If in the course of you 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.
Bad decisions often result from the decision maker not having full information or not having been trained properly about eating disorders. Sometimes, though, they are the result of an NHS policy or commissioning decision.
Sometimes a correct decision about your treatment may feel like a bad one 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 clarity. However, it’s not designed to help you overturn appropriate decisions that you disagree with.
In all cases, you will be better equipped to challenge decisions if you have a good knowledge of eating disorders – the information elsewhere on our web site will be useful, and our Helpline will be able to guide you towards useful sections if you’re not clear.
This information focuses on overturning bad decisions rather than complaining about them, as our priority should be to ensure the best treatment for you or your loved one as quickly as possible. Sometimes though it’s necessary to take things further or to make a complaint, and there is information on how to do this here as well.
If the decision you’re trying to reverse or understand isn’t listed here, please tell us and we’ll do what we can to add useful information.
This page often refers to the NICE guidelines for eating disorders. Although NICE guidance is developed for England, it also tends to be used in Wales, Northern Ireland and Scotland. The Scottish QIS recommendations were published to build upon the NICE guidelines, taking into account the Scottish landscape. The Scottish Intercollegiate Guidelines Network (SIGN) for Scotland also provide evidence based guidelines about how to treat different illnesses, including eating disorders.
The NICE guidelines for eating disorders recommend that GPs make an immediate referral to a community-based, age-appropriate eating disorder service for a specialist assessment if an eating disorder is suspected, since people with eating disorders should receive treatment at the earliest opportunity. Some GPs haven’t been trained in eating disorders and so aren't aware of how serious they are or know that they require specialist treatment. 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.
If your GP did not make a referral to a specialist eating disorder service, this does not mean you do not need or deserve the help – it is important that you continue to seek help. And don’t worry about challenging a GP’s decision – they want to make good decisions, but sometimes haven’t had much training in this area.
What you could do to overturn that decision:
Book another appointment, ideally with a different GP in the surgery
In many cases, this may be enough to get the referral you need. Ask the receptionist if there is a GP with a specialist interest in mental health that you could make the appointment with.
You might be able to refer yourself to your local eating disorder service without needing to go through your GP.
All children and adolescent eating disorder services in England are required to accept self-referrals by March 2022 and many already do this. Some adult services and children and adolescent services outside England may also accept self-referral, but are not yet required to.
Speak to the Practice Manager
Following referral, you should receive an assessment appointment at a specialist eating disorder service. If this does not happen, this does not mean that you do not need or deserve help. The NICE guidelines state that anyone suspected of an eating disorder should receive an assessment. In England, the NHS is expected to assess all under-19s within a maximum of four weeks of a referral with a suspected eating disorder.
Equivalent standards specific to eating disorders do not yet exist for Northern Ireland, Scotland or Wales. However, they do have general mental health waiting time targets.
In Scotland, the Local Delivery Plan (LDP) Standards state that patients should not have to wait more than 18 weeks from referral to the start of psychological therapy.
In Wales, the Welsh Government state that people referred for a mental health assessment with a primary mental health support service should be assessed within four weeks of a referral, and treatment should begin within four weeks of an assessment. Any patients referred to specialist CAMHS should be assessed and any treatment initiated within 16 weeks.
In Northern Ireland, the Northern Ireland Executive set a Ministerial target that by March 2019, at least 50% of people should wait no longer than nine weeks from referral, to their initial ‘consultant-led’ outpatient appointment, and no one should wait more than 52 weeks.
What you could do to overturn that decision (or understand it better):
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.
The NICE guidelines state that family and carers should be offered information on the nature of eating disorders and the available treatments when a loved one is diagnosed. They should also be offered an assessment of their own needs due to the impact that the eating disorder may have on them and their own mental health. NHS England also encourages health care providers to assess and support carers’ needs.
Despite these guidelines, families and carers are often not offered the information and support to which they are entitled.
Information for carers and families can also be found here, while the Helpline and online support groups are available for anyone affected by an eating disorder.
As a family member or carer, you can play an important part in your loved one’s recovery. However, there may be times when you are denied information about your loved one’s treatment and how they are doing.
Young people of 16 and 17 years are presumed to have the capacity to consent to medical treatment and are entitled to the same confidentiality as adults. If the patient lacks the capacity to consent prior to the age of 18 years in England, Wales and Northern Ireland, and before 16 years in Scotland, whoever has parental responsibility can give consent to investigations and treatment that are in the best interests of the young person.
These rules around confidentiality may mean that a clinician cannot tell you information specific to your loved one. Nevertheless, as a carer you should be given the opportunity to ask a healthcare professional about the illness in general. You can reasonably be expected to receive information about evidence-based treatment, any danger signs to suggest your loved one is at risk physically, and what you should do if you are concerned about your loved one’s safety.
If you’re not getting useful information about your loved one’s illness, you can:
The NICE guidelines set out a number of evidence-based treatments which are recommended for treating different eating disorders.
There might be a good reason your service is offering a different treatment, but it might also be the result of under-staffing or cost-saving.
There are several reasons you might transition between services, including switching from child and adolescent mental health services (CAMHS) to adult eating disorder services when you turn 18 or 19, or if you move house, or go to university, or if you go into (or leave) hospital, for example. These transitions can be difficult as your clinicians and treatments will probably change. Nevertheless, they can be managed well if everyone communicates effectively.
Both you and your carers should receive full and timely information and good support surrounding the transition, alongside a care plan that is agreed by all. For transitions between CAMHS and adult services, a key worker should be appointed to support both the patient and carer.
The Royal College of Psychiatrists has produced guidance for good practice in managing transitions. However, sometimes this isn’t followed.
What you could do to make sure you get the information and support you need during a transition:
If the actions we’ve suggested here haven’t worked, there are other things you could try that could help overturn a bad decision.
The Patient Advice and Liaison Service (PALS) in England and Wales and the Patient Advice and Support Service (PASS) in Scotland have a remit which includes helping you to resolve problems when using the NHS. PASS specifically states that it can help you to access the treatment, care and support you need.
In Northern Ireland, the Patient and Client Council exists principally as a complaints support service but should also be able to help you raise concerns and achieve an informal resolution directly with your care provider.
Say that you want the decision reversing quickly so you or your loved one can get the treatment they need and that NICE says they should receive. Ask them to ask the appropriate clinician to reverse the decision.
PALS and PASS can also help if you decide to make a formal complaint.
A concise letter will be more effective and get a quicker response. 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 NICE says they should receive. Ask him or her to ask the appropriate clinician to reverse the decision.
Political representatives often welcome the opportunity to support constituents with specific difficulties, particularly if they can achieve a result. An intervention from the local politician may therefore help your GP, Trust, Health Board or eating disorder service to reconsider a bad decision.
You might also try to enlist the support of your local councillor.
If you've not been able to overturn a bad decision, you may wish to make a formal complaint. The NHS complaints process is different in each part of the UK.
Further information is available on the relevant websites:
If your complaint remains unresolved, the final stage is to take it to the ombudsman. Again, the process is different in each part of the UK. Information on how to contact the ombudsman can be found on the same pages as the complaints information.