Category Archives: Aimed at Carers

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

Telling your Carer’s story

Fotolia_73087289_XSHello, everyone, welcome back to another carer blog from former mental health care Matthew Mckenzie.

This time I am writing my book about my caring experiences. The book is soon due for release. I say probably about two weeks time or perhaps the end of next month. I certainly will release it really soon. I have titled my book “A caring mind” but I don’t want to talk too much about the book. The book involves a lot of things and I’ll be doing In more blogs about the book, due to my experiences of being a carer over the years.

This particular blog is about telling your story as a carer.

To watch the video about telling your story as a carer, see below.

One of the chapters in my book is about “my story”, which is chapter two. I also explain the reasons why I took on the caring role for my mother, plus also helping my brothers. I also explain what the things I experienced and I explain a bit about my carer story journey and how it changed over time.

A few things I want to point out is that when you tell your story it shines a spotlight or at least highlights specific issues. If you tell your story as a carer, it’s a way of forming connections to those who are listening to your story, this being other carers.

I find it’s a way of release, when you’re telling your story, especially if your carer’s journey was very difficult. When you just want to tell others “This is what I’ve experienced” or “This is what I’ve gone through” then you’re sharing it with other people.  It might not even be a difficult journey, but it is a way of releasing that out there.

Giving help

There are other main reasons and why it’s important to tell your story as a carer. I think probably the most biggest reason would be that you’re actually educating others. Now, I’ve mentioned before that you would be more likely be telling your story to other carers. In the past when I’ve told my story, and it could be at events or conferences, I found it was a way to educate not only the audience, but within the audience, you could have other carers and pacifically health professionals, those who provided health and support for your loved one or the person you’re caring for. So you’re educating the professionals via health or social care.

Now I’ve looked around as to why it is really important to tell your story as a carer and I’ve come across a report or document released in 2015. It’s came from NHS England website.

And basically the title of this document is “Using stories to improve patient carer, and staff experiences and outcomes” It mentions stories of staff, patient and caring experiences, and journeys through their health system enables NHS to redesign and improve care, according to the patient’s needs are the carer’s needs, where every step of the patient journey is examined and improved.

Reasons to tell your carer’s story

The whole aim of telling your story in some sense would be to improve how the health system works how local authorities provide carer’s support to carers.

When health and social care organisations do events, they want to look into what happened due to a serious incident or a death. They want to improve the approaches or systems regarding complaints or what worked well and what didn’t. They would look at perhaps this is a very good example would be a promotion of service perhaps in a ward or in a GP practice or surgery.

They will display information leaflets on what is happening in a particular service and a good way to promote the service is to have a carer or patient tell their story at that event. But there are many other reasons in using a story to improve the outcomes and redesign or improving health care, health and social care systems.

How you can form your own carer story?

You have to start somewhere. And the aim is to get that story out. Now, what I was told in the past when I was caring for my mom is to perhaps do a journal perhaps everyday if you can, or maybe once a week and how things have been developing because you can look back and look into that journal say, Okay, I tried this, it didn’t work out. It was kind of trying my out caring role and checking what is working.

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When you do a journal, it wasn’t really about to form a story. It was about to keep an eye on if anything goes wrong and you can provide evidence and it can help in writing a doctor’s letter, if there’s a particular issue or symptom that the person you were caring for is suffering, but it can also be used to form your own carers story.

Where can you tell your carer’s story

I want to talk about really where you would want to tell your care story. Now I found the easiest way that I, in the past have told Mark hear his story was probably at NHS carer support groups, because what would happen to your support group is that they would speak to each carer at that group and say you say to them, how things going along for yourself. So I think that’d be an easy way of building up the confidence to tell your story. Another way if you have a fair bit technical knowledge, is there’s no reason why you can’t develop an online video on YouTube.

A good way to tell your story is at events. As in conferences, promotions, especially at mental health trust events. When I was caring for someone using mental health services. My local mental health trust put on carer conferences or carer events, or even mental health events, and they would invite a carer, to tell their story, or even at board meetings, or NHS training courses.

They would invite carers to tell their story and as a way of co-production and getting involved. Another way would be to blog, your story. If you have a website or blog site, there’s no reason why you can’t blog about your carer story. Lastly you could immortalize your story in a book, but be aware that it’s important to have some aspect into confidentiality when you tell your story if the person is still alive or if there’s others involved in that story. Please try and think about confidentiality unless you agree with them that you have to mention them in your book or in your story.

