Seven pilot sites have been chosen to test out how children and young people with long-term conditions can play a more active role in deciding which outcomes are most important to them.
NHS England yesterday announced the sites chosen to develop patient centred outcome measures (PCOMs) for children and young people with a range of health conditions.
Children will be consulted on illnesses such as asthma, complex respiratory conditions, mental health, palliative care as well as use of wheelchair and posture services.
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. The seven successful sites are:
- Great Ormond Street Hospital for Children NHS Foundation Trust
- Evelina London Children’s Hospital, part of 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
- Shropshire CCG
Tim Kelsey, NHS England national director for patients and information, said he wanted to “pioneer new approaches” to measuring quality in healthcare, based around putting patients at the centre.
“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 said.
Alan Glasper, professor of children’s and young people’s nursing at Southampton University, said the initiative breathed “fresh life” into the idea the NHS should make “no decision about me without me”.
The Royal College of Nursing also welcomed the announcement of the new outcome measure trials.
Peter Carter, RCN chief executive and general secretary, said: “Nurses who work with children and young people will be delighted that NHS England have commissioned work into patient centred outcome measures for children and young people with a range of health conditions.
“Nurses working with children have a vital role to play not only in providing care but in supporting children and young people to live well and to access the care that provides the best outcome for them,” he said.
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.
Evelina London Children’s Hospital, part of 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:
- PCOM to evaluate the impact of respiratory problems on children with severe neurodisability, and their families (such as Rett’s syndrome and Downs syndrome);
- PCOM for children and adolescents with Primary Ciliary Dyskinesia (an inherited lung condition for which there is no cure);
- 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 (working with the Experienced Led Commissioning Support Programme and other voluntary and community sector organisations):
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.