Author Archives: mmckenz11

About mmckenz11

IT Officer for London School of Osteopathy and a Carer representative for Maudsley. As you can see, I have many interests shown off my blog. I hope to keep it updated with posts and more things to come soon.

Health and well-being in the community

https___cdn.evbuc.com_images_50751415_246297577353_1_originalI recently came back from an event held by an award winning social consultancy called “We Coproduce”. The event was a 2 day look at Trauma and its causes due to the tragady of Grenfell Tower, it was one of the best times for the community over in the London borough of Kensington and Chelsea. When I arrived at the event, I was amazed to see how many of the public turned up and how many were interested in the talks.

Many speakers were talking at the event including

Dr. Gabor Maté
Dr Karen Treisman
Donna Lancaster
Marta Antero
Ruth Culver
….and many more.

I remember being sat in the audience listening to the speakers and learning not only about Trauma, but psychology and psychiatry, even though as an unpaid carer I often feel distant from such subjects. The event was hosted by Jane Mcgrath who is very active in the community advocating for better mental health outcomes for all.

Still, one thing about the event got me thinking. A lot of what was mentioned at the event was community, especially due to the horrific events that occurred in June 2017. If there is one thing to learn from the Grenfell tower tragedy, it is how communities come together and look to speak as one to hold others to account. The 2-day event was also important because so many were affected by the outcomes of the tragedy in regards to mental health. Never was it so important to look at our mental health services and how it should support the community or perhaps how the community has the power to support itself.

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Community from a carers perspective

As an unpaid carer caring for someone using the mental health services, I often think to myself the importance of community. I feel as a community we all need to come together and share what affects us. I feel I cannot be the only unpaid carer in the community I am in and I often seek to connect with others about how my role affects me. As an carer being in the community is not enough and it can be so easy to be isolated from each other, especially if one is also suffering mental ill health. A community that has an interest in health can lead to a healthier community, but such events like the “Trauma Matters” event can help bring the community together and help in healing and learning from each other.

My loose interest in sociology

As you go though parts of my website, you will notice areas of psychology, psychiatry and sociology. I know that psychiatry basically is interested in how mental health affects the individual, but what about when mental health affects groups of people? How about when mental health affects the community? This was one of the reasons why I wanted to attend the event and examine what was spoken to the audience and the questions raised.

I often understand sociology gets a bad rap for not being scientific enough and maybe that is ok, but I still feel it is so important to understand how groups, community, organisations work, grow are are alive when it comes to health and well-being. It is so interesting to delve further into how we are all connected even though we feel pressured to get on with our own lives.

Being active in the community

Living in the community is not enough, we must be active in the community, I am no expert speaker on this, but I often observe and think to myself “What makes a good community?”. When I travel and network with mental health forums, groups or organisations, I am amazed with the work “We Coproduce” does. They have done so much for the community not only in their own area, but further afield.

You can find out more about them from the site below.

https://www.wecoproduce.com/

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I always have in my mind, what is working in one area of the community and what is not working. One thing I look for is what people are aware of who is running their mental health services. Who understands who commissions the services, how involved is the community and are people listened to? I certainly will like to travel and network with other parts of London, but I have been so welcomed in west London, it almost feels I am part of the community.

Showing you care

Not only being active in the community is important, but showing you care about the community. At the “Trauma Matters” event, a lot of what was mentioned and shown was showing people that there is always a chance for recovery. The event showed that health, wellbeing and healing can really help the community and if one is active and showing they care about the community and that they care about themselves, it can influence others to do the same.

Yet, we must connect with each other, which is not an easy thing to do.

Being there

We cannot always advocate for better mental health in isolation. If we want change, we need to be active in the community and do things for the community. Never before has so much pressure been placed on the community, if it is not only austerity, it is the pressure of resources. The mental health system has become more about auditing and less of a sharing on the recovery journey.

hands

There just is not enough time and there are just not enough health professionals. Life is more faster pace and everyone wants to get where they need to go in a hurry, that they do not even stop to think about their life. We are all almost competing with each other rather than connecting and sharing. The field of caring for others is one of the core roles of a carer, but a good carer can notice when the community or environment is uncaring. If it is not youth stabbings, which again is a disease, it is lack of resources, if not that then it is lack of control and power for the community to decide it’s own outcomes in mental wellbeing.

A shared aspect

When I examine community due to attending the event held on the 15th of June, I think about how people live and I think about the area they live in. I think about what really is important to people? Is living enough? Or do we as a community want more than just getting by? Do we as a community always seek to impress others? Or do we really care not only for ourselves, but for others?

Each area I travel to, I look for what is unique in that community, I look for its identity. I look for who is active in the area and how they focus on health and wellbeing. When I try to attend the forums run by We CoProduce, I look to see who attends and how they work on coproduction. I especially look for Clinical commissioners since one of their focus is to involve themselves in the community and find out what really matters when it comes to mental health, health and wellbeing.

