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.

Unpaid Carers’ Human Rights Protection: Understanding and Advocating

Welcome to another blog post from Carer Activist Matthew McKenzie. For this blog post, I will be focusing on unpaid carers and human rights. For a more indepth (Over Half an Hour) view of human rights and the relation to unpaid carers, please look at my video below.

Understanding Human Rights for Unpaid Carers

Introduction

Unpaid carers play an indispensable role, often devoting a significant part of their lives to caring for family members or friends facing long-term illnesses. Despite the crucial service they provide, their rights aren’t always explicitly recognized or protected within legislative frameworks. However, the Human Rights Act 1998, which incorporates the European Convention on Human Rights (ECHR) into UK law, can be a powerful tool for unpaid carers to advocate for their rights and well-being.

This article delves into how various articles of the Human Rights Act apply to unpaid carers, providing an essential guide for those seeking to understand and exercise their rights better. Let’s explore these aspects in detail.

What Are Human Rights?

Human rights are the fundamental rights and freedoms that belong to every person in the world from birth until death. In my video, I cover the following rights. Below these rights include:

Protection from inhuman or degrading treatment (Article 3)
Right to life (Article 2)
Freedom from discrimination (Article 14)
Right to a fair trial (Article 6)
Right to freedom of expression (Article 10)
Right to education (Protocol 1, Article 2)
Right to protection of property (Protocol 1, Article 1)

While unpaid carers aren’t explicitly mentioned in the Human Rights Act, these rights are highly pertinent to their roles and responsibilities.

Right to Private Life and Family Life (Article 8)

Ensuring Respect for Family Life

Unpaid carers often provide necessary and vital support within the family setting. The right to respect for private and family life is critical to ensure that carers and those they care for can maintain personal relationships without undue interference from public authorities.

For instance, the local authority may be required to provide home adaptations for disabled individuals to ensure that their family life isn’t impeded. Removing or denying necessary adaptations can be a violation of this right.

Balancing Care and Personal Life

Carers have the right to support that allows them to balance their caregiving responsibilities with their own personal privacy and well-being. Local authorities have a duty to assess carers’ needs and provide adequate support. If a carer isn’t receiving the necessary support, this can significantly infringe on their right to private and family life.

Protection from Inhuman or Degrading Treatment (Article 3)

Physical and Emotional Exhaustion

Unpaid carers frequently face physical or emotional exhaustion due to the demanding nature of their responsibilities. If the situation becomes overwhelming and because of a lack of respite care, leads to extreme stress or exhaustion, this can be considered degrading treatment.

Adequate Support and Living Conditions

If the person being cared for is left in conditions deemed inhuman or degrading due to inadequate support, this can also be a breach of their human rights. Therefore, obtaining proper assessments and resources is crucial to preventing these situations.

Right to Life (Article 2)

Duty to Protect Life

Public authorities have a responsibility to protect the lives of individuals. For unpaid carers, this includes ensuring that their health and safety are not compromised due to a lack of support. If a carer or the person they care for is at risk because they’re not receiving the necessary care, local authorities must intervene to protect their rights.

Health Risks and Burnout

Significant health risks, such as mental or physical exhaustion due to inadequate support, fall under this right. Formal assessments and interventions are necessary to safeguard carers’ well-being.

Freedom from Discrimination (Article 14)

Equal Access to Services

Unpaid carers must not face discrimination in accessing services, financial support, or resources based on their caregiving role. This includes situations such as:

Healthcare services denying entry or access due to the visible disability of the person being cared for.
Employment practices that refuse to provide flexible working arrangements to accommodate caregiving responsibilities.

Indirect Discrimination

Carers may also experience indirect discrimination, such as when they are unable to access services due to their caregiving duties. Employers and service providers have an obligation to ensure fair treatment and not disadvantage carers due to their responsibilities.

Right to a Fair Trial (Article 6)

Challenging Unfair Decisions

Carers often need to challenge decisions made by local authorities or healthcare providers, such as the denial of a carer’s assessment or the withdrawal of support services. Carers have the legal right to contest such decisions under Article 6, ensuring they are given fair hearings and access to justice.

