Last updated on April 26th, 2022
The essentials for a parent who wants immediate answers: what are the main principles of the treatments covered in this book, and how long before you can expect some relief?
This is the whole of Chapter 4 of ‘Anorexia and other eating disorders – how to help your child eat well and be well’. I hope it sets you off on a productive path right away.
The road ahead
What does treatment look like?
- In a first phase, we parents take on responsibility for meals. We get skilled at supporting our child so that they manage in spite of their distress. We don’t wait for our child to be motivated to ‘beat’ the eating disorder because their brain is currently sending them highly distorted messages about what feels ‘right’. Regularity matters and daily caloric needs can be high, so the general rule is 3 meals and 3 snacks a day. This ‘refeeding’ or ‘nutritional rehabilitation’ provides a huge part of the physical and mental healing.
“I have been made team leader of food”
- Your child cannot achieve recovery while their body perceives a weight deficit, so if they lost weight or did not maintain a normal weight/growth trajectory, the focus is on rapid, full weight restoration. You may wonder how your child can gain a lot of weight when they fear it so much. Weight gain is your friend as it reduces irrationality and anxiety. Usually as weight increases, fear of weight gain eases off.
- Parents also intervene to protect their child from compulsive or excessive exercise (a gentle stroll with you might be fine), and from vomiting, laxatives, or diuretics.
- To give effective support in this first phase, most parents find they have to take a strong lead. Usually that means their child has little or no involvement in food decisions, shopping, cooking or portioning – the parents serve the required amount on the plate and support every bite. This absolves the young person of the guilt and agony around these decisions, and it’s usually the only way to drive progress. Parents can be alarmed to hear this, given that their young person is invariably bright and independent-minded. Meal support and supervision gets in the way of both your life and your child’s (you can’t assume they will manage meals by themselves in school, for instance). Yet for almost all families, advances only begin when parents take responsibility for all the work related to health. I help you with all this in Chapter 6, where I also discuss the more unusual cases where youngsters are not so caught up in the eating disorder and can indeed collaborate successfully.
- So far your priorities have been regular meals, weight gain and stopping any purging or inappropriate exercise. At first this may have increased your child’s distress, but with nutrition you see improvements in their wellbeing. Gradually your child becomes less bound to eating disorder rules, and you may feel ready to expand their range of foods: chapter 9 guides you with exposure to fear foods. You use the same principles to bring back ‘normal’ behaviours. Whenever possible you make their life as rich and happy as possible, while also making sure that food and weight stay on track.
- All along you will be looking for what your child is able to do for themselves. Can they manage school, with or without meal supervision? Can they return to moderate physical activity? Can they choose between two snacks? Can they serve themselves a suitable portion of peas? Of lasagne? The ultimate aim is for you to safely step back, with your child managing age-appropriate autonomy and taking pride in their progress. Although this is described as the next phase of treatment, it’s done gradually because your child might need coaching and supervision. If it turns out that a challenge was too much, too soon, you will treat that as a useful experiment, provide more coaching in easier steps, or go back to the last thing that worked. This is the topic of chapter 10 and is often called ‘Phase 2’.
- And then our youngsters get discharged from treatment, after some discussions on relapse prevention. They may still have some eating disorder thoughts, and they may still not love their body, but none of this is too intrusive and they can get on with normal living. Parents also start enjoying themselves, while exerting some light vigilance because blips are to be expected.
- And then one day, youngsters and parents realise that time, repetition and the pull of life have done the rest of the healing,[i] because the eating disorder thoughts and compulsions have gone, and a beautiful young soul has recovered.
I haven’t mentioned hospitals. If your child is medically at risk then a short stay in a paediatric ward can help reset things so that you can resume treatment at home. With some youngsters the illness is just too powerful, or the parents are not getting sufficient support, so a longer spell in an eating disorder treatment centre is needed. This does not provide a complete cure, but good units make parents part of the team and skill them up to take over as soon as possible.