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We in the community have a shared purpose, we want healthier communities, but for a community there should be co-production. It might seem basic and easy at first, but co-production has become a buzz word and there is a lot more to it than getting peoples views and then wandering off. Health commissioning should allow for joint ownership, especially with those who take the effort to engage as a community to seek better health outcomes for all. As a community we need to share that purpose, but unfortunately has mental health and health provision changed fast enough for the needs of the community?

Core values of the community

Communities move and shape and evolve, It might seem that society stays in one place, but as I learnt from the Trauma event, organisations and communities are organic and alive. Communities have a mind of its own are deeply affected by what happens in the community. People should be made to feel part of the community, what happens to one person can easily spread if no one cares to take notice. I often think back to how Joyce Vincent who was actually born in Hammersmith died in isolation and was undiscovered for 2 years over in her flat in Wood Green.

 

melancholy and sad young  woman  at the window in the rain

Cases of isolation, neglect and deprivation leaves a stain on the community. Especially when it comes to mental health, it can be all to easy to be isolated and forgotten. As a civilised nation, we often proud ourselves how things can be structured and put in place, hidden away as if to know there is nothing fragile to be shown. All I can say is no matter our identity, we should try to care for each other. We should try to connect and find out what is going on.

It should not be about business as usual and trying to get ahead, competition can be exciting, but it can often go against the community in so many ways. Mental health does not just affect the individual, it affects whole communities unseen or not. Mental health is there.

The final word on community

Due to the Grenfell situation, it shows that if something like that happens in the community, we all feel it. A good community wants others to be a part of it. A community should feel welcoming and share its identity, without sharing or caring, we can risk isolation. It can happen to us all and it can happen quickly. A common goal of each community unfortunately is not enough. If we can learn from each we can be active in shaping the community for health and wellbeing for all, which is the focus of the NHS. We cannot be doing the same thing and expect different results.

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Carers Week 2019 – Connecting Carers

Giving help

Hello all.

Thanks for taking the time to read my blog. I am raising awareness for Carers Week 2019.  I am what you know as a mental health carer, an unpaid carer providing support to someone with Mental Health needs. I am not afraid to say this, mental illness is very common and can be quite easy to hide.

However lets not focus on mental health for now, this blog is about carers week 2019. I thought it worth to use my time to promote the cause of Carers Week 2019.

If you want to watch my video blog, please click the video below to play it.

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK. It also helps people who don’t think of themselves as having caring responsibilities to identify as carers and access much-needed support.

Carers week runs from June 10 – 16th. Carers week 2019 has the theme of “Getting Carers Connected in their communities”….and boy don’t carers need it.

Here are some facts about carers

  • A carer is someone looking after someone close suffering physical or mental health, or even both.
  • There are around seven million carers in the UK
  • Carers save the economy £132 billion per year, an average of £19,336 per carer
  • There are many types of carers, Young carers, Mental Health carers, Older carers, remote carers and more.
  • 68% of young carers are bullied in schools (taken from Carers Trust website)
  • Caring can unfortunately reduce carers ability to socialise and network, carer stigma can make that worse, especially if caring for someone with complex needs.
  • Connecting carers to communities can educate communities about carers, about the isolation and stigma carers can face. A caring community is in everyone’s benefit.

How can you support Carers week 2019?

  • If you are a carer or not, try ask what your MP is doing to support Carers in your area?
  • You could try speak at an event, or attend an event about carers.
  • If you want to keep it on the down low, try educate yourself about carers week, check out the carers week website Carers Week 2019
  • You could also Make a pledge on the Carers Week website.

Anyway I hope to do more video blogs soon, lots to do and say, and lots to say and do. Promotion of carers, mental health, psychology and psychiatry and the NHS can be so important.

 

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.

Before I start writing I want to give a brief apology. In no way do I lay the blame on unpaid families and carers who find themselves at the centre of a serious incident. This is when the health service has failed them or something has failed. Hence a loved one has died in hospital due to some form of negligence or perhaps been failed in the community. Those families we could learn a lot from, but what can us carers do to lessen such tragedies from happening? We cannot expect the ‘service user’ or ‘patient’ to take up the cause. Us unpaid carers are more important than we even know.

Why do certain things happen time and time again

You turn on the TV one day, perhaps listen to the radio or read a story in the newspaper. There it is, you notice the big story, someone else has been failed by the system. Someone has taken their life in a mental health ward or died due to medical complications. We see the pictures of the crying tearful family asking that awful question. “Why?”.

melancholy and sad young  woman  at the window in the rain

Why do these things happen time and time again. Then after years of investigation and perhaps compensations and accusations, the end result is lesson learned. Maybe some change in policies, maybe some change in staff, maybe a change in leadership. Until next time the same thing happens again. Perhaps figures are improving in some areas, but us families and carers cannot always take the risk. We need to also be the drivers in the road to a good health system. I am not saying we can wipe out all risks and tragedies, but we need to be vigilant.

So what are the causes of these repeated mistakes?

