Category Archives: Aimed at Carers

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

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

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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.

Family

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

 

Gone too Soon

Sad man sitting head in hands on his bed in a bedroom at home

Just to note this particular blog can be triggering and not just for those suffering mental ill health needs, but also for families and carers.

As you can tell by the title of this particular blog post, this centres on the devastating experiences which mental ill health can cause to families and loved once.

There are some families that do not often get a chance to share their experiences when something tragic has happened to the person they are trying to support or care, although I know full well that this can also happen two close friends, relatives and perhaps even a neighbour.

As a care of myself I know in the back of my mind that there will a time when I will have to fight a mental health crisis for the person I support. Perhaps I will succeed, but I know out there carers up and down the country will have to deal with the devastating experiences when a loved one by finally succumbs to mental ill health.

melancholy and sad young  woman  at the window in the rain

I’m afraid I’m not going to pull any punches, when I mean succumb to mental ill health. I am talking about suicides, deaths due to addiction (alcohol or drug related), death Due to an accumulation of medication side effects causing massive strain on physical health. I am talking when the mental health sufferer cannot cope anymore with dementia, Parkinson’s or degenerative illnesses affecting the brain.

I am not going to use this blog post to lay blame at anyone’s door. However I just would like to raise the issue that’s such experiences need to be highlighted and discussed. We should never expect families and mental health sufferers to just cope and get on with it.

Coping with death

It is never easy to try and deal the situation when someone loses a loved one two mental illness. Unpaid Carers and families can often blame themselves as if they feel they have not done enough to save the loved one’s life. Some people think mental illness can only affect the one person who has been diagnosed with the condition.

In some ways this is possible, but not often the reality. We should try to avoid putting people in boxes. When death strikes a family due to mental ill health, i’m sure that grief, depression and anxiety will affect those that was close to the patient or service user. If you were a carer caring for someone long-term suffering from mental health, the grief stricken experiences will climb to unsustainable levels.

As unpaid carers it is important to respectively raise the awareness of coping with death, especially if you have been a long time carer. We all need to work together with the health services and our loved ones to avoid situations where patients might end up being failed by the system.

If anything off this post has affected you please call Samaritans on

116 123 (UK)
116 123 (ROI)

Thanks for reading.

Carers Rights Day 2018

smallerBefore you read this blog considered this, if you are an unpaid carer think of all the outcomes that you have experienced so far. Think of all the hardships that you and the person you care for has gone through.

Carers rights day

Every year organisations that deal with unpaid carers and support those using the health services come together and try to raise awareness of unpaid carers. CarersUK promote the awareness day and theme this year is “caring for the future”.

carers-rights-day

Just so you know I will introduce the few terms in this blog. When I talk about an unpaid carer, I am not talking about a care worker.

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The stigma of an unpaid Mental Health Carer

matthew-mckenzieWelcome back to another blog from unpaid carer in the south of London. As world Mental Health Day draws near, a lot of emphasis is placed on those suffering angel problems. I find it quite important that you must not forget the hidden Heroes who’s tape in when their loved ones are in most need. This is not to take away the difficult battles mental health survivors face, however all too often sigma hits out at more than one person.

Mental health stigma hits the family, the friend, the husband, the wife and even the neighbour. This blog will concentrate on another type of stigma, which can be all Too Well forgotten. I am going to talk about carer stigma. Now it is very important that not all unpaid carers suffer from carer stigma.

First you must differentiate what or who is an unpaid carer. I am talking about the person who suddenly finds themselves caring for someone close to them who has been unfortunate to pick up either physical or mental health problem. I am not talking about paid care workers, although I do admit care workers to find they can have a difficult job, they are paid for their role and can be protected by Union.

Arguments.

With carers they are not trained and often care out of closeness and love for the person they are trying to look out for. It gets really difficult if that person has a mental health illness.

The types of carer stigma.

So Let’s Begin, I cannot really produce an exhaustive list of different types of carer stigma, but the ones that i am showing i’ll probably the most recognisable types of carers take life out there.

Depends on the illness.

