There can be many reasons why a referral, assessment, or treatment is denied. It is rarely the intention of a clinician or the NHS to withhold care from someone who needs it.
Barriers to care can arise if a clinician does not have the full clinical information about a patient or has not received sufficient training in eating disorders. In some cases, decisions may reflect a service’s local policy or commissioning arrangements.
Clinicians should follow the clinical guidelines to ensure that you or your loved one receives eating disorder support in line with best-practice standards.
If in the process of seeking help, you or a loved one is denied treatment for or information about an eating disorder, this page is designed to help you overturn that decision.
Sometimes though, a correct decision about your treatment may feel wrong because it hasn’t been fully explained to you. In such cases, the information on these pages should be useful in helping you to ask for more details. However, it’s not designed to help you overturn clinically appropriate decisions that you disagree with. Decisions can often be challenged when they have gone against clinical guidelines which are considered best-practice.
Regardless of why treatment has been denied, many can be reversed by pointing out the error and asking for a second opinion. A second opinion is when you choose to see another doctor or clinician to ensure that the diagnosis or treatment plan you have been given is correct. NHS England encourages patients to seek second opinions if they have any doubts or concerns about their diagnosis or treatment.
In most cases, you will be better equipped to challenge decisions if you have good knowledge of the guidelines on eating disorders, but we understand trying to overturn a decision can feel overwhelming. The information on this page will help and our Helpline team are happy to guide you towards useful sections if you are not sure where to start.
The information on this page focusses on overturning decisions that have not followed clinical guidelines rather than putting in a complaint about a decision. Whilst we recognise that complaints can be necessary, our priority is to ensure that the best treatment for you or your loved one is provided as quickly as possible in line with the clinical guidelines. There is guidance below on the complaints process if you need it.
This page often refers to different clinical guidelines. Clinical guidelines refer to the recommendations that can help healthcare professionals make informed decisions about patient care. These are often based on the best available evidence which aim to improve the quality of healthcare practices. These can cover a range of physical, neurodevelopmental, and mental health conditions, including eating disorders.
In England, the NICE guidelines (National Institute for Health and Care Excellence) are used. These cover recommendations based on the current evidence for best practice in the management of people with eating disorders. To read the guidelines further, you can click head to the NICE website.
The MEED guidelines (Medical Emergencies in Eating Disorders) should also be followed across all four nations. These guidelines highlight the importance of preventing and responding appropriately to medical emergencies in eating disorders. They place strong emphasis on comprehensive medical management, which includes both physical and psychiatric care. You can read the full guidelines on the RCPSYCH website.
NHS England also has outlined guidance and expectations for eating disorder services. These cover lots of different topics, including waiting times, the importance of shared decision making and your right to choose where you get support from.
Sometimes, the process of receiving treatment is called a ‘pathway’. This can start when you first see a healthcare professional, and includes things like being referred for an assessment, and receiving treatment. You might be denied access to treatment or information at any stage of this pathway.
This page covers possible decisions across the pathway. If you, or someone you are supporting, is experiencing one, you will find the information needed here to challenge the decision or understand it better. If the decision that you’re trying to reverse or understand is not listed on this page, please tell us via our online form and we will do what we can to add useful information on this page. You can also contact our Helpline for further support and information around this.
Booking a GP appointment can feel stressful, and sometimes, because of the pressure on GP services, there may be delays. Eating disorders are a serious mental health condition, so it’s important to be seen quickly. You can ask for an urgent or emergency appointment—these are usually same-day, offered on a first-come, first-served basis, and give you the chance to see a professional straight away.
The NICE guidelines for eating disorders recognise the importance of early intervention and how current NHS systems and pathways, including long waiting lists, may make delays worse. The NICE guidelines state that clinicians should not use a single measure, such as BMI or duration of an eating disorder, to determine whether to refer you for further support. They also state that if an eating disorder is suspected after an initial assessment, you should be referred immediately to an eating disorder service for further assessment or treatment. We hope that by being referred, the support and treatment that you, or your loved one, deserves is provided.