Just to repeat there are plenty of reasons why carers are NOT at fault, this could be that the health services are not taking notice of cracks in the system, it could be lack of resources buckling under the strain, even mismanagement and poor staff training. However there are some things us carers need to take note of.

  • Lack of engagement / involvement

When there are designs in new health systems and health services a call goes out to those in the area or in the community. The call goes like this “What do YOU think of these health changes?”. I have seen time and time again the same faces at engagement events and update events, this is not a problem at all, but the health service affects the community and not just those at the meeting. One needs to ask where is the drive to get more involved?

  • Dont know who you are

This is probably down to carer awareness, it is hard for unpaid carers to know who they are when forces out there try to steal the carer label, yep. I am talking about the care workers and foster carers, not to say they do not have their own problems.  Its just so many try to take that label when we know they are fairly supported, when unpaid carers by definition are caring on an emotional level, not excluding friend or neighbour. Some families can get by without the term carer and that is ok, but going without that identity for too long can cause them to not get a carers assessment, not be counted to plan out their carers journey, not inputting to carer pathways and policies and the list goes on. This is one of the situations where carers cannot always be at fault. Its all about education, its all about banging that drum to say ‘carers included’. If you know who you are and what your entitled to, then its almost possible to know what to ask for.

African American man questioning something, horizontal

  • Not sure what is expected of you

If you do not know you are a carer or prefer not to be named as one, then it is harder to know your role and you end up just coping, that is unless you are fortunate enough to have a big family, larger resources or live in an area where the health and social services are geared up. If the health service does not engage with families and carers, then how can us unpaid carers know what is expected of us? Its a lot more than just down to getting carer’s assessments. It is also down to attending events and voicing our opinions, its also being down to being added as a carer to GP surgeries and patient databases. Sometimes us carers might not be referred anywhere because we might not know we are caring for someone. Who is it up to in order to educate families that they have become an unpaid carer? Is it down to the care lead on the wards? or the care coordinator or social worker? Is it down to the doctors or hospitals? Maybe it goes way beyond and has to be down to polices and laws.

If unpaid carers do not know what is expected of them, then ‘loved ones’ can risk falling through the cracks in the system, there becomes less safeguards.

  • Not sure about services

Just to note, if you are starting out as a carer, most of what I say should not fall upon you, because you will begin to ask such questions yourself and rightly so. However, if no one educates carers on who they are and what should be expected of them, what about when it comes to accessing services? Do you often hear the term Mental Health carers? Well such carers sometimes have to advocate for those with mental health needs, I know we have strong service users and patients who can fight for themselves, but lets not kid ourselves. When serious incidents happen, it does not take long to see families and carers warning of serious risks to those affected by mental illness. I admit not all families and carers are angels, but we must look at things via a case by case method, the majority of serious incidents usually ends up with the family devastated and asking questions on why it has happened.

When carers especially mental health carers do not know about mental health services and how to navigate them, then will find it doubly hard to advocate for those who need the services. To often the term ‘service user’ is used as a way to exclude the family or carer and focus on the ‘service user’, I am not saying that it should completely change, but not all carers are alike and mental health carers need understand why mental services work the way they do.

  • People ask for your views….then disappear

Well i don’t think I need to explain this one fully, the title says it all, but just incase. Yeah. Its commissioning again. Perhaps someone at an NHS trust is pressured to change a health service. Maybe even pathways or social care policies change. We have this big engagement event or series of engagement events. They promise the changes and take views into account and…..disappear.

blurred  Business Conference and Presentation. Audience in the conference hall. Business and Entrepreneurship.

So? whats happened? Who holds them to account? Who is paid to hold them to account? who is brave enough to ask those silly questions? Especially if no one understands who they are, whats expected of them and have no clue about the health system. Maybe the health configuration changes has reached an embarrassing dead end and no one wants to say. Us carers just carry on.

  • Serious incidents

I have left the best to last or worst to last. It is not always the carers fault, it would be too cruel to say such a thing, but then serious incidents do not often happen in isolation. Something was not past on, or taken into account in some incidences. A family or carer worth their salt would often ask themselves this question if they came through a tragedy “What could I have done to stop this?”, “what did I do wrong?”, “What if I said this instead of doing that?”

This is the main big reason why I am writing such a blog post. What can us unpaid carers do in order to push back such incidents and failings?

Why us carers might be at fault at times

Here it is, this list mentioned is just off the top of my head, it is not an exhaustive list and there is a whole lot more than to what I have mentioned, as I have always said. Left to my devices and I would write a book about it. Just to repeat though, us unpaid carers are not fully at fault, because there is still a culture exclusion, to British value of getting on with it no matter what, the system being pressured to do things quickly and not taking into account carers cannot catch up in time to be part of the movement.

