1 00:00:00,000 --> 00:00:06,160 Hello everyone I hope you're all doing quite well and I will apologize now I'm 2 00:00:06,160 --> 00:00:11,520 actually releasing this episode a little bit early there is a reason for that 3 00:00:11,520 --> 00:00:19,080 it's quite quite a big reason I've alluded to a little bit in the last 4 00:00:19,080 --> 00:00:26,640 episode where I was talking with Lisa whereby I'm a little bit frustrated with 5 00:00:26,640 --> 00:00:33,560 how I feel I'm being treated or not treated as the fact may be so I wanted 6 00:00:33,560 --> 00:00:40,520 to get this episode out get it done so that I can start the new year hopefully 7 00:00:40,520 --> 00:00:45,040 a bit more positive I didn't want to put this episode out because this is gonna 8 00:00:45,040 --> 00:00:52,120 be a bit of a downer this is gonna be me being completely honest completely 9 00:00:52,120 --> 00:01:00,320 straight down the line with how I feel I'm sort of being left and as I said I 10 00:01:00,320 --> 00:01:05,120 wanted to get this out so the new year start fresh you can have chirping me 11 00:01:05,120 --> 00:01:10,320 back making jokes and whatever else and just explaining exactly what I've got 12 00:01:10,320 --> 00:01:15,600 going on but this this one I needed to get all this stuff off my chest I'm 13 00:01:15,600 --> 00:01:21,640 gonna be honest with you because since I had my lumbar puncture and I was told 14 00:01:21,640 --> 00:01:30,080 I've got an eight week wait for the results to come back I'm gonna be totally 15 00:01:30,080 --> 00:01:36,720 honest I've been struggling since I really have because I know I've 16 00:01:36,720 --> 00:01:44,040 mentioned it a few times about how I feel like I'm really deteriorating in 17 00:01:44,040 --> 00:01:51,360 recent times well you know what I'm getting to the point where I'm incredibly 18 00:01:51,360 --> 00:02:00,960 frustrated with the fact that no matter what is is being done it's always a 19 00:02:00,960 --> 00:02:08,200 massive long wait now under no circumstance do I think I am more 20 00:02:08,200 --> 00:02:14,680 important than anyone else I am absolutely not there's no thoughts in my 21 00:02:14,680 --> 00:02:21,360 head that I am but and I have to say this and I can only talk for myself I can't 22 00:02:21,360 --> 00:02:29,240 talk for other people when you've got someone that's potentially got a life 23 00:02:29,240 --> 00:02:44,160 changing medical condition why does it take so long to one diagnose and two to 24 00:02:44,160 --> 00:02:49,720 arrange treatment that might give that person a slightly better quality of life 25 00:02:49,720 --> 00:02:54,240 now give me a second I'm just gonna have a quick sip of my cup of tea and then 26 00:02:54,240 --> 00:03:04,760 I'll go into a bit more detail okay right so going into a bit more detail 27 00:03:04,760 --> 00:03:12,520 and you will hear I think from my voice in this episode I'm I'm not much erpy 28 00:03:12,520 --> 00:03:19,240 self I'm trying to be but I'm not gonna be and I will apologize if I get a 29 00:03:19,240 --> 00:03:27,320 little bit emotional during things I'm gonna say today but I've got to get them 30 00:03:27,320 --> 00:03:31,960 off my chest I really have because I am adamant absolutely positive there's 31 00:03:31,960 --> 00:03:35,800 people out there going through exactly what I'm going through if not they're 32 00:03:35,800 --> 00:03:43,480 worse and you know what there needs to be a bit of a voice being heard by 33 00:03:43,480 --> 00:03:53,040 those that are able to make changes because I'm gonna speak for myself you 34 00:03:53,040 --> 00:03:57,280 know you go back to the end of February where I was told by my GP off the back 35 00:03:57,280 --> 00:04:07,080 of private MRI scans that actually expect the diagnosis of multiple 36 00:04:07,080 --> 00:04:15,800 sclerosis that's back end of February we're now right at the end of December 37 00:04:15,800 --> 00:04:23,440 I've probably had my diagnosis maybe three months that's a long way in itself 38 00:04:23,440 --> 00:04:27,920 now again I understand there's all sorts of tests and everything else that have 39 00:04:27,920 --> 00:04:36,200 to be done why do they take so long why do these tests have to take so long you 40 00:04:36,200 --> 00:04:42,040 