Tag Archives: NHS

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

Importance of Involving Families and Carers in Hospital Care

Welcome back to another carer awareness blog post by Matthew McKenzie, carer activist and author. This time I want to raise awareness of involving unpaid carers when their loved one has been admitted to accute hospital care. To view an indepth version, please watch the video below (25 mins long). Unfortunately I messed up the presentation a bit.

In this blog post we discover the crucial role of families and carers in hospital care, from enhancing communication to improving patient satisfaction. Explore the benefits of family engagement and the impact on patient recovery.

The Importance of Carer Involvement in Hospital Care

When loved ones are taken into acute care in hospitals, the role of unpaid carers and family members becomes paramount. However, many carers find themselves at a loss, not knowing what to ask or how to be involved in the care process. On the other hand, healthcare professionals might not be well-equipped to engage with carers effectively. This article aims to explore the significance of carer involvement in hospital care, providing insights and guidelines for both healthcare professionals and unpaid carers.

Encouraging Visits

One of the first and most crucial steps is to encourage visits from family members and unpaid carers. Emotional support from loved ones can significantly reduce the anxiety and fear of patients, contributing to their overall healing process. While this might not apply in every situation, particularly for patients who are communicative and understand why they’re in the hospital, it’s especially important for those who are severely unwell or suffering from mental health conditions.

Better Communication

Involvement of family members enhances communication, allowing them to share vital information about the patient’s history, preferences, and needs with healthcare providers. This is particularly beneficial for patients who may find it challenging to communicate effectively due to their condition. By integrating the carer’s perspective, healthcare professionals can make more informed decisions, ensuring a more comprehensive understanding of the patient’s situation.

Benefits of Family Engagement

Emotional Support

Family engagement provides essential emotional support, which can motivate the patient to recover more effectively. Knowing that there’s someone rooting for them can significantly impact a patient’s willingness to adhere to treatment plans and protocols.

Advocacy

Carers can act as advocates for the patient, ensuring their voice is heard, especially in complex medical scenarios. This is crucial for patients who may not be able to advocate for themselves, such as the elderly or those with mental health issues.

Enhancing Communication Through Carer Involvement

Understanding Patient History

When family members visit, they bring invaluable insights into the patient’s history and preferences, which can be instrumental in tailoring the care provided. This ensures that healthcare professionals have the most accurate and up-to-date information, thereby improving the quality of care.

Shared Decision Making

Collaboration with family members in treatment decisions ensures alignment with patient values. Failing to involve carers can lead to a higher risk of readmission, as the patient might be discharged without proper support or understanding of their condition.

Impact on Patient Recovery

Emotional Support and Encouragement

Emotional support from family members can significantly reduce the patient’s anxiety and foster a sense of hope, encouraging them to adhere to treatment plans and look forward to recovery.

Enhancing Treatment and Care Plans

Family involvement can also enhance treatment and discharge plans, ensuring they are more comprehensive and suited to the patient’s needs. This collaborative approach helps in creating a more effective care plan, reducing the likelihood of complications or readmission.

The Role of Healthcare Providers

Providing Information

Healthcare providers need to ensure that family members and unpaid carers are well-informed about the patient’s condition, treatment plans, and potential discharge details. This is vital for the carer’s preparedness and ability to provide effective care post-discharge.

Effective Communication

Hospitals should facilitate effective communication by providing resources like leaflets about available services and how to navigate the healthcare system. This not only helps in ensuring the patient’s needs are met but also empowers carers to communicate effectively with healthcare providers.

Advocacy Resources

There should be advocacy resources available on-site or through referrals, helping carers navigate the complex healthcare system. This ensures that carers are not left in the dark and can effectively support their loved ones.

Holistic Approach to Care

Emotional and Physical Needs

A holistic approach to care considers both the patient and the carer’s emotional and physical needs. While the primary focus is on the patient’s recovery, ignoring the carer’s well-being can lead to a less effective care environment.