  • Not inquiring

I want this blog to be a role call, not a blame game. I want unpaid carers to puff up their chests and feel brave that they are about to do the right thing. It is us unpaid carers that has more to lose. Carers still need to be educated on what to inqure about, but education can only go so far. Carers should try and ask why a service is the way it is. Carers should ask about the carers assessment or how to complain. We need to ask why carers have not been engaged when something is about to affect them. Carers should ask why patients are falling so unwell in a particular area or hospital.

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We cannot and should not expect the health professional to know it all. Yes, the health professional have gone through rigorous training, especially doctors, psychiatrists and nurses and yet families and carers should inquire. We need to step up our game and ask before we get the sad stories of something going wrong.

  • Leaving it up to someone else

When I run a carers strategy group I watch very carefully who attends and who involves themselves in the debate. Until one day the carer who has been silent for many meetings asks a serious question, you cannot believe the smile that comes across my face. I want carers to be included, but us carers cannot always leave it to someone else to drive the health system. We should not just leave it to the service user to battle to be included and battle for co-production. We cannot not sit idly by and let health design drift over our heads. Us carers cannot leave it to the brave carer advocates or carer champions to take on the health system by themselves. Do not worry if people shout you down or say you are wrong, you are unique as a carer and your experience is worth it.

Caring in the community should be a valued commodity, as a society we should respect it, because it can lead to a caring community and a caring society.

  • Stigma (understandable)

Stigma comes in all forms of shapes and sizes. Yes, there definitely is mental health stigma and it does not only affect the patient, but whole families. The problem is when someone does not want to be labelled a carer because they do not like the term, please note I say “do NOT like” rather than “do NOT understand”. If someone does the caring role and feels they do not like to be labelled as a carer, then that is ok, but there are risks to it. Of course no one should be pressured into being called a carer, but what if everyone felt this way? What if the health system asks for carers input and no one wants to involve themselves?

Purple awareness ribbon isolated on white

Carer stigma can also dampen down carer awareness because unpaid carers are under severe strain due to the NHS struggling under difficult conditions. Carers should try to be proud of their role, its not easy I know, it might seem a little insensitive, but we need to try back carer campaigns from Carers Trust and Carers UK, if you do not fancy campaigning then at least tell your story. Do not suffer in silence! You as an unpaid carer can be more valued than you know.

  • Being too angry and aggressive

This one is quite common and sometimes it is not always the carers fault. After all, when a loved one has been failed, then yes the mental illness spreads to the carer. Thus the carer can become hostile or worn down by fighting to be included on the ‘patients’ recovery journey. It is hard to watch the person I care for fade mentally before my eyes and see her physical health fade away due to years of neglect. I ask myself “What should I have done?” yet no one out there can tell me this. I have learnt as much as I can and want to pass this on.

Yet, at meetings, events and consultations I see the carer shouting and blaming, I admit there is a time for it, but then we are all human and eventually something has got to give. The commissioner or practitioner will avoid the angry carer and that leaves the carer with nothing to stand on. The carer’s cries eventually become a silent scream for only others to witness and try and learn from what could be.

As carers we must try and fight back the rage and try work with the NHS, we all know its not perfect and I expect it will fail us in future, but as carers we can try and use that angry energy and give solutions. We are not experts in health systems, but we can query about it with our valued carers experience.

Again in no way do I blame carers who have been failed in a big way, but unfortunately if we want to see a change for the better, we cannot always fight the system, we have to change it from the inside.

  • Getting on with it

This one is difficult and carers up and down the country just get on with it, they get on with caring, it is in their nature. Society asks this of families and carers, if you have a family, expect to care for them one day or be cared for yourself. There is NO escape!!

I have seen others laugh at those suffering mental ill or even physical health and I can only think to myself “is that person laughing immortal?”

Still, as carers getting on with it is not enough. Sounds cruel doesnt it? As if getting on with caring was not of value, I am asking unpaid carers to not just get on with it, but be counted. Us unpaid carers should not be a tool to do this and that for who we care for, we need to tell our stories, time and time again. Do not be bored, do not be scared, its worth it. It is worth your time, its up to the health system to listen on what has affected your caring role and how your caring role has affected your ‘loved one’.

Do just get on with it, it is your time to speak up and that time is now!!

  • Being pampered

This is controversial, I have even heard the term ‘pampered’ after getting funding from a carers assessment, sometimes I feel annoyed that my caring role leads to this, being spoilt. Well ok, its nice I know and some carers need this, but then do you as a carer get a bit fed up of giving tea and biscuits at a carers support group?

Meeting Of Support Group

I am not saying its not needed, carers support and carer peer support are vitally important, but look again at the serious incidents, are we as carers going to say we need more pampering? You have got to be kidding me!! It is time carers ask to be empowered to lead. We need the carers support group, but it should not be a tool to silence carers to query why systems are they way they are.

I feel constant pampering can even be an insult and there are times I even refuse payment on principle because I see many in the NHS reap huge rewards for doing little. The NHS stands for more than a service, it is based on a principle for health for all regardless of who could afford it.

