Understanding the Role of Carers in Mental Health

As you might know, unpaid carers play a vital yet often overlooked role in supporting individuals with mental health needs. Their contributions provide essential support and advocacy, yet they frequently encounter significant challenges due to limited training, insufficient resources, and time constraints. This blog and video explores key strategies for holding mental health trusts accountable while empowering carers to influence and improve mental health services. The blog is aimed at carers who are involved at their local mental health NHS trust. This means that they help shape services.

The Importance of Holding Mental Health Trusts Accountable

Ensuring accountability within mental health trusts is crucial. Carers have the right to expect high-quality, effective care for their loved ones. By holding such NHS trusts to these standards, both patients and carers benefit. Accountability encompasses various aspects, including access to timely and appropriate care, the quality of treatment plans, and the consistency of care. Without these measures in place, there is a risk of declining service quality, ultimately affecting the well-being of both carers and patients. Holding Mental Health NHS trusts to account is never an easy thing, you will have to learn from carer peers and to be honest, all you have is your carer lived experience to feedback your view of services.

If you want to watch the in-depth video of this lecture, please see below.

The Role of Carers in Mental Health

Carers offer valuable insights into the needs of those they support. Their experiences are instrumental in shaping effective mental health services.

However, they often face barriers, including exclusion from decision-making processes and a lack of identification and recognition for their contributions. It is important that carers try to get involved in developing services, so that carers are actively involved in care and are also respected.

Carers can be involved in a number of ways at mental health NHS trusts, although not mentioned in the lecture, here is a brief list below.

• Many NHS Mental Health Trusts have carer forums or service user and carer advisory groups where carers can share their experiences, concerns, and suggestions.
• carers can also sit on NHS governance boards, steering committees, or working groups to represent the views of unpaid carers in decision-making.
• NHS trusts often have PPI (Patient and Public Involvement) programs, which aim to involve the community, including unpaid carers, in shaping service.
• Some trusts implement co-production models – a good example is NSUN 4 PPI model.
• Many trusts appoint carer representatives to voice the concerns and needs of unpaid carers. E.g. I am a carer ambassador.

If you are involved in such a way, expect things to query the list below, these are the most common things you will want to query your NHS trust about.

Access to Timely and Appropriate Care

If you are involved in any way from the list I have mentioned, One of the things you want to question about mental health services is timely access to mental health services. These are a fundamental aspect of quality care. Delays in assessments, treatments, or referrals can lead to crises and additional stress for both patients and carers. Several factors should be considered:

Waiting Times

Carers and mental health patients should have access to information about waiting times for various mental health services. Understanding how waiting times are measured and the steps taken to reduce them can be particularly important in emergency situations where immediate intervention is necessary. As involved carer representatives, this is something you should try to query.

Availability of Crisis Care

It is essential for mental health trusts to offer effective crisis care pathways, including emergency mental health teams and 24/7 crisis hotlines. Carers should be informed about the availability and responsiveness of these services.

If involved in shaping services expect to ask questions simialr to below.

1. What crisis services are available 24/7, and how can patients and carers access them in an emergency?
2. How quickly do crisis teams respond to urgent cases, and what is the average wait time for assistance?
3. Are carers provided with clear guidance on what to do and who to contact in a mental health crisis?
4. How does the trust coordinate crisis care with other emergency services (e.g., ambulance, police, A&E) to ensure a smooth and safe response?

Early Intervention

Early intervention plays a critical role in preventing mental health conditions from worsening. Carers should be aware of how mental health trusts assess and implement early intervention strategies to reduce the need for hospitalization or crisis management. Again!! Remember your role on involvement is to query about early intervention. Here is an examples.

1. How are individualized care plans developed and reviewed to ensure they meet the specific needs of each patient?
2. What measures are in place to ensure consistency in care, such as continuity with the same mental health professionals?

Ensuring Quality of Care

High-quality care includes individualized treatment plans that cater to patients’ specific needs while also supporting their carers. Several key areas should be assessed:

Effective Treatment and Care Plans

Mental health trusts should ensure that patients receive well-structured, evidence-based treatment plans tailored to their needs. Regular reviews and adjustments should be conducted to maintain the effectiveness of these plans.

Again, here are some examples on hold your local mental health trust to account on involvement.

