NHS Needs to join up its services to support our most vunerable young people and become more cost : Is there a straw that breaks the camels back!!!!

NHS Needs to join up its services to support our most vunerable young people and become more cost : Is there a straw that breaks the camels back!!!!: I needed to find some happy pics to start this off with!!! I don't normally like pictures with me in but I do like t...

Is there a straw that breaks the camels back!!!!

I needed to find some happy pics to start this off with!!!

I don't normally like pictures with me in but I do like the one of Tyler, me and Eileen which was taken at the AGM. I also love the pic of Tyler with his Uncle Jimmy(top one).

As I put in my last post Tyler recently had his scan, as any family in our postion will tell you the wait for the results is the longest and most stressfull time that you can go through. It involves lack of sleep, bitten nails and jumping every time you get a call.

As you can imagine this is a time where you can do with as little extra stress as possible.

During my last few blogs I have highlighted just a few of the battles we have faced in getting Tyler the help that he needs. You can envisage my reaction when I received a really distressing email from one of the places that we thought were there to support us . I was so upset that I haven't turned my laptop since, well that was apart from sending the email onto my sister to get some perspective. As she had been involved with the process from the start I knew that she would give me a sound opnion as to whether I was overreacting due to circumstance. Her feelings were the same as mine, for the first time in a long while I actually didn't feel upto replying , and again my Sis is stepping into the breach. All that I really want to say about it is that it was harsh, uncaring and it felt like that it had been written without any thought what so ever. The reply hasn't gone yet as I try really hard not to do anything in anger, and we really want to work with services and find solutions , sometimes there just has to be a common sense approach.

I sincerely hope that I never loose sight of the people that we try to support through the Trust. Once you become too far removed from families or run things as a professional institution you can loose sight of what is important. I wasn't going to post about this but an ex work colleague said that it might be good to - thanks Kelly.

It was lovely to catch up with some old work friends at a baby shower at the weekend, one of our Trustees(Carla) is expecting her first child soon and we spent a lovely afternoon in the garden eating cake. She even made the cake herself and it was amazing.

This was followed by an evening at the Dogs in Brighton to celebrate my friend Michelles 50th birthday !!!!!!!!!!! Tyler was really lucky and won quite a lot but Michelle and Duncan didn't get a look in , we are going to try horses next time to see if their luck improves.

We have all really enjoyed these trips out and it has served as a distraction but also lets us see that there is a normal life out there.

There is a lot going on at the moment and the next few weeks are incredibly busy but I hope that we are laying the ground work for some positive foundations for the future.

A friend always tells me however bad things are to think of 3 things for which you are grateful for each day. I always try to do this however hard things are , I guess it helps you to remain positive, but sometimes you just need to be quiet to let yourself process things .

Some exciting things are happening and I do hope to be able to share more soon.

Please do get in touch if you would like any further information on what we are upto

Janice.ellis2@btinternet.com

http://www.crowdfunder.co.uk/tylers-new-living-accommodation/

NHS Needs to join up its services to support our most vunerable young people and become more cost : SOUTHAMPTON BOUND

NHS Needs to join up its services to support our most vunerable young people and become more cost : SOUTHAMPTON BOUND: What a busy few weeks. Yet again I feel like I need to start with an apology , this is especially poignant as some ...

SOUTHAMPTON BOUND

What a busy few weeks.

Yet again I feel like I need to start with an apology , this is especially poignant as some really positive things are happening . I have spent the last week or so just feeling like I was trudging through mud and not sleeping . This often happens when we get a scan date through, I think I just needed to be quiet and process things, I cant thank the Trustees who always step in and help when I need to do this.

I tried something that will make many of my family and friends laugh, I was told that gardening can help lift your mood. So I took to our horrid back hedge and balded it !!!! There is definitely something in it as I am slowly feeling human again, hedge better look out though, not sure what I will do when its completely nude.

So we are off to Southampton shortly for Tyler's scan, any parent will tell you that the hardest time is while awaiting results. Most of the time you sort of manage to keep things in the day and make the best of everything, when waiting results its so hard to keep things in the day.

