Category Archives: Aimed at Carers

Blog posts aimed at non paid carers caring for someone unwell.

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.

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

The Power of Networking for Caregivers: Enhancing Support and Resilience

The Power of Networking for Unpaid Carers

Welcome to another blog post off my carer and mental health website.

Caring for a loved one is a profoundly rewarding experience, but it can also be an incredibly challenging journey. The role often comes with feelings of isolation and overwhelming responsibility.

Fortunately, networking with fellow caregivers can make a significant difference in the lives of unpaid carers. Connectivity fosters emotional support, practical advice, resource sharing, community building, resilience, and even advocacy. In this article, we’ll explore the importance of networking for unpaid carers and how it can enrich their caregiving journey.

Video Version

To watch a brief video of the blog please view the video below

Emotional Support: You Are Not Alone

One of the most significant benefits of networking is emotional support. Caring for a loved one can often feel isolating, and the weight of responsibilities can be heavy. Connecting with other caregivers who truly understand your experiences can lighten this emotional load. Sharing your stories, challenges, and triumphs with those who “get it” provides comfort and a sense of belonging. Knowing you are not alone in this journey can significantly improve mental health and resilience.

Access to Practical Advice

Networking allows carers to exchange invaluable tips and strategies. Each caregiving situation is unique, but many challenges are universal. Experienced carers can offer practical advice on managing specific conditions, navigating healthcare systems, or handling day-to-day tasks. This shared knowledge acts as a collective wisdom pool, making the caregiving process more manageable for everyone involved.

Resource Sharing

In addition to practical advice, networking facilitates the sharing of resources. Information about local services, support groups, and community resources can be invaluable. Imagine having a treasure map that leads you to various forms of support tailored for carers—this is what resource sharing can achieve. These exchanges can lead to discovering programs, grants, respite care options, and other services that ease the caregiving burden.

Community Building

Establishing connections with other caregivers fosters a sense of community and belonging. In many ways, caregiving can be a lonely journey, but community building changes this narrative. Community groups provide a space where carers can interact and engage in meaningful conversations. For example, caregiver groups run locally can offer a support system where members can share experiences, support each other, and even socialize. Such communities act as pillars of strength for carers, reinforcing that they are part of a larger, caring network.

Enhancing Resilience Through Shared Strategies

Resilience is a necessary trait for carers. The demands of caregiving require constant adaptation and emotional strength. By networking, carers can learn effective coping strategies from one another. These shared strategies can empower carers, building their resilience and enhancing their ability to provide care. Learning from others’ experiences offers new insights and techniques, reinforcing the carer’s own skills and capacities.

Boosting Advocacy and Awareness

When caregivers come together, their collective voice becomes stronger. Networking can boost advocacy and awareness of the issues that matter most to carers. Advocacy can lead to policy changes, more resources, and greater recognition of the challenges faced by carers. Whether it’s campaigning for more support services or raising awareness about the realities of caregiving, a united front can make a substantial impact.

Amplifying Voices

Together, caregivers can amplify their voices to influence change. Advocacy efforts become more effective when carers unite. These collective efforts can bring about policy changes, increased funding for caregiving resources, and greater public awareness of the importance of supporting unpaid carers. By networking and working together, carers can drive systemic changes that benefit the entire caregiving community.

Tips for Building a Caregiving Network

Join or Form Caregiver Support Groups

Consider joining or forming caregiver support groups in your local community or online. These groups create a space for regular interactions, exchanges of advice, and mutual support. You might want to check out the carer forums I run off my website.

Attend Workshops and Conferences

Workshops, seminars, and conferences are excellent opportunities to meet other carers and professionals in the field. These events often provide both educational content and networking opportunities.

Utilize Social Media

Social media platforms can also serve as networking tools. Joining caregiver groups on platforms like Facebook or participating in Twitter chats can connect you with a broad community of caregivers worldwide.

Engage with Local Nonprofits and Organizations

Local nonprofits and organizations often have resources and networks specifically designed for carers. Engage with these entities to tap into their resources and support networks.

Leverage Online Forums

Online forums and communities, such as Reddit or specialized caregiving forums, allow for the exchange of advice, experiences, and support. These platforms can be especially beneficial for those who may not have access to local groups. I even utilise Whatsapp to provide a network for carers to connect.

Reach Out to Healthcare Providers

Healthcare providers often have connections to support groups and resources for carers. Don’t hesitate to ask your loved one’s doctor or nurse for referrals to local or online caregiver networks.

