Children and young people to get more say in their health care

UWE Bristol will be working with a range of services involved in providing health care for children and young people with life-limiting conditions across the South West.  The project team will collate interactive electronic communications between patient, family and professionals via a new and innovative tool.

Dr Antonia Beringer explains, “The online tool is called My Quality and it has been devised to enable anyone to measure the things that they feel affect their quality of life. They simply log in to the website, ( which is free to use, and select the measures that they would like to record; it might be appetite or how they are feeling or some aspect which relates to their illness; really anything that is relevant to them. The key is that this is a patient centred outcome measure which means that the patient is making an assessment and measuring their own quality of life.

The tool was set up by Dr Nicky Harris, a Palliative Care Paediatrician and Visiting Fellow at UWE Bristol. Dr Harris said, “It is really encouraging to see that My Quality, which was developed in 2011, is making a difference to people’s lives. It enables professionals and families to work in collaboration, to address the issues of most importance to their child’s quality of life.  Families of children with life-limiting illnesses have remarked that they find this approach empowering in their health care journey. The next stage is for us to make an assessment of how useful My Quality might be as an outcome measure for services caring for people, so that we can use the information to improve service delivery.”

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 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. 

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.

Editor’s Notes

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 specialities 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


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.