Yet, do we or the Health Service truly value them? Listen to them? Include them? Give them a voice? Understand their concerns? Treat them as an ally? Respect their abilities and contributions? Answer their questions? Educate them? Empower them? Support them? Partner with them as well as we could? Sadly not.
In my experience and that of many other families of individuals with a mental illness, the power imbalance between the health care providers and the service users does not allow for an equitable relationship. Hence, denying the patient the best chances of recovery. There is national and local evidence that proves that carer engagement saves lives.
Triangulation of services is essential for best outcomes for patients and professionals. Risk averse practices may help reduce risk in the short term but may increase risk in the long term. A recovery approach to risk and development of a “life worth living” may have longer lasting benefits through rebuilding relationships, increasing service-users skills and confidence in collaboration with carers.
Norfolk and Suffolk Foundation Trust (NSFT) have developed a program called “Stepping Back Safely” up-skilling staff, carers and service-users. It is based on five main drivers of Recovery: CHIME
NSFT are offering free training in Stepping back Safely in July 2021 on-line. Having heard many stories where a life could have been saved only if there was a meaningful and effective communication between the three parts of the Triangle of Care, I think this training is most relevant and essential. I shall be taking it as I am sure it will deepen my understanding of the subject. If you or anyone you know might like a point of contact, here it is: firstname.lastname@example.org
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.
He’s her son. His mother, Em, lives with Bipolar Disorder.
Here he describes how he feels about the depressive phase of her illness.
I know that feeling.
“As if it were a wild animal with flecks of foam at its mouth, I feared her depression.
Imagine you were walking in a pleasant meadow with someone you love, your mother. It’s warm and there’s just enough of a breeze to cool you. You can smell earth and cut grass and something of a herb garden. Lunch is a happy memory in your stomach and dinner awaits you – a three course meal you have devised – all your comfort foods. The light is golden with a touch of blue, as if the sky were leaking.
Suddenly, your mother steps into a patch of quicksand. The world continues to be idyllic and inviting for you but your mother is being sucked into the centre of the earth. She makes it worse by smiling bravely, by telling you to go on, to leave her there, the man with the broken leg on the Arctic expedition who says ‘Come back for me, it’s my best chance, ’because the lie allows everyone to believe that they are not abandoning him to die.
Some part of you walks on and some part of you is frozen there, watching the spectacle. You want to stay but you must go. The imperium of the world’s timetable will allow you to break step and fall out for a while, but it will abandon you too if you linger too long by your mother, now a curled up foetal ball, moaning in pain, breathing only because her body forces her to.
Granny loved Em and she thought that should be enough. It wasn’t. Love is never enough. Madness is enough. It is complete, sufficient unto itself. You can only stand outside it, as a woman might stand outside a prison in which her lover is locked up. From time to time a well-loved face will peer out and love floods back. A scrap of cloth flutters and it becomes a sign and a code and a message and all that you want it to be. Then it vanishes and you are outside the dark tower again. At times, when I was young, I wanted to be inside the tower so I could understand what it was like. But I knew even then that I did not want to be a permanent resident of the tower. I wanted to visit but visiting meant nothing because you could always leave. You’re a tourist. She’s a resident.”
Source: ‘Em and the Big Hoom’ a profoundly moving book by Jerry Pinto, winner of the Crossword Book Award 2013.
The Francis report concluded that patients were routinely neglected by a trust that was preoccupied with cost cutting, targets and processes and lost sight of its fundamental responsibility to provide safe care. An estimated 400 to 1,200 people could have died unnecessarily there between 2005 and 2008. In addition, the inquiry heard that receptionists in the accident and emergency department had regularly triaged patients
The public inquiry heard common themes of call bells going unanswered, patients left lying in their own urine or excrement, or with food and drink out of reach. Patient falls were also concealed from relatives. An inward looking organisation, with a low staff turnover, the trust suffered from a lack of new ideas and a negative culture that became entrenched. Extremely poor nursing care was at the heart of this enquiry bringing into question ‘empathy’ in health care professionals.
A qualitative study of empathy in 3rd year medical students showed that inhibitors of empathy may originate in the hidden curriculum creating a greater distance between patients and physicians. Cynicism as a coping strategy, primary importance of technical knowledge, emotional control, becoming and being a professional hence keeping a professional distance from patients reinforced lack of empathy. One student explained that exploring a patient’s true feelings is not permitted. She noted that she explored and discussed patients’ emotions less than before because she felt that it is not accepted within the medical educational environment.(Source: http://bmcmededuc.biomedcentral.com/articles/10.1186/1472-6920-14-165)
Good bedside manner is nothing but a practical demonstration of empathy. Can it be taught and learnt?
While at one level it is possible to ‘understand’ how another person might be feeling (cognitive empathy), not everyone is capable of feeling how the other person might be feeling (emotional empathy). Both are essential for people in caring roles.
In all my years as a practicing doctor, I have learnt that patients are not just a source of inspiration for me but a primary source of learning. Books can only teach you so much. Most valuable lessons come from patients and from observing the attitudes and behaviour of senior colleagues.
For a long time I didn’t understand why Saagar couldn’t speak to me about his suicidal thoughts. I felt terrible about myself – untrustworthy. In short, Bad Mum. I thought we were close. When he took his own life, I felt betrayed and shunned like an outsider. He must have known that I cared for him deeply even if I didn’t always know how to show it. I am sure he felt the vastness of our love as much as I did. It glued us together and carried us as one through thick and thin. It was the most solid part of my life, unwavering, undying and unfaltering.
What stopped him? Why couldn’t he? In the early months it nearly killed me, the utter and complete sense of failure as a parent. How alone must he have felt! Was he embarrassed? Ashamed? Confused? Did he feel trapped? Why couldn’t I see it? Was it out of concern for me that he didn’t share? Did he know that I would probably freak out if he did? Could he feel my pain as I watched him suffer? Could he see how lost and powerless I felt? Was his silence his way of being kind to me? Did he really believe that I would be better off without him? Did he even know the meaning of what he was doing?
All these unanswerable haunting questions coming back uninvited! But now, I can understand.
ps: If you are concerned about anyone close to you, please call PAPYRUS for help and advice. I wish I knew of them when Saagar was ill. (https://www.papyrus-uk.org/)