Monthly Archives: June 2020

Making that difference

Silhouette of man showing his hand on sunset sky background, Successful business concept.Welcome to a blog site of former carer Matthew McKenzie from South London. I used to care for my mother who passed away this year. For close to 18 years I have been supporting her and my brothers who both have autism, but for my mother she had a difficult time with mental health. There was only so much I could do and a lot of support depended on health and social care services that were already struggling.

Fast forward to the year 2020 and as I have moved beyond my role as carer, I still support my brothers or as a decent family member still be there for them. My main carer role has ended and yet I feel many other carers have just begun especially due to the corona virus hitting the country hard. In the back of my mind, I really feel for families and carers having to struggling with their caring duties under lock-down. It is true that the lock-down is slowly being eased, but there is always the fear of increased virus infections. With the lock-down also came economic hardship and it only looked like we were just to come out of austerity.

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With the news that we are now to see a recession that we have never experienced before, many families and carers are wondering to themselves when will this end? For 10 years, carers had to scrape through the cuts to social services, cuts to the NHS, cuts to welfare and struggle to make ends meet, because if you are caring then it is difficult to be earning.

Most carers do their role out of emotional attachment, duty and love. Carers are not in it for the money because we are not care workers. Of course money does help, but in my carer journey I never received any benefits because I work part time. I

Midway through my carer journey, I thought to myself what else could I do to share knowledge, skills and experience to help other carers who care for someone with a mental illness. I would often share my story to health professionals hoping that a carer’s story will make them think twice when involving carers. Carer stories are so important to raising awareness, but they are not the only tool in the box. I thought to myself what else could I do raise the banner of unpaid carers? I then got involved in my local mental health NHS Trust. I felt as carers with our experience and motivation, we can work with the NHS to promote and co-produce services that have carers in mind.

Yet, all the above was a good thing to do as a carer, I felt that was not enough. After a while I developed my website and social media to bang the drum of carer awareness. I have been running my blog site close to 7 years now and it has been shared and referenced by the NHS for many years. I have been proud of my site, social media, podcast and YouTube channels. Still, I thought that is not enough. What else could I do?

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I then moved to set up carer forums, which are designed to help families and carers query and engage with the NHS and also social services. Over the 5 years the carer forums have been running in Lewisham, Southwark, Lambeth and a special BAME carer forum in Lewisham. I run 5 a month and also run a peer carer support group in Greenwich with plans to set up other carer groups in the future. Still, I felt more could be done.

I can see myself moving towards carer peer support and carer champion although in the realms of raising awareness of carers supporting those with mental health challenges. As good as it sounds, it is not enough so with some thought, what could make the difference?

The Difference.

The thing that will make a difference is you. If you are a carer who is caring for someone with MH challenges. I know that you are the spark that can set the flame alight. I have done a lot, but I know that carers out there are going through a tough time taking the blows and wondering if anyone out there can recognise their plight.

If you are a carer reading this, I want you to take note that unfortunately caring in itself is not enough. You have to get out there and find out what your rights are. It is so important to register at the carer centers and find what support groups you can access. Learn the experiences of other carers, carers have all different experiences and we can share what works and what does not. As a former carer, I am asking you to dig deep and give just a bit more, but not in your caring role. I want you to get out there and network. I want you to use your opinion and link up with healthwatches to feedback views on health and social care.

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It is your right as a carer to say what is helping you. It is also a right to mention what is helping the person you care for. As a carer if you do not say anything, the risk is health and social care services can only guess what support you need. Do not be afraid and put off in using your voice. Do not let anyone put you off in sharing your carer’s experience. As long as you are being diplomatic, then leaders of health and social care should take your experiences to heart and will involve you.

As a carer you are not alone. There are so many mental health carers out there, but you must take that step to network with them. You must take that step to band together with fellow carers and educate each other about the systems in place. I promise you that services will change and with the recession heading towards us then the change will not be for the better.

The time is now to make your voice heard and group together. The time is now to support charities and organisations that fight and advocate for carers. As a carer you must not shut up and put up with what is available. You are not only risking the health of your loved one, but the health of yourself if services are not supporting you.

Band together with carers and encourage them to get involved and use that voice as the larger the group,  the louder that voice.  With millions of carers, you already have an army at hand.

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Make that difference not as a carer, but someone that counts. Do not be ignored and fade away into the darkness of social distancing, loneliness and isolation. Think to yourself that you count, or even better say it. You as a carer can make that difference and make it count.

Good luck with your carers Journey.

Lewisham BAME MH Carer Forum May 2020

enteranceWelcome to the May update of my Lewisham BAME mental health carers forum. This is one of my 5 carer groups that focuses on the experiences of BAME carers and sometimes BAME groups suffering mental ill health.  I usually run this forum from the Lewisham Branch of Bromley, Lewisham & Greenwich MIND.  Due to CoronaVirus I have moved the forum online via ZOOM.

