Eating Disorder Awareness Week a chance to “focus on change”

There can be fewer situations more distressing or disruptive to a family than having a child or young person affected by an eating disorder.

The effects of anorexia or bulimia can be just so devastating and it is vital that when patients turn to us for help they receive support as soon as possible.

Quite shockingly, Anorexia Nervosa has the highest mortality among psychiatric disorders.

Children and young people suffering from an eating disorder can in some cases cause significant physical consequences to their bodies of severe malnutrition, or equally tragically from suicide.

In the last seven days alone there have been numerous stories in the media about the ability of children, young people or their families to access care, the frustration when they cannot do so in a timely fashion or have to travel very long distances.

Today, at the start of National Eating Disorder Awareness Week, is a chance for us to focus on not only what is really important when caring for a someone with an eating disorder, but also the changes we know we need to make to improve their health outcomes by improving access to evidence based care packages.

Children, young people and families’ experience and overall safety is critically important to us so we intend to make improvements initially by looking at the way we commission services and, crucially, taking advice from a wide range of specialist and multi-professional sources to help us to deliver the best possible models of care.

Importantly, the Government has already committed £150m – £30m per year for the next five years – to improve eating disorder services for children, young people and their families, particularly looking towards the development of more community-based ED services.

There is much evidence to show that community specialist eating disorder services are associated with the best outcomes with fewer relapses, and importantly keeps the child, young person and their families closer to their homes. Early diagnosis and treatment is vital because by helping these children or young people when the problem first arises we can aim to vastly reduce problems becoming more challenging or remaining with them into adulthood.

This additional funding commitment could not have come at a better time. The BEAT study published over the weekend shows that it estimates the total financial and economic cost to the UK of ED is around £15bn per year. So not only are these conditions devastating for the young people and families who suffer but they also cause huge financial strain to the NHS and further afield.

There will be a process for Commissioners to apply for this funding, but as well as this we, in NHS England, have a series of goals to improve care for children and young people with an Eating Disorder which we will be implementing in the coming year.

Firstly, as we build capacity, we will introduce new waiting and access times and standards to ensure we do not see patients waiting two years for treatment, as recently highlighted in the Press. We are developing these now for patients and envisage it will demonstrate a strong commitment for change.

Secondly, as I said before, we will actively promote accessing treatment in the community for children, young people and their families as much and as safely as possible. It may of course still be appropriate to have hopefully brief in-patient spells for assessment, but the majority will thrive just as well accessing treatment while living at home. We want, therefore, to ensure children, young people and families access specialist eating disorder treatment as outpatients wherever possible.

Thirdly, we want children, young people and their families to understand how to ask for help in their local areas and we want all those working with children and young people with mental health problems, be this in health, education, social care or wherever, to know how to recognise eating disorders and how to access appropriate care.

Every child or young person with an eating disorder deserves to have appropriate evidence based specialist treatment, based on their needs. It is our fervent wish that we achieve the best outcomes for them.

For so long, mental health has been a Cinderella service compared with physical health, but now, with the introduction of the first access and waiting time standards we will see a step change. Hopefully we can roll that out for eating disorder services with this new investment and change life for the better to help our children, young people and their families.

I have been in post as National Clinical Director for Children and Young People for almost two years now, and I have a real sense of excitement that we are on the brink of something really good – true Parity for Children and Young People versus Adults in Mental and Physical Health, removal of associated stigma, improved access with more robust clinical pathways, and safe Transition to Adulthood, working with our system partners in an all-enveloping cloak of care.

In the midst of all of this, in control, defining need, speaking and being listened to, are the children, young people and their families we are here and pledged to do our very best for, as we remember that the NHS belongs to them!

Dr Jacqueline Cornish is NHS England’s National Clinical Director for Children, Young People and Transition to Adulthood.

Jacqueline Cornish

Dr Jacqueline Cornish was the National Clinical Director for Children, Young People and Transition to Adulthood in NHS England from 2013 to 2019.

As a clinician she specialised in pioneering treatments for childhood cancer and leukaemia, and brought to NHS England 20 years’ leadership experience in the NHS, having been Head of Division of Women’s and Children’s Services at University Hospitals Bristol NHS Foundation Trust, and a former Director of Paediatric Stem Cell Transplant (SCT) at the Bristol Royal Hospital for Children.

The post of National Clinical Director for Children and Young People is now held by Professor Simon Kenny, Consultant Paediatric Surgeon at Alder Hey Children’s NHS Foundation Trust in Liverpool and National Clinical Lead for Paediatric Surgery for the Getting It Right First Time programme.