suspect people of having like I say I'm gonna use the term life-changing medical 41 00:04:42,040 --> 00:04:48,440 condition don't make them wait don't make them wait too long because making 42 00:04:48,440 --> 00:04:55,120 people wait actually it's gonna make things worse for them now I've always 43 00:04:55,120 --> 00:05:00,920 been a very positive person do you know what I'm not that positive at the moment 44 00:05:00,920 --> 00:05:06,640 I'm really not I went and had this lumber puncher I was told it's gonna be 45 00:05:06,640 --> 00:05:14,560 an eight-week wait for the results now speaking for myself all I can say to 46 00:05:14,560 --> 00:05:21,200 that is over the last few months I have deteriorated massively I've gone from 47 00:05:21,200 --> 00:05:26,800 being able to walk to work which is probably about a mile and a half give 48 00:05:26,800 --> 00:05:36,040 or take to having to use a mobility scooter to get to and from work it used 49 00:05:36,040 --> 00:05:43,360 to take me maybe 25 30 minutes to walk to my workplace it got to the point it 50 00:05:43,360 --> 00:05:48,800 was taking me over an hour clearly there's an issue that doesn't happen for 51 00:05:48,800 --> 00:05:53,320 no reason and that was me really fighting myself and to be honest with 52 00:05:53,320 --> 00:05:58,640 you're struggling not to fall over it's got worse since then it's got a lot 53 00:05:58,640 --> 00:06:09,920 worse since then so in that instance and where things are being made so much more 54 00:06:09,920 --> 00:06:16,440 difficult why am I being made to wait so long to get a treatment that let's be 55 00:06:16,440 --> 00:06:22,040 honest I fully respect the fact that the treatment itself all it can do is slow 56 00:06:22,040 --> 00:06:29,440 things down get that it's not gonna turn back time that's fine I fully respect 57 00:06:29,440 --> 00:06:36,160 that but what I don't respect is making me wait all of this time for that 58 00:06:36,160 --> 00:06:43,240 treatment that is gonna keep me probably where I am now but yet I'm being made to 59 00:06:43,240 --> 00:06:52,760 get worse before I can get to the point whereby I can then stay at a level now 60 00:06:52,760 --> 00:06:56,920 yeah I do get this is coming out very negative do you know what for once I've 61 00:06:56,920 --> 00:07:01,320 got to do it I've got to get this stuff out I've got to get off my chest I'm 62 00:07:01,320 --> 00:07:08,840 incredibly frustrated and annoyed with the fact that the MS MDT the 63 00:07:08,840 --> 00:07:15,440 multidisciplinary team made the decision for me to have to have the lumber 64 00:07:15,440 --> 00:07:23,120 puncture even though the diagnosis of MS has already been made now they went 65 00:07:23,120 --> 00:07:31,600 through my scans allegedly and they said from their point of view there was one 66 00:07:31,600 --> 00:07:39,720 scan at one lesion on my spine and multiple on my brain right in front of 67 00:07:39,720 --> 00:07:49,560 me I have got letters from my consultant my neurologist stating and I'm actually 68 00:07:49,560 --> 00:07:58,160 gonna read to you what this actually states okay thank you for enclosing the 69 00:07:58,160 --> 00:08:08,040 report this which shows at least two intrinsic spinal cord lesions one at the 70 00:08:08,040 --> 00:08:20,160 C7T1 level and one in the lower thoracic cord that's at least at least two 71 00:08:20,160 --> 00:08:28,120 spinal cord lesions why is that MS MDT only saying this one this is a letter 72 00:08:28,120 --> 00:08:35,480 actually from my neurologist who has seen the scan reports I'm also going to 73 00:08:35,480 --> 00:08:45,520 read another report that was given by the private MRI company who done the 74 00:08:45,520 --> 00:08:50,640 scan so give me a second I've just got a paperwork in front of me that I'm gonna 75 00:08:50,640 --> 00:09:00,480 read from and it states here there is intrinsic cord lesion seen at C7T1 76 00:09:00,480 --> 00:09:09,240 level with some swelling of the cord next part there is another intrinsic 77 00:09:09,240 --> 00:09:17,200 cord lesion seen at the lower thoracic cord so that's two people looking at 78 00:09:17,200 --> 00:09:22,080 them scan saying actually there's two on my spine why does that MBT unit only say 79 00:09:22,080 --> 00:09:28,520 