Tag Archives: carers

Understanding the Roles in a Community Mental Health Team

Another blog post from Matthew McKenzie carer activist and author of “Experiencing mental health caregiving”. Here in this blog, I discuss about how caring for someone with mental illness can be overwhelming to navigate through the various services and professionals involved.

Knowing who to contact and when can make a significant difference in the effectiveness of the care provided. In this article, we delve into the key staff members that are typically involved in a community mental health team and the roles they play.

If you want to watch the long view video (27 minutes). Please click the video blow

The Core Team Members

Psychiatrists

Psychiatrists are often the cornerstone of a mental health team. These medical doctors specialize in diagnosing and treating mental health disorders. They are responsible for prescribing medication and developing care plans. As a carer, it is crucial to have a good relationship with the psychiatrist, as they play a pivotal role in the overall treatment plan of your loved one.

Psychologists

Psychologists focus on assessing and treating mental health issues through psychological therapies rather than medication. They provide various types of therapies and conduct tests to understand the patient’s mental state, helping them cope through recovery processes. While they do not prescribe medication, their role is vital in assisting with the psychological aspects of mental health.

Mental Health Nurses

These registered nurses have specialized training in mental health. They offer care and support, help manage medication, and often work directly with both patients and their families. Their presence isn’t limited to inpatient settings; they are also found in community settings, providing consistent and essential support.

Clinical Social Workers

Social workers in mental health settings provide therapy and support to both the individual and their family. They assist in accessing community resources, which are crucial once the patient moves out of institutional settings. They act as a bridge between the community and the mental health system, helping navigate through various social services.

Counsellors and Therapists

These professionals offer individual or group therapy, focusing on the emotional and psychological challenges faced by the patient. Their role is similar to that of psychologists but often focuses more on the practical aspect of dealing with daily mental health challenges.

Specialized Support

Occupational Therapists

Though less common, occupational therapists play a significant role by helping individuals develop, recover, and maintain daily living and work skills. They use therapeutic activities to achieve these goals, which are crucial for the patient’s integration into everyday life.

Psychiatric Technicians

These staff members assist with the day-to-day care of patients, especially in psychiatric facilities, and monitor behavior. Their role is mostly found in settings where the patient’s mental health condition requires intensive intervention.

Addiction Specialists

Addiction specialists are crucial for patients dealing with substance use disorders. They provide therapy and support, focusing specifically on recovery from addiction, which can be closely intertwined with other mental health conditions.

Rehabilitation Specialists

These professionals help patients with mental illnesses develop skills for independent living and integrate into the community. Their work is essential for long-term recovery and improving the quality of life for individuals with mental health issues.

Coordination and Crisis Management

Case Managers

Case managers, although rare, play a vital role when present. They help patients and their families navigate the mental health services, ensuring that necessary resources and supports are accessed. Their role often overlaps with that of clinical social workers or care coordinators.

Crisis Intervention Specialists

These trained professionals respond to mental health crises, providing immediate support and stabilization for individuals in distress. Their role is critical in emergencies, ensuring that the person gets the help they need promptly.

Family and Community Support

Family Therapists

Family therapists specialize in working with families to improve communication, resolve conflicts, and support individuals with mental ill health. Their role is crucial in ensuring that the family as a whole can cope with and support the patient effectively.

Peer Support Specialists

Peer support specialists use their lived experiences with mental health issues to provide support and guidance to others facing similar challenges. They offer hope and a unique form of empathy and understanding, making them a crucial part of the mental health team. Take note, not all peer support specialists are the same. Carer peer support specialists are a new trend, but will be a rare resource compared to mental health peer support.

Community Outreach Workers

These workers connect individuals and families with community resources and support services. They focus on prevention and education, ensuring that the patient and their carers know about and can access necessary supports.

Additional Roles

Administrative Staff

These are the personnel who handle scheduling, intake, and other administrative tasks. They ensure smooth operations and access to services, often being the first point of contact for carers seeking assistance.

Dieticians and Nutritionists

Mental health can significantly impact physical health, including nutrition. Dieticians and nutritionists specialize in addressing the nutritional needs of individuals with mental health issues, emphasizing the connection between diet and mental well-being.

Art and Music Therapists

Creative therapists use art and music as therapeutic tools to help individuals express emotions and process experiences. These therapies offer alternative ways to cope with mental health challenges, often as part of a broader treatment plan.

Community Outreach Workers

Staff who connect individuals and families with community resources and support services, often focusing on prevention and education.

Pharmacists

Pharmacists play an essential role in medication management, reviewing prescriptions, and advising on proper medication use. They collaborate closely with psychiatrists to ensure that the medication plan is effective and manageable for the patient.

Enhancing Collaborations

Understanding the roles within the community mental health team allows carers to better advocate for their loved ones. It leads to more effective communication and faster resolution of concerns. Building relationships with these team members facilitates a coordinated approach to care and treatment.

Accessing Resources

Identifying the right professionals can help carers access valuable resources and educational materials tailored to their situation. This is particularly important for long-term support and recovery.

The Importance of a Carer Support Officer

Among all the roles, care support officers are perhaps the most crucial for carers. They can act as the main link between the mental health staff and the carers, providing education, training, and support. They listen to carers, relay concerns, and remind them of their own well-being, sometimes even conducting carer assessments.

Conclusion

As a carer, familiarizing yourself with the mental health team can significantly enhance the support you provide to your loved one. Understanding who to contact for specific needs helps in effective navigation of the mental health system. The more you know about the team’s structure and roles, the better you can advocate for and support your loved one’s journey towards recovery.

Navigating the mental health system can be complex, but with the right knowledge and support, carers can make a significant difference in their loved one’s treatment and recovery process.

Defending your Carer’s Rights: Strategies when Mental Health Professionals push back

Welcome to a carers rights blog post from carer activist Matthew McKenzie author of several books including “A Caring Mind”. Matthew is also a Volunteer at Carers UK and a network partner and volunteer at Carers Trust.

Here is another informative post by Matthew to help carers navigate the mental health system. If you are caring for someone with mental ill health, you can use some steps from my blog post.

You can also watch the more detailed video below.

In this post you can learn how unpaid carers can defend their rights against mental health professionals who push back, dismiss concerns, and lack transparency. Empower yourself with actionable steps and advocacy resources.

Defending Carer’s Rights in Mental Health

Caring for a loved one with mental health issues can be a challenging and emotionally draining journey. Matthew McKenzie shares insights and actionable advice on how carers can defend their rights when dealing with mental health professionals. This article delves into the key points from his lecture on the intricacies of navigating the mental health care system and offers practical steps to ensure carers’ concerns are heard and addressed.

