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...

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 Hospital last Tuesday for Tyler's operation, it didn't start well as when we got to the ward the clerk asked what we were there for ! A nurse did actually know that we were coming but not what for.Due to bed shortage we were told that we were in a room not normally used and that we would only be there for that night. When we enquired where we were going we were told that it was unknown and we might not find out until Tyler was in recovery. This would be extremely upsetting for anyone but particularly vulnerable patients, they need to know what the plan is and that their family know where to find them. After a visit from one of the Matron's (Natasha our guardian angel), a plan was agreed which allowed Tyler to know what was happening, this greatly reassured us both and I was pleased that I would not be wandering around Ston hospital like a bag lady.

Luckily I had taken plenty of Tyler's medication into hospital as the Doctor didn't book him in until around 10pm, this was following a 4pm arrival time. He hadn't read Tyler's notes and just asked us to explain why he was there, this meant that he was unable to answer any of our questions, he was also a tad careless with some paperwork which a lesser person might have had something to say about.

Following this less than auspicious start we hoped that everything would now run smoothly, I am sure that you can guess that it didn't! The following day started well, The Dr and all relevant staff had seen Tyler by 9am and as he was the only person on the list we simply had to wait for the porter. To our surprise the Dr came back a little later to say that they were missing some of the equipment needed for the operation. You can imagine our feelings at this point, we were advised that a hunt would be undertaken in the hospital and if needed a courier would be dispatched with the equipment. We never really got to the bottom of why the equipment wasn't checked the day before,  we were told we would hear more at 12 noon. After a nervous wait the Surgeon popped up and said that the kit was on the way. By this time Tyler is naturally getting a bit fed up as he is nil by mouth, we were all becoming anxious and stressed as the time went on . Some hours later the surgeon came back and said the kit still wasn't there and due to the complexity of the operation he didn't really want to start it much later. Following further discussion it was agreed that the operation was no longer going to take place that day, initially he suggested we come back another time soon, after we explained that this just wasn't acceptable it was agreed that it would take place the next day. The cost to the NHS must have been immense a empty theatre, a whole surgical team on stand by and a courier bill to be paid, the emotional impact it had on us as a family is immeasurable. Tyler as ever  was a star and just wanted to eat, so following a very expensive trip to Marks and Spencers at least he was comfortable. As a side issue why are the shops so much more expensive than their own branches on the high street.

The next day again started off smoothly and we had a chance to chat more to the surgeon, he explained that the procedure was rare on patients with a brain tumour and asked if he could video Tyler for training purposes, this was immediately agreed to as Tyler always wants to help others if he can. The purpose of this operation was to reduce a tremor which shook the whole of the left side of Tyler's body, there aren't really the words to explain just how awful the tremor was, made worse by the fact that Tyler is left handed. It meant that for the last year he couldn't go to college ,socialise or do much other than be on his Ipad on a bed in the lounge. The tremor was so severe that it was scarring his back where he tried to control it, therefore you can imagine just how much he wanted this operation.

Thursday seemed to drag on for ever and I cant thank the clic team Beth, Liz and Jo , along with Natasha, and and Ryan for popping up to check that I was ok. Eventually the call came that I could go down to recovery to see Tyler and Jo came with me. When I saw him and the fact that he was lying there still  I burst into tears and I wasn't the only one with tears in my eyes, particularly after the surgeon showed the pre surgery  video, it was incredibly emotional .

The surgery had been incredibly painful for Tyler which as a mum was really hard to hear, we knew that he had to be awake for some of it but we never dreamt that he would be in pain, this is from a young man with an incredibly high pain threshold and someone who never complains. However he was chatting away with the nurses and making them all laugh, many of them knew him from one of his previous 25 operations, he also stands out with his bright green hair. I have the utmost respect for the talent and ability demonstrated by the surgeon and the belief that Tyler should have a chance of a tremor free life, we cant thank him enough for that .

The surgery was more complex than I think we understood and the effects on Tyler were not insignificant, however the hospital seemed very keen for him to go home, which was his wish to. It was only the physio who said that she didn't think Tyler's mobility was up to stairs which I completely agreed with. It was agreed that we could go if he slept downstairs, for those of you that know Tyler Mmmmmmm?