Food for weight restoration and stability
By now you’ll have got the message about the importance of food and weight. Food is an essential medicine in the first stage of treatment. The brain is particularly calorie-hungry. People who binge or purge need regular meals in order to gain stability and escape a vicious cycle of obsessive restriction, terrible hunger, eating with guilt or bingeing, followed by another attempt at restriction. Children and teens need to grow and it is never OK for them to lose weight (contrary to ‘anti-obesity’ propaganda). Losing weight is especially dangerous for individuals who are vulnerable to an eating disorder because it triggers distorted thoughts and behaviours. Another big trigger is dipping below a certain weight: for those with a vulnerability it’s crucial to be within a weight range that meets their individual, genetically programmed needs.
As a medicine for an eating disorder, food really sucks. It’s the one thing sufferers fear the most in the world, and they need to swallow the pill not once, but five or six times a day, day after day. Sadly, medical science hasn’t yet come up with anything that is easier for patients or their families.
If you’re wondering how anyone can possibly get a child with anorexia to eat, read on. In Chapter 7 I list general principles and offer some dos and don’ts, then in Chapter 8 you can be a fly on the wall and witness an entire mealtime session. And in Chapters 13 to 15 I give you emotional tools to help you support your child meal after meal.
Train the brain: practice ‘normal’
Food is fuel, but there is an additional reason why it is medicine: it seems the brain needs to relearn what is ‘normal’. For instance, when we repeatedly serve a fear food it starts to feel ordinary and safe again. Our children often lose the sense of what a normal portion is, what their body is supposed to look like, what it feels like when they have a sufficient level of body fat. Sometimes our children need to remember what it’s like to be happy and carefree. The way they shed eating-disordered habits is by engaging in new behaviours. Their brains need nutrition, exposure, and time, in order to heal and form new, healthy pathways.[ii] Our youngsters need help with this, and that’s why weight-restoration should never signal the end of treatment.
Every step of this treatment call upon the ability of parents to give unconditional love and support. This is not empty sentimentality; the evidence is that criticism and hostility from parents impedes progress.[iii] We parents hold essential keys to the treatment, because families are all about love.
Your love helps your child to trust you so that together, you can tackle seemingly impossible challenges. Suffering is a lot more bearable when we are feeling loved and understood. And for those of you who worry that your child isn’t yet getting psychotherapy, note that your compassion provides emotional healing, and it models emotional skills that they will need later for resilience, relapse prevention and a wonderful life. If you yourself are presently suffering, you may already have felt how healing and empowering it is when someone hears you, understands you, accepts you.
Love is hard to put into practice in the middle of our daily storms. This is why this book offers emotional tools as well as practical ones. Jump to Chapter 13 if you feel this is what you need the most right now.
When does psychotherapy have a role?
You may have noticed that psychotherapy does not feature at the start of the road map. That may seem strange, because an eating disorder looks like a psychological problem. We want to talk some logic into our child. Motivate them. Find out what upset caused the eating disorder and fix it. We are convinced that the right conversations will make our children want to eat. Indeed the illness used to be treated this way but the results were poor. It is a blessing that nowadays parents can learn to support good nutrition, as this is the first step to healing the mind.
Psychotherapy does have a role (see Chapter 12), but usually only towards the middle or end of treatment. It’s rare that someone with a starving brain can usefully engage with talk. Occasionally I hear of a child who benefited early on from therapy around anxiety or a specific trauma, but the feeding work had to go on just the same.
If your child did not have any psychological issues before the eating disorder, it’s quite possible they will not need any psychotherapy. The most common psychological issues that currently make your youngster so unhappy – depression, anxiety, rigidity, delusional and obsessive thinking, compulsions – recede with nourishment and with the behavioural work to make ‘normal’ feel normal again. When a health service won’t yet provide psychotherapy, it’s not to save money, it’s good scientific practice.
There are no drugs to cure eating disorders. But some youngsters greatly benefit from medication to assist with anxiety, depression, delusional thoughts, or self-harm – especially at the beginning of treatment, when eating causes such high levels of distress.[iv] It’s the role of psychiatrists to assess and keep reviewing.
What is this method called?
My aim in this book is to help you apply the big principles I described in the road ahead. I’ve chosen to refer to these as ‘family therapy’ or using an umbrella term: ‘family-based approach’.
Occasionally I use names referring to specific manuals[v] or publications, such as ‘family-based treatment’ (FBT) or ‘family therapy for eating disorders’ or ‘anorexia/bulimia-focused family therapy (FT-AN or FT-BN)’. I’ll clarify right away that any reference to ‘family therapy’ is not about ‘fixing’ the family – quite the opposite, it’s to make good use of wonderful parents.