If as a carer you feel tea and biscuits and a shoulder to cry on is all that is needed, then I agree at times it is important, but do not be naive, sometimes it can be used to silence carers or make them not ask those difficult questions.

EMPOWERMENT!!!

  • Not complaining

Its your right as a carer to complain and complain respectfully, if that does not work complain through advocacy, if that does not work query about why such complaints are falling on deaf ears. If that does not work, query it as engagement meetings, if that does not work. It is time to raise an army and work out what is going on as a group.

It is in the carers right to work out why health systems are they way they are? We need to work with the systems and try hold them to account. A good health system wants to be held to account, but remember be respectful.

  • Not complimenting

Its not always about wearing the angry carer hat. We need to compliment, or try practice doing so. Trust me there is good and bad staff every where. We must recognise the exceptional NHS staff member that has done so much for unpaid carers. As carers if someone is working and someone wants to get rid of then say “NO! that system was working for us”. Compliment on what is working, although make it known what does not work. It can make a difference.

What can us unpaid carers do?

So ok, I have mentioned slightly what unpaid carers need to be aware of, but there is more us unpaid carers can do? The good news is I have provided some info below.

  • Become a member (more than one organisation)

So you want to be included as a carer in health systems? Well heres your chance, be a member of your local health trust. Heck! not only the health trust, be a member of your doctor’s surgery. Carer members are a rare breed and yet their knowledge can really change the health system for the better. Want to know why the health system is struggling? It is not only lack of nurses, doctors and resources, but lack of input from those providing unpaid support, because they often can see health in action.

If you become a member of an NHS trust, you voice can become more powerful and you get a say on surveys, get membership news and updates and can even vote on a few things. I became a member of my NHS trust “South London and Maudsley” and I have never looked back, things have become a lot better for me. I am even a member of other trusts, the more the merrier.

  • Be included service design and evaluation

This is so important, but at least attending meetings on health delivery is good. If such meetings are not happening, then its time to roll up your sleeves and ask why. It is one of the reasons why I set up carer strategy forums. Carers need to know why policies exist for this, but not for that. Especially if it’s a carers policy, do not be afraid to poke your nose into it, it is natural to do so if it is affecting your life and wellbeing.

Still, I know NHS trusts, Healthwatches and CCGs run focus groups. Especially your carer’s center, be included and try attend a few. You never know what your might learn.

  • Get a carers assessment (shows a need)

Elderly care

Ask for a carers assessment if you get a chance, it is your right from the Families & Care Act 2014. It might not be easy to get one and even worse not much could come from it, but if carers are asking for them, then it shows that carers assessment are needed. To often I see carers avoid the assessment because they feel nothing comes out of it. It is not always about carers funding, but recognising what carers need and can help to map out the carers journey. Plus carers assessments should be relationship forming, which unfortunately today they are used to just collect data….what a let down.

Try get a carers assessment anyway.

  • Try attend some meetings

It not always about health service provision. If you want to be in the know, check out your local healthwatch newsletter, or there might be events floating around your councils website. It might be harsh, but when the Greeks philosophers were trying to form democracy, they felt it was everyone’s duty to vote and debate the needs of the day. I feel as carers we should be the same, we are part of the community and it our right our duty to see what is out there and input into it.

  • Fill in surveys (state of care, service provisions)

I am guilty on this and often I do not have the time to fill in surveys, but they are so important, because the reports might lead to decisions. I know Carers UK and Carers Trust scream at carers to fill in surveys, we all know the results of the surverys can put pressure on the government to make important decisions and if those decisions are not followed through then who is to blame? Of course as carers we need to do more than just fill in online forms, but its a start.

  • Get involved (if possible)

Just take a look at NHS trusts and Mental Health NHS trusts around the country, I bet you will find 90% of them having more service user involvement that carer involvement, come to think of it, maybe all of them. Wait!! I bet maybe some of them do not even have involvement? Well it shows a need that carers have to try step up and get involved, it need not be the NHS trust, it could be at the carers center or at your doctors surgery in a participation group, just get involved. Still, I got a few things to say about doctors surgeries, but that is another blog for another day and I hope the RCGP can read it one day (don’t worry, I ll be gentle)

  • Support those who do get involved

Cannot get involved? Well that’s ok. Try support those who are getting involved, that might even be the person you care for or even another carer wanting your views. Avoid letting them battlling the health system by themselves. You can always blog your story or say something on twitter, be respectful if you can or your message might be lost.

  • Network in the community and outside

This one is so important, it is at the core of NHS Englands procedures, or it should be. The words ‘Networking’, ‘engaging’ and ‘community’ are what it is all about and yes the patient and health user are very important, but communication should be core. As a carer if have tripped over myself to network and find out what is working and what other carers are saying.

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It is difficult because some silly carers centers say go back to your local care center, and I even hear horror stories when a carer does not even have a local carers centre and no other carer centre will take them on.

Ever heard the term “Weak brought together makes strong?”