Understanding the Challenges Carers Face

Before we look into the rights of unpaid carers, we need to know in what ways mental health professionals can push back. Some reasons why mental health professionals can tackle carer views can be valid at times, but there are situations where they are clearly excluding the family or carer.

Carers often face significant obstacles when interacting with mental health professionals. These challenges can range from being dismissed or ignored to encountering a lack of transparency and poor communication. Here are some common issues carers might experience:

Dismissal of Concerns: Carers’ observations are often brushed aside as bias or over-involvement.
Assumption of Professional Superiority: Professionals might dismiss carer’s input, thinking they know best due to their training and expertise.
Lack of Transparency: Poor communication and hiding crucial information from carers can hinder care planning.
Prioritizing Confidentiality Over Inclusion: Strict adherence to patient confidentiality can exclude carers from care planning and updates.
Not Valuing Carer’s Input: Professionals might disregard carers’ insights on day-to-day issues and practical support needs.
Ignoring Carer’s Well-being: Carers’ emotional and physical well-being can often be overlooked.
Disregarding Safety Concerns: Safety concerns raised by carers can sometimes be downplayed or ignored.
Failure to Adapt Treatment: Not incorporating feedback from carers to adjust treatment approaches can be detrimental.

Documenting Interactions and Concerns

One of the most effective ways carers can defend their rights is by documenting all interactions and concerns.

Keeping a Record

Maintaining a journal that records interactions with mental health professionals is crucial. This journal should include:

Dates and Times: Log the exact dates and times of meetings and interactions.
Names of Staff: Record the names of all staff members involved.
Details of Conversations: Summarize the key points and outcomes of each interaction.
Specific Concerns: Document specific concerns or incidents that illustrate the issues at hand.

This record can serve as a valuable reference if a formal complaint needs to be made in the future.

Requesting Formal Meetings

When issues arise, it is within a carer’s rights to request a formal meeting with the mental health team. This meeting should ideally include the care coordinator, social worker, or psychiatrist.

Structuring the Meeting

Prepare Ahead: List your concerns beforehand.
Bring Support: If you feel intimidated, bring a trusted friend, family member, or advocate.
Set Outcomes: Establish clear outcomes for the meeting to ensure your concerns are addressed.

Seeking Help from Advocates

If you find the mental health team is still unresponsive, seeking help from patient advocates can be a game-changer.

Role of Advocates

Express Concerns: Advocates help in clearly communicating your concerns.
Attend Meetings: They can attend meetings with you to ensure your voice is heard.
Local and National Support: Look for local mental health charities like Mind, Rethink Mental Illness, and others that offer advocacy services.

Filing a Formal Complaint

When documenting interactions and meeting requests do not yield results, it might be time to escalate the issue by filing a formal complaint.

Process for Filing a Complaint

Submit through Trust Website: Each mental health trust has a complaints department, usually accessible via email.
Keep a Paper Trail: Ensure all correspondences are kept, and consider requesting read receipts for emails.

Connecting with Carer Support Groups

Engaging with carer support groups can provide resources, guidance, and emotional support.

Benefits of Support Groups

Shared Experiences: Learn strategies from other carers who have faced similar challenges.
Resource Sharing: Support groups can provide valuable insights and tools for navigating difficult situations.

Providing Feedback to Regulatory Bodies

If persistent issues arise, providing feedback to organizations like the Care Quality Commission (CQC) or Healthwatch can prompt action.

Role of Regulatory Bodies

Investigate Feedback: These bodies investigate and record feedback on health and social care services.
Prompting Action: Consistent feedback from multiple carers can flag systemic issues.

Educating Yourself on Carer’s Rights

Knowledge of carer’s rights is crucial in advocating effectively.

Key Areas to Understand

Mental Health Act: Familiarize yourself with the provisions of the Mental Health Act.
Carer’s Charter: Check if your mental health trust has a Carer’s Charter outlining expectations and rights.
Carer’s Assessments: Request a carer’s assessment from the local authority to secure additional support.

Staying Calm and being Persistent

Maintaining a calm demeanor while being persistent is vital.

Approach to Communication

Respectful Tone: Present concerns calmly to encourage professionals to listen.
Persistence: Continuously advocate for your loved one’s needs. Keep highlighting urgent issues until they are resolved.

Conclusion

Defending carer’s rights requires knowledge, documentation, and persistence. By understanding common challenges, keeping thorough records, seeking help from advocates, and knowing your rights, you can ensure your voice is heard. Remember, staying calm and persistent will aid in navigating the complexities of the mental health care system.

Always be informed and proactive in defending your rights and the rights of your loved one. Join support groups, educate yourself on relevant laws, and do not hesitate to escalate issues when necessary. Your efforts are crucial in securing the best possible care for those you support.

Lung Cancer Awareness Month 2024: Risks, Symptoms, and Support for cancer caregivers

Welcome to another blog post by Matthew McKenzie, author of of “The Experience of Cancer Caregiving” and facilitator of the National Cancer carer forum.

As of November 2024, it is Lung Cancer Awareness Month. I have done a short video to help raise awareness. From the video you can learn about the key risk factors, symptoms, and ways to support those affected by lung cancer. Unite for lung cancer awareness month and make a difference in spreading awareness and care.

Raising Awareness for Lung Cancer: Stronger Together, United for Lung Cancer Awareness

Lung cancer remains one of the most significant health challenges we face today. As we join forces during Lung Cancer Awareness Month 2024, it’s essential to spread knowledge and support those affected by this formidable disease. The theme for this year, “Stronger Together: United for Lung Cancer Awareness month,” underscores the importance of unity in combating lung cancer. Let’s delve into the crucial aspects of lung cancer, from understanding its risk factors and symptoms to prevention strategies and support for caregivers.

Understanding Lung Cancer Risk Factors

Lung cancer can affect anyone, but several key risk factors can increase an individual’s susceptibility to this disease. Recognizing these factors is a fundamental step in raising awareness and encouraging preventative measures.

1.Smoking

Topping the list of risk factors, smoking is the leading cause of lung cancer. The harmful chemicals present in tobacco smoke damage the lung cells, leading to cancerous changes. If you are a smoker, quitting is the most significant step you can take to reduce your risk of developing lung cancer.

2.Family History

Genetics also play a role in lung cancer risk. If lung cancer runs in your family, you should be more vigilant and possibly undergo regular screening. Knowing your family medical history can help you take proactive steps toward early detection and prevention.

3.Secondhand Smoke

Even if you don’t smoke, being around those who do can still put you at risk. Secondhand smoke is also dangerous and can lead to lung cancer. Avoiding environments where you might be exposed to smoking and advocating for smoke-free spaces are crucial.

4.Occupational Exposure

Certain jobs may expose individuals to harmful substances like asbestos and specific chemicals, which are known lung cancer risk factors. Protecting workers through safety regulations and the use of protective gear can help minimize this risk.