“Treatment with the family as opposed to treatment of the family”[vi]
In case you’ve heard of the ‘Maudsley approach’, that’s what people used to call FBT (don’t confuse it with the ‘New Maudsley Method’, which is significantly different). Most of the time you and I don’t need to get caught up in the details that differentiate one method from another (I say more in Chapter 12). Indeed it may reassure you that the experts behind these methods praise and recommend my resources.
Choose a family-based approach first
If your child or adolescent has anorexia or bulimia (or an atypical version of those), your therapist should be offering one of the above before considering any other method. That’s because research indicates it is the most effective for the most teens. Professional psychiatric organisations or national health bodies that collate research worldwide come to the same conclusion.[vii]
“The evidence to date indicates that Family-Based Treatment (FBT) is the most effective treatment for children and teenagers with anorexia. A key component of the FBT model is that the parents are given the responsibility to return their child to physical health and ensure full weight restoration.”[viii]Canadian Paediatric Society
From the many parents I talk with, I see the most rapid progress when a family-based approach is applied competently. Further down the line, other methods can be useful as adjuncts.
Because there’s confusion even among the professionals on what to call any particular method, I recommend you check that what’s offered follows the big principles I’ve described. Indicators that the approach is fundamentally different are:
There are valid, evidence-based individual treatments (sessions are mostly between your child and the clinician) with parents playing at best a supporting role from the sidelines. Statistically, they are less likely to work, or they’re slower. I discuss treatments in Chapter 12. For now the message is simple: a family-based approach is the first one to go for (with or without a spell as inpatient if necessary).
Or to put it simply, your child needs your help.
One size fits all?
Our confidence in a family-based approach rests on published studies based on the manual or teachings of one particular team. Should we follow an approach to the letter? And which one? The FBT manual, or the ever-evolving approach from the Maudsley team? Both fail a number of patients, and we don’t know why. Research has highlighted some essential ingredients[ix] but we are left guessing which elements might be optional or even detrimental.
If you find some aspect of treatment unhelpful, or if you read contradictory messages here or on parent forums, discuss pros and cons with your team. If you’re still a novice, beware of putting all your trust into what another parent says worked for their child – there’s a reason why scientists use big populations and statistics, and although your child is an individual, an eating disorder brings on surprising similarities.
Consider your clinicians’ level of expertise. Are they well trained in the method? Do they have experience from a wide variety of previous patients, including those with co-occurring disorders or autism? Are they aware that what you’re asking for is normal in the next town? For example with FBT you’re unlikely to be given a meal plan, whereas with the Maudsley team that is normal practice. Another example: one therapist may consider open weighing essential while another therapist is happy to weigh blind for a while.
A rule of thumb is that the less experience someone has, the more they should stick to manuals (likewise, as I rarely bake cakes, it’s risky to go ahead without a recipe). We all have to be aware that we ‘don’t know what we don’t know’ especially when we don’t keep abreast of the field. Some of the truths that we are so dogmatic about today will tomorrow be overturned by a piece of research.
From the authors of the Maudsley service manual:
“The differences between the manuals […] act as a further reminder, that our knowledge of how treatments work is still very limited and that in applying manuals to practice, therapists need to understand the concepts that underpin the interventions. They also highlight, that families vary and that what may suit one family well may be a poorer fit for another family and that clinical flexibility and respect for the families’ own view must not be lost when treatment is informed by a therapy manual.”[x]
And from Daniel Le Grange, co-author of the FBT manual:
“I believe rules are made so that you know when to set them aside […] We should never be rigid, it should never be. ‘Oh everyone has to go this way. Probably most people will go this way […] but there are always exceptions”[xi]
In this book, I aim to highlight what usually works best as well as variations that might be great for some – and terrible for others. I find the adaptations made by parents of autistic youngsters particularly instructive[xii] – if only because they highlight how one person’s solution is someone else’s flop.
There are many everyday questions we confront for which there are no scientific and absolute answers. How long to persist with this difficult meal? How much rudeness to tolerate? Using carrot or stick? To cope with uncertainty, see your decisions as experiments that will inform your next steps.
