Is the information sharing approach within the mental health services leading to the deterioration in health and/ or death of patients?

During my Court of Protection and public law experience, I've seen several cases where a patient has been acutely mentally unwell, they're cared for primarily by their family within the family home and the patient has a history of withholding consent to share their medical information with family. 

As a result, mental health services, who are often underfunded and understaffed, refuse to provide the primary carer with crucial information such as what medications the patient should be taking, when their multi-disciplinary meetings are, or what the ongoing care and support plan is. 

In these cases, the patient can disengage from services or be non-compliant with medication taking and rapidly deteriorate in the community, which greatly increases the chances of a hospital admission. This period of deterioration can present family members with chronic stress levels and health or safety risks for the patient. 

Mental health services often take the position that families can provide information but not receive it. This prevents the vulnerable adult from having someone close to them and involved in their care to advocate on their behalf. It also prevents families from being able to have any meaningful input in the care and to keep the patient stable in the community. 

I've seen circumstances where a new consultant psychiatrist is considering putting a patient on  medication that has previously not worked for a patient but is refusing to discuss this with the patient’s family (based on the patient’s previous withholding of consent), so they are unable to provide the consultant with this highly relevant medical history. I've also seen them not invite families to key meetings and discharge patients where the patient then doesn't attend appointments.

However, if consultant psychiatrists and mental health service providers had a greater understanding of the Mental Capacity Act 2005, then they could properly recognise where a patient lacks the capacity (decision making ability) to decide to withhold information from their family. I've seen consultants incorrectly assess patients as having capacity in this area just because the patient is highly intelligent or articulate and able to communicate their views properly. They frequently miss whether the patient has the executive functioning to apply information to their own situation or whether they can properly use or weigh the risks or benefits in this area.

If a patient is assessed as lacking capacity in this area, those involved in their care could agree that it's in the patient’s best interests for family to have this information. This would enable family to support the patient to remain stable in the community and would ultimately reduce the pressures on the services. This should also reduce the number of hospital admissions, periods of deterioration and resultant deaths for mental health patients. 

With the relevant information, there are several ways family members could support mental health patients in the community. For example, they could support the patient to collect their medications, which could stop them from becoming medically unstable. They could support the patient to attend relevant appointments. They could work collaboratively with clinicians to establish an agreed timeline of the patient’s illness to identify crucial points like repeat triggers and which medications the patient has objectively responded well to. They could clarify any factual inaccuracies in the patient’s history and inform clinicians where the patient is minimising their own symptoms (which can be a subtle mental health symptom). They could work with the authorities to highlight any nuanced changes in the patient’s presentation, which is often key to early mental health treatment.

Services can apply a very high threshold to detain a mental health patient in hospital under the Mental Health Act 1983. There is a separate question of whether their interpretation of this statutory provision is primarily funding driven but it means that services will frequently require that mental health patients reach a life-threatening stage before they enforce the hospital care required. 

Whilst the patient is deteriorating to this critical point, families witness their loved one self-harm, highly distressed or suicidal and often struggle to keep them safe. This can put families at physical risk and expose them to such high levels of stress that they develop serious mental health issues themselves. Therefore, to obstruct a patient’s community care by not recognising when the patient lacks the capacity to share their medical information to primary carers, can be irreversibly damaging to both the patient and family.

It should of course be recognised that if a patient is assessed as lacking capacity in this area and there are genuine safeguarding concerns about the family having this information (e.g. where there are clear coercive or abusive behaviours), then it is likely to be deemed in the patient’s best interests for family not to have this information. In such circumstances, the safeguarding risks and primary carers’ inability to provide appropriate care in the absence of such key information may well lead to a conclusion that it isn't in the patient’s best interests to remain living with the family.

Legal guidance 

For one of my cases in which these issues arose, I created some legal guidance for this area of capacity with the barrister involved. We received permission from the judge to publish this guidance, which is as follows: 

The relevant information for this area that [P] should be able to take into account would be: 

i) What sort of information might be shared by professionals. 

ii) The benefits of sharing this sort of information with her family including support with appointments, monitoring of care provision, support to engage with services and medication and so on. 

iii) The risks of not sharing this information with her family, including the risk of deterioration, the reported risk of death due to substance abuse, the risk of non-engagement with services. [P] would need to be able to recall and weigh up past events where her family have, and have not been provided with information, and the impact of those decisions on [P]. 

We also had permission to publish the findings of the expert independent Consultant Psychiatrist in this case on P’s capacity to consent to permit professionals to share information about her health and care provision with her family. These findings highlighted that the patient may decide not to share information for reasons that are symptomatic of their mental health illness rather than for privacy reasons:

“15.4 Decide whether to permit professionals to share information with her family. 

15.4.1 It is noted that [P] has frequently disengaged from her mother, and this has been a particular feature of her presentation when she has been acutely unwell or misusing substances. 

15.4.2 However, her engagement with her mother when she becomes particularly distressed by events in her life begins to increase. This was evidenced when she made contact with her mother just before the birth of her child and sought support from her mother around this time. It has also been evident that various other times when she has been in particular difficulty, such as not having access to adequate food provisions. 

15.4.3 From the information available, it does not appear that [P] has an understanding of her mother’s role as the nearest relative under the MHA. In the absence of sharing information with her mother, her ability to act in this role is particularly challenging. I am not aware from the records available that her mother has been displaced from this role. 

15.4.4 It is common for individuals who experience a significant mental illness that is complicated by substance misuse to disengage from family members due to a variety of reasons that often involve feelings of shame, guilt and disempowerment. 

15.4.5 Due to [P]’s cognitive rigidity, which is a consequence of her mental illness, it is my view she is unable to understand the necessary information relevant to the sharing of information with her family, particularly her mother, as she remains fixed on her own narrative and cannot process other information in regard to this sensitive matter. 

15.4.6 Furthermore, it is my view that she is unable to weigh up the necessary information in regard to this decision. Her overall sense of guarding, paranoia and motivation to distance herself from anything that is likely to remind her of her premorbid self is likely to significantly impact on her ability to consider the information required to share information with her family. 

15.4.7 It is however likely that [P] is able to retain the necessary information given that her relationship with her mother has been longstanding. Furthermore, she is able to communicate her decision. 

15.4.8 However, it is my view that due to the nature of her mental illness, her ability to understand and weigh up the necessary information in regard to this matter is impaired. Thus, on the balance of probability she lacks capacity to make this decision.”

Summary 

It's crucial that the mental health and community care service providers are well versed in this area of capacity and its implications for vulnerable adults and their families. 

Often services assume that they are safeguarding a patient’s right to privacy but neglect to ask the patient the important question of which specific information they do or do not want to share with their family, and why. 

Therefore, health and care professionals should carefully consider these issues, discuss them with the patient, being clear about the types of information which it might be appropriate to share, ensure that they properly assess the patient’s capacity to make decisions about sharing specific types of information and strongly consider the long-term implications on the patient of not sharing such information.

Find out more about Irwin Mitchell's expertise in supporting families access appropriate mental health care at our dedicated protecting your rights section.