5.Environmental Exposure

Air pollution is another significant risk factor for lung cancer. Living in areas with high levels of pollution can increase your susceptibility to the disease. Advocating for cleaner air policies and taking precautions to reduce exposure to polluted air can be beneficial.

Recognizing Lung Cancer Symptoms – Get tested!

Lung cancer often does not show signs in the early stages, making it challenging to detect. However, being aware of the symptoms can lead to earlier diagnosis and better treatment outcomes.

1.Persistent Cough

A cough lasting three weeks or more is a common symptom of lung cancer. Any persistent or worsening cough should prompt a visit to the doctor.

2.Changes in a Chronic Cough

If you have a long-standing cough due to smoking or other reasons, note any changes. New characteristics, such as increased frequency or severity, can be concerning.

3.Recurrent Chest Infections

Frequent chest infections that don’t clear up with usual treatment could be a sign of lung cancer and should not be ignored.

4.Unexplained Breathlessness

Shortness of breath or wheezing without an apparent cause is another symptom to watch for. It may indicate that the cancer is affecting lung function.

5.Coughing Up Blood

The presence of blood in coughed-up mucus is alarming and warrants immediate medical attention.

6.Unexplained Weight Loss

Losing weight without trying can be a sign of various cancers, including lung cancer. It’s essential to monitor your weight and report any unexplained losses to your doctor.

7.Persistent Tiredness

Chronic fatigue that doesn’t seem to have an obvious cause might be associated with lung cancer, among other conditions.

8.Chest or Shoulder Pain

Ongoing chest or shoulder pain that doesn’t improve can also be a warning sign, especially if it is accompanied by other symptoms.

9.Hoarse Voice

A hoarse voice lasting more than three weeks should be checked by a healthcare provider.

Prevention and Maintenance of Lung Health

Preventing lung cancer is far better than treating it. Here are several steps to keep your lungs healthy and minimize the risk of lung cancer.

1.Don’t Smoke or Quit

The most effective prevention strategy is to never start smoking. If you do smoke, quitting as soon as possible can significantly reduce your risk.

2.Avoid Indoor Pollutants

Steer clear of secondhand smoke, certain chemicals, and materials like radon that can pollute indoor air and harm your lungs.

3.Minimize Exposure to Outdoor Pollution

Taking steps to reduce your exposure to outdoor air pollution, such as staying indoors on high pollution days, can help protect your lungs.

4.Prevent Respiratory Infections

Maintaining good hygiene to avoid infections, like washing hands regularly and staying up to date with vaccines, is crucial for lung health.

5.Regular Medical Checkups

Routine health screenings can catch problems early, including lung cancer. Discuss with your doctor how often you should get checked, especially if you have risk factors.

6.Exercise Regularly

Physical activity helps maintain lung health and overall well-being. Engaging in regular exercise keeps your respiratory system strong.

7.Maintain a Nutritious Diet

A healthy diet supports your body’s immune system and can aid in the prevention of various diseases, including lung cancer.

Supporting Someone with Lung Cancer

Caring for someone with lung cancer can be incredibly challenging but also rewarding. With the right support, you can make a significant difference in their journey.

1.Educate Yourself

Understanding lung cancer and the available treatment options enables you to provide better support. Staying informed about the disease helps you navigate the complexities of care.

2.Manage Symptoms and Side Effects

Helping manage symptoms and side effects ensures that your loved one’s quality of life remains as high as possible. This might involve medication management, dietary adjustments, and more.

3.Provide Emotional Support

Emotional and psychological support is crucial. Being there to listen and offer a comforting presence can drastically impact their mental and emotional well-being.

4.Assist with Medical Management

Accompanying your loved one to medical appointments, keeping track of treatment schedules, and communicating effectively with healthcare providers are all vital roles you can play.

5.Create a Comfortable Home Environment

Ensuring that the home is a comforting and supportive space can help improve their quality of life. This includes facilitating easy access to necessities and creating a restful environment.

6.Offer Social and Practical Support

Helping with day-to-day tasks, such as cooking, cleaning, and transportation, can relieve the burden on someone struggling with lung cancer.

7.Take Care of Yourself

It’s important to also take care of your well-being when you’re a caregiver. Seek support when needed and ensure you have time to rest and recharge.

8.Stay Informed About New Treatments

New treatments and resources for lung cancer continue to emerge. Keeping up to date on these developments allows you to provide the best possible care and advocacy for your loved one.

Prepare for End-of-Life Care

If the situation calls for it, preparing for end-of-life care with compassion and dignity is essential. This ensures that your loved one’s final days are as comfortable and meaningful as possible.

Conclusion

Lung Cancer Awareness Month reminds us of the importance of uniting to fight against lung cancer. Whether through prevention, recognizing symptoms early, supporting those battling the disease, or joining in advocacy efforts, every action counts. Remember, we are indeed stronger together. Let’s continue to spread awareness and support each other in the fight against lung cancer. Stay strong, stay informed, and take good care of yourselves and each other.

When there is lack of carer awareness – Examples of carers being shut out of mental health care

Welcome to another blog post by carer activist Matthew McKenzie. Here we explore 15 common examples of how mental health professionals may give carers a tough time, leading to devastating consequences for both carers and their loved ones. Learn how to advocate for better care and support.

If you want to watch the more detailed version of this blog, then watch the video lecture below.

Understanding the Role of Mental Health Carers

Before we dive into those examples, I thought it best to describe what a mental health carer is. Caring for a loved one with mental health issues is a deeply compassionate yet challenging role. Mental health carers often find themselves navigating complex healthcare systems, advocating for their loved ones, and juggling their own well-being amidst these responsibilities.

In many cases, these carers are unpaid and provide informal support, stepping in to manage medical needs, handle crises, ensure safety, and offer emotional support. Their contribution is critical not only for the immediate well-being of the individual they care for but also for their longer-term recovery and management of mental health conditions. However, this vital role often goes unrecognized, and carers can face significant obstacles when interacting with mental health professionals.

Common Challenges Faced by Mental Health Carers

Refusal to Share Relevant Information

One of the most prevalent issues carers encounter is the refusal of mental health professionals to share patient information. Even with the consent of the person in their care, carers may find themselves excluded from discussions about treatment plans, medication side effects, and progress updates. Of course, sometimes there are very good reasons not to share patient information, but when taken to the extreme, this lack of communication undermines their ability of the carer to provide effective support and leaves them unprepared for the responsibilities thrust upon them.

Impact on Carers

This exclusion can be devastating, leading to frustration and a sense of helplessness. When carers are kept in the dark, they cannot adequately prepare to manage the daily care needs or handle potential crises. This not only impacts their ability to perform their role but also adversely affects the person they are caring for.