Any way on to more positive things , we owe a huge thank you to Micky fro the mobility centre in Bognor and an unknown gentleman. Thanks to them Tyler now has an ELECTRIC WHEELCHAIR!!!!!!. There are a few bits that we need to get to make it the best that it can be for Tyler but unbelievably the Willow Tea Rooms and The Railway club Bognor have just done some fund raising for us and we can get everything that we need, cant thank them enough. Tyler naturally wants the chair to be distinctive as he himself is. So we are currently looking for green paint,flags bag etc. If anyone has any ideas please do let me know.

This is going to make such a difference to him , it will be the first step in getting his independence back. Some difficult news was that Tyler remains completely numb on the left, and this is something that he and his family are trying to come to terms with. However we know that with the right equipment and support we can live a fulfilling and independent life. The next step is to get him a downstairs bedroom, with wet room (everyone should be able to wash independently ) and we are in talks with some local people as to how we might be able to achieve that , very exciting but cant say more at the moment. We are going to need to raise quite a lot of money to do this so any fund raising ideas please get in touch.

Tyler has also had his first swimming session, courtesy of Lauren at Avidsford Hilton, it WA  amazing once actually in the pool he was doing the crawl, brilliant definitely a teary moment. Another development    is that we are in talks with lots of people to see if Tyler could go back to St Phillip Howard to study. As this is just up to road to us he could jump in the chair and go there independently, so fingers crossed.

We are still awaiting advice from America on any options that they  may recommend medically, but I guess that they may want to see the scan from today . Please bear with us whilst we wait for results as it can be a little tense.

I am also thinking of my other amazing son Ben who has his first year exams this week, he is brilliant at what he does and so hard working. I know that he is going to amaze us all as he always does.

If you would like any further information please do let me know

Janice.ellis2@btinternet.com  

NHS Needs to join up its services to support our most vunerable young people and become more cost : *Positive Progress, but a difficult last couple of...

NHS Needs to join up its services to support our most vunerable young people and become more cost : *Positive Progress, but a difficult last couple of...: WHAT A WEEK I almost don't know where to start so much has been going on ! So first I must mention the Tyler's ...

*Positive Progress, but a difficult last couple of days. *

WHAT A WEEK

I almost don't know where to start so much has been going on !

So first I must mention the Tyler's Trust AGM, what a lovely evening, with the necessary legal bits done it was down to some wine, cheese and a little competition , won by Cassie who was presented with a bottle of white wine.

It was so lovely to see so many people there, nearly all of whom are now really good friends, and I am sure the new people will become so very quickly. All of this is down to Tyler he has a way of bringing people together,  friends had travelled from as far as Reading and Southampton to be there. I don't know many people who can inspire  others so much, after he gave his talk  there were a few tears to be seen and such a round of applause it was an incredible moment. Beyond proud as ever .....

A huge huge thank you to Eileen who organised the meeting, to each and every Trustee, the Mayor who came along and stayed for the whole evening. Actually just a huge thank you to every single person who came. 

The very next day turned out to be pretty special as well.

It started with breakfast at the Harvester with Tyler, Vicky and Susan to have a catch up before heading off to Spirit FM. After a late night the night before a good breakfast was just what the Doctor ordered.

At Spirit we met with Sally the MD(who made me a wonderful cup of coffee!), Stuart and Simon, Stephen from the observer was also a key part of our discussions. We were there to talk about whether Spirit/Observor could help with the house adaptions that we so desperately need.

I felt for the first time ever that people were looking at Tyler with understanding, empathy and care. It was more than that though it was the fact that they were willing to do so much to help us, to give Tyler a chance of an independent and fulfilling future , he has lost his teenage years completely having been diagnosed at 12. But with the help of Spirit/Observor and the local community we can give him his twenties,we may not have to wait for all the red tape to be sorted out for a grant.

Sometimes things are needed quickly, not at some unknown date in the future. We are still living with a bed in our lounge as it seems impossible to get Tyler the agreed arm chair. It has been agreed but trying to get it is another matter! One OT thought we already had it ,another was due to chase and so it goes on.   

It is because of all this red tape, that I cant describe the relief and the gratitude I felt , that amazing people are willing to help, meaning some of the pressure is reduced on us. We have struggled for so long and it has been difficult asking for and accepting help but Tyler deserves the best possible future and we cant do that on our own. Tyler does the most amazing work for seriously ill local children and young people, he is passionate about this and we just need to make sure that he gets the help he needs to allow him to achieve this . 