Comprehensive Healing Environment

Creating a comprehensive healing environment involves addressing the emotional distress of both patients and their families. This can lead to better overall outcomes and a more supportive atmosphere for recovery.

Recommendations for Improving Carer Involvement

Clear Communication Channels

Establishing clear communication channels between healthcare providers and family members is essential. This ensures that information flows seamlessly and that both parties are on the same page regarding the patient’s care.

Active Participation

Encouraging active participation from carers in the decision-making process ensures that they are engaged and informed. This collaborative approach leads to better health outcomes for the patient.

Educational Resources

Providing educational resources helps carers understand the patient’s condition and treatment plan better. This is crucial for ensuring that they can provide effective care post-discharge.

Collaborative Care Planning

Involving carers in care planning and goal-setting ensures that treatment plans are aligned with patient values and that the carer is prepared for their role. This collaborative approach reduces the risk of complications and readmission.

Conclusion

In summary, involving family members and unpaid carers in hospital care is crucial for improving patient outcomes. By encouraging visits, enhancing communication, and providing necessary resources, healthcare providers can ensure a more holistic and effective care environment. This not only supports the patient’s recovery but also empowers carers to take on their roles confidently and effectively.

Empowering Caregivers: Engaging with Integrated Care Systems

Another blog post by carer activist Matthew Mckenzie on how caregivers can engage with Integrated Care Systems to ensure their voices are heard and needs are met. A way to discover the power of feedback in improving local Health Services.

To watch the video version of my blog, click below

Integrated Care Systems (ICS) have been shaping the landscape of healthcare in the UK for several years now. These ICSs are designed to ensure that health services meet the unique needs of local communities, ICSs are evolving frameworks within the National Health Service (NHS). They aim to promote a more collaborative approach to healthcare by engaging with everyone involved in the health service delivery—including professionals, patients, and carers….yes, thats right! Unpaid carers, but how can unpaid carers get their voice heard?

Well if you are caring for someone unpaid with a long term illness, then understanding how these systems work is crucial for anyone reliant on or working within the NHS. This article delves into what ICSs are, their importance, and how carers can make their voices heard within these systems.

What is an Integrated Care System?

As noted in my video. An Integrated Care System (ICS) is essentially a model used within the UK’s NHS to better structure how health services are commissioned and provided. Before ICSs were implemented, health services were commissioned in a somewhat isolated manner, which often didn’t fully account for the comprehensive needs of the community. There were other reasons for the change to ICS, but that would be for another blog post.

The Need for Engagement

At the heart of an ICS is the concept of engagement. For an ICS to be effective, it must listen to the very people who use and provide the health services. This involves unpaid or informal carers, patients, and other healthcare providers all collaborating to ensure that the healthcare services are as effective and efficient as possible

The Role of Commissioning

Commissioning still plays a central role within ICSs. Commissioners work to ensure that the right health services are provided, but their decisions must be informed by feedback from carers as well. This is where the role of carers becomes critical. By participating in the engagement process, carers can help shape the nature and delivery of healthcare services to better meet their needs as well as those of the patients. Carers should have a seat at the table.

Local Healthwatch

One of the most effective ways to engage with an ICS is through your local Healthwatch. Healthwatch organizations are pivotal stakeholders within ICSs. They gather insights from patients, carers, and the general public to inform health service delivery.

Find Your Local Healthwatch: Simply type “Healthwatch” and your local area (e.g., Healthwatch Kent, Healthwatch Lambeth) into a search engine. This will provide you with details on meetings, agendas, and how to participate.
Attend Meetings: When possible, attend local Healthwatch meetings to stay informed and voice your concerns.
Provide Feedback: Whether through surveys, forums, or direct communication, your feedback is invaluable.

Speaking Up

Even if you can’t make it to meetings, there are other ways to ensure your carer voice is heard. It could be as simple as sending an email or filling out a survey provided by your local Healthwatch.

