TIM SMITH HEALTH STATEMENT 2018.
Oh, you lovely people.
Hello, hello hello.
Ok, let’s get right to it.
It’s been a long time, far too long a time, since you’ve all had any type of real news regarding that Tim Smith whom you all love and cherish so, I know. There are many reasons for this, which may, I hope, become apparent as I lay this all-of-a-sudden news blast out for you now.
The time has come to be a little more candid and informative about Tim’s current situation and quite how he has landed in it, at the end of a long nine years adrift on this sea of uncertainty and stagnant circling eddies that lead nowhere fast.
Most of you are now familiar with the ins and outs of what happened all that time ago during the summer of 2008. But for the sake of clarity, which here and there has drifted a little, let me just state it here for the record.
Tim was indeed felled by a full cardiac arrest (which differs from a heart attack in that the heart stops beating completely) which in turn led to hypoxic brain damage to the parts of his brain that are largely associated with the starting and stopping of all movement. It left him with a little known about condition called dystonia. That’s it. There were no further heart attacks or strokes it turns out and there is no true paralysis.
Hypoxia simply means a lack of oxygen to the brain. It causes the cells to die or be damaged in the affected area just as any form of stroke does, be it a bleed or a blockage. Deprived of blood flow, or too much of it and in the wrong places, the result is the same.
It’s pretty rare to end up with this particular condition as a result of hypoxic brain injury. We know of maybe two other cases worldwide. If there are more, it’s still, in all likelihood, a very small number. But you might say that’s just typical of Tim: it’s in his nature to do things others don’t and to do them properly!
As we know, this condition has affected Tim’s movement as a whole, his dexterity, his ability to speak and it has added painful muscle tone and spasms that are a permanent feature of his life these days. These also hamper movement generally. Obviously all medical and surgical options to ease some of his suffering have been, and continue to be, investigated.
When I meandered into Tim’s world about five years ago, with a hopeful view to offer some form of help, things had ground to a halt (from a rehabilitation and treatment point of view) at the facility he was sent to specifically for that kind of support. This was for the most part, down to the financial struggles at the facility, which changed from a small family run brain injury hospital/rehab centre of excellence, to a large corporate firm. Unfortunately, this did nothing to improve things from a therapeutic standpoint and in order to make the place ‘financially viable’, many of the therapists, resources and available treatments were stripped back to the bone. Tim as an NHS patient, faired no better or worse than those paying to be there.
Add to that the fact that during his six month wait to be found a bed there, which he spent languishing (not by choice) in a nearby hospital, he lost yet more physical control to his condition which, by it’s nature, forms very bad and painful habits all of its own if left unchallenged.
It’s fair to say, that like far too many people in Tim’s situation, he has been failed by a chronically struggling system. There will be many reasons for this and really we’re not as focused on pointing the finger of blame as we are on trying to carve out a path from where we find ourselves now. We began with seeking out some second opinions and attempts to get balls rolling that had seemingly been dropped. Tim, like many others, fell through the cracks of a waning system. I began to look at what was happening at the more cutting edge of physiotherapy techniques and treatment options as a whole. Your generous and wonderful financial input has paid for Tim to see a good few private specialists alongside some of the best the NHS has to offer in order to gain as broad a perspective as we could.
Overall, one thing was, for the most part, agreed upon. And here’s our raft of hope: there is potential for improvement that has remained untapped and has been made more challenging to achieve by the lack of input in those precious initial six months after his accident. The dwindling support that followed when he did finally receive some therapies was too little and too late.
So, let’s be clear: Tim’s condition is complex and in no way easy to tackle; it is not too well understood or easy to predict. No one can know for certain how much progress he can make but the evidence points to the fact that he can make progress. That he responds in a positive and, at times, rapid manner to the input he receives is a very positive sign that improvements to his life can be made.
Once we had finally been forced to accept (through many meetings and over the table battles with the decision makers at his facility) that the therapeutic help couldn’t be provided by them, your shiny pennies paid to pull in that much needed help from outside the hospital. While the facility continued to meet his day to day care needs, we did our best to contract appropriate therapists with specialism in neurological rehabilitation.
Logistically though, although we tried our best, we soon discovered that it was impossible to provide enough in this ad hoc way. Even if we had an endless budget, there just isn’t enough help within private agencies to provide the proper multi-disciplinary team-led regime that Tim needs on a daily basis.
It did at least serve to demonstrate to us, through those few sessions that he had with a wonderful neurorehab physiotherapist amongst others, that Tim had more capability than anyone had really helped him to realise before. Plus, there were other places he could go to that do still have the facilities and staff to provide him with the consistency of input that is so essential to progress of any kind.
It all comes down to funding. Currently, there is a battle going on to convince those that hold the purse strings that Tim is deserving of the chance to get the rehabilitation that could improve things for him. The hoops to be jumped within the system are numerous to say the least; even if Tim were to jump them all with ease, flaming though they may be and 50 foot high, it is STILL no guarantee of funding whatsoever.