there's one I'm sorry I am very frustrated with all of this and I don't 80 00:09:28,520 --> 00:09:36,800 understand how they can come up with that finding when there is two people 81 00:09:36,800 --> 00:09:47,280 looking at the scans and making it clear there's two lesions now the MS MDT unit 82 00:09:47,280 --> 00:09:53,400 it seems to be a very secretive thing and I'm gonna say that it seems to be 83 00:09:53,400 --> 00:09:57,400 very secretive because I actually requested to attend the hearing that 84 00:09:57,400 --> 00:10:03,080 they were doing I was told no you're not allowed they go through everything and 85 00:10:03,080 --> 00:10:13,040 they make their decisions now going back to my neurologist he's wording after my 86 00:10:13,040 --> 00:10:20,360 MRI brain scan on the 20th of June stating I'm writing with the results of 87 00:10:20,360 --> 00:10:27,280 your MRI brain scan from the 20th of June this does show a few tiny white 88 00:10:27,280 --> 00:10:37,160 matter hyperintensities around the ventricles of your brain so I have two 89 00:10:37,160 --> 00:10:49,440 spinal cord lesions at least and a few lesions on my brain why does that MS MDT 90 00:10:49,440 --> 00:10:58,880 unit think it's okay to allow me to deteriorate without treatment purely 91 00:10:58,880 --> 00:11:03,440 just across some T's and dots of my eyes as I said the other day when I was 92 00:11:03,440 --> 00:11:11,340 talking with Lisa on the last podcast the system's got to change that's not 93 00:11:11,340 --> 00:11:19,420 fair now again I'm gonna read something that my neurologist wrote on the 15th 94 00:11:19,420 --> 00:11:27,480 of the 10th of this year and this is going off the base of my brain and 95 00:11:27,480 --> 00:11:33,680 cervical spine scan so they didn't scan the thoracic where there's a lesion they 96 00:11:33,680 --> 00:11:41,320 scan the brain and the cervical spine looking at the scans myself I think that 97 00:11:41,320 --> 00:11:47,480 the area of high signal in the cervical spinal cord does look more pronounced 98 00:11:47,480 --> 00:11:54,560 and this may account for his deteriorating symptoms I will try to 99 00:11:54,560 --> 00:12:02,200 make sure that his case is discussed at the MS MDT to consider disease modifying 100 00:12:02,200 --> 00:12:11,920 treatment as soon as possible that's from my neurologist so why when it went 101 00:12:11,920 --> 00:12:20,680 to the MS MDT unit that they think is okay to make the decision to force me 102 00:12:20,680 --> 00:12:26,920 to wait even longer I don't want much I really don't want much I just want 103 00:12:26,920 --> 00:12:31,880 treatment and yeah I totally understand it's never gonna make me better I get 104 00:12:31,880 --> 00:12:36,760 that that's fine I've come to terms with that well I've not come to terms with 105 00:12:36,760 --> 00:12:41,680 is the fact that the system is broken I'm not the only one there is other 106 00:12:41,680 --> 00:12:45,480 people out there that I can guarantee are going through the same thing that I 107 00:12:45,480 --> 00:12:52,560 am and we're being made to wait why are we being made to wait just to tease 108 00:12:52,560 --> 00:12:58,280 across the night's a dotted no no no that's wrong that's very very wrong now 109 00:12:58,280 --> 00:13:03,280 please don't take this as me having an attack and anyone within the NHS it 110 00:13:03,280 --> 00:13:09,120 isn't the NHS do a fantastic job they work incredibly hard they keep people 111 00:13:09,120 --> 00:13:18,160 safe they save lives they are fantastic but the system the system is broken the 112 00:13:18,160 --> 00:13:23,000 system needs readdressing and it needs readdressing soon because there are 113 00:13:23,000 --> 00:13:30,280 people out there that are being left to get worse with whatever condition just 114 00:13:30,280 --> 00:13:36,800 so they can tick boxes on a sheet and not actually continue doing what needs 115 00:13:36,800 --> 00:13:44,880 to be done yeah that sounds harsh I get that but this is my opinion this is me 116 00:13:44,880 --> 00:13:52,240 saying what I am going through I don't accept that I can't accept that there is 117 00:13:52,240 --> 00:13:59,440 things that need to be done to keep people healthy safe and well now I'll be 118 00:13:59,440 --> 