Ignoring Carers’ Observations and Concerns

Carers often have valuable insights into the behavior and needs of their loved ones, gained through continuous and close contact. Unfortunately, these observations are sometimes dismissed by mental health professionals as exaggerated or irrelevant. Such dismissive attitudes can discourage carers from voicing their concerns and impede effective care.

Consequences of Dismissal

When carers’ observations are ignored, crucial signs of deterioration or emerging needs can be overlooked. This can lead to worsening conditions for the person receiving care and increased stress and frustration for the carer.

Minimizing the Carer’s Role

It is not uncommon for some mental health professionals to downplay the importance of carers, assuming that only trained professionals can understand and manage the patient’s needs.

Effect on Carers

This minimization not only belittles the carer’s valuable contributions but can also lead to feelings of exclusion and insignificance. Carers possess intimate knowledge of the individual’s behavior and history, which is critical for informing treatment and care strategies.

Unavailability or Unresponsiveness

Carers rely on timely communication with mental health professionals to manage care effectively. However, instances where care coordinators or therapists fail to return calls or emails are not rare, especially during crises or when urgent questions need answering.

Emotional Roller-Coaster for Carers

Lack of responsiveness can leave carers feeling abandoned and unsupported, contributing to high stress levels, anxiety, and, in severe cases, depression. This unresponsiveness can escalate crises and make it difficult for carers to maintain their well-being.

Dismissive Attitude Towards Cultural and Family Dynamics

Mental health services are often structured around a standard approach that may not take into account the cultural and family dynamics unique to each carer and patient. Professionals’ failure to consider these dynamics can lead to misunderstandings and misaligned care strategies.

Cultural Competency Matters

Carers from diverse cultural backgrounds might feel misunderstood and discriminated against, which can hinder their ability to advocate for their loved one effectively. Understanding and integrating cultural perspectives into care plans are crucial for holistic and effective mental health care.

Over-Reliance on Medication

Medication is frequently the go-to solution in mental health treatment plans. Yet, carers often witness the adverse effects and long-term dependencies this approach can foster.

Seeking Balanced Treatment Approaches

When carers express a desire for exploring alternative therapies or holistic approaches, their input can sometimes be overshadowed by professionals who insist on medication as the primary solution. This can leave carers feeling powerless and concerned about the long-term health of their loved ones.

Refusing to Adjust the Care Plan

Despite compelling evidence and frequent observations from carers regarding adverse effects or ineffectiveness of current treatments, some mental health teams might refuse to adjust care plans.

Importance of Flexible Care Plans

Such rigidity can build tension and frustration, leading carers to disengage from the mental health team. Flexible and responsive care plans that incorporate feedback from both carers and patients are essential for effective mental health care.

Additional Examples of Professional Barriers

Complex Medical Jargon

The use of medical jargon without explanation can intimidate and confuse carers, who may not possess a medical background. This practice can hinder their ability to understand their loved one’s condition and the treatment being provided.

Ensuring Understanding

Mental health professionals must communicate in plain language and offer thorough explanations to ensure that carers fully grasp the situation and can participate effectively in the care process.

Lack of Crisis Preparation

Carers often find themselves unprepared for handling crises such as severe mood swings or psychotic episodes due to inadequate guidance from mental health professionals.

Providing Proper Training

Providing carers with specific training and information on managing potential crises is critical for ensuring the safety and stability of both the carer and the person being cared for.

Defensive Attitudes

When carers seek clarification or suggest second opinions, defensive responses from mental health professionals can further alienate them.

Fostering a Collaborative Environment

Professionals should foster an environment of open communication, where carers feel comfortable and supported in advocating for their loved ones without fear of hostile reactions.

Dismissing Feedback from Other Health Professionals

When feedback from other healthcare providers like GPs or specialists is dismissed, it can create conflicting treatment approaches.

Integrating Multi-Professional Feedback

Considering input from various health professionals is essential for comprehensive and cohesive care. It ensures that all aspects of the individual’s health are being addressed in a coordinated manner.

Providing Inconsistent Information

Conflicting information from different team members can cause confusion and reduce trust in the mental health team.

Ensuring Consistency

Regular team meetings and clear communication protocols are necessary to ensure all team members provide consistent and accurate information to carers.

Ignoring Carers’ Need for Education

Carers often require education and resources to adequately understand and support their loved ones. A lack of guidance can prevent carers from fulfilling their role effectively.

Empowering Carers with Knowledge

Mental health professionals should provide carers with access to educational resources and training to empower them in their caregiving role.

Conclusion

Caring for someone with mental health issues can be demanding and requires robust support from healthcare professionals. Recognizing and addressing the challenges faced by carers is essential for the well-being of both the carers and those they care for. It’s important for mental health professionals to work collaboratively with carers, respecting their insights and ensuring they are equipped with the necessary information and support. Through awareness, education, and advocacy, we can foster a more inclusive and effective approach to mental health care, ultimately benefiting everyone involved.

South West London Mental Health carers October 2024 update

Here is a brief update of the South West London mental health carers forum. The runs once a month. The group starts with a carer peer support session run by Ava.

The meeting introduced Rosetta Life, an arts and health charity that creates accessible creative projects for carers and those with life-altering illnesses. Attendees discussed the organization’s various initiatives, including poetry workshops, dance programs, and digital projections, as well as their funding sources and collaboration with other charities and healthcare providers. The group also explored potential future projects, challenges in engaging participants, and the importance of offering clear benefits to encourage involvement in their programs.

Introducing Rosetta Life’s Carer Projects

In the meeting, Matthew and Ava introduced Lucinda, the creative director of Rosetta Life, an arts and health charity that aims to make creativity accessible to those living with life-altering illnesses or caring for someone with such illnesses. Lucinda shared the charity’s work with carers, including a project called “The Heart of Care” that began in lockdown. This project involved creating a carer’s chorus, online poetry workshops, and dance workshops to explore the anatomy of caring. The project culminated in digital projections onto public spaces in Kingston, Newcastle, Bristol, and Delhi, aiming to raise awareness of the challenges faced by carers. Lucinda also mentioned an upcoming 360 immersive film and animation project to further raise awareness of the lives of unpaid carers. The attendees expressed their appreciation for the initiative and its potential impact.

Carer Support Across Life Stages

A carer and Lucinda discussed the organization’s work with carers across various life stages, including young carers, parent carers, and grandparent carers. Lucinda explained that they work with a network of freelance artists and a core team, and are funded by the Arts Council, City Bridge Trust, and other trusts and foundations. The organization’s services are free at the point of access, and they align themselves with the NHS. Lucinda also mentioned that they work with charities to ensure safeguarding and referral safety. A carer asked about the organization’s outreach methods and whether they work with carers supporting those with dementia. Lucinda confirmed that they do work with such carers, but rely on charities for referrals and safeguarding. The carer member suggested that the organization could work with NHS trusts to provide carer support, which Lucinda agreed was a good point.

