ppi Archives - Health Innovation Network

To mark Eating Disorders Awareness Week, National Programme Manager Jill Owens reflects on the challenges of eating disorders, why it is crucial to treat them as early as possible and how early intervention services like First Episode Rapid Early Intervention for Eating Disorders (FREED) can help.

Eating disorders are on the rise, with referrals already increasing before the Covid-19 pandemic and particularly pronounced growth afterwards. Hospital admissions for eating disorders have increased by 84 per cent in the last five years, with children and young people especially affected with a rise of 90 per cent. They can affect anyone regardless of gender, ethnicity, age or body size. Tragically, eating disorders have the highest mortality of all mental health disorders.

I have personally seen how these disorders can fool people into thinking that it is a protective factor – providing either control or comfort. It can also be very secretive and isolate a person from those who want to help them. Recognising difficulties with eating and taking those first steps to find help takes courage and strength, but it is worth it because healthy eating habits help us live full and happy lives.

The phrase ‘prevention is better than cure’ - attributed to the 15th Century Dutch philosopher Erasmus - seems so logical that it’s hard to imagine a time when this sentiment wasn’t commonly used.

However, eating disorders are one group of illnesses where the causes and triggers can be so diverse that universally effective prevention is hard to find. If we can’t yet prevent people from developing eating disorders, what can we do?

We know that eating disorders cause changes in the way a person thinks and feels, which become harder to reverse over time.

Fortunately what we do have is the ability to tackle them as early as possible with the right tools, support and awareness. There is growing evidence that the earlier we act to provide help to people with eating disorders, the better their chances of recovering quickly and living their lives to their full potential.

We know that eating disorders cause changes in the way a person thinks and feels, which become harder to reverse over time. While recovery is possible and well worth aspiring to at any stage, a “golden window” for starting treatment of about three years from the onset of the disease seems to deliver the best long-term results. To get treatment as early as possible, people need to be able to spot the signs in themselves or others and know where to go for help.

At the HIN we have been proud to lead the spread and adoption programme for early intervention in eating disorders since 2020, a programme which has been coordinated by the AHSN Network. As National Programme Manager I have been thrilled to work with people who see the importance of early intervention, and to be part of a programme which has benefited so many people.

The model for the programme is First Episode Rapid Early Intervention for Eating Disorders (FREED). FREED supports early interventions for people aged 16-25, the most likely age to develop an eating disorder and a unique time of life where considerable changes take place. FREED uses innovative methods to address the challenges of emerging adulthood and the early stages of eating disorder development, reducing the duration of untreated illness.

FREED was developed by a team at South London and Maudsley NHS Foundation Trust (SLaM) and Kings College London (KCL) with support from the Health Foundation. The FREED team have been working hard to develop research and evidence to demonstrated the effectiveness of this approach, including studies that show:

32 per cent reduction in wait time from referral to assessment in FREED patients;
59 per cent of FREED patients with anorexia nervosa reached a healthy weight by 12 months, compared to 17 per cent of non-FREED patients;
duration of untreated eating disorder reduced from 19 to 13 months.

At the Health Innovation Network we are delighted that FREED services are now either active or developing across England. All 15 Academic Health Science Networks (AHSNs) have provided time and expertise to support local services in understanding the evidence behind FREED and work towards adoption. The programme is drawing to a close in March 2023, leaving a legacy of increased awareness of the benefits of early intervention, numerous resources to help eating disorder services set up early intervention services, and well over 2,000 young people having received treatment.

The work will continue to move forward with support from NHSE and leadership from the team at SLaM/KCL, as well as the many specialist FREED Champions and services throughout England.

If you are concerned about yourself or someone else, please contact your GP. You can also find more information through an eating disorders awareness and support charity, such as BEAT Eating Disorders.

Find Out More about FREED

FREED Website

Involving the public is crucial to ensuring health and care services are designed as effectively as possible. However, it can be difficult to get the language of involvement right. Alice Beaumont, in the HIN's Insights team, shares what we’ve learnt about using appropriate language around involvement and how this can help improve engagement.

As our principal tool for expression and communication, language can be a vehicle for positive change. However there is a considerable amount of pressure when it comes to choosing how best to convey meaning. This is particularly true in the context of patient and public involvement (PPI) where a range of words and phrases are used synonymously, and the terminology used is not standardised. This can be confusing and has arguably slowed the adoption of involvement in improving healthcare services. At the HIN, we are keen to use terms that people understand and prefer, and this is a challenge that we have grappled with when developing our Involvement Strategy.

Several of the terms used to define this area of work – particularly engagement, participation, and involvement – are used interchangeably, and other terms like co-production and co-design can add further complexity. In our strategy we use the word involvement as an overarching term to describe activities that actively engage people in AHSN programmes, seeking their feedback and using their insights to inform design and delivery. We see involvement as a way of working where service providers, commissioners and users work together to reach a collective outcome.

There is a considerable amount of pressure when it comes to choosing how best to convey meaning. This is particularly true in the context of patient and public involvement.

Within involvement, the idea of patient engagement features heavily. This phrase is generally used to describe the notion of producing more responsive and transparent healthcare systems. In the context of PPI however, the word engagement can be misleading. Unlike in involvement (where it is implied that inclusion is necessary), engagement can indicate that there is little to no expectation of reciprocal action from the participants within activities. The term engagement can also generate confusion between involvement and person-centred care (PCC, also known as care planning), which refers to working in partnership to focus care on the needs of individuals.

Another word that is frequently used in the context of PPI is participation, which is usually applied specifically to involvement within health research. Additionally, co-production and co-design refer to a PPI process which emphasises the sharing of power and responsibility. While these terms may describe distinct approaches to involvement, they all share the philosophy of valuing partnership and collaboration.

The challenges of language are not limited to defining the theory of involvement; we also need to be careful when describing the people that we involve. The terms patients and public are often used mutually with words including citizen, consumer, layperson, expert by experience or service user. Choosing between these can spark debate, for example the term consumer is often rejected as it can imply an element of choice, which does not come with an illness.

Some people we involve dislike being referred to as experts by experience, as they may not see themselves as experts and feel pressured by this description. Similarly, patient is generally accepted in certain contexts, such as when discussing physical conditions. However within the sectors of mental health and intellectual disability, the term service users is more often used, and, where meaning will not be lost, we should simply say people.

Within the HIN’s Involvement Strategy, we want to involve people with lived experience, which is a widely accepted and inclusive term. On its own, it is unclear what lived experience refers to, but within the context of healthcare, we define it as personal knowledge about healthcare systems gained directly and first-hand, rather than through representations constructed by other people.

When delving into discussions about what we should and shouldn’t say, it is easy to become confused, or even overwhelmed. It is therefore important to remember that the way we approach involvement, and how we communicate with people and communities, should be primarily judged by the outcomes we achieve, rather than the words we choose to describe it. There is not one right answer when it comes to the language of involvement; all we can do is use tact and sensitivity. If we start by asking people what language they would prefer, and adapt according to the context and individuals, then there really isn’t too much to be afraid of.

Find out More

Find out more about our involvement work in our involvement strategy.

Read the HIN Involvement Strategy

Nipping it in the bud: helping the NHS treat eating disorders as early as possible

Find Out More about FREED

The Language of Involvement

Find out More