Conclusion

In conclusion, you know, I’ve noticed Carer’s Trust and other major carer’s charity in the UK encourage carers to tell their story. I don’t think even matters even if you’re a carer or former carer, it’s always good to try and tell your story. never tire of telling your story again because it does educate others, and it’s a way of telling others about your identity, your carers identity, and has been a main part of your life.

Caring through stigma

 

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Hello fellow carers. Every so often during writing blogs off my carer forums, I tend to write about the carer experience. In this particular blog I want to write about stigma and make unpaid carers aware of what stigma is and the damage it can do.

Just to make things clear that when I talk about carers, I am not talking about NHS workers or nurses. I am talking about people who care for someone severely unwell in the family, or perhaps caring for a close friend. I am not saying that some in the NHS are not caring for someone in the family, but I want to cast the net out and bring in those whose identity is blurred away.

This blog site focuses a lot on mental health carers, so I do not want to stray too far from them. As a reminder a mental health carer is someone looking after a person with mental health needs. This could be a form of psychosis, bipolar, depression, Post-traumatic stress, OCD and so on.

Depressed woman sitting on stairs

Unfortunately with mental illness, stigma does strike at the heart of those affected. The stigma can affect both carer and ‘cared for’. Many may ask what is stigma?

The Shame

It does not take long to google the word ‘stigma’ and see it linked to mental illness. Stigma can involve many things, but often stigma is linked to mental illness.

Basically stigma is Fear and anxiety about a disease that can lead to negative attitudes and beliefs toward a person and their characteristics. This can be down to others not understanding mental illness be it a lack of education, awareness, fear or worst of all ridicule. With MH stigma, suffers of mental illness begin to lose friends, family support and can be ostracized from the community.

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The stigma often can hit the sufferers family and close relationships. Some in the family may stay clear from the situation leaving the most concerned to take on the carer role. Some in that family might even actively practice stigma and even then the sufferer of the illness might be stigmatised through their own illness as they will not engage with health and social care services.

Unfortunately it can be that the mental illness itself can blur how the sufferer understands what is effecting them. It is as if the mental illness makes it harder for the person to come to terms with what they are going through.

When I was caring for my mother, I noticed over the years how many friends withered away, even some neighbours kept their distance. I myself experienced a lot of stigma as some laughed at me when they realised I was caring for someone with mental illness. During the early years my mother became sectioned often as she struggled to cope with medication and support. Many would see her taking to the hospital by the police or ambulance and would gossip.

The continued experiences of watching my mother go through the rotating door of the mental health inpatient ward took its toll and I got tired of trying to educate and explain to others on reducing negative views. At one point, even I kept away from my mother as she took out her frustrations on me.

With no where to turn, I withdrew into myself and battled stress, depression and anxiety and mental illness can be catching. With a strong carer focus, I managed to look after myself and spare enough energy to continue to look after my mother.

Would not have it any other way

Looking back at it, I can be proud as I would often hear many let that stigma drive away those close to them. I stood by my mother until the very end as a son should do, although I am aware that not all carers can do this and there is no shame in walking away, because sometimes health and social care cannot provide that support.

There was always a risk that the stigma and lack of support would push me to becoming the next mental health patient, but I had to be strong. I had to keep working to help in bills, providing care and support, holding the family together and setting an example to fellow MH carers.

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I will not lie, the experience of care has worn me down and I do not get too close to others. There are some things I cannot explain as yet because it will bring painful memories to the surface. I can say this though that time and patience does help.

If I had to go through it all again, I probably would and I most likely would have done quite a few things differently.

There is no shame

As an educational part of this blog post, I would like to mention there is no shame in caring for someone with mental illness. It does of course depend how unwell they are and you as a carer will need support. It is advisable get as much support from health services, friends and family.

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You of course will have to be strong when stigma comes your way, many just do not understand. Many do not realize that mental illness is very common as we all suffer from anxiety, stress, anger and depression. It does not take long to notice that a tip over the edge can lead the sufferer to severe mental illness.

