Hello 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?”.

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.

• 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.

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.

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?

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?

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)

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.

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