1. How often are treatment plans reviewed, and what process is in place to make necessary adjustments based on patient progress or changing needs?
2. How are carers involved in discussions about treatment plans, and how is their input considered in decision-making?

Consistency of Care

Continuity in care is essential for progress. Patients benefit from seeing the same professionals whenever possible, reducing disruptions in treatment. Carers should inquire about staffing stability and the trust’s approach to maintaining consistent care.

Holistic Care

Mental health services should adopt a holistic approach, addressing not only mental health but also physical health, emotional well-being, and social circumstances. Carers should advocate for coordinated care that integrates physical health services, social support, and housing assistance where needed.

Here is a good question regarding holistic care

1.What steps are taken to ensure that treatment plans address both mental and physical health needs, promoting a holistic approach to care?

Carer Involvement in Care Decisions

Carers should be actively engaged in discussions and decisions regarding the treatment and care of their loved ones. Their inclusion ensures a more comprehensive approach to mental health support.

Inclusion in Decision-Making

Mental health trusts should ensure that carers are appropriately involved in decision-making processes while respecting patient confidentiality. If such involvement is lacking, carers have the right to seek clarification and advocate for change.

Carers’ Assessments

Under the Care Act 2014, carers are entitled to an assessment of their own needs. Mental health trusts should conduct these assessments transparently and effectively, ensuring that carers receive the support they require.

To hold your NHS mental health trust to account, consider the following questions.

1. How does the trust ensure that all eligible carers are made aware of their right to a carer’s assessment under the Care Act 2014?
2. What is the process for requesting and completing a carer’s assessment, and how long does it typically take?
3. How does the trust ensure that carer’s assessments are regularly reviewed and updated as circumstances change?

These questions are a good start, but remember NHS MH trusts might not be assigned to do carer assessments, there are however plenty of other questions you might want to think about.

Communication and Information Sharing

Clear, accessible communication between mental health trusts and carers is essential for effective care delivery.

Communication and Engagement

Carers should be provided with regular updates about their loved one’s treatment and available support services. Mental health trusts should establish transparent communication policies and be held accountable for their implementation.

Support for Carers

Carers require adequate support to manage the challenges of their role effectively. Mental health trusts should offer services that cater to carers’ well-being.

Here are some good questions to think about on this section.

1. What specific support services does the trust offer for carers, such as respite care, counseling, peer support groups, or financial assistance?
2. What training and education programs are available to help carers understand mental health conditions, treatments, crisis management, and navigating mental health services?
3. What measures are in place to ensure that support services for carers are accessible, flexible, and tailored to diverse needs, including working carers and those from underrepresented communities?

Carer Support Services

Access to counseling, respite care, and support groups is crucial for carers. These services help carers maintain their own mental health and resilience while fulfilling their caregiving responsibilities.

Training and Education

Training programs should be available to carers to help them understand mental health conditions, treatment options, crisis management, and navigating mental health services. Well-informed carers can provide better support and advocate more effectively.

Emotional Support

Carers frequently experience stress and isolation. Mental health trusts should offer emotional support services, including peer support groups and counseling, to assist carers in managing their mental well-being.

Respect for Patient and Carer Rights

Mental health trusts must uphold the rights of both patients and carers by ensuring dignity, confidentiality, and respect for their expertise.

Recognition and Respect

Carers possess invaluable knowledge about the needs of their loved ones. Their insights should be actively included in care planning and decision-making.

Here are some examples to hold your local mental health NHS turst below.

1. How does the trust ensure that carers are actively involved in care planning and decision-making, while also respecting patient confidentiality?
2. What formal policies or frameworks does the trust have in place to acknowledge the role of carers and their contributions to mental health care?
3. What steps does the trust take to ensure carers receive regular updates about their loved one’s care and treatment when appropriate?

Legal Rights

Carers should be informed of their rights under relevant legislation, including the Mental Health Act and the Care Act 2014. Mental health trusts should provide resources and training on these legal protections.

Without a doubt, holding your NHS mental health trust on these areas is very tough. I mean how many carers are versed in mental health law? Anyway below are some great questions to start off with.

