National Institute for Health and Clinical Excellence (NICE)
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Support before, during and after

Blog posted by: Anne Harris, Director of Care Services, Rainbow Trust Children’s Charity, 12 September 2017.

Anne tells us why it is important to support families through all stages of grief.

There is no right or wrong way to feel when your child is approaching the end of their life.

Some families experience shock, others show signs of denial, anger or numbness. And there will be some who feel none of these.

We must offer support to all parents and carers who are facing grief. The loss is something families often describe as ‘catastrophic’, saying that it stays with them for the rest of their lives.

I am pleased the new NICE quality standard recognises the importance of grief support.

Rainbow Trust Children’s Charity provides emotional and practical support to families where a child has a life threatening or terminal condition.

In our experience, families often start grieving long before the child has died. It happens as they come to terms with the fact that their child will not live the ‘normal’ life they had anticipated.

Jayne accessed Rainbow Trust support for a number of years when both her daughters were diagnosed with Late Infantile Batten Disease, a rare and fatal neurodegenerative disorder.

Jayne’s daughter Ashleigh died in 2014, and her daughter Alisha died in 2016, both aged 10.

She says: “Things are so different now. My whole life revolved around Ashleigh and Alisha and the people that I used to see regularly who were there for them. They all stopped coming so I asked Marlene [her Family Support Worker], “When will you stop coming?” Thankfully, her reply was, “We’ll be here as long as you want us,” which was such a relief because I need her more than ever now. I see her about once every four weeks and she’s the only person I feel I can talk to about my grief. She listens and when I feel I’m going mad, she reassures me that everything I’m feeling is a normal reaction to what’s happened.”

Families can find a sensitive conversation about their support options helpful. The discussion is best led by someone they know and trust, and it should allow families time to consider what they would find useful.

For families supported by Rainbow Trust, their options may include continued visits from their Family Support Worker, the use of local bereavement services, the creation of a memory box, and participation in a local Tribute day.

 

Channel website: https://www.nice.org.uk/

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