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 today announces seven sites 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.

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.

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:

  1. Great Ormond Street Hospital for Children NHS Foundation Trust
  2. Evelina London Children’s Hospital, part of Guy’s and St Thomas’ NHS Foundation Trust
  3. Alder Hey Children’s NHS Foundation Trust
  4. University of the West of England (Bristol)
  5. Nottingham University Hospitals NHS Trust
  6. North of England Commissioning Support
  7. 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.
  • 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.


  1. Nicola Wolstenholme says:

    Interested to hear about this work as it progresses. How and where will you be publicising updates on the work so I don’t miss it? Thanks.

  2. Maggie McCutcheon says:

    This sounds very exciting. Disappointed not to hear about the bidding process. One thought is the number of projects that are acute trust based and very speciliast (not that this work doesn’t need doing). The CAMHS is also rather specialist and again linked to an acute Trust. Would have been good to have generic work with CYP about CAMHS support and lack of it in their communities and I believe it is possible to develop outocme measures around that.
    Looking forward to hearing how the projectrs unfold.
    Hillingdon CCG Children’s Commissioning Lead

  3. Vicky foster says:

    What would ASD AUTISM ASPERGES SPECTRUM come under please, as I feel there is more help & support & early diagnosis needed desperately, there is a massive crisis & these kids especially Teenagers that’s parents r fighting for immediate support, as they r trying to commit suicide & self harm through lack of understanding & how to treat these kids with respect & professional help they desperately needs, the parents r crying out for help & respite, we r decent parents who work so hard to being a parents to special needs kids, we can only do our best as carers, we r not CAHMS, MENTAL HEALTH PRACTITIONERS, PHYCOLOGISTS, COUNSELLORS,NURSES,DRS etc please please help NOW