I certainly have more patience with those who have mental illness and refuse to laugh and joke when I see someone in the street battling the illness. It can happen to any of us or those we are close to. There is no shame in mental illness and with the corona virus epidemic, society will have to get used to mental health because there will be a lot more to deal with.

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.

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Latest edition of my MH Newspaper

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Hello all,

There are no Carer forums for December, but in the meantime I am working on the posters for my new carer peer support groups and also working on my Carer audio series.

 

For more information on my Therapeutic Carer Audio series, please check the link below.

Carer audio series

Please also check out the lastest edition of my Mental Health Newspaper.

 

Carer traits and characteristics

Finger art of a Happy couple. The concept of couple laughing.Welcome back, Its not long until “Carers Rights day”, which takes place on the 21st of November. I am sure to do a blog and maybe a video about it, but still it is a couple of weeks away, but keep a look out for local carer events in the meantime. This particular blog is on carer character traits.

Basically when people think about unpaid carers, they often think that the person is just caring for someone. In a way there are correct, but delve a little deeper and they could be off target. There is a whole lot more to a carers world than what people might think.

So I have decided to list and briefly explain some unpaid character traits, this blog is aimed not only at health professionals, but carers themselves who might wish to understand what they might find helpful on their carers journey.

Please take take note, not all unpaid carers are the same and due to trying to keep the blog post short, I have missed out a lot of carer character traits and skills.

Providing a simple hug.

Not all carers do this, it really depends on the relationship with the ‘cared for’. Some unpaid carers are very close to the person suffering either mental or physical ill health, but giving a simple hug to that person can help more than any words can say.

Authenticity

Just caring for someone shows that you are wearing the badge, you are wearing the carer’s badge and no one can say you have not been there. If asked to speak about your carers journey, then you will understand. An unpaid carers journey can be difficult, full of tension and a roller coaster ride. As a carer you can expect to take some massive blows, but at the same time you are growing stronger in your cause.

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Being a shoulder to cry on (very difficult)

Not always easy especially if the ‘cared for’ is distant from you, but as a carer you can always be there as a shoulder to cry on. There will be times that the ‘cared for’ will be let down by everyone, be it friends, health systems and so on. If you are close to the ‘cared for’, just being a carer will give them the opportunity to be the last person they can cry to.

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Being Present (most important!!)

The most important trait of an unpaid carer. There are only a few other ways to care, but being there is the ultimate role of a carer. Some people have big families, but not everyone in that family is going to equally care for the ‘cared for’. Sometimes the carer is the one who will sacrifice or put on hold their life to provide that much needed support. A carer will be there at hospital appointments, doctors appointments, care plan assessments, benefit assessments, they will provide medication or chase things up and more. Being there for the ‘cared for’ is what it takes to be a carer.

Being there when times are tough (difficult)

Being there is NOT enough, its when the chips are down that the true worth of being a carer is on the line. Its no good providing support when the crisis is over, but I am aware that carers cannot be around the person all the time. I am also aware that it is not a criticism of carers who tried so hard, but were pushed away, especially mental health carers. Still, there will be times when the impossible may be asked of you, as a carer you will need to be there especially when there is a crisis.

being there

Believing

There are not many rule books on being a carer, there has been times when I am thinking to myself am I doing the right thing, because no one can really tell you that you are living your life the best way. There were times my ‘cared for’ hit crisis after crisis and I was banging my head against a brick way with all the bureaucracy, confidentiality and red tape. I was even dealing with bullying from NHS staff siding with the ‘cared for’s’ criticism of me and to be frank, I was on my own. The keyword is ‘Belief’, you as a carer might have to dig down and start believing in yourself. What are you caring for? What are you fighting for? What are the costs? The sacrifices? Is it all your fault? Sometimes only you can answer those questions.

Compassion

Very close to being there as a carer, you will need to show compassion, patience and to be kind. It is not easy to do if you are under stress or constant pressure, being compassionate can even extend to others if you practice being compassionate to the person you care for. If you lack compassion, then you could do damage to the relationship.