When to treat co-occuring disorders
It’s common for eating disorders to be accompanied by conditions (called ‘comorbid’ or ‘co-occurring’ conditions) that your child didn’t suffer from before, such as OCD, anxiety or depression. There are also children who developed an eating disorder after they’d been suffering from other disorders, like anxiety disorders (including OCD), autistic spectrum disorder (ASD) or attention deficit hyperactivity disorder (ADHD).[xiii] And indeed research is indicating that these conditions share a number of genes. Unless there is a risk of suicide or serious self-harm, the general rule is to treat the eating disorder as a priority because:
If a clinician suspects that your child has clinical depression, borderline personality disorder (BPD), bipolar disorder (manic depression), OCD or autism, hold the possibility lightly. I know of cases where a clinician lacked the experience to appreciate the degree to which an eating disorder can create aggression, volatility, depression, suicidality, anxiety or rigidity. Often, once the child’s eating disorder is successfully treated, the other diagnostic labels are dropped.[xiv]
Adapting for autism spectrum disorder (ASD)
Many youngsters with an eating disorder also have autism spectrum disorder (which now includes the old diagnosis of Asperger’s). Some parents wish that ASD had been diagnosed early as it would have given them the confidence to adapt the treatment. Autism diagnosis can be tricky because malnutrition temporarily brings out anxiety, rigidity, and rituals. Conversely, ASD is sometimes revealed precisely because malnutrition tends to intensify autistic characteristics.
Autism presents in such varied forms, there is no single way of modifying the eating disorder treatment. You and your clinical team will need to assess, experiment and adapt. You are not alone though: others have been contributing their know-how. Use the search box in my website for ‘autism’ and you should find a useful compilation from parents and professionals.
Some parents report that their child’s love of rules makes refeeding easier. Others, who may have started with a degree of confrontation, have found that their child will only progress when they sense they are making the decisions. This only works when parents are able to steer these decisions, and the journey may go slower but the end result is still a young person who is free of an eating disorder. Indeed, whereas ASD is part of your child’s makeup, the eating disorder can be treated.
- On my website: Eating disorder treatment for your autistic child or teen[xv]
Expect full recovery
Our family therapist said she expected nothing less than full recovery. You need to know that this illness is treatable so that you can hold the candle of hope up for your child, who currently only sees a dark tunnel. My daughter only gave me one piece of advice as I wrote this book was, ‘Make sure they know they will recover.’
You may have found depressing statistics on recovery: they will reflect old treatments and will not apply to you. A family-based approach is so very different and more effective. In chapter 12 I explain the recovery statistics relating to this approach and how they relate to the particular criteria of the studies.
People recover at any age, even after decades of sub-standard treatment. Don’t allow anyone to tell your child they will have to forever live with their eating disorder. I have followed families where the illness is very severe and complicated, with several years of tube feeding in eating disorder units, and the young person is now recovered and thriving.
Your child is not a statistic and you will use all the tools at your disposal, and take the time it takes, to accompany them all the way to complete freedom from any eating disorder. In the process, you will all grow closer, stronger and wiser. Sure, some things are not in our control. So we focus on the things we have the power to do. We cannot control how many apples a tree will produce, but we can provide all the conditions for it to flourish.
How long before my child is well again?
The illness hits our children in different ways, so some recovery journeys are relatively straightforward, while for others it takes time. As they look back, most parents say treatment took longer than they’d thought at first, and that it’s useful to know this is ‘a marathon, not a sprint’. I’d like you to appreciate that this marathon will not be as tough, as time goes on, as it is at the beginning. If you’ve recently started tackling the eating disorder, you might be going through the worst of it right now. As time goes on you will probably find things get a lot easier, almost routine. And you will have some joys:
“Last night, when I picked up my girl, I had forgotten to bring the snack for the ride home. She said, ‘But Dad, I'm hungry.’ Just matter-of-fact. So matter-of-fact that I didn't realize she had said them until a few minutes ago, nearly 12 hours later.
I have waited for those two words, ‘I'm hungry.’ I have not heard them since I don't know when.
ED took another hit last night. And my girl took another step. I am joyful.”
