Wednesday 30 August 2017
NHS Needs to join up its services to support our most vunerable young people and become more cost : Some Progress on Fundraising , but trying to forge...
NHS Needs to join up its services to support our most vunerable young people and become more cost : Some Progress on Fundraising , but trying to forge...: What a busy week. Where to start , I think that I must begin with the fact that I had a lovely meeting with Stuart McGinley from ...
Some Progress on Fundraising , but trying to forget that we are Southampton bound next week .
What a busy week.
Where to start , I think that I must begin with the fact that I had a lovely meeting with Stuart McGinley from Spirit FM. I had got up early to sort the house out and some up with a chocolate cake .
The only slight issue was that I left it on the side and Misty obviously took a fancy to it , she didn't even leave a crumb, no wonder she is a tad on the large size !!!
We came up with , well I say we in reality it was more Stuart than me , some fantastic ideas. The first one is going to be a Go Green Day , firms that take part may well get a visit from Spirit/Observor and or Tyler or maybe all 3!!! The day could be made into a really fun way to raise some money. Staff could dress up in green outfits, Shrek and Princess Fiona come to mind, or simply wear green. Green cakes could be made, green hair would be fab, I really think that Stuart and Stephen need to go green at some point !!! I would imagine that could raise a huge amount of money .
Then on the 21st Oct Tony , our brave optician starts his 10 x 10k race's in 10 days to celebrate his 50th birthday . Please do sponsor him for undertaking this immense task, you can do this either in the shop(Barnham Opticians) or via the fund raising link.
One of Tony's 10 k's will be on Saturday 28th when the lovely ladies from the Appledrum Centre are hosting an event at the Barnham Community Hall. I am really looking forward to it and meeting them all in person, please keep the date and do come along and join us .
This is followed closely by Tony's last 10k on Monday 30th Oct , the lovely Chris from the Windmill cafe is opening specially so that he can finish there. We hope to make a bit of an event of it, Spirit and the Observor will also be there so please do come along and say hello.
More details to follow as I have them, there is also going to be a quiz on 21st November, so lots of dates to keep.
More info and pics to follow.
Tyler's Trust Fun Day
We are now nearly at our biggest event of the year , this is an amazing day that we put on for the families that we support. It allows a break from hospital and a change to be with other families in similar positions. Every family receives a free 10x8 photo, after being pampered , they can have their hair,nails and make up done if they wish. This can then be followed up by vintage car rides, food, entertainment , games and activities. There is even a sneaky glass of Pimm to be had for the adults .
It does mean however that my head is spinning whilst I am trying to keep everything organised !! I have just had to go out and buy a new diary as I made such a mess of the old one.
No time to think
It may be good to be so busy as at least it stops me having to think too much. We are going back to Southampton for review next week. It sometimes hits me like a sledge hammer that in the build up to the last fun day we didn't know that Tyler was going to come through his next lot of surgery.
My amazing son refused to have this surgery until after the fun day as he didn't want to let any of the children/families down. It was the most incredible day and something that Tyler simply had to do, however I would be lying if I said that it easy.
I sometimes want to scream and shout at how unfair life is , was it not bad enough that Tyler had to have a stroke in Jan 16, what sort of god then allows his brain tumour to grow .
I will never forget the conversation with the consultant when he told us that Tyler had the choice of surgery that could kill him or palliative care. We had always been told that the surgery was too risky but our wonderful new consultant said that in view of Tyler's age and his positive attitude he would do the surgery if that was what Tyler wanted.
When we got home Tyler simply said I'm not done yet . I don't have the words to describe just how painful that time was, and I honestly don't think that I will ever be the same person again.
However I feel it is an honour and a privilege to have been given such an amazing son, and I am incredibly proud to be part of his journey.
If that sounded depressing I apologise but I think that I needed to say it , and also thank my family and friends who kept me going .
Some lovely news to finish on , I had a call from Dr Ridley of Bognor Rotary club and he came round with an amazing donation of £1000. Simply incredible , thank you guys, such huge help. There is still a long way to go but if everyone could please keep sharing and supporting I know that we will get there.
As ever if you would like anymore information please do feel free to get in touch :
janice.ellis2@btinternet.com
Monday 21 August 2017
WHY ARE THINGS SO DIFFICULT !!!!
