NHS Needs to join up its services to support our most vunerable young people and become more cost : *** I wonder if Tyler will be 64 before anything g...

NHS Needs to join up its services to support our most vunerable young people and become more cost : *** I wonder if Tyler will be 64 before anything g...: What a few days !!! I am beyond frustrated with the powers that be but so touched by the support that local people, Fri...

*** I wonder if Tyler will be 64 before anything gets sorted out ***

What a few days !!!

I am beyond frustrated with the powers that be but so touched by the support that local people, Friends and family are showing us. In fact if it wasn't for the kindness that we are being shown from our social circle and indeed the kindness of strangers  think that I would be grey and have no finger nails left.

So where to start , the arm chair despite being approved and ordered is yet to appear, no one quite seems to know where it is !! With regard to the wheelchair  we have now raised about £2300 but with all the extras that are needed due to Tyler's health it is going to be nearer to £6000 as opposed to £5000. Once we reach £3000 I will order it as it takes about 13 weeks to build, we really need to do this soon to have it ready for the college term. Its really hard for Tyler to go to Physio etc and try these things out but then disheartening when he realises the wait that is involved. However you never hear a moan or grumble pass his lips. I must mention my amazing friend Lisa though as she has said that if we can get to nearly the full amount she will add the last £1000, how generous and wonderful is  that .

In fact today he has been trying to look after me , I had to have a biopsy this morning meaning tat it is quite painful to walk. As he is numb on the left anything in the kitchen is very difficult and potentially dangerous. To my amazement and delight he had got his walker , and made me a cup of coffee, he then wheeled it in to the lounge. There wasn't much left in the cup and it was a tad cold but it was the best cup of coffee that I have ever had . He amazes me so much that fact that he cares so much when he has so much to contend with just makes my heart want to explode, and I simply want to be able to give this amazing young man everything in the world.

I cant fix his health for him but I can do my best to ensure that he has the best chances possible, and the basic equipment to allow him an independent life. To me it seems so wrong that when someone , not just Tyler, but anyone needs a wheelchair to have a independent life and there are millions going out in foreign aid .   I try to steer clear of anything political but this is something that I really don't understand, but perhaps that is a conversation for another day.

So back to reality I have heard back from the CEO of the children's hospice and as they didn't have the consultants letter for the last panel we do have to Wait for the next one. My request for Tyler's case to be considered separately fell on deaf ears. Hears hoping that the next one brings some joy, people have been kind enough to put forward some suggestions with regard to pools but the difficulty is that they only ones suitable are just too expensive. We need somewhere quiet with a degree of privacy at least to start with, there are some ongoing enquiries so we can live in hope.

I think one of the issues that families face is that when a child is sick for a long time you have to live on one salary. This means that things you would normally replace as you go along have to be patched and repaired and there are only so many times that you can do this. We have finally managed to replace the downstairs sink, only to find that the bath has suffered some sort of damage!!! This meant a leak through the ceiling and is our next issue to resolve.

Just when things feel too much something always happens to brighten things up, I have taken 3 calls today and received messages to say that people are looking into how they might be able to help us . This means so much as there comes a point when you realise that you just cant do it on your own. That is very hard to accept but I cant thank each and every person who has come forward and offered us help and support. Things don't happen overnight but I am definitely starting to feel that community help might be quicker than waiting for red tape to happen.
We received a letter to say that we were on the waiting list for the disabilities facilities grant, and I think that it said we were a priority. The wording was a little confusing, and as I a an ex civil servant that is saying something !.If I have read it correctly even as a priority case they can give us no indication as to when we might even expect to get to the next stage. This means the more that we can do ourselves the better our chances are of getting what we need. So thank you to Mike B, Patricia, Liz,Sue and Trish amongst others for cheering up a despondent mum.
We have a meeting next week with Spirit FM and the Obsevor to see if they can help in any way, I am trying not to get too excited but this might be the only way that we can get things done before Tyler is retired.    

So from the bottom of my heart a huge thank you to each and every person so has supported us . Please do keep the messages of support coming because sometimes it really does help us keep going. 

NHS Needs to join up its services to support our most vunerable young people and become more cost : The Most Inspiratonal Group of People you could wi...

NHS Needs to join up its services to support our most vunerable young people and become more cost : The Most Inspiratonal Group of People you could wi...: A A Privilege and an Honour. Last weekend I was so proud to join the newly appointed young peoples ambassadors for the Brain Tumo...

The Most Inspiratonal Group of People you could wish to meet - The new Young Peoples Brain Tumour Ambassadors

A

A Privilege and an Honour.

Last weekend I was so proud to join the newly appointed young peoples ambassadors for the Brain Tumour Charity. Each one of these young people have an amazing and courageous story to share, they come from all over the UK to ensure that there is support wherever needed. They each applied and undertook a video presentation , a huge task for anyone but especially for those in difficult circumstances.