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Confidentiality (Can be very difficult)

Sometimes carers have to be confidential about who they care for, but most times a carer will have to deal with confidentiality. It is frustrating because in the end it will be you that providing the carer and support, but how can you do your role if no one is saying what to expect for the ‘cared for’. Its like they are saying ‘Just get on with it’, when the patient is discharged into your care. I have noticed a culture where health professionals state the ‘cared for’ is discharged to the social worker’s care or the care coordinator’s care, but what happens they move on from their jobs or leave? The carer is the constant person in that role and should never be pushed aside or forgotten. Learn how confidentiality works, especially when Carer’s Rights Day takes place on the 21st of November.

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Connection

Being a connection to someone is not easy at all. It depends how close you are to the ‘cared for’. Sometimes a carer is just a person in name and role, but being a connection to someone is highly psychology. There are whole books on the subject on connecting to others and the subject is also one of the ‘5 ways of wellbeing’.

https://www.nhs.uk/conditions/stress-anxiety-depression/improve-mental-wellbeing/

It is not always easy connecting to someone who is unwell, but it can benefit yourself as well as the ‘cared for’.

Empathy

Similar to compassion, Empathy is the capacity to understand or feel what the ‘cared for’ is experiencing. This is why many carers try hard to work out what the situation is, so that they can provide adequate support and care. Without empathy then you are making guess work, but sometimes it is not always the carers fault. If unpaid carers are pushed out due to confidentiality or not involved, it is difficult to understand what the person is going through, especially if its mental health. Remember, if the health professional is not always present and the ‘cared for’ is very unwell, then it is usually up to the unpaid carer be it friend, neighbour or relation.

Helping (knowing when to help and how)

Sometimes caring is a grey area, there is more to caring than just helping with physical or mental health support. It is also being around to help, this might be arranging meetings, advocating, helping the health professional, helping with money situations and so on.

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Hope (Very common among carers)

Without this trait, you might even want to give up on caring for someone, there should be some form of hope that the ‘cared for’ will recover or at least live with the illness. Sometimes unfortunately there is no recovery, so all you can hope for is to be a witness to the person’s suffering, but deep down inside all unpaid carers hope for some change.

Love (most common thing among carers)

Another common trait with all unpaid carers. You care because you love the person or are emotionally tied to them. Love is a vague word, but without some form of love, it is difficult to care for someone let alone care for anything. Sometimes people overlook the love between carer and ‘cared for’, but it is there. Even if the carer had to walk away from their role, this still could be done out of love and when things really go wrong, then love hurts.

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Loyalty

Very difficult for carers to do, but being loyal to the ‘cared for’ can be an important trait, but what happens when the ‘cared for’ refuses help? When does the question of being loyal become a risk? This is when carers need to break confidentiality and raise the issue if the ‘cared for’ is at severe risk. E.g. reporting to the doctor, social worker or another professional.

Open and loving friends

Not really a carer trait, but something a carer would find helpful. Unfortunately, friends tend to go off packing when having to deal with a carer fighting something depressing. It does not help that carers due to their role will lack a social life, so it is harder to make new friends, but if you are lucky to have friends around who are open and understanding, it can help you in your carer journey.

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Openness.

A risky trait, but expect to use it sometimes. As a carer you will have to be honest about a situation, you might expect to be put between a wall and a hard place. Basically when the ‘cared for’ is refusing help, you will have to raise the call for help, even against the ‘cared for’ wishes. A carer will have to be truthful and open about what is going wrong and expect your relationship with the ‘cared for’ to decline, but think to yourself, what is the risk? You might be thankful one day that you were open and honest about something. Expect the relationship to be slow to build back up again, if ever.

Phone call to check on how someone is

As a carer, it helps to use many tools in your carer’s journey, this is often used if your a distant carer (someone caring from a distance). Even if the ‘cared for’ is not in crisis, a carer might call to see how things are, you might never know what the ‘cared for’ might say. Take note, that with the advent of smart phones, it might help to add the person on Whatsapp, Skype, Facebook or other applications.

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Quality time

Sometimes it is not always about care, care and caring. Spending quality time with the person can help make a difference. Think of it this way, what was the person like before they became unwell? Your relationship might have changed somewhat, but deep down they are still that same person. Sometimes spending quality time is what is needed and expect to do this as a carer to help connect with them.