New Carer Program and Animation

The carer group discussed a new program for carers, which will be online and tailored to their needs. Lucinda showed a short film related to the program, which Matthew has shared in this blog post. Lucinda also mentioned a new animation project for the program. A carer expressed interest in the program and asked for more information. Matthew offered to write a blog post about the session for those who couldn’t attend.

Kingston Marketplace and International Poetry

Matthew expressed his delight at seeing the work that was created projected in Kingston Marketplace. Lucinda discussed the work they do with carers, including a peer support exchange with India and South Africa, and the possibility of running an online platform with poetry prompts for carers. She also offered to send the full film to Matthew for sharing. Other carer members showed interest in the international poetry workshops and the potential for a poetry workshop for their group. Lucinda agreed to consider their ideas for future projects.

This concludes a brief update of the SW mental health carer forum.

Lewisham Mental Health carer forum – October 2024 update

Welcome to a brief update of my Lewisham mental health carer forum aimed at those caring for someone living with mental illness.

Forum update for October

Matthew Mckenzie led a meeting for mental health carers, introducing new members and discussing essential questions for service users’ care and treatment. The group explored various aspects of mental health care, including diagnosis, treatment plans, medication, legal rights, and the importance of carer involvement in the recovery process. The conversation ended with a presentation on the challenges faced by unpaid carers and a discussion on the importance of peer support and knowledge empowerment for carers navigating the mental health system.

Mental Health Carer Group Organizing

Matthew Mckenzie, who has lived experience of being a mental health carer was the group organizer. He led a meeting with various carers and professionals. Matthew introduced himself and his various groups, including one for South West London.

He also mentioned his carer website and the previous meeting’s link. Matthew then proceeded with introductions from various attendees who also are unpaid carers. Matthew then introduced Nadine, the new Lewisham Mental Health Carer’s social worker, who shared her role and responsibilities. The conversation ended with Matthew planning to present on what carers need to prepare for if they’re going to end up in a role with mental ill health.

Carer Support Worker’s Role and Plans

In the meeting, Nadine Denniss-Baker discussed her role as the new Lewisham carer’s support worker, emphasizing her commitment to understanding and addressing the needs of carers. She highlighted her involvement in various groups, including a carer’s group and carer’s champions meetings, and her plans to update and expand these initiatives. Nadine also shared her personal experiences as a carer and her professional background as an approved mental health professional. She discussed the importance of transparency and the need for better communication and collaboration between different organizations and groups. Also discussed was the potential for Nadine to attend national meetings and share best practices with other trusts. The conversation ended with a discussion on the importance of sharing good practice documents and resources to support carers and staff.

Introducing New Members and Questions

Matthew led a meeting where he introduced two new carer members group. Matthew then presented a list of essential questions for carers to ask regarding service users’ care and treatment, which he plans to blog about in the future. He also mentioned that he would record the meeting for those who couldn’t attend. The meeting was part of a carer’s forum, and Matthew emphasized the importance of carers being aware of these questions to better support their loved ones using mental health services.

Understanding Mental Health Diagnosis and Treatment

Matthew discussed the importance of understanding the diagnosis and treatment plan for a loved one’s mental health. He emphasized the need to ask about the current diagnosis, treatment plan, and the effectiveness of the treatment. Matthew also highlighted the importance of monitoring side effects and the potential for medication adjustments. He stressed the need for carers to engage with the multidisciplinary team, including primary contacts, and to inquire about the roles of specialists like occupational therapists. Matthew also mentioned the importance of understanding the medication’s purpose, dose, and potential side effects, and the need to clarify with the loved one if they can refuse medication. He concluded by emphasizing the importance of education regarding medication and mental health

Discussing Relapse and Care Plans

Matthew also highlighted the importance of asking about signs of relapse and what to do in emergencies, as these should be included in the care plan. Another member of the carer group, Faith mentioned a carer’s emergency card discussed at a recent forum, which Matthew agreed was a valuable tool. The group agreed on the need for a two-way conversation about relapse signs and for these to be recorded for quicker response times.

Carer Awareness, Training, and Rights

Matthew emphasized the importance of carer awareness and training, urging carers to ask questions and seek clarification when necessary. He also highlighted the need for carers to know their rights and how to make complaints if they’re not satisfied with the care provided. A carer suggested adding a section on how to make a complaint, which Matthew agreed to include in his future lectures. A carer stressed the importance of knowing the names of the care team and their managers to ensure effective communication and support. Matthew concluded by discussing the need for carers to understand what information can be shared with them, and the importance of obtaining consent from their loved ones to be involved in their care.

Involving Carers in Recovery Plans

Matthew discussed the importance of involving carers in the recovery plan of their loved ones, especially when they are living with them. He emphasized the need for a comprehensive care plan, which should be shared with the carer and the service user. Matthew also highlighted the importance of establishing specific goals for the service user’s mental health and social well-being. He suggested asking essential questions about the discharge plan, support after discharge, and the involvement of the community mental health team. Matthew also stressed the need for carers to understand the goals set for the service user’s recovery and to ask for practical advice on how to support their loved one. He concluded by mentioning the need for carers to know the roles and responsibilities of the care coordinator and other team members.

Challenges of Unpaid Carers in Borough

In the meeting, Matthew presented a detailed account of the challenges faced by unpaid carers in the borough, highlighting the what type of support and resources available to them. Carers discussed the need for better advertising and involvement of carers in services. A carer raised a question about encouraging carers to be more involved in services, to which Matthew responded that it’s a challenge due to the carers’ heavy workload. Matthew agreed to share his presentation in PDF format and to write a blog on the topic. Several carers expressed appreciation for Matthew’s presentation, noting that it provided a clear guide for navigating the complex network of resources and services.

Challenges of Carers and Peer Support

The carer group discussed the challenges faced by carers and the importance of peer support. A carer shared their experience of dealing with the mental health system, highlighting the lack of support and the invisibility of carers. Matthew emphasized the need for carers to be equipped with knowledge to ask specific questions during meetings to avoid being lost in the system. A carer asked another member about her experience of caring for her loved one regarding psychosis, and the carer responded by shared her journey, highlighting the importance of peer support and retaining hope. Matthew ended the conversation by encouraging the use of triangle of care and inviting everyone to attend future meetings.

World Stroke Day 2024: Tip on caring for someone affected by Stoke

Welcome to a blog post by carer activist Matthew McKenzie on promoting World Stroke Day 2024.

If you want to see the video on World Stroke day 2024, then please click on the link below.

Here you can learn about the importance of stroke prevention, recognition, and treatment. Discover key points on awareness, prevention, support for survivors, and global cooperation. Care tips for stroke survivors included.