Shortly after this I noticed that his arm was swelling up around the area's that had had tape on them, it quite quickly spread and became painful. The nurse checked then the nurse practitioner, SHO and Registrar   , by this time we had reached Tea Time , and it was decided that it needed to be treated with antibiotics    . We knew from experience that it would take hours to get the medication and we were facing up to o a 2 our drive to get home, by this time Tyler was feeling very unwell.

I hadn't ordered Tyler any dinner in the morning as I thought that we would be going home. When I realised that it was likely we would still be there I liaised with the catering rep and asked for a meal to be ordered. I simply couldn't make him understand what was needed and a nurse had to step in , however no meal ever turned up. This is one of the reasons that I would never leave him alone in hospital, I  need to know that he will have medication, fluid and food . No one would have realised that he didn't have a meal and he wouldn't tell anyone, how many other patients suffer like this due to inability or capability to communicate, this scares me beyond belief. In this day and age can people really go hungry in hospital, this isn't an isolated incident ,several times I have had to prompt a meal being ordered or request a jug of water.

As a compromise we agreed that we would spend the night in Clic house which is in the hospital car park, meaning I could run back over to the ward when the meds were ready,  my husband had to literally carry Tyler upstairs to bed. He didn't want to eat or drink just sleep, alone with him that night for the first time in a while I felt scared . He really didn't seem well and I simply didn't know if I could get him down the stairs into his wheelchair and back to the ward if I needed to . It is so hard as a parent to watch your child suffer and to not to be able to help them.

The next day Tyler didn't really seem much better and struggle to pet Bonnie, the therapy dog who he loves to bits(and her mum Karen of course, the kindness of family, new friends and old is what keeps me going sometimes). I just didn't know if we should go home or go back to the ward, but Tyler was desperate to go home so we agreed that we would ring for advice should he get any worse. Once home he just collapsed into his own bed and slept.

Being ill over a weekend can be quite scary and many of your support workers work Mon-Friday and there is a lack of senior staff present. We have had a really bad experience of a weekend admission and we swore unless it was life or death we wouldn't let that happen again .It was due to this that when Tyler was showing signs of possible shunt issues  on Sunday night that we did everything we could to wait until the next day. I think that as the parent of a seriously ill child you become so in tune with them that you know instinctively when they need medical treatment. Tyler also knows this himself as much as he says he is not going back to hospital when things become crucial he agrees.

There was quite a lot of relief when it was Monday morning and people were about again!! His wonderful Snowdrop nurse came out and it seemed to be that the antibiotics had started to kick in . There are a few bits that we have to monitor for the next few days but we have GP/Nurse visits organised. It would be so much more reassuring if there was more cover for the weekend and evenings , sometimes you just need someone to talk things over with.

So at the moment Tyler is home but is going to need intensive physio/OT and we will see how things go, but this week as he has metal clips in place its just about rest and being at home. I apologise for the length of this blog but wanted to share our experiences in case it can help others, or simply put us in touch with others in similar situations who might just want to chat.       

  

NHS Needs to join up its services to support our most vunerable young people and become more cost : Its off to Southampton again

NHS Needs to join up its services to support our most vunerable young people and become more cost : Its off to Southampton again: I have started this blog with a few photo's as I think that it is key to remember in all of this that Tyler is a young man who lov...

Its off to Southampton again

I have started this blog with a few photo's as I think that it is key to remember in all of this that Tyler is a young man who loves life, who has a family who love him and is the bravest person that I know. I hope for those of you that don't know him that the pictures allow his personality to shine through. This is a very stressful time for us as Tyler goes back into hospital today for a rare procedure. I have watched him over the last few days coming to terms with the process and he really is the most courageous young man, no moaning or grumbling from him, I don't know any adults who could manage as well as he does. He always has a laugh and a joke for when the nurses visit but be warned if you meet him you will learn an awful lot about life savers , Fearne can testify to that !