As a reminder the forum is not a support group, but a way to connect to health providers in the community. The forums focus is of course on mental health services so our local mental health trust (South London and Maudsley) engages with BAME families and carers at the forum.

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Beyond Carers Week 2020

smallerHello everyone and fellow carers. Just a quick blog post now that Carers Week has ended. For those who do not know about Carers Week, basically it is an awareness event that looks to raise the awareness of unpaid carers throughout the week of June 8th – 14th.

Carers Week is an annual awareness campaign to celebrate and recognise the vital contribution made by the UK’s 6.5 million carers.

My view on how Carers Week 2020 went

I am not sure if many people or blogs mention views on post events. I felt Carers Week 2020 really raised the bar for Carers week 2021 due to the amount of activities, events and awareness drives from people, charities and organisations. I have been involved in quite a few carer awareness events over that week.

It was great to see so many mental health trusts help promote the awareness of mental health carers. Mental Health can often be portrayed as the hidden illness and due to the theme of Carers Week 2020 “Making Carers visible”, it is so important carers become unhidden.

Mental illness can come with stigma and so caring can also come with its own stigma. Some people caring for someone with a serious mental illness can remain hidden due to shame, guilt or desperately holding on to the family relationships. Many do not know or understand that if they are caring then they ARE carers.

Carers Week gives the chance to tackle carer stigma and more.  Carers need as much awareness as possible.

My Thanks for Carers Week

I would like to thank Carers Week for involving me and giving me a chance to voice my carer’s experience.

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It was great to see my story mentioned in South London and Maudsley’s blog posts.

https://slam.nhs.uk/media/our-blog/carers-week-matthew-s-story/?fbclid=IwAR2ZsJiAElOqRwiLE5LB-agDHL8MyuDsbaop_HelUTKHVQn9LiBR9Rnd1zM

There of course were other carer awareness raising events from other MH NHS trusts I am involved in as I noticed West London’s own carer story also appeared  (shown below).

https://www.westlondon.nhs.uk/news-events/carers-at-the-heart-of-patient-care-anns-story/

With Oxleas,  SWLSTG, CNWL NHS Trust and many others also promoting Carers Week, I hope they continue to support the important work carers do.

I would also like to thank Carers Lambeth Hub for their promotional video on Carers Week shown below

I even did my own video

Lastly I want to thank the charity SANE for helping to promote my views regarding mental health Caring.

Matthew Mckenzie - SANE

Beyond Carers Week

With Carers Week there is always a chance to educate not only health professionals and decision makers, but also the carers themselves. There is no shame in being there for someone, even if the mental illness pushes you away. You would want to be there for the person you care for and not see them continue to suffer.

The state of health and social care now demands carers put in extra to support who they care for, because with the strain on the system it seems the community must take on more. We know health and social care has done so much, but with the lack of nurses entering the profession, lack of social workers, strain on the NHS and the impact of COVID-19 more will be asked of the millions of carers across the UK.

Carers Week is aware of these challenges and those involved will do as much as they can to reduce the strain on Carers. Still we all know that with the end of Carers Week, Carers will continue to rely on charities like Carers Trust and CarersUK and the support of the carer centres and the health and social care system.

I am not asking for much but continued awareness and involvement of families and carers, we deserve to be recognised.

My Carers Pledge

As I move from my role as carer to expert by experience. I will strive to also continue my role running my carer forums and carer support groups aimed at mental health carers.   You can check out my online carer groups below

https://caringmindblog.com/mental-health-events/

I will promote the importance of involving, identifying and engaging with carers of those suffering mental illness and I will work to promote mental health.  My focus will also be on carer peer support, but also advocating for carer empowerment as carers must be given the chance to query systems and policies.

Thanks for reading my blog post.

Study in the experiences of loneliness and isolation of MH Groups

Researchers at UCL would like to talk to people aged 18 and over to find out about their experiences during the virus outbreak, and more generally, their experiences of feeling lonely or isolated and how they may relate to experiences of mental health problems.

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For more information on this study please visit their site below

https://www.ucl.ac.uk/psychiatry/research/epidemiology-and-applied-clinical-research-department/loneliness-and-social-isolation-26

Southwark MH Carers forum May 2020

logo and coverHere is May’s update of the Southwark mental health carers forum. This is one of the 4 to 5 carer groups I run each month. All carer forums and support groups are run online via Zoom due to social distancing because of COVID-19. I feel families and carers still need to know what is happening with services especially when health and social care is under strain.

In attendance for the forum we had carers from Southwark and also from Lambeth since the Lambeth carers forum is not running at the moment. We were also joined by trustees of Southwark Carers, plus Southwark Healthwatch were in attendance. We were also joined by Maudsley’s NHS Southwark inpatient carer lead, plus a carer who co-runs their carer groups. The main presentation was from Bernadette Pickerell who is SLaM’s Mental Health Act Team Leader and Senior MHA Co-ordinator.

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