Carers must get out of their area and examine what is working for other carers and learn from them. I have had service users come from other trusts to observe or speak the the carer forums I run. We can learn so much from each other. Do not as a carer “just get on with it”. Get out there and network!

  • Read!!

If you have reached this part of the blog post, well done!! It shows you are doing exactly what I am asking, but do not just read blogs, read policies and procedures. Read the news when health systems or serious incidents take place. Why does it keep happening? Read campaigns on what is going on at Carers Trust and Carers UK!! Read up on stats and data from your NHS trust. Recently we had our NHS trust equality lead talk about data in the equality report. That is so IMPORTANT!! you are lucky if your trust even tries to share data.

Good questions come from reading up on why data is showing something is happening or not happening.

What is at risk?

I am so tired, I think I will come back to update the rest of this blog later on, but I have provided a list below for now.

– Same things keep happening
– Tragedy and suffering
– Fragmented community
– The NHS
– CCGs and health partners think community not interested in health or care
– Harder to navigate the terrain

Final word

– We are more important than others know
– Learn from sad tragic stories
– We love our NHS, but we must be part of it

Poem – She Never Gave up

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Welcome back to my carer blog.   I guess it has been a while, but it is creative corner time.  I have received a lovely poem from an unpaid carer who networks with our forums from the NHS Oxleas services.

SHE NEVER GAVE UP

The challenges were bad
They were ever so mad
A Son she loved – lost
In the abyss of madness – tossed
To and fro from pillar to post
The Son she once knew now a ghost

SHE NEVER GAVE UP

Despite being banished from the lips of her Son
She faced the choice and won
Won the many fights but not the War
Against his brain so horribly sore
Deep inside she could see
The ghost of her Son fighting to be free

SHE NEVER GAVE UP

Poem by – Elsie Cronin

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Carer engagement – What works?

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Welcome back to another blog post from an unpaid mental Health carer. Just a day ago of this blog post, I attended and spoke at the South London & Maudsley trust Psychology and Psychotherapy conference 2019. It’s theme for this year was on involving families and carers. I was excited to be part of the event to get my thoughts out to the audience and on reflection, I felt I pulled no punches. With over 20 years of unpaid carer experience, I have seen and experienced quite a lot in regards to carer involvement and I expect there is more to come. One day I should write a book about it, but this is probably a very long way off.

Still, I feel a lot is at stake and there are times we have to be passionate because we are dealing in peoples lives, since that is the nature of business. Connecting with others at a deep, but difficult level. However when things work out, the rewards pay very high because we can reuse what we have learnt. Yes, I am talking about psychology and psychotherapy. I am no expert in these subjects, but being involved at the NHS trust and in the community for long, I suspect that I have been exposed to such powerful, wonderful and mysterious methods.

On reflection, I was asked by the NHS Trust therapy adviser, what does it feel like to be involved as a carer, what does work and what does not? I felt this was such an important question to ask at the conference since I am not sure how far my influence goes to other carers I network and engage with, which seems to be increasing rapidly. I can only pass on my knowledge and hope others can learn from me.

What I feel works for being involved as a carer

I hope to make things as simple as possible, this is not an exhaustive list and is not in order of importance, however if it was, then “identify me” would be the first. If a carer is not identified and recorded, then it is hard to engage or listen to them.

– Identify me
– Ask me
– Listen to me
– Clarify if you are not sure
– Be patient with me
– Respect me…to a point
– Forgive me
– Involve me
– If involving is difficult, then update me
– Sympathize with me
– Refer me
– Assess me
– Empower me
– Understand me
– Engage with me
– At times I need therapeutic support
– Mind your language

I told the conference that I need to blog about this due to lack of time, but I hope staff can learn from what I have listed. I have also been asked by a carer to write some checklist of what carers need to take note of when starting out on a caring journey. Lets look at this list more closely.

Identify me

Schizophrenia depression male head silhouettes.
Ripped paper Male head silhouettes. Concept symbolizing schizophrenia, dementia, depression.Vector available.

I told the conference that it is not only the NHS trust that is having a difficult time identifying carers, many NHS trusts are struggling. What could be the cause? There are many difficult and complex reasons, however leadership is important, then comes the system information is placed on, then training and then learning from audits. As a carer, if someone comes up and asks if I am a carer, then it can put me at ease, although this is not the same for others as the word ‘carer’ scares them.

Ask me

Sometimes an patient does not want to engage with the service, so I suspect that health professionals should at times request help from the carer, especially if they want some history of the patient or service user.

Listen to me

There have been times when an NHS staff would tell me that they cannot listen to me and hung up the phone. This was not common incident and I never complained, because I thought this was sometimes standard procedure, but there was also this fear that if the staff was reprimanded, who would replace them if they were going to be replaced at all. I would often think to myself if it was me being unreasonable or if the health professional was going through a god awful time at work. Even if just listening and saying nothing, would at times be very helpful to me.

Clarify if you are not sure

There is no shame in getting things wrong. I would much prefer if the health professional ask for clarification on an issue before making decisions that turns out to be wrong.