Create Personal Connection Lists

Keep a list of contacts that you can reach out to for different types of support. This can include other carers, healthcare professionals, and service providers. A well-maintained list can be a quick reference for resources and advice when needed.

Conclusion

Networking for unpaid carers is more than just a beneficial activity—it’s a necessary lifeline. Emotional support, practical advice, resource sharing, community building, resilience, and advocacy are some of the many advantages that come from connecting with fellow carers. By fostering these connections, carers can significantly enrich their caregiving experience and improve their well-being and the quality of care they provide. Remember, you are not alone in this journey. Reach out, connect, and together, we can create a supportive and empowered caregiving community. Take care!

Important Signs that It’s Time to Ask for Help as a Caregiver

Welcome to another blog post on carer / caregiver awareness from carer activist Matthew McKenzie. To see the video of this blog post, watch below.

Recognizing the Need for Help as a Caregiver: 10 Signs to Watch Out For

Caring for a loved one is often a rewarding experience filled with deep connection and personal satisfaction. However, it can also become overwhelming, exhausting, and challenging. Acknowledging that you need help is a crucial step in providing the best care for both your loved one and yourself. Here, we’ll explore 10 important signs that indicate it may be time to ask for help in your caregiving role.

Feeling Overwhelmed with Your Caring Role

Caregiving involves juggling numerous responsibilities, which can lead to constant stress and anxiety. If you often feel like you’re unable to cope, it’s a clear indication that you need support. Feeling overwhelmed is not a sign of weakness; it’s a human response to a heavy load. Remember, it’s perfectly okay to ask for help and share the burden.

Physical Exhaustion

The physical demands of caregiving can be immense. Lifting, moving, and assisting your loved one can take a toll on your body. If you find yourself frequently fatigued, or if you experience chronic pain or other health issues, it’s important to seek help. Ignoring these symptoms can lead to caregiver burnout, which ultimately benefits no one.

Emotional Strain

Caregiving can also be emotionally taxing. Signs of depression, irritability, or frequent mood swings may indicate that you need emotional support. Friends, family, or professional counselors can provide the necessary outlet for your feelings and help you manage the emotional strain that comes with caregiving.

Changes in Your Loved One’s Needs

Your loved one’s condition may worsen over time, increasing their care needs. When this happens, don’t hesitate to ask for assistance. Professional help can be crucial during periods of significant change, ensuring your loved one receives the best care possible while you adapt to new demands.

Neglecting Personal Needs

It can be easy to lose sight of your own health, relationships, and hobbies when you’re focused on caregiving. However, neglecting your personal needs can lead to serious health and emotional issues. Seeking help can give you the space to take care of yourself, restoring balance and allowing you to be a stronger caregiver.

Isolation

Feeling lonely or disconnected is a common experience among caregivers. This isolation can exacerbate stress and make the caregiving role even more challenging. Reaching out for support, whether from family, friends, or caregiver support groups, can help you reconnect and remind you that you’re not alone in this journey.

Crisis Situations

In times of emergency or when faced with making tough decisions about your loved one’s care, seeking help is essential. Attempting to navigate these moments alone can be risky. Professional advice and support can provide the guidance you need to make the best possible decisions during a crisis.

Lack of Knowledge or Skills

Caregiving often involves tasks that require specific knowledge or skills, such as medical care or managing medications. If you encounter tasks you’re unsure how to handle, it’s crucial to seek guidance. Professional help can ensure that these tasks are performed correctly, safeguarding your loved one’s health.

Inability to Maintain Routine

Maintaining a consistent daily routine is vital for both you and your loved one. If you find that daily routines are regularly disrupted and you’re struggling to manage time, consider asking for assistance. A little help can go a long way in restoring structure and reducing stress.

Need for Respite

Everyone needs a break occasionally. If you feel the need to take time for self-care or to recharge, don’t hesitate to ask for help. Whether this comes from family, friends, or respite care services, taking the time to rest is essential for maintaining your well-being and being an effective caregiver.

Conclusion: Seeking Help is a Sign of Strength

Recognizing and acting on these signs doesn’t mean you’re failing as a caregiver; it means you’re taking necessary steps to ensure the best care for your loved one and yourself. Asking for help is an act of strength and responsibility. Take the initiative today to reach out and seek the support you need in your caregiving journey.

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.

