ED Transitions Module 4
Involving Parents and Carers

Jenny Langley, lived experience carer and author, describes two basic tenets of eating disorder treatment:

1. Carers are entitled to be treated with respect and have their role valued and their efforts acknowledged by the care team.
2. Carers should always be listened to and should never be excluded from a care plan particularly when the care team are assessing risk.

Beyond these basic tenets, the wishes of the young person of course need to be taken fully into account and confidentiality wishes of all parties should be noted carefully and reviewed regularly, in line with international guidance on Patient-Carer-Professional Partnerships. Relationships between carers and young people can naturally change around the time of transitions; whilst some relationships may encounter new challenges, others may improve or simply change in dynamic over time.

Parental involvement in treatment will vary according to the individual circumstances, wishes, values and culture of each family but many young people and their parents will want to work together in the best interests of recovery. 

Clinicians, family and the young person can be a strong force for change together and it’s important that issues around communication are addressed at the outset of treatment and adapted along the way (depending on the stage of recovery).

It can be especially helpful to agree early on in treatment with the young person, how they wish to have their family members involved, or not, in their treatment. The involvement of parents or any other family member in treatment is likely to be far more effective when it has been agreed and directed by the young person.

Under the NICE Guidelines; General Principles of Care in the treatment of Anorexia Nervosa, it is recommended that families are involved during the process of assessment and treatment (as appropriate).

Furthermore, some treatment approaches necessitate parental involvement.  This is the case in Family Therapy for Anorexia Nervosa (FT-AN) and Family Therapy for Bulimia Nervosa (FT-BN). When working with children and young people with the relevant diagnosis, therapeutic approaches that involved the family are considered the first line treatment, unless considered “unacceptable, contraindicated or ineffective”.

For some families, this will involve parents attending appointments with the young person. For others this will mean accessing carers support groups and/or carers skills training only.

Occasionally, parents may want the opportunity to speak with the young person’s clinician/therapist separately.  Therapists need to be transparent with the young person about this and parents are advised to let the young person know that they have requested this and, ideally, what they will be speaking about, where it is safe to do so.  In some instances, parents may speak to a different member of the team. 

It is also worth considering "one-way" forms of communication wherein carers can contact clinicians with information they feel is relevant (e.g. if the service user is engaged in high risk behaviours) without the expectation of reply. Email may be an appropriate channel for this type of communication.

All of these specificities around communication with supporters and carers need to be carefully addressed and thought through.

Additional resource: Parental perspectives on navigating the transition process and suggestions for improvement (Kan et al., 2021)

Capacity

People aged 16 years-old and over are presumed in law to have capacity to make decisions about their treatment (under Section 8 of the Family Law Reform Act 1969) .  Parents cannot override consent or refusal to treatment in competent 16/17 year-olds.  Neither can they consent on behalf of their competent 16/17 year-old.  However, in most instances, it is commonly regarded as good practice for parents or carers to be included in health care planning as they are often best placed to support the young person with their treatment.

Parental Rights

Mothers have intrinsic legal authority or Parental Responsibility over their children up to the age of 18 years (s3(1) Children Act 1989). This is unless someone else is appointed as a Legal Guardian via a court.  Fathers who are married to the mother also automatically have Parental Responsibility. Alternatively, fathers who are named on the birth certificate will also have Parental Responsibility. This means that where important decisions have to be taken, mothers and married fathers are legally allowed to have a say.  The law in relation to second female or male parents is different.

Confidentiality & Information Sharing

The same duty of confidentiality applies to young people (and children) as it does to adults.  However, young people are often happy for information to be shared and many will assume information will be shared, having been used to this. Furthermore, most parents want to be able to support their child’s treatment and welcome guidance from professionals.

It is good practice to ask the young person if and what information they agree can be shared, and with who.  For example, some young people are happy for parents to know what the care plan is but they want to communicate this themselves and they do not want parents to know what is talked about in one-to-one sessions.  Others feel comfortable with parents knowing some content of one-to-one sessions, perhaps where it is considered conducive to their recovery or circumstances, and want this conversation to take place within an appointment. Others are happy for parents and staff to talk directly, in which case it is advisable to agree with parents that they let the young person know what is being discussed and why.

The young person’s wishes and consent in relation to confidentiality (and their carers’ wishes where applicable) should be recorded within their notes so that it can be easily seen by other professionals.  It can also be helpful to set an alert within the system notes that this decision is reviewed regularly as situations can change rapidly during treatment. It is important to note that the same universal limits to confidentiality apply to under 18’s as over 18.  That is, where the young person’s safety or the safety of another person may be at risk, it may be necessary to break confidentiality.