NHS England Guidance for adults and Children & Young People further states that all community eating disorder services should be accessible to people who require care for an eating disorder, with no thresholds or barriers to receiving treatment. They also state that if someone presents to their GP with a suspected eating disorder, the GP should immediately contact the community eating disorder team and follow their recommendations.
Some GPs haven’t been trained in eating disorders, however, and therefore aren't aware of how serious they are or know that they require specialist assessment. This may lead to them not making the referral you need. Alternatively, due to service restrictions, some GPs may be unable to refer you for an assessment locally. These restrictions are most often due to commissioning and are not reflective of the help and support you need or deserve. If this is the case, talk to your GP to find out whether they can make an out-of-area referral for you. This is where you get referred to a service in another area, that may be provided by a different NHS Trust or other provider. You have a right to ask for this and further information on this is outlined on the NHS website.
Book another appointment, ideally with a different GP in the surgery. You can do this by speaking to a receptionist on the phone. You can also check if there is a GP with a specialist interest in mental health that you could make the appointment with. In many cases, doing this will be enough to get the referral you need.
Useful tips for the appointment:
Before the appointment, it could be helpful to write the doctor a letter or take along some bullet points about what you’re going through. This will help make sure you say everything you want to say. Here are some things you might want to include:
You might be able to refer yourself to your local mental health or eating disorder service without needing to go through your GP. To find this out, use our Helpfinder to find your local service and they will usually provide referral information on their website. Alternatively, you can call the service and ask whether they accept self-referrals or whether you need to speak to a GP to refer you. In some areas for children & young people, referrals can also be made via schools and colleges, amongst other routes.
If you want to complain:
You should be able to find their name on the practice website or on information boards in the surgery or just ask the receptionists and they should be able to provide you their contact details.
While the Practice Manager cannot overturn a decision, they would be the person you would have to speak to if you wanted to complain. They may be keen to help you to receive NICE recommended treatment, to make sure that a complaint isn’t necessary.
You might be denied an assessment, for example, because the service applies exclusion criteria that make it harder for you to get treatment. Being denied an assessment can be extremely disheartening and upsetting, but this does not mean you do not need or deserve the help – it is important that you continue to seek treatment.
NICE Guidance on eating disorders recognises the importance of early intervention for those with an eating disorder.
Furthermore, NHS England Guidance states that decisions, by eating disorder services, to accept referrals should never be made based solely on a person’s BMI, weight, or frequency of bingeing and purging episodes.
Moreover, NICE has listed a range of Quality Standards for eating disorders. These highlight that people with eating disorders will have higher recovery rates and a reduced risk of relapse when they receive early intervention in eating disorders.
What can you do to overturn this decision? (or understand it better)
Decisions to deny you an assessment for having another mental health or a neurodevelopmental condition or being a certain weight can go against the guidelines and therefore are not best practice. Knowing whether a decision is a bad one can be difficult but if you are unsure, do contact our Helpline for information and support.
You might be denied treatment, for example, because the service doesn’t offer the treatment you need, or because the service applies exclusion criteria that make it harder for you to get treatment. Being denied treatment can be extremely disheartening and upsetting, but this does not mean you do not need or deserve the help – it is important that you continue to seek treatment.
What you could do to overturn that decision (or understand it better):
Decisions to deny you a treatment for having another mental health condition or being a certain weight can go against the guidelines. This means that best practice, according to the NICE guidelines, is not being followed. Alternatively, NHS England Guidance states that services should not deny treatment based on BMI, weight, or frequency of bingeing and purging episodes.
Knowing whether a decision is a bad one can be difficult but if you are unsure, do contact our Helpline for information and support.
If you are living with an eating disorder, you may also be experiencing a physical health condition, another mental health condition, or a neurodevelopmental condition.
In some cases, your local eating disorder service may be able to support you with these additional needs. However, sometimes it may be more appropriate for a specialist service focused on that specific condition to provide care. If your eating disorder or mental health service says they cannot support a particular condition, and no other service is offering help either, this may be a bad decision.