Top 10 signs you should seek help if caring for someone

Welcome back to another carer awareness blog from carer activist Matthew McKenzie. Now we all want to be there for someone who is going through long term or sudden ill health.

We do not want to fail our loved ones, but there are some illnesses that put a lot of pressure on the caring role.

Here are some examples

Feeling Overwhelmed with your caring role.
Physical Exhaustion
Emotional Strain
Changes in Your Relative’s Needs

It is not the fault of the carer or cared for, but it is important caregivers know the signs in order to ask for help.

Below I have made a short video that shows 10 signs that its time to ask for help as an unpaid or informal carer.

Caring for someone close to us, should be one of the most cherished experiences of our lives. It is important that the pressure of the caring role does not cause us to walk away.

What are carers rights?

Another carer awareness and carers rights blog post from Matthew McKenzie. When caring for someone with long term illness. It is very important to be aware of your carers rights.

We all have them, but unfortunately most of us are not aware and might not be told about those rights. We are too busy worrying about the health of our loved one or close relative.

As of 2024 21st of november. It will be Carers Rights day and although I will do my best to raise awareness of this important day for carers and organisations that support carers. I thought to make a blog and video now.

It is all too easy to fall into the role of unpaid caregiver and not reach out for any support. This is important to recognise. As carers, we also need some support in our caring role.

Remember to feedback on my video and good luck recognising your carers rights.

Identifying yourself as a cancer caregiver

Welcome back to another blog poster from Matthew McKenzie, carer activist and a member of the Macmillan Cancer Community Network. I chair the National Cancer carer forum aimed at those caring for someone living with cancer.

if you struggle with caring for someone with cancer. As carers, we never want to see our loved ones struggle. But caring for someone with cancer can be incredibly frightening. It’s hard to be strong for them if you’re struggling too. That’s why it’s so important to identify yourself as a carer.

Feel free to watch the short carer awareness video I made below.

By registering at your doctor’s surgery, a carer centre, or a Macmillan Cancer Support group, you can access the support you need. Get the help you deserve. Remember, you’re not alone in this. By identifying yourself as a carer, you’re opening the door to resources, advice, and a community that understands what you’re going through.

You can also register for my online group, that runs the last Wednesday of the month.

Click this link to book for the group

Take that step today. For yourself, and for your loved one. You’re doing an amazing role. Get yourself supported every step of the way.

Quotes to cope with sadness and grief

Welcome to my site raising awareness of those who care for someone with long term illness.

Caring for someone going through either mental health conditions or cancer can be a special role, but also challenging. Caring for someone close or a close friend can be an emotional rollarcoster. As carers there are times when we just cannot be in command of our own emotions.

Due to these challenges, you will experience decline in the person’s mental and physical health. This is distressing to experience and deal with. Every so often I release videos to help those focus on combating these difficult emotions. Even if for a short while.

Feel free to watch my video below.

If you are caring for someone. Remember to look after yourself.

Coping skills for carers and caregivers

Welcome to another carer awareness blog post from carer activist Matthew McKenzie. Today I want to raise awareness that carers should not always helpless and vulnerable. It is true that there are many things a carer cannot control, but that does not mean we should remain helpless.

There are coping strategies carers should try. It might seem like a cheap way to solve difficult and challenging issues, but the risk is mental and physical decline if you do not arm yourself with coping strategies. This is particularly important if you are caring for someone with challenging health issues.

There are ways carers can support themselves by developing problem solving skills in tackling isolation, negative thoughts and falling into bad coping habits.

First and foremost, it is critical that we admit that we are caring for someone. Once you get past that hurdle, you need to be aware of when you struggle with moods. There is no easy solution, as developing coping methods take time and energy. It helps to understand mindfulness and write about your feelings.

Understand what triggers you and work out a way to reduce those triggers. Getting angry about everything is a reaction and we need to protect our mental health. We cannot keep reacting to things, even if certain things are outside our control. This is especially when it comes to the health of the person we are caring for.

It is important to also set time aside to care for yourself. It might be exercsing by going for a quick walk or having to set boundaries. Some people wear themselves down due to their role and it is not helped with a fragile health and social care system. This does not mean there should be the tragedy of the ‘cared for’ suffering and also the carer. It is not selfish trying to set time for ourselves.

It could be a hobby, talking to a close friend or even confiding in another carer who has gone through that caring experience.

For more information on coping skills, please check out my video below.

Thanks for stopping by and if you are caring for someone, please also look after yourself.