Raising Awareness for World Stroke Day 2024

World Stroke Day 2024 is approaching, with the global health community marking October 29th on their calendars. This day is dedicated to raising awareness about stroke prevention, recognition, and treatment. The theme for this year is “#GreaterThanStroke,” emphasizing the importance of community support and encouraging active lifestyles to mitigate stroke risks. In this article, we will delve into the key aspects of this awareness campaign and provide valuable insights into stroke prevention and recovery.

Understanding the Importance of World Stroke Day

Understanding why World Stroke Day is significant is the first step in joining the movement for better stroke awareness and prevention. On this day, health organizations, caregivers, and stroke survivors come together to drive home the message that strokes can be prevented and managed effectively with the right knowledge and resources.

Raising Awareness

Raising awareness is paramount when it comes to stroke. Knowing the risk factors, recognizing the symptoms, and understanding the importance of quick medical intervention can save lives. Fast response to a stroke can significantly reduce the chances of long-term disabilities. Public education campaigns aim to arm everyone with the knowledge to act swiftly in the event of a stroke.

Stroke Prevention

Prevention is better than cure, and this holds particularly true for strokes. Making simple lifestyle changes can significantly reduce an individual’s stroke risk.

Healthy Diet

A balanced diet is crucial for stroke prevention. Consuming fruits, vegetables, whole grains, and lean proteins while reducing salt, sugar, and saturated fats can help maintain a healthy weight and lower blood pressure, which are significant risk factors for strokes.

Regular Exercise

Engaging in regular physical activity helps maintain cardiovascular health, reduces stress, and manages weight—all factors that contribute to a lower risk of stroke. Aim for at least 150 minutes of moderate-intensity exercise each week.

Quitting Smoking

Smoking is a major risk factor for strokes as it damages blood vessels and increases blood pressure. Quitting smoking can significantly reduce your risk of a stroke.

Supporting Stroke Survivors

Supporting stroke survivors is as important as prevention. Advocating for resources, rehabilitation, and caregiver support can significantly improve the quality of life for stroke survivors.

Stroke-Related Changes

Stroke survivors often face numerous physical and cognitive changes that can impact their daily lives. Understanding these changes is essential for providing meaningful care.

Physical Limitations

Physical limitations such as weakness or paralysis, speech difficulties, and cognitive challenges like memory and problem-solving issues are common among stroke survivors. Recognizing these limitations helps in creating supportive environments and activities tailored to their capabilities.

Emotional Effects

Emotional effects such as depression, anxiety, and mood swings can also be prevalent. Being aware of these psychological challenges helps in offering compassionate support and understanding.

Assisting with Daily Activities

Simple tasks can become challenging for stroke survivors. Your support in daily living activities is invaluable. Assist with tasks like dressing, bathing, and eating to help them regain independence gradually.

Encouraging Rehabilitation

Rehabilitation is key to recovery. Encouraging stroke survivors to stick to rehab routines can make a significant difference in their progress. Patience and consistent support are vital here.

Supporting Communication

Communication difficulties are common post-stroke. Helping stroke survivors express themselves and understand others better can alleviate frustrations and improve their overall well-being. Encourage the use of communication aids if necessary.

Promoting Emotional and Psychological Well-Being

Being there for stroke survivors emotionally and encouraging activities that boost their mood can greatly aid their rehabilitation. Social interactions and hobbies can enhance their quality of life.

Managing Health and Medical Care

Regular checkups and managing medications are crucial aspects of post-stroke care. Ensure that medical appointments are kept and medications are taken as prescribed to prevent secondary strokes and other health complications.

Adapting the Living Environment

Making the living environment safe and accessible is essential. This may involve installing grab bars, ramps, or rearranging furniture to facilitate easier movement and reduce fall risks.

Caring for Your Own Well-Being

As a caregiver, it is important to take care of your own well-being. Remember, you can’t pour from an empty cup. Taking time for yourself, seeking support when needed, and managing stress are crucial to sustaining your ability to provide care.

Long-Term Planning

Setting realistic goals together and celebrating every small victory is important for the long-term recovery of stroke survivors. Understand that recovery is a marathon, not a sprint. Patience and perseverance are key.

Encouraging Global Cooperation

Improving stroke prevention and care worldwide is a collective effort that requires community engagement, support from health care systems, and proactive policies from policymakers.

Engaging Communities

Communities play a significant role in raising awareness and providing support to stroke survivors. Local groups can organize events, workshops, and provide resources to educate the public about stroke risks and prevention strategies.

Health Care Systems

Health care systems must be equipped to provide timely and effective stroke care. This includes having trained personnel, appropriate infrastructure, and necessary medical supplies to treat strokes and support long-term rehabilitation.

Policy Makers

Policymakers have the power to enact changes that can improve stroke care and prevention. Advocating for policies that promote healthy lifestyles, fund stroke research, and support stroke care facilities can create significant positive impacts.

Conclusion

World Stroke Day 2024 is more than just a date on the calendar. It is a call to action, urging us all to contribute to reducing the global burden of stroke. By raising awareness, adopting healthier lifestyles, supporting stroke survivors, and fostering global cooperation, we can truly make this year’s theme “#GreaterThanStroke” a reality. Your support and actions play a crucial role in helping stroke survivors reclaim as much independence and joy as possible. Let’s come together to make a difference and ensure that stroke prevention and care continue to improve worldwide.

National cancer caregiver forum – October 2024 update

Welcome to a brief update from Carer activist Matthew McKenzie on the national cancer carer forum.

This group is online and is a mix of a peer group and engagement for those who care for someone with cancer.

Quick update for the Cancer carer group October 2024

Matthew, a mental health advocate, hosted the National Cancer Carers Forum and discussed the challenges of being a cancer caregiver, emphasizing the importance of understanding the diagnosis and treatment plan, seeking support, and planning for the future.

Also discussed was practical day-to-day care for someone undergoing cancer treatment, the importance of self-reflection and mental health support for carers, and the need for caregivers to advocate for patients and manage potential side effects of treatments. The conversation ended with requests for future discussions on accessing clinical trials, supporting caregivers’ mental health, and guidance on what to do if the primary caregiver is unavailable.

Understanding Diagnosis and Treatment Plans

Matthew discussed the importance of understanding the diagnosis and treatment plan for a loved one, particularly in mental health cases. He emphasized the need to be aware of any side effects from medication or treatment and to relay these concerns to the healthcare professionals. Matthew also mentioned the potential for a future session focusing on engaging with the NHS professionals and understanding who to ask questions to at different stages of the cancer journey.