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
NHS Needs to join up its services to support our most vunerable young people and become more cost : NHS Needs to join up its services to support our m...
NHS Needs to join up its services to support our most vunerable young people and become more cost : NHS Needs to join up its services to support our m...: NHS Needs to join up its services to support our most vunerable young people and become more cost : Trying to regain control of my spinning...
Wednesday 16 August 2017
NHS Needs to join up its services to support our most vunerable young people and become more cost : Trying to regain control of my spinning head!!!
NHS Needs to join up its services to support our most vunerable young people and become more cost : Trying to regain control of my spinning head!!!: Amazing,wonderful,frustrating and possibly productive couple of weeks!!! Where to start A to do list ! Maybe wr...
Trying to regain control of my spinning head!!!
Amazing,wonderful,frustrating and possibly productive couple of weeks!!!
Where to start
A to do list !
Maybe writing this will stop my head from spinning a little if I try to get it down on paper , One of my mid year resolutions is to start and use a proper to do list , I used to swear by these at work and I believe that it may stop some of the spinning and waking up thinking I must do that !There fore I am going to get a nice book and set the items up as urgent,this week and when there is time .I do wonder how long it will take for the last column to be cleared though. Knowing me I will have to be very careful not to spend more time writing the list than actually getting on with things.
However enough about that , I believe that I must start with our visit to Spirit FM. I went over with Tyler and friend of ours Lorraine, once there we met Stephen P from the Observor and Simon & Stuart from Spirit.
I was a little nervous anyway ,but Stuart met us with a horn in one hand and a bell in the other, with a big grin on his face ,saying he thought that we could have a bit of fun.
I was a little nervous anyway ,but Stuart met us with a horn in one hand and a bell in the other, with a big grin on his face ,saying he thought that we could have a bit of fun.
With my heart rate now definitely on the increase we proceeded to the studio to record more about the 'Together For Tyler Campaign'. It soon became apparent that the horn and bell were for a quiz, Tyler paired up with Simon and quickly nabbed the horn , leaving Stephen and I with the bell. Scared that I was about to look like a real dumbo I was quite relieved to be able to answer some of the questions . It was very close but you will have to listen to the programme for the results and questions . Although I will share one question as we all got it wrong, all questions related to 3rd August , What was Madonna's first number one hit - no cheating .
Fund raising
So the next few weeks are going to be all about trying to reach the first the £20,000 to instruct the surveyor and then £30,00- in total so that the council will release the grant. Everyone has been great but it feels like a mountain to climb at the moment. The lovely Patricia arranged a charity bridge afternoon and raised an amazing appx £800. It was lovely to see so many people there especially Di Levantine who has been with us throughout our journey . There was a really lovely atmosphere with a proper tea with cut cucumber sandwiches and home made cakes , there were even table clothes brought out .
If anyone has any idea's on fund raising please do let me know , it could be a coffee morning, a quiz, an auction silent or otherwise, dress in green anything really. There is a planning meeting next week with Spirit and the Observor so please let any of us know your ideas.
Some people seem to raise funds with out any problem at all, I think it is a case of being able to reach people, so even if you cant help via fund raising or donation just sharing my blog will help . I also have a letter that can be sent to potential supporters , please let me know if you would be help to help in this way.
A very brave man
I received a call yesterday from the lovely Mandy at our local opticians in Barnham . I was amazed to hear that her husband Tony who turns 50 in October is going to run 10 x10k races in 10 days to support Tyler. I was gobsmacked to say the least . I couldn't even do half a one!! You can sponsor this courageous man either in the shop or via the fund raising link attached at the bottom of this . Thee are also links on the Spirit and Observor Sites. Please lets get behind this amazing local man and show him some support. For donations of over £5 you get entered into a draw for a wonderful hamper which includes a pair of prescription(or non) sunglasses!.Its worth donating simply to get a chance to win the hamper.
It has made me think that it is time to get fit and I may even start to try and run with Mandy who is more at my level , no laughing anyone , I may surprise you yet .
Acceptance
I think that I have been trying to simply concentrate on the practical things that I can do , however more and more often I am having sleepless nights , Never in a million years do you dream that something so awful as has happened to Tyler will happen to your child. Its something that you read about in the paper or you know a friend of a friend who has been through it .
