changed and moved yet again. I'm usually a very organised person and plan big things like this months in advance. I can't deal with not knowing what's going to happen.

Anyway, on a lighter note, my lovely friend Hayley has made a new sub-group of the charity Patches Hearts, which is aimed at adults, as there seems to be far less support and networking for adult CHD patients in comparison to children's support. If you are a CHD patient, go on Facebook and search for 'PATCHES- Bravehearts'.

Also, in a weird turn of events, a lovely school friend of mine Emily (who I knew had a CHD, we joked about the price of the schools insurance as they took BOTH of us away at once on a school trip to Germany) and I have been brought back into more regular contact as we both are now having surgery soon. We used to speak a lot before we went off to Uni, but never really talked much about our conditions after the initial conversation as our conditions had no effect on our lives at that point. We've both now had the our conditions brought back to the forefront of our lives and I'm really looking forward to seeing her when I move home for Summer. 

Take care, everyone! xxx

The 'Safe and Sustainable' review into Children's Heart Surgery was 'flawed'. Well who knew?

I'm not usually a hugely political person. I vote, yes and I try and keep a grasp on what's happening in the world, and that usually involves having some form of political knowledge. I'm not though, the kind of person that is severely right or left wing or that spouts huge political rants/ has active involvement in a political party. But sometimes, just sometimes I pay a bit more attention and as a CHD patient, the review into Children's Heart Surgery is one of those things.

I do believe that we need to make sure that all hospitals are providing the best quality care for their patients, and that there shouldn't be a difference in care dependent on what surgery you go to, and I know that is important for things to be sustainable for the future.

I guess I will always be slightly biased too, as I am a patient at one particular hospital, and naturally, the patients don't want it to be their hospital that has to cease practicing. But overall, the whole review, done by the JCPCT (which now doesn't even exist... yeah... hang in there all of you confused people) into 'Safe and Sustainable review of Children's Congenital Heart Services' was a bit of a farce. To say the least. Also, I don't count as a child patient anymore, so actually, the impact of this doesn't currently (as far as I know) have a direct impact on my own care anymore.

Public Consultations... that ignored the public
I went to the public consultations and feel that most people who got up to speak and ask questions/ make points (myself included) were ignored by the experts. They were very good stereo-typical politicians, that's for sure, but the problem is they weren't meant to be being politicians, they were meant to be experts and all they did was avoid questions, make up answers that didn't really link to what the speaker had said and ignoring people who asked questions that challenged their side of the story. The whole set up confused me too. They wanted to spend more time basically telling us what was going to happen in very complicated terms that a lot of people didn't understand, and didn't actually set aside much time to listen to the public. Excuse me for thinking that's what the whole point of a public consultation is. Overall I came away from both consultations feeling disappointed, ignored and almost like the decisions were already mostly decided, before they even spoke to the public.

I also feel that a lot of information was retained and not given to the public to look at. We weren't given much information to look at before getting to these consultations, and then were handed big packs of information upon arrival, with no time to read it beforehand to be able to see what we wanted to ask. It also wasn't easy to get hold of extra information that had been referred to, it was almost like the didn't want us to find it. 

Accessibility. 
One of the key issues regarding any average joe family when having to go through surgery is accessibility. Not only is it important for the child, it's important for the welfare of their family too. The type of care they want to consolidate is the kind of care that is the most stressful. The kind of care that makes the families more nervous than any other, the big scary operations. And they want families to be even further from their homes, and often other loved ones who are trying to offer them the care and support that they need. The support that can only come from people that know them and the family well. The people who offer the support at the hospitals are absolutely fantastic, from what I've experienced and heard, but unless you are unfortunate enough to have a child with a condition that involves them being in hospital for long periods, these people don't know you like your own friends and family. Although it would be a complete pain in the back side, ultimately if there was no other option I think families would prefer to travel further for the routine stuff than the big scary operations, as at least when travelling to the routine appointments, they are just that, routine. Going home at the end of the day type stuff, not the being in the hospital for 10 days or more after surgery stuff. (I'm not suggesting in any way people should travel further for routine things, just proving a point that the stuff they're wanting to make people travel further to is the more stressful parts that we don't want to have the added worry of long travelling distances piled on top.) They say that when the review is restarted accessibility will be given more priority, I just hope to god that's right.

Closure of Leeds and Leceister, really?
Here is the map showing where the current Children's CHD surgery centres are (nicked the photo from the IRP report, for those that want to know).

In the original proposals of the closures of surgeries, both 2 & 4 on that map were going to close. Now I'm sorry but it doesn't take a genius to imagine 2 & 4 didn't exist and think 'well that's a bloody lot of grey space with no hospital particularly close by'. 

ECMO 

They want to move it from Leicester to Birmingham. If that is the case, I'd really like someone to tell me the real cost involved of moving the facilities and retraining enough staff at Birmingham, combined with the cost of originally putting it in at Leicester and the training of the staff there. Let's see how 'sustainable' that looks when someone actually decides to answer that one.

Emergencies in the East of England (not as in East Anglia, East of the whole of England). It is widely know that a proportion of surgeries that are undertaken at these centres are emergency and not planned. I'd like to see how emergencies are going to be dealt with now, in places such as the Humber, Lincolnshire, Cambridgeshire, Norfolk etc if Leeds and Leicester are still both closed at the end of the new review.

Population Growth

Firstly, I'm going to harp on about the East/ East Midlands again (sorry Alder Hay, Bristol, GOSH, Brompton, Evelina, Freeman, Birmingham, Oxford and Southampton, you're all wonderful too!). The second and third biggest projected population increases are set to happen in the East Midlands (2nd) and the East (3rd). Just saying... Also, if we're expecting another population increase overall of 1.5 million 0-14 year olds across the country in a mere 15 years (according to the IRP report, projections are for 2010-2025), wouldn't it be sustainable to improve facilities across the 11 centres we currently have, as they would all be seeing an increase of procedures in the next 20-30 years. Instead of closing it to 7 and then having to open another one from scratch in 20 years time when the pressure on these 7 centres becomes too much. We are also seeing an increase of CHD in children, partly due to detection but partly because it may actually be on the increase. All of this will have an impact on these 7 new centres that are roughly being proposed, and I don't think it's exactly what you'd call a positive impact.

Finally, the cost of this whole process

What makes my blood boil more than anything is the fact that this process is going to have cost so so much money, and the longer it continues the longer it will continue to cost money. Down to the little things such as being provided with a brand new branded pen and notepad at both public consultations, for around 300 people at 11 locations, twice. That's around 6,600 new pens and note books, I know they bought in bulk, but still, was that really necessary? Then big things like all the legal fees that would have been paid when Save Our Surgery took the JCPCT to court. If they'd listened to us in the first place, they probably wouldn't have been taken to court. And paying all of these fancy consultants big wage packets to do... well not a lot in the end. To be quite honest, the money that's already been wasted is probably enough for you to have moved ECMO to Birmingham after all and go half way to retraining staff. Nice work.

Ultimately, this next point is for you Mr Jeremy Hunt. When this process is finally over, will you transparently admit how much it has cost the tax payer, will it be easy for people to find out? Somehow I think not.