Cancer Caregiving, Self-Reflection, and Planning

Matthew discussed the importance of self-reflection and planning for future recovery and well-being, particularly in the context of cancer caregiving. He emphasized the need for mental health support for cancer carers emotional struggles and the importance of setting goals and monitoring changes in the condition of the loved one. Matthew also stressed the importance of educating oneself about the cancer condition and seeking support from different groups. He suggested that training and workshops could be beneficial for gaining insight and planning for the future

Caregiver Challenges and Emotional Support

Matthew discussed the challenges faced by caregivers in advocating for patients and managing potential side effects of treatments. He suggested that caregivers should attend medical appointments to stay informed and asked for questions to be emailed to him for further research. Matthew also emphasized the importance of emotional support for both the patient and the caregiver, suggesting that caregivers should be sensitive to the patient’s feelings and avoid constant positivity. He mentioned that he would run a group again in the next month to further discuss these topics.

This concludes the brief update of the National cancer care group for October

Escalating complaints as an unpaid carer

Welcome back to another blog post by carer activist Matthew McKenzie. I usually blog to help to educate unpaid carers on navigating health systems and strengthening their carer identity.

Today we are looking at why and how carers can escalate complaints if disatisfied about responses from health or social care services.

I have also done a video if you wish to see examples of complaints and escalations. (23 Minutes). Please click on the video below to watch.

As an unpaid carer you can learn how to navigate escalating complaints in unpaid care, from informal concerns to legal action and media attention. Empower yourself to advocate for quality care and address systemic failures effectively.

Introduction

Navigating the complexities of healthcare systems can be challenging, especially for unpaid carers who dedicate themselves to looking after a loved one struggling with long-term mental or physical health issues.

Often, situations may arise where the care being provided falls short of acceptable standards, compelling carers to lodge complaints. Unfortunately, not all carers are well-informed about how to escalate these complaints effectively. This blog provides a comprehensive guide to unpaid carers on escalating complaints in various stages, from initial informal resolutions to severe legal actions.

Understanding the Importance of Complaints

Before delving into the stages of complaint escalation, it’s crucial to understand why raising concerns and complaints is so important. Complaints serve multiple purposes—they highlight deficiencies in the system, enforce accountability, and, most importantly, ensure that the care recipient gets the best possible treatment. Carers must recognize that it’s their right to complain if the services provided do not meet acceptable standards.

Initial Steps for Complaints

Informal Concerns and Basic Level

The first step in resolving any issue should ideally be informal, characterized by direct and immediate communication with the professional involved. This could be a social worker, care coordinator, or any key member of the mental health team.

Preparing for the Meeting

Preparation is key to a successful resolution. Carers should come equipped with detailed notes, including dates and instances of lapses or failures. Bringing along the service user’s care plan can lend weight to the complaint and provide a concrete reference for the discussion. This method is most effective for minor issues such as delays in communication or minor discrepancies in the care plan.

Escalating to Written Complaints

Intermediate Level

If informal attempts do not yield satisfactory results, the next step is to submit a formal written complaint. This involves documenting all concerns, efforts made to resolve them, and any pertinent evidence.

You can also contact your local Healthwatch to feedback on services or get advice on the best way to complain.

Writing the Complaint

When writing the formal complaint, ensure to:

Detail your concerns comprehensively
Include records of prior communication attempts and failures
Provide specific dates and names of the individuals involved
Clearly state your desired outcome

Timeframes for Resolutions

Generally, service providers are required to acknowledge receipt of the complaint and provide a timeline for investigation, usually ranging from 20 to 40 working days, depending on the complexity of the issue.

Seeking Mediation and Further Assistance

Escalation to PALS or Advocacy Services

If the issue remains unresolved, carers can seek help from PALS (Patient Advice and Liaison Service) or advocacy services. These intermediate-level services can provide guidance, represent the complainant, and even escalate the complaint within the service provider’s framework.

Contacting PALS or Advocacy Services

PALS offers confidential advice and can work as intermediaries between the carer and the care team, helping to navigate the complaints process effectively. Advocacy services can assist in drafting the complaint and ensuring that all necessary documentation is in order.

Formal Regulatory Bodies

Advanced Level

In cases of unresolved issues, escalating the complaint to regulatory bodies like the Health Service Ombudsman or Care Quality Commission (CQC) becomes necessary.

The Role of Regulatory Bodies

These bodies can investigate the case further, ensuring that the complaint is handled fairly. The CQC, although not handling individual complaints, can trigger inspections if there are significant failings in service provision.

When to Use Regulatory Bodies

This step is most appropriate for serious concerns such as poor care quality, negligence, or unsafe practices. Carers should be aware that investigations by these bodies can take considerable time.

Legal Action

Severe Level

When harm, serious malpractice, or gross negligence is involved, seeking legal advice may be the next appropriate step. This involves consulting a solicitor specializing in healthcare or mental health law.

Preparing for Legal Action

Selecting the right solicitor involves thorough research. Often, mental health law solicitors have extensive experience dealing with such cases and can offer valuable advice on the viability of pursuing legal action

When to Consider Legal Action

Legal action is usually reserved for extreme cases involving significant harm or death of the service user due to negligence or severe violations of rights. Legal channels can offer compensation and bring justice, albeit at a financial and emotional cost.

Public Campaigns and Media Attention

Escalation to Media and Public Campaigns

As a last resort, if internal and formal channels fail, bringing the issue to the public through media or social campaigns might be necessary. This becomes relevant when the issue represents a systematic failure affecting multiple service users or carers.

Steps to Engage Media or Public Campaigns

Carers can contact press organizations, social media channels, mental health advocates, or relevant charities, such as Mind or Rethink Mental Illness, to amplify their concerns.

The Role of MPs and Other Influential Bodies

Sometimes reaching out to local Members of Parliament (MPs) can also lend significant weight to a complaint, ensuring that it gets the attention it deserves. MPs can raise systemic issues within parliamentary forums, adding another layer of accountability for the service providers.

Summary

Navigating the complaint process within healthcare systems is a multi-tiered approach, designed to ensure that carers’ voices are heard at different levels of severity. Starting from informal resolutions, progressing to written complaints, and escalating to regulatory bodies or legal action, the system provides various stages for addressing concerns. If all else fails, public campaigns and media attention can serve as powerful tools to bring systemic issues to the forefront. Understanding these steps empowers carers to advocate effectively for their loved ones, ensuring that they receive the care and support they rightfully deserve.

By following this structured approach, unpaid carers can raise concerns at appropriate levels, ultimately ensuring that their voices are heard and acted upon, bringing about meaningful change in the system.

Remember complaining about a service is never that easy, full of stress and worries, but if we do not complain then how can health and social care services improve?

It is your right to complain as a carer if you are unhappy with results. Use it!!

Ethnic mental health Carer Forum Update October 2024

Welcome to a brief update of my National ethnic/global community carer forum aimed at those caring for someone living with mental illness.

