Sunday 9 November 2014, 18:29 | By

In the news November 2014 – Young adults’ palliative care needs are not being met

CSL In The News

We share news items that relate to creative arts therapies, palliative care and mHealth every day on Twitter. Here’s a round-up of some of these articles that we hope help to reinforce some of our core values.

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YOUNG ADULTS’ PALLIATIVE CARE NEEDS ARE NOT BEING MET

There are significant gaps in palliative care for young people living with life-limiting conditions, as they transition from children’s to adult services, according to new research. The Bridging the Gap study, conducted by Bangor University and funded by Together for Short Lives, highlights four key differences between adult and children’s services, which affect the care young people receive: how adult services don’t provide holistic support from diagnosis; that the families of those young people don’t benefit from adult palliative care services whereas they receive great holistic support from children’s services; the adult palliative care services are more geared to the needs of much older people towards the end of their lives; and how adult services are less familiar with managing rare conditions that originate in childhood.

Professor Jane Noyes from Bangor University’s School of Healthcare Sciences says: “Young people with life-limiting conditions and palliative care needs simply fall through the gaps during transition from children’s to adult palliative care services. Adult palliative care services need to extend their scope to better meet the needs of young people with life-limiting conditions and their families.”

If you would like to learn more about these challenges – which are very close to our hearts at CSL – this report on eHopsice.com also points to a short film, guide and toolkit which are extremely useful when considering the palliative care needs of young people.

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CREATIVE THERAPIES ARTWORKS SELL FOR A SMALL FORTUNE AND THE ARTIST IS ONLY FIVE 

Five-year-old Iris Halmshaw recently hit the headlines around the world due to her incredible artworks which are selling for thousands of pounds. Likened to Monet and other infamous impressionist artists, Iris from Leicestershire has been creating art since she was three-years-old, a year after she was diagnosed with autism, and has been enjoying the medium as her own special way of communicating, as reported by CNN.

You can see some of Iris’s extraordinary art here. But what is disappointing is the advice (or lack of) that Iris’ mum Arabella Carter-Johnson received when she was originally diagnosed. According to Arabella, the doctor said there were few therapies that worked for children with autism, which she found ‘depressing’. Thankfully, Arabella and her husband Peter-Jon Halmshaw were not deterred and following research were able to introduce Iris to art therapy – a decision that is reaping many benefits as the money raised from selling Iris’s creations is now funding other therapies that are improving her daily life.

Similarly, we pointed out a report on Long Beach Press Telegram which describes how adults with autism, cerebral palsy and Down’s syndrome are benefiting from art therapy in California, US. The arts involved include music, painting, poetry, dance, literature all aimed at enabling self-expression and building mental and motor skills, decision making abilities and social interaction.

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NEW MHEALTH OFFERING PROVIDES PRIVATE SOCIAL NETWORK FOR PEOPLE LIVING WITH COMPLEX CONDITIONS

While we aim to point out many new mHealth ventures, we also realise that in a growing market place, only so many of these offerings will make their mark as everyday tools to improve healthcare. There are mentorship programmes existing to identify those potentially key apps and recently, we highlighted StartUp Health’s latest class of companies (as reported on by iMedical apps), which included one proposition – Curatio – that was of particular interest. Curatio is a secure, private social network for people who are facing similar health conditions, for them to find peer support and advice as well as for family and friends to connect.

Curatio is described as “a matchmaking and engagement platform for patients. We help patients find each other, and give them private, mobile networks that deliver the connections, resources and guidance needed for successful health management.” This is an area of particular interest to CSL, so we will keep an eye on Curatio and wish them all the best with their development.

Image copyright: kmiragaya / 123RF Stock Photo