Recommendations

Followed by RANZCP Anorexia Nervosa treatment guide for consumers and carers

Choosing a treatment team will be based on many factors such as availability and affordability of services within a local area. Personal compatibility with the clinicians can be helpful and is generally considered crucial once a person is genuine about wanting to recover. In the stage where the person is ambivalent about recovery, no one may be acceptable or good enough. This can be very trying for family members who are keen to see the person in treatment, but rejections can be quite common. In fact the person can trail from clinic to clinic, doctor to counsellor, all the time trying to find the ‘right person’, but in reality, they are demonstrating their fear about letting go of their eating disorder. Sometimes of course the help they are being offered is extremely poor and their reluctance to engage in treatment is a most realistic response. If you do not know where to seek help in NSW or have your doubts about the adequacy of the treatments offered, contact the The Eating Disorder Foundation information line.

Generally, The Eating Disorder Foundation recommends that you seek help from:

  • A multidisciplinary team - as these disorders have a physical, psychological, emotional, developmental and nutritional component.
  • Medical involvement is essential.

Things to Consider

Qualifications

Check that your practitioner has appropriate qualifications and that they have membership of the relevant professional body. eg College of Psychiatrists (RANZCP) or the Association of Social Workers (AASW) You can contact the associations if you are in doubt. If you see someone outside of professional bodies (as is your right), you may not have anyone to assist or complain to if you are not happy about the standard of care.

Experience

It is worth asking your practitioner about their training and their experience. How long have they been working in the field and is this part of their caseload or their specialty? What sort of professional liaison do they maintain with others in the field? If you have great trust in a particular person and want to continue treatment with them, you may like to provide them with up-to-date information about eating disorders from The Eating Disorder Foundation.

Rapport

If you are going to share with your therapist/doctor some of the most worrying and frightening parts of your life, then trust becomes a critical factor. If you do not feel comfortable with that practitioner, then it is unlikely you will take all the difficult, tough stuff to the therapy. Trust is not always instantaneous so encourage the person to attend several times before making a final decision. Sometimes the communication style is so woeful that a second visit would be harmful! Remember that therapists work in different ways and no two people will necessarily have identical judgements.

Access

Financial

Treatments can be very long term, and because more than one practitioner is involved, costs can mount very rapidly. Be very clear about the cost (and frequency) of the sessions. Find out what is rebate-able by Medicare and/or private insurance. Public hospitals in NSW that offer specialist services at no direct cost are few and far between, and the waiting times for outpatient treatment can be cruelly long. Admissions are sometimes made on a crisis basis through Accident & Emergency, but this is not common and is not necessarily the pathway to extensive treatment. It is more likely that you will receive urgent medical treatment only and be discharged to the care of your own treatment team.

Private hospitals particularly are very expensive, so check with your insurer before agreeing to any admission. Be clear about what you are covered for with private insurance and if there are any waiting lists or exclusions. Parents who are desperate will often pay ‘anything’, but the level of personal insolvency incurred is no indicator of a positive outcome. Families can feel very guilty if they are unable to provide ‘the best’, but sometimes money can be wasted and the family end up with debts and stress that threaten to overwhelm them. Do what you can- but sometimes the person needs to take some financial responsibility. If you cannot afford any treatment in the private sector, contact The Eating Disorder Foundation to find out what public hospitals and community health centres are offering treatment. There may be a waiting list however. Perhaps there are some doctors who can see you under bulk billing arrangements?

Geographic

People who live in rural or remote areas may have no option but to travel vast distances to secure treatment. This can be extremely disruptive to family and career. If you do have to travel to eg Sydney to get treatment, enquire through the hospital social worker if you (or your family members) are eligible for some subsidy.

If you are organizing treatment without this limitation, keep in mind that treatments can be frequent and continue for months if not years. Consider the practicalities of this. Is it accessible by public transport or will I have to rely on someone to take me? Can appointments be arranged with minimal disruption to my work, school or other commitments?

Rights

Confidentiality

Health professionals usually practice under strict confidentiality guidelines, as determined by their professional associations. There can be exemptions; for instance in young children under 14, parents can be fully informed about consultations and make treatment decisions on their behalf; practitioners can inform others if they think the person is at risk of harm, either from themselves or from others. It is important that you clarify with the treatment team the limits of confidentiality.

