NHS Needs to join up its services to support our most vunerable young people and become more cost : No news this week

NHS Needs to join up its services to support our most vunerable young people and become more cost : No news this week: I have just psyched myself up to check my emails in the hope that there might be some news on 1/ Armchair 2/Wheelchair 3/ Hous...

No news this week

I have just psyched myself up to check my emails in the hope that there might be some news on

1/ Armchair
2/Wheelchair
3/ House adaptions
4/Hospice

Would anyone care to guess the progress that has been made? You are probably right in assuming its absolutely zilch. Following my email to the hospice I was surprised to get an out of office on leave auto response . Whilst I appreciate that people go on leave it would have been nice to at least know the outcome of the panel which was now 10 days ago. I also chased this with their CEO but no response there either.
There is no news on any of the other items either, well one piece of news in that the supplier of the chair phoned asking for our OT(twice). From what I can gather he thinks the chair may be in the stock area, does this mean that their panel has ok'd the chair ? Your guess is as good as mine but here's hoping.
I was really touched by an offer from one of my closest friends saying if we really cant sort things through the NHS she wanted to help with the wheelchair. I am always amazed when people are so kind and it is that sort of thing that really keeps us going. I hope that it doesn't come to that but I think that we are reaching the point that we really need peoples help. I have always said that I wouldn't fund raise for things that Tyler needs and it is for us as a family to manage, I have never really understood how people contact the press and start raising funds for themselves within almost days of being diagnosed. But we are 8 years in now and I have accepted that the only way that we may be able to get Tyler what he needs to live a full and independent life is to fund raise. The house adaptions s are likely to be in the region of  £20,000 above the council grant .
However I don't think that fundraising is solely the answer because so many children and young adults need support. It is really up to the government to ensure that this age group is fully supported , support at this stage will reap personal and financial dividends in the years to come. They need a chance to become independent and confident members of society .
Please raise this with your MP and anyone else that you can think of .
 

NHS Needs to join up its services to support our most vunerable young people and become more cost : A lovely mothers day with a slight shock to keep u...

NHS Needs to join up its services to support our most vunerable young people and become more cost : A lovely mothers day with a slight shock to keep u...: A few more pics from the album. I must admit to being spoilt rotten for mothers day, a car valet, red roses, chocs and a book fro...

A lovely mothers day with a slight shock to keep us on our toes.

A few more pics from the album. I must admit to being spoilt rotten for mothers day, a car valet, red roses, chocs and a book from Ben and a colouring book and chocs from Tyler. The  best bit though was that Tyler had actually written my card himself, this may not sound much but it took a huge amount of time and effort. As he is left handed the only 2 things that he has written in the last year is this card and my Christmas card, I will treasure them always. I do admit to being a softie and have kept all mothers day cards from both my boys.

The shock that I mentioned came around lunch time when Tyler came down and said was he head ok, you can imagine my shock to see blood pouring out of his wound. He had fallen and banged his head, we are awaiting the Dr as I write this. Luckily we had a sterile wound cleaning kit and we managed to avoid going to A&E, ( Tyler never wants to go to hospital on a weekend again), Ben was a star and ran round getting all the bits and pieces that I needed. Touch wood all is fine now.

I wonder if any other parents have developed an almost irrational fear of technology, by this I mean phones ,mobiles ,emails, messaging basically any way of being contacted. It is a standing joke amongst my close family and friends that I never pick up the phone or reply to texts. This is something that has built up gradually and  I have been working on trying to improve and understand why this is happening. It dawned on me that we have had so much bad news over the last 7 years that  it has  become almost self preservation  technique. If people cant get hold of you they cant give you bad news, or put pressure on you to deal with things that you don't wont to. It is really hard some times to accept that you need to fight for items such as wheelchair s that you never dreamt in a million years that your child would need. Now that I understand it a bit more hopefully it will help me deal with it. I have also come to understand that you really have to enjoy the good things and live through the bad a step at a time. So after finishing this blog I am going to be brave and open my emails!!! 

NHS Needs to join up its services to support our most vunerable young people and become more cost : Tyler recovering well and the red tape hasnt moved...

NHS Needs to join up its services to support our most vunerable young people and become more cost : Tyler recovering well and the red tape hasnt moved...: I thought that I would start this post with a few of my favourite pictures of Tyler with some of the children that he has helped....

Tyler recovering well and the red tape hasnt moved on !

I thought that I would start this post with a few of my favourite pictures of Tyler with some of the children that he has helped. I must add that Tyler is Peppa Pig we didn't have a female volunteer so he as ever stepped into the breach, I dont know many teens that would do that .

Tyler is slowly getting back to himself he has some pain as to be expected, the metal clips come out tomorrow and from that he can start back at physio etc. I had hoped that we would be able to get him up to the children's hospice to use the pool to help with his rehab, unfortunately that sago is ongoing. We visited over a month ago to try and resolve this, unfortunately due to emails they never received and other issues it only went to panel yesterday. Our lovely GP came out to visit Tyler and she said that she had spent her Sunday writing up a report to support Tyler. The hospice had only written to her last Friday, and as she knew the panel was coming up she gave up her valuable free time. As it is we are not sure if they will have received it in time. Its so frustrating that just as Tyler really could do with the help red tape is holding everything up. I just hope against hope that I don't get a letter on a Saturday to say that he hasn't been accepted. It is a common thing to get bad news by post on Saturday when there is no one around to talk to about it.

As I have slowly cleared my emails I have also realised that there has been no progress on either the electric wheelchair or the chair to get the bed out of the lounge . I really wonder how we are meant to make people listen and get Tyler the basics that he needs to live a normalish life.

A lovely lady from clic sargent is liaising with the college to see if its possible for someone to come out for an hour a week to ease Tyler back into his course. It may be scans permitting and red tape sorted that he can enjoy a return to college in Sept . In the meantime we are just trying to look at some sort of holiday for him. The sad fact though for us and for other families in our position is that nearly always one parent has given up work , making finances tight.

As a side issue but something that could have hurt Tyler quite badly(he is numb on the left), I bought him some sweets and he suddenly shouted   and he had found what looked like a piece of glass in his sweets. Environmental health and the foods standards agency became involved and it was indeed glass, it came to light that the sweets were actually manufactured in Turkey . As they have had no other complaints they have decided not to take any further action, this could have shredded Tyler's mouth and the thought of a young child popping it into their mouth is horrible. I was advised to liaise with the firm as to what happens next, surprisingly they are not replying to any emails!! I have hunted on line and their information despite being a well known brand is really hard to find . I think that it is very scary that you could be buying sweets for your kids thinking that they were made here and infact they come from Turkey. To then find you have no redress when the sweets contain glass is beyond belief. 

Lets see if tomorrow brings any positive news!

NHS Needs to join up its services to support our most vunerable young people and become more cost : Update Following Tyler's latest Operation

NHS Needs to join up its services to support our most vunerable young people and become more cost : Update Following Tyler's latest Operation: To say that the last week has been stressful would be the understatement of the year. We as planned ,went to Southampton Hospit...