Importance of Feedback: Your insights are gold in terms of showing what works and what doesn’t within the current healthcare framework. Sharing your story—whether it’s good, bad, or ugly—can spotlight gaps and prompt necessary changes.

Advocating for Transparency

As mentioned in my video, one crucial area carers should focus on is advocating for transparency in the ICS decision-making process. Are carers and caregivers’ experiences included when tailoring health services?

Be Specific: When you provide feedback or attend meetings, be specific about what issues need addressing. Whether it’s concerning mental health services or care for chronic conditions, specificity helps stakeholders understand and prioritize your needs.
Persistent Engagement: Continuously engage with the system. Don’t just provide feedback once and assume your role is done. Keep track of the outcomes and ask for updates.

Building Alliances

Another vital strategy for making an impact in an ICS is building alliances. Networking with other carers, healthcare providers, and advocacy groups can amplify your voice.

Learn From Others

Engage with other carers and learn from their experiences. Information sharing can be incredibly powerful.

Caregiver Forums: Joining caregiver forums can be a great way to share information and strategies. These platforms often have tips on how to engage effectively with healthcare providers.
Collaborative Effort: Remember, you don’t have to do it all alone. Partnering with others in similar situations can be a massive force for change.

Continuous Learning

Attending meetings and reading through reports can seem daunting, but they offer a wealth of information. One thing noted about ICSs is the amount of reports. Those reports should be held to account regarding jargon, although being relistic, there is no quick escape from Jargon.

Stay Informed: Regularly check for any updates or meetings concerning your ICS.
Form Networks: Building a network of support can be incredibly beneficial. It not only alleviates the feeling of isolation but also helps in sharing the workload of participation.

The Importance of Carer Input

ICSs are designed to be collaborative, ensuring that health services are well-rounded and holistic. However, this is only possible if carers, who are often the hidden backbone of healthcare provision, speak up and engage.

Carers As a Link

Carers are the crucial link between the healthcare system and the person being cared for. Without their input, ICSs may second guess the needs of the community, leading to services that do not fully meet those needs.

Avoiding Isolation

One of the worst outcomes for any carer is isolation. Engaging with ICSs not only helps improve healthcare services but also connects carers with a supportive network of individuals who hopefully can understand their struggles.

The Bigger Picture

Beyond the immediate benefits, carer input helps create a more responsive and effective healthcare system. This leads to better outcomes for everyone involved, from the patients to the healthcare providers. Caring for someone should not always remain an isolating experience. As a carer use your experiences to ask for better support from the healthcare system.

In Summary

Integrated Care Systems represent a significant step towards more inclusive and comprehensive healthcare in the UK. They aim to mesh the various elements of health service provision into a coherent whole that genuinely meets the needs of the community. Carers have an indispensable role in making this vision a reality.

By engaging with local Healthwatch, providing persistent and specific feedback, advocating for transparency, building alliances, and staying continuously informed, carers can significantly influence the effectiveness of these healthcare systems. Remember, as a carer, your insights are invaluable.

So, don’t be silent. Speak up, engage, and help improve local health services today. Together, we can achieve more adaptive and efficient healthcare systems that better serve everyone.

Understanding the Patient Care Race Equality Framework: Challenging Mental Health Disparities

Welcome back from another blog post by matthew McKenzie. In today’s blog post, we’ll delve into a significant yet often overlooked initiative in the mental health sector—the Patient Care Race Equality (PCREF) Framework. Introduced by the NHS, the PCREF Framework is a pioneering approach to addressing racial inequalities in mental health services.

I have made a video (unfortunately not so short) drawing from my lived of a carer and activist. In the video I explored the core goals, benefits, challenges, and the broader implications of this framework. The video is coming from a carers pespective.

Understanding the PCREF Framework

What is the PCREF Framework?