It must have been an incredibly difficult tasks for the team at Brain Tumour Charity  to select their team but they did and these 22 young people are the best of an amazing selection of young people.

What impressed me most was that there was not a moan or grumble in sight, the whole weekend although hard work was fun, and informative. The young people seemed to just gel and worked so well together. Not all of the Ambassadors have a brain tumour but will have been affected by one in some way, this could be through a family member . This meant that everyone had different strengths and abilities and as a team they simply recognised each others strengths, ensuring that everyone took part.

It was also great to meet the Brain Tumour Team, having often chatted to them on the phone I had only met Elissa. They are all so positive and helpful it was really great to put faces to names and learn lots more about their invaluable work .

Well Done one and All Amazing Work! 

NHS Needs to join up its services to support our most vunerable young people and become more cost : ***** Lovely weekend , but trying not to let thing...

NHS Needs to join up its services to support our most vunerable young people and become more cost : ***** Lovely weekend , but trying not to let thing...: I thought that I would start this blog off with some pics of some of my amazing family. When things get tough it is your fa...

***** Lovely weekend , but trying not to let things that I cant control get to me !!!**

I thought that I would start this blog off with some pics of some of my amazing family. When things get tough it is your family and friends that sometimes keep you sane.
I have had a quiet few days as every now and again I feel the need to just shut down and be quiet, sometimes when I think about what we have been through in the last 7 years I feel an overwhelming sense of panic take over. We have come so far and I don't have the words to express just how painful and difficult things have been at times. Only a parent will understand the nights that you just cant sleep because you are so scared about what the next day will bring. All I can say is that there are good days and bad ones, I try to enjoy the good and simply survive the bad. There is nothing worse in the world as a parent as not being able to make things right for your child.
Tyler had another go in the electric wheelchair that he needs last Thursday and he was a real whizz in it, he went to Costa and bought himself a drink. This may not sound like much but to us it is absolutely amazing , it showed just how much independence he will get with this chair. The downside is the £5000 price tag, which is why we are now fundraising. He looked so happy and confident in the chair it broke my heart a little not being able to simply say ok lets get it then .The chair takes 13 weeks to build, they will start building when we have about 2/3 's of the money but obviously wont deliver it until it is all paid. That is why we are saying to family and friends please could you make a small donation even if its a £1, together it will all add up. It will also help if you could please share the story. If you work for a firm who might be able to help or have any fundraising ideas please do get in touch Janice.ellis2@btinternet.com, the fundraising page is      http://www.crowdfunder.co.uk/tylers-new-living-accommodation?.
We have had some lovely donations already , a huge thank you to everyone who has donated including my friend Lisa's mum and Sis who donated a whopping £250. But please don't think that we don't appreciate each and every bit of support and if everyone who knows Tyler donated a £1 we could book the chair tomorrow.

We had a lovely BBQ yesterday for the boys birthday and the shone actually shone, for those of you who have experienced some of the weather of previous BBQ's you will know what a relief that was. So thank you to(amongst others) Michelle/Duncan/Sophie/Lee/David and Sue for a lovely evening
It was great to catch up with friends and just relax. It actually felt like even just for a short while like things were normal! I also spent some time with my friend Christine over the weekend and again it was just like being a regular person

NHS Needs to join up its services to support our most vunerable young people and become more cost : If only we could win the lottery so many problems ...

NHS Needs to join up its services to support our most vunerable young people and become more cost : If only we could win the lottery so many problems ...: I have always thought that if you have enough money to pay your bills, have the odd night out and an annual holiday that should be ...

If only we could win the lottery so many problems would be solved!

I have always thought that if you have enough money to pay your bills, have the odd night out and an annual holiday that should be enough. Due to the position that we find ourselves in I am having to change that point of view.

Tyler had a lovely day at a friends birthday last weekend but was quite quiet afterwards, this was due to the fact that he found it hard as in his words he was "stumbling around". Everyone loves Tyler he is one of those special people that you cant help but be inspired by , but like all of us he has days where he finds it hard. As a mother it is so hard watching this amazing young man help others so much and not being able to give him what he needs. There are so many things that could help him at the moment which are either not available on the NHS or have immense waiting lists.

If we could get him into a swimming pool it would be amazing , I am going to try a few local venues and see if they can help. The area does need to be relatively private, Avidsford Hilton has a lovely little pool but membership is £100 per person per month if we could get him in there it would help so much, will also try the place at Fontwell. If anyone has any ideas where we might be able to get him some quiet pool time please do let me know. I will then be able to liaise with his physio and get him to come along to the first session for safety purposes. Following the last op Tyler is virtually completely numb on the whole left hand side of his body and being in water would just help so much.

