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.Embed from Getty Images
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?
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 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.Embed from Getty Images
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.Embed from Getty Images
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.