Safety (common among carers)

Did I say common among carers? It probably is the number one rule book for unpaid carers. You might think providing a safe space for the ‘cared for’ is all that it is, but that is not the full story. Ever heard of the consequences when things go wrong in the health system? Carers will sometimes protect the ‘cared for’ especially when serious incidents will occur, think of wrong medications provided, or wrong decisions putting the ‘cared for’ at risk. Then it can be a tug of war when the carer has to push for the ‘cared for’ to get that support from the health and social care system. Overall the carer will have to be a shield for many things and expect to take some blows.

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Show up physically and mentally

Not the same as being there, expect to take on health and social care settings. Sometimes you as a carer might think some things are being done as a tick box, well you could be right. As a carer you will have to deal with the following professionals.

  • Clinical Psychologist
  • Psychiatrist
  • Nurses (different Bands)
  • Mental Health Counselor (families)
  • Social Worker
  • Care Coordinator
  • Ward Pharmacist
  • Occupational Therapist
  • Ward Manager
  • Admin for services
  • GP
  • Peer Specialists
  • Advocates
  • PALs Team
  • Home Treatment team staff

Yep! and this is only the HALF of it. So as a carer how would you prepare in an important meeting, if you are not sure what that person does or if the professional is being difficult? Well, I am sure at some point I will blog about engaging with professionals, but as a carer, do not expect the ‘cared for’ will do the legwork.

Smiling or trying to

As a carer you don’t have to do this, in fact it is better to seek support if you are feeling down rather than pretend and put on a false smile. It does obviously help to keep one’s spirits up, but be honest with your wellbeing and reach out for support for yourself as well.

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Someone to really listen (listening skills)

This is very important for unpaid carers. If the ‘cared for’ has no one to talk to then expect to listen and avoid saying much or criticism. This is not something easy to do, because it depends on your relationship to the ‘cared for’. There has been times I have had to listen because the person I care for ended up ranting due to being unhappy with how she was treated. It was just because there was no one she would trust to rant to instead, not even the Samaritans. In the end, I just kept quiet and listened, then walked away hoping that her complaining helped in some way. As a carer, expect to listen, but also expect to learn some listening skills.

Time alone (Important!!)

It is so important that you as a carer get time alone for yourself, it might be for recharging your energies, thinking things through or just relaxing. This is probably because a carer has to go through a lot, especially all the things that can play on the carer’s mind. If a carer cannot get time alone, then they could themselves become the next patient.

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Trust (Very common)

In health professional we trust! As carers you will need to put your trust in professionals because you cannot do everything yourself. You will have to hope and trust that your doctor will involve you in the ‘cared for’ situation. If that does not work, then pray the doctor is skilled in being diplomatic enough to remind the patient why they need support from those close to them. Sometimes doctors tend to take the easy way out and let the patient’s word be law, but life is not always as simple as that, why? Think about the serious incidents when the carers or public were right about someone being at risk and the health professionals were wrong. It does happen and unfortunately it won’t be the last, but until then the carer will have to trust in others and trust the ‘cared for’ will seek support.

Words of encouragement (what words to use)

Expect as a carer to encourage the ‘cared for’ to not give up hope. The carer will need to be skilled in being supportive with words and not only just in listening skills. In fact a carer may end up becoming some form of counselling for the ‘cared for’, but only if support structures are lacking.

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The conclusion.

Unfortunately these are just some of the carer’s traits in the carers journey. The carers world can be a difficult long struggle, but it can also be rewarding as you share the ‘cared for’ life successes, hopes, dreams and struggles. It need not be unbearable tough if you learn as much as you can on what it means to be a carer.

Good luck in your caring journey.

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Being part of something

106542Hey there! Welcome to another new blog from unpaid carer Matthew Mckenzie. I have just come back from the Carers UK Conference 2019. As a carer I was inspired on how the event went and felt part of something. I felt part something very big and felt I should write up a couple of my thoughts on this post.

I had shared a panel session at the Carers UK conference and due to limited time, I could not manage to say all what I would have liked, however I felt I got the main messages out there to the audience. I wish this particular blog post carries on my message to other unpaid carers who stumble across this blog post.

This message is to you…fellow carer.

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Carers and GP Surgeries

me_edited-1Welcome back to another blog post by unpaid Mental Health carer Matthew Mckenzie. I often write blog posts that try to focus on carer issues, but sometimes I stray into areas of mental health, events and the field of psychology, sociology and maybe psychiatry. Of course I don’t stop there. I run carer engagement/strategy forums in south London and every so often I tend to update how they went on this site. Feel free to check out my Youtube channel or twitter channels where one channel focuses on the carer experience and the other channel on mental health developments.

