HEALTH service red tape has been criticised by the Barnham mother of a teenager with a brain tumour.
Jan Ellis said she had spent seven years struggling to ensure her son, Tyler Murphy, received the help and support he needed.
Tyler, 19, has been battling a brain tumour and used his illness as inspiration to set up the Tyler’s Trust charity to provide gift boxes for children in hospital. But Jan said: “I spend my life fighting to get him some chance of an independent life because he has fought so hard for one.
“We have been passed from pillar to post and, as a teen who has gone from children’s to adult services, fallen through every gap in provision that there is.
“All this was being dealt with when 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 on to 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 children’s hospice, too young for an adult’s, out of area for the only teen one and so it goes on.”
Tyler was diagnosed with the tumour at the age of 12. He has had 25 operations and radiotherapy – with another operation due.
Only some of the tumour could be removed and the remainder bled in January, 2016, to effectively cause a stroke.
“This left him with significant disabilities, including mobility and visual ones,” said Jan. “We were initially told to be prepared to lose him and were just so grateful that he came through. We didn’t really appreciate the damage the bleed had caused.
“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. It was at this point we suddenly realised we were pretty much on our own and the battle for help began.”
Tyler developed a Parkinson’s-type tremor after his stroke and had tried an electric wheelchair in hospital. But getting one for him to use at home seemed never-ending, said Jan.
“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? 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 they take so long?
A THOUSAND gifts of kindness is the next goal of a Barnham teenager’s charity.
Tyler’s Trust is closing in on the target of boxes packed with toys and practical items since it was set up by Tyler Murphy just over three years ago.
Tyler, 19, began to put together the presents after his experience being treated for a brain tumour made him aware of a lack of help for young patients.
The trust’s aim is to provide each child with a unique and personalised gift box of presents such as balloons, bandanas, head scarf, teddy bear, mug, beaker, journal, pens, sweets and a voucher.
The good cause has grown into a registered charity backed by DJ and television star Fearne Cotton, former Southampton and Wales keeper Paul Jones and Nick Herbert, the MP for Arundel and South Downs.
Janice Ellis, Tyler’s mum, said: “We have given out 250 gift boxes to young patients like Tyler as well as double that number to their parents and siblings, to take the total up to as many as 750.
“When we first had to go in an ambulance to Southampton with Tyler, we couldn’t even clean our teeth. It’s so hard for the families who find themselves in the position we did. We want parents in that situation now to at least be able to wash and do their teeth.
“We’ve expanded the area we cover to the Chichester, Worthing, Portsmouth and Southampton hospital regions. We will not get any bigger but we want to increase the service we offer to local families by putting items in parents’ rooms at the hospitals.
“It’s very expensive for the families when children are seriously ill. It means they are treated at Southampton from here and that’s a lot of money for petrol and parking with all the frequent visits needed.”
Trust treasurer Michelle Dodd said: “I don’t think people can believe what goes into a box. They are quite large and there’s a lot of things we can get into them.”
Toys, baby clothes and cot sheets are among the goods starting to be supplied to the hospitals by the trust.
It was in 2010 that Tyler started suffering severe headaches and sickness at night. A scan revealed he had a brain tumour and he was instantly referred to hospital in Southampton. A large amount of the tumour was removed.
He continues to undergo treatment but his devotion to the trust has never wavered.
Jackie said: “Tyler has been really ill but the trust is so important to him. He had to have very risky surgery last year but he delayed it until after our first family fun day so he could be there.”