In the last few days I have been trying to sort out some of the red tape for when Tyler comes out of hospital. I think that my hair is now going grey and I certainly have no finger nails left! We hope to get Tyler into our local children's hospice as they have a pool and this would be really really beneficial to his rehab. My sister and I went along for a meeting some weeks ago and met with the nurse in charge and the CEO. Since then it would appear that nothing has happened, after 2 weeks they wrote and asked for a form which I promptly emailed back to both parties. I received an acknowledgment from one of them, only then to yesterday get a letter asking me for it !! This is incredibly frustrating at a time that we could really do with out it  , but apart from anything Tyler will need that support. So one issue dealt with I moved onto the arm chair so that we can get the bed out of the lounge, apparently its still with panel. I asked if anyone could tell me when they were sitting or if I could contact them but that was a big no. I think that we have been trying to get this chair for about 8 months now , and don't even get me started on the electric wheelchair. We did have some very nice people come round to look at the house from the council to look at making a downstairs flat for Tyler with a wash room. He explained that everyone is governed by different acts which complicates thing s, if Universal Credit can join up benefits, why cant these acts be joined up. The grant that we will get will not be anywhere near enough to pay for the conversion so we are likely to need to raise appx £20000, so if anyone has any fundraising ideas please do get in touch. I have tried to keep my blog relatively constructive and to share some of our experiences in the hope that others coming behind us may not have to go through what we have.

I hope that no other parent ever has to be told that your child has a brain tumour and may not live. Unfortunately about 400-500 children get that news each year and that is without the other cancers and life threatening illnesses. When you are given this news your heart breaks into a million pieces and whatever happens it never quite goes back together. To watch your child fight and suffer for years is unbearably painful, but as a parent you offer the care and love and support that keeps you going. What is so hard is when you cant get them the help that they need, you know its there but you just cant get it or you have months and months of assessments and paperwork to contend with. I am highlighting this not just in the hope that someone may help but that for all the children that come after Tyler there may be a process in place. Our brave children are amazing and deserve to have the chance of a normal life after all they have contended with.

I am not sure that I will have internet when we are in hospital but I will update as soon as possible.

Tyler loves cards if you are able to send one please do so to :

D Neuro Southampton University Hospital Tremona Rd, Southampton Hants.      

NHS Needs to join up its services to support our most vunerable young people and become more cost : What a few days

NHS Needs to join up its services to support our most vunerable young people and become more cost : What a few days: Well things have been really chaotic for the last few days, red tape is such a nightmare ! On a positive note Tyler is going in for his op n...

What a few days

Well things have been really chaotic for the last few days, red tape is such a nightmare ! On a positive note Tyler is going in for his op next week which will hopefully really help to improve his quality of life, so I am trying to sort out as much as possible before that . I was impressed yesterday when we went to Southampton hospital to find that 3 Consultants were seeing us together. They didn't rush us and we were with them for nearly an hour. Things remain somewhat unsettled but they have written to Boston for advice, so we will have to wait and see what they come up with. On not such positive notes apparently the chair that Tyler needs so that we can get the bed out of the lounge is still with the panel. Having been once they asked for further information and we now have to meet until they meet again for further information, I had thought that this was going to be sorted out much more quickly but there seems to be no way of speeding up this process which doesn't help Tyler much. The same appears to be the same for a wheelchair we have to wait for an assessment on which there is a waiting list. Whilst I understand waiting lists we have had a bed in our lounge since Jan 16, and although we don't mind it would be much nicer for Tyler to be able to sit in a chair for his meals. We are still waiting to hear about our appeal to Chesnut Tree house children's hospice, although they help youngsters to 24 they must be ref'd pre 18. We have asked for the panel to relook at this but if they agree it has to go to another panel for the ok. This delay is a real shame as they have a small pool which could really benefit Tyler. Our MP has been great but there seems no way for all these different services to join up. We also had a call today to say that a council official needed to asses the house again with regard to suitable adaptions, I think that we have been assessed about 8 times now by various organisations. There has got to be surely a way to save time and money by taking a co-ordinated approach whilst using a big dose of common sense and realising that there is a young man in the middle of this . Although I will always do all I can to get Tyler the help that he needs by addressing these issues, I am also aware of when to say thank you. Tyler's physio is fantastic and we wanted his efforts to be recognised and so nominated him for employee of the month. We were thrilled when he won and it was lovely to go and meet the CEO of St Richards and be present when he got his award.    I know that the NHS is stretched to breaking point but genuinely think that some sound idea's could come from the service users which would save time and money. This can only be done by joining up processes as opposed to each team working in isolation. Whilst saying this most of the people that we have met within the NHS do their utmost to help their patients and just have certain constraints upon them. 