It can be very difficult for parents or partners to be ‘kept in the dark’ about what happens in sessions. This is particularly so when their child or partner seems to be going backwards or making very little progress to justify the expense and the time and effort involved in getting them to treatment. Parents can feel very marginal to the whole process- it is as if the team have ‘taken over’ and left them in total ignorance about the best ways to help their family member .It can be very helpful in these circumstances if the person in treatment is willing to have some things discussed with the family. Perhaps the rules of engagement can be discussed early in treatment.

Second Opinion

If you are unhappy about the treatment you are receiving, or you are uncertain about the wisdom of treatment that has been recommended, it is quite appropriate to get a second opinion. You should not feel guilty about this or feel that you are being ‘disloyal’ in any way. You have the right to be as informed as you can be, and, because there in not one single view about what is the perfect treatment for eating disorders, different practitioners may have different views about the best way to proceed. Consult as broadly as you can-but check the qualifications and experience of the people who are advising you.

Changing Treatment Teams

If you are dissatisfied, you have the right to seek another treatment team. Be careful about leaping from person to person in the hope of the ‘miracle’ cure, or thinking that a practitioner with ‘charisma’ is all you need. Recovery can be hard work and so much comes down to your tolerance of change.
Giving Consent

Generally medical treatment cannot be give to you unless you give informed medical consent, except -

  • in an emergency
  • when you are unconscious
  • where someone is authorised by law to make a decision on your behalf
  • when you require medical treatment (as an involuntary patient or under a community treatment order - the Mental Health Act 1990)
  • where there is a Guardian appointed to make decisions on your behalf (the Guardianship Act 1987)
Rights of Parent and Child

Decisions about consent to treatment on behalf of children under 14 years is generally made by a parent. After this age, children may seek treatment and give consent on their own behalf or make decisions jointly with their parents.

Children have the right to be involved in decisions about their health and should be informed and allowed to make choices when they are mature enough to understand what is happening. In NSW a parent or guardian must provide consent if the child is under 14 years of age.

Information about your treatment

You should be give, information about your condition, possible treatments and the risks involved, and you should understand all this before giving your consent. An interpreter should be provided if you need one. Ask questions re -

  • an explanation of your condition including results of tests or procedures
  • the degree of uncertainty regarding the diagnosis
  • the treatment options available including the proposed treatment, expected benefits, when treatment would start, length of treatment and costs involved
  • the name, position, qualifications and experience of health workers who are carrying out a procedure
  • the availability and cost of any services you will require

When the illness has gone too far

There are regulations that apply in different states and jurisdictions about what you can do when you fear for the safety of your family member. Please check with your relevant state organization. In NSW, the various legal avenues are described in out pamphlet How worried are you? Treatment options when the illness has gone too far which can be obtained from our order form.

Keep in mind that compulsory forms of treatment are not always welcomed by person, nor can they be imposed for trivial reasons. It is a huge responsibility, but there are times when they must be sought due to the immediate risks to the life of the person. The aim will always be to preserve the life of that person, but the overall recovery may take many years beyond that.

Anorexia Nervosa treatment guide for consumers and carers

Royal Australian and New Zealand College of Psychiatrists

Objectives

The guide contains the latest research available on anorexia nervosa and recommendations from recovered consumers, to assist you to chose the best kind of treatment. It aims to:

  • help consumers to make decisions about their treatment;
  • outline the value of interventions at critical times such as diagnosis, admission and discharge; and
  • guide on the standard of services to expect.

This treatment clinical practice guideline is for adolescents and adults who have anorexia nervosa or who believe they are at risk of developing it. It may also assist family members or carers. Its development was part of a project to develop clinical practice guidelines for professionals involved in the treatment of anorexia nervosa and is for use in Australia and New Zealand. The guide was commissioned by the Royal Australian and New Zealand College of Psychiatrists (RANZCP) with funding from both countries. Guidelines for health professionals and for consumers/carers were developed on five other topics.

This guide was researched and developed by consumers and carers. It is an evidence based guideline as defined by the National Health and Medical Research Council which means that it is based on research and not just opinion. Where opinion is used, it contains recommendations from 118 ‘guidelines’ made by carers and consumers where there are gaps in the scientific research evidence. Our method is outlined in full in Appendix 1.

Download the Consumer Guidelines (PDF document 132KB).