Basically, the Patient Care Race Equality (PCREF) Framework, developed by NHS England, aims to address racial disparities within the mental health system. Data shows that racial minorities are disproportionately affected by inequalities in mental health care. The PCREF Framework seeks to improve access, experience, and outcomes for racialized communities, pushing for modernization of the mental health act and the elimination of institutional racism.

Things need to change

Mental health services have long been riddled with systemic biases and inequalities. The Mental Health Act of 1983, has aged and requires significant updates to reflect equity in care. The PCREF Framework is a part of broader efforts to reform the mental health act and address the institutional racism that has led to difficult experiences and outcomes for patients from racialized communities.

Goals of the PCREF Framework

The primary goal of the PCREF Framework is to reduce racial disparities in mental health care. This includes:

Improving Access: Ensuring that racialized communities have equitable access to mental health services.
Enhancing Experience: Improving the overall experience of patients from these communities within the healthcare system.
Better Outcomes: Aiming for equitable health outcomes by addressing systemic biases and inequalities.

Benefits of the PCREF Framework

Targeting Inequalities

The Framework is designed to specifically target racial inequalities in mental health outcomes. For instance, racialized communities often face higher rates of severe treatments such as restraint or use of strong medications that inhibit functionality without offering therapeutic benefits. By targeting these disparities, the PCREF Framework aims to provide more equitable forms of treatment.

Improving Experiences

Another significant benefit is the enhancement of patient experiences. Historically, racialized patients have reported poorer experiences within the mental health system. By acknowledging and addressing institutional biases, the Framework seeks to transform these experiences positively.

Promoting Institutional Reform

The PCREF Framework advocates for institutional reforms to dismantle systemic barriers faced by racialized communities. This includes educating mental health professionals on cultural competencies and biases, and promoting anti-racist and anti-oppressive practices.

Enhancing Community Involvement

One of the standout features of the PCREF Framework is its focus on involving patients and carers in the decision-making process. Engaging with the communities directly affected by mental health services ensures that their voices are heard and considered in policy development and implementation.

Challenges of the PCREF Framework

As addressed in the video, there are challenges, which are listed below.

Lack of Resources and Funding

One of the most significant challenges facing the PCREF Framework is the lack of resources and funding. The NHS is already stretched thin and requires substantial investment to ensure the long-term success of this initiative. Historically, previous racial equality initiatives have failed due to insufficient financial support, and there is a risk that the PCREF Framework could face the same fate.

Risk of PCREF Being Sidelined

The PCREF Framework requires a considerable amount of commitment and resources. There is a real risk that it could be sidelined if the requisite financial and human resources are not made available. The initiative demands a comprehensive approach involving medical professionals, community workers, and continuous community engagement.

Consistent Implementation

Inconsistent implementation across different regions is another significant challenge. The success of the PCREF Framework heavily depends on effective leadership and engagement at all levels. If some NHS Trusts are more committed than others, the disparities that the framework aims to address could inadvertently be exacerbated.

Cultural Shift within the NHS takes time

The cultural shift required to fully implement the PCREF Framework is considerable. Such a shift is often slow and can be met with resistance. While the framework provides a structure for reducing racial inequalities, changing long-standing biases and practices within the NHS will require time and sustained effort.

Staff Training

To effectively implement the PCREF Framework, staff need to be adequately trained in anti-racist practices (This training should involve patients and carers) . However, current constraints such as lack of time, staff, and resources can make this a daunting task. Without proper training, the framework risks being ineffective.

Risk of Becoming a Tick-Box Exercise

One of the most critical challenges is the risk of the framework becoming a mere “tick-box” exercise. If the framework is not implemented in the spirit it was intended, it could fail to bring about meaningful change. Robust monitoring and evaluation mechanisms are essential to ensure that the framework is genuinely making a difference.

Moving Forward: Steps to Take

Community Engagement

Continuous community engagement is crucial. Mental health trusts should run engagement events and stakeholder groups to reach out to marginalized communities, understand their concerns, and incorporate their feedback into service delivery.