You may also find yourself supported by two different services that are not working together effectively. At times, services may insist that one condition must be treated before you can access support for the other. While this can sometimes be clinically appropriate to decide this, it is not always the right decision.
The NICE guidelines state that care should be taken to ensure that services are well coordinated when more than one service is involved and that eating disorder specialists and other healthcare teams should collaborate to support the effective treatment of physical and mental health co-existing conditions.
NICE Quality Standard recommend that when people with eating disorders are being supported by more than one service, a care plan should outline how the services will work together as a lack of coordination between services can cause confusion, introduce patient-safety risks and have the potential to delay recovery.
NHS England Guidance for adults and Children & Young People states that services should offer an integrated approach, rather than a sequential approach, and that having a co-existing condition should not be always be a reason for delaying or rejecting someone for treatment.
By following the step below, you can explore whether the decisions made about your care is the most appropriate.
Most transitions between eating disorder services are patients moving from children and young people’s services to adults' services. Transitions between services can be difficult as clinicians and treatments will likely change. Nevertheless, they can be managed well if everyone communicates effectively.
The NICE guidelines states that particular care should be given surrounding transitions between young-people's services and adult services to ensure that they are well coordinated and properly managed.
The NICE Quality Standard outline how care should be taken for those moving between services and highlights that poor communication can lead to inconsistencies in messages but also management. They call for transition protocols to be followed which will ensure that treatment and support is not compromised by the transition. This is also explained in NHS England’s Children and Young People’s Eating Disorder guidance.
The NICE Guidelines on Transitions state that patients should be considered as an equal partner, alongside the clinicians, in the transitions process. This means that their views and needs should be taken into account. If appropriate, the person’s family members or carers should be included in this. Furthermore, a ‘named worker’ should be provided to begin to coordinate the transition at least 6 months before the transfer. They should be leading the transition and ensure that the new teams are working together to ensure a smooth and gradual transition.
What you could do to overturn this decision (or ensure the guidance is being followed):
There are several reasons you might transition between services, such as moving away for university, work, or personal reasons. If you remain within the same area, you can usually continue with the same service. However, you may need to transfer to another service. These transitions can be challenging, as your clinicians and treatments may change, but they can be managed well with clear communication. Importantly, if you are still struggling with your eating disorder, your current service should not discharge you until you have been successfully transitioned to a new service that can continue your care. More about this can be read on the NICE guidelines website.
The NICE Guidelines for eating disorders highlight the importance of services taking particular care to ensure that services are well coordinated when people need care in different locations.
The NICE Quality Standard outline how care should be taken for those moving between services and highlights that poor communication can lead to inconsistencies in messages but also management. They call for transition protocols to be followed which will ensure that treatment and support is not compromised by the transition.
The Royal College of Psychiatrists which covers all four nations across the UK has also produced guidance for good practice in managing transitions. To make sure you are getting the information and support you need during a transition, you may want to follow the below:
Moving to inpatient care can seem scary, especially if you have not been provided information about your new type of support. Transitions between services can be difficult as clinicians and treatments will likely change. Nevertheless, they can be managed well if everyone communicates effectively.
The NICE Guidelines for Eating Disorders explain that when a person is admitted to inpatient care, specialist eating disorder services should keep in contact with the inpatient team to advise on care and management, before the admission, during the admission and when planning discharge.
A care plan should be developed for each person with an eating disorder who is admitted to inpatient care which gives clear objectives and outcomes for the admission, how they will be discharged and how they will move back to community-based care. Within one month of admission, there should be a review with the patient, their carers, and the referring team of whether inpatient care should be continued or stepped down to a less intensive setting. This may include day patient support or intensive community treatment.
The NICE Quality Standard outlines how care should be taken for those moving between services and highlights that poor communication can lead to inconsistencies in messages but also management. They call for transition protocols to be followed which will ensure that treatment and support is not compromised by the transition.
The NICE Guidelines on Transitions between inpatient mental health settings and community or care home settings sets out that the needs and wishes of the person should be recorded at each stage of transition planning and review. It highlights the importance of people being allowed to maintain links with their home community, especially if people are in mental health units outside the area in which they live.