1. How does the trust ensure that carers are informed about their rights under the Care Act 2014 and the Mental Health Act, including their entitlement to a carer’s assessment?
2. What training and resources does the trust provide to carers to help them understand their rights and how to advocate for their loved ones effectively?
3. How does the trust ensure that mental health professionals are trained on carer rights and responsibilities under relevant legislation? (you might want to watch my video lecture on this one) – posted at the start of this blog
4. What steps does the trust take to support carers in accessing legal advice or independent advocacy if they face challenges in securing their rights? (tricky one, especially if there is a culture of pushing back)

Addressing Inequalities and Diversity

Efforts should be made to eliminate disparities in mental health care outcomes and provide culturally sensitive services.

Cultural Competence

Mental health trusts should deliver services that acknowledge and respect diverse cultural backgrounds, including ethnicity, religion, language, and gender identity. Carers should advocate for improvements in this area when necessary.

Here are some good questions that can help hold to account.

1. How does the trust ensure that mental health services are culturally sensitive and inclusive of diverse backgrounds, including ethnicity, religion, language, and gender identity?
2. What training do mental health professionals receive on cultural competence, and how often is this training updated? (Remember PCREF!!)
3. What steps does the trust take to address disparities in mental health outcomes for minority ethnic groups and other underrepresented communities?

Dont expect to be an expert on these questions, carers need training on these as well. Training should be co-produced as well.

Disparities in Care

Carers should ensure that trusts actively address any disparities in care, particularly for minority ethnic groups, LGBTQ+ individuals, and other marginalized communities.

Accountability and Transparency

Transparency is a fundamental component of accountability within mental health services.

Complaints and Feedback

Mental health trusts should have accessible and responsive complaint and feedback mechanisms. Regular audits and reporting should be conducted to assess performance in these areas.

Feedback is by far one of the most important ways an NHS mental health trust can improve services, to hold them to account on this, consider the following.

1. What formal processes are in place for carers and service users to submit complaints or feedback about mental health services, and how accessible are these channels?
2. What is the trust’s standard response time for addressing complaints, and how are carers informed of the progress and outcome of their concerns?
3. How does the trust use complaints and feedback to improve services, and what evidence is available to show changes made in response to concerns raised?

These questions are a good start, there are many more questions….can you think of any more?

Learning from Incidents

Lessons should be learned from serious incidents to prevent future occurrences. Carers should inquire about the trust’s processes for investigating incidents and implementing necessary changes.

Regular Audits

Routine audits should be performed to assess service quality, staffing levels, and patient outcomes. The findings should be publicly available to ensure transparency.

Adequate Staffing and Training

Staffing levels and professional training are crucial for maintaining high-quality mental health care. Consider the following questions on holding to account.

1. How does the trust ensure that staff receive ongoing training in evidence-based mental health care, crisis management, and carer involvement?
2. What steps does the trust take to improve staff retention and prevent burnout among mental health professionals?
3. How often does the trust review staffing levels and training programs, and what actions are taken if gaps in service provision are identified?

Staffing Levels

Carers should ensure that their mental health trust maintains adequate staffing levels to prevent overwhelmed and understaffed services.

Ongoing Training

Mental health professionals should receive continuous training on best practices, cultural competence, and carer inclusion. Carers should inquire about the frequency and content of staff training programs.

Advocacy and Legal Support

Independent advocacy services can assist carers in navigating the mental health system and understanding their rights.

Access to Advocacy Services

Carers should be aware of and utilize advocacy services when facing challenges with mental health trusts.

Involved in your local mental health NHS trust as a carer? Consider these questions.

1. What independent advocacy services are available for carers, and how does the trust ensure carers are aware of them?
2. How does the trust work with advocacy organizations to ensure carers’ rights and concerns are represented in decision-making?
3. What support is available for carers who feel their concerns are not being acknowledged by mental health professionals?

Legal Support

Legal assistance should be available when mental health trusts fail to fulfill their duties. Carers should be informed about their legal options in such circumstances.

Conclusion

Holding mental health trusts accountable is essential for ensuring high-quality care. While this process may be complex, it can lead to significant improvements in mental health services. By focusing on access to care, treatment quality, carer involvement, support services, respect for rights, and advocacy, carers can contribute to meaningful change and better outcomes for their loved ones.

Note: Not all NHS trusts play ball and due to culture might not want to be accountable, there are ways they can push back on patient and carers, but that is another lecture for another day.