Right to Freedom of Expression (Article 10)

Advocating for Rights

Unpaid carers have the right to express concerns or complaints about the level of support or treatment they, or the person they care for, receive. This includes the ability to challenge decisions without fear of retribution from local authorities or service providers.

Raising Awareness and Campaigning

Carers can also campaign for better resources and highlight issues within social care. Engaging in advocacy can lead to significant improvements within the system, benefiting not only individual carers but the broader community.

Right to Education (Protocol 1, Article 2)

Supporting Young Carers

Educational opportunities must not be denied to young carers due to their caregiving responsibilities. The state has a duty to ensure these young individuals are supported so they can access education fully. This is increasingly recognized as a significant issue, with advocacy organizations working to secure the rights of young carers.

Inclusive Educational Policies

This right also applies to adult carers who may face educational barriers. Ensuring inclusive and supportive educational policies helps in protecting their rights.

Right to Protection of Property (Protocol 1, Article 1)

Access to Financial Resources

The right to protection of property includes the entitlement to financial support and benefits necessary to maintain the well-being of both the carer and the person cared for. Denial of such financial support without due process can be contested under this right.

Safeguarding Property and Assets

This right also covers safeguarding the property and assets of the cared-for person, ensuring they aren’t compromised by poor financial management or exploitation.

Conclusion

Understanding and asserting human rights is vital for unpaid carers. Despite not being explicitly mentioned in the Human Rights Act, unpaid carers can leverage existing legal protections to advocate for their rights and those of the individuals they care for. Knowing these rights enables carers to push back against systemic issues and seek better support and resources.

For further advice or to challenge potential human rights violations, carers should seek legal assistance and ensure that their concerns are formally recorded and addressed.

The journey towards recognizing and protecting the rights of unpaid carers continues, and awareness is a crucial step forward.

Cygnet ambassadors day out & Cygnet Annual Social Work Awards 2024

Welcome back to another blog post from Carer activist, author and Cygnet Carer Ambassador Matthew Mckenzie.

Over the years I have been working hard to promote and engage with unpaid carers at Cygnet along with the other Cygnet Carer Ambassador Leslie, Julian and Christine. It was due time to have a relaxing break or at least a stroll around London. With Cygnet carer Lead Laura Sheridan helping to record the day, our group explored around the city

We were on our way to Cygnet’s Annual Social Work Awards 2024 hosted over at Cygnet Churchill hospital over in Lambeth.

This was going to be an excellent and inspiring event, but before we attended, we aimed to take some photos and continue to explore London.

It was not long before we arrived at Churchhill Lambeth hospital. The staff welcomed us as we talked to the social workers up for awards and we also chatted to lord Kamlesh Patel OBE about the importance of unpaid carers.

As the awards got underway, I noticed a good line of speakers who presented the about the importance of Social work and specific campaigns. This included Lord Kamlesh Patel who opened the award ceremony. The set up for the event was hybrid with online and onsite attendees from across different cygnet hospitals.

We also heard from Cygnet Deputy Director of nursing Jo-Ann McAuliffe. Next to speak was Cygnet strategic lead for mental health & prisons Christina Cheney. Christina spoke about the state of the nation when it comes to mental health and social work.

We then heard from Paula Tappenden who is Cygnets Head of Social Work and Safeguarding. Paula spoke about the Blue Dragon Children’s Foundation and her mission to make a difference in ending human trafficking and how Cygnet Social workers could support.

After Lunch and socialising. We got to view the Cygnet Social Work Award ceremony for the following categories

Social Work Assistant of the Year
Social Worker of the year
Leadership in Social work

Well done for all who were nominated and also the winners. All who took part set an example to social workers at the organisation.

After the award ceremony I spoke as a Cygnet Carer network ambassador on the importance of engaging with carers especially using the “Triangle of Care” method and empowerment of lived experience

We had lots of audience engagement, plus support from my fellow Cygnet Carer ambassadors giving their view of carer acknowledgement and empowerment.