The Royal College of Psychiatrists which covers all four nations has produced guidance for good practice in managing transitions. To make sure you are getting the information and support you need during a transition, you may want to follow the below:
Leaving inpatient care can seem scary, especially if you have not been provided information about your new type of support. Transitions between services can be difficult as clinician’s and treatments will likely change. Nevertheless, they can be managed well if everyone communicates effectively.
The NICE guidelines for eating disorders explain that when a person is admitted to inpatient care, specialist eating disorder services should keep in contact with the inpatient team to advise on care and management, before the admission, during the admission and when planning discharge. Furthermore, a care plan should have been developed which will outline how they will move the patient back to community-based care.
The guidelines also state that inpatient services should collaborate with other teams, including the community eating disorder service, to help with the transition.
The NICE Guideline on Transitions between inpatient mental health settings and community or care home settings states that if more than one team is involved in a person’s transition, ongoing communication between them is essential. Furthermore, it is expected that discharge is planned with the person and their carers (if appropriate) so that the person does not feel their discharge is sudden or premature.
The Royal College of Psychiatrists which covers all four nations has also produced guidance for good practice in managing transitions. To make sure you are getting the information and support you need during a transition, you may want to follow the below:
The NICE guidelines are used in England which cover recommendations based on the current evidence for best practice in the management of people with eating disorders. To read the guidelines further, you can head to the NICE guidelines website.
There might be a good reason your service is offering a different treatment to the one recommended in the guidelines, but it might also be the result of under-staffing or cost-saving. If this is the case, you still deserve treatment in line with best practice and to be given an opportunity to share your opinions.
The government states that it is against the law to discriminate against anyone because of the following: age, gender reassignment, being married or in a civil partnership, being pregnant or on maternity leave, disability, race including colour, nationality, ethnic or national origin, religion or belief, sex or sexual orientation.
There are a number of legal and policy frameworks, such as the Race Quality Framework, that emphasise the importance of public services, such as the NHS, ensuring that members of diverse communities have access to good-quality care and treatment.
The NICE Quality Standard state that considerations should be made for equality and diversity. Care planning should take into account the individual needs of the person with the eating disorder and that support should be supplied in a format that suits the person’s needs and preferences.
Furthermore, the standards explain that support should be culturally, age and gender appropriate and should be accessible to those who do not speak or read English. If an interpreter or advocate is needed, people should be able to access these.
For those with additional support needs related to a disability then information should be provided as set out in NHS England’s Accessible Information Standard.
If you feel as though your protected characteristics are not being considered in services, you may choose to follow the below step:
No one should be discriminated against for any reason. If you feel as though you are being discriminated against within your healthcare, the Citizens Advice Bureau has information and advice on steps you can take by heading to the Citizen's Advice website.
Guidance from NHS England states that shared decision-making means people are supported to understand the care, treatment and support options available as well as the risks, benefits and consequences of those options. They should then be able to make a decision about a preferred course of action.
The NICE Guidelines state that if you are starting or already receiving treatment, you should have the chance to share your views about your care. You and your healthcare professionals should work together to make joint decisions about the support you receive. Some, however, feel they are not given a choice, and that decisions about their care are made for them without the opportunity to share their views.
If you haven’t been given the opportunity to share your views, you may choose to do the below:
Accessing information and support about your loved one’s eating disorder can be invaluable, offering both reassurance and understanding. Below, we outline the information and support you are entitled to as a carer. You can also find further resources on our website, and our Helpline team is available to provide support and information as well.
The NICE Guidelines state that when assessing a person for an eating disorder, what they and their carers know about eating disorders should be addressed. Furthermore, the guidelines recognise that, when communicating with a person with an eating disorder, family members and carers may experience feelings of guilt or believe they are responsible for the illness. In the case that a loved one is admitted to inpatient care, the service should still keep the family members or carers involved to help with treatment and transition, when appropriate.
The NICE Guidelines on Supporting Adult Carers, state that information and support should be provided and where this is done it should be plainly worded, clearly presented and that carers should be given the opportunity to ask questions. Carers should also have the opportunity to discuss their own needs separately from the person they are supporting.