Enough with the shameless advertising, this particular post is on a much needed subject and it is aimed at unpaid carers, however I hope GP surgeries get the time to read considering at the last Lambeth forum there was major discussion on the Lambeth Patient Participation group network. I have also arranged for the Lewisham PPG chair of South Lewisham Practice to present and update the members of Lewisham BAME Carers forum.

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Sometimes us unpaid carers need to step up

smallerHello again, I have not blogged in a while, because being so active in my area due to attending events, running carer strategy forums and networking like hell. I know the title might seem a little off putting, but in my long experience of being involved in health and mental health services as an unpaid carer, there are a few things I have noticed.

Just to note, I am writing as an unpaid mental health carer, basically a carer supporting someone close who has mental health needs. Unpaid carers struggle quite a bit to get noticed, their culture is to put the ‘cared for first’ and themselves last. Perhaps it is a respected human trait, carers come with a big heart, but it does come with some risks. This is what I will be blogging about today.

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Including unpaid carers in NHS Co-Production

20140621_215858Welcome back to another blog. I have not posted in a while, so thought to quickly write up a post just after Easter. I suspect I have been so busy running Carer strategy forums, that it has stopped me from writing more media. For this particular write up, I felt it was important since I have been asked over the years on my views regarding coproduction for unpaid carers in the NHS.

I have been in co-production in the NHS for close to 15 years and I still struggle with the concept, when people think of co-production, they often tend to focus on those who receive the service. Thus the patient tends to be the focus of engagement. This is not a bad thing, but we must remember not all services are alike and in the NHS there are level of services that the unpaid carer needs to access. We also must remember that mental health services cannot risk to close out those who support the patient/service user. It goes in common sense that the more people included in the support of the patient, the better the outcomes. Despite some of the odd voices that feel carers/families should not be included because they lack the understanding or experience of mental health.

There are many reasons why families and carers need to fight for their equal share of co-production, engagement and inclusion, but that is a blog for another time.

Before I continue, co-production is a vast and complex method, so one simple blog cannot do it justice, so I will revisit such a method in the future.

Why co-production is needed for carers in the NHS

The NHS is always changing and yet it is almost always the same. Sounds confusing doesn’t it? Technology, new nursing techniques and policies move the NHS forward, yet the NHS focuses on health for all and fights to stay that way. Families and carers although not using the core of the mental health services, have a vast amount of knowledge in regards to how services can empower everyone. Particularly the ‘cared for’ who are using the mental health services. No one wants to take away the power from service users/patients, but power and decisions should try to be shared to include all, especially families and carers.

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You do not have to look very hard to find out what happens when families & carers are not listened to. Mental health trusts their hospitals and services can come under scrutiny when serious incidents occur and dig down hard enough you will find a voice warning staff of ‘cared for’ health concerns. Of course each scenario should be done via a case by case issue, not all carers are angels, but it would be foolish to state the majority of families and carers have it in for the ‘cared for’.

Families & carers do not want to take power away from the patients who use the services, in fact they would rather not get involved, simply because there is no time and they would happily just want to get on with their lives. Alas the state of declining services (not just NHS) is a call to arms, not just to plead to the NHS to include families and carers, but for families and carers to sit up and get themselves noticed.

Carers included

As a reminder, this blog post is about co-production to include unpaid carers. Unpaid carers are emotionally tied to the ‘cared for’, be it families, friends or neighbours, but usually it is the families or those in the family unit that fight hard for the ‘cared for’.

In no way do I want to push aside the patient/service user or do I want to lessen the value of their experience, but if it is hard for the service user to access co-production, then culture might make it very difficult for the family and carer who by numbers alone are lacking in involvement in the NHS at all levels.

Comforting friend. Woman consoling her sad friend.

Local organisations included

As an unpaid carer, I have been lucky to engage and be involved in a number of organisations, some local and others not so local. I am talking about Carer Centres, local Healthwatch and mental health advocacy/charity organisations. We all know that it is very difficult for the NHS to shape services based on the few, so they have to rely on the third sector to also be the voice for carers. I say ‘also’ because families and unpaid carers still should be included. Without the support of the organisations, then there are certain risks that can cause co-production to fail.