Tracking Progress

Regular tracking of progress and measuring the impact of the framework is vital. This involves collecting and analyzing data to assess whether racial disparities are being truly reduced. Transparency in sharing this data will help build trust and ensure accountability.

Leadership

Strong leadership is fundamental to the success of the PCREF Framework. Leaders within mental health trusts must be committed to the initiative and work towards fostering a culture of inclusivity and equity.

Education and Training

Ongoing education and training for staff on cultural competencies and anti-racist practices will help in addressing biases and promoting equitable care. As a reminder this should involve patients and carers in training programs to provide real-world perspectives and insights.

Policy Development

Ensuring that the voices of marginalized communities are heard and represented in policy development is essential. Mental health organizations must prioritize inclusivity in their policy-making processes to reflect the diverse needs of the populations they serve. The problem is things can be rushed to meet targets.

Conclusion

As I have mentioned in my video, Patient Care Race Equality (PCREF) Framework represents a significant step forward in addressing racial inequalities within the mental health system. While the benefits of this initiative are substantial, the challenges it faces are equally significant. Overcoming these challenges requires a effort from all stakeholders involved, including mental health professionals, community leaders, patients, and carers.

By fostering a culture of inclusivity, investing in resources, engaging with communities, and continually tracking progress, the PCREF Framework has the potential to bring about meaningful and lasting change. It is an ongoing journey, but with sustained commitment and collaborative effort, we can build a more equitable mental health system for all.

AWP #LetsHearCarers – A celebration for unpaid mental health carers

Welcome back to another blog post from carer activist Matthew McKenzie. I am involved in quite a few things to raise awareness of unpaid mental health carers. One of them is Carers Trusts Triangle of Care Framework.

Triangle of Care is a framework developed to improve collaboration between mental health services, service users (patients), and carers. It was created by the Carers Trust in the UK, focusing on involving carers (family members or friends who support individuals with mental health issues) in care and treatment decisions, while ensuring they receive the support and recognition they need.

We have many mental health trusts who are members of the Triangle of Care. One of them is Avon and Wiltshire Mental Health Partnership NHS Trust or AWP for short.

Avon and Wiltshire Mental Health Partnership NHS Trust (AWP) is the lead provider of healthcare for people with serious mental illness, learning disabilities and autism across Bath and North East Somerset (BaNES), Swindon and Wiltshire, and Bristol, North Somerset and South Gloucestershire.

With support from Laura Sheridan who leads on carers at Cygnet. We both attended and supported the event at the mental health partnership trust. I took the time to explore the wonderful area of Bristol. Everyone I met was welcoming and friendly.

AWP have taken up the challenge to implement the Triangle of care and listen to carers. One of the best ways to listen to carers is through engagement and celebration events.

So on Thursday 3rd of October Avon and Wiltshire Mental Health Partnership NHS Trust (AWP) ran their #LetsHearCarers event. The event was held over at Somerdale Pavilion, Keynsham.

The day started off with a welcome from Sarah Jones, Director of Nursing and Quality at AWP.

We then got to hear from Ayesha Ahmed-Mendoza on the Black2Nature campaign to enable minorty ethnic children to have better access to nature camps. Next I was impressed with the presentation from Elaine Bennett regarding experiences of deaf carers.

Then we had the panel of carers giving their experiences of involvement at the NHS trust. I personally feel involvement of carers shaping services is a powerful way of allowing carers to have their say.

After the break, we got to hear from Debbie Hustings who is the new Triangle of Care lead for Carers Trust. Debbie used to be the former NHS England carers lead for London and has a wealth of experience when it comes to unpaid carers. Debbie presented on carers rights as she presented with her carers hat on. Next there was a comedy session from Angie Betcher who is a comedian at Bristol university, she is also skilled as a poet as well as a comedy performer.

Next was Lunch and workshops to cater for the wellbeing of carers who attended.