Up next to speak was Chloe Cooper-Brown who is Cygnet’s Head of Social Work and Safeguarding Lead on sharing the Risk with discharges and joint working with the Police. Last to speak before our group headed off was hearing from Euan Atkinson who presented on his lived experience at Cygnet.

Socialising day out

Our group of Cygnet carer network ambassadors continued to have a day out as we headed to Waterloo and examined some street art and talked relax at some cafes at Waterloo.

It is important that Cygnet not only help heal the community, but empower the community as we spoke to carer activist Ionie on how Cygnet can help carers continue their networking and reach more carers in the community. I will look forward to interviewing Ionie off my carer activist video series later on.

Unpaid Carers: Top 10 Ways to Seek Support from Your Doctor

Welcome to another carer awareness and educational blog post from carer activist Matthew McKenzie. If you want to see more a more detailed version of this topic, watch the video below.

Introduction

Caring for a loved one is both a noble and demanding task. Unpaid carers often find themselves juggling numerous responsibilities, and it can be easy to neglect their own well-being. One crucial source of support for unpaid carers can be their General Practitioner (GP). The purpose of this article is to highlight the top 10 ways unpaid carers can get support from their doctor, ensuring they maintain both their physical and mental health.

Why Unpaid Carers Need Support from Their GP

Raising Awareness of Health Concerns

When caring for someone with a long-term illness, whether mental or physical, the health of the loved one can decline over time. It is crucial for unpaid carers to raise awareness with their GP about these changes to ensure that the necessary support is provided and that it is documented in the patient notes.

Avoiding Carer Burnout

Carers often prioritize the needs of their loved ones over their own, leading to potential mental and physical burnout. Regular checkups with your GP can help monitor your health and prevent burnout. It’s vital that carers take care of themselves in order to continue providing the best care.

Access to Resources

GP practices can provide or refer carers to various resources, but it’s important to note that not all GP practices offer the same services. These resources can range from support groups to secondary care services for the loved one.

Regular Health Checkups

Importance of Regular Checkups

An important reason for carers to visit their GP is to get regular health checkups. These checkups are particularly important as carers age, helping to monitor and maintain their overall health.

Overcoming Appointment Difficulties

While it can be challenging to secure GP appointments, especially if you are busy or if the practice is crowded, it is essential not to neglect your own health. Make the effort to prioritize these appointments for your well-being.

Access to Community Resources

Social Prescribing

Social prescribing is an important resource for carers. Instead of relying solely on medications, GPs can refer carers to community groups or local care centers. This alternative approach can address issues like sleep problems, low mood, and overall well-being.

Support Groups and Programs

Local support groups and respite carer programs can provide significant relief and encouragement for carers. Always register at your local carer centre for carer support groups. Plus make use of talking therapies and other supportive measures.

Medication Management

Understanding Medication for Your Loved One

Managing medication for a loved one can be complex, especially when multiple medications are involved. GPs can assist carers in understanding how to administer these medications, recognize side effects, and manage any changes in prescriptions. This support is crucial to avoid risking the health of the person being cared for.

Financial and Legal Support

Navigating Financial Aid

For carers dealing with mental ill health or other serious conditions, financial and legal support can be necessary. Some GP practices can refer you to services like the Citizens Advice Bureau, which can help navigate these challenges.

Emergency Plans

Establishing an Emergency Plan

Having an emergency plan in place with your GP is vital, especially when caring for someone with severe health issues. This plan should outline steps to take if something goes wrong and include contacts for medical teams and emergency situations. The upcoming Universal Care Plan, expected to expand by 2024, will offer an online system for carers to manage these details effectively.

Healthy Lifestyle Choices

Encouraging a Healthy Lifestyle

GPs can provide guidance on maintaining a healthy lifestyle, which is crucial for both the carer and the person being cared for. This includes advice on diet, exercise, stress management, and overall well-being. Such recommendations can come from regular checkups or specific health assessments.