Let me try and give you some indicators so you can form realistic expectations if your child is suffering from anorexia. Children who are underweight need your intense support for at least as long as it takes to get them weight-restored. You can estimate how long that will be if you plan on 0.5 to 1 kg per week of weight gain (this is the expected norm at home, and a hospital should go faster). With every meal eaten, every kilo gained, our children tend to get better physically and mentally. They manage to eat without too much cajoling… and you too gain confidence. The crisis is over. You may have more and more delightful moments when you feel that your kid is back. There can be day-to-day or week-to-week fluctuations, so if you have bad times, step back and see where you are in the overall picture.
Eventually your child will reach a weight that seems to suit them (usually several kilos higher than their pre-anorexia weight), and many (but not all) of us see a big improvement in our child’s mood and thinking.
The next focus of treatment is to guide your child to practice normal behaviours (through repeated coaching and ‘exposure’) and to experiment with small freedoms. You could count 6 months of being quite hands-on during this phase, though this is highly variable. The brain and body need time to heal before a person’s recovery is secure. For instance it can take over a year for normal hunger cues to return.
There will be some situations, some meals, where your son or daughter continues to need support or supervision for several months after weight-restoration. For the areas your child can safely manage, you will gladly let them resume age-appropriate independence. While your child eases into normal life, you may enjoy greater freedom yourself.
Another way of looking at the timescale of the illness is that life will seem more normal when visits to therapists end. This typically happens 6 to 12 months after the start of family therapy, the recommended treatment for adolescents. Studies indicate that fewer than half of patients have fully recovered by then, so expect your role to continue quite a bit longer. Therapist Sarah Ravin reports that of the anorexia patients who completed treatment with her, it took between 2 and 48 months for them to achieve full recovery.[xvi]
A year or two after treatment started, for most of us life feels increasingly normal, though I consider it wise to maintain some level of vigilance until our children are in their mid-twenties and their brains have fully matured.
Here are factors that usually support faster improvement and better outcomes in the case of anorexia:[xvii]
- Treatment follows a family-based approach (nutrition, no purging, compassionate family support, consolidating normal behaviours).
- Treatment starts as early as possible. Right away, your child gains weight at a fast rate.
- Recovery may proceed quicker if your child didn’t have other mental health disorders prior to the onset of the eating disorder.
- It may seem particularly tragic when the illness hits a very young child, but this makes treatment easier and increases the chances of a swift recovery.[xviii]
- If time is on your side (i.e. if there’s no pressure for your child to leave home), you have a better chance of future-proofing your child against relapses.
[ii] For instance, Hildebrandt, T., Bacow, T., Markella, M. and Loeb, K.L., ‘Anxiety in anorexia nervosa and its management using family-based treatment’, Eur Eat Disord Rev. (January 2012) vol. 20, no. 1, pp. 1–16, http://www.ncbi.nlm.nih.gov/pubmed/22223393
For these concepts put in practice for adults, see Tabitha Farrar’s book ‘Rehabilitate, rewire, recover!’ https://amzn.to/2Gpxnrk
[iii] There’s a focus in the manuals on parents being supportive, not critical. One study indicates that the higher the ‘expressed emotion’ (hostility, criticisms) from fathers, the lower the chances of recovery: Daniel Le Grange, Elizabeth K. Hughes, Andrew Court, Michele Yeo, Ross D. Crosby, Susan M. Sawyer, ‘Randomized Clinical Trial of Parent-Focused Treatment and Family-Based Treatment for Adolescent Anorexia Nervosa’ in J Am Academy Child & Ado Psych (2016), vol. 55, no. 8, pp. 683–692, http://tinyurl.com/z7rwsgr
[iv] The AED Guidebook for Nutrition Treatment of eating disorders (2020) reviews medication www.aedweb.org Dr Julie O’Toole provides a good introduction to the role of medicines like Olanzapine, Prozac or Zoloft. ‘Directly observed therapy, baby bird style, swish and swallow twice’ (13 May 2011) on https://www.kartiniclinic.com/blog/post/directly-observed-therapy-baby-bird-style-swish-and-swallow-twice/ and on Let’s Feast Blog (23 May 2014): ‘Medication’ letsfeast.feast-ed.org/2014/05/guest-post-by-dr-julie-otoole.html and an entire chapter in Dr Julie O’Toole’s Give Food a Chance (https://amzn.to/2CivYS6).
