Children's Hospice Week - from May 23 to 29 - is an opportunity to introduce families and health professionals who don't already know about us to Newlife Foundation for Disabled Children and the range of practical services we offer to support palliative care:
Emergency Equipment Loans
This year the UK Children's Hospice Week campaign aims to ‘put families first' and improve public understanding of what life is really like for those caring for seriously ill children. The campaign wants to highlight how precious family time can be and how palliative care services provide vital support to thousands of families and help them treasure their time together.
Newlife is the UK's largest charity provider of specialist equipment for children with disabilities and terminal illness and its range of services reflect and complement the campaign's ambitions.
Newlife Lead Nurse Karen Dobson says: "When they are at the stage that their children are receiving palliative care, the last thing families need - or have the energy for - is to have to negotiate their way around the healthcare system to secure practical support. What parents want is for their children to be as comfortable and safe as possible and have the opportunity to make memories they can cherish forever."
To aid this process, Newlife works with families and health professionals to ensure vulnerable children get the right equipment at the right time - in the case of its Emergency Equipment Loans service, aiming to deliver specialist support within 72 hours of first contact. The service offers beds, wheelchairs, buggies, seating and portable hoists - and loans, of around six months, can be followed up with provision through Equipment Grants.
Parents Elizabeth and Lee, from Basingstoke in Hampshire, are able to make the most of the time they have left with their terminally ill daughter Keira Elmer, who has Alpers Syndrome, thanks to emergency provision of a specialist buggy.
They are able to create memories for themselves and their youngest daughter, Chloe, who is just 20-months-old.
Elizabeth said: "We were told Keira had been born with her condition, which is a progressive degenerative disease of the central nervous system. We hadn't heard of anything like this before, we were totally in shock. We found out there was no cure, that it kills more children than cancer but that no one has really heard of it. It was - and is - so devastating. We are just taking each day as it comes.
"The buggy has given me the freedom to take the girls out, knowing that Keira is comfy and safe. Because we aren't restricted we can get out to enjoy family time."
"For the loan, I had a conversation with nurses at Newlife on the Monday, it was approved on the Tuesday and delivered on the Thursday - along with a buggy-board for my youngest daughter, which they didn't have to include. As the pushchair can be rear or forward facing it means I can see Keira at all times and know if she is distressed. Chloe stands on the buggy board and talks to Keira while I push them."
In addition, Newlife funded a £2,665 Equipment Grant for a car seat to keep Keira fully supported, safe and in just the right position to help her breathing. Elizabeth said: "It's much more suitable for her needs and means she is safe. It also has a swivel base which makes it much easier for me to get Keira in and out of it.
"These two pieces of equipment are amazing, they mean we can go out to take photographs and videos of what we are doing and so Keira can enjoy the time she has left and we can have memories of her documented for when Chloe is older. Without the buggy or the car seat this wouldn't be possible."
It's not just provision of functional equipment that helps families make memories. Sometimes they need a little extra support in creating precious snapshots in time.
Newlife's Comfort Capsules contain items such as a soft blanket, supportive V-pillow, teddy bear, hand print maker, camera and digital photo frame as well as a portable DVD player. Put together by an expert team, the contents have been carefully chosen to help families make the most of their precious time with their child, creating special memories they can treasure forever.
One-year-old Patrick Langford from Nottingham has a condition that affects his brain, hearing and nervous system. Mum Vicky received a Comfort Capsule after her support worker contacted Newlife Foundation.
Vicky said: "The digital camera has been brilliant for us - we are trying to take as many pictures as possible. We also have quite a lot of hospital stays with Patrick so the DVD player has been really helpful at distracting him. He loves the blanket and the pillow - they have gone everywhere with him since we had them."
She added: "Patrick has a twin and they were able to use the handprint maker together. We didn't know that anything like Comfort Capsules existed but it is an absolutely fantastic service." WellChild Advance Paediatric Nurse Practitioner Aileen Crichton was also impressed. She said: "I would definitely use the service again as it did bring joy to the family and the lasting memories it helped to make were invaluable."
To access all of the charity's services, which are free of charge, call the Newlife Nurse Helpline on 0800 902 0095 (free from UK landlines and mobiles). Requests for the Comfort Capsule service must be made direct to Newlife Nurses by a healthcare professional on behalf of the family.
Alternatively, you can email email@example.com. For more information about Newlife and the range of services on offer, visit www.newlifecharity.co.uk.
Pictured: Keira in her car seat.
As mentioned before "time is of the essence" to stimulate Imogens brain while she is young, otherwise it will be too late. Now, with your help we are able to do this as often as possible in our home environment with our daughter. We will be forever grateful to Newlife for what you have done for us.
I love going in my sensory room and sometimes I am so relaxed that I fall asleep! My VI teacher has said that my eye sight has improved slightly, so thank you all so much for helping my eye sight improve.
Thank you so much for providing the stair climber for Mara - it makes it so much easier to get Mara up and downstairs safely and with dignity!