Be patient with me

There will be times, when I feel my world is collapsing in. It is true that a support group can helpful, but carers cannot live in a support group. They do not know hardly any coping skills or are given much apart from carer assessment, which unfortunately is mainly recording information rather than relationship forming. The state of the Mental Health system tends to focus on the “service user”, after all they are using the service? Thus families and carers eventually build up some resentment or misunderstandings against the goodwill of staff, unfortunately staff might have to be patient with carers.

Respect me…to a point

I do not know the case loads of NHS Staff, nor do I aim to be confrontational. I can only think it be fair if health professionals not loose their temper, raise their voice or be very blunt. Still, we are all human and most of the time I have seen carers pick up mental health needs due to being worn down by the system.

Forgive me

Did I mention we are only human? Expect mistakes from me as a carer, I just do not understand the system at times and things change. I sometimes will make mistakes, say the wrong thing out of emotional turmoil or even fail to engage. I can only hope health professionals see families and carers as fragile at times. They have a lot to cope with depending on the situation.

Involve me

This extends to all that is mentioned in the blog, most families and carers hate being shut out, worse they hate being separated from who they are trying to support, especially when they are in crisis. Carers want to be invited to meetings, copied in on some emails, recorded as in need of assistance or referred to a carers network.

If involving is difficult, then update me

Not all times can families and carers be involved, it really is a case by case method. Sometimes the relationship between the families and patient has broken down. It happened to me, but what I do not want to hear is “Good bye and good luck”. Or told that to be involved in someones care, I need to go through them. Real life does not work like that, family ties or emotional ties are not just cut off and things are strained.

Sympathize with me

Health professionals do not really have to be sincere, they can just try and sympathize. I am aware not everyone can be like this. Sometimes there is little that someone can do about a situation, life can be like that. Carers can really depend on what someone says or does. I am well aware that after a while health professionals can become thick skinned and it rubs off on who they deal with.

Refer me

Not all families and carers want to be isolated and left to cope. There are so many resources and groups crying out for carer participation. This also goes to GP practices who do not refer carers to carer centers or groups. Lord knows how many times I have heard the carer centres I attend mention this, I am not sure whats the best way to tackle this either. After a while, audits and records show carers being missed out by systems. Maybe we are just all so busy being under pressure from deadlines and schedules.

Assess me

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Being assessed as a carer is not my favorite past time. Mainly because I think not much comes out of it. I am not expecting any funding or financial help, but it is important there is a ‘carers’ pathway or plan. Once I have a carers assessment, not much else is heard from it or even referred to. I just wait for the assessment next year and do the whole thing again. Still, Carers assessments are an important part of a carers journey, health professionals get to pick up information that can help in decision making or support the carer in case something is picked up that the carer needs to prepare for. Unfortunately I am at the stage of querying if assessments are being done and who is doing them and what this leads to. A very painful journey. It is not only carers assessments that can help carers, there are other means of assessing the carer, but somehow it must be relationship forming. I can only pour scorn at how the system has turned out where the Local authority does the assessment without much of an idea of the carer and/or patient and then disappears. No relationship, lack of follow up, lack of preparation for the assessment and god knows what else.

Austerity anyone?
Empower me

Family

I am not really expecting the majority of health professionals to do this. This is mainly aimed at trust carer leads, involvement leads, engagement leads of trusts and CCGs. Families and carers know full well that there are other carers out there going through the same issue. They want, ought and should network and learn from each other to learn how to navigate the system. It should not be that a mental health trust should be the gateway for carer empowerment, but NHS staff should work on bringing carers together. To many times on involvement I see the same person doing so many things. The more carers connecting and helping each other out, the better. Carers are crying out for carer peer support, some areas around the UK fair better, not sure how or why.

It is not always the health systems fault, carers need to be encouraged and face that they cannot do the journey alone. The health and social care system to so vast and complex as it is. To make matters even more difficult the system can be held to government policies, which in turn lacks engagement to the community, especially if the community is fragile already.

Carers must be empowered to help themselves, help each other, be a critical friend and engage with health systems. Carers must be involved query why things are the way they are and not be told nothing will change.

Understand me

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This is difficult if I am not identified as an unpaid carer, although it is not a hard and fast rule. It is all about relationship forming with the carer, sometimes there will not be time for this due to caseloads and lack of resources. Still, with every talk, meeting or engagement with a carer, there is a chance for the health professional to understand the carer. What is the carer saying, how are they saying this? What is their body language? Things like that and more.

Engage with me

If I loose my temper out of frustration, I can understand why there is lack of engagement and sometimes when things go desperately wrong, I can understand why the health professional wants to hide. I have seen it happen to myself when a carer has been failed by the system and lashes out at anyone and everything. This in turn makes me think if I have done something wrong. It is only natural, but if engagement is completely cut off we then validate the systems failures. I can only hope there is some form of recovery where both the patient, carer and health professional work together to tackle the issues of recovery.