Developing Care Plans

Collaborative Care Planning

Gaining the cooperation of the person you’re caring for and collaborating with your GP to develop a comprehensive care plan can reduce stress and anxiety. Double appointments can be booked to address both your needs and those of the person you’re caring for.

Training and Education

Workshops and Training

GP practices may offer workshops and training programs for carers, often funded by the NHS. These sessions can cover various topics, from handling falls to managing specific illnesses. Proper training equips carers with the necessary skills to provide effective care.

Knowing Your GP Practice

Engaging with Your GP Team

Not all GPs are equally knowledgeable about the needs of carers. An informed GP who understands your role can significantly impact the support you receive. Carers should not hesitate to choose or change GPs to ensure they are getting the necessary support.

Utilizing Practice Resources

Beyond the GP, the practice team may include specific advisors such as mental health nurses or specialists in diabetes and physical health. Engage with the reception to understand what extra services are available, ensuring you leverage the full spectrum of support.

Planning Ahead for Emergency Situations

Emergencies can arise unexpectedly, and having a well-thought-out plan in place is crucial. Collaborate with your GP and relevant professionals to outline an emergency strategy. This proactive approach ensures that both you and your loved one are prepared for unforeseen circumstances.

Conclusion

The role of an unpaid carer is both challenging and vital. Engaging with your GP not only helps ensure the well-being of the person you’re caring for but also safeguards your own health. By taking advantage of regular checkups, accessing available resources, managing medications effectively, and planning for emergencies, carers can navigate their demanding roles with better support and peace of mind. Always remember, taking care of yourself is just as important as taking care of your loved one.

OCD Awareness Week 2024: Breaking the Stigma

Welcome back to another mental health awareness blog post from carer activist Matthew McKenzie. As of the posting of this blog. It is OCD Awareness Week 2024. You can also watch my video of the awareness week below.

What is OCD?

Obsessive-Compulsive Disorder (OCD) is a mental health condition that affects millions of people worldwide. It involves unwanted, intrusive thoughts known as obsessions and repetitive behaviors or mental acts called compulsions. These behaviors are not just quirky habits but are driven by a deep need to alleviate the anxiety caused by these intrusive thoughts.

Understanding the Obsessions

Obsessions are more than just everyday worries or concerns. They are persistent and unwanted thoughts, images, or urges that cause significant anxiety or distress. People with OCD are often fully aware that these thoughts are irrational, but they find it extremely difficult to ignore or suppress them.

The Nature of Compulsions

Compulsions are repetitive behaviors or mental acts that a person with OCD feels driven to perform. These actions are attempts to reduce the distress caused by obsessions or to prevent a feared event or situation. Compulsions can take many forms, including excessive hand-washing, checking, counting, or repeating words silently. Importantly, these behaviors usually provide only temporary relief and can be very time-consuming, interfering significantly with daily life.

Busting Myths About OCD

It’s Not Just About Tidiness

One of the most common misconceptions is that OCD is merely about being neat and organized. While some people with OCD may have cleanliness-related compulsions, the disorder is much more complex. It can involve a wide range of obsessions and compulsions, many of which have nothing to do with order or cleanliness.

Beyond Quirks and Idiosyncrasies

OCD is often trivialized in popular culture as just a set of quirky behaviors. In reality, it is a serious condition that can cause significant distress and impairment in various areas of life, including personal relationships, work, and overall well-being.

The Role of OCD Awareness Week 2024

Organized by International OCD Foundation

This year’s OCD Awareness Week, running from October 13th to the 19th, is being spearheaded by the International OCD Foundation and other reputable organizations. The main goal is to spread awareness, break down stigma, and provide actionable support for those living with OCD.

Activities and Resources

The week will feature various workshops, webinars, and support groups designed to educate the public and those affected by OCD. Educational materials and personal stories will also flood social media, providing a wealth of knowledge and resources. Keep an eye on hashtags like #OCDWeek to stay updated on these activities.