When I reflect on the last 18 months I can almost feel a panic attack coming on . I guess the answer is to not think about it , but somehow deep down I know that it has to be accepted that life is as it is . I thought that some counselling might be an idea but its almost impossible to get to them and they don't do home visits . Not only is there very limited support for Tyler but there is barely any for carers either. Whoever organises the support seems to forget that it can be very difficult for carers to get out . Sometimes all you want is someone to listen and help you get rid of all the angst . It is very hard to see what path Tyler will now follow but equally my life is not what I thought it would be. That is not to moan as I am very grateful and honoured to be there for Tyler, its just to say its not what I thought I would be doing .
Whilst all of this has been going on we have been extremely busy with the Trust and had a wonderful weekend at Sainsburys. Thank you to everyone for making us feel so comfortable and for the amazing donations that we received .
As ever if you can help or have any ideas please do get in touch :
janice.ellis2@btinternet.com 01243 553280
https://www.gofundme.com/Tylersaccomodation
https://www.spiritfm.net/features/together-for-tyler/full-story.php
https://janiceell.blogspot.co.uk/
http://www.bognor.co.uk/news/video-together-for-tyler-campaign-launched-1-8085080
Thursday 3 August 2017
NHS Needs to join up its services to support our most vunerable young people and become more cost : WHAT A WEEK, THINGS FEEL A LITTLE SURREAL AT PRESE...
NHS Needs to join up its services to support our most vunerable young people and become more cost : WHAT A WEEK, THINGS FEEL A LITTLE SURREAL AT PRESE...: One of the most unusual weeks of my life !!! It has been a little while since my last blog and I almost don't know where to s...
WHAT A WEEK, THINGS FEEL A LITTLE SURREAL AT PRESENT!!!!
One of the most unusual weeks of my life !!!
It has been a little while since my last blog and I almost don't know where to start .
As many of you know we have been trying to fund raise for Tyler and it felt like an impossible task to reach £30.000. I have known for a little while that the Observor Spirit FM might be getting on board to help us. It almost felt to good to be true though, and it didn't feel real until Stuart McGinley, Stephen Pickthall, Robyn and Justin turned up to film. That was over a week ago and I have not been able to say anything until the launch today . I've been like a cat on a hot tin roof.!!!!
But I get ahead of myself so much else has happened .
Just before we went on leave I sat on my first children's board, I felt extremely honoured to have been asked. It certainly helped clarify some of the issues that local hospitals are facing . It was also a fantastic opportunity to highlight the issues that young people face around transition . I must have said something right because the main topic of the next meeting is Transition !!! I just hope that I didn't take up too much of the meeting !!!
I still find some things difficult to understand though, I have been trying to contact Tyler's key worker for weeks after a cancelled appt. I have sent 3 texts , each of which comes back out of office, I will contact you tomorrow. The current one says that she is now on leave until 8th August. This is despite promising to ring me on 9th June , I really need to talk to her and apart from anything arrange a swim for Tyler. I think its simply unacceptable that someone can promise to ring in June and we are still waiting in August. I have now had to email the office manager , but I am really not holding my breath any more . I am not sure where to go when professionals simply do not do what they promise to , Quality Care Commission??
Holidays
Well we didn't quite get the weather that we hoped for but we still had a lovely break at Paul's Fund/The Old Bakery . This is a wonderful B&B run by the amazing David and Pippa, it runs jointly as a B&B plus a charity.
David and Pippa sadly lost their son Paul to a brain tumour when he was not much older than Tyler. Instead of giving in to grief they set up Paul's Fund in his honour . This allows families in positions similar to us the opportunity to take a break that they might not otherwise get.
They offer a warm welcome and make you feel completely at home, plus there are wonderful cooked breakfasts!
Before we set off I wondered how we would fill our time, I also wanted to find a treat for Ben and Tyler . We managed to keep this as a surprise and you can imagine Tyler's face when he found out he was going to swim with a Sea Lion. Tyler is much better in water than he is on land . It was fantastic to see both my boys having a ride with the sea lions, the sun came out for some of the day and it is certainly one of those days you will never forget . It was also lovely to have a walk around some of the steeper bits of the park with Ben, even if he did get a bit closer to the wolves that he should have done .