[v] The FBT manual is by Lock and Le Grange in the US: amzn.to/3jZKpPW The Maudsley Service manual outlines treatment at the South London and Maudsley’s child and adolescent service, with Ivan Eisler, Mima Simic, Esther Blessit, Liz Dodge and team, who train many of the UK clinicians: mccaed.slam.nhs.uk/wp-content/uploads/2019/11/Maudsley-Service-Manual-for-Child-and-Adolescent-Eating-Disorders-July-2016.pdf
[vi] Maudsley Service manual: mccaed.slam.nhs.uk/wp-content/uploads/2019/11/Maudsley-Service-Manual-for-Child-and-Adolescent-Eating-Disorders-July-2016.pdf where you’ll find a nuanced discussion on externalising
Nice guidelines (May 2017): nice.org.uk/guidance/ng69 I explain them on anorexiafamily.com/nice-guidelines-adolescent-eating-disorder-ng69
Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of eating disorders. https://www.ranzcp.org/Files/Resources/Publications/CPG/Clinician/Eating-Disorders-CPG.aspx
The National Institute of Mental Health in nimh.nih.gov/health/topics/eating-disorders: ‘Family-based therapy, a type of psychotherapy where parents of adolescents with anorexia nervosa assume responsibility for feeding their child, appears to be very effective in helping people gain weight and improve eating habits and moods.’
From the American Academy of Pediatrics:
Rosen, D. S. and the Committee on Adolescence, ‘Identification and Management of Eating Disorders in Children and Adolescents’, Pediatrics, Official Journal of the American Academy of Pediatrics (2010) vol. 126, p. 1240, http://pediatrics.aappublications.org/content/126/6/1240.full.pdf . They write: ‘Family-based interventions, nevertheless, remain an effective and evidence-based treatment strategy for adolescent AN in both open trials and randomized controlled studies … Unfortunately, family-based treatment by experienced providers is not available in all communities. Nevertheless, the essential principles of family-based treatment can still be encouraged by community providers in their work with patients and families.’
[viii] Canadian Paediatric Society. Position Statement. ‘Family-based treatment of children and adolescents with anorexia nervosa: Guidelines for the community physician’ (Posted 1 January 2010, reaffirmed 30 January 2013). Findlay, S., Pinzon, J., Taddeo, D., and Katzman, D. K. (Canadian Paediatric Society, Adolescent Health Committee), Paediatric Child Health (2010) vol. 15, no. 1, pp. 31–5, http://www.cps.ca/documents/position/anorexia-nervosa-family-based-treatment
[ix] For instance, Ellison, R., Rhodes, P., Madden, S., Miskovic, J., Wallis, A., Baillie, A., Kohn, M. and Touyz, S., ‘Do the components of manualized family-based treatment for anorexia nervosa predict weight gain?’ in Int. J. Eat. Disord. (May 2012), vol. 45, no. 4, pp. 609–14, http://www.ncbi.nlm.nih.gov/pubmed/22270977. This showed that parents taking responsibility, being united, not criticizing the patient and externalizing the illness predicted greater weight gain. Sibling support did not predict weight gain.
[xvi] Dr Sarah Ravin reports on end of treatment outcomes with her own eating-disorder patients: http://www.blog.drsarahravin.com/eating-disorders/end-of-treatment-outcomes-for-patients-with-anorexia-nervosa/
[xvii] For more on this, see Lock, J., ‘Evaluation of family treatment models for eating disorders’, Curr Opin Psychiatry (2011), vol. 24, no. 4, pp. 274–279. http://www.medscape.com/viewarticle/744675
[xviii] Ravin, S., ‘Defeating the Monster: Helping Little Girls Overcome Anorexia Nervosa’. http://www.blog.drsarahravin.com/eating-disorders/defeating-the-monster-helping-little-girls-overcome-anorexia-nervosa/
Evidence that being at the younger end of the 12 to 18 range is a predictor of successful weight gain: Agras, S. W., Lock, J., Brandt, H., Bryson, S. W., Dodge, E., Halmi, K.A., Jo, B., Johnson, C., Kaye, W., Wilfley, D., Woodside, B., ‘Comparison of 2 Family Therapies for Adolescent Anorexia Nervosa. A Randomized Parallel Trial.’ In JAMA Psychiatry (September 24, 2014) http://archpsyc.jamanetwork.com/article.aspx?articleID=1910336
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