When a loved one become very unwell, he often try as hard as he can to support them. The problem is the more chronic the illness the more is stigma lash out. A good example is when a carer is caring for someone suffering psychosis, those suffering from this difficult illness can often present challenging behaviours. If such behaviour is out in public, then the challenge is not only faced by the mental health Survivor but also the carer.

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It only takes one person to ridicule the suffering from a mental health problem. This can then extend to the person family, the risk is once a community starts to gossip about the situation, it can cause the carer to become more isolated. This in turn leads to stigma of both mental health and carer. As a note not or carers go through this and it probably can depend upon the illness anyway.

The Label

Although not as devastating as the first form of carer stigma, it still can be rather destructive. Some people carry on caring and supporting those close to them out of desperation. They carry on caring regardless of the support mechanisms that amen applied to the family network.

At first it seemed really brave, it is great to hear a carer battle it out no matter what the situation. However there is one big problem, no matter what are the carers might say to this situation, the person still feels that they do not deserve the term of being labelled a carer. The problem is that this person will then like the support network available for carers.

Clashing forms of relations

This type of stigma is actually quite similar to the one mentioned previously. A good example is when a person marries someone they marry for better or worse. When the worst does arrived, the person cares especially out of love. They care because they are either the husband or wife. If you try to tell them that they are now a carer, that person may become very irritated. They refuse to be labelled as a carer, and yes this is the right, but the risk is lack of support network available to them.

This care stigma can also extend to other relations within the family, another good example is a young person caring for a parent, or even especially a young carer. Can you imagine as a child having to suddenly provide care for an older adult suffering a mental health condition?

The terrible characteristics of an unpaid mental health carer

There are several characteristics, which are aimed at carers. I am going to go through a few that come off the top of my head.

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Being labelled as lazy

All too often we have to work for a living, we have to pay our dues. The harder the work we do, the more we expect to be paid. The more complex the role, the more we expect be rewarded. There is this review going around that the Caring role is fairly easy, because some people think that it is easy, they think that the carer does not have to do much at all. This can lead to carers being labelled as lazy. Once a person is targeted as lazy, they do not really want to be labelled as a carer.

Being blamed

This is quite common in the field of psychology/psychiatry, especially in America. When someone is unfortunate enough to develop a mental health problem, all too often psychiatrists tend to probe the family structure. All too often, it says if the carer is not doing their job properly. It might even go so far as to state that the carer is causing the mental health relapse or has caused the mental health problem to manifest itself in the first place.

One of the main criticisms of psychiatry, is at one end it might exclude the carer in their supporting role/care plans or confidentiality and at the other end label the carer as the problem within care plans and assessments. This can lead to a person not really wanting to find the energy battling a mental health system that can misunderstand the caring role.

Confrontational

Another good example of how the mental health system might fail families and carers, is if the carer has experienced failures in support of their loved ones and even the care of them self. It then becomes only a matter of time before the carer becomes more confrontational. No one really wants to be labelled as aggressive, uncooperative and confrontational. This is just another label a person can do without, so why would they want to be labelled as a carer?

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Risk of declining health

Again this might depend upon the type of illness the person is trying to care for, the more chronic the illness, the most stressful situation is for the carer. Since the NHS is under severe strain, a person would have to think hard and long before they would want to commit themselves in becoming an unpaid carer. It is like that there has been a secret contract, stating that the carer now must take the role of the lack of staff within the health system. This could be administering medication, advocating, understanding side effects, understanding social welfare, mental health legal matters, engaging with doctors and also mental health advocate and peer supporters.

Is there any wonder why carers can end up with depression, anxiety, stress and worry? One could say that mental health illness can be catching.

Hiding it all away

I’m afraid I have bad news, for what I have mentioned is only the tip of the iceberg when it comes to Carer stigma. I did not want to make this blog post overly long. With the above issues mentioned, is it any wonder why someone wants to hide themselves from being labelled as a carer?

Promoting your voice as a carer

insert_edited-1Hello, welcome to my latest blog. This particular blog is aimed at carers. This post hopes to be an inspirational message for anyone who is caring for a family friend or even a neighbour.

This post looks at promoting your voice as a carer. As a carer by our role, we give up so much and sometimes expect little, by definition health services and sometimes social services are aimed at the patient. Policies and laws can often assume that the family and carer are strong enough to cope by themselves.

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