I’ve not really known where to begin this blog post and so I have now stopped and started and edited and erased multiple times. It has been a bit of a strange month. I think February is always a bit of a uncertain month anyway; you finally stop accidentally writing 2017 on dates but 2018 still doesn’t sound quite right, while you’re fairly certain its not a leap year, you could be wrong, and so you remain a bit uncertain how many days are left this month, one minute its snowing and the next you notice spring flowers have appeared.
As often appears in my blog, there continues to be funding issues. While the NHS covers the whole of the UK, NHS Scotland is a separate health authority to NHS England which causes problems when you have to travel out of the health authority area for appointments and treatments. There are currently no autonomic specialist units in Scotland and so I am seen by a specialised unit in London (which is the leading and pretty much the only place with NHS places in the UK for Dysautonomia). Every time I need to be seen, have an appointment, have medication approved or tests this needs to be put in a report to NHS Highlands committee who decide whether or not it is worth funding. While my previous appointments have been funded (either straight away or through appeals), my test result appointment was turned down. This seemed really ridiculous as I had had the tests (which I couldn’t get anywhere else) and all I needed to get was the results from them, yet the committee refused this. My GP consequently attempted to get my results for me instead of me having an appointment with the consultant but the consultant refused this too and was adamant I needed to be told in person in an appointment. The first appeal after this was also turned down. Currently, because of major funding cut backs it seemed a decision was being made that all out of area appointments couldn’t happen. Eventually after evidence, lots of appealing the decisions and with one hour to spare before I lost my appointment slot, the committee agreed they would fund an appointment but only if it was carried out by telephone, with me remaining in Scotland to save money. Fortunately London also agreed to this compromise, but only as a one off exception.
My phone consultation took place last Thursday and was not an appointment with good news. I think when a consultant starts with telling you that they have one piece of good news, they are basically saying there is a lot of bad news. The good news is I have not gone into complete autonomic failure (which is very good as thats a terminal diagnosis and gives you about two years maximum). However I am experiencing intermittent failure and the majority of the tests they carried out back in November were positive. My tilt table, meal test, exercise test and 24 hour blood pressure and heart rate tape all came back positive. It confirmed I have POTS (which we knew anyway) and they’ve agreed I have some sort of hyper-mobility syndrome (which ties in with Marfan’s which is what my rheumatologist suspects). My anxiety test (which included the surprise mental arithmetic test) came back negative and showed that this does not have a psychological cause. None of this news was surprising as there had been enough hints at the time that these things were going to be positive. However the consultant is extremely concerned about my continued deterioration as well as my loss of ability to do a lot of things and what appears to be occasional limb paralysis. Consequently I’m being admitted to London as an inpatient urgently. In hospital there I have to undergo all the tests I had back in November (dreading this as I know what is coming this time), so they can see if things have changed. If they have they will then need to work out why. The plan is then that I will be admitted to rehabilitation where they will try and stop the decline and see if they can reverse anything. The consultant warned me with rehabilitation things will get worse before they get better, it will be very intensive and it will be difficult both for me physically and for them from a medical point of view. There is no guarantee it will work. After getting off the phone with the consultant she rang my G.P. and spoke to me again later in the afternoon, as did the GP. They want me to be admitted asap but as usual the problem is getting funding. My funding application went in last week and so now I have to wait and see what will happen.
Its been really hard to find information about rehabilitation for Dysautonomia in the UK. There is very little about it online or in support groups. What I have found is it is initially quite intensive (from anyway between 2 weeks- 4 months inpatient stay) with a multidisciplinary team. A huge component of it is physiotherapy and exercise which makes you feel terrible as it causes all your symptoms to flair however you have to keep on pushing it to improve your hearts stroke rate and volume. I will have to keep up the exercises daily for the rest of my life so I do not decline again, if it works. So far I’ve found only two people who’ve undergone it, both in their cases as outpatients. For both of them it has helped a bit and they are now able to tolerate sitting up better (though still rely on wheelchairs). I’m really hopeful it will work though extremely apprehensive too. While the news has not been good it has been helpful to finally feel like I’m starting to get more answers, an action plan and not just be passed to a different department. For now though I’m just waiting for the first hurdle to be crossed; the committee to approve funding.