12 February 2015
Children and young people to get more say in their health care
Children and young people are set to play a more active role in
deciding which mental health outcomes are most important to
them.
The move comes as NHS England announced Bristol as one of seven
locations across the country chosen to develop Patient Centred
Outcome Measures (PCOMs) for children and young people with a range
of health conditions.
It involves putting patients, and their families and carers, at
the heart of deciding which goals are most valuable for
them.
As well as psychological interventions as part of medical
treatment, and mental health conditions such as self-harming and
eating disorders, children will be consulted on illnesses such as
asthma, complex respiratory conditions, palliative care and on use
of wheelchair and posture services.
The University of the West of England, Bristol, working with
University Hospitals Bristol NHS Foundation Trust; Children's
Hospice South West and Palliative Care Working Group; will
undertake a project to provide robust and meaningful patient
centred outcome measures for children and young people receiving
palliative care services.
Tim Kelsey, National Director for Patients and Information at
NHS England, explained: "This is all about asking young patients
what is most important to them. The NHS wants to pioneer new
approaches to measuring quality in health care, and putting patient
and carer voice at the centre of this is key.
"The NHS works best when it listens hardest to what is important
to patients. I am delighted we are able to support seven
organisations across England to work with patients to understand
the most important outcomes for children and young people living
with such a wide range of conditions and symptoms."
He explained that as childhood and adolescence is a formative
period in any person's life, it is important to have outcomes
centred on their needs so as to maximise their health and support
their developing mind and body.
The work of the Children and Young People Health Outcomes Forum
https://www.gov.uk/government/groups/children-and-young-peoples-health-outcomes-forum
has championed the need to focus on children and young people's
outcomes.
"Getting this right for the youngest members of the population
means we build a firm foundation for a healthier adulthood," added
Mr Kelsey.
NHS England launched a bidding process in December to access
funding for the development of new outcome measures which are based
on the views of patients.
A total of 48 bids were received which were reviewed by a panel
consisting of NHS staff and external representatives from the
National Parent Carer Forum and the Council for Disabled
Children.
Panel member Alan Glasper, Professor of Children's and Young
People's Nursing at Southampton University, said: "This initiative
breathes fresh life into the mantra of the NHS which is predicated
on 'no decision about me without me'."
The seven successful sites are Great Ormond Street Hospital for
Children NHS Foundation Trust; Guy's and St Thomas' NHS Foundation
Trust; Alder Hey Children's NHS Foundation Trust; University of the
West of England (Bristol); Nottingham University Hospitals NHS
Trust; North of England Commissioning Support and Shropshire
CCG.
Professor Martin Elliott, Co-Medical Director of Great Ormond
Street Hospital for Children NHS Foundation Trust, said: "Here at
Great Ormond Street we are committed to finding the best way to
both measure and publicise the outcomes of our care. The outcomes
that matter most are those which are important to our patients and
their families.
"Winning this bid means we can work with our patients to give
them the information they want in ways that are useful to them, and
helps us get better in all we do."
Dr Ian Sinha, Respiratory Paediatrician at Alder Hey Children's
NHS Foundation Trust, said: "This is a great opportunity to develop
a way of finding out what is important to children with complex
breathing disorders - and the exciting part is allowing the parents
and children to take centre stage and for us as clinicians to
listen to them."
Further details of the seven successful
bids:
Great Ormond Street Hospital for Children NHS Foundation
Trust
To develop Goal Based Outcomes for psychological interventions
as part of a child's medical treatment, across a wide range of ages
and medical conditions. The medical conditions will include all
those within the specialties of General Surgery, Craniofacial
anomalies, Cleft Lip and Palate, Plastic Surgery (hand, ear
anomalies, birthmarks, vascular malformations), Urology, Cochlear
Implant, Spinal Surgery, Orthopaedics.
Guy's and St Thomas' NHS Foundation Trust
This bid builds on ground breaking work already undertaken to
develop online mechanisms to engage with children. This project
will involve the development of an online animated PCOM which will
allow children aged 5-10 with chronic conditions who require
admission to hospital to: a) identify the most important outcomes
for them, and b) record how effective their treatment is in
delivering these outcomes.
Alder Hey Children's NHS Foundation Trust (linking to
other hospitals across England)
Three strands of work are included in this bid:
i. PCOM to evaluate the impact
of respiratory problems on children with severe neurodisability,
and their families (such as Rett's syndrome and Downs
syndrome);
ii. PCOM for children and
adolescents with Primary Ciliary Dyskinesia (an inherited lung
condition for which there is no cure);
iii. Development of the
"The Adolescent Driven Outcome Measure (ADOM)". To
be designed by individual adolescents with chronic conditions,
who populate it
with the items that are specifically important to them, and who
themselves determine how improvements (or detriments) are
scored.
University of the West of England, Bristol (working with
University Hospitals Bristol NHS Foundation Trust, Children's
Hospice South West and Palliative Care Working Group)
This project will provide robust and meaningful patient centred
outcome measures for
children and young people receiving palliative care services by
collating interactive electronic communications between patient,
family and professionals via a new and innovative tool that has
already been developed.
Nottingham University Hospitals NHS Trust
This bid is focussed working with children and young people to
define the domains for a Patient Centred Outcome Measure (PCOM) in
children and young people admitted for self-harm injuries or eating
disorders.
North of England Commissioning Support (in collaboration
with Asthma UK and the British Lung Foundation)
This project will focus on developing a PCOM for children living
with asthma. This PCOM will help commissioners understand how
people feel about treatment, what outcomes matter to them most and
how outcomes change over time. It will support the development of
outcomes based commissioning and contracting for asthma care in
children.
Shropshire CCG (working in collaboration with a range of
voluntary sector organisations)
The aim of the project will be to improve outcomes for young
wheelchair users through devising and implementing a PCOM for
wheelchair and posture services in Shropshire. This includes
children and young people with long term disabilities, neurological
conditions, congenital conditions or those who have an
injury/disability
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