Our lives, our choices – not just for adults to decide
 |
Children and young people in Devon with life limiting or life threatening conditions are to be given more choice over their care.
This is thanks to a new approach by the NHS which allows children and young people to clearly record their wishes about their own care and treatment in a specially developed booklet.
The booklet prompts children and young people to think about and share the things in their life which are important to them. It also asks them to consider what they may wish to talk about if there is a risk their life may become limited.
It is part of a new charter that sets out the standard of care and support that children should expect from the people involved in their care.
Primary care trusts in Devon (NHS Devon, NHS Plymouth and Torbay Care Trust) have worked with community partners Routeways and Young Devon, speaking to children, young people and their families to develop key messages and themes for the charter.
Helen McLindon, who led the project on behalf of NHS Devon, NHS Plymouth and Torbay Care Trust, said: “Children and young people have told us that they want respect and understanding from their carers, involvement in their own care, better communication and a commitment from the NHS and its partners to improve services.
“This charter marks an important step forward in ensuring that children or young people who have a long term illness, or those who become terminally ill, feel they are listened to and are sensitively supported.
“We recognise how emotionally challenging it can be for them and their families and understand how important it is that we work with them to ensure their personal preferences are heard and recorded when planning how to provide the best support and care for them.
“Young people were clear that only they and their families actually know how they feel and that it is important to them that they are fully involved in decisions about their care and treatment, including when and where they receive it.”
Dr Susanna Hill, a GP from Braunton, welcomed the news. “Understanding what is important to children and young people with life limiting illness is so important when GPs are trying to help them and their families make decisions about their treatment and care,” she said.
“Having a written record of these issues and any special wishes they may have means that discussions can be relevant and meaningful.
“This is even more important if GPs do not know families well, as can happen if the usual family doctor is away or we are asked to see a child or young person out of hours.
“Understanding what the current problems are for a patient and the care that is being delivered by the usual ‘in hours’ healthcare team makes a huge difference when you pick up the telephone to answer a call from a family member.
“The better the communication between healthcare professionals and the more we understand, the better the care we can deliver.”
This week also saw the launch of the specific children and young people’s palliative care pages on the existing adult palliative care register. This will improve communication between healthcare and other professionals, which will make the transfer of children into adult services a more simple process.