We also had a brilliant day at Westward Ho, Tyler had a go at crazy golf and even though he fell over a few times he just picked himself up and carried on . To top it off he even had a go at go karting and had a go in the amusements. This may not sound much and it took a huge amount of effort, but it showed that as a family we can have a day out that everyone enjoys . Especially when they serve the biggest ice creams .
This is not to say that we don't have to plan things very carefully and thoughtfully but it does show that life can be fun. I don't think there are enough accessible activities for disabled people and that this needs to be addressed.
Another trip that we had was to the Cinema, Cine world have always helped us out enormously , this was not the case with the local cinema. Our film was due to start at 1.30pm so we turned up at 1.20pm to allow Tyler time to get to his seat . Unfortunately the doors were locked and it was pouring with ran. Tyler can not stand at any lenght at the best of times, I motioned to a member of staff to ask if he could sit inside. She advised that due to health and safety he couldn't, but she would try to find him a chair for him to use on the pavement. Naturally he didn't wan to do this in the rain.
When the doors finally opened , 99% of the Que pushed past us and rushed for the ticket Que, nearly knocking us over. One little lad saved the day and held the door open for us, I wish I knew his name to let him know how much his little act of kindness meant.
We had booked premier seats to allow Tyler extra room, unfortunately they were just higher up meaning more stairs! The film was OK but I would not go back to that cinema under any circumstances, it will be Cineworld from now on as they clearly think of their disabled customers .
We also ate loads , relaxed and simply spent time as a family which was lovely .
So back to reality .
It had been great having no Internet or mobile phones, I really must try to overcome this phobia.
A busy week ensued but all really positive, a lovely meeting with Katie in Salisbury's as they have picked Tyler's Trust as their Charity of the year. We won the vote overwhelmingly which was fantastic as it was voted for by local people, so thank you to each and every person who voted and Trish for nominating us .
We Will be there for a lot of next weekend so please do pop along and say hello.
Filming
There was then the filming with Spirit which was both nerve racking and exciting at the same time . I think some of our neighbours wondered what was going on .
We agreed that we would go over to the studios the following week for Tyler to take part in a show with Stuart. On arrival Stuart had a grin on his face and a horn in one hand and a bell in the other !!! My nerves increased slightly!!
We found out that we were doing a quiz, the teams were Stephen and I v Tyler and Simon, you will have to listen to Spirit to see who won. It was actually really good fun , I just hope that I didn't come across as too nervous .
Following this I had my birthday celebrations as wait for it I turned 50!!!!!! I guess its just a number but still feel old . I really really need to find a way to get fit , I think what I need is a makeover.
What was lovely though was that my sister and family came down to celebrate with us. I was treated to a day shopping a a lovely meal out at Casa Brassila, although we didn't realise that it was a Samba party and that there would be dancers etc
I am also thrilled to be having my lovely niece and nephew staying next week. We just don't get to see enough of them, they may have to help out at Salisbury's though.
I had been feeling a bit down prior to all of this and wondering how on earth I was going to sort things out for Tyler and us as a family . I actually started to miss being able to work, that is not a moan I am so grateful that I am able to be here for Tyler, its just not the future that I saw for either of us . I think that Spirit FM and the Observer came to the rescue just in time. I try not to expect things of anyone but sometimes it is the people that you least expect that step in and help, I love receiving the little messages of support so please keep them coming . We have a long way to go to get everything we need but this is am amazing start .
We are now also busy planning the Tyler's Trust fun day , so if you are one of our families or would like to help please do get in touch.
Finally are you able to support the Spirit/Observor Campaign to help us raise the £30,000 that we need . If you saw Tyler struggle trying to get out of the gate in his wheelchair you would realise that the sooner we have this done , the sooner that he can get on with his twenties.
He lost his Teens please help us give Tyler his Twenties , take part in Together for Tyler with Spirit and Observor. If we can we are happy to come along to event s.
The lovely Patricia has already arranged a bridge afternoon for next week which we will be popping into. You could have a go green day clothes or hair!!!! Host a quiz,coffee morning,table top,sponsored event, the list is endless.
This is the first time that Spirit and the Observor have worked together making this something really special so please join in.More information can be found at :
janice.ellis2@btinternet.com 01243 553280
https://janiceell.blogspot.co.uk/
http://www.bognor.co.uk/news/video-together-for-tyler-campaign-launched-1-8085080
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