As we understand things, potential for improvements or not, the CCG’s don’t have the funds to pay for ALL the cases that need it. This is of course wrong on so many levels but is the reality. They’re forced to make difficult decisions as to who gets a chance at recovery in any form. If we can get all the right evidence to prove he’s still capable, he may be chosen. Plus, once a patient has fallen off that rehab pathway, for whatever reason, it’s not at all easy to be accepted back onto it.
As such, the chips are somewhat stacked against us.
This whole process is one of evidence gathering and constant lobbying and nagging, but the competition is great, and it all takes a very long time with no guarantees at the end of it all. This has been the battle ground for the best part of ten years. Needless to say, funding issues as a whole affect how well these establishments function even before personal funding needs come into play. We see evidence of their struggle on a daily basis which obviously impacts on Tim despite the hard work of the carers to ensure his well being. It’s not perfect. It could, of course, be a lot worse.
Here’s our feeling about it all. Tim has waited too long. Nearly a decade wasted in waiting for something that should have happened right at the start. And, as such, we have realised that while the official process crawls slowly forward – and not without our constant prodding – we would be foolish to rely upon it or wait any longer for a positive outcome.
Now, suddenly, serendipity has paid us a long overdue visit. She has from time to time (in small but nevertheless crazy and amazing ways) shown us favour, but this one blows those welcomed gentle gestures right out of the sea! We may, I stress, MAY have found our Morpheus Miracle Maker as the very facility in which Tim resides falls with some relief into the hands of the director of one of the aforementioned places of wonder that we were considering as Tim’s new ‘home from home’. And what a reputation for greatness they bring with them! They have indeed it’s fair to say, worked miracles for people for many years. Now that we find ourselves under the same protective wing, it could well be the game changer Tim so needs, and indeed, all the other patients who find themselves similarly stalled. Being partly charity funded, they are able to offer more than they could were they reliant entirely on government funding. And their dedication and enthusiasm knows no bounds.
However, we have to raise the initial funds ourselves. It may be that if we were to raise enough to see Tim through the initial 3 months of ongoing assessment and therapies and if he were able to demonstrate his potential for some improvement in that time, the CCG may be more inclined to continue funding thereafter IF experts deem that he can move forward. This is yet to be fully clarified on both counts. The sum we need to raise is £40K. Do you think we can do it?
The only real way of getting an idea of what Tim may be able to achieve IS TO ALLOW HIM TO TRY. We want to give him that chance as soon as possible. None of us are getting any younger! All Tim wants at the end of the day, like anyone would, is to be able to go home. A greater functionality would help to make that more possible and would also mean a better quality of life once he got there.
Not only do we need to raise funds for Tim’s rehabilitation BUT WE ALSO WISH TO RAISE AWARENESS OF ALL THOSE PATIENTS AND THEIR LOVED ONES WHO MAY FIND THEMSELVES SIMILARLY STUCK IN A BROKEN INSTITUTION OF THIS KIND. Those who will most likely live out the rest of their lives in a similar and possibly preventable limbo when there is likely more that they could achieve (at the very least a better quality of life).
For too long there hasn’t been anything to tell because Tim himself wanted there to be something better to say. But he agreed that it is time to open up about his condition and his aspirations out of a love and appreciation for all of your love and support as much as anything else. To show you that it’s all counted; none of it has been wasted. It still means as much to him and all of us as it ever did. It’s kept us afloat on this long journey towards something better. Thank you doesn’t really cover it but as ever it is HEARTFELT.
We will keep you better informed of this journey: a new journey we hope; a new beginning!
More to come on all of this soon. But for now, please know we love you.
Love love love,
Sarah, Tim and Jim xxxx
In December, we were pitched a shocking curve ball. Tim lost the funding that secures his placement at his current facility. Thanks to recent changes in CHC (Continued Health Care) funding parameters, Tim was nudged out of the running and although the tab was supposed to be picked up by Social Care at his local council, they are now refusing to pay the bill as well. Each funding body is claiming that the other is responsible; no one wants to take it on. The council would like to downgrade Tim’s care costs by placing him in a cheaper nursing home as a means to cut the costs.
Obviously, this puts us in a very difficult position. It would mean that Tim would lose out on the long LONG awaited golden opportunity to receive some real and potentially life-changing input, as outlined above. He would receive no such support in a nursing home; nowhere near it. This would put paid to any hope of positive changes in his life and would make it impossible to move forward in any way. It would be a devastating move for Tim, who is well-loved in his current facility and cared for by people who understand him well. To move him now would be traumatic and senseless.
Needless to say, we are going to do everything to fight this decision and try to get his CHC funding reinstated. Failing that, we MAY be able to negotiate with the council to pay towards the shortfall between an average nursing home fee in his area and his current costs. But this all remains to be seen: it’s an unorthodox approach, if it’s even possible at all.
This makes our funding campaign that much more pressing especially in the short term. We must find a way to afford to keep Tim where he is so that he can be there for the help that promises to come; help that he, like anyone with his condition, deserves, and has waited an unacceptable amount of time for already. In this respect, the timing of this bombshell couldn’t be worse.
We hope that this comprehensive public statement about Tim’s health (and the press campaign that will follow it) will force the powers that be to reassess their decision. We are digging our heels in firmly and doing everything we can to reverse this awful move and to protect Tim from the crushing consequences of it.