The mother of a life-limited three-year-old from Bolton has praised the nurses at leading UK children’s disability charity Newlife Foundation, saying: “It’s good to know they are there in times of crisis.”
Jodie Settle from Bolton has multiple and complex disabilities which means she must be positioned at an angle at all times. After months of battling for appropriate seating for her daughter to relax in at home, mum Kate turned to leading UK children’s disability charity Newlife Foundation for help – and the right equipment was delivered within days.
Kate said: “For more than a year, Jodie was sitting and sleeping in an ordinary bean bag because of her health needs; she has to be positioned at an angle of no less than 40 degrees. Our local statutory services have now provided us with a hospital bed for Jodie, but we still couldn’t get any help with special seating.
“I started researching disability charities and support organisations and found Newlife – and thank heaven I did. I gave the Newlife Nurse Helpline a call and spoke to one of their wonderful nurses. I told her all about Jodie – and a few days later a specialist PPod seat was delivered to our home.”
She added: “Without Newlife’s help – and knowing they’re there in times of crisis – I really don’t know to whom I could have turned for help. We are so very grateful.”
Jodie has symptoms akin to Cerebral Palsy, oxygen is administered overnight and she also has uncontrolled epilepsy and severe reflux, so she cannot lie flat in case she chokes.
The PPod provides moulded seating to offer appropriate postural support. Kate added: “Jodie is happiest when she is in her PPod. Having this seating has also made it easier for my other children to play and interact with her, so she can play a bigger part in family life.
“People assume that if you have a child with a disability you automatically get all the help you need. The reality is very different and I am not the only parent to have struggled to get equipment support. Because Jodie is so poorly we have a lot of hospital appointments and I talk to other parents who are in a similar situation. So I tell them all about Newlife.”
Jodie’s PPod was provided through Newlife Foundation’s Just Can’t Wait (JCW) service, which provides equipment loans to families of terminally ill and life limited children. JCW is a palliative needs emergency equipment loan service providing wheelchairs, buggies, specialist beds, seating and portable hoists direct to families’ homes within 72 hours.
All Newlife services can be accessed through the Newlife Nurse Helpline – 0800 902 0095; email firstname.lastname@example.org. The team of nurses offers information and support on disability issues and signposts parents and professionals to its own range of practical services, all of which are free of charge.
Kate said: “The nurses are brilliant. If they can’t provide you with specific information they can refer you to someone who can. And, most importantly, they have been there for me when I just need someone to talk to who understands Jodie’s health needs.”
Newlife was able to respond to Jodie’s needs as a matter of urgency, but the charity is experiencing huge demands on its services as statutory budgets continue to be tightened. In addition to Just Can’t Wait, the charity has funded 240 Equipment Grants totalling £357,249 for under-19s in Lancashire.
In response to this, Newlife is increasingly turning to ‘local heroes’ to help fund equipment for children in individual counties. Newlife guarantees that 100 per cent of all monies donated or fundraised in Lancashire can be ring-fenced to specifically provide equipment for disabled and terminally ill children within the county.”
If you would like to donate or raise money to help disabled and terminally ill children in Lancashire, the Newlife Community Fundraising Team can be contacted on freephone 0800 988 4640. Any individual or organisation thinking of running a fundraising event is asked to contact the team, who can offer support and guidance.
Pictured: Jodie with mum Kate.