World's first hospice Long Term Ventilation Unit to open in 2017

Naomi House & Jacksplace to open world’s first hospice Long Term Ventilation (LTV) Unit.

Naomi House Children's Hospice front

There are increasing numbers of children and adults who have tracheostomy tubes.

A tracheostomy provides direct access to the trachea through a surgical opening in the neck.

Some of these children and adults also require invasive ventilation. This entails attaching the tracheostomy tube to a ventilator that essentially breathes for the child or adult. For children who are tracheostomy ventilated their journey from acute hospital wards to the comfort of their home can be long and challenging.

Newly ventilated children require a care package to be built around their needs. This may include nurses, carers, education providers and physical adjustments to the family home.

Everyone involved in a child’s care must be trained to deal with their unique set of needs.The average length of hospital stay from identification of the need for long term ventilation to discharge is seven to nine months.

During this time, a child will stay in the high dependency unit (HDU), paediatric intensive care or an acute setting within a ward of a major hospital. Family members who wish to visit will encounter the usual challenges faced when coming to a hospital: finding parking spaces, limited menu options and a lack of private areas.They will be faced by an acute ward, somewhere lacking the warmth and comfort of the family home.

Caring for a newly ventilated child in a hospital setting is extremely expensive, often as much as £1,000 per day.

Naomi House & Jacksplace know there is a better way. Our charity has the staff, the skills and will soon have the infrastructure to support our NHS colleagues in delivering a funded service in a better setting where children can receive care while awaiting the creation of their care package.

Families can benefit from a caring and supportive environment in which to spend quality time with their child. The LTV Unit will offer a step down from the care given at hospital, and allow parents to take on some of the care for their children, preparing them to provide this at home with reduced intervention from medical staff.

The new LTV Unit will enable hospice staff to reach out to families with medically vulnerable children earlier in their journey, introducing them to the range of services available at the hospice. We can then assist families by bringing healthcare agencies together to build appropriate and stable care packages more quickly.

The LTV Unit will be built above the hospices and will comprise two fully equipped children’s bedrooms, an emergency care room for breakdown in care packages, high quality accommodation for families and communal spaces for play and relaxation.

This service will transform the way in which newly ventilated children are cared for, and immediately improve not only their quality of life but that of their family too. The unit will open in the middle of 2017.

Lisa Leggett shares her memories of her daughter, Lacey, being tracheostomy ventilated.

Lacey returned from theatre looking pale yet rested. We were so scared. What if she hated it? What if she hated us for letting this happen? We sat by Lacey’s side and waited for her to wake. She stirred and smiled at us as she opened her big blue eyes. They spoke volumes. She was letting us know we had done the right thing. She was comfortable and I could kiss her beautiful face and see her amazing smile.

Lacey Leggett

Lacey had to be assessed and a care package agreed. This then this went out to tender. The nurses met Lacey and were trained in how to look after her.

We wasted four precious months in hospital waiting for this to be put in place. It was distracting and heart-breaking. We were only too aware how precious our time with Lacey was. “Being in hospital for so long was awful. Accommodation was not always available on the ward. We were run down, tired and stressed. We felt isolated from the world outside. I never left Lacey’s side. Dominic and I were like ships that passed in the night. Hospital is a lonely place when you are facing the biggest fight of your life; there’s no home cooked food, no comfy sofa, no peace and quiet. It’s those little things you miss the most. A Long Term Ventilation unit would have made a huge difference to us. Being able to make that step down from the hospital environment, to spend quality time together and learn how to look after Lacey in a more homely environment would have been so helpful.
Lacey ultimately spent more than nine months in hospital before returning to the family home in Andover. Lacey later received end of life care at Naomi House.

Watch Lacey's Story:

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