Here is a brief summary of October’s ethnic carer forum.

The mental health carers forum discussed updates on carer’s work stream, the launch of the carer strategy at North East London NHS FT, and an event focused on upstreaming care and black men’s mental health. The group also discussed a research project involving carers and patients, the Rethink Mental illness on involvement in the IMPACT Network, and the Patient and Carer Race Equality Framework. Lastly, the importance of representation on CQC boards, tackling health inequalities in England, and the need for continued advocacy for change were highlighted.

Mental Health Carers Forum Updates

Matthew Mckenzie, the organizer of the mental health carers forum, introduced the event and its purpose. He mentioned that the forum is a platform for carers of minority groups to learn about new initiatives and updates from researchers and NHS trusts. Matthew also introduced Asia Zaman, the Transformation Project Manager for NELFT, who shared updates about the carer’s work stream and the upcoming launch of their carer strategy. Erica Deti, the PCREF Lead for NELFT, then discussed an event focused on upstreaming care and black men’s mental health. She highlighted the event’s success in engaging the community and the importance of incorporating creativity and cultural aspects into their work. Matthew also shared pictures from the event, which some can be seen below.

Anti-Racism Event and Carer Involvement

Matthew expressed his positive experience at the NELFT event focused on anti-racism, highlighting the multi-organizational nature of the event and the shared learning opportunities it provided. He also mentioned the launch of the Carers strategy, which he found interesting. Erica confirmed that they would be sharing the findings and learnings from the event with the group.

Marta Chmielowska at researcher at PhD Candidate in Clinical Psychology at UCL then presented her research project, which aimed to involve carers in the conversation about treatment and care in mental health services. She shared a questionnaire she developed and expressed her desire to promote it to encourage carers to participate

Marta’s Carer and Patient Project

Matthew opened the floor for any quick questions or comments for Marta, who had just presented on her project involving carers and patients. Matthew also mentioned that he would share the details of the project on his website. Marta then discussed her project, which involves a questionnaire for carers and patients to share their experiences. She mentioned that the project is online due to logistical reasons and that she has been in touch with various carer groups and charities.

For more details see poster below or email : m.chmielowska@ucl.ac.uk

Rethink Mental Illness Joins Impact Network

Ian and Ruqia from Rethink Mental Illness discussed the organization’s involvement in the Impact Network, a national organization focused on strengthening inclusion and anti-racist practice. The network, coordinated by the Universities of Birmingham and Sheffield, aims to put policy into practice and is action-oriented. The network meets four times over the next year and will decide on an action plan based on discussions and ideas. Ian and Ruqia encouraged interested individuals, including those with lived experience of severe mental illness and professionals in the mental health sector, to express their interest via email. They also mentioned that Rethink Mental Illness may have other opportunities in the future for those interested in their work.

CQC focus on Patient and Carer Race Equality Framework

Ciara and Giovanna discussed the Patient and Carer Race Equality Framework, a project they’ve been involved in since its inception. Giovanna, a senior analyst at the Care Quality Commission, explained the CQC’s role as the independent regulator of health and adult social care in England, and their oversight of almost 30,000 adult social care services. They also touched on their upcoming work, including the integration and coordination of the framework with their existing projects.

Giovanna also mentioned the publication of their annual statutory report, the State of Care report, and the legislative duties imposed on providers to register with them. The conversation ended with a discussion on the mandatory nature of the framework for all mental health trusts and NHS-funded mental health services.

Incorporating PCREF Into Regulation

In the meeting, Ciara discussed the role of the CQC incorporating the Patient and Carer Race Equality Framework (PCREF) into their regulation. They have developed interim guidance and training, and plan to use PCREF to inform their next set of guidance. They also intend to update their learning and training to support a more detailed understanding of PCREF. Ciara also mentioned the importance of including the voices of carers from ethnic minority backgrounds in their engagement and co-design of the PCREF guidance and training. The organization itself is also committed to being an anti-racist organization and plans to engage with stakeholders to add value. They are currently collecting good examples of feedback and good practice from their inspectors and mental health reviewers, and from pilot trusts. They also plan to share these examples in their monitoring the Mental Health Act Report.

For those interested, here are reports the CQC kindly presented.

Review into the operational effectiveness of the Care Quality Commission: interim report
https://www.gov.uk/government/publications/review-into-the-operational-effectiveness-of-the-care-quality-commission

Response to the interim findings of the Dash review into
CQC’s operational effectiveness
https://www.cqc.org.uk/news/stories/response-interim-findings-dash-review

Review into the operational effectiveness of the Care Quality Commission: full report
https://www.gov.uk/government/publications/review-into-the-operational-effectiveness-of-the-care-quality-commission-full-report

Professor Sir Mike Richards’ Review of CQC’s single assessment framework and its implementation
https://www.cqc.org.uk/publications/review-cqcs-single-assessment-framework-and-its-implementation

CQC responds to reviews by Dr Penny Dash and Professor Sir Mike Richards
https://www.cqc.org.uk/press-release/cqc-responds-reviews-dr-penny-dash-and-professor-sir-mike-richards

Mental Health Services Data Set

The CQC discussed the ongoing work on the mental health services data set, Version 7, which is expected to be implemented slightly later than planned to align with legislative changes. They emphasized the need for balance in managing changes to avoid disruption. A mental health trust representative asked about the new data set and review process, to which the CQC responded that they have had not heard about a new data set. A carer asked the CQC about the changes in CQC’s leadership and systems, to which the CQC confirmed significant changes and a new chief executive. Another carer asked for links to recent reports about CQC’s situation, which the CQC agreed to provide.

Representation and Board Member Experiences

Giovanna and Ciara discussed the importance of representation at their CQC board, particularly in terms of ethnicity and experiences using services. The CQC agreed to find out more about the personal backgrounds of their board members and the potential for a new board member with relevant experiences. The conversation also touched on the lack of representation of certain groups, such as clinical psychologists, in their organization. Matthew suggested that the CQC could engage with the group again in the new Year and possibly write a blog about minority mental health care.

Addressing Health Inequalities in England

Leila from The King’s Fund discussed a project focused on tackling health inequalities in England. The project, which has been ongoing since 2020, aims to identify key areas for action to be included in the anticipated 10-year health plan. Leila highlighted seven areas for action, including a cross-government strategy to address the root causes of inequality, a shift towards prevention, radically changing relationships between the NHS and communities, tackling systemic racism and discrimination, capacity building, focusing on the importance of place in this work, and prioritizing partnerships with voluntary community and social enterprise organizations.

Leila emphasized the importance of amplifying the voices of people who experience these inequalities and ensuring that these messages are heard and acted upon. The project’s findings are not new, but Leila stressed the need to continue raising awareness and advocating for change.

This concludes a short update of October’s National ethnic carers forum