This has come at just the right time, it is very hard to accept sometimes that the future you anticipated is not going to be the one you have . The emotions that this brings up can make life difficult at times, I have to say also missing hubby Craig, a family in our position can often feel isolated and its even harder when he is away. There is no choice in this , when Tyler became ill ,we made the decision that he would do everything he could career wise as I would have to give up work. What's lovely though is that Ben is home from Uni for a while, have missed him so much but so proud of him.  .

Watch this space for more news .

If anyone is able to help donations can be made at http://www.crowdfunder.co.uk/tylers-new-living-accommodation.

I must also mention that Stephen from the paper went to a lot of effort to find Tyler a place to swim, The Avidsford Park have stepped in , how wonderful is that . This is a real god send because although we have been accepted by the Hospice I still haven't had a call from our key worker to arrange swimming etc. Tyler's lovely physio Richard has agreed though that he will come up for the first couple of sessions which will be a huge help.

So at the moment we are concentrating on getting a routine in place to give life a purpose, a sense of achievement and all the things that most people take for granted. The aim is to get everything in place for Tyler to go back to college in September, this will allow a more normal life, he just needs all the support/equipment to be in place for him to be able to achieve that .

Getting out at times can be difficult but Tyler loves company so lets hope for a good summer which lets us host lots of BBQ's. If anyone has any idea's on fun accessible things to do locally please do let me know .

Janice.ellis2@btinternet.com 

NHS Needs to join up its services to support our most vunerable young people and become more cost : Possible Progress but a reality check as well

NHS Needs to join up its services to support our most vunerable young people and become more cost : Possible Progress but a reality check as well: MY AMAZING SON I feel like I need to start with a bit of an apology, there was so much that I should have been doing this ...

Possible Progress but a reality check as well

MY AMAZING SON

I feel like I need to start with a bit of an apology, there was so much that I should have been doing this weekend but some how I felt the last 16 months just came crashing in on me. So much has happened in just over a year it almost makes me panic to just think about it . I have watched my son fight so many obstacles that it causes a pain only a parent can possibly understand .

I read an article in a paper this week by a man whose wife had been diagnosed with a serious but non life threatening illness. This without doubt changed his life as he became her carer for a while but the article was all about how it affected him. He concentrated on how much it affected him and how he had to ensure that he had regular breaks. Tyler has been ill for 7 years now and I have never once felt like the gentleman in the paper does , and I have never encountered another parent who does. I guess that that is what a parent is being about. You never dream of opting out you fight for the best for your child whatever their age.  There may be something in looking after yourself but as every parent I know is fully aware you always put your child first. I don't mean to be detrimental to the gentleman's struggle , it is just a very different perspective to most people that I come across. I guess maybe I shouldn't feel so guilty about needing to shut off for the weekend .

We have had some fantastic but also difficult news in that the hospice  now accepts that Tyler meets their criteria. This means that Tyler can use their pool, I am just waiting to see if he can use the rest of the facilities that could give us both a well earned break. You never dream that you would be pleased about your child being able to use a hospices facilities, but hey ho  its progress.
There might also be some other positive news thanks to our friends Sue and David on the wheelchair front , it might not be a long term solution but it could change things for the summer, watch this space!!! If this doesn't work a close friend and family have offered to help . 
On other issues we are still awaiting news, I know that staff have annual leave and that they cant help going sick but it is soooo frustrating when there is no cover and things get delayed by weeks. I am so touched though how local people and family are coming together to support us in getting everything sorted out for Tyler, and as ever I thank you from the bottom of my heart.

A meeting tomorrow with Spirit FM and the Observor may hopefully help things even further. it would be nice to get things moving on the house front before the next scan . A local architect has been in touch and offered to come and look at the house for free, again a real act of kindness from a stranger. As we don't have a clue when we will get to the top of the council list if we could do things ourselves it would be so much better.  

I try hard to keep Tyler's Trust separate to this blog but I have to say a thank you to the trustees who have ensured that we are all set for tonight's AGM. Its so wonderful to know that there support is there when we need it most . I must also thank my sister  Karen who despite having an incredibly busy job and a young family stepped in to help with some admin. Most of our family are in the North East and that makes seeing them difficult  but we always know that they are there for us in anyway that they can.  When they have needed to they have dropped everything and just got in the car and been here, that is so special and its important to remember the good things in life.
I hope these ramblings make sense, if you would like any further information please drop me a line at Janice.ellis2@btinternet.com