At times I need therapeutic support

This is severely lacking in the system. Maybe staff are not as trained in therapeutic as they used to be. There is just lack of time, everything seems to be more processed these days, I am not sure what is the correct word for it. I suspect because of safeguard standards, auditing, confidentiality, protocols and lots more. It can be tough to talk to anyone because of the way things are. I am probably one of the most connected carers in the country and yet still feel cut off at times, imagine this for carers not involved much or have little idea of the mental health system or even health system.

Due to a lack of psychotherapists in the NHS, carers just have the support group, which unfortunately can lack the time and tools to tease out what issues the carer is tackling mentally. This leads on unfortunately for carers having to become empowered and try support themselves. It does not help if the support group is only running once a month, even though there maybe more than one support group running in the area. An unpaid carers mind does not just switch off after attending a support group. There must be other resources tooled so carers avoid ending up as the patient, but how? Another blog for another time.

Mind your language

It only takes one word, just one word to trigger the carer for life. It is so important, especially in the mental health system for people not to judge, we are all suffering. Yes, some more than others, but it is not so easy to tell. Some are very good at keeping it all in, some have the tools just to cope, but we all know that coping is not enough, there needs to be some healing process.

Back on to language, out of all the warnings, this is one where I can just about forgive. Life is so fast paced that we often do not think what we are saying, we do not even think about the impact of what we say. Say the wrong thing and the carer could just give up caring. This one is very tough, we cannot just easily train people to understand the triggers. I suspect receptionists at GP surgery can be prone to this. It is foolish to think access to health system only starts and ends with the health professional. From the ward cleaner to human resources, we all promote health and need to be aware of how we engage with others.

What I feel might be difficult for me being involved

I am going to update this list in the future, but thought to at least compile the list

– A rule of thumb, the opposite of what has just been mentioned
– Avoiding me does not work
– Not respecting my confidentiality
– Being rude
– Not responding
– Not listening
– Failure to refer
– Politics
– Jargon as a barrier
– Not acting on carers judgement
– Lost information

Thank you for taking the time to read this.

Triangle of Care – Learning from each other

Giving helpWelcome back to another blog post from unpaid carer Matthew Mckenzie. I often blog about the situation many mental health carers face up and down the UK, however not only do i write about the caring journey, I get involved and take the initiative to network with many other unpaid carers supporting ‘loved ones’ with mental health needs.

I champion and praise many projects that work towards the good of the community, especially health care projects and the ones that take note of families and carers have my keen interest. One of these projects looks to create good practice and work towards culture change in regards to the carer journey. This policy is the called Triangle of Care, which I have blogged about a while back.

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The triangle of care works towards bringing together unpaid carers, carers’ centres, third sector organisations and mental health service providers to work together to insure best practice for mental health services.

When I attend triangle of care meetings I am often amazed at the dedication and work that many NHS mental health service providers share with each other. The lastest triangle of care meeting was hosted by Kent and Medway NHS trust over at Dartford, we were joined by many other NHS trusts where some already were members, while other are working towards joining, we also were joined by other other carers and third party community charities.

As a carer, I learnt so much about the work mental health trusts were doing and i am impressed to see many london NHS trusts attend and share knowledge about the work they do including Central and North West London NHS Foundation Trust, Oxleas, South West London St Georges, Surry & Boarders NHS Trust, Berkshire NHS trust, the Sussex Partnership NHS Foundation Trust and many more.

meeting

One of the strong points of The triangle of care is self-assessments for existing service provision, this was achieved by Kent and Medway two years ago and I have learnt that KMPT has been awared their second star for for completing self-assessments for all community services (all mental health, learning disability, older people and dementia and substance misuse services). I would like to offer my congratulations to Kent and Medway NHS trust and hope they keep building on their success.

You can learn more about KMPT from their site https://www.kmpt.nhs.uk/

Plus feel free to check out Kent & Medways work on the triangle of care below.

https://www.kmpt.nhs.uk/carers/triangle-of-care/

Another strong point of the triangle of care is principles. Principles are usually things people can often try and remember and the triangle of care has six.

These being :

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 acute care pathway.

6) A range of carer support services is available

More details can be found on the triangle of care below.

No one is saying such principles are easy to achieve and a lot of hard work and dedication has gone into culture change in the mental health services. We need input from all involved being staff, patient and carers.

You can learn more about the triangle of care here.

https://carers.org/article/triangle-care

One thing I want to note is that every time I attend such meetings, I have always felt I managed to contribute as a carer, especially since I network and hold forums with other carers in South London, I feel us carers can work together and feel part of the system, rather than battling the system.

I look forward to the next Triangle of Care meeting hosted by South West London st Georges NHS trust.

One last thing to mention is we are due to hear some exciting news from the Royal College of Nursing and I hope carers will be a strong focus point in the work they will do.

I would like to thank KPMT for letting me use the photos and well done Kent and Medway NHS trust for their 2nd award.

Happy Nurses day 2019 everyone.

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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.