Have lunch I was up to read out 2 poems. One of the poems you can see from Avon and Wiltshire Mental Health Partnership NHS Trust’s video of the carer event below.

After more performances and networking with carers, I headed home. I would like to thank Avon and Whiltshire for the excellent event they put on for the community. Everything was planned brilliantly and I did not hear any grumbling from carers. I look forward to more events in future.

Top 10 ways to hold the NHS to account as a carer

When caring for someone, it is only a matter of time before you use the NHS. The National Health Service was set up to provide health no matter what your background. We all deserve the best healthcare provided for us.

Times have changed and feedback regarding the NHS is very important. This is especially important if you are an unpaid carer. You will have a different perspective when it comes to hold the NHS to account.

I have made a short video on ways to hold the NHS to account. It is not about always complaining, it is about helping to steer the NHS to include the carer’s voice.

We are all in this together although I do understand that there will be times you cannot feedback. The NHS is a massive complex set of systems, but we have a duty to be vocal because we deserve the best. Be that change and use your voice. As a carer it is your right.

Cancer Care – Left Behind

Welcome back to a quick blog from Matthew McKenzie – Carer activist. What is a carer activist you may ask? Basically, I campaign to raise awareness of unpaid carers caring for someone going through long term illness. The bonus is that I have lived experience of providing unpaid care and support to someone close with mental illness.

I also provided care and support to a dear old friend who I have known for many years. He suffered from cancer in the later stages of his life and when he passed away, I was left with a gift to raise awareness from writing books.

Just last week I came across a report on how UK cancer care ‘lags behind’ other countries.

Taken from the sky news report “The latest figures for NHS England show that some 76.3% of patients urgently referred for suspected cancer in June were diagnosed or had cancer ruled out within 28 days – above the target of 75%.”

You can read the report below.

https://news.sky.com/story/uk-cancer-care-lags-behind-other-countries-as-experts-highlight-ticking-time-bomb-13200322

As facilitator of the London Cancer carer forum, it is depressing news to hear the UK lagging behind. While the someone living with cancer is desperate for treatment, the family or close friend are also anxiously waiting.

It is important the Department of Health and Social Care reform their 10 year plan for the NHS and be inclusive with patient and carer voices.

Going back to my books. I have just published my first book on the experience of cancer caregiving. The book focuses on the following chapters.

Chapter 1: The experience of cancer caregiving
How carers may feel when they find out that someone close has been diagnosed with cancer

Chapter 2: The battle begins
What is expected of the cancer caregiver

Chapter 3: Battling for you
Avoiding being lost in the maze

Chapter 4: Getting involved through lived experience
Inspiring cancer caregivers to get involved in shaping health services

Chapter 5: Looking back
Not caring forever, so we eventually have to look back.

The book will be promoted slowly as you never know I probably will have to adapt or change a few things. You can get hold of the book on Amazon.

August Monthly Carer & Health News Updates 2024

Here is the latest carer and mental health news for the month of August 2024 by carer activist and author Matthew McKenzie.

SIGN UP TO NEWS SITE HERE

August 2024 Carer and Mental Health news <- Read more news items here.

For the August edition on unpaid caring and mental health we have the following news items.

Carer Videos

Triangle of care news

Triangle of care newsletter – June 2024

New Audiobook release – The Poetry book of Mental Health caring

This special edition includes poems from unpaid carers across the country. View more details of the audibook in the link below

The Poetry book of mental health caring: Special Edition

Latest Carer news items

Ethnic carer and minority news updates

March Monthly Carer & Health News Updates 2024

Here is the latest carer and mental health news for March 2024 by carer activist and author Matthew McKenzie.

March 2024 Carer and Mental Health news <- Read more news items here.

For the March edition on unpaid caring and mental health we have the following news items.

Carer Videos

Latest Carer News

Carer Research Papers

AHPs news updates

Cancer Awareness updates

Ethnic carer and minority news updates