NHS Needs to join up its services to support our most vunerable young people and become more cost : Some of our journey to date

NHS Needs to join up its services to support our most vunerable young people and become more cost : Some of our journey to date: In 2010 we were your normal average family, Tyler had been suffering from some headaches so we went for what we thought was a rou...

Some of our journey to date

In 2010 we were your normal average family, Tyler had been suffering from some headaches so we went for what we thought was a routine hospital appt. Following a MRI scan we were asked to go to the children's ward, when the consultant met us at the door we knew that life would never be the same again. Tyler had a brain tumour and within half an hour we were in a ambulance on our way to Southampton hospital, he needed life saving surgery which would take place the next day. There are no words to explain how as a parent you feel when you are told that your child's life is at risk.This operation caused many physical difficulties including visual and mobility . Tyler spent much of that year in Chichester and Southampton hospital undergoing many more operations and trying to learn to walk again. We have seen the best and the worst of the NHS and when Tyler was first admitted they were at their best it worked like a well oiled machine and saved his life, it was after the crisis that things didn't always work as well. Tyler himself was amazing and through himself into his recovery determined that he would walk again , this was despite having to lie with the fact  that due to tumour location it was too risky to remove it all. When we came home we rescued Tyler's beloved Charlie who helped him learn to walk again. With Charlie and lots of physio and hydro therapy (often stopping to be sick) Tyler became virtually mobile again. He felt passionately that the symptoms of brain tumours needed to be highlighted and worked with Brain Tumour UK to help promote the symptoms. Many GP's will not see a brain tumour in a child in their career, in Tyler's case the symptoms were severe headaches and vomiting, particularly overnight. We were lucky and got Tyler diagnosed quickly this is not the case with all children. Tyler undertook radio interviews and gave talks even representing Brain Tumour UK at children in need. The hope at this point was that the tumour would do nothing and that there would be some return to normal life. Unfortunately this wasn't the case and the tumour grew meaning that Tyler had to have intense radiotherapy. This was one of the first encounters that we had with red tape. Southampton felt that Tyler would best be treated in America and put the case through to NHS England, this was declined as Tyler had turned 16. We faced the awful decision of trying to fight this which was going to take a lot of time whilst he was getting ill or having the best treatment at Ston hospital. In the end we all decided that it was in Tyler's best interests to have the Treatment asap and this was don in Jan/Feb 14. More to follow  

How things could be improved

I have been giving a great deal of thought to the provision of NHS Services , it is easy to accept that there is only a certain amount of money to go around, but huge savings could be achieved simply by joining up some services. For example we have had the house assesses by to name a few hospital OT's, Rehab Ot's, Community Ot's,  nurses,different departments of the council and we now need a further assessment from wheelchair services. It would make a huge amount of sense if one assessment was undertaken which covered the needs of all service providers which could be updated as circumstances change. This would save a huge amount of official time and money , if there is no more money then it has to be thought about as to how to make the best use of what there is. By having one report it would also reduce waiting times and the provision of equipment thus benefitting all patients and staff. You don't realise just how complicated accessing services can be until you need them and there is no guide to help you do this . A guide covering services could explain processes, waiting times and alternative avenues of help, this would reduce frustration and help to manage peoples expectations. It would also be hugely beneficial to put families in touch with others who have been through similar experiences , there is a huge sense of isolation which can be helped by being in touch with others who understand.