A carer’s assessment can be provided by services which gives you the opportunity to tell services about the things that could make looking after your loved one easier for you. More on this can be found on the Contact website.
The same guidance outlines that carer training programmes should be offered to improve knowledge and coping skills of how to meet the needs of your loved one. In some instances, psychosocial and psychoeducational support can be provided which should include support and advice on how you can develop strategies to look after your own mental health.
NHS England Guidance on Adult Eating Disorders: Community, Inpatient and Intensive Day Patient Care Guidance for commissioners and providers also states that in instances where the person receiving treatment does not want their family or carers involved in the care, the community eating disorder service should still provide the family general information on eating disorders and signpost them toward appropriate support, resources and/or services.
It is important to note that guidelines also mention the importance of confidentiality for those with eating disorders. This means that some information about their treatment may not be shared with parents and carers. For example, details on what a loved one discusses with their therapist isn’t shared without consent. However, clinicians may share information about safeguarding concerns with parents and carers in some circumstances. Outside of this, the guidelines highlight the importance of parents and carers being offered information and support around eating disorders.
Sometimes though, families and carers are still not offered the information and support to which they are entitled. The step below is something that you can do to help you overturn that decision:
The Patient Advice and Liaison Service (PALS) have a remit which includes helping you resolve concerns or problems when using the NHS, telling you how to get more involved in your own healthcare and providing information on the NHS and the complaints procedure.
When contacting PALS, you can say that you want the decision that has been made reversing quickly so you or your loved one can get the treatment they need in accordance with the NICE Guidelines. Ask them to speak to the appropriate clinician to reverse the decision.
You can find details of your PALS office by asking at your hospital or GP surgery reception. Alternatively, you can find details of your PALS office here.
A concise letter will be more effective and get a quicker response. You could say that you don’t want to complain but just want the decision reversing so you or your loved one can get the treatment they need and that the guidelines state you (or your loved one) should receive. Ask them to ask the appropriate clinician to reverse the decision.
You can find the name of the Chief Executive on the Health Trust website (try the ‘about us’ or ‘corporate information’ sections), or on information boards in hospitals, or through an internet search.
Whilst contacting your local politician may seem daunting, they often welcome the opportunity to support constituents with specific difficulties, particularly if they can achieve a result. An intervention from a local politician may therefore help your GP, Trust, or eating disorder service to reconsider a decision.
Most politicians hold regular surgeries in their constituencies, commonly on Fridays, where you can ask them to intervene on your behalf. In England, you can contact your MP (Member of Parliament). You do not have a choice which MP you can contact, you will only be able to contact your MP who represents your constituency. To find the email address and phone number of your MP, heading to the Parliament website.
When contacting your MP by email or phone, you may wish to share or mention the following so that they can work together with Beat to ensure you get the support that you, or your loved one, deserves in line with the clinical guidelines:
"Beat Eating Disorders provides support and information about eating disorders. One of their services is a politician advisory service that helps people challenge decisions that do not align with clinical guidelines. Through this service, politicians can seek guidance on how to contest these decisions and understand what the guidelines recommend so that they can help their constituents access care and treatment. Their website and sign-up form can be found on Beat's website.”
If you've not been able to overturn a bad decision, you may wish to make a formal complaint. The NHS complaints process can differ depending on what service you are complaining about.
If you are wanting to complain about a clinician in a GP practice, you can contact the Practice Manager. You will usually find their name and email address on the practice website. Alternatively, you can call up the practice, and the receptionist will be able to tell you these details.
If you want to complain about a mental health or eating disorder service, you can contact the patients' complaints or patient relations team. You can find their details by heading to the NHS England website.
If your complaint remains unresolved, the final stage is to take it to the health ombudsman. They are an independent service which can make final decisions about a complaint, and they may make recommendations for an organisation, such as the NHS, to correct their actions.
Remember, if at any point you need support or information surrounding the decisions that a service or clinician has made, do contact our Helpline team. If you have any feedback about this page or if this page has helped you overturn a decision, please let us know via our online form.