Watch two roleplay videos below exploring higher and lower risk scenarios involving young people transitioning from CAEDS to AEDS:

Jenny Langley suggests that there are a number of ways carers can be involved in their loved one’s treatment even when consent is not given.

These could include:

1. Respecting consent whilst maintaining connections with parents and carers (e.g. implementing “one way” comms wherein parents can agree to send teams information they feel is relevant about their loved one whilst understanding they will not receive information back)
2. Providing information on who in the team is in charge of the overall care plan.
3. Informing carers about who is providing day to day care, including meal support.
4. Explaining what different professionals do and how often they provide either 1:1 sessions, group sessions or other types of support and therapy.
5. Outlining how often risk is assessed and what the parameters are.
6. Outlining how often the review meetings are held.
7. Inviting carers to Care Planning meetings.
8. Providing practical support and information to help develop compassionate communication skills with their loved one.
9. Proving information about the diagnosis, and prognosis.
10. Having conversations with parents and carers about consent.
11. Having conversations with service users about consent and the implications for their carers.
12. Having conversations with parents and young people to clarify circumstances where high risk situations may necessitate changes to how confidentiality preferences are observed.

Additionally, in cases where consent for information sharing is not given, it may be possible for parents to be assigned a clinician not involved in the care of the young person in question as a point of contact. This clinician can give generic advice and listen to concerns from the parent or carer, whilst the young person remains reassured that confidentiality is being respected.

"Inform carers if/when consent is withdrawn – otherwise they can be dangerously deceived that all is well because they believe services would have told them if there was deterioration/serious risk (as per an earlier agreement, for which consent has since been withdrawn)."

- Withdrawing consent - Lived experience carer

"The care team should ascertain what information carers already know, as any such information should not be treated as confidential. If you can provide a concise written summary of what you know already this can be extremely helpful. It is good practice for each care team to have a separate file for carers and your list could be a useful prompt for a file to be set up at the earliest stage. In addition, carers have the same rights to confidentiality as the patient and so information you provide should not be repeated to the patient unless you give permission."

- Understanding the boundaries of consent - Lived experience carer

Planning for crises

A key concern for carers is often knowing what to do in a crisis situation, which can seem especially daunting if they perceive communication with the care team is impacted by confidentiality. It is crucial that carers are always given clear advice on what to do in an emergency:

• Advice on managing the behaviour in the home and wider community, particularly in a crisis situation, and how to seek crisis support both in and out of usual working hours.
• Contact details of the care co-ordinator and assurance that when you make contact you will get a response.

"One of the things carers struggle with most is what to do in an emergency and very often the guidance is “if you are worried go to A&E”. Try to establish at an early stage if the service has an out of hours helpline, who your main point of contact is, and what to do if it is an emergency that would be better dealt with by a specialist mental health team who knows your loved one, rather than A&E who will not be equipped with your loved one’s medical history or care plan."

- Planning for emergencies - Lived experience carer

Recognising why carers may feel unhappy or aggrieved

Carers are often put under immense pressure as a result of the illness experienced by their loved one. The transition period brings additional complexities and concerns for parents who may feel that any hard-won progress in terms of accessing CAEDS treatment may be at risk. On top of this, changes in confidentiality may feel like another barrier being put up by the 'system', making helping their loved one even more difficult.

"Carers are often at their ‘wits end’ by the time their loved one actually gets to see a mental health professional. They may have watched helplessly as their loved one has deteriorated and become more and more entrenched in their eating disorder behaviours. They are likely to have done much research and discovered that early intervention is crucial, but then had to face up to the stark reality that the NHS is so under resourced that crisis care is all that can be offered. All they want to do is help their loved one, but the system seems to them to be feeding the eating disorder, not treating it. This process can be lengthy and go on for many months."

- Navigating barriers - Lived experience carer

"Carers can also face problems with information sharing. They might notice that their loved one’s physical condition is deteriorating fast but their child might not realise how unwell she /he is and might not want professionals to be contacted. If they contact services their loved one might then accuse them of breaching her/ his trust and confidentiality. This is a judgement call and difficult to handle for all.  Carers can base their judgement on their knowledge and intuition and explain their reasoning to the mental health team and later to their loved one. The safety of the patient, psychologically and physically is the most important issue and discussions and decisions must include all those involved in providing care, in a transparent fashion."

- Worrying about risk - Lived experience carer

When talking to parents and carers, remember that it is an extremely anxiety provoking time for all involved. They may not be in a place to be able to communicate in a measured way and might need a lot of support and reassurance.

Parents and carers are often invited to psychoeducation and communication skills workshops. Some of the principles that are taught within these sessions also apply to our approach and communication style towards the young person and their families.

Some key points to remember when communicating with patients and carers (7 Cs):