Sometimes feel like I am going around in circles and getting no where.
The to do list isn't working !
I sometimes wonder if I just put too much pressure on myself , but recently I have got up and am either too tired to think or my head is spilling in a million different directions .
I started off with 3 nice books which had the titles of Tyler's Trust , Together for Tyler and House.
The idea was that I wrote down what I had to do for each, it hasn't worked !!! I seem to just have created more and more work for myself. So how to make it more achievable , for one I have started to ask for the help that people have offered me .
Over the weekend I had reached the point where I ignored the phone, hid my mobile and refused to turn my laptop on. It was only when my son said that he had really needed to get hold of me that I realised this couldn't go on.
So the plan, I need to be able to identify who is calling to avoid the cold calls, also not to hide my mobile or put it on silent and ask that things that can wait until Monday do . I need to make the time for my family and friends before they stop bothering to try and call. I am also missing out on what is going on in their lives which is a real shame.
Today I have actually managed to clear my emails and it feels amazing . Some of them made me quite cross but the feeling was amazing when I could delete them.
I was quite hurt when one of our support people told us by email that they were stopping their support . This was completely unexpected and I genuinely don't know why as I thought the support was ongoing for some time . We were referred to a new programme of potential support being run by brain tumour uk, however this is the programme that Tyler is an ambassador for , so he is his own source of support.
It did however remind me of just how proud I am of him.
I think that every now and then it just hits me how isolated we can feel.
The bottom line is that there is limited support for children but wow wait until you hit adult services .
The services offered particularly for our young disabled people need to be reviewed. Actually I am going to change that to be set up as there is nothing there . This cant be achieved by one person , it needs a whole heap of affected people to shout loudly . The difficulty is that there simply aren't many people in Tyler's position.
It also needs professional s to understand that although it is a job for them it may be a life line to the families that they support . Over the summer we have had letters apologies for cancelled services, apologies for waiting lists, apologies for cancelled appointments .
This simply isn't right , when all the services do this at the same time it is a recipe for disaster and could have dire consequences. Surely the support services are aware of when the holidays are coming up and that people occasionally go sick.
I would absolutely love for someone to be allowed to shake everything up, I am convinced that there is a better way to offer the services given within the budget available .
Most of the staff that we are supported by work their socks off. But it has to be said I don't think this is the case across the board. Whilst waiting for a recent appointment , I had the chance to people watch as the clinic was running late. I watched the reception area with interest as I had been unable to get through by phone earlier in the day . The receptionist was talking to a colleague, fair enough until I realised they were talking about their holidays. Even I can accept that people need to exchange pleasantries and that it helps with team work . However after about 15 mins I wondered how they ever got any work done. The phone was ignored, patients arriving treated as if they were an inconvenience and to make it worse they were then joined by a 3rd member of staff and started repeating the same conversation all over again .
If this happens on a regular basis I dread to think how much admin time is wasted . Perhaps it would be appropriate to introduce a mystery shop into hospitals .
Anyway enough of that and on to more interesting things .
Fund raising .
Things are slowly starting to happen and dates going into the diary . I am looking forward to meeting up with Stuart later this week to chat over more idea's. Stephen P from the Observor has also been fab in trying to get things moving . I am constantly amazed at the kindness of family and friends , sometimes the support comes from where you least expect it . If you have any idea's on what we can do , please do share them, it could be as simple as a coffee morning or raffling a cake.
Canine Partner Assessment .
We went over for this last week and Tyler thoroughly enjoyed it . Even though the centre wasn't far from us to take the electric wheelchair the cost was £80. Also the day is quite busy and Tyler wasn't able to complete everything that needed doing so we have to go back .
The lady was lovely but they aren't medically trained so helping Tyler through the assessment was a learning curve for her as well. She has arranged for her line manager to do the 2nd assessment to check that Tyler is able to follow their guidelines with regard to traing a do . It would be slightly ironic if he was too ill to have an assistance dog.
On their website it is very clear that you have to go for a 2 week stay if you are to have a dog. I was wondering how Tyler would manage this , initially she said that I would stay too , but then after working with Tyler she said that they would do the training at home!!
So fingers crossed he can get through the assessment , if he does the next part of the process is a home visit to meet Charlie and Misty , that is going to be a whole other heap of problems. We are desperately trying to get them better behaved , but for those of you who know them you can guess just how difficult this is going to be .
A car to that can take the wheelchair .
It has become quite apparent that to allow Tyler as much Independence as possible , we are going to have to get a car tt takes an electric wheelchair . I was talking to one of my closest friends Lisa and she actually raised the same point .
You can use PIP to apply for a mobility car but for the type that we will need there is an advance payment of appx £6000, this seems daft to me as you are part way to getting a car if you have this money in the bank. Of course we don't as we are busy trying to fund the house adaptions , you also have to be able to manage with the loss of the PIP income.
However he is definitely going to need one so by hook or by crook as they say , but that's a story for another day .
Well I think that I have ranted on for quite long enough, in my next blog I will share some more of our story to date as I think it will help people understand just how amazing Tyler is .
As ever please do get in touch if you would like any more information
janice.ellis2@btinternet.com
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