This could be

  • Word not getting out to other unpaid carers to co-produce
  • No one knowing what is going on.
  • Hard to develop services for the community because only the few are listened to.
  • Relationships break down with the organisations.
  • Trust begins to break down.
  • Quality of Services deteriorate.
  • Culture of non-inclusion develops.

Supporting others in their community

If someone from a clinical back ground is reading this, I am sure they may have got into their profession because they want to support people’s health with their skills. It would be difficult to always be around the patient, so due to lack of resources and time, we need to give the skills and power for people to support themselves in their community. If the power is shared to others to help shape their own health in the community, then resources can avoid extra strain. We want people to value their own health and well-being, to do this we must educate others about the importance of health and be educated ourselves on what others think about their own health and the level of services.

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It goes without saying the more people are supported to do this, the more it filters down in the community for others to learn from those who are empowered. It is a numbers game, we need to reach out to the majority, even if starting out with the few who push to connect with others.  The network should be supported to spread the message.

Call to arms

The NHS is boring. There!! I said it!! I do not mean any disrespect, but what do I mean when I say this? Sometimes people do not rush to be involved because they cannot understand the dry jargon of the NHS. If it becomes complex, it then becomes boring. If co-production and inclusion becomes boring, then people keep away, patients keep away and unpaid carers just do not have the time. Families and carers have enough to worry about, I should know. There is not a day I am thinking to myself about the the past mistakes, regrets and worries about who I support and care for. I often think to myself, why am I in a meeting which I clearly do not understand?

Perhaps there needs to be a way where we need to produce exciting initiatives to include families and carers. Is the NHS speaking the language of the service user? Or the language of themselves e.g. NHS jargon? How can we speak the language of families and carers? Of course the NHS cannot shoulder the blame for everything, sometimes carers can be at fault being naive of our services are being designed to include them.

Making it as simple as possible

Due to what was mentioned in the previous heading, it is difficult for the NHS to include those who if they find interaction and co-production boring. It helps if the NHS can make things as simple as possible. I have seen quite a lot of material and strategy that works this way and I have seen some amazing success stories. Still there are many services that need to focus on what NHS leaflets they are producing. It is not just media or information, it is engagement, inclusion, documents, how meetings are run and organised and even training.

Investment in people

When you invest in people, it will eventually pay off. Unfortunately the NHS has a habit of investing in services, their can be a problem of looking at services alone via the cost. This is due to the culture of NHS service commissioning. No fault of the NHS, but there is a tug of war to state we should not just look at the quality of service, invest in the people who the services are being designed for. Investing in people might mean funding their projects, valuing their time, buying in those who can set an example and lead people to be included. It is not always about money either, investment can also mean time and dedication, but we need to invest to value the use of co-production.

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How to get people excited?

Maybe it is the language used? People do not all speak the NHS lingo, even though the NHS shapes so much of our lives. We need to get people excited to join in on the co-production. What can the NHS do to learn from others? How do political parties get their voters to vote? How do movies get people to watch their films? How do restaurants get people to buy their food? It is about the product? It is about getting the message across. Health is important to us all, but how can we get families and carers to be excited about this? We do not always need to have the angry carer screaming for co-production. It should also be about carers wanting to make a change and a difference.

Same old problems

Did I mention the NHS has a culture of being the same? There have been some important meetings where I am hearing from service users that the NHS tends to reward itself. We hear the same stories of influences being rewarded (usually the top awards) in the NHS all being NHS CEOs? well, there might be the odd service user or carer. Take a look at some of NHS trust’s twitter feeds to see how some trusts can be rather self serving, although it is not a major criticism since it is important to value hard working staff, but you often wonder why patients and carers are not mentioned in regards to their successes?

If getting people excited for co-production to happen, then there should also be initiatives as well. We want to reward those who lead by example. If you want co-production to spread, we have to show how it is valued on the hospital wards, the community services and beyond. We cannot just include others and then tell them ‘thank you’ and get lost. We need to value their time and reward them, but how?

What we get out of this?