So today we have been up to have a wheelchair assessment with a lovely man at Donald Wilson House. He has come up with the perfect thing for Tyler and this is something that we cant get on the NHS or at least not for a year. A chair was recommended that Tyler could use at home,college, and anywhere that he needed to go . It was so wonderful to see him whizzing distances around St Richards that he just hasn't been able to do ,he looked so happy and independent. The chair does cost more than we thought due to the specialist bits that he needs , so for this alone we need to raise £5000. The chair can be built in 3 weeks we just need to come up with the cash, a friend mentioned crowd fund raising but I am not sure how we do this, Craig is looking into it. I am loathe to do this but I am going to ask if you read this blog perhaps you could donate a £1 towards this life changing wheelchair.

Chesnut Tree has acknowledged my complaint but it is not looking likely that they will help us. I find it so hard when I see posters everywhere asking people to fundraiser for them, I just wish that they coud help a young man so close to them and whose whole life they could change. Anyway so what does Tyler need:

He needs his electric wheelchair (yesterday !!!!!)

Therapy IE swimming/massage/  - to get him as mobile as possible      

House Adaptions                         - to allow him to bath without having to need his mum to help him.

Holiday  , what I so wish that we could concentrate our finances on is a holiday for Tyler so that he can rest and recuperate. Unfortunately due to the above that is so difficult.

Whilst all of this is ongoing Tyler was asked if he would consider becoming a young persons ambassador for the Brain Tumour Charity. Of course he jumped at the chance as he feels that it is so important to make everyone aware of the symptoms of a brain tumour. So whilst all of this is ongoing he is going on an induction course for them as he just wants to help those who are suffering.

As a mum I am so proud of him and just wish that I could get him what he so desperately needs. He deserves so much but short of a lottery win  I fail to see how I can get it for him. I am sure that any other parent understands how useless this makes you feel.

If you can help please do get in touch, perhaps you could hold a sponsored event or even simply pop £1 in the post . Once we have 3/4 of the wheel chair omeny they will start to build it but need the full amount for delivery.

You can contust us at Janice.ellis2@btinternet.com or donations can be sent to 74 Orchard Way Barnham PO22 0HY. I find it very hard to post this and can only hope that any parents who read this understand xxx    

NHS Needs to join up its services to support our most vunerable young people and become more cost : A lovely day but upsetting news as well

NHS Needs to join up its services to support our most vunerable young people and become more cost : A lovely day but upsetting news as well: Disappointing and Frustrating News I haven't been able to write for a few days as I was so upset. We had just come back fro...

A lovely day but upsetting news as well

Disappointing and Frustrating News

I haven't been able to write for a few days as I was so upset. We had just come back from Tyler's last hospital appointment when I received a letter from the Children's hospice to say that Tyler didn't meet their criteria. The very next letter that I opened was a plea from Tyler's consultant oncologist to the hospice asking them to admit Tyler, his letter clearly showed that he met their criteria. I can only assume that they hadn't read this prior to making their decision, I have therefore asked them to read the advice and review their decision. This doesn't really help Tyler in the interim as he needs the support now, I have also asked that they use common sense and support a young man that does so much for others and lives just up the road for them. Otherwise we are going to have to try and find somewhere locally that might let him use their pool etc.

It would also appear that we are likely to have to fund his wheelchair ourselves due to NHS restrictions and timescales. This is likely to cost in the region of Up to £2000, this may not sound a great deal but I have not been able to work for 2 years. In addition to this although we will qualify for a council grant there will be a likely shortfall of up to £20000 - £25000. This is an amount that we are unable to raise, therefore we are going to have to do something that we have never done in all the time that Tyler has been ill and ask for help. We would love to hear from anyone who has any ideas as to how we can fund raise or that can support us . To assist with this we will be setting up a BT donate page with a separate bank account, any funds not used by us will be donated to Tyler's Trust. This has been really hard for us to reach this decision but we have to do what we can to ensure that Tyler has everything that he needs.

We had a really lovely day today and Tyler was thrilled to have been invited to a very special young mans first birthday - Harvey. His lovely parents Sophie and Lee have supported us in so many ways along our journey and become good friends in the meantime. It is peoples kindness that helps us keep going . To finish off a lovely day I treated myself to a game of Bingo with my best friend Michelle who has saved my sanity on more than one occasion!!! It has also been absolutely great having some off our family visiting from up north this week.

Please do get in touch at Janice.ellis2@btitnernet.com with any comments or suggestionsxxx    

NHS Needs to join up its services to support our most vunerable young people and become more cost : TYLER DELIVERS HIS FIRST BOX OF 2017!

NHS Needs to join up its services to support our most vunerable young people and become more cost : TYLER DELIVERS HIS FIRST BOX OF 2017!: First box delivery of the year Last week Tyler made a very special box delivery to an amazing young man also calle...