00:14:04,000 totally straight making people wait like they do like they're way making me wait 119 00:14:04,000 --> 00:14:08,800 there's a mental health aspect of that as well they're not knowing I'm gonna be 120 00:14:08,800 --> 00:14:13,600 totally honest I sat there with Lisa the other night and I'm getting to the point 121 00:14:13,600 --> 00:14:20,880 I literally said to her in the new year I think I should write a will I shouldn't 122 00:14:20,880 --> 00:14:28,080 have to think that I genuinely shouldn't have to think that not when there is a 123 00:14:28,080 --> 00:14:36,920 treatment there that can kind of slow the roll try and get me to a point where 124 00:14:36,920 --> 00:14:44,640 I stay where I am for a bit because at the moment like I said previously I'm 125 00:14:44,640 --> 00:14:53,040 falling off a cliff I really am and it's not nice it really isn't nice I'm having 126 00:14:53,040 --> 00:14:58,920 to find different ways of walking moving or and everything else which is okay I 127 00:14:58,920 --> 00:15:03,680 get that that's part of the condition I totally get that nobody wants this 128 00:15:03,680 --> 00:15:12,680 condition nobody likes this condition absolutely fine but at the same time why 129 00:15:12,680 --> 00:15:19,880 are people being made to wait to get the treatment that will just slow things 130 00:15:19,880 --> 00:15:25,400 down and try and give a better quality of life for that that period that the 131 00:15:25,400 --> 00:15:33,440 treatments gonna work I'm not a scientist I don't work for the NHS you 132 00:15:33,440 --> 00:15:38,040 know I've got no I'm a first aid I think that's as good as it gets I'm a first 133 00:15:38,040 --> 00:15:45,440 aid I've been for a very long time so I am in no way able to make big comments 134 00:15:45,440 --> 00:15:50,440 on how things should change and whatever else but like I say making people wait 135 00:15:50,440 --> 00:15:54,600 for treatments that are just gonna give them a better quality of life it's wrong 136 00:15:54,600 --> 00:16:02,240 it's very very wrong and it's got to change and now I don't have the answers 137 00:16:02,240 --> 00:16:06,920 on how it's gonna change I've said that and I'm just literally getting my 138 00:16:06,920 --> 00:16:10,760 thoughts out there as to what I'm currently going through but you know 139 00:16:10,760 --> 00:16:14,760 what I need to do that and if there's anyone else out there going through the 140 00:16:14,760 --> 00:16:23,080 same my heart goes out to you it really does because this is absolutely awful 141 00:16:23,080 --> 00:16:34,440 and all I can say is stay strong stay strong keep fighting because maybe one 142 00:16:34,440 --> 00:16:39,960 day things will change for the better and these long waits these unnecessary 143 00:16:39,960 --> 00:16:47,160 long waits will stop that that's all I can hope for and yeah fingers crossed 144 00:16:47,160 --> 00:16:53,640 that's that's how it goes believe me this I've agonized over this this podcast 145 00:16:53,640 --> 00:16:59,680 I've really agonized over it because like I say I will say again the NHS are 146 00:16:59,680 --> 00:17:05,720 incredible they do a fantastic job but actually there's things that have got to 147 00:17:05,720 --> 00:17:13,240 change there really is things that have got to change now as I say I wanted to 148 00:17:13,240 --> 00:17:18,840 get this one out I wanted to get this one done starting new year I will be 149 00:17:18,840 --> 00:17:25,160 back to doing my positive podcasts where I'm talking a lot better but like I say 150 00:17:25,160 --> 00:17:30,080 I had to get this off my chest genuinely I hope you all have a fantastic new year 151 00:17:30,080 --> 00:17:37,000 and I hope the new year brings lots of positivity to everyone I know it isn't 152 00:17:37,000 --> 00:17:44,200 always going to but I hope you get whatever positivity you need thank you 153 00:17:44,200 --> 00:17:48,200 all for listening and I do appreciate this has not been an easy listen for 154 00:17:48,200 --> 00:17:51,800 anyone it's not been easy for me to actually sit and record this one but you 155 00:17:51,800 --> 00:17:58,120 know what I've had to thank you very much have a great new year and I'll speak 156 00:17:58,120 --> 00:18:01,640 to you soon bye bye