It is a ‘no brainer’ this one. The first thing to change would be that service quality would improve. Next would be culture change, which is hard to change itself. People would care about the NHS services, and I mean not the few, but the many. We would have a filter down process where people would speak more about the services as they would speak about what was on TV last night. Staff would not have to feel so much pressure as there would be confidence to provide the service people want. Of course we have to be realistic, we cannot design services to make everyone happy. There will be that person who is unhappy about everything and would want change now, but that is not possible and such people will find themselves being shut out.

We want unpaid carers to be self sufficient where they are empowered to do so. We want families and carers to be included and be excited about being included. We want a culture change to reward and value those who want to see change.

Standing on the shoulders of giants

I am sure co-production sprung out of the service user movement, there must be many examples out there, especially due to the mistakes psychiatry made in the past. E.g. the persecution of LGBT groups, institutionalization, misunderstanding and high death rates of BAME patients, problems of being quick to label others mentally unwell due to new diagnosis and so on. I will not pretend I know everything about co-production and I should not be celebrated in doing so. However I will admit that we all can and should contribute to co-production, even if it fails, it still sets an example to the next generation.

Triangle of care – Excellent NHS carer engagement

10177241_747738765268892_5890142387668348507_nIt has been a while since I blogged off my site, almost a month now. Still I have been very busy, lots going on and still lots to do. I run 4 carer forums each month and am also an unpaid carer working part time and contributing to so much in the community.

Yet I am aware many unpaid carers supporting those with mental health needs cannot easily engage with services. This is one of the many reasons why I chose to write this post. I am an unpaid mental health carer in south london, and have been involved with the Triangle of Care at a high level. Due to the involvement I am proud to be part of such a successful initiative. My trust has not been part of the Triangle of Care scheme even though I battle on, but it has got me wondering.

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What would it be like to be a carer whose NHS Trust is part of the Triangle of Care scheme?

If you do not know about the Triangle of Care policy, let me enlighten you.

Taken from the Carers Trust website, which is national charity fighting for the rights of young carers and carers alike.

“The Triangle of Care guide was launched in July 2010 by The Princess Royal Trust for Carers (now Carers Trust) and the National Mental Health Development Unit to highlight the need for better involvement of carers and families in the care planning and treatment of people with mental ill-health.”

Many Mental health NHS trusts up and down the country have taken the challenge and value the needs not only of their patients/service users, but also unpaid carers who often can be forgotten in Trust Policy, let alone in government policy.

The triangle of care gives six standards

1) Carers and the essential role they play are identified at first contact or as soon as possible thereafter.
2) Staff are ‘carer aware’ and trained in carer engagement strategies.
3) Policy and practice protocols re: confidentiality and sharing information, are in place.
4) Defined post(s) responsible for carers are in place.
5) A carer introduction to the service and staff is available, with a relevant range of information across the care pathway.
6) A range of carer support services is available.

I have mentioned such standards because there is a lot more to the Triangle of Care, but if you are not versed in policy then at least focus on the standards above.

So what could it be like being a carer linked to ToC?

If you are a carer whose mental health trust has signed or is working towards the triangle of care, I will list why it perhaps is a good thing.

1) You are lucky enough to have a trust working towards a national standard.
2) As a carer you can learn more about what your trust is doing for carers and their loved ones.
3) You can use these standards to protect your rights.
4) You have a mental health trust that can link into partner trusts all working together for the good of unpaid carers.
5) Standards that can be measured and assessed by others.
6) A mental health trust brave enough to change its culture on unpaid carers.
7) A way to hold mental health trusts to account on how it engages and provides services for carers.
8) Hidden issues that can be unraveled by triangle of care.

Obviously the list can go on and continue to go on, but an NHS trust that can put some resources to the Triangle of care should be held in high regard among carers.

I am not saying that the system is perfect, it is NOT a quick fix solution, especially in the era of NHS cuts, cuts to staff, cuts to community services and a lack of understanding in mental health. We are also living in a complex society where so much is demanded from us, be it Brexit, having to struggle for education, fragmentation in communities and the lack of volunteering since everyone wants to be better off.

All I am saying is if you are an unpaid carer thinking how can your NHS trust support, engage or value you, then please see what they are doing with the Triangle of Care.

Although the triangle of care is going through some changes. You can find out more about the Triangle of Care below.

https://professionals.carers.org/working-mental-health-carers/triangle-care-mental-health/triangle-care-membership-scheme