How You Can Help

Educate Yourself

If are caring for someone with OCD, taking the time to educate yourself about their condition can be a game-changer. Understanding their symptoms, knowing their triggers, and familiarizing yourself with treatment options can make you a better support system for them.

Combat Stigmatization

One of the critical goals of OCD Awareness Week is addressing common misconceptions and combating stereotypes. Recognize that OCD is not something to be joked about—it is a serious condition that requires empathy and understanding.

Effective Treatment Options

Cognitive Behavioral Therapy (CBT)

Cognitive Behavioral Therapy (CBT) is one of the most effective treatments for OCD. This type of therapy involves techniques to help individuals manage their obsessions and reduce compulsive behaviors. One specialized form of CBT, called Exposure and Response Prevention (ERP), is particularly effective for treating OCD.

Medication

Medicinal interventions, particularly selective serotonin reuptake inhibitors (SSRIs), can also be very effective in managing OCD symptoms. It’s essential to consult a healthcare professional to determine the best treatment plan for each individual.

Seeking Professional Help

It’s crucial to know that help is available and that it’s okay to seek it. Professional treatment can make a significant difference in managing OCD symptoms and improving quality of life.

Building a Supportive Community

The Power of Empathy

One of the most impactful ways to support those living with OCD is through empathy and understanding. Small acts of kindness, like listening without judgment or offering a helping hand, can go a long way in making someone feel less isolated in their struggle.

Family and Friends

Families and friends play a crucial role in the support system for someone with OCD. By educating themselves about the disorder, they can offer better support and reduce the feelings of isolation and stigma that often accompany mental health conditions.

Get Involved

Spread the Word

Sharing knowledge is one of the simplest yet most effective ways to raise awareness. Use social media, community events, and even casual conversations to spread accurate information about OCD. Participate in events and activities during OCD Awareness Week to show your support.

Promote Compassion

By promoting empathy and understanding, we can create a more compassionate world for those affected by OCD. Every small effort counts, from sharing a post on social media to participating in a local awareness event.

Making a Difference

Raising awareness about OCD is not just about understanding the condition but also about fostering a supportive environment for those affected. By debunking myths, spreading correct information, and showing empathy, we can make a transformative impact in the lives of millions of people living with OCD.

Thank you for taking the time to learn about OCD and how you can contribute to raising awareness. Let’s make this world a little more compassionate and understanding, one step at a time.

Building Resilience as an Unpaid Carer: Essential Tips for Coping in your caring role

Welcome back to another blog post from carer activist Matthew McKenzie. This time I am going to talk about building resilience as a carer. To watch the indepth video of the topic. Please click below. The video is split timestamps, so you can skip to a section.

Understanding Resilience in Unpaid Caregiving

Caring for a loved one, friend, or neighbor with a long-term illness can be an incredibly rewarding experience. It allows you to form deep emotional bonds and fulfill a duty of love and support. However, this role also comes with its own set of challenges which can be emotionally, mentally, and physically draining. Building resilience is crucial for unpaid caregivers to successfully navigate these challenges and continue providing the best care possible.

What is Resilience?

Resilience is the ability to bounce back from hard times and adapt to challenging situations. It is about finding ways to cope with difficult circumstances without being worn down by them. For unpaid caregivers, resilience is essential to remain effective in their roles and take care of their own well-being.

Why is Resilience Needed?

Unpaid caregivers often face emotional strain, unpredictability, social isolation, and problem-solving challenges. Let’s look at why resilience is necessary to combat these issues:

Emotional Strain

Caregiving can lead to emotional strain, especially when things don’t go as planned. The person being cared for might face a downturn in their health, causing feelings of depression, anger, or anxiety in the caregiver. Emotional resilience helps caregivers manage these sentiments and prevents burnout.

Unpredictability

Caring for someone with a long-term illness can be unpredictable. Health conditions can change rapidly, and unexpected challenges can arise at any moment. Resilience equips caregivers with the ability to adapt to these changes without being overwhelmed.