TYLER DELIVERS HIS FIRST BOX OF 2017!

First box delivery of the year

Last week Tyler made a very special box delivery to an amazing young man also called Tyler, this is the first box that he has been able to do post surgery and when he knew the young mans name he just had to go along. The box had been put together with lots of love by Tyler's gran and granddad who also help out with the Trust and it was their first delivery as well. They all had a lovely afternoon and thought that Tyler was such a brave and inspirational young man and that his family was so brave and supportive. It brought it home to me just how amazing our Tyler is , to have started something so special as the Trust and to have kept it together for 3 years despite the most awful diagnosis himself really does bring tears to my eyes.

We couldn't have done this however without our amazing team of Trustees: Michelle Dodd,Eileen Gibbs,Wendy Hudson, Trudi Lucas,Leanner Farr,Carla Hornby,Susan Hollingdale,Susan Toms,Craig Ellis and Jenny Love (and me of course). We also have 2 new invaluable supporters who I hope will join us on a permanent basis Karen and Bonnie(pet therapy dog) Sonia and Cassie. We really couldn't have done it without them, the same goes for our fantastic patrons Fearne Cotton, Nick Herbert MP and Paul Jones. They are all now good friends and have saved my sanity at times . There have been so many other people as well that have helped and supported us in so many different ways I cant possibly name them all but thank them from the bottom of our hearts, they include my lovely Sis,Karen who helps with bids,my aunt who does leaflets ,Ben Tyler' twin brother who is always there quietly in the background and so many others. What Tyler has achieved with this amazing team is incredible and so many local people have helped him on a personal level from the Kevin the barber making sure that he gets his green hair to Mandy the optician making sure that he has glasses to match.

When I am feeling a bit down with everything I just have to remember some of the acts of kindness that we have been shown. We are always looking for new people who can help out with our invaluable work, this could be as much or as little as you are able to give. We have volunteering openings in anything from Admin,helping at events,promoting our work, assisting at our free family fun day for our families. Please do get in touch if you can help out even if its only for an hour a month. We have our AGM on Tuesday 2nd May in Bognor if you would like to find out more .

So where are we on a personal level, well with wheelchair which I thought was now being asse'd at Donald Wilson House, this apparently that is not the case. We received a letter on Saturday, and you all know my hate of Saturday post !! Advising that we have to have the house assessed again but the apt is over a month away. This is so frustrating as there is likely to be a waiting list after this , I hope that after Thursday we will know what chair Tyler needs and we had been hoping to discuss possibly getting him to college for and hour or so a week. Without a chair this may be impossible, it was actually this process with the chair that made me start my blog, I will try to get the apt brought forward so fingers crossed. But some good news the arm chair has finally been approved, this will make such  a difference to Tyler as we may finally be able to get the bed out of the lounge. To be able to sit in a chair to eat meals will be such a boost for him. On not such a good note we are still waiting to hear from the hospice, this is such a shame as if Tyler could get in a pool at the moment he would come on leaps and bounds. I am going to try and focus on the positive whilst highlighting the issues that we face. To this end I am working on a paper to highlight the issues around transmission and how we can work with local hospitals to improve the situation we and others find themselves in . I already have in place a meeting with the CEO of Chichster,Worthing and Brighton hospitals and the CEO of Southampton has expressed an interest in reading the paper. The purpose of this blog is not just to have a moan but to highlight issues and work with people to maybe find some solutions. I am passionate that we don't simply focus on ourselves but share our experiences to improve processes for every family in our position. No family should have a seriously ill child/young person and have to fight in the way that we have to simply get basic items. I appreciate that most staff in the NHS work their socks off and this is about working with them and understanding the issues that they face. On a local level Tyler's Trust wants to help with maybe decorating a teenage area and we are going to look at short and long term aims to support the hospitals that we cover.

As some of you know we met with a team from DIY SOS, we came very close but weren't lucky enough to be selected, another very deserving local family has been chosen nd I wish them all the joy that will come from this. For us it means that we will have to fund raise at some point to get the house adapted for Tyler to have a downstairs living area so if anyone has any ideas please do let me know. We will get a grant I believe but it wont be anywhere near enough, I also don't think that we can remortgage as I have had t give up work to support Tyler. At present the council is looking at initial thoughts on how the layout of the downstairs area could be adapted to best support Tyler. Any ideas please do let me know, my lovely friend Lisa is really helping with this and you could share your thoughts with her as well.

One simple way that could really help us is to promote this blog, please could you email it to everyone in your address book/face book page and ask them to do the same . We really need to highlight the very real issues that local people are facing please help if you can. If you would like any further information just drop me an email at Janice.ellis2@btitnternet.com.