children walking in park
More about Children’s Palliative Care Pathway
March 2, 2017

Triathlon news

Triathlon Oscar Maclean

We are grateful to the 3D Events and Jersey Triathlon for supporting us as their charity for the third year in a row! Last year we saw experienced athletes and novices battling rough sea waters and cycling through rain.  Lets hope this year the sun will shine, while the air temperature is not too hot.  Please show your support and swim, cycle or run, or just come on the day and help us cheering all the participants!

We’ve had a busy few months continuing to work closely with all the parties committed to developing the framework of Children’s Palliative Care.  The next workshop involving the Oscar Maclean Foundation in its role of the advisory group member will take place this July and will focus on end of life stage.   All the parties are 100% committed with their time and resources to getting the right pathway of support for affected families through this devastating stage of their lives.  Feedback on the workshop and its findings will be provided in our next newsletter but it is clear there is a rapidly growing need in Parent Partnership Keyworkers across charities and organisations and more charities are expressing interest in funding similar roles.

We have asked Renee de la Haye to put together some more information for our supporters about her background prior to starting work for the Oscar Maclean Foundation, as well as her daily workload.  This is what Renee says:

“I have had a varied career in health and community work for over 30 years working both in Jersey, the UK and overseas. I have worked in the hospital here in Jersey, and in the UK, working in general medicine and oncology. For the last 16 years I have been working in London as a health visitor, more recently in Tower Hamlets for the last seven years with the Family Nurse Partnership. This is an early primary intervention service working with first time parents under 19 years old. In this post I worked with a case load of 20 families, from early pregnancy until their child was two. In this role we were able to develop a therapeutic and supportive relationship, while providing education and health information, with the families over time.

Since starting in post in September, it has been an exciting and positive time. My post was set up to support families with long term health conditions. Just as I was starting in post, Family Nursing and Homecare (FNHC) collaborated with the States of Jersey to develop a Children’s Palliative Care Pathway. The Children’s Palliative Care Pathway has been developed to support families of children aged 0-18 who have a life limiting or life threating health condition. This has been developed in line with the UK national guidelines laid out by ‘Together for short lives’.  Children’s Palliative care is a holistic approach to care, from the point of diagnosis or recognition of life-limiting or life threatening conditions. It embraces physical, emotional, social and spiritual elements and focuses on the enhancement of the quality of life for the child or young person and their family. The pathway encourages multi-agency working and communication, with each child on the pathway being allocated a lead professional and a named nurse who work together to assess and plan in collaboration with the family. The keyworker role involves providing information, emotional and practical support and helping families to coordinate the different services supporting them. Ultimately it is important that a family can contact their keyworker with any new challenges they face so that the keyworker can either provide or find the answer. The role necessitates building effective working relationships with families and professionals as means of understanding the current needs of the children and their family. I am currently working with 12 children (with a range of conditions and ages) and their families.”

And we have had our first anonymised feedback from a family who has received Renee’s support: “Our keyworker has been amazing, she has really helped us as a family, she is one of the nicest people I’ve met and always goes the extra mile. She provides us with so much support, it’s really nice to have her here to help us. Our child is 2 1/2 so we had almost 2 years before our keyworker started, I had to deal with everything myself and struggled juggling it all but now we have a keyworker she helps me, she’s come along to appointments to support me if I’ve been anxious and needed support. It’s just nice to have someone there to talk to when sometimes times get tough. Our child has recently started nursery I really do feel our keyworker has helped this run smoothly working closely with family nursing and nursery to ensure their needs are met. As a family we are extremely thankful.

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