Social Isolation

Unpaid caregiving can lead to social isolation because the role often requires long hours and constant vigilance. This isolation can be detrimental to the caregiver’s mental health. Building resilience can help mitigate the effects of isolation and keep caregivers more engaged with their social circles.

Problem-Solving

Unpaid caregivers often need to be excellent problem-solvers. They must find solutions to daily challenges, sometimes under pressure. Resilience enhances problem-solving skills, allowing caregivers to face hurdles more effectively.

Steps to Building Resilience

Building resilience involves developing various skills and adopting certain practices. Here are steps that can help unpaid caregivers build resilience:

Develop Problem-Solving Skills

Planning ahead is crucial. While it’s impossible to foresee every challenge, preparing for potential issues can reduce the stress of facing them. Different caregivers may find different problem-solving strategies more effective, so it’s essential to find what works best for you.

Educate Yourself

Knowledge is power. Understanding the illness you’re dealing with can make caregiving more manageable. Resources like online sites, charities, and support organizations can provide valuable insights. For example, National carer charities like Carers UK and Carers Trust offer extensive information on unpaid caregiving and specific illnesses.

Celebrate Small Wins

Recognize and celebrate small victories. Did you manage to pick up medication successfully? Did your loved one start talking to you more openly? These small wins can boost your morale and strengthen your resilience. Make it a routine to acknowledge and be thankful for these moments.

Join Support Groups or Networks

Participating in support groups or caregiver networks can provide emotional support and practical advice. You don’t always have to share your problems; sometimes, simply listening and learning from others’ experiences can be incredibly beneficial. Building a network of caregivers can also help reduce social isolation.

Establish Boundaries

Setting boundaries is essential for maintaining your own well-being. Know when to step back and take time for self-care. It’s crucial not to overextend yourself to the point of exhaustion.

Practice Mindfulness

Mindfulness practices, such as deep breathing exercises, walking, or journaling, can help reduce stress and improve mental clarity. These activities can make challenges more manageable by promoting a positive mindset.

Stay Connected

Maintaining connections with friends and family can provide emotional support. While not all family dynamics are the same, having someone to talk to can help combat feelings of isolation. Building resilience sometimes involves depending on others, which can be tricky but rewarding.

Prioritize Self-Care

Taking care of yourself is fundamentally linked to being able to take care of others. This includes eating well, exercising, journaling, and taking breaks when needed. Self-care is a vital part of building resilience and should not be overlooked.

Conclusion

Building resilience is not a one-time task but an ongoing process that requires consistent effort. The rewards, however, are substantial. Resilient caregivers are better equipped to handle the challenges of their role, provide high-quality care, and maintain their own well-being.

Unpaid caregiving is both a demanding and fulfilling role. By building resilience, caregivers can ensure they are prepared to meet the challenges they face, reduce emotional and physical strain, and continue to provide compassionate, effective care.

Remember, it’s essential to educate yourself continually, celebrate your achievements, and take care of your well-being. The more resilient you are, the more capable you’ll be in your caregiving role.

On Caring – Carer awareness poem by Matthew McKenzie

Welcome back to another blog post by Carer activist, poet and author Matthew McKenzie. As you can guess by most of my post off this site, I raise awareness of those providing unpaid care to someone.

Even though I have written a few books containing poems about the caring role. There will be times I will just come out with the odd poem due to spark of creativitiy. Here is my latest poem to raise awareness of caring for someone living with long term illness. I hope you like it, but if you dont then I hope it provides plenty of discussion.

I am always interested in what people think of my new poem. I am sure to place these poems in another book at a later date. Feel free to comment either in the video or my YouTube channel.

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.

Black Dialogue for Black carers

Welcome back to another blog post from carer activist Matthew McKenzie. Are you a carer from African carribean background living in Southwark?

There is a new project from the Southwark Wellbeing Hub that uses group therapy. Its aim is for Black Carers to share a supportive space to discuss and manage the challenges they face.

Please check out the poster below for more information.

To book you can use the link