APPG: November 2012

Left to right: Fabian Hamilton MP, Lizzie Chambers from Together for Short Lives, Amy-Claire Davies, young person with experience, Simon Chapman from NCPC & Heather Richardson from Help the Hospices

 

Seamless Care? Moving through the care and support system as a young person with palliative care needs

 

The All Party Parliamentary Group (APPG) on Hospice & Palliative Care met on the 27th November for a lively discussion of the journey of young people with palliative care needs from children’s to adult’s health and care services.

The discussion was framed and informed by headline findings from a three-year research project on transition launched at the meeting. There was a consensus that urgent action by decision-makers and providers alike was needed to support the growing number of young people living longer with life-limiting/threatening conditions and, as a result, transitioning from childrens to adult services.

The APPG heard how too often the journey is disjointed leaving young people and their families feeling lost, confused and unsupported. Amy-Claire Davies, a 18-year-old with palliative care needs, spoke eloquently about her good and bad experiences of her transition with undiagnosed complex multi system disease. She said:

There are so many services operating so very differently, different ages and criteria. The definition of palliative care in a young person’s world is very different than that in an adult world, it does not have the same meaning and can to a degree cause some confusion”

The group heard examples of partnership working between children’s and adult’s services, from Richard House Children’s Hospice and the Lane Fox Respiratory Unit at St Thomas’, to provide solutions.

Baroness Ilora Finlay and Stuart Andrew MP responded to the speakers, both emphasising their personal experiences of young people with life-limiting/ threatening conditions wanting to compress as much living into their lives as possible. Young people with health conditions, like other young adults, like to take risks. This might be jumping out of an aeroplane or having sex for the first time. The fact that they have a shorter period of time in which to do this meant that services needed to be, as Baroness Finlay put it, “risk aware not risk adverse.”

Chair of the APPG Fabian Hamilton MP concluded the meeting with the reflection that:

“It is only by responding to the changing landscape and working together that we will build a responsive, joined-up system of health and care that enables quality of life until the very end of life – whatever age that comes at.”

Click here to view the programme.

Click here to view the presentations and click here to view Amy-Claire Davies' speech.

Click here to view the key findings from the three-year research project on transition.