A letter of recommendations addressed to SLaM, drawn up along with another mother, who lost her son, Simba, to suicide:
“The laws that govern the relationship between professionals and patients namely: the Data Protection Act (1998), the common law duty of confidentiality, and the Human Rights Act (1998) are all silent about the nature of the relationship between professionals and carers. This is because these laws regard each citizen as an autonomous agent capable of making decisions with regard to their own rights.
The Common Law Duty of Confidentiality in particular has been derived from the millennials-old Socratic oath taken by doctors, which is absolutist in its injunction stipulating that there is no condition under which doctor-patient confidentiality may be broken. The 21st century has witnessed a significant shift in the doctor –patient relationships as well as, increasingly, in the doctor-patient-carer relationships. The increasing need to care for patients outside of hospitals and within communities or in their homes, has necessitated a requirement for greater collaboration between professionals and carers.
Given the pivotal roles of carers in the management of service users, the professional’s duty to share information with carers is covered by the 7th Caldicott principle: the duty to share information can be as important as the duty to protect patient confidentiality.
As carers who have had first-hand experience of caring for loved ones, we set out below some recommendations which we believe will help professionals and carers in working more effectively together for the well-being of service users and carers.
- Patients should be actively encouraged to nominate someone they trust in their care, right from the beginning. This practice should be so well engrained that the nominated person becomes an integral part of the process of care and recovery. It is also recognised that a patient may nominate a trusted person who is a friend to attend meetings instead of a family member, as the presence of the relative may inhibit frank and honest disclosures with professionals. For example, in CAMHS a young person may trust a friend to advocate for them more than they trust their parents. If this is the case, the right of the carer or next of kin to be kept informed of the care plan should also be respected, so that they are not left out of planning and can continue to care effectively.
This recommendation is particularly relevant if the service user lives with the carer.
2. At the time of diagnosis, accurate information about the nature of the illness and the choice of treatments should be given to the carers, in written and verbal form or on- line if such facility exists. They should be made aware of their rights as carers and encouraged to partner with health professionals in the care of the patient. They should also be given realistic information about the natural course and mortality of the illness. This may mean spending more time with patients and carers at consultations, and the need for additional support services.
3. Carers should be provided with the following:
– Diagnosis or working diagnosis of the psychiatric condition
– List of symptoms to look out for.
– A management plan.
– Choices of treatment.
– Possible side-effects of any medication.
– Possible roles for the carer in managing symptoms.
– Sources of support for the carer, for example pamphlets or online resources.
- Professionals must remember the following when working with carers:
– To be more transparent in their communication with carers.
– To anticipate the carers need for information, providing necessary information about the nature of illness and available services even if the carer does not directly ask for this.
– To have empathy and willingness to engage carers and build a trusting relationship.
– To consider that carers may need practical support in order to be effective carers.
- The carers must be educated and empowered with knowledge about the psychiatric condition. They should be made to feel involved in the process of care, especially if the patients are being cared for in the community. Crisis teams and early intervention teams should engage members of the family in the care package.
- It needs to be understood that carers are a valuable resource, and must be listened to, as they spend more time with the patient than professionals do, and therefore will know them well. Even when service users instruct teams not to see their families, professionals should always meet with the families for collateral history, and especially if the family requests to be seen by a professional. Carers and friends know their relatives well enough to see early warning signs, and should be encouraged to share such information if necessary, in confidence with professionals especially if the service user is too ill to give consent because they are lacking in insight.
- Carers’ perspectives should be part of the training curriculum for junior doctors and medical students wherever possible.
- Patients should not be discharged from one team to another or from specialist care to primary care without arranging an early follow-up date. Given the risk of patients falling through cracks in the service following discharge, carers should be given adequate information about service structures and not merely told to go to the GP or the local AE in crisis situations.
- Decision making around the timing of discharge should be properly scrutinised, as premature discharge could have disastrous consequences.
- Discharge plans should include information for carers about the following:
-What are the warning signs to watch out for?
-What service number to call?
-How quickly one can expect help to arrive.
-Where to go in day/night time in a crisis.
- GPs must also understand the importance of engaging with carers, listening to them, and sharing important information.
- Community teams should engage patients and families in discharge planning. Where necessary, designing a crisis plan should be a joint enterprise between teams and patient and family. Carers should be involved in the design of the plan, and be given a copy of the finished document. Professionals must anticipate any problems with the patient and share them with carers at the time of discharge.
- Organisational structures should be redesigned to address the problems brought on by the strict compartmentalisation of services. This can be a hindrance to the provision of safe and efficient patient care.
- Mishaps and suicides should be investigated within a week, with the intention of learning lessons and preventing future serious incidences due to the same causes. Carers should be involved in this process, in order to hear the story from their point of view and arrive at real answers. Defensive investigations do not add to learning or patient safety. Contact with families must be at the earliest possible time following death or serious incidents. This is the time when families are most vulnerable and require information about their loved ones from those who were present. Legal considerations of blameworthiness should not prevent staff from empathetic consideration and communication with the bereaved families. Likewise, protracted legal processes should not be allowed to stop the trust from reaching out to bereaved families. Carers understand that staff may feel vulnerable following serious incidents but it should be understood that carers feel equally vulnerable and unlike professionals, may have no access to support networks at such times.
- At Coroner’s inquests, the trust should send representatives who have a deep knowledge of the case and who will not hide behind jargon.