Plan of action to get people to listen

Tyler needs several things to allow him a return to college hopefully after the next risky operation.
He needs house adaptions, these apparently can take a year from now, he also needs the already mentioned chair so that we can loose the bed in the lounge, he most definitely needs a powered wheelchair with proper ramps. The temporary ramps that they have give are simply too heavy for me to lift. When I mentioned this they said that permanent ones would come with the DSG grant which is a year away!   I have spent the afternoon trying to get hold of our GP and any of the OT's involved in his case , they were all too busy to return my calls. The next port of call had to be to the MP who does his best to help, but this needs some joined up thinking at a higher level to get this resolved, my next wonder is how do  I get some one high enough up to listen. Needless to say I have already sent messages to Theresa May and Jeremy Hunt unsurprisingly I have had no replies. I also have on my list of jobs to chase the local childrens hospice to see if they will offer him any help.
In addition to all of this Tyler needs appts at Southampton for 6 different clinics, Surgery,oncology,radiology,visual,MRI,endocrine.  and narcolepsy. The drive to Southampton can take up to 2 hours and we then have to pay an extortionate amount of money on parking. It is hugely annoying that families in our position have to spend thousands of pounds in parking. Having a child in hospital is very expensive and in most cases at least one parent has give up work, so at the worst times of their lives they are having to think about money.
I need people to highlight the issues that we are facing far and wide not only for Tyler's sake but for all those other young people that are unfortunate enough to turn 18 and still be ill. politicians have to join these services up, it is false economy to not help these young people and leave them to rot on benefits. I wonder how much I can achieve before we go into hospital on the 14th, I wonder if it needs to go to the press before any one will listen. I will share more of Tyler's journey over the next few days which will highlight issues that we have faced, things like one day being on a children's ward and the next on a geriatric as there was no where else to go.
We need to get the wheelchair and lounge chair as a priority if anyone has any ideas please share them and share this blog as far and wide as possible. I had to do this or go grey I think !!!!

Why is it so hard to get the help that is needed for seriosuly ill young people

My son has been fighting a brain tumour for 7 years and we have seen the best and the worst of the NHS. It has been a constant struggle to ensure that he gets the help and support that he needs, this has become my full time job as we battle the red tape that surrounds services. Today has been a particularly frustrating day with a phone call  from a professional who clearly didn't give a damn about paitents but was only concerned with being in acceptable time frames. But let me explain a little my son was diagnosed with a brain tumour at the age of 12 and to date has had 25 operations and radiotherapy. Due to the location of the tumour we were advised that is was too risky to remove it all and unfortunately the tumour bled in Jan 16 causing in effect a stroke. This left him with significant disabilities, including mobility and visual ones . We were initially told to be prepared to loose him and were just so grateful that he came through we didn't really appreciate the damage that the bleed had caused. After weeks in hospital it was decided that he would come home to a bed in the lounge, ideally he would have gone into rehab but as he would have been the youngest person by about 50 years it was agreed that he would be a day patient and I would take him in. As I always stayed with Tyler in hospital I was happy to do this but it did mean that I would not be able to work and become his full time carer. It was at this point we suddenly realised that we were pretty much on our own and the battle for help began. As Tyler regained some sensation he developed an awful Parkinsons type tremor which meant he couldn't write and his mobility became much worse, due to this he has been unable to attend college although we do hope he will go back. Over the next few weeks I will share some of Tyler's journey as he faces more surgery and the challenges that we have to face. Over a year on from the stroke we still have the bed in the lounge and are waiting on a chair that will offer sufficient support to allow Tyler to actually sit up and have a meal. We have been waiting for this for some time due to red tape and complicated funding processes, so at present Tyler has to continue on his bed. To date we have been assessed by hospital occupational therapists, community ones, council officials and now we need further wheelchair assessments. Each of these teams have waiting lists   and don't link up, this seems a huge waste of official time surely one report could be shared by all. Tyler has been trying an electric wheelchair at the hospital and we thought that it was only a matter of time before he could get one. Apparentaly this is not the case he has to have this extra assessment and may not qualify anyway. Despite the fact that he is housebound he may not meet the criteria , this is due to the fact that being a detrmined young man he manages to move around the house with some aids taking several falls but wanting to be as independant as possible .When I tried to explain that Tyler was a teen who had been through so much I was cut short and told processes had to be followed but why do the take so long. We have been passed from pillar to post and as ateen who has gone from childrens to adult services fallen through eveyr gap in provison that there is. All this was being dealt with whyn we found that Tyler's tumour had grown and the op that they always said was too risky had to be done or he would go onto palliative care. Being the brave ,amazing and inspirational young man that he is he quickly opted for surgery, this meant many more weeks in hospital and further disabilities. Everywhere that we have tried for help we have been turned away from , too old for a childrens hospice, too young for an adults, out of area for the only teen one and so it goes on. I spend my life fighting to get him some chance of a indepdant live because he has fought so hard for one. Tyler has done so much for other children setting up his own Chairty Tyler's Trust . He always thinks of others first , even delayng his brain surgery to host a fun day for the families that the Trust support